Secrets to a Good Night’s Sleep
for Cancer Survivors
by Patricia Carter, PhD, RN, CNS
Sleep is a basic physiologic need, as important as food and air to our health and wellbeing. However, when you have been diagnosed with cancer, sleeping well can become more difficult. According to the National Cancer Institute, over half of all people diagnosed with cancer complain of difficulty sleeping at some point during or after treatment.
Why sleep is so important
Good sleep is vital because it provides you with the energy needed to fight your cancer. In addition, researchers have linked sleep quality (not just quantity) to the body’s ability to combat cancer. Long-term poor sleep changes the balance of two key hormones in the body: melatonin and cortisol. These two hormones may influence the behavior of cancer cells.
♦ Melatonin is the body’s sleep hormone. When melatonin is released from the brain in the evening, it helps the body prepare for sleep. Melatonin may also play a protective role in preventing cancer.
♦ Cortisol is the body’s stress hormone. When cortisol is released by the body, it gives you a boost of energy. It also helps release cells that aid the body in battling cancer. Cortisol levels are supposed to be at their lowest during nighttime sleep before they rise rapidly in the morning to give you energy for the day. However, shifted patterns, where cortisol levels peak in the afternoon, have been linked to increased risk for breast cancer. Poor sleep can also worsen other medical conditions, such as diabetes, heart disease, respiratory illness, anxiety, and depression. Each of these conditions can diminish your body’s ability to fight cancer and may reduce the effectiveness of your cancer therapy.
Causes of sleep problems
Insomnia, which is characterized by difficulty falling asleep or staying asleep, waking too early, or experiencing non-restorative sleep, is the most common sleep problem in the nation. And people with cancer are twice as likely to experience insomnia as are people without cancer.
People with cancer are twice as likely to experience insomnia as are people without cancer.
A person with cancer may have trouble sleeping for many different reasons. These may include physical changes caused by cancer surgery or by the cancer itself, side effects of cancer treatments or other medications, and stress about having cancer. Your healthcare provider can help you understand the factors that may be contributing to your insomnia and can work with you to make your sleep the best it can be.
Steps to sleeping better
Cancer or not, everyone has a bad night’s sleep from time to time. But for someone experiencing cancer-related insomnia, a good night’s sleep may seem like a far-off dream. However, there are some things you can do to bring this dream back into reach.
Engaging in a bedtime routine, or a healthy set of activities before bed, will signal the brain that it is time for sleep.
♦ Know your light sources. Melatonin (The sleep hormone, remember?) is released in response to an absence of blue light. Conversely, being exposed to blue light, like sunlight or light from electronics, turns off melatonin production. Using light appropriately will help to regulate your circadian rhythm and sleep-wake cycle. Be sure to get exposure to at least 30 minutes of blue light in the morning (to wake up), and avoid blue light in the evening (at least 30 minutes before bed) to allow melatonin to be released so you can fall asleep.
♦ Practice mindfulness-based stress reduction. Mindfulness-based stress reduction focuses on reducing stress through nonjudgmental awareness of the present moment, leading to improved psychological well-being. The key is to practice mindfulness-based stress reduction throughout the day to reduce the amount of stress you carry into the bed with you. Lower stress makes it easier to fall asleep and stay asleep.
A note about sleeping pills
If you’re having trouble sleeping, your healthcare provider may prescribe a sleep medication to help you get your sleep schedule back on track. Sleep medications should only be used as prescribed, and only for short periods. To combat chronic sleep problems, the best approach is to treat or remove the underlying cause.
♦ Pursue healthy sleep habits. Engaging in a bedtime routine, or a healthy set of activities before bed, will signal the brain that it is time for sleep. Make your bedroom a haven for sleep. Reserve the bed for sleep and sex only. No eating, watching TV, texting, surfing the internet, or doing work in bed, as this sends confusing signals to your brain about when it’s time to wind down. Your bedroom should be dark, cool, and quiet to promote sleep. You should also try to avoid stimulants in the evening. Consume your last caffeine at least six hours before bed, and restrict vigorous exercise to the first part of the day. Sleep works best when your mind and your body are calm and relaxed.
♦ Try cognitive behavioral therapy. Cognitive behavioral therapy, or CBT, focuses on resolving anxieties you may have about getting enough sleep. Through cognitive behavioral therapy, you learn to identify and change negative thoughts and beliefs about sleep into positive thoughts and images that will help you fall asleep more easily, and fall back to sleep when you awake in the night. Both in-person and video-assisted CBT sessions have been shown to be effective improving sleep.
Sleep is important for supporting every function in your body. Quality sleep will buoy your mental and physical health, regardless of where you are in your cancer journey. If you’re having trouble sleeping, talk to your healthcare provider. Your healthcare provider can offer you support, help pinpoint the cause of your sleeplessness, work with you to develop a better-sleep plan, and refer you to a sleep specialist if needed.
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Dr. Patricia Carter is an associate professor of nursing at The University of Texas at Austin School of Nursing in Austin, TX, and an active member of the American Academy of Sleep Medicine, the Sleep Research Society, and the Oncology Nursing Society. She is a nurse scientist who has been designing and conducting intervention research with cancer survivors and their family caregivers for over 17 years. Dr. Carter is passionate about helping everyone get a better night’s sleep. You can find her on Twitter @carter3236.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, March/April 2017.
What is Multiple Myeloma?
And How Is It Diagnosed?
Multiple myeloma is a blood cancer that starts in the plasma cells of bone marrow. Myeloma is different from bone cancer because it begins in the white blood cells, not in the bone. Though the words sound similar, myeloma is also not melanoma, which is a cancer of the skin.
Myeloma develops when plasma cells divide abnormally without control. The overproduction of abnormal plasma cells can cause bone damage and pain. Myeloma can also cause other problems, like anemia and kidney damage.
Multiple myeloma is commonly divided into two distinct groups:
♦ Asymptomatic or smoldering myeloma is when multiple myeloma is diagnosed early, with no symptoms, but with slow growing malignant plasma cells. If multiple myeloma is asymptomatic, a “watch and wait” approach is routinely taken.
♦ Symptomatic myeloma is when multiple myeloma is diagnosed and the individual is experiencing symptoms such as unusual weight loss, bone pain in the back or ribs, fractures in the spine, numb or weak feelings in the legs or arms, kidney damage, frequent infections, and anemia which leads to fatigue. Usually when symptoms are present, treatment is started immediately.
There is no known cause for multiple myeloma, but with improved diagnosis and treatment methods, death from multiple myeloma has decreased dramatically since the 1980s. At this time, there is also no known cure for multiple myeloma, so the success of treatment varies widely for individuals. It is mostly dependent upon the biology of the disease, as well as a person’s health before treatment and how well they can tolerate a treatment.
A second opinion is often recommended before starting treatment, and in some cases, insurance companies require this step prior to starting treatment.
Researchers are studying the details of multiple myeloma cells and other possible risk factors to learn more about what causes it and why. This will hopefully lead to better diagnostic and treatment methods in the future.
Multiple myeloma can run in families. If you have a close family member who has multiple myeloma, it is helpful to share your family cancer history with your doctor.
Getting a Proper Diagnosis
Most often, a person goes to the doctor for symptoms such as fatigue, weight loss, urinary problems, extreme thirst, infections, pain, or a broken bone. They have no idea that the problem is really blood cancer. Then a routine blood test or bone X-ray may alert a doctor to test further for multiple myeloma. When multiple myeloma has no symptoms, it is sometimes identified during a yearly physical.
If multiple myeloma is diagnosed, the next step is to determine how far it has spread. This information may help direct treatment decisions. Multiple myeloma is not staged in the same way as other cancers. Your doctor may use one of two staging systems: the Durie Salmon Staging System or the International Staging System. These systems will help your doctor better understand your disease. Talk openly with your doctor and nurse to learn more about your disease because each person’s multiple myeloma diagnosis is different.
Finding the Right Doctor
It is helpful to find an experienced hematologist-oncologist – a doctor who specializes in cancers of the blood and related tissues, including bone marrow – to treat multiple myeloma. Ideally, you can work with someone who you can talk to and trust and who will accept your type of health insurance. You will work with this individual for a long period of time as they coordinate your care. There are several ways to find an expert in your area.
♦ Ask your primary care doctor for a referral. Most primary care doctors know one or more hematologist-oncologists with expertise in treating multiple myeloma.
♦ Ask your health insurance company for a list of hematologist-oncologists in your area, and ask your primary care doctor if he or she can recommend one from the list.
♦ Search for hematologist-oncologists through the websites of professional organizations such as the American Society of Hematology (hematology.org/patients), the American Society of Clinical Oncology (cancer.net), the Multiple Myeloma Research Consortium (themmrc.org), or the National Cancer Institute (cancer.gov).
Getting a Second Opinion
Some people find it difficult to speak to their doctor about getting a second opinion. A second opinion is often recommended before starting treatment, and in some cases, insurance companies require this step prior to starting treatment. A doctor should be comfortable with this request and should assist you in seeking a second opinion.
It is always a good idea to interview a few doctors and collect a few opinions about how to treat your disease. Getting more than one opinion can provide you with additional information and options, access to a different medical facility and team, or access to a clinical trial. It may also give you confidence that you are already on the right track.
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Excerpted with permission from Frankly Speaking About Cancer: Multiple Myeloma © Cancer Support Community. For more information about the Cancer Support Community, visit CancerSupportCommunity.org or call (888)793-9355.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, March/April 2017.
Get Help for the Sexual Side Effects of Prostate Cancer Treatment
by Daniela Wittmann, PhD, LMSW
Men diagnosed with prostate cancer often want to know, “How will cancer affect my sex life?” Although beating cancer is certainly the first concern, many men with prostate cancer do factor in sexual side effects as they weigh their prostate cancer treatment options. Sexuality is an important part of everyone’s identity, and the threat of losing it is a worry for many men and their partners. Naturally, couples want to learn how they can protect it.
The first thing you should do is figure out how important sex is to you. Some people think that men who undergo androgen deprivation therapy stop caring about sex when their testosterone is depleted, but this is not true for most men. It’s important to talk with your partner about what role you want sex to play in your relationship. Some couples approach prostate cancer with less priority placed on sexual activity for a variety of reasons. But if sexual activity is important to you, it is best to discuss it openly with your partner before making a prostate cancer treatment plan with your doctor.
Let your doctor know that discussing the sexual side effects of prostate cancer treatment and rehabilitation is important to you. Ask your doctor to set time aside for this conversation. There is a lot to learn, and the more you understand how prostate cancer may affect your sexual health, the more realistic your post-treatment sexual expectations will be.
The more you understand how prostate cancer may affect your sexual health, the more realistic your post-treatment sexual expectations will be.
Talking about sex can be a bit uncomfortable for most people. The thought of discussing erections, orgasms, and intercourse can make anyone clam up. These discussions can be even more challenging for gay men and their partners, as they may have to overcome implicit biases and assumptions about their sexual orientation. It can feel like coming out all over again. However, it’s important to learn about the unique healing issues for men who have anal intercourse. Regardless of your orientation, the bottom line is getting the right information about resuming sexual activity is important for all men.
You can prepare for this conversation by writing down your questions beforehand. You may even want to practice your questions so you can get more comfortable saying words like erection, orgasm, and intercourse. Here are a few things you might want to ask:
- How will each treatment affect my sexual function?
- Does the hospital offer any type of sexual rehabilitation for prostate cancer survivors?
- Can you suggest a sexual health specialist who can help with sexual health issues after treatment?
- Is there someone I can talk to about erection aids?
- Can you refer my partner and me to a certified sex therapist who can help us navigate the prostate cancer experience?
If you don’t get all your questions answered, ask your doctor for another appointment.
Many physicians who treat prostate cancer now offer penile rehabilitation to men who want to maintain their penile tissue health after treatment. Penile rehabilitation may also aid erection recovery for men who have prostate surgery, though researchers are still collecting evidence to substantiate this theory. For men with lasting erectile dysfunction, a variety of medical or mechanical aids can be prescribed. A sexual health specialist can help guide you through the process of recovering sexual intimacy after prostate cancer.
If your sexuality is important to you, don’t neglect this aspect of your recovery after prostate cancer treatment. Help is available. But, to ensure the best results, you must start early, even before your treatment begins.
♦ ♦ ♦ ♦ ♦
Dr. Daniela Wittmann is a clinical assistant professor of urology and a certified sex therapist at the University of Michigan in Ann Arbor, MI. Her clinical work and research focus on prostate cancer survivors and their partners.
If you’re struggling with recovering your sexuality after prostate cancer, a sex therapist may be able to help. You can find one in your area through the American Association of Sexuality Educators, Counselors and Therapists (aasect.org) or the Society for Sex Therapy and Research (sstarnet.org).
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, March/April 2017.
When Your Child Has Cancer
by Michele Pierce
You wake up. You only have a second before reality punches you in the gut. The tears begin to fall. Soon they are streaming down your face. But you fight them off. You must be strong. You tell yourself that everything will be OK.
All day, you walk aimlessly around the house, trying to rid yourself of the giant knot in the pit of your stomach. When you speak, your words sound far away, detached, as if they did not come from your mouth. Your mind and soul are wrapped in grief. You can’t think about anything. You can’t do anything.
You become desperate for information. You search the internet. You avoid anything that looks discouraging. You look for something positive, some reassurance that your daughter will get through this. You learn about the type of cancer she has. You become more incredulous when you read that it is rare. She does not fit the typical profile. It does not make sense. The questions never stop nagging you: Why is this happening? How did it happen? Could you have done something to prevent it?
The questions never stop nagging you:
Why is this happening?
How did it happen?
Could you have done something to prevent it?
You will drown in tears if you let yourself. You think of your daughter. What do you tell her? You are not ready to tell her what the doctors already know. You worry about how she will respond. You want to be ready for anything. Will she give up? Will she think there is no hope? Will she think she will die? You decide then that you are your daughter’s warrior. No matter what, you will get her through this. You will stay positive. You will never give up. You will EXPECT that she is going to get well. There is no other acceptable outcome.
In no time, the course of treatment is set: chemo, then surgery, then more chemo. As you watch the medicine drip into her veins, the word barbaric comes to mind. The medicine is poison. It wreaks havoc on your daughter’s body in its attempt to kill the cancer. She loses weight. She loses her hair. Her immune system is destroyed. The surgery leaves her unable to walk for months.
You are silently angry. You hate that this is the only way to save your daughter’s life. But you know she is in great hands. The doctors know how to manage the side effects. Her hair will grow back. Her immune system will rebound. You begin to live life one day at a time, grateful for every good moment, knowing that at any time a bump in the road will throw you back into a maelstrom of anxiety. And through it all, you are incredibly amazed at the strength and resilience of your 12-year-old girl. She trusts the people around her and moves through the process without question.
When the treatment ends, a new cycle emerges. You daughter will have scans every three months for the next four to five years. In the weeks leading up to each scan, you worry. You pray that the cancer has not returned. Then, each time you hear that the scans are clear, you rejoice. You get a few worry-free days before the anxiety begins to seep back in.
At the same time, your daughter picks up where she left off at school. She begins planning all the things she wants to do. For the first time, the curtain of caution does not surround you as your daughter talks about her plans.
Tonight, she is going to her first prom. You quietly watch as she and her friends walk to their cars. It’s a sea of colorful dresses and black tuxedos, flowing to the sounds of chattering voices and high-heeled shoes clicking against the pavement. At this moment, your daughter shows no signs of the last three years. Right now, she is just another carefree teenager girl.
You savor these moments. You realize that although cancer has devastated your lives, it has also shown you the tremendous beauty and pleasure that can be found in everyday events. You simply feel joy that your daughter can go to a prom. For today at least, life is normal.
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Michele Pierce is a cancer caregiver living in Southborough, MA.
Discovering the Life I Was Meant to Live
by Amelia Frahm
“You’ll get over it, and one day you’ll wake up in the morning, and cancer won’t be the first thing you think about,” said the woman on the phone.
“Lady, I’m not ever getting over this!” I thought to myself.
Cancer is no longer the first thing that comes to my mind upon waking, but it likes to remind me that it could be. That is why, despite the butterflies in the pit of my stomach when I’m speaking to audiences, I continue to advocate for cancer awareness. It has been the scary, awful, heart-wrenching blips in my life – like my cancer diagnosis – that have motivated me to quit wasting whatever time I have left and to do something meaningful with it.
This past February marked 23 years since I lay in the heated comfort of my waterbed, talking on a landline to the well-meaning breast cancer survivor my surgeon had asked to call me. In 1994, my “something meaningful” was having the energy to roll out of the bed and take my children to the McDonald’s playground. At age 34, I had all sorts of things I still wanted to do with my life. But the thing I wanted most was to watch my two- and four-year-old children grow up.
It was that uncertainty that led to my tempestuous journey to becoming an author, publisher, advocate, and National Cancer Survivor’s Day speaker. What I thought I wanted to do with my life and what I was meant to do were often at odds. Establishing a micropublishing company and producing a children’s book, which, due to its topic, wouldn’t be touched by large publishing houses staffed by people more knowledgeable than I, was not even my pipe dream. All I intended to do was write a story for and about my own family to help explain what we were going through and, God forbid, if I didn’t make it, to remind my children how much I loved them.
My cancer diagnosis set me on course for a career I never planned, and even prepared me for the nausea that came with it.
My cancer diagnosis set me on course for a career I never planned, and even prepared me for the nausea that came with it. However, that preparation didn’t stop the devastation I experienced when a critic told me she felt sorry for the children in my cancer story because the mother in it (a nicer version of me) was just so mean.
That rough draft was an honest depiction of the depression and emotional mood swings that children often witness when a parent is diagnosed with cancer. In 1994, those things were not being talked about aloud, much less written about in a children’s book.
This journey has taken me through mountainous highs and hellacious lows. For example, in October 2001, the producers of the Rosie O’Donnell Show invited me to appear on the show during Breast Cancer Awareness Month. For any author, let alone a first-time, unknown author like myself, it was equivalent to winning the lottery. However, just a few days later, an anthrax scare forced the studio to cancel my appearance. But not before newspapers all across the country had printed a press release about my upcoming television debut. Once again, it was like I had won the lottery, only this time it felt more like the one depicted in the Shirley Jackson short story I remember reading in high school English class.
Fortunately, the books I had sent ahead did not get tossed due to fears of anthrax contamination. After seven years of recovery, denial, personal loss, and both public and private rejection, the release of my children’s book, Tickles Tabitha’s Cancer-tankerous Mommy, was announced on the nationally syndicated Rosie O’Donnell Show. My career, pioneering resources for children of cancer-stricken parents, was launched.
There are moments in all our lives that can be painful and humiliating, but as a cancer survivor, I’ve come to realize those moments are the ones we look back on, appreciate most, and sometimes even laugh about. The truth is the things that go wrong are what make life most interesting.
Nope, I didn’t get the life or career I thought I wanted, but I got the one I was meant to live. It’s not always perfect, but it sure is interesting.
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Amelia Frahm is an author known for taking contentious, difficult topics and putting them in a format children of all ages understand and find interesting. Along with Tickles Tabitha’s Cancer-tankerous Mommy, she’s also the creator of the Crack Open a Book! cancer education school program curriculum. You can learn more about Amelia at NutcrackerPublishing.com or ameliafrahm.blogspot.com.
Get Your Digestive Tract Back on Track
Tips for Coping with Cancer-Related
by Marie Morande, RD, CSO, LD
No matter what type of cancer treatment you receive – radiation, chemotherapy, or surgery – all of them pose potential side effects. And some of the most common side effects involve the gastrointestinal tract, also called the digestive tract. Cancer treatment can affect your body’s ability to absorb food, and can cause disruptive gastrointestinal issues. These gastrointestinal complications may include nausea and vomiting, diarrhea, constipation, and sore mouth.
♦ Nausea and vomiting can affect your nutritional intake during treatment. It’s important to keep them under control. Anti-nausea medications can help you manage cancer-related nausea and vomiting. Talk to you doctor for specific recommendations.
Dietary changes can also be helpful. Eat small, frequent meals of easily digestible foods. For example, crackers, pudding, yogurt, sherbet, fruits, rice, baked chicken, sandwiches, oatmeal, and broth-based soups. Certain spices, particularly ginger, cinnamon, allspice, cardamom, cloves, fennel, and mint, are considered stomach soothers and may also help with nausea and vomiting. Avoid cooking foods that produce strong aromas. And stay away from spicy or greasy foods.
Another thing you can try is acupressure bands. These bands apply pressure on the wrist to stimulate an acupuncture point that practitioners believe may help stop nausea and vomiting. Though typically used to alleviate motion sickness, these bands may also help ease cancer-related nausea.
♦ Diarrhea, which is defined as a change in the consistency or frequency of your stools, may force you to stay home and limit your activity, decreasing your quality of life. The standard treatment for diarrhea is loperamide, but other medications are available. Your doctor can help you find the one that works best for you.
Your diet also plays a role in managing diarrhea. Eat a low-fiber, lactose-restricted diet by avoiding raw vegetables (like broccoli and cauliflower), salad, bran, skins of fruit, and high-fiber cereals, and limit dairy products containing lactose. Soluble fiber like psyllium may help control diarrhea by bulking the stool. Probiotics may help with diarrhea as well. If you’re experiencing frequent diarrhea, eat foods that are high in salt and potassium, or drink electrolyte-enhanced drinks, to replace the electrolytes your body is losing.
♦ Constipation is a common side effect of cancer treatments. Anti-nausea and opioid pain medications may also cause constipation. To prevent constipation, it’s important to begin a daily bowel care program when you start cancer treatment. Although the exact regimen will vary by person, experts recommend starting with a stimulant laxative and stool softener, and then adjusting as needed per your doctor’s recommendation.
In addition, eating a high-fiber diet can help manage constipation. High-fiber foods include fresh fruit, dried fruit (like prunes), raw vegetables and salads, and multigrain goods. Wheat bran is especially helpful. Wheat bran, which is often found in bran cereals, can be added to other cereals, muffins, yogurt, and soups. It’s also important to increase your fluid intake, and drinking hot beverages (like senna tea or green tea) may be especially helpful.
♦ Mucositis is inflammation of the lining of the gastrointestinal tract, usually caused by chemotherapy or radiation therapy. Oral mucositis refers to inflammation and ulceration of the mouth. Preventing and treating oral mucositis starts with good mouth care. Brush your teeth with a soft-bristle toothbrush, and routinely rinse your mouth with a bland mouthwash or rinse.
No single rinse has been found more effective than another in preventing mucositis; however, a baking soda or salt rinse is a common and economical option. To make at home, mix one teaspoon of baking soda or salt with one pint of water. Rinse your mouth with one tablespoon of the solution for thirty seconds, and then spit out the mixture. You should do this four times each day.
If you’re starting fluorouracil or melphalan infusions, you may find that sucking on ice chips for 35 minutes during the infusion may help reduce oral mucositis. However, avoid ice if you are taking drugs that can increase cold sensitivity, such as capecitabine or oxaliplatin. Aloe vera, honey, and glutamine may also help to reduce the severity of mucositis.
If you have mucositis, eat bland, soft, and moist foods. You can try nutrition supplement drinks, homemade protein shakes, and bananas, as these are all nonirritating, nutrient-dense foods. Avoid spicy foods, citrus, and dry or coarse foods that may irritate your mouth until your mucositis heals.
Ask your doctor about the side affects you should expect from your course of treatment. Your doctor can help you develop a plan to minimize gastrointestinal side effects while maximizing nutrition and fluid intake.
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Marie Morande is a certified specialist in oncology nutrition at the Lynn Cancer Institute in Boca Raton, FL, and a member of the Oncology Nutrition Dietetic Practice Group of the Academy of Nutrition and Dietetics.
Order FREE copies of Coping with Cancer magazine for your National Cancer Survivors Day event.
The deadline is April 24.
Give the gift of knowledge, hope, and inspiration to those attending your local National Cancer Survivors Day event with copies of Coping with Cancer magazine.
Copies of the May/June 2017 issue of Coping will be available free of charge to all registered NCSD coordinators while supplies last. All you have to pay is shipping and handling. Download an order form and get your order in before they run out. The deadline to order is April 24.
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How to Make the Most of Life after Cancer Treatment
by Jolene Rowe, LCSW, OSW-C
It may surprise you to know that there are now 15.5 million cancer survivors in this country. Needless to say, much has changed for cancer survivors in recent years. We have increasing knowledge about late and long-term effects of both cancer and its treatment. We even know more about how to prevent cancer recurrences and extend survivorship after treatment ends.
Although this is all promising news, you may find it to be of little comfort as you’re staring down the myriad challenges of cancer survivorship, feeling isolated, dealing with physical and cognitive changes, dreading follow-up appointments, or worrying about cancer recurrence with every ache and pain. You may be asking yourself, “What do all these changes mean for me? And how do they help me resume a normal life?
While living longer after cancer is a reality for many survivors, living well continues to present some challenges. As the period of survivorship has extended, it has also become more complex, and in some ways, more stressful. We know that the cancer experience doesn’t end when the treatment does. Cancer-related side effects can show up late and last throughout life. And even if you never experience these late effects, just knowing that they may occur can add to existing anxiety.
Now more than ever, you deserve to know what to expect as you move forward after cancer. Be assertive in getting information and guidance from medical providers, and enlist their help in creating a cancer survivorship care plan. Insist on good communication between your oncologist and your other physicians to ensure that if problems do arise, you have the benefit of someone who understands the late and long-term effects of cancer.
We know that the cancer experience doesn’t end
when the treatment does.
Stay informed about what’s new in cancer research and about ways to extend your cancer-free survivorship. Be vigilant about physical signs and symptoms, as well as cognitive and psychological changes, but try not to remain stuck in your identity as a cancer patient. In other words, resume your normal life, but don’t forget that you are a cancer survivor.
Right now, you’re probably thinking that this is easier said than done. You are not the same person you were – physically, emotionally, cognitively, spiritually – when you began this journey. You may feel fearful, anxious, depressed, or simply unmoored. This is normal. Survivorship is a period of transition. And transitions often require emotional adjustments. Be patient with yourself as you adjust to these changes.
Be patient, but also proactive. Seek out ways to bolster your physical, mental, and emotional well-being. Consider mindfulness, yoga, journaling, prayer, or other spiritual practices, as well as any pursuits that bring you enjoyment. Also, resume (or begin) some type of physical activity. The evidence supporting the benefits of exercise for cancer survivors’ physical, mental, and emotional health only continues to grow.
Emotional support is essential. You have likely identified those in your life who are good listeners and are able to help you feel better. Don’t feel disappointed if certain friends or family members aren’t exactly helpful during your recovery. Often, loved ones are not the best sources of support because they haven’t been in your shoes and don’t know how to give you what you need. For this reason, peer support can be invaluable. Connecting with other cancer survivors is a great way to give and receive encouragement and support. Your cancer care team can recommend local support groups or peer programs, or you can find peer support online though organizations like Imerman Angels (ImermanAngels.org).
If you find that you are unable to enjoy life in a meaningful way for a prolonged amount of time, don’t hesitate to seek professional help. It’s common for cancer survivors to experience depression, and many people need a little extra help in adjusting to life after cancer. A mental health counselor can help you get back on track and enjoying life again.
The cancer survivorship movement is growing. And more doctors are recognizing the need to improve the care we give survivors once treatment is over. While not everyone will become a long-term survivor, the number of people who do is increasing with every new medical advancement. If this is your reality, you may find it helpful to think of survivorship as a lifelong enterprise in which you, your illness, your treatment, and your life beyond cancer coexist with the goal of finding balance, acceptance, and hope.
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Jolene Rowe is the manager of Inpatient Social Work in the Department of Patient and Family Services at Moffitt Cancer Center in Tampa, FL. She supervises social workers in various disease site programs, oversees graduate student training, and develops and coordinates psycho-educational and therapeutic programs for patients and families.
Making Sure the Kids Are All Right
How to Help Your Children Adjust to a
Loved One’s Cancer Diagnosis
by Crystal Zelman, LCSW, CCLS, RPT
Children are super resilient. They are amazing beings with their own thoughts, feelings, experiences, ways of coping, and support systems. With that said, however, most parents have a strong and instinctive desire to protect their children, especially from hearing the words, “I have cancer.”
While wanting to shield children from tough stuff like cancer is a natural inclination, I would like to propose an alternative approach. Rather than shelter them, prepare children with the tools they’ll need to walk through their thoughts and feelings around a loved one’s cancer diagnosis.
Children who grow up in families that practice open, honest, age-appropriate communication are being given the gift of positive modeling. When parents model healthy coping tools, such as talking about their feelings and experiences, children notice and learn that it’s OK to trust, rely on others, ask for help, express their feelings, and be open and vulnerable. On the other hand, when parents model secret-keeping and minimal expression, children also pick up on those cues, and they begin believing they must hide their thoughts and feelings as well. This cuts them off from potential support, comfort, and answers to their questions from the adults in their lives.
Children can and do adjust to a loved one’s cancer diagnosis. They figure out how to navigate changes in schedules, caregivers, time with friends, extracurricular activities, roles, and responsibilities.
Children can and do adjust to a loved one’s cancer diagnosis. They figure out how to navigate changes in schedules, caregivers, time with friends, extracurricular activities, roles, and responsibilities. While children may experience a range of different emotions, such as sadness, fear, anger, and hope, when dealing with a loved one’s cancer, it’s the task of the helpful adults in their lives to offer them positive ways to cope with these emotions.
Give them permission to talk to their teacher, guidance counselor, or friends. Ask if they’d like to pick out a new journal or sketchbook. Invite them to go for a walk or a hike with you. Give them limited, either/or choices to help them feel more in control. Offer to talk with them, listen to them, and answer their questions. Invite and encourage age-appropriate expression through pretend play, art, or open dialogue.
Children also benefit from being told what they can expect. For example, if a parent is going to have an inpatient hospital stay, it’s important to
explain the upcoming changes in routine and caregivers;
share ideas about staying connected with their loved one (for example, phone conversations, video chats, or hospital visits);
prepare them for visits through the senses (what will they see, hear, or smell; what can they touch or not touch);
offer them the option to bring an item (such as a card or stuffed animal) to their loved one;
and give them a choice about when, or whether, to visit.
Through honest and open communication, you can use this experience with cancer to strengthen the parent-child relationship, give children a sense of inclusion and belonging, bolster your child’s ability to cope with life and their feelings, and, most importantly, teach your children that they can handle difficult things that happen in life, including their own feelings.
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Crystal Zelman, owner and clinician at Morris County Play Therapy in Denville, NJ, is a registered play therapist, licensed clinical social worker, and certified child life specialist. She has a strong background in supporting children and adults through grief, facilitating the arts and crafts grief groups at Camp Clover, a children’s bereavement day camp in Warren, NJ. She is also a part-time lecturer at Rutgers University in New Brunswick, NJ, and a KRI certified Kundalini yoga instructor.
NFL Hall of Famer Jim Kelly
Takes Down Head & Neck Cancer
by Kaylene Chadwell
NFL Hall of Famer Jim Kelly is known as one of the top quarterbacks in the history of professional football. He played for the Buffalo Bills for 11 remarkable seasons, leading the squad to the playoffs eight times and tabbing four consecutive Super Bowl appearances from 1991 to 1994. During his career, the Bills were one of the most successful teams in the NFL, boasting a dangerous offense led by Jim himself.
It’s easy to see the lasting impact he had on Buffalo and on the NFL. In 2001, he became the first and one of only two Bills players to have his number (12) officially retired. Nicknamed “Machine-Gun Kelly,” Jim was known for running Buffalo’s famous no-huddle offense, racking up an impressive 35,467 passing yards, 237 touchdowns, and 2,874 completions throughout his career, and stamping his name all over the NFL record books. He still holds the all-time NFL record for most yards gained per completion in a single game.
The diagnoses that tested his
Considered one of the toughest quarterbacks in football history, Jim Kelly became known for his on-field motto, “You have to be ‘Kelly tough,’” meaning being tough not just physically but also mentally. In 1997, that motto took on a new meaning when Jim’s son, Hunter, was diagnosed with Krabbe disease (also known as globoid cell leukodystrophy) as an infant. Heartbreakingly, he passed away at the age of eight, but lived five years longer than doctors had predicted.
Again in 2013, Jim’s toughness was tested when he was diagnosed with squamous cell carcinoma in his upper jaw. “The first thing I did when I left [the doctor’s office], I was driving home, and I pulled off to the side of the road and I just started crying,” Jim reveals in a recent interview with Coping magazine. “It wasn’t because of me worrying about my life. I was more worried about how I was going to tell my wife and my two daughters. How am I going to tell my daughters that have already lost their brother and my wife who lost her son? I knew the toll that took on my family. And here’s a chance they could lose me to cancer.”
“You go through tough times in your life, everybody does, but it’s the attitude you have and the will to keep fighting through the difficult times.”
Jim had surgery that June to remove the cancerous cells in his jaw. His doctors declared the surgery a success. But less than a year later, in March 2014, Jim received devastating news – his cancer was back. This time around, he would need aggressive chemo and radiation.
He credits his wife, two daughters, and five brothers for being instrumental in helping him stay positive and “Kelly tough” through both rounds with cancer. “I had a great team,” Jim shares. “My wife and my two daughters, not one time did they ever walk into my room with a frown on their face. They always walked in with that attitude that they were going to make my day better.”
On making it through treatment
To treat his cancer the first time around, doctors removed Jim’s whole left upper jaw, along with his teeth. He now wears a removable prosthetic jaw and teeth that allow him to eat, drink, and speak normally.
When his cancer recurred, surgery wasn’t an option due to the location of the tumors in the base of his skull. Instead, he endured more than 35 radiation treatments, along with aggressive chemotherapy. In addition to losing his hair, the treatment caused him to lose 70 pounds from his large, athletic frame. “For five days a week, you go through radiation treatments, and then four bouts of chemo,” Jim says. “That in itself is enough to throw anybody down.”
However, no matter how difficult the journey became, Jim’s positivity shined. “It’s not easy, but it’s your attitude that you have about going out there, fighting, and never giving up,” Jim says. “My attitude has been that way ever since I was little. It’s how we were brought up in a family with six boys. You go through tough times in your life, everybody does, but it’s the attitude you have and the will to keep fighting through the difficult times. This was just one of those times in my life that I had to bounce back up. I’ve had to do it many times before.”
Jim credits his wife, Jill (pictured with him here), for helping him stay positive during treatment.
Three months after completing his final treatment, Jim was declared cancer-free. However, he will continue going in for MRIs every three months for the rest of his life to make sure the cancer doesn’t come back. Though these tests can often be anxiety-provoking, Jim doesn’t let it get to him. “I’m staying positive,” he stresses. “It’s just what you have to do.”
A game plan to make a difference
A former quarterback, Jim is all too familiar with making game plans on the field. Recently, he took his expertise off the gridiron by teaming up with Merck, the Head and Neck Cancer Alliance, Support for People with Oral and Head and Neck Cancer, and Savor Health for the Your Cancer Game Plan awareness campaign to help people with head and neck cancer and their loved ones tackle their emotional, nutritional, and communication needs. Jim explains that the program is exactly what he needed five years ago when he was facing cancer.
“I am living proof that you do need a game plan,” Jim asserts. “If you are lost and if you do not know where to turn, we have a lot of answers for you. You don’t have to go on the internet and find thousands of things. Now there’s a game plan.”
As the founder of the Kelly for Kids Foundation and cofounder of Hunter’s Hope Foundation, making a difference is just what Jim does. It’s part of who he is. This is evidenced by another personal motto of his, one that holds special meaning for him as a cancer survivor: “Make a difference today for someone who is fighting for tomorrow.”
This is what Jim hopes to do through his latest awareness campaign. “If I can be an influence on others to never give up, to make sure they keep fighting, then that’s what I’m going to do,” Jim says. “Now I have my own game plan, and that’s to help other people and make sure they never, ever give up.”
Jim Shares How to Be “Kelly Tough” When Facing Cancer
When it comes to managing
side effects …
One of the things is just eating right and not putting so much junk into your system. I know to a certain point that’s a cliché because that’s what you should do anyway. But especially for somebody going through head and neck cancer, it is so important to eat the right things and put the right things in your body. For me, I was one of those guys that could eat pretty much anything and feel good about it. But once you start really eating well, it makes a big difference in how you feel.
For those facing cancer right now …
Keep fighting no matter what. Fight until the last day. Who knows if that’s going to be next week, two months from now, or twenty-five years from now? You just have to keep fighting and keep that positive attitude.
How friends and family can help …
The bottom line is your attitude, being positive. Walk into the room with the attitude that you’re going to make their day better by your presence, make their day better by what you say. Because I lived it, I know what it takes and how my family reacted to me when I was in the hospital. It helped so much.
On how cancer changes your
outlook on life …
As the old saying goes, don’t take things for granted. Now you look back and you cherish all those times that you were able to have. You reminisce more. You set more goals. I have a bucket list. My bucket list is filling up, which is good. I’m checking things off. I live each and every day. And I’ll tell you what, if the good Lord decides tomorrow is my day, then tomorrow is my day. I’m going out with a smile on my face because I lived a life that a lot of people only dream about. Yeah, I’ve been through some tough times, but we all have.
♦ ♦ ♦ ♦ ♦
To learn more about head and neck cancer and Your Cancer Game Plan, visit YourCancerGamePlan.com.
The Latest in Cancer Research from the American Society of Clinical Oncology
Research Highlights from the
2017 Cancer Survivorship Symposium
Cosponsored by the American Academy of Family Physicians, the American College of Physicians, and the American Society of Clinical Oncology
Three-Quarters of Survivors
Report Decreased Physical Activity
After a Cancer Diagnosis
A new survey of people treated for cancer finds that as many as 75 percent of survivors report reducing their physical activity levels following a cancer diagnosis, despite its proven benefits. Psychological barriers such as difficulty getting motivated and staying disciplined, along with fatigue and pain associated with cancer treatment, were identified as factors contributing to decreased activity.
“Many people associate cancer treatment with needing to rest, but we’re learning that moderate forms of physical activity can not only help patients feel better generally but also, in some cases, potentially improve their cancer outcomes,” says lead author Sally A.D. Romero, PhD, a postdoctoral research fellow at Memorial Sloan Kettering Cancer Center in New York, NY. “Our research sheds light on the reasons patients are unable to achieve their exercise and physical activity goals. We found that psychological factors – such as motivation and discipline – were associated with a decrease in physical activity.”
ASCO’s clinical practice guidelines recommend that providers encourage all cancer survivors to engage in a moderate level of physical activity after cancer treatment (in other words, 150 minutes of moderate aerobic exercise per week).
“The side effects of cancer treatment like fatigue and pain can be addressed relatively easily, but the other reasons patients aren’t exercising can be more complicated, and we need to focus on those as well,” Dr. Romero says. “Our challenge as providers is to help our patients think about physical activity in new ways, while personalizing their care.”
Young Thyroid Cancer Survivors
Face Increased Risk of Heart
Conditions and Osteoporosis
In the U.S., thyroid cancer incidence is increasing more rapidly than any other cancer, and it is commonly diagnosed at a younger age than most adult cancers. A new study finds that younger survivors of thyroid cancer, those diagnosed before the age of 40, are at increased risk for hypertension, heart disease, and osteoporosis.
“Patients diagnosed with thyroid cancer often have an excellent prognosis and survival rate, especially those diagnosed at younger ages […]. But as the number of thyroid cancer survivors grows, more people are living with other serious health conditions resulting from treatment,” says the study’s lead author, Brenna Blackburn, mph, a member of the Hashibe Lab at Huntsman Cancer Institute in Salt Lake City, UT, and a PhD candidate at the University of Utah. “It’s important to understand these long-term risks so that we can […] inform how oncologists care for these patients from the onset of diagnosis.”
While such late effects are typically associated with aging, the authors speculate that younger thyroid cancer survivors are likely being treated with more aggressive treatments, including surgery, radioactive iodine therapy, external-beam radiation, and hormone therapy.
“Younger patients are often considered healthier, and it’s assumed they’re better equipped to handle aggressive types of therapy that have been linked to heart damage, such as radiation and hormone therapy. But we’ve seen that they’re also developing worrisome side effects later,” Ms. Blackburn says.
Nearly Half of Partners of
Young Breast Cancer Survivors
A new analysis finds that 42 percent of partners of young breast cancer survivors experience anxiety, even several years after their partner’s cancer diagnosis. Researchers note that ineffective coping strategies, parenting concerns, and other factors were associated with anxiety. “As the number of breast cancer survivors continues to grow in the United States, interventions targeting the concerns of partners – and entire families – are needed to help them cope with the inevitable and often unanticipated changes that come with a cancer diagnosis,” says lead study author Nancy Borstelmann, mph, msw, licsw, director of social work at Dana-Farber Cancer Institute in Boston, MA.
Research Highlights from the
2017 Genitourinary Cancers Symposium
Cosponsored by the American Society for Radiation Oncology, the American Society of Clinical Oncology, and the Society of Urologic Oncology
In Advanced Kidney Cancer,
Antibiotic Use Lowers Efficacy
A new retrospective analysis suggests that immunotherapy may be less effective in people who receive anti-biotics less than a month before starting treatment. In the study, cancer worsened more quickly in such survivors than in those who did not receive antibiotics.
The researchers believe that the negative effect of antibiotics is due to the antibiotics wiping out the “good bacteria” in the gut. Earlier research in mice has suggested that certain microorganisms dwelling in the gut interact with the immune system in a way that seems to help immune checkpoint inhibitors work better. “These early findings show that doctors prescribing cancer immunotherapy should pay closer attention to antibiotic use,” says lead study author Lisa Derosa, MD, a PhD candidate at the Gustave Roussy Cancer Institute, Paris-Sud University in Villejuif, France. “This research may be relevant to more than just kidney cancers, as antibiotics are commonly prescribed to patients with cancer to prevent or treat infections related to cancer treatment or a weakened immune system.”
Some Survivors Experience
Long-Term Tumor Control Even After
Stopping Immunotherapy Early
Early findings from a new study appear to challenge the current standard practice for immune checkpoint inhibitor therapy – continuing treatment until cancer worsens. Among people with advanced kidney cancer who stopped PD1/PD-L1 immuno-therapy early due to side effects, 42 percent had a durable response, meaning they were able to remain off additional systemic therapy for six months or more. More broadly, this insight may help alleviate some patients’ concerns about the impact of discontinuing immunotherapy.
“In medicine, we are constantly balancing the benefits and risks of any given treatment,” says lead study author Rana R. McKay, MD, an assistant professor of Medicine at the University of California San Diego School of Medicine in San Diego, CA. “This is a small study, and while our findings need to be validated in a larger group of patients, it underscores that in some cases, immunotherapy can have lasting benefits even after treatment discontinuation.”
Blood Test Uncovers Potential
New Treatment Targets in
Advanced Prostate Cancer
Analysis of free-floating cancer DNA from blood samples has yielded leads for new prostate cancer treatment targets. Using a commercially available “liquid biopsy” test in men with advanced prostate cancer, researchers found several genetic changes in cell-free, circulating tumor DNA (ctDNA).
Cell-free ctDNA provides comprehensive information about all the different genetic changes in the tumor. Today, treatments can sometimes be tailored to the genetic changes in a tumor, but these changes evolve over time. The cell-free ctDNA tests can be used to track new genetic changes, and this information can be used to stop treatment to which resistance is emerging and to switch the person to another treatment. The changes in ctDNA found by the blood tests were similar to those previously reported in analyses of tumor tissue specimens, suggesting that ctDNA testing may be a viable alternative to tissue biopsy.
Research Highlights from the
2017 Gastrointestinal Cancers Symposium
Cosponsored by the American Gastroenterological Association Institute, the American Society of Clinical Oncology, the American Society for Radiation Oncology, and the Society of Surgical Oncology
PET Scans Can Inform and
Improve Treatment for People
with Esophageal Cancer
Findings from a federally funded clinical trial point to a new way to improve the outlook for people with esophageal cancer: using PET scans to assess tumor response to initial chemotherapy may allow doctors to tailor further chemotherapy.
People with stage II–III esophageal and gastroesophageal junction cancers typically receive five and a half weeks of chemotherapy with radiation, followed by surgery. Use of chemoradiation before surgery has been shown to improve survival compared to surgery alone. Several chemotherapy regimens are available for use during chemoradiation, but doctors have no reliable method to predict whether a particular chemotherapy will be effective in a given person.
“In this study, we are adding induction chemotherapy before chemoradiation and showing that using PET scans after the induction chemotherapy to assess response can help doctors make quick course corrections to maximize patient benefit from chemotherapy,” says Karyn A. Goodman, MD, a radiation oncologist at the University of Colorado School of Medicine in Aurora, CO. “Although our approach does lengthen a patient’s time before surgery, we found that assessing treatment efficacy by PET scans can improve the efficacy of the treatment as shown by the ability to achieve a pathologic complete response, meaning there were no traces of cancer in the tissue specimen taken at the time of surgery.”
Physical Activity Linked to Longer
Survival in Advanced Colorectal Cancer
A new analysis suggests that people with metastatic colorectal cancer who are more physically active fare better than those who are less active. In a large clinical trial, people who at the time of starting chemotherapy reported engaging in physical activity equivalent to 30 or more minutes of moderate exercise daily had a 19-percent reduction in mortality and a 16-percent reduction in cancer progression.
In a secondary exploratory analysis, researchers found that more time spent in non-vigorous physical activity, such as walking or lawn mowing, was linked to improved survival. People who spent five or more hours per week engaged in non-vigorous activity had a 25-percent reduction in mortality. However, there was no association between vigorous physical activity, such as running and playing sports, and cancer outcomes.
Watch-and-Wait Approach for
Rectal Cancer Appears an Option
for More People
Data from a large observational study suggests that omitting surgery in strictly selected rectal cancer survivors with a clinical complete response does not compromise outcomes. The three-year survival rate among people who received watch-and-wait care after initial cancer treatment was 91 percent, which is similar to historic survival rates for people who undergo surgery. This is welcome news, as rectal surgery carries the risk of distressing complications, such as colostomy and urinary and sexual problems.
In most countries, people with stage II–IV rectal cancer receive chemotherapy and/or radiation before surgery. Although in about 20 percent of survivors the tumor completely disappears after pre-surgery therapy, it is not standard to re-assess or “restage” the tumor to see if surgery is still needed.
“Some people with rectal cancer undergo surgery after chemoradiation therapy, even though it may not be necessary,” says Maxime van der Valk, MD, one of the study coordinators of the International Watch and Wait Database Consortium and Leiden University Medical Center in Leiden, Netherlands. “From the data we have now, it seems that watch-and-wait may be safe in selected patients with rectal cancer, but it is too soon to say whether this approach should be routinely offered.”
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ASCO represents more than 40,000 oncology professionals who care for people living with cancer. Visit asco.org for more highlights from these Symposia. ASCO’s patient information website can be found at cancer.net.
When Life Gives You Cancer,
Find the Celebration
by Shannon Doan-Duff
Only 11 weeks after my dad was diagnosed with advanced colon cancer, I too became a member of the cancer club. I had melanoma. My family went from being a “normal” family (normal being relative for those who know us) to a family living with cancer. Living, though, took on an entirely different meaning after cancer entered the picture. Living with cancer is a juggling act – juggling the joy of life with the fear of death. Juggling the joy of small victories, of clear margins or clear scans, with the fear that one day the cancer will rear its ugly head again.
With my cancer diagnosis, I was forced to face my own mortality and the very painful possibility of leaving my daughter without a mother, my husband without a wife, and my parents without a child. Talk about a gut-wrenching reality check. The next week was agony as my family and I waited to find out exactly how advanced my cancer was.
However, I am a lucky one. Yes, I said that. Lucky. Unlike my dad’s colon cancer, my melanoma was caught early. While I will always be at risk for recurrence, my chances of long-term survival are excellent, and no matter what melanoma wants to throw at me, I’m going to keep swinging. Quitting is not an option. Losing is not an option. I may die of cancer one day, but I absolutely will not die from it while I am still living.
I may die of cancer one day, but I absolutely will not die from it while I am still living.
The question then became what to do with the second lease on life that I had been given. The answer was simple – I realized that the best way to help yourself get through a hard time is by helping someone else get through a hard time of their own.
I realized that I had been given the gift of survival, and I wanted to pass that gift along to other survivors. Suddenly, living with cancer became less of a juggling act and more of a celebration. I began to see cancer as a sentence to live, not as a sentence to die.
I knew that I wanted, and needed, to do something, but I wasn’t sure where to start. So, I reached out to the American Cancer Society, whose mission is to help people with cancer celebrate more birthdays – to give the gift of survival. I began volunteering at a local ACS Hope Lodge, serving dinner to cancer survivors, and their families, who were staying there while undergoing treatment.
Since I began my Hope Lodge mission in March 2014, I have traveled more than 10,000 miles back and forth from my home in eastern Kentucky to the Hope Lodge in Lexington. And I’ve purchased, prepared, and served 5,000 meals to cancer survivors and their caregivers at the lodge. I’ve even begun doing advocacy work for the cancer survivors in my own little community in eastern Kentucky. Through all of this, I’ve learned that there truly is life after a cancer diagnosis, and that it can be far more beautiful and meaningful than you would ever expect.
When things happen to us, like cancer, we can choose to view them as a tragedy. Or we can find the celebration in it. We must learn to love life, even when sometimes it feels as if life doesn’t love us back.
♦ ♦ ♦ ♦ ♦
Shannon Doan-Duff is a melanoma survivor and volunteer for the American Cancer Society’s Hope Lodge in Lexington, KY.
How to be a Friend to Someone with Cancer
by Holly Bertone, CNHP, PMP
“Hi, friend. I wanted to let you know I have some bad news. I have cancer.”
This moment has the potential to change everything, even between the closest of friends, as the listener struggles with what to say or do next. But it shouldn’t. I get that you feel stuck between wanting to say the right thing and not wanting to say the wrong thing. You want to offer help, but also respect my privacy.
Here’s what I need you to know. While going through cancer treatment, I may be needy; I may push you away. I might be depressed and angry about the diagnosis, and I’m probably obsessed with finding out everything I can about my disease. These are all normal reactions and emotions. In this moment, what I need from you is to listen.
♦ Don’t offer advice unless asked specifically. Everyone’s diagnosis is different. Everyone’s treatment is different. This is a very personal journey, and the decisions I make are between me, my doctors, and my god.
♦ Don’t tell me that I will be fine. I may not be. I might be facing mortality. Of course, you mean well, but those words belittle the severity of the treatment I’m facing. Don’t tell me you know what I am going through unless you’ve been through it too. Tell me you love me. Tell me you’re here for me. Tell me you’ll help take care of my family.
♦ Do encourage me to get a second opinion if I’m not happy with my doctor. Do encourage me to go to the doctor in the first place if I find a weird lump or something isn’t quite right.
♦ Know that you can’t take the cancer away from me. You can’t take away the pain, the anger, the fear. I sometimes think that loved ones have a tougher time with cancer than does the person who’s been diagnosed. The survivor gets to fight every day, and that can be empowering. You’re forced to watch your loved one go through something horrible while being unable to rescue them from it.
Don’t tell me you know what I am going through unless you’ve been through it too.
♦ Send me a card or an email. Make it cheery or funny. I need to laugh. Laughter kills cancer cells – or at least it feels like it does.
♦ When I post on Facebook, give me a like or a word of encouragement. Even if I’ve been in treatment for a while and it doesn’t seem like I have anything new to say, I need to see that my family and friends are in solidarity with me.
♦ Offer to help in specific ways. Offer to drive me to appointments and take notes. Do something for my kids, do the laundry, wash my dishes, research organizations that help cancer survivors (for example, did you know there are groups that clean cancer patients’ homes for free?), hire a caretaker … the list is endless. If I put up a strong front and say I don’t need help, then give me two choices of how you are going to help: “Do you want me to bring over dinner on Monday night or stop by on Tuesday and help with the laundry?”
♦ Remember my spouse and children. They need your support just as much as I do, if not more. Give them some time off. Give them a treat. Let them talk or vent.
♦ Be conscientious with your gift giving. If I’m going through chemo, my sense of smell is going to be altered. Don’t send flowers or candles. These “good” smells might make me feel nauseated. Speaking of smells, please don’t wear perfume when you visit me. My sense of taste will likely be altered too, and I may not have an appetite. My family will still need to eat, though, so please feel free to feed them. If you want to buy something, send a care package with healthy food and snacks. I’m also going to need practical items like a surgery pillow, Biotene, cleansing wipes, magazines, or comfy slippers.
♦ Pay attention to my cues when you speak with me. Follow my lead, and respect my wishes.
Most important, you can be patient with me. You can pray. You can just be. That’s what I need the most.
♦ ♦ ♦ ♦ ♦
Holly Bertone is a breast cancer survivor and patient advocate who has published three books on cancer.
You can find Holly blogging at pinkfortitude.com, where she writes about healthy living and life after cancer.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, January/February 2017.
Supportive Care for Lung Cancer Survivors
by Christie Pratt-Pozo, MA, DHSC
Advances in early detection and the development of new treatment options have increased survival rates for people with lung cancer over the last decade. However, many of these improvements are associated with long-term side effects. Advances in supportive care have changed the cancer experience for many people. Supportive care is a valuable part of the success of treatment and helps to provide positive outcomes.
Supportive care is a term that refers to treatment that aims to decrease or eliminate symptoms associated with cancer. The goal of supportive care is to maximize comfort, minimize suffering, and ensure the highest quality of life. Supportive care focuses on treating cancer-related symptoms, preventing and managing treatment-related side effects, recognizing and supporting psychosocial distress, and helping to develop strategies for improving quality of life. Comprehensive supportive care may address symptoms that occur at diagnosis and during or after treatment.
Being diagnosed with lung cancer is a life changing event that can have a profound effect on your physical, emotional, and psychosocial well-being. There are many symptoms and side effects associated with lung cancer diagnosis and treatment. These symptoms can interfere with your ability to function and perform daily activities, decreasing your quality of life, especially if symptoms are ignored and go untreated.
People with lung cancer have more unmet supportive care needs than those with other cancers.
People with lung cancer have more unmet supportive care needs than those with other cancers. Lung cancer is often associated with a heavy disease burden, but supportive care interventions can improve well-being and survival for lung cancer survivors. Intervening early may decrease unnecessary suffering and enable you to feel strong enough to be an active participant in your own cancer care. The goal of supportive care is to provide you with the best quality of life throughout the cancer experience, enabling you to perform daily activities and engage in activities that bring you joy and happiness.
Multidisciplinary healthcare teams are integral to ensure a holistic treatment approach, treating the whole person and not just the cancer itself. The primary treatment team includes a physician (medical oncologist, radiation oncologist, or thoracic surgeon, depending on the course of treatment) and a primary nurse. As supportive care needs emerge, you may be referred to other members of the team, such as social workers, psychiatrists, palliative care or supportive care clinicians, or dietitians, to make further assessments and supportive care recommendations.
However, the most important member of the treatment team is you. Open communication with clinicians about any symptoms or side effects makes you a partner in your care and helps the healthcare team understand and recognize the onset of side effects. A comprehensive supportive care plan with the healthcare team enables the highest possible mental, emotional, and physical well-being. The goal includes controlling symptoms related to the lung cancer and treatment, and concurrently providing psychosocial care to improve quality of life.
Effectively communicating any changes experienced can prevent unnecessary suffering or interruption of treatment. With the growing research and knowledge of these side effects, medications and self-help strategies can be recommended to help prevent symptoms before they occur. However, if new symptoms arise, effective treatments can be prescribed to help control them. It is important to know that symptoms can be managed successfully if they are addressed and treated early.
Communication is a vital part of symptom management. Symptom documentation in a journal is an excellent way to participate in your care and should be an integral part of the cancer experience. Documenting the onset of new symptoms and being able to effectively communicate this information can have a major effect the success of treatment. Daily symptom tracking, especially while receiving treatment, can help you identify any changes in your physical, psychological, and emotional health. Maintaining this crucial information can help your doctors assess and manage your supportive care needs. The ability to reference and chart the progress of specific issues enables you to have an open dialogue with your team.
It’s important to prepare for, identify, and recognize symptoms early and communicate about symptoms to decrease any unnecessary suffering or interruption in the course of treatment. Communication with your treatment team can help prevent and manage symptoms and help future patients by creating a side effect profile for each specific treatment. Clinicians continue to gain a better understanding of the prevalence of specific symptoms and are developing effective strategies to better manage lung cancer symptoms.
♦ ♦ ♦ ♦ ♦
Excerpted with permission from Lung Cancer Choices, 3rd Edition, Copyright 2016 © Caring Ambassadors Program, Inc., lungcancercap.org
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, January/February 2017.
The Power of Acceptance
Learning to accept my post-cancer impotence freed me to experience extraordinary intimacy, beyond anything I had even considered possible before cancer knocked on my door.
by Michael J. Russer
In October 2011, I was diagnosed with prostate cancer. Given that five other members of my immediate family have perished from various forms of cancer, I did not take this lightly. Despite the encouraging biopsy results that indicated a slow-growing, early-stage cancer, I chose to listen to my intuition and insisted that my doctors remove my prostate immediately. It’s a good thing they did because the post-surgery tissue studies showed that the cancer was extremely aggressive. So aggressive, in fact, that they had to do a follow-up of intensive daily radiation for seven weeks.
Because of surgery and these treatments, I was rendered clinically impotent. For many men, this is viewed as a fate worse than death. (I’ve actually had men tell me that.) I fought this reality with everything I had – especially considering I had just come out of a 26-year marriage, of which the last 11 years were celibate. A not uncommon outcome of many baby-boomer marriages.
So when I finally met my current life partner a year later, and it became clear we were going to be more than just friends, I was still determined to make things work like they used to, if you know what I mean.
My partner is a beautiful and conscious woman who had never been with a man affected by erectile dysfunction. Her adventurous spirit made her open to exploring what might be possible in the intimacy department. Neither of us really knew what it meant to delve into other ways of being intimate, but we were more than willing to find out.
We wanted to make our first intimate time together special. So I booked a night at a resort about a two-hour drive from where we live. Upon arrival, we were greeted with an incredible suite that had the biggest and highest four-poster bed I’ve ever seen, a stunning fireplace, and our own private natural hot springs tub on the adjoining deck. Our jaws were hanging in awe as we fully took in what awaited us.
The only problem was my
excitement failed to show
where it counted most.
I still hadn’t given up the notion of being able to “perform” for this wonderful woman. And to prove my commitment to that end, I brought the full complement of erectile aids money could buy. This included the highest recommended doses of Cialis and Muse, which is a very expensive (and potent) intraurethral suppository. And just in case everything else failed, I also brought a penis vacuum pump, which is supposed to work no matter what.
Keep in mind that when we first lay down together on that incredible bed, it had been over 12 years since I had experienced sex with anyone. To say I was excited is the world’s greatest understatement. The only problem was my excitement failed to show where it counted most. We spent about an hour of wonderful and gentle foreplay using all the pharmaceuticals at our disposal. However, despite all that, it was abundantly clear things just were not happening in the erection department.
By this time, little beads of sweat had started forming on my bald head, underscoring my growing performance anxiety. Still being the forever optimist, I said to her, “Sweetie, no problem. I brought the ‘failsafe’ – the vacuum pump. And it has to work because it’s based on physics!” This was spoken with a bit of bravado, more to mask my growing apprehension than to offer hope or encouragement in regards to our rapidly deteriorating chances of enjoying intercourse.
With renewed enthusiasm, I sat on the edge of the bed and started pumping for all I’m worth. After a minute or so, I’m starting to see and feel results! YES! That is, until I inadvertently sucked in my left testicle, at which point I doubled over in pain.
Once I stopped fighting and resisting what simply was,
once I surrendered, I opened myself to worlds of experience
and insights I had no idea even existed.
Now, sweat was pouring down my entire body, and my darkest fears seemed to come true as I sat there, shoulders hunched over in abject defeat and despair. All I heard was that voice in my head that said, “It’s over; it’s over before we even got started.”
Then, at my very lowest point, something profound and extraordinary happened. I finally, to the very core of my being, fully accepted my impotence and simply stopped fighting it.
I turned around and looked into her eyes and said in a very quiet voice, “I’m done. I’m done with all of this. Let’s just lie together and see what happens.” Well, what happened was we made love for at least four hours (with me being completely flaccid and not using any aids whatsoever). Then, the next morning, we made love for another two hours or so until it was time to head back home. What we experienced was so extraordinary that it is now the subject of numerous radio interviews, speeches, a TEDx talk, and a book for cancer survivors and their partners on how to achieve deep, fulfilling intimacy in the face of cancer.
Here’s what I discovered through this whole process. Accepting what is is really just surrendering to the possibility of transformation. Once I stopped fighting and resisting what simply was, once I surrendered, I opened myself to worlds of experience and insights I had no idea even existed. Including intimate experiences on all levels that far exceed what either of us had known or even considered possible before cancer knocked on my door.
In most cultures, surrender is usually equated with giving up, yielding to the power or control of another, allowing yourself to be dominated; essentially, it’s showing weakness. No wonder it has such a negative vibe, especially for men. It appears to be the very opposite of heroics, or efforts put forth by unstoppable individuals who eventually prevail no matter what the obstacles. We all love the hero and, at best, distance ourselves from the “loser,” the one who surrenders.
However, acceptance is the other side of the surrender coin. Acceptance can be far more empowering and transformative than even the greatest feats of heroics. Opening yourself up to this shift in how you look at and apply acceptance in your life can make a huge difference. This is especially true for those dealing with the challenges of cancer. It can be the difference between living a life based on fear and uncertainty and one that is full of self-expression and unimagined possibilities, regardless of circumstances.
In this context, it should be clear that my acceptance was anything but a sign of weakness. Without it, I would have remained a very frustrated, angry man, wondering how fate could have been so cruel. Through my acceptance, my partner and I now have an intimate life that is far beyond our wildest dreams.
Giving Up vs. Acceptance
There is a big distinction to be made between giving up and accepting what is. Giving up implies hopelessness, resignation, and a sense of powerlessness. Accepting what is is often the threshold to possibilities you can’t even imagine. This kind of acceptance reflects a much more empowering form of surrender. When you accept what is, you are no longer fighting the reality of the isness, which frees you up to explore, discover, and experience other wonders. Including those that may not even have been on your radar of what’s possible.
Culture imprints often make us believe that we must do whatever it takes to achieve a certain end, and that anything short of this is a failure, or defeat. I’m hoping that you now see this is not true. Cancer and its treatment will most certainly affect the circumstances of everyone who experiences it. However, we do have the power, through acceptance, to transform what at first seems to be an insurmountable tragedy into incredible triumphs. And, just perhaps, end up in a place that is better than where we were before diagnosis.
Here’s what I’ve learned from my journey so far. Within every challenge are the seeds of far greater possibilities. And the best things in life are not those we make happen, but are those that we allow to show up because we simply got out of the way.
♦ ♦ ♦ ♦ ♦
Michael Russer is a fully impotent prostate cancer survivor and an international speaker, author, and thought leader in the field of advanced human sexuality, intimacy, and relationships. He and his life partner, Jacqueline Lopez, speak pro-bono to cancer survivors and their partners all over North America. They also consult the medical community on how to best communicate with cancer survivors about the disease’s impact on their intimacy. Their latest book, Return to Sex & Intimacy – For Cancer Survivors and Their Partners, is scheduled for release in March, 2017.
Check out Michael’s TEDx Talk, “Creating Extraordinary Intimacy in a Shutdown World,” at MichaelRusserTEDx.com.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, January/February 2017.
Bridging the Gap between Ancient Healing
and Modern Medicine
by Shelly Latte-Naor, MD, and Jun J. Mao, MD, MSCE
Claire was diagnosed with breast cancer while in her early 50s. In the months following her diagnosis, she underwent surgery, radiation therapy, and chemotherapy. While battling the physical, psychological, and social side effects of her treatment, she diligently followed her doctor’s instructions and her nurse’s advice. She asked questions at every appointment and stayed informed through various online patient resources. However, during the course of her treatment and in the months that followed, she found herself increasingly faced with questions that did not seem to have easy answers.
While Claire and her oncologist were content with the successful completion of her cancer treatment, Claire was left with many physical side effects that, while hardly as dangerous to her health as the cancer was, still significantly affected her ability to return to her normal life. Since beginning treatment, she had faced persistent fatigue and was still unable to sleep through the night. She also found herself worrying about the future, dreading the thought of a potential cancer recurrence.
She questioned her lifestyle and every detail of her diet, fearful of not doing “the right thing” to stay healthy. When looking for answers and relief, she became overwhelmed with well-intentioned advice from friends and family, who were constantly sending her information about natural supplements and alternative treatment options. While Claire was curious about ancient healing practices, she didn’t want to embark on a quest of trial and error to find something that helped. She wished she had someone to guide her as she explored these complementary and alternative treatments.
Integrative medicine provides supportive care that goes hand-in-hand with conventional cancer care. There is no promise of a cure, rather a focus on widening the angle of what “care” means in the cancer setting.
Claire’s story is shared by many cancer survivors who eventually find their way to integrative medicine. They come at all stages of their treatment looking for tools to address the symptoms of their cancer, help managing the side effects of their treatment, and advise on how to reduce their risk of cancer recurrence. Many are looking for someone to help them navigate the plethora of supplements, diets, and health regimens that seduce with promises of a “natural” cure.
The field of integrative oncology, while still young, has entered the mainstream of cancer care and is represented at most National Cancer Institute-designated cancer centers. One of the aims of this field of medicine is to clearly delineate the distinction between alternative therapies and integrative or complementary therapies. One clear distinguishing factor is that integrative medicine provides supportive care that goes hand-in-hand with conventional cancer care. There is no promise of a cure, rather a focus on widening the angle of what “care” means in the cancer setting. This includes aspects of health that are rarely addressed in our highly specialized medical system, such as cancer-related fatigue, fear of recurrence, and the psychological impact of stress. The recommendations of integrative oncology specialists are based on the best available scientific evidence, and we put safety first.
Dr. Jun Mao
Alternative medicine, on the other hand, often rejects conventional care and lures people with promises of an easy and natural way to cure cancer. Very often, these promises are not based on sound scientific findings, but on ominous, unexamined theories and a variety of miraculous-sounding anecdotes that spark tremendous hope in anyone who hears about them.
Meanwhile, integrative medicine centers, like our service at Memorial Sloan Kettering Cancer Center in New York, NY, are busy researching traditional healing methods, as well as natural products, for their potential role in cancer care. Through ongoing studies, we are examining the role of acupuncture in the treatment of chemotherapy-induced neuropathy and of insomnia, two very common problems for cancer survivors. We are also comparing strenuous yoga with restorative yoga to pinpoint which aspects of these practices offer the greatest benefits for cancer survivors.
Alternative medicine, on the other hand, often rejects conventional care and lures people with promises of an easy and natural way to cure cancer. Very often, these promises are not based on sound scientific findings.
There is increasing evidence to support the use of complementary treatments for a variety of cancer related symptoms and side effects – treatments that can help people like Claire. For example, the Journal of Clinical Oncology recently published a study demonstrating that a six-week mindfulness meditation class decreased fear of recurrence, as well as fatigue, in breast cancer survivors. Similarly, mindfulness-based cancer recovery, a psycho-social intervention using principles of mindfulness, has been found to have a long-lasting beneficial effect on the psychological well-being of breast cancer survivors. Additionally, in women with breast cancer, acupuncture was found to alleviate symptoms, such as joint pain and hot flashes, specifically related to the use of hormone treatment.
Complementary therapies may provide relief at every stage of treatment across the cancer spectrum. People undergoing active chemotherapy can benefit from acupuncture for reducing nausea and vomiting. When facing or recovering from a surgical procedure, massage therapy can alleviate pain and anxiety related to surgery. A recently published study shows that prostate cancer survivors who experienced insomnia during their radiation treatment found relief in the ancient meditative martial arts form Tai Chi.
Integrative oncology specialists can help you supplement your cancer treatment or recovery with safe, non-invasive complementary treatments. They can help you vet the abundance of health-related information you encounter and work with you to come up with a treatment plan that aligns with your health philosophy while also following your oncologist’s regimen. In short, integrative oncology effectively bridges ancient, traditional healing methods and state-of-the-art cancer treatments, ensuring that cancer survivors are able to benefit from the best of both worlds.
♦ ♦ ♦ ♦ ♦
Dr. Jun James Mao is chief of the Integrative Medicine Service, as well as the Laurance S. Rockefeller Chair in Integrative Medicine, at Memorial Sloan Kettering Cancer Center in New York, NY. He is also president of the Society for Integrative Oncology. Trained as both a family physician and an acupuncturist, Dr. Mao combines Western and Eastern approaches to cancer pain management. Dr. Shelly Latte-Naor is an integrative medicine physician at Memorial Sloan Kettering. She specializes in mind-body medicine for stress management and resilience building.
Write to Heal
Expressive Writing for Adults with Cancer
by Nancy Morgan
“You want me to do what?"
Convincing people with cancer to write about their thoughts and feelings as a coping strategy can be a hard sell. From that first elementary school essay, for many people, writing means deadlines, criticism, comparison, rejection. “I can’t write,” they say. “I’m not a writer. No thanks.”
Expressive writing is different, as it evokes unique and personal perspectives on life. Feelings, especially those related to a health crisis, often stay buried, unexamined, causing distress. Could the simple act of writing alleviate discomfort? Research suggests it can. It’s as easy as putting pen to paper, or fingers to a keyboard, to manage stress, make sense of new and confusing experiences, and find emotional balance.
For some survivors, the post-treatment period is the most difficult. Emotional trauma takes its toll. Interactions with dedicated medical and support staff, who have now become like family, happen less often after treatment. The change can be distressing. But writing about things like beloved childhood memories, your favorite places to travel, or activities that inspire you can help you remember who you were before cancer.
Could the simple act of writing alleviate discomfort?
Research suggests it can.
Inhibitions about writing vanish when people are offered the chance to say what they really feel. Forget the stiff upper lip motto. Let it out.
In one of my writing clinics, a woman in treatment asked, “I’m supposed to write about positive things about cancer, right?” She was wearing a t-shirt covered with smiley faces. I offered a different approach: “It might be more helpful to write about how you really feel. Giving yourself permission to let out fear, anger, and dreams set aside can be a great gift.” She appeared relieved.
Writing can help you...
make sense of a health
♦ create a script to practice what to say to loved ones
♦ guide friends as to what you really need
♦ weigh the pros and cons of treatment choices to figure out the best course of action for you
♦ escape (Try writing about a place you would rather be, and include all the sensory details.)
Research suggests that being compelled to write about feelings other than those we truly have isn’t helpful. Withholding what we need to say can increase stress. So, write about what is on your mind with clarity and full intensity. No one else needs to see it. If you decide to tear it up afterward, the benefits of processing your emotions through writing remain. The body relaxes. And the cathartic release that often follows offers great incentive to keep writing.
When you’re feeling stressed, go easy on yourself. Write about your favorite summer as a kid. When feeling courageous, write to confront cancer concerns. Find the words that help reduce cancer’s power over you. Funny stories? The best medicine! Mentors? How did they guide you? What life lessons can you apply to the challenges you face today? Writing offers a sense of control, something that can be in short supply when a cancer treatment regimen replaces your daily routine. Use writing to change the channel.
When should I write? How often? For how long? Many people think of journaling as a daily chore – like brushing your teeth. However, writing for coping happens when needed. When thoughts pile up and interfere with sleep, when feelings rise in the throat, distracting from responsibilities, jot them down. A sentence scribbled on a paper napkin at lunch may be all that is needed. Other times, your pen may take on a life of its own, and pages later, you feel a sense of closure. The issue is dealt with, making room for other matters – and a moment’s peace.
When should you start writing? How about now?
♦ ♦ ♦ ♦ ♦
Nancy Morgan is the writing clinician at Georgetown Lombardi Comprehensive Cancer Center in Washington, DC, and Director Emeritus of the Arts and Humanities Program and an adjunct faculty member at Georgetown University.
In Sickness and in Health
Facing Cancer Together as a Couple
by Susan Hedlund, MSW, LCSW
While a cancer diagnosis is given to just one person, it can have a ripple effect on everyone who cares about that person. For many couples, the challenges that accompany cancer diagnosis, treatment, and recovery can be difficult and long lasting. The words “in sickness and in health” take on an entirely new meaning when cancer enters the relationship.
A number of factors play a role in how couples deal with cancer. We know that couples who have higher levels of satisfaction in their relationship prior to diagnosis tend to cope better with illness than do couples who have prior relationship difficulties. We also know that couples with other life stressors (such as financial difficulties or family dis- harmony) may have more difficulty facing cancer. In addition, each person in the partnership may have different – even conflicting – ways of coping with the diagnosis.
The person diagnosed with cancer may initially feel fear. They may worry about how well they’ll tolerate treatment, if they’ll survive, or how all this is going to change their life. They may feel guilty about the stress that their cancer has brought into the relationship.
Good communication involves both talking and listening.
The well partner may feel helplessness, fear, sadness, and frustration. Partners may also feel guilty about their emotional reactions to the diag- nosis, and for having their own needs during this time. Partners may feel the pressure to be the primary helper and to give emotional support to their loved one who is facing cancer, all while trying to pick up the slack where the person with cancer can no longer provide. They may need support, but the person they would normally turn to may be overwhelmed with dealing with cancer and may not be able to give it. The well partner may be forced to put aside his or her own shock and trauma to support, help, and protect the person with cancer. All of this can change the dynamic of the relationship.
Gender differences must also be taken into consideration. While this may not apply to all men and women, in general, men are more concerned with the facts of the situation and want to take action. When a man is unable to protect the person he loves from cancer, he may feel helpless, frightened, and sad. The man may feel his job is to fix things for his partner, while his partner may simply long to be heard and supported.
When cancer enters the picture, many couples try to protect one another from unpleasant thoughts and feelings. Unfortunately, this often has the unintended consequence of pushing couples apart.
On the other hand, women are generally more focused on emotions and connection with others. When a woman’s partner is silent, or tries to fix what cannot be fixed, she may feel even more alone and misunderstood.
As is true with most challenges, communication is one of the most important tools couples can use when facing cancer together. Good communication involves both talking and listening. Understanding your partner’s thoughts and feelings and making room for each other’s concerns is the heart of good communication.
When cancer enters the picture, many couples try to protect one another from unpleasant thoughts and feelings. Unfortunately, this often has the unintended consequence of pushing couples apart. In order to stay connected during this challenging time, couples need to find ways to talk about even the most difficult subjects.
Dr. Dan Shapiro, a professor at Penn State University and author of the book And in Health: A Guide for Couples Facing Cancer Together, writes about how cancer can cause people to lose their bearings and to push away those they love and most need to help them through the challenges of treatment. He offers the following advice for couples facing cancer:
♦ Teamwork is essential. When couples see doctors as a team, it helps to have both people listening, taking notes, and asking questions.
♦ Talk and touch. Love and support can be communicated through touch.
♦ Allow for mistakes. Cancer requires a whole new set of skills at a time when people are depleted, distracted, and scared. Patience and tolerance are essential.
♦ Nobody can read minds. It is important for spouses to check for understanding.
♦ Prepare for the unknown. Talk with one another about the hard things, like end of life and advance directives.
Don’t hesitate to seek support if you need it. A counselor or other professional can help you improve communication and find ways to cope well with cancer together. Drawing on the support of family, friends, or other couples facing cancer may also be helpful.
When facing cancer together as a couple, it’s important to make room for one another’s reactions and styles of coping while also having open and honest dialogue with one another. And it doesn’t hurt to keep a sense of humor. Cancer isn’t funny, but life is, and laughter can help us regain some perspective through even the greatest difficulties.
♦ ♦ ♦ ♦ ♦
Susan Hedlund has been a healthcare social worker for 30 years and has extensive experience working with individuals and families facing life-threatening illness and loss. She is the manager of Patient and Family Support Services at the Knight Cancer Institute at Oregon Health & Science University in Portland, OR, and an assistant professor at the OHSU School of Medicine, as well as the Portland State University School of Social Work.
Where Can I Go for Cancer Rehabilitation?
by Michael D. Stubblefield, MD
There are more than 15.5 million cancer survivors in the United States. This number will increase to an estimated 20 million by the year 2026. Greater than half of these survivors will experience complications of cancer and its treatment, which can profoundly affect their function and quality of life. Moreover, finding rehabilitation services to help improve function and quality of life after cancer can be a challenge for many survivors.
The issues resulting from cancer and its treatment are many. They may include weakness, pain, sensory abnormalities, diminished cognitive function, and a host of other disorders. For instance, more than half of women with breast cancer will experience shoulder problems, including pain and restricted range of motion, following treatment. Others will develop lymphedema, nerve injury, memory problems, or joint aches.
Each type of cancer and its treatment are associated with a unique set of functional issues. Recognizing that post-treatment issues are not necessarily “normal” and often can be effectively treated or managed is a key first step on the journey to recovery.
The next step is most likely cancer rehabilitation. Cancer rehabilitation can help survivors obtain and maintain the best possible physical, social, psychological, and vocational functioning within the limits created by cancer and its treatments. Many clinicians specialize in cancer rehabilitation, including physicians, physical therapists, occupational therapists, speech-language pathologists, and neuropsychologists. Often, a team of clinicians is needed to achieve the best outcome since multiple problems requiring multiple skillsets can exist simultaneously.
♦ Cancer rehabilitation physicians (also known as physiatrists) are experts at identifying, evaluating, and treating the nerve, muscle, pain, and functional issues caused by cancer and its treatment. Cancer rehabilitation physicians can order and interpret imaging, such as MRIs, and laboratory studies to help confirm the exact cause of a given problem. They can prescribe medications, order therapy, perform injections, and offer other treatments to aid recovery. To provide safe and effective care, cancer rehabilitation physicians must understand not only cancer and its treatment but also how additional non-cancer-related medical problems, like arthritis, heart disease, or diabetes, can affect rehabilitation efforts.
♦ Physical therapists can help cancer survivors reduce pain and restore mobility by developing and monitoring therapeutic exercise programs designed to improve strength, endurance, flexibility, coordination, and overall mobility. PTs with specialized training can also help remove tissue restrictions to movement (myofascial release) and reduce lymphedema using specialized massage, wrapping, and other techniques.
♦ Occupational therapists can help cancer survivors maximize participation in activities of daily living using therapeutic activities and adaptive strategies. Some are trained in the treatment of lymphedema and others in the management of cognitive dysfunction.
♦ Speech-language pathologists are specialists that evaluate and treat speech and swallowing disorders that can occur in many cancer survivors. They can perform specialized swallowing studies and teach exercises to help improve speech and swallowing.
♦ Neuropsychologists use specialized testing to identify cognitive deficits, like chemo brain, that can occur in cancer survivors. They also help design and monitor treatment strategies to improve cognitive function.
Finding the right cancer rehabilitation services can be difficult for many survivors. You should start by discussing your functional issues with your cancer care team. Your oncology clinicians may already have a network of rehabilitation specialists they can recommend who are suited to your individual needs. Most large medical centers will have outpatient therapy services to treat common disorders, such as peripheral neuropathy and shoulder dysfunction. Some will also have lymphedema services. Such services may not be cancer specific, but, often, they are all that is needed for survivors with minimal and uncomplicated cancer- and treatment-related difficulties.
People with more severe and complex issues are best served by visiting a cancer rehabilitation physician. Such physicians are more likely to have the skill and experience needed to perform a comprehensive evaluation and devise a safe and effective treatment strategy. Unfortunately, there are not nearly as many cancer rehabilitation physicians as other cancer rehabilitation clinicians, such as physical therapists, for instance. An internet search may help you find a cancer rehabilitation physician near you.
While traveling to see such a physician is a burden, it may be well worth the time, effort, and expense if the visit results in a safe, comprehensive, and effective treatment plan. Cancer rehabilitation physicians can often coordinate care at a distance and help find other clinicians with key skills to aid in functional recovery.
♦ ♦ ♦ ♦ ♦
Dr. Michael Stubblefield is the medical director of the Cancer Rehabilitation Program at Kessler Institute for Rehabilitation in northern New Jersey and the national medical director of Cancer Rehabilitation at Select Medical. A leader in the field of cancer rehabilitation, he uses his diagnostic and therapeutic medical skills to restore function and quality of life to cancer survivors.
What Do I Tell the Kids?
How to Talk to Your Children about Cancer
by Bonnie Indeck, LCSW
If you’re facing the challenge of parenting with cancer, you’re not alone – many cancer survivors have children under the age of 18. A cancer diagnosis can be difficult, but talking with your children about it may seem equally challenging or even more difficult.
Should I tell?
Your children should hear the news of your cancer diagnosis from you, not overhear it from a neighbor or friend. Being honest and open lets your children know that you trust them and gives them permission to talk with you and ask you questions. Let them know that it’s OK to tell you what they are feeling or thinking.
You don’t have to answer all of their questions right away. Tell them that you need to think about it and will get back to them. And then do just that.
How do I tell?
Arrange for a day when you have plenty of time. Don’t rush the conversation, and make sure you can spend some time with your children after giving them the news. Keep in mind it may be easier for your children to talk when riding in a car or playing a game.
Children take their cues from their parents. If you act in a confident manner, they will too. If you are worried, anxious, or overly tearful, they may mimic what they see. Tell your children ageappropriate truths, and respond to their questions in an honest manner. If possible, let them know that you believe you will be OK and that you will get through this as a family. Remind them that they may talk to you, another family member, or a trusted friend at any time.
Being honest and open lets your children know that you trust them and gives them permission to talk with you.
It’s important to keep your children’s routine as normal as possible and to reassure them that they will be taken care of during your treatment. Be specific: “You will continue to go to Cub Scout meetings” or “Grandma will be picking you up from the bus in the afternoon.” This will help your children feel secure.
Who else should I tell?
You might want to consider informing your children’s school about what’s happening at home. Make sure that the principal, your children’s teachers, and the school social worker, psychologist, or guidance counselor are aware. This will allow them to keep their eye on your children and give them extra support or reach out to them if needed. Keep them updated as your treatment needs and schedule change.
Enlist the help of friends and family. While it’s not always easy to accept help, it will make them feel good and help you out at the same time. If they offer, allow your friends and family members to bring dinner, go shopping, or help clean so you can spend more of your energy with your children.
What else may help?
Sometimes having your children visit you in your treatment surroundings can be helpful to them, as they can worry about the unknown, which is often worse than the reality of the situation. Talk with your healthcare team to find out the best time for children to visit, whether in the hospital or in the outpatient setting. Prepare your children by letting them know what to expect. Describe the room and explain what they may see. The duration of the visit should be based on the children’s ages. It is helpful to have another adult there who can take them home or talk with them after the visit if they have any worries.
How do I know if my children are
If you have any questions or concerns, talk with your doctor or nurse. You can also request to see the hospital social worker, who is trained to assess how well your children are doing and determine if they need some extra guidance. Take some time to do what you get pleasure from, even if for only a few minutes a day. Your children can sense your emotional state and will feel better knowing you are feeling good. Be with your children when you are able, play with them, read to them, and enjoy spending time with them!
♦ ♦ ♦ ♦ ♦
Bonnie Indeck has been working with cancer survivors and their families for more than 35 years. She is the manager of Oncology Social Work at Smilow Cancer Hospital at Yale-New Haven in New Haven, CT.
For additional resources for parenting with cancer, visit the website for the Parenting At a Challenging Time program at Smilow Cancer Hospital at Yale-New Haven, ynhh.org/smilow/services/support-services/pact.
Finding My Cancer Lifeline
by Roberta Aberle
Cancer has always been a constant in my family. Even from an early age, I’ve always known I was at risk. Several uncles and aunts, as well as three of my grandparents, lost their lives to cancer. When a few cousins were diagnosed, my fears increased. I began doing everything I could to mitigate my risks – eating the right foods, exercising regularly, avoiding toxins, and just taking care of myself.
But then the big one hit. At age 47, my older sister was diagnosed with stage III ovarian cancer. Grieving so many losses in our extended family had been hard enough, but this time, it hit me in the gut. Not only was I grappling with watching someone close to me fight cancer, but my own internal risk gauge switched into high gear.
Building a Community
From the very beginning, I realized my family was playing the “telephone game” far too often. My sister would call my mom or me with a health update, then we’d call other relatives and friends, and they’d pass the information along. But by the time the last person in line got the update, facts would get polluted and often totally distorted.
Recognizing that accurate communication was crucial, I began writing down my sister’s health updates, trying my best to translate the complicated medical language while also accurately conveying the intricate details. At first, I emailed people. Then, when my sister entered hospice, I began posting updates to her Facebook profile. Still, I often found myself frustrated by the limitations, especially by how to share news and updates with all the people who needed to be informed.
But I also held a deep conviction that by keeping my fight with cancer private, I was shutting the door on the very people who would help me conquer it.
Nonetheless, posting these updates helped keep us sane. We were no longer overwhelmed by the overload of calls and messages. When my sister passed and I began posting about her memorial service, the site took on a life of its own. More people than ever added comments. It made me wish I’d been able to reach all these people who could have encouraged my sister while she was still alive.
I still visit her site seven years later. Of course, it isn’t the only way I remember her, but I still find comfort in re-reading entries. Sometimes, I post a new update just about missing her.
Not long after my sister passed, a colleague who was fighting stage IV colon cancer invited me to join an online support site through MyLifeLine.org. It was her way of keeping family and friends updated throughout her cancer journey. Little did I know at the time that I was about to embark on a similar journey.
Within 10 days, when my worst fears happened and I had to grapple with my own cancer diagnosis, I knew it was essential for me to create my own MyLifeLine site. I had a mix of emotions and concerns about maintaining privacy. I worried about losing my job like my sister had. But I also held a deep conviction that by keeping my fight with cancer private, I was shutting the door on the very people who would help me conquer it.
The benefits of a strong support structure for people with cancer are both proven and measurable. But I have my own anecdotal evidence to add. When I have a bad day, an encouraging comment on the MyLifeline site can motivate me.
I would like to say I’m cancer-free or in remission, but I’m not. I’m in a holding pattern. A shift in my health insurance coverage means I am now unable to afford a treatment I need. The financial strain that accompanies a cancer diagnosis can never be underestimated. Nevertheless, I’m trying to go back to work. Fatigue is still a problem, but otherwise I feel nearly normal.
Though I still struggle sometimes, MyLifeLine has become a true lifeline for me. Without being able to share my health updates and my raw emotions, without the encouragement and support of others, and without my skilled oncologist and nurses, I’d be in a much different place than I am right now. I strive to be an exception to the statistics. Until then, I continue to press forward.
♦ ♦ ♦ ♦ ♦
Roberta Aberle is a primary peritoneal carcinoma survivor living in Denver, CO. You can follow her cancer journey at MyLifeLine.org/RobertaAberle.
MyLifeLine.org is a nonprofit organization that encourages cancer survivors and caregivers to build an online support community of family and friends through free personalized websites. Learn more at MyLifeLine.org.
When Cancer Calls into Question Everything You Thought You Knew
by Michael Eselun, BCC
Most of us walk through our lives feeling so certain of what we hold to be true; then along comes a crisis – like cancer – and suddenly all bets are off. But I’m a good person, so God will heal me… God doesn’t give us any more than we can handle… Everything happens for a reason… A positive attitude is everything… Cultivating gratitude is the only way to experience peace… If you haven’t said such platitudes to yourself, you’ve undoubtedly heard them countless times from others. While these statements of faith may have seemed true at another time and place, right now, in these circumstances, they just fall flat.
Our certainty might even extend to what we have always believed about the people whom we thought would be there for us no matter what. I have found that so many folks living with cancer are surprised by who shows up and who doesn’t.
As humans, we crave certainty. Security. We want to know, Why did this happen? Will I be OK? What if there are no answers and no certainty to be found? What if we can’t know? Does that mean peace of mind and heart are no longer possible?
Not necessarily. By letting go of what we thought we knew, we just might be able to open ourselves to finding love, support, meaning – and even magic – in the least likely of places. A deeper peace may be found in living the questions, rather than clinging to our old certainty. We can move forward with the curiosity of the explorer, charting new waters, making new discoveries about who we are and what we’re connected to, releasing our need for immediate answers.
A deeper peace may be found in living the questions,
rather than clinging to your old certainty.
We just came through the holiday season, in which there is such overwhelming cultural demand to feel a certain way – grateful, blessed, joyful. And when we can’t summon those feelings, we often intensify our suffering by judging ourselves harshly for it. But our feelings can’t always be ordered up on demand, and they don’t always coincide with the calendar. The beliefs that have seen you through life thus far, those about having a positive attitude and God not giving us more than we can handle, may not be big enough to include this new reality. You stand a better chance of accessing those feelings of gratitude or joy when you first acknowledge and accept how you are feeling right now. You don’t need to defend or explain your feelings to anyone, not even yourself.
Sometimes cancer can call into question how we see ourselves, who we are in the world. If I’ve always seen myself as a marathon runner, or the get-it-done mom who can handle a dozen tasks at once, and yet because of my cancer, I can’t do those things anymore … well then, who am I? This is just one more question to live.
Discovering who you are when you’re not all those things you did, or all those things you thought you were, can be a profound spiritual journey. Though, it may be scary at first. You may be afraid of discovering you are less than you thought. But what if you are more? And what if you are connected to more, with a far deeper capacity for love, kindness, and compassion – for others and for yourself? You may just discover a whole new understanding of what it means to love and be loved.
When a patient of mine, Angela, a 30-something mother of two, was diagnosed with breast cancer, she said this to me: “Michael, I have cancer. That’s the truth. But you know what? It’s only one truth of many truths.” Can her wisdom be enough for all those who walk this journey?
Can we each keep our eyes and hearts open to recognize other truths when the old ones just aren’t enough anymore? What if there is a deeper peace to be found in living the questions – to accepting ourselves, our lives, and our response to life as it is, moment- to-moment, unfixed, ever-evolving? Can we move forward with more fascination than fear, with more curiosity than certainty? Perhaps, then, we can all walk each other home “some distant day into the answer.”
♦ ♦ ♦ ♦ ♦
Michael Eselun serves as chaplain for the Simms/Mann-UCLA Center for Integrative Oncology in Los Angeles, CA. He is a highly-regarded keynote speaker who speaks extensively to healthcare professionals, patient populations, and faith communities across the country. Widely published in journals, Michael also has presented a TEDx talk, “It’s Magic,” (available on YouTube) about finding the magic in life. Learn more at MichaelEselun.com.
Taboo of The Black Eyed Peas
Speaks Out about His Fight with Testicular Cancer
by Kaylene Chadwell
Born Jimmy Luis Gomez, Taboo is best known as the longhaired rapper/dancer from the multiplatinum pop group The Black Eyed Peas. With more than 75 million records sold – not to mention six Grammy Awards – The Black Eyed Peas are one of the world’s best-selling pop groups. Along with will.i.am, Fergie, and apl.de.ap, Taboo has contributed to pop hits like “Boom Boom Pow,” “Where Is the Love?” and “I Gotta Feeling.”
In 2006, Taboo broke his tailbone after falling onstage during a performance. After that incident, he began having what he calls “crazy back pains.” But, chalking it up to his tailbone not healing properly, he didn’t really think anything of it. “The pain started getting stronger and stronger every year,” Taboo admits in a recent interview with Coping, “but I never went to a doctor to see what it was.”
Then one night in June 2014, upon returning home from a gig, the pain became so severe that Taboo couldn’t take it any longer. His wife insisted he go to the hospital. After an MRI, CAT scans, and blood work, Taboo was told the next morning that he had stage II testicular cancer. He says it had spread from his right testicle to two lymph nodes in his spine. The years of pain that he had attributed to his broken tailbone was actually caused by his growing tumor.
“I’m a warrior.
I’m a champion.
I’m a Fighter.
I’m not givin’ in.”
– Taboo, “The Fight”
Taboo with his family (clockwise from top left): wife Jaymie; daughter Jett; and sons Joshua, Jimmy, and Journey.
All photos courtesy of Taboo
Just one day later, Taboo had surgery to remove the cancerous testicle, and then he began chemotherapy a few days after that. “Everything was back to back,” Taboo explains. “There was no time to react. We just had to go with it.”
For the next twelve weeks, Taboo underwent chemotherapy five days a week. When asked about the hardest challenge he faced during his cancer experience, Taboo says it was the chemotherapy. It left him in excruciating pain and unable to sleep. He admits, “There were moments when I wanted to give up.”
But what hurt even more than the pain was not being able to be with his kids like he wanted to. He says, “When I was doing chemotherapy, there were times when I’d be tired and I wasn’t able to do things like run in the backyard with my kids or play with them. And I’m a very affectionate father. I love to be with my kids.”
Taboo, who has three sons (Joshua, Jimmy, and Journey), was also told he may not be able to father another child after chemotherapy. Although he and his wife, Jaymie, visited a fertility doctor and banked his sperm before he started treatment, they later decided, “If it happens, it was meant to be; if not, we’re blessed to have [the boys].” Well, it must have been meant to be because, in 2015, the couple learned that they were going to have another child, a girl they named Jett Juliana. Taboo calls her his “miracle baby.”
Now cancer-free, Taboo has checkups every three months and is diligently looking after his health. He has also become an ambassador for the American Cancer Society, using his voice to raise awareness and to inspire other cancer survivors. In November, he released a new single, “The Fight,” as an inspirational anthem for cancer survivors, and is donating the proceeds to the ACS to support cancer research and free patient service programs.
Taboo explains, “I want to be the person that says, ‘We’re not going to curl up into a ball. We’re going to get up and fight. We’re going to survive this. We’re not going to let this cancer beat us.’ That’s ultimately what I want with this song, that sense of encouragement, that sense of hope and motivation that you can get through anything.”
The official video for his song “The Fight” is set to be released this year, along with a new Black Eyed Peas album. Plus, Taboo plans to keep working as an ACS Ambassador. As of now, 2017 looks to be a busy year for the Grammy-winning rapper. But don’t worry, he says, “I’m busy. It doesn’t stop. But I’m understanding my health comes before everything. I won’t go full speed ahead and neglect my health.”
More From Our Conversation with Taboo
Coping: Has your outlook on life changed since your
Taboo: I was never as conscientious about putting my health before my career. I was gung-ho career driven. I still have that inside of me, but I’m making sure that my health comes before anything because it’s important for me to be there for my family. I have a long life to live, so I’m not going to jeopardize my health for anything.
Coping: What advice would you give our readers who are facing cancer?
Taboo: You’re not alone – that’s one of the most important things. A lot of times I felt alone during chemotherapy, even if there was someone in the room. But it is a community of people that go through it. You’re not alone.
♦ ♦ ♦ ♦ ♦
Surviving Cancer With Music by Your Side
by Suzanne B. Hanser, EdD, MT-BC
Whether you have cancer, had cancer, or are caring for someone with cancer, that word – cancer – likely enters your mind a lot. Once cancer becomes part of your vocabulary, it may be hard to think about anything else. Taking up so much space in your thoughts, it can all too quickly and easily start to take over your identity.
As a music therapist, I’ve seen this firsthand while accompanying dozens of people on their journeys through cancer. At my side has always been music, an expansive, expressive outlet that reminds us of the beauty in life. Music has a way of saying things that are difficult to express with words; it can communicate strong emotions, with or without lyrics, and can move you deeply.
So, what if, when you find yourself thinking about your cancer, worrying, or just feeling stuck, you replace the thought of can-cer with can-sing instead. Now, I’m not suggesting that you can just whistle a happy tune and expect to feel better. But I can recommend some ways to tune into your creative capacity to heal, through music.
Lose your ear buds.
Instead of listening to music alone, invite someone in your life to listen to your favorite music with you. The music you love will trigger memories and associations that tell part of your story and reveal the real you. Tell your companion why you like this music and what makes it special. When they do the same, and the music strikes the same chord for both of you, this can strengthen your bond and your resolve. The emotional impact of the music or the meaning of the lyrics will give you plenty to talk about, and you may be surprised to see how much the music brings up.
Listening to music has been shown to affect your sense of time passing, and it can improve your comfort level. It’s something you can do in the waiting room, during chemotherapy infusions, or any time you need a mood booster. Play a song you love and sing along. Yes, you “can-sing” – whether anyone is listening or not.
Resonate with a song.
Find some music that expresses just what you feel, or would like to feel. Sometimes a sad song says what you wish you could say, and matches your mood like nothing else can. At other times, you may want to remember the songs that composed the soundtrack to the best times of your life. Listening to them can take you back to those great moments. Of course, on some days, you might prefer instrumental music to whisk you away without the need for words to guide you. Seek out songs that you would like to add to the playlist of your life, and listen to them when you are feeling down, lonely, or in pain.
Songs for Survival
Take a listen to these songs with themes that cancer survivors might relate to:
♦ A Change is Gonna Come, by Sam Cooke
♦ Brave, by Sara Bareilles
♦ Bridge Over Troubled Water, by Simon & Garfunkel
♦ Climb Ev’ry Mountain, by Rodgers and Hammerstein
♦ Fix You, by Coldplay
♦ Here Comes the Sun, by The Beatles
♦ Let It Be, by The Beatles
♦ It’s My Life, by Bon Jovi
♦ Somewhere Over the Rainbow, by Judy Garland
♦ What a Wonderful World, by Louis Armstrong
Give your music away.
How can you show that you are grateful to the people in your life – physicians, nurses, therapists, neighbors, friends, family, community – for what they’ve done for you during your illness? How about sending them a playlist of your favorite songs?
So many songs capture the sentiment of gratefulness perfectly: Bette Midler’s “Wind Beneath My Wings”; “You’ve Got a Friend” by James Taylor; and, of course, Bill Withers’ “Lean on Me.” Is there someone in your life who needs to hear this message? Send these songs as a gift. You could even sing them (Yes, you can!) and record them for those people who are caring for you during this difficult time.
Thanks to portable listening devices and electronic musical games and apps, you can take your music with you virtually wherever you go – medical appointments, treatments, diagnostic scans. Remember to ask your healthcare provider if you can have music by your side at your next appointment, and find ways to bring out the musical you. Enjoy listening to your special music, sing your heart out, and give the greatest gift – your specially selected song list.
♦ ♦ ♦ ♦ ♦
Dr. Suzanne Hanser is a professor and chair emerita of Music Therapy at Berklee College of Music in Boston, MA, and author of Integrative Health through Music Therapy: Accompanying the Journey from Illness to Wellness. She is also past president of both the World Federation of Music Therapy and the National Association for Music Therapy.
A New Approach to Managing
by Tanya J. Uritsky, PharmD
Pain medications have gotten a lot of press over the past couple of years. It seems a new story about the dangers of pain medications is reported almost daily – from concerns about misuse, to overdose, to drug-drug interactions and overall safety. In light of recent news coverage, let’s review the basic principles of managing cancer-related pain as we sort through some of the new information that is out there.
What the Experts Recommend
For a very long time, the backbone of cancer pain management has been opioid medications – drugs like morphine, oxycodone, and hydromorphone. However, with the changing atmosphere around opioid use and the now known and evolving risks of these medications, experts have begun recommending a different approach.
While you may not be able to eliminate the pain entirely, you must find the right balance between pain relief and adverse effects.
In managing cancer-related pain, the first step is to try using nondrug methods like physical therapy, acupuncture, or massage. If pain is not able to be controlled with nondrug measures, but is not severely disabling, drug alternatives to opioids are the next step. These can include acetaminophen and non-steroidal anti-inflammatory medications (like ibuprofen or naproxen). However, some people may not respond well enough to these methods and may still require opioid medications to manage cancer-related pain. For these people, opioids can be a good pain management option when they are appropriately prescribed and monitored.
Sorting through the Information
With so much information at our fingertips, it’s tempting to use an online search engine to get more information on any new therapies that are recommended. It would be best to avoid this urge, as much of the information you find online may be outdated or poorly researched. You should only seek out information from trusted sources – as they are likely to be the most accurate and timely.
What’s the difference between dependence, tolerance, and addiction when it comes to pain medications?
Dependence: With consistent administration of a medication, the body adapts to its presence, and cessation of the drug’s use results in withdrawal symptoms.
Tolerance: With repeated dosing, the body adapts to the continued presence of the drug, and increasing doses may be needed to provide a sustained effect.
Addiction: A relapsing disease of the brain, characterized by compulsive drug seeking and use, despite harmful consequences.
Ask your provider for information about recommended therapies. He or she can also point you to trustworthy resources for you to research on your own. Likewise, your pharmacist can help you understand any new medications you are prescribed and can let you know what side effects or warning signs to be on the lookout for during treatment.
Monitoring Your Pain
Cancer survivors should be screened for the presence of pain at every appointment, and any new or different pain should always be evaluated by your oncologist. As with any healthcare intervention, when treating pain, it is important to set realistic goals and to frequently reassess these goals and the progress you are making toward them.
Your cancer pain management goals may be small at first, for example, to simply be able to get dressed in the morning without experiencing pain, or to walk to the bathroom more comfortably. Over time, they may progress to include things like taking longer walks or going grocery shopping. You have to decide what quality-of-life measures are most important to you, in addition to the level of pain you are able to tolerate in your daily life.
It is also important to address any adverse effects that your pain medications might be causing and decide if these are tolerable for you. If not, a change in regimen may be warranted. While you may not be able to eliminate the pain entirely, you must find the right balance between pain relief and adverse effects.
Though the methods of cancer pain management may be changing, the basic goal remains the same. Cancer-related pain should be routinely screened and assessed by your oncologist, and it should be treated safely and effectively, with the top priority being to improve your quality of life.
Breaking Down Your State of Pain
Arming yourself with information about different types of pain may help you better describe your pain and get the most out of your visit with your doctor. Cancer-related pain can be broken down into several different types, or states:
♦ Acute pain comes and goes quickly and ranges from mild to severe. It is due to muscle or tissue damage caused by things like medical procedures or an injury.
♦ Chronic pain is ongoing. It does not go away, or it comes back frequently. It too can range from mild to severe and may be caused by the cancer itself or a previous injury.
♦ Breakthrough pain is a sudden, intense increase in pain that may occur by itself or as the result of a specific activity.
♦ Neuropathic pain results from damage to the nerves. Often described as a burning or shooting pain, neuropathic pain may be a side effect of chemotherapy or radiation, or it may be due to the cancer itself.
♦ ♦ ♦ ♦ ♦
Dr. Tanya Uritsky is a clinical pharmacy specialist in pain management and palliative care at the Hospital of the University of Pennsylvania in Philadelphia, PA.
If your pain is not being managed to your satisfaction, it may need a second look. Ask your doctor for a referral to pain or palliative care specialty services if these are available in your area.
Diagnosis: Lung Cancer
4 Keys to Managing the Disease and Maximizing Your Quality of Life
A diagnosis of lung cancer can leave you and your loved ones feeling uncertain, anxious, and overwhelmed. You have important treatment decisions to make, emotional concerns to manage, and insurance and financial paperwork to organize, among other practical concerns. Here are four keys to help you manage the disease and maximize your quality of life.
1 Understand your diagnosis and treatment plan.
Lung cancer occurs when the cells in the lungs begin to change and grow uncontrollably, forming a tumor (also called a lesion or a nodule), which can be either cancerous or benign. The main types of lung cancer are small cell lung cancer and non-small cell lung cancer. Subtypes of non-small cell lung cancer are categorized based on the type of cell that the cancer originated in, and include adenocarcinoma, squamous cell carcinoma, and large cell carcinoma. The type of lung cancer that you have is an important factor in determining which treatments may work best for you.
There are a wide range of treatments for lung cancer. Chemotherapy and radiation are the main treatment options for people with small cell lung cancer. Surgery is rarely used for people with small cell lung cancer and is only considered for people with very early-stage disease. Treatment options for non-small cell lung cancer include surgery, chemotherapy, radiation, targeted therapies, and immunotherapy. If treatment is necessary, ask your healthcare team to recommend reliable publications and websites to help you learn more about your treatment options. Knowing what to expect can help you feel more in control.
2 Communicate with your healthcare team.
Because lung cancer is a complex condition with complex treatment options, good communication between you and your healthcare team is key. Your oncologist, nurses, and other members of your healthcare team work together to treat your lung cancer. Since medical appointments are the main time you will interact with your team, being as prepared as possible for these visits is important. It will help ensure that you understand your diagnosis and treatment, get answers to your questions, and feel more satisfied with your overall care.
3 Find resources.
While lung cancer can present many challenges, keep in mind that you do not need to cope with this diagnosis on your own. Your friends and family are important sources of strength and support. There are also many local and national support services available to assist you.
♦ Financial assistance There are many organizations that provide help with medical billing, insurance coverage, and reimbursement issues. There is also financial assistance available to help people who cannot afford the cost of their medications. Good places to start your research are the websites of A Helping Hand (CancerCare.org/helpinghand) and the Partnership for Prescription Assistance (pparx.org).
♦ Benefits and entitlements Local and county government agencies can give you information on Social Security, state disability, Medicaid, income maintenance, the Low Income Heating Energy Assistance Program (LIHEAP), and the Supplemental Nutrition Assistance Program (SNAP). Check your local phone directory for listings.
♦ Housing and lodging The Hope Lodge of the American Cancer Society, the National Association of Hospital Hospitality Houses (NAHHH.org), and other organizations provide temporary lodging for families of a person who needs to travel far from their home for treatment. Joe’s House (JoesHouse.org) is a nonprofit organization that offers an online database with lodging information near cancer treatment centers across the U.S.
4 Get emotional support.
Adjusting to and finding ways to cope with a lung cancer diagnosis is an important part of healing, along with treatment. There are many organizations, such as CancerCare (CancerCare.org), that provide support services to help people affected by cancer. Individual counseling is available to help you learn ways to cope with the emotions and challenges raised by your diagnosis. Support groups can connect you with other people in a similar situation in a safe, supportive environment. Cancer affects the whole person, and their loved ones, so it’s important to create a support network as part of managing your care.
A diagnosis of lung cancer is challenging, to say the least. However, if you make a point to learn about your diagnosis and its treatment options, communicate with your healthcare team, take advantage of the resources available to you, and surround yourself with a support network, you will be better able to manage your lung cancer and experience a better quality of life.
♦ ♦ ♦ ♦ ♦
CancerCare offers free face-to-face, telephone, and online support groups led by professional oncology social workers. To learn more, call (800) 813-4673 or visit CancerCare.org.
Reprinted with permission from cancercare.org.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, November/December 2016.
by Diane Tefft Young, MA, LICDC-CS
In late January 2015, I was diagnosed with uterine cancer – stage IIIC. My oncologist recommended a “sandwich” treatment plan. I would receive three 6-hour chemo infusions three weeks apart, followed by 28 daily radiation sessions. Treatment would end with two additional 6-hour chemo infusions four weeks apart.
As I was trying to take this all in, I posed a question: when will I lose my hair? The response was that my chin-length, fine gray hair would be completely gone following the second chemo infusion. Not wanting to be stuck wearing a tired-looking, yet well-fitting, Ohio State University baseball cap all summer long (and into the fall and winter), I scheduled an appointment at the women’s cancer accessories and wig shop.
Because I like to be well prepared, I brought along a picture torn from a year-old fashion magazine. It featured an attractive woman with short-cropped, light-blond hair. When I had ripped the photo from the magazine just days before, little did I imagine then how valuable the crumpled picture would become.
The picture was offered to the wig stylist, who confidently commented, “Oh, I can do that!” Photo in hand, the stylist was able to see the color and style I had in mind. I was told my short, blond wig would be available a few days after my first chemo infusion. Perfect timing.
The new wig was love and convenience wrapped together. It looked natural and real, and it complemented my olive skin tone perfectly. Friends who didn’t yet know about my cancer diagnosis commented that they liked my new haircut and seemed unaware I was wearing a wig until I told them. During the next ten months, I wore my blond wig often. It seemed to have magical powers.
I did everything known to woman to encourage my hair to grow.
There were days I’d look in the mirror and see a pale, gaunt, early-seventies woman who looked as if she were living in a prison – a prisoner of my cancer diagnosis. Then I would put on the blond wig and at once feel I’d come back to life. This $500 wig (thanks be to God for good health insurance) had the surprising gift of enabling me to feel pretty, even attractive, at times during this difficult year. When I wore the wig, I would sometimes forget the thing that compelled my wearing of it.
Because I loved being blond, my post-treatment plan was to have my hair stylist color my hair an almost white-blond. Much to my surprise, as my white-gray, post-chemo hair began to grow in, it was curly. I had curls all over my head!
I did everything known to woman to encourage my hair to grow. I used shampoo designed to thicken thin hair. I took the daily maximum dose of a well-known herb that stimulates healthy nails, skin, and hair growth. My wig stylist offered up three herbs that had helped another cancer survivor in her eighties grow lovely thick hair. I promptly drove to a local herbalist shop to purchase them. As women often do in times of crisis, the shop herbalists banded together to find me the perfect blend of these herbs and carrying oils. Now, each night before retiring to bed, I put three drops of the custom-blended oil into the palm of my hand and rub it into my scalp.
What’s next? I must confess that, as I am still not used to my curly locks, I have several hats from which to choose: a newly purchased wide-brimmed cloth one, a Panama hat inherited from my well-dressed mother, and, of course, the tired looking OSU baseball cap that still hangs from the doorknob of my bedroom closet.
Recently, when several women from my high school class gathered to have lunch and to view a Picasso exhibit at our local art museum, I was able – on the spur of the moment – to attend. One friend, who now lives in Chicago, commented, “I don’t remember you having such curly hair!”
My response? “It’s an unexpected gift from last year’s chemotherapy treatment.” How fortunate I am to be alive, cancer-free, and sporting my newly curly hair.
♦ ♦ ♦ ♦ ♦
Diane Young is a uterine cancer survivor living in Upper Arlington, OH.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, November/December 2016.
Your Questions Answered
Polycythemia vera, or PV, is one of a group of progressive blood cancers called myeloproliferative neoplasms, or MPNs. This group also includes essential thrombocythemia and myelofibrosis. MPNs can affect anyone at any time, and there is no known cure.
Q: What is polycythemia vera?
A: Polycythemia vera is a chronic, progressive myeloproliferative neoplasm that is primarily characterized by an elevation of the red blood cells. The disease is most common in men over the age of 60, but anyone can develop PV. People who have PV typically experience an elevated white blood cell count, an elevated platelet count, and an enlarged spleen, especially over time.
Q: What causes PV?
A: The trigger for polycythemia vera and other myeloproliferative neoplasms isn’t known. However, researchers have discovered that PV and other MPNs may be caused by non-inherited genetic mutations affecting proteins that work in signaling pathways in cells. Nearly all people with PV have a mutation called JAK2V617F (found in the JAK2 gene) in their blood-forming cells. This mutation is one of the ways that JAK (Janus kinase) pathway signaling can become dysregulated and cause the body to produce too many blood cells.
Q: What are the symptoms of PV?
A: Like people with other types of MPNs, people who have PV may present with a wide range of symptoms, or may exhibit no symptoms at all. Common symptoms of PV include
- Ringing in the ears
- Blurred vision or blind spots
- Dizziness or vertigo
- Reddish or purplish skin
- Unexpected weight loss
- Bleeding or clotting
- Early feeling of fullness
- Itching, especially after showering
- Burning and redness of hands or feet
- Night sweats
- Bone pain
Q: What is the prognosis for PV?
A: Most people who are diagnosed with PV enjoy longevity if they receive regular monitoring and treatment. However, in some cases, prolonged survival can be challenged by the development of other syndromes. Approximately 15 percent of people diagnosed with PV also develop myelofibrosis, a progressive bone marrow disorder that results in bone marrow scarring, severe anemia, and enlargement of the liver and spleen. This change can be heralded by the onset of anemia, or a low red blood cell count (as opposed to high red cell blood counts), and a significant increase in the size of the spleen. In a smaller number of cases, PV may progress to acute leukemia. Additional complications that can occur with PV include arterial thromboses (heart attacks, strokes, intestinal gangrene), venous thromboses, and pulmonary embolism. People at risk of developing these illnesses should have their blood counts routinely monitored and controlled by a physician.
Q: What are the available
treatments for PV?
A: Many of the treatment options for PV are designed to manage the disease by returning hematocrit levels (or the percentage of red blood cells in your blood) to normal values. However, the circumstances are different for every person, and asymptomatic individuals may not require treatment for extended periods of time. Routine monitoring by a physician is recommended for all people who have PV, regardless of symptoms. When treatment is required, common treatment options for PV include the following:
⇒ Phlebotomy This is the removal of blood to reduce the number of blood cells. With fewer blood cells, the blood is thinner and flows more easily, improving symptoms and reducing the risk for blood clotting. This procedure is typically done to meet target blood count goals that are determined by your physician, taking into consideration your sex and other factors.
⇒ Low-dose aspirin Most, if not all, people with PV are prescribed a low-dose aspirin treatment. Since aspirin prevents platelets from sticking together, it reduces the occurrence of blood clots that can cause life-threatening heart attacks or strokes. Combined with low-dose aspirin, the regular maintenance of a hematocrit level below .45 for men and .42 for women is currently accepted as a non-leukemogenic approach (or one that does not increase a person’s risk of leukemia) and a first-choice treatment for people with recently diagnosed, low-risk PV.
⇒ Other medications If phlebotomy and low-dose aspirin are not effective or appropriate, or if a person is considered higher risk for blood clotting, physicians may prescribe medications to lower red blood count and relieve symptoms. These may include:
♦ Hydroxyurea This medicine is often prescribed for people with PV who are at high risk for blood clots, based on age and prior history of blood clotting.
♦ Jakafi (ruxolitinib) Jakafi is the first FDA-approved treatment for people with PV who have an inadequate response to or cannot tolerate hydroxyurea. Jakafi inhibits the JAK1 and JAK2 enzymes that are involved in regulating blood and immunological functioning. It also helps decrease the occurrence of an enlarged spleen and the need for phlebotomy. You do not need to be JAK2-positive to take Jakafi, though the great majority of people with PV harbor this mutation.
♦ Pegasys (pegylated interferon) Younger people and women of childbearing age who require treatment are often treated with pegylated interferon because it has not been shown to cause birth defects. Since Pegasys was developed for hepatitis C and not MPN, it is considered an “off-label” medication. Several clinical trials evaluating the effectiveness of Pegasys in people with MPNs are currently underway.
♦ ♦ ♦ ♦ ♦
If you’ve been diagnosed with PV, it’s important to know that you’re not alone. The MPN Research Foundation provides comprehensive support for people with MPNs and their families. To learn more, visit MPNResearchFoundation.org.
Reprinted with permission from the MPN Research Foundation, MPNResearchFoundation.org.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, November/December 2016.
When Sleep Eludes You
Getting a Good Night’s Rest While Coping with Cancer
by Carol A. Enderlin, PhD, RN, FNGNA, Martha Kuhlmann, DNP, RN, PMHCNS-BC, FNP, APRN, and Ellyn Matthews, PhD, RN, CBSM, FAAN
Sleep is essential for our bodies to restore our energy and recharge to keep us going. Seldom is sleep more important than when coping with cancer, its treatment, and survivorship. Yet sleep is so connected to how we feel physically and mentally that cancer-related stress can often disturb our sleep quality and patterns. Getting a good night’s sleep may be most elusive when we need it the most.
Understanding how sleep works can give you insight into how to improve your sleep while coping with cancer. One of the ways we balance sleep and wakefulness is through the buildup of sleep pressure that occurs the longer we are awake. Sleep pressure is at its lowest after a full night’s sleep when our sleep needs are met.
If sleep is too short or is disturbed by many awakenings, we don’t get the deep, restorative sleep we need. This may lead you to take daytime naps to make up for poor nighttime sleep. However, if naps are too long or late in the evening, they may interfere with the normal “pressure” to sleep at night. Sleeping too much during the day may cause your days and nights to get mixed up. If you do need a nap, both the American Academy of Sleep Medicine and the National Sleep Foundation recommend taking short naps of about 30 minutes and avoiding naps too close to bedtime, so as not to interfere with nighttime sleep.
One of the most important sleep habits is having
a regular sleep pattern – even after a poor night’s sleep.
Light exposure is also important for good sleep patterns. Sunlight stimulates the daily production of melatonin, a hormone which peaks at bedtime and helps us fall asleep. If you stay indoors all day, you may not get the sunlight your body needs to sleep well at night. Taking a short walk during the day can help you sleep better at night.
Good Sleep Habits
One of the most important sleep habits is having a regular sleep pattern – even after a poor night’s sleep. Keeping a set bedtime and wake time helps your body know when to get ready for sleep and when to wake up. A regular sleep schedule can improve restful nighttime sleep and lessen daytime sleepiness. Moreover, reserving the bedroom for sleep and sex can help you become conditioned to fall asleep when in the bedroom. Activities like watching television or using your computer or cell phone in bed can condition you to stay awake.
Soothing routines, like taking a warm shower before bedtime, can help signal you to wind down for the day. Warm showers promote sleep by helping your muscles relax and decreasing your body temperature. Calming scents, such as lavender, may also promote sleep by reducing anxiety and helping you relax.
Dr. Martha Kuhlmann
In addition, just as exposure to sunlight during the day improves nighttime sleep, keeping your bedroom dark at night is better for sleeping. Light-blocking window coverings in sleeping areas are helpful. Conversely, television, computer, and cell phone screens project very bright light, which interferes with deep sleep, and need to be turned off at night, or located out of view of the bedroom. Environmental noise may also interfere with falling asleep or reaching deep sleep. Using background noise from a sound machine, air purifier, or fan may block out unwanted sound. You can also try sleep masks and earplugs to lessen nighttime light and noise.
Worry or difficulty turning off your mind at bedtime may delay sleep. Using simple relaxation methods like slow, deep breathing, prayer or meditation, and music or guided imagery may help you relax and focus on more positive thoughts. Early in the day, set aside time to deal with demanding tasks, and avoid having emotionally charged conversations at bedtime.
Regular exercise early in the day promotes sleep. However, exercise, as well as nicotine and caffeine, should be avoided at least three hours before bedtime to prevent stimulation of wakefulness. Heavy or spicy meals, excessive fluids, and alcohol should also be avoided too close to bedtime. While alcohol may initially cause drowsiness, it results in early morning restlessness and awakening.
Dr. Ellyn Matthews
Lastly, many pets are like members of the family, but they may not share the same sleep-wake patterns as humans. Cats are nocturnal by nature, sleeping during the day and becoming active at night. And while dogs may adopt their owners’ sleep routines, they also may awaken often at night to bark at environmental noise. Sleeping separately from pets may help improve your sleep.
Sleep disorders may be present before a diagnosis of cancer, or may develop or worsen during treatment. It’s important to talk with your healthcare provider right away if you are experiencing any nighttime snoring or gasping, daytime sleepiness that interferes with daily function, or uncomfortable leg sensations that worsen when sitting or lying down. You should also tell your doctor if you have difficulty falling asleep or staying asleep, or if you often awaken too early, especially if it interferes with daytime function or activities. Your doctor may prescribe medication to help treat any new or short-term sleep-related symptoms. He or she may also refer you to a sleep medicine specialist for further evaluation and long-term treatments, such as cognitive behavioral therapy for insomnia.
Developing good sleep habits is important for cancer survivors. A good night’s sleep can help you stay healthier and cope well with cancer.
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Dr. Carol Enderlin is a clinical assistant professor of Nursing at the University of Arkansas for Medical Sciences College of Nursing in Little Rock, AR. Her areas of interest are sleep in older adults with cancer and evidence-based practice in nursing care. Dr. Martha Kuhlmann is a nurse practitioner in the General Mental Health Service at the Atlanta Department of Veterans Affairs in Atlanta, GA. Her areas of interest are veterans’ insomnia and treatment preferences for anxiety and insomnia. Dr. Ellyn Matthews is an associate professor and Elizabeth Stanley Cooper Endowed Chair of Oncology Nursing at the University of Arkansas for Medical Sciences College of Nursing. Her research focus is sleep in cancer survivors.
Art & Meditation
for the Cancer Journey
by Stephanie McLeod-Estevez, LCPC
Art. Meditation. These two words stir performance anxiety in many of us. In fact, you may be thinking to yourself, This sounds nice, but it’s not for me. However, I’m hoping you will keep an open mind and read on. Because when it comes to using art and meditation to emotionally heal from cancer, neither experience nor talent is necessary to reap the rewards.
You may wonder how this can be true. Well, unlike with fine art, art therapy focuses on the process, not the product. And so, it becomes a form of communication, rather than a display of talent, its purpose to translate your internal experience into something external and tangible. Using art to express your thoughts, feelings, and experiences allows for a more gentle re-entry into that which has created fear, pain, or suffering.
Being diagnosed with cancer is often a traumatic experience, leaving you feeling vulnerable and insecure. To survive the experience, you may compartmentalize the parts that feel too overwhelming to deal with in the moment. Initially, this is a useful strategy for coping with the immediate crisis; however, over time, compartmentalization interferes with emotional, physical, and spiritual recovery. The adrenaline that kept you going dissipates, and left in its wake are the thoughts, feelings, and experiences that you couldn’t fully process because you needed to focus on survival.
So why art? Well, when you are recalling aspects of a traumatic event, your nervous system can become distressed. You can become re-traumatized if you don’t respect your need for pacing. Since the foundation of therapeutic art lies in the principle of staying deeply connected to yourself, you are much more likely to pay attention to your body’s cues that you are feeling overwhelmed. Art also helps you process traumatic memories by breaking them down into manageable amounts of material, allowing you to remain present and grounded, rather than going into fight, flight, or freeze mode.
When you are using art, part of your attention is focused on the materials and what you are doing with them; the rest attends to your internal world. Moving into a project, you begin to slow down your physical sensations, and breathing becomes soft and gentle while the mind quiets and the body becomes peaceful. As you relax, your internal focus leads you to the information that needs to be processed at that time. It is at this point that art merges with meditation.
Meditation isn’t always the act of clearing the mind. For example,Vipassana meditation is the practice of actively observing the deep interconnection of the body and mind. When you use art to express what is happening inside, it becomes a form of moving meditation, similar to yoga.
I first experienced the healing power of art during my graduate studies as I processed my mother’s death from breast cancer. By processing the loss on canvas, and through poetry, self-reflection, and, of course, written assignments, I found my way through the fog of loss and pain. It was a transformative experience; the art helped me express what words often failed to capture.
When I was diagnosed with breast cancer, I knew that art would be an important part of my emotional healing process. I tuned in to each flash of creative inspiration, trusting that these sparks would guide me. Creativity and wisdom often are fed by the same source.
To put this into practice, imagine we are sitting together, contemplating your personal experience with cancer. In front of you is a blank piece of paper, easy-to-use art supplies (like oil pastels, colored pencils, and charcoal), and, perhaps, clippings of words and images from a magazine. If I asked you to think of an important event in your cancer journey and then express it abstractly on paper, what would you draw?
Now, go and draw it.
♦ ♦ ♦ ♦ ♦
Stephanie McLeod-Estevez is an art therapist and breast cancer survivor. She began Creative Transformations to help others who are healing from a life-threatening illness or injury. Creative Transformations offers individual art therapy sessions (in person or via Skype), workshops, and a weekly blog. For more information, and to sign up for Stephanie’s weekly blog, visit creative-transformations.com.
Emotions and Cancer
by Kristin Kilbourn, PhD, MPH
A diagnosis of cancer can create a great deal of disruption in your life. You may experience multiple stressors, such as interruption of life tasks and goals, treatment side effects, financial difficulties, work- and family-related disruptions, changes in social networks, and uncertainty about the future. It is estimated that approximately one-third to one-half of all people diagnosed with cancer experience high levels of distress during their illness, and some may develop depression and anxiety disorders. Early identification of depression and anxiety is important so that you may receive timely treatment and minimize the potential long-term complications.
If you experience significant emotional or physical distress that does not improve over time, you may benefit from psychosocial intervention. Counseling provides a safe environment for you and your family to express your feelings without being judged or feeling as though you’re burdening others with your problems. You can attend therapy sessions on a regular basis or as needed. Many cancer survivors benefit from just a few visits, during which they can express their fears, concerns, and negative emotions and review adaptive coping techniques.
Psychosocial interventions can also help you manage some of the adverse side effects of cancer treatment, including pain, cancer-related fatigue, and cognitive challenges associated with treatment, such as chemo brain. Structured group interventions can assist with your psychosocial adjustment because they allow you to connect with others who have had similar experiences.
You can also do a number of things on your own to improve or maintain your emotional health while undergoing cancer treatment, including managing daily stressors, utilizing adaptive coping techniques, connecting with friends and family, re-evaluating your goals and priorities, and engaging in positive health behaviors.
Managing stress is an important component of good self-care because chronic stress can have a negative impact on physical and emotional well-being. Some activities that can alleviate or decrease the negative effects of stress include deep breathing, progressive muscle relaxation, imagery exercises, yoga, Tai Chi, walking and other forms of exercise, prayer or meditation, crafts and artistic endeavors, listening to soothing music, and regular engagement in pleasurable activities.
Coping strategies play an important role in maintaining and improving your emotional and physical health. To determine the appropriate adaptive coping response for a situation, you need to first identify the controllable versus uncontrollable aspects of the stressor and then determine which coping response will be the most effective.
♦ Problem-focused coping works best when you are dealing with a stressor that is controllable and changeable, such as determining where you should go for your cancer treatment. Some adaptive problem-focused coping strategies include seeking information, decision-making, setting goals, and asking for help.
♦ Emotion-focused coping works well for stressors that are uncontrollable, such as the diagnosis of cancer. Examples of emotion-focused coping strategies include reframing your thoughts, exercising, journaling, and acceptance.
Your Social Support Network
Individuals who engage in social activities and stay connected with family and friends tend to experience less distress. Social support is an important component of stress management and good mental health because it serves as a buffer for stressful life events, provides an outlet to talk about your feelings and emotions, and keeps you engaged in activities that serve as a diversion from your cancer experience.
While the experience of going through cancer treatment is typified as negative, many cancer survivors ascribe some positive benefits to the experience. When confronted with your own mortality, you may re-evaluate what is most important to you and emerge with a greater appreciation of life. For many, this can be a time of productive inner growth.
A Healthy Lifestyle
Maintaining good nutrition while undergoing cancer treatment can have a positive impact on both your physical and emotional health. Staying physically active can also help to decrease some of the side effects of cancer treatment. It’s important to talk to your medical providers about dietary and exercise recommendations. Additionally, sleep is often disrupted during treatment, and you may find that you need to try out different strategies to improve your sleep.
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Dr. Kristin Kilbourn is an associate professor in the department of Psychology at the University of Colorado Denver. She is a member of the University of Colorado Comprehensive Cancer Center and an adjunct faculty member in the departments of Internal Medicine and Psychiatry on the University of Colorado Denver Medical Campus.
Strategies to help you cope
by Ellen Manzullo, MD, FACP
Fatigue is one of the most common and distressing symptoms experienced by cancer patients and survivors. For some people, fatigue persists even years after completing treatment. Cancer-related fatigue is different from the fatigue we all experience in daily living. It is usually more severe, lasts longer, and can have a significant impact on your day-to-day life. Even simple activities like eating, bathing, talking on the phone, and grocery shopping can be difficult when you are experiencing cancer-related fatigue. In addition, the fatigue is often not related to recent activity, and normal rest might not help you feel more energetic.
Moreover, cancer-related fatigue is more than just a physical side effect. The fatigue can also be mental, as well as emotional. Those with mental fatigue may have trouble concentrating, performing simple mental tasks, and even reading a book. People with emotional fatigue may feel more irritable, anxious, or impatient. This, in turn, may cause difficulty in relationships with family and friends.
Many different factors can contribute to cancer-related fatigue. It can be caused by the cancer itself, or by cancer treatments (chemotherapy, radiation treatment, surgery, stem cell transplant, immunotherapy). Cancer-related fatigue may also be a sign of an undiagnosed medical condition, or one that is being inadequately treated. For example, heart disease, anemia, hypothyroidism, and sleep disorders (like sleep apnea) can all contribute to fatigue, as can pain, depression, and anxiety. Fatigue may also be triggered or exacerbated by certain medications (such as those used to treat pain, depression, anxiety, and nausea), as well as by what you eat.
When possible, delegate chores, such as strenuous housework, shopping, and laundry, to others.
For most people, cancer-related fatigue has more than one cause. And while the best way to manage fatigue is to treat the underlying cause, that can be difficult to pinpoint in cancer survivors. However, all hope is not lost. These fatigue-busting strategies can help you combat your cancer-related fatigue, no matter what the cause.
If you are experiencing cancer-related fatigue, there are many things you can do to conserve your energy. First, plan your most important activities for times of the day when you have the most energy. Routine tasks can be scheduled throughout the week. It’s important to pace yourself and schedule periods of rest. When possible, delegate chores, such as strenuous housework, shopping, and laundry, to others. At work, try to arrange your environment to conserve your energy, and plan your most strenuous tasks during times of peak energy.
A lack of good quality sleep can contribute to fatigue. However, you can take some simple measures to help you sleep at night. During the day, try to limit naps. If you do nap, try not to sleep for longer than 30 minutes. Make sure to exercise at least two to four hours before bedtime to give yourself time to recover. In the late afternoon and evening, avoid caffeine, chocolate, and alcohol. You may also want to limit liquid intake in the evening so that middle-of-the-night bathroom trips don’t disrupt your sleep.
Give yourself time to wind down at night. Starting at least one hour before bedtime, try to avoid mentally stimulating activities, such as watching TV, working on the computer, and playing video games. Make sure your bedroom environment is conducive to sleeping; it should be dark, cool, and quiet. If you have difficulty relaxing when trying to sleep, make a list of the things you need to do the next day, as this will likely help you relax. If you’re a “clock watcher,” turn the clock around. If you can’t fall asleep within 15 minutes, it’s fine to get up, go to another room, try listening to quiet music, and then go back to bed when you feel sleepy.
Aim to go to bed and wake up at the same time every day, even on the weekends. Spouses should try to go to bed at the same time as well. And, finally, if you’ve been told that you snore loudly or that you stop breathing while sleeping, you should discuss this with your doctor, who may refer you to a sleep specialist, as these are both signs of sleep apnea.
The foods you eat can affect your energy levels. It’s important to try to eat a well-balanced diet with the right number of calories. Your diet should also include plenty of protein, such as lean meats, fish, eggs, low-fat yogurt and cheeses, and peanut butter. If you can’t eat three square meals a day, try eating smaller meals more often. In addition, make sure you stay well hydrated by drinking eight 8-ounce glasses of non-alcoholic, non-caffeinated fluids each day. A registered dietitian can help you create a nutrition plan that addresses your fatigue, as well as any other dietary concerns you may have.
When you are feeling fatigued, exercise is probably the last thing you want to do. However, if you want to keep your energy levels up, it’s important to remain active. Studies have shown that cancer survivors who exercise have more energy, are better able to perform everyday activities, have a better quality of life, and enjoy an improved sense of well-being. Talk to your doctor before beginning any exercise regimen. Some people may even need an assessment from a physical medicine and rehabilitation physician or a physical therapist before beginning any physical activity. Once you have the all-clear, start slowly and give your body time to adjust to the increased physical activity. Walking is an easy exercise you can try while you’re just starting out. Exercise at your own pace, gradually increasing either the duration or the intensity of exercise (never both at the same time). Your goal should be to exercise for at least 30 minutes, five days a week.
Engaging in activities that you enjoy and that help you feel relaxed are beneficial in reducing your overall fatigue. Aim to set aside some time at least three days a week for an activity you enjoy. This can be listening to music, gardening, walking through a park, birdwatching, or visiting with friends and family. You could also try relaxation exercises or meditation. All of these things can be mentally and physically restorative. For many cancer survivors, fatigue is one of those side effects that you just can’t avoid. However, with these strategies for combatting cancer- related fatigue, you can learn to manage it and keep fatigue from taking over your life.
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Dr. Ellen Manzullo is a professor of Medicine at The University of Texas MD Anderson Cancer Center in Houston, TX. She is the clinical deputy division head for the Division of Internal Medicine and the clinical deputy department chair for the Department of General Internal Medicine. Dr. Manzullo is a general internist who evaluates and treats cancer survivors in the Fatigue Clinic at MD Anderson.
If fatigue persists and significantly interferes with your daily life, discuss this symptom with your healthcare provider right away.
New Normal? What’s That?
Moving Forward after Breast Cancer
by Nancy Stordahl
It’s been more than six years since my breast cancer diagnosis, so it’s time to start taking stock of things, or so I’ve been told. I’m supposed to be making good progress on picking up the pieces. I’m supposed to start putting cancer behind me and find my new normal, whatever that means. Society seems to be nudging – no, more like pushing – me to hurry up. Be done. Put it behind me. Move on. Forget about it. Get back to the way things were. The trouble is, it’s not that simple, or even possible. I will never be done with cancer. And guess what? I don’t even want to be.
Maybe you’re reading this and thinking who in her right mind would not want to be done with cancer? But the way I see it is this would be like erasing parts of my life. It would be like denying I have brown eyes, graduated from Madelia High School, have three siblings, taught second grade, am a happily married woman, and have three amazing kids. I don’t erase those parts of my life. Breast cancer is now part of who I am. How would I erase that, even if I could?
I’m reminded every day when I look in the mirror that I’m much altered physically. Then there are the emotional scars, which aren’t as obvious, but still are there. And, yes, I miss my breasts. Sometimes it seems I’m not supposed to think or say this, much less write about such a thing. After all, I’m alive. Shouldn’t this be enough? Well, yes, but I still miss them.
As for me, I haven’t figured out how anything cancer related can have any kind of normalcy to it, new or otherwise.
A Weird Kind of Normal
In a way, having a mastectomy has almost become some weird kind of normal. But it’s not normal. Then there is the reconstruction. Sometimes this process is made to sound easy, almost normal-like. Again, it’s not. Reconstruction is no “free boob job.” And though reconstructed breasts may turn out lovely, they are still reconstructed. They are still stand-ins for the real deal, a salvage job, or a cosmetic fix, at best. When I’m fully clothed, no one can tell by looking at me that I’m not the same as before. But I can tell. I know. And if a woman chooses not to do reconstruction, she might be looked upon with skepticism, perhaps even made to feel she must explain her reasons for opting out and making the “radical” choice she did. None of this is in any way normal-like, easy, or easily forgotten.
In addition to the physical and emotional scars left by a breast cancer diagnosis, there are the nasty, long-term and lingering side effects that are too numerous to list. And let’s not forget the most awful lingering “side effect” of all – living the rest of your life knowing cancer can reappear any time down the road. So it’s not really even possible to file away your cancer experience as “finished.” Cancer is never that tidy. Cancer is never over.
Cancer changes everything; it affects nearly every aspect of your life. It’s not just a bump in the road. If there’s one thing in life that definitely fits that game-changer cliché, cancer just might be it. Despite how things are often depicted in media, nothing about any of it is easy or easily forgotten. However, not forgetting doesn’t mean I’m stuck in Cancer Land or that I’m unable to move forward. I’m not, and I do. But I will do it in my own time and in my own way.
And then there’s survivorship. This part of the cancer experience isn’t easy either. In fact, it’s damn hard due to a whole variety of reasons. If you’re one of the “lucky” ones and able to finish up active cancer treatment, a whole other set of challenges awaits.
Once you land in this new and unchartered territory, you are once again inundated with far too many outside pressures and expectations about how to do this part of cancer too. The advice on finding that elusive new normal starts rolling in. It’s sometimes helpful, but often not. Some embrace the new normal concept. Others resist. As for me, I haven’t figured out how anything cancer related can have any kind of normalcy to it, new or otherwise. Nothing about cancer is normal. Nothing about survivorship is either; I’m still tiptoeing through it.
The “Gift” of Cancer
After a certain amount of time passes in your post-diagnosis life, society tells you you’re supposed to have learned some things and morphed into a new and improved version of your former self. This feels like one more “cancer obligation” you’re supposed to fulfill. Cancer does not miraculously make you a better person, or a worse one for that matter.
And here’s the real stunner for me. There is pressure out there to view your cancer experience as a positive thing, perhaps even to consider it to be something you are grateful to have gone through. Some go so far as to call cancer the best thing that ever happened to them, a gift even. Do you hear the fingernails on the chalkboard yet?
Calling cancer a gift or an opportunity for personal enlightenment makes a nice feature story in a magazine, but it’s not reality, at least it’s not my reality.
Calling cancer a gift or an opportunity for personal enlightenment makes a nice feature story in a magazine, but it’s not reality, at least it’s not my reality. Plus, it can be downright insulting to those with a stage IV diagnosis. Maybe it is just all semantics, but words matter. A lot. I will never be calling cancer a gift. People are gifts. Life is a gift. Cancer is not. This doesn’t mean I’m bitter, negative, or ungrateful. Mostly, it means I’m a person who lives in reality.
If looking at cancer as a gift works for some people, more power to them. I mean that. But as for me, this kind of thinking is unfathomable. Cancer was not, is not, and never will be a gift for me and my family. Despite the illusion created by pink ribbon culture, breast cancer is still a horrible, too often deadly disease, and nothing about it is pretty, pink, or gift-like. Period.
No one should feel pressured to accomplish profound things following a cancer diagnosis. No matter what your cancer stage, trying to reclaim and maintain your life and sanity will be profound enough. Trust me. You don’t necessarily need to throw out all your old ways and drive yourself nuts in the process. Make changes and improvements in your lifestyle choices, yes, but don’t go crazy worrying about every little thing you do or don’t do. Eat as healthy as you can, for sure. Exercise, yes, but don’t beat yourself up trying to run marathons or climb Mt. Kilimanjaro, unless, of course, you want to.
And you’re not obligated to write a blog or a book, mentor others, walk or run in races, deck yourself out in pink, start a foundation, or whatever it is you think you’re supposed to do now. You don’t have to do any of that stuff. Just getting back to living your life is a huge deal, and more than enough to figure out. No matter what stage cancer you were diagnosed with or where you are in treatment, figuring out your life post-diagnosis will keep you plenty busy. And there is only one way for you to do it – your way. Don’t allow anyone to tell you anything different.
Ditch the pressures and expectations. Who needs them? I wish someone had given me this little piece of advice at the start of my cancer maze. Maybe I had to figure it out for myself. Maybe we all do, but, by sharing, perhaps we can save each other some time and minimize some of the frustration.
For a lot of reasons, cancer will never be over for me. I’m moving forward, still slowly at times, but that is OK. In my mind, anyway, moving forward is different from moving on. Moving on seems to imply you should leave the past tucked neatly behind you. I prefer to think of myself as moving forward while taking my cancer experience with me. I move forward a changed person, but still the same.
Maybe this really just means I was flawed and not finished evolving before cancer, and I am flawed and not finished evolving today. I was just me. I am still just me. I will always be just me. And this is enough.
♦ ♦ ♦ ♦ ♦
Nancy Stordahl is a breast cancer survivor, former educator, and now a freelance writer and blogger at NancysPoint.com, where she shares candidly about all aspects of her cancer experience, pink ribbon culture, grief, survivorship, pets, and more. She is also the author of Getting Past the Fear: A Guide to Help You Mentally Prepare for Chemotherapy, as well as Cancer Was Not a Gift & It Didn’t Make Me a Better Person: A memoir about cancer as I know it, from which this article was adapted.
Do You Know Your Healthcare Rights?
5 Legal Tips for Cancer Survivors
by Stephanie Fajuri, Esq
As a cancer survivor, it’s important to know your legal rights so you can advocate for yourself, before legal issues become a problem. Don’t wait until an issue arises to learn your legal rights. Here are the top five most common legal issues faced by cancer survivors, plus tips on how to deal with them.
It is your responsibility to understand your health insurance coverage. Too often, we assume that the doctors and nurses treating us understand our insurance coverage, and that they know better than to suggest treatments that aren’t covered or that we can’t afford. Unfortunately, this is not always the case. To save yourself frustration – and, possibly, significant medical debt – down the road, it’s important for you to take the initiative to learn as much about your insurance coverage as you can so you’re not left with unexpected bills.
For starters, thoroughly review your summary plan description or evidence of coverage booklet, both of which are usually available online. If you have questions about your plan, call your insurance company, and take detailed notes about what the customer service representative tells you. And if it’s too much to handle on your own at the moment, ask a trusted friend or family member to help you. Insurance can be confusing, but knowing what’s covered can help you plan accordingly.
If cancer and the effects of treatment are making certain aspects of your job more difficult, you might be entitled to something called a reasonable accommodation. The Americans with Disabilities Act protects workers with disabilities from discrimination at companies with at least 15 employees, and people with cancer are usually considered “disabled’ under the ADA. If you work for a smaller employer, check to see if your state’s fair employment law covers you. Not only are employers who are bound by these laws prohibited from discriminating against you if you have cancer, but they also might have to make changes to the work environment that help you to keep doing your job, as long as the changes you request aren’t too expensive or too difficult for your employer to make.
For example, changing your work schedule so you can go to doctors’ appointments or chemo treatments, allowing you to work from home, or even adjusting the office temperature might be considered a reasonable accommodation, depending on your job. Keep in mind that you need to ask for workplace accommodations before your work performance is affected. If you start showing up to work late, missing work, or missing deadlines, your employer might be allowed to write you up or even fire you if they were not aware of your need for an accommodation.
3. Time Off from Work
You don’t have to quit your job just because you have cancer. The Family and Medical Leave Act provides up to 12 weeks of unpaid job- and health benefit-protected leave for eligible employees.
You need to ask for workplace accommodations before your work performance is affected.
If you have worked for your employer for at least a year, you’ve worked 1250 hours in the last year, and your employer has at least 50 employees within a 75-mile radius of where you work, you might be able to take FMLA leave for yourself if you are sick, or if you’re a caregiver for your spouse, parent, or child who is. Under FMLA, you can take the 12 weeks all at once, or in smaller increments. So, whether you are having surgery with a long recovery or only need one day off per week for treatment, you may be able to use FMLA leave.
If you don’t qualify for FMLA, you might still be able to take time off as a reasonable accommodation under the Americans with Disabilities Act (see tip 2 above). It’s also a good idea to check your employee manual or talk with Human Resources about medical leave, since some larger employers provide even more time off than the law requires.
Cancer treatment is expensive, even if you have great insurance coverage. Since you might not be able to prevent taking on some debt, prioritizing which debts you pay first can help improve your quality of life.
There are two main types of debt: secured and unsecured. Secured debt is a debt that is tied to a piece of property (like a home or a car), called collateral, which means that if you don’t pay the debt, that property can be repossessed. Unsecured debt is not linked to collateral. If you don’t pay an unsecured debt, the company or person you owe cannot get anything from you unless they get a judgment against you in court. Examples of unsecured debts are credit cards, medical bills, and student loans.
Sometimes it can be a good idea to prioritize paying for necessary expenses over unsecured debts. For example, if you need your car to get to and from treatment, you will need to keep making your car payment so it doesn’t get repossessed. Also, a landlord or bank can start eviction or foreclosure proceedings if you don’t pay your rent or mortgage, even if you have cancer. Since having a place to live is essential, you might want to prioritize paying your rent or mortgage instead of making your credit card payment.
Denial of Coverage
When it comes to getting insurance coverage for a treatment you need, don’t take no for an answer. If your health insurance company denies coverage of a certain service or treatment, you should likely appeal the decision. First, you usually have to appeal directly to your insurance company to get them to reconsider their decision. If they still say no, most people with private health insurance now have access to an external insurance appeals process, sometimes called an Independent Medical Review, thanks to the Affordable Care Act. An external appeal is where an independent third party reviews your request to see whether the insurance company was right in denying you coverage.
Additionally, most people are denied Social Security Disability benefits the first time they apply. If you apply for Social Security Disability Insurance or Supplemental Security Income because you are disabled and no longer able to work, and you are denied benefits, you have a better chance of getting approved and receiving back-pay you might be entitled to if you appeal, rather than submit a new application. You usually don’t need a lawyer for the first Social Security appeal, but it can be helpful to hire a lawyer if you reach the second level of appeals and are scheduled for a hearing.
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Stephanie Fajuri is the supervising attorney at the Cancer Legal Resource Center, a national program of the Disability Rights Legal Center in Los Angeles, CA.
Learning your rights and how to enforce them can help prevent legal problems down the road. The Cancer Legal Resource Center empowers survivors to learn their legal rights so they can advocate for themselves, before legal issues become a problem. The CLRC provides free education and resources on cancer-related legal questions to cancer survivors, caregivers, and healthcare professionals. For more tips or answers to your cancer-related legal questions, contact the CLRC at (866) 843-2572 or visit CancerLegalResources.org.
Disclaimer: Through this article, the author is not engaged in rendering any legal or professional services by its publication or distribution. It is not intended to be legal advice or to establish an attorney-client relationship.
Cheers to the Holidays…
Even with Cancer
by Kaylene Chadwell
For most, the holiday season is a wonderful time of year, filled with cherished traditions and time spent with loved ones. However, when you’re dealing with cancer, the holiday hubbub of decorating, shopping, cooking, planning, and cleaning can become exhausting and stressful. While there’s no right or wrong way to celebrate, here are some tips to help you have a cheerful, stress-free holiday season.
Remember the reason for the season.
Think about what the holiday season means to you. Focus on what’s most important to you and your family. Don’t get too wrapped up in getting the best gift for loved ones or making the perfect family dinner. Appreciate being around the people you love and enjoy the memories you make.
Set realistic expectations.
Don’t feel like all your holiday celebrations need to be “perfect.” Overextending yourself and your body in the flurry of festive activities can cause stress, which can make you miss valued quality time with friends and family.
Be with people who lift your spirits.
Spend time with people who make you happier, and not those who drag you down. Don’t feel like you have to spend time around negative relatives just because it’s the holiday season. When you have limited time and energy, it’s best to spend it with the people who matter most to you.
Be open to change.
There may be some holiday traditions you just don’t have the time or energy to participate in. Don’t dwell on how cancer has changed your holidays. Modify your usual holiday traditions to meet your needs this year, or create new ones that make the most of your energy. Enjoy those special moments you have with your loved ones.
Remember the reason
for the season.
Focus on what’s most important to you and your family.
It’s OK to say no.
Don’t feel obligated to be involved in all the festivities that come your way. Saying yes to everything can lead to stress and exhaustion during this busy time of year. Your loved ones will understand if you can’t participate in every holiday activity. Limit yourself to what you can manage and enjoy.
Ask for and accept help.
You don’t have to do it all, especially by yourself. If someone offers help, accept it. This will help you preserve your energy during the long holiday season. Be realistic about what you can do. If there are certain traditions you want to continue this year, it’s OK to ask for help to make them happen.
Sometimes the holidays get so busy we forget to relax. Set aside days where you don’t have much planned. Take a bath. Read a book by the fireplace. Spend time alone to get away from all the holiday craziness.
Maintain a regular routine.
Try to keep your normal mealtimes and sleep schedule. Don’t miss meals. Keep late nights and long days to a minimum, especially when you’re feeling tired. Don’t compromise your health for holiday festivities.
Be mindful of your eating habits.
It’s easy to overindulge when there are holiday parties and seasonal goodies everywhere you look. Control your portions. Eat balanced meals, and avoid drinking excessive amounts of alcohol. Give your body plenty of the healthy food it needs.
It’s easy to bypass exercise during the holidays, but it’s important to make time for it. Get your loved ones involved. Go on walks with family members, or build a snowman with the kids. Physical activity can help you feel better mentally and physically and give you more energy. Just make sure to talk with your doctor before starting any exercise program.
You may not have the time or energy to do some activities during this bustling time of year. Figure out what is most important to you and your loved ones. Making a list of the holiday activities you want and need to do can help you see which ones you can skip this year.
Listen to your body.
You won’t always feel up for participating in holiday events. Avoid overworking your body and mind. Take a break from all the festivities when you need to. It’s important to balance activity and rest throughout the holiday season.
♦ ♦ ♦ ♦ ♦
Your Guide to Bladder Cancer Treatment
Different types of treatment are available for people with bladder cancer. Some treatments are standard (the currently used treatment), and some are being tested in clinical trials. There are four types of standard treatment for bladder cancer:
♦ Radiation therapy
♦ Biologic therapy
If you’ve been diagnosed with bladder cancer, your doctor may recommend one of the following types of surgery:
♦ Transurethral resection (TUR) with fulguration: Surgery in which a cystoscope (a thin lighted tube) is inserted into the bladder through the urethra. A tool with a small wire loop on the end is then used to remove the cancer or to burn the tumor away with high-energy electricity. This is known as fulguration.
♦ Radical cystectomy: Surgery to remove the bladder and any lymph nodes and nearby organs that contain cancer. This surgery may be done when the bladder cancer invades the muscle wall, or when superficial cancer involves a large part of the bladder. In men, the nearby organs that are removed are the prostate and the seminal vesicles. In women, the uterus, the ovaries, and part of the vagina are removed. Sometimes, when the cancer has spread outside the bladder and cannot be completely removed, surgery to remove only the bladder may be done to reduce urinary symptoms caused by the cancer. When the bladder must be removed, the surgeon creates another way for urine to leave the body.
♦ Partial cystectomy: Surgery to remove part of the bladder. This surgery may be done for people who have a low-grade tumor that has invaded the wall of the bladder but is limited to one area of the bladder. Because only a part of the bladder is removed, people who have this type of surgery are able to urinate normally after recovery. This type of surgery is also called segmental cystectomy.
♦ Urinary diversion: Surgery to make a new way for the body to store and pass urine.
Biologic therapy is a treatment that uses a person’s immune system to fight cancer.
The way the radiation therapy is given depends on the type and stage of the cancer being treated. External radiation therapy is the type used to treat bladder cancer.
The way chemotherapy is given depends on the type and stage of the cancer being treated. Even if your doctor removes all the cancer that can be seen at the time of surgery, some people may be given chemotherapy after surgery to kill any cancer cells that are left. Treatment given after surgery, to lower the risk that the cancer will come back, is called adjuvant therapy. For some bladder cancer survivors, regional chemotherapy may be put into the bladder through a tube inserted into the urethra. This is called intravesical therapy.
Biologic therapy is a treatment that uses a person’s immune system to fight cancer. Substances made by the body or made in a laboratory are used to boost, direct, or restore the body’s natural defenses against cancer. This type of cancer teatment is also called biotherapy or immunotherapy. Bladder cancer may be treated with an intravesical biologic therapy called BCG (bacillus Calmette-Guérin). The BCG is given in a solution that is placed directly into the bladder using a catheter.
After starting treatment for bladder cancer, follow-up tests may be needed. Some tests will be repeated in order to see how well the treatment is working. Decisions about whether to continue, change, or stop treatment may be based on the results of these tests. Some of the tests will continue to be done from time to time after treatment has ended. The results of these tests can show if your condition has changed or if the cancer has recurred.
Recurrent Bladder Cancer
Bladder cancer often recurs, or comes back, even when the cancer is superficial. Treatment of recurrent bladder cancer depends on previous treatment and where the cancer has recurred. Surveillance of the urinary tract to check for recurrence is standard after a diagnosis of bladder cancer. Surveillance involves closely watching your condition but not giving any treatment unless there are changes in test results that show the condition is getting worse. During active surveillance, certain exams and tests are done on a regular schedule. Surveillance may include ureteroscopy and imaging tests.
♦ ♦ ♦ ♦ ♦
New types of treatment for bladder cancer are being tested in clinical trials. To learn more about clinical trials, visit cancer.gov/clinicaltrials.
Source: National Cancer Institute, cancer.gov
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, September/October 2016.
A Recipe for Getting the Nutrition You Need during Cancer Treatment
by Holly Clegg
Anyone who’s been diagnosed with cancer knows that cancer and the side effects of treatment can affect the body in many different ways. People undergoing cancer treatment may experience loss of appetite, taste and smell changes, sore throat, diarrhea, constipation, and a lack of energy. All these changes can make maintaining adequate calories and nutrition difficult.
However, it’s important for cancer survivors to make sure that good nutrition doesn’t fall by the wayside during treatment. A healthy diet can help you keep up your strength and boost your immune system. What you eat may also make a difference in how well you handle treatment.
When going through treatment, your diet is in constant flux, changing with taste, intolerance of certain foods, and caloric needs. However, despite these challenges, it is possible to eat well and stay properly nourished during cancer treatment.
What to Eat during Chemo
On the morning of your scheduled chemotherapy treatment, try eating a low-fat, light meal. For example, cereal, toast, oatmeal, grits, or fruit salad. In the 24 hours following treatment, you may want to stick to liquids, soups, puddings, and sandwiches. Try to avoid high-fat, fried, or greasy foods for the first 24 to 48 hours following treatment. Instead, opt for easier-to-tolerate foods and lighter recipes to help boost your immune system and give you strength and energy. Supplemental nutritional drinks, like Boost, are also good choices if you don’t feel like eating solid foods.
If you find that only two foods appeal to you, then there is nothing wrong with eating those two foods until you feel ready to expand your diet. If breakfast food is what appeals to you, then go ahead and have it for dinner also.
The Importance of Snacking
Snacks are strongly encouraged during cancer treatment, as it is sometimes easier to eat several small meals or snacks throughout the day rather than three large meals. Eating high-calorie, low-volume snacks can help you maintain your weight when your appetite just isn’t there. Keep cheese, dips, fruit, nuts, popcorn, and crackers on hand for quick snacks. Smoothies also make good snacks, especially for people with mouth sores or those for whom strong smells are off-putting. Not to mention, smoothies are a good way to sneak extra fruit and veggies into your diet.
Pile on the Protein
When going through cancer treatment, it’s important to avoid losing too much weight. Research has shown that cancer survivors who maintain their weight and eat a healthy diet have fewer complications from chemotherapy, radiation therapy, and surgery – with shorter hospital stays, reduced illness, and fewer infections. They also tend to better preserve their strength and have an improved sense of well-being.
Adding protein to your diet can help you maintain a healthy weight, give your body fuel to build and repair tissues, and protect your immune system. Without enough protein, your body may take longer to recover from illness, and you may have a lower resistance to infection. Following surgery, chemotherapy, or radiation therapy, most cancer survivors need additional protein to help the body heal damaged tissue and to help prevent infection. Good sources of protein include legumes, eggs, nuts and seeds, peanut butter, cheese, beef, and chicken breasts. You can also add a little nonfat instant dry milk to scrambled eggs, soup, cereal, and sauces to infuse some extra protein into your diet.
Don’t Forget to Hydrate
Hydration is essential during cancer treatment. Try keeping a glass of water with you at all times. I recommend drinking eight to ten glasses of water per day.
Fix It with Food
The following tips will guide you through the right foods to eat to help ease common side effects of cancer treatment.
Some survivors experience sore mouth symptoms about seven to ten days after certain chemotherapy treatments. A common remedy for preventing ulcers and alleviating mouth soreness is to rinse your mouth after each meal with a solution of one teaspoon of baking soda, combined with a teaspoon of salt, and mixed in a quart of water. You can make a fresh solution each morning and discard any left over at the end of the day.
If you have mouth sores, try eating soft or puréed foods, such as puddings, creamed soups, cooked cereals, mashed potatoes, and soft pastas. Cut food into smaller pieces, and try drinking liquids and puréed foods through a straw. This is also a good time to use plastic utensils, as metal flatware can leave a metallic taste in your mouth.
Many people find that chilled foods or foods served at room temperature are easier to handle when you have sore mouth symptoms. Conversely, raw foods tend to irritate a sore mouth and should be avoided. It’s also best to avoid acidic foods and salty foods, including citrus fruits, tomatoes, crackers, and alcohol, as these may further irritate the mouth.
Nausea and Vomiting
If you’re experiencing chemo-induced nausea and vomiting, make sure to drink plenty of fluids to prevent dehydration. Sip water, or other clear liquids, throughout the day. Many people find that clear, cool liquids go down easier than drinks that are hot or icy. Once vomiting has stopped, ease into eating easy-to-digest foods such as clear liquids, plain crackers, gelatin, and plain toast.
Diarrhea can follow certain chemotherapy or radiation treatments. When diarrhea occurs, the first thing you should do is stop all intake of stool softeners, laxatives, and high-fiber foods (such as nuts, seeds, whole grains, legumes, dried fruit, and raw fruits and vegetables). Then, fast for two to four hours before starting clear liquids. Following your initial fast, be sure to sip fluids throughout the day to replace those lost by diarrhea and to prevent dehydration. Water, clear soup, broth, flat soda, and sports drinks are all good options. Once the diarrhea begins to subside a bit, and you feel ready to begin eating again, start by introducing bananas, rice, applesauce, and toast, also known as the BRAT diet.
Many people experience constipation throughout cancer treatment. A diet that is rich in fiber can help alleviate constipation. Try to make sure that every meal you eat contains at least three grams of fiber. You can do this by tossing veggies into soups, sauces, and casseroles, or by snacking on foods containing whole grains, such as oatmeal, popcorn, barley, and cereals.
♦ ♦ ♦ ♦ ♦
Holly Clegg is a cookbook author and coauthor (with oncologist Gerald Miletello, MD) of Eating Well Through Cancer: Easy Recipes & Tips to Guide You Through Treatment and Cancer Prevention, which has recently been re-released as a special revised and expanded 15th Anniversary edition. Visit HollyClegg.com to learn more.
You can find recipes and more tips from Holly at TheHealthyCookingBlog.com.
How to Make Exercise a Part of Your Post-Cancer Life
by Nancy Campbell, MS
It has been six years since the American College of Sports Medicine published their recommendations that all cancer survivors should strive to avoid inactivity. Since then, research has continued to show that rates of cancer recurrence are lower in survivors who are physically active on a regular basis. Not only that, but regular exercise has been shown to help ease many of the side effects of cancer treatment.
In fact, exercise is one of the most important activities you can pursue to give yourself an extra boost during and after cancer treatment. And the good news is you don’t have to become an elite runner or join a CrossFit gym to reap the benefits. You just need to add physical activity into your daily routine. Here are some tips to help you get started.
Start low and go slow.
Before you start exercising, you should check in with your medical team to make sure they don’t have any concerns about you beginning an exercise program. Once they have given you clearance, it is important to start slowly. And make sure your activity is enjoyable, not exhausting.
As you begin establishing a routine, set yourself up for success by finishing each round of exercise knowing you could have done a little bit more. You want to avoid doing a big bout of activity that leaves you exhausted and unable to exercise again a day or two later while your body is recovering from treatment. As you get stronger, try exercising in two or three 10-minute bursts over the course of the day.
Exercise should be more than a single event in your day.
The goal is to stay as active as possible throughout the day.
Keep track and set goals.
There are so many ways to keep track of your progress with exercise. Maybe it’s a calendar on your refrigerator or a wearable activity tracker, like Fitbit. The main goal of tracking your exercise is to keep you aware of how much activity you are getting and to remind you to stay active.
In the beginning, it’s best to focus on being consistent with your exercise routine, rather than worrying about the duration or intensity of your workout. This will help your body gradually adjust to incorporating activity into your lifestyle.
Exercise should also be more than a single event in your day. The goal is to stay as active as possible throughout the day. Look for creative ways to add more movement into your day. For example, many activity trackers will alert when you have been inactive for more than an hour. You could also set a reminder on your phone or your computer that signals you to get up every hour and move around. Another tip is to park farther away when you are running errands, or get off the bus one stop earlier and walk that extra block.
Many people find it useful to set a daily or weekly exercise goal to keep them on track. Just make sure that
your goal is S.M.A.R.T.:
♦ S pecific
♦ M easurable
♦ A ttainable
♦ R elevant
♦ T ime-bound
For example, instead of saying “I will exercise more,” try setting a more concrete goal: “I will walk for 20 minutes at 10 o’clock on Monday, Wednesday, and Friday mornings.” Setting goals like this will keep you moving forward as you are focusing on making small changes that will help you reach your overall wellness goals.
Fighting Fatigue with Exercise
Fatigue is one of the most common and frustrating side effects of cancer treatment, and exercise is one of the best ways to boost your energy. It seems counterintuitive, but even a short walk around your house, or to the end of your driveway and back, can help take the edge off cancer-related fatigue.
Look for resources.
Many different programs are available to help cancer survivors stay active. For example, YMCAs across the country offer LIVESTRONG at the YMCA, a 12-week physical activity program designed to get cancer survivors back on their feet. In addition, many hospitals and wellness centers offer movement classes that are designed for cancer survivors. Check with your healthcare team to see if one is available in your area. If you are struggling with side effects from treatment, like neuropathy, that make it difficult to exercise, a physical therapist, occupational therapist, or cancer exercise specialist can help tailor an exercise program to meet your unique needs.
Don’t be too hard on yourself.
Be kind to your body as you are recovering from treatment and easing into exercise. I always say, 10 percent of something is better than 100 percent of nothing.
♦ ♦ ♦ ♦ ♦
Nancy Campbell is an exercise physiologist who offers fitness consults and classes to cancer survivors through Dana-Farber Cancer Institute’s Adult Survivorship Program and Zakim Center for Integrative Therapies in Boston, MA. For more information, visit DanaFarber.org/exercise.
Many hospitals are now researching exercise and have clinical trials that you may be eligible for. These can be a great tool to help you get active or stay motivated as you pursue physical activity. You can find these trials by visiting ClinicalTrials.gov and entering exercise and cancer in the search box.
Finding My Strength
How Coming to Terms with My Prostate Cancer Diagnosis Became a Transformative Experience
by Richard S. Hillman
When I heard the doctor say prostate cancer, it felt as if I was struck by a bolt of lightning. My wife, Audrey, and I had moved to Florida to enjoy an active retirement. A few sets of tennis and a swim were on our daily agendas. Not this. It seemed our world would crumble.
“Treatment is risky,” I said. Audrey gave me an accusatory look. “I don’t want you to die any time soon,” she said. Was she trying to scare the hell out of me?
“I’d be half-dead with erectile dysfunction or incontinence,” I whispered. My healthy lifestyle and overall fitness had imbued me with a sense of invincibility. Mortality had always been a theoretical concept, the subject of college debates or accountants’ actuarial charts. But now, life had become fragile and tenuous. My heart throbbed like a frightened child’s.
Audrey read me like a book: “Don’t be a baby! What good is dwelling on worst-case scenarios? If it metastasizes ...” Visions of discolored, rotten tissue spreading through my guts sent chills down my spine.
The anger which had supplanted my fear gradually subsided, and I opted for two months of IMRT, intensity-modulated radiation therapy. In the radiation oncology waiting lounge, we saw people representing a diverse spectrum of ages, races, and social groupings. None looked particularly nervous. I tried to relax, yet felt like a fish out of water. My self-image as an athletic macho was being tested.
“How are you today?” the nurse asked.
“Anxious.” Knowing that doubt and fear would exacerbate my physical condition did not prevent me from becoming an insomniac obsessed with my health.
My imagination had often frazzled my nerves. Irrational fear and negativity resulted in nightmares and fatigue.
“That’s natural,” she said. Ironically, the signs adorning the hospital walls were disquieting: “Live in the moment!” “Have faith!” These admonishments to focus on the bright side had the opposite effect on me.
During radiation sessions, I had to remain still while the machine hovered around me. I felt like the subject of a scientific experiment, although background music and a photographic mural on the ceiling provided pleasant diversions. “You might experience fatigue, urinary burning, or diarrhea,” my doctor said, “but nothing we can’t deal with.”
Throughout treatment, I continued to play tennis and swim. My life went on as normal. Yet, in some ways, it was on hold. I felt as if I were in limbo, a difficult position for some- one who seeks certainty. Impressed and heartened by the supportive atmosphere, and with Audrey continuously at my side, I began to feel hopeful. “Just relax. You’re in good shape. Keep active,” everyone encouraged. But that did little to assuage my lingering apprehension that the entire experience was illusory.
Most people are shocked when they hear the words prostate, cancer, or radiation. Friends either are at a loss for words or try to commiserate. Family members want to console. Those who had prostate cancer want to share their experiences. The problem is that each person’s age, physical condition, emotional status, and stage of the disease call for different approaches. It felt as if Audrey and I were on a lonely journey.
My imagination had often frazzled my nerves. Irrational fear and negativity resulted in nightmares and fatigue. Yet hope and optimism produced physical strength and a sense of well-being. So I had to trust expert opinions regarding numerical ranges and probabilities, something that does not come easy to a skeptic. The fellow who preceded me in the treatment room invariably remarked with a broad smile, “Get in there and kill those critters!” His down-to-earth testimony to the power of a positive attitude inspired me to face reality head on.
Audrey helped me stay on schedule. As treatment progressed, time appeared to accelerate, and, finally, the last session snuck up on us. Shortly thereafter, a heavy weight seemed to fall off my shoulders when we were informed that the treatment had been effective. Initially, my fear caused denial, anger, and depression. Yet this challenge, accompanied by caring support, evoked a newfound humility and strength in me. For this, as a prostate cancer survivor, I am truly grateful.
♦ ♦ ♦ ♦ ♦
Richard S. Hillman, a prostate cancer survivor living in Hudson, FL, is the author of Tropical Liaison, a political thriller set in the Caribbean. To learn more, visit RichardSHillman.com.
ESPN’s Holly Rowe Refuses to Let Cancer Win
“Fight every moment so that cancer is not the most interesting thing about you.”
by Kaylene Chadwell
You can’t watch college football (or basketball, or softball, or the NBA, or WNBA) without seeing Holly Rowe. A Sports Emmy nominee, Holly is one of ESPN’s most popular college football sideline reporters, as well as a play-by-play commentator for a wide range of sports. She’s the one interviewing players and coaches before, during, and after games, asking the hard-hitting questions. Known for her ability to always get the job done, even going so far as to climb on top of a table to make sure she got her post-game interview, Holly is widely respected by top coaches and players, as well as her ESPN colleagues.
Over the past two years, though, Holly’s unconquerable spirit has been put to the test as she fights a rare form of cancer, all while she continues to travel and work for ESPN. According to Holly, one day she’s undergoing intravenous immunotherapy infusions, and the next she’s reporting from the sidelines of the Texas vs. Notre Dame football game.
“I just can’t sit at home and feel sorry for myself.
If I limit my schedule and don’t do what I love,
then cancer is winning a little bit.”
“I’ve gone some days where I’m at the hospital all day getting blood drawn or getting infusions,” Holly shares with Coping magazine, “and, the next morning, I have to fly out and cover a football game. It’s just a very weird life to go from being a cancer patient one day to being an ESPN sideline reporter the next.”
Holly Rowe interviews Coach Geno Auriemma of the University of Connecticut Huskies during the 2016 NCAA Women’s Basketball Final Four game.
(Photo by Allen Kee / ESPN Images)
Holly was first diagnosed in May 2015. She explains, “I had a spot on my chest that looked ugly, and I thought, Oh, I’m going to go get this removed, thinking it was no big deal.”
However, the “ugly spot” turned out to be desmoplastic melanoma, a rare, invasive form of the deadly skin cancer. While her doctor was able to surgically remove it, with clear margins, Holly admits she was shocked by the diagnosis.
“I think every single person who hears that word – cancer – just panics,” she reveals. “It’s a frightening thing. And I just felt this disbelief. I’m a young, healthy, go-getter, scrappy person. How could this possibly be?”
After another melanoma was found in January of this year, Holly underwent a second, more invasive surgery to remove it, along with 29 lymph nodes. Then she entered a clinical trial where she endured 30 grueling days of infusions. “It was really, really awful,” Holly admits. “I wouldn’t wish that on anyone. But I made it through.”
However, she had a recurrence shortly after, which necessitated another treatment protocol. She’s now undergoing a different type of immunotherapy treatment, one she anticipates being on for the next two years, going in every three weeks for infusions.
“It’s just a very weird life to go from being a cancer patient one day to being an ESPN sideline reporter the next.”
Through it all, though, Holly has continued doing the work that she says brings her joy. “I think I’m getting lifted up greatly by working and seeing inspiring athletes,” she says. “I’m lucky because my job is inspirational, watching other people succeed.
“A lot of people question why I do work and try to keep being such a go-getter,” she admits. “And it’s simple, because I just can’t sit at home and feel sorry for myself. If I limit my schedule and don’t do what I love, then cancer is winning a little bit. For me, it’s a way to keep my mind off the stress of it.”
Another thing that Holly says has helped her as she fights cancer is the support she’s received from her family, especially her son, Mckylin. She declares they have been the backbone throughout her cancer journey. Her colleagues, the coaches and players she covers, and, of course, her many fans have also shown incredible support. “I’ve just had an outpouring of support,” she says. “Every single day, I have tons of messages on social media. It’s so great because it just keeps me going knowing that people are there for me.”
Holly Rowe catches up with University of Oklahoma Sooners shooting guard Buddy Hield during a 2016 regular season game.
(Photo by Phil Ellsworth / ESPN Images)
Holly tries to stay connected to those who are supporting her by sharing her journey, mostly through social media. For her, it’s also a way to show solidarity with other cancer survivors. For example, in July, she posted a video to Facebook of her head being shaved. She wrote, “So today was interesting. Had to have a little fun with this and laugh so I don’t cry!!! Much love to all cancer patients going thru this. Let’s be strong together.”
Surprisingly, Holly admits that losing her hair has been one of the most difficult parts of the cancer experience so far. “This sounds so shallow and ridiculous,” she confesses, “but I had gone through hideous treatment and other really tough parts of having cancer, and, for some reason, my hair falling out was the toughest thing I went through. It makes you feel vulnerable and sick. There’s something about when it changes the way you look, when cancer changes how you look at yourself and what you look like in the mirror, that gets to you. It’s like, Now, I’m a cancer patient.”
But she didn’t let her bald head get to her for long. Though she sometimes wore wigs for on-air coverage, Holly didn’t shy away from displaying her baldness proudly. And beautifully, too, for that matter. In the process, she’s become an inspiration to other women battling cancer, showing definitively that you can be bald and beautiful.
Now, as her blond hair grows back in, short and spiky, Holly is keeping tabs on her cancer with periodic scans and plans to continue sports reporting for ESPN. After all, it’s not just a job to her; it’s a passion.
“I just did a game that was the best game I’ve been at in probably 20 years – the WNBA Championship Finals Game 5,” Holly shares. “I left that arena, and I was just overwhelmed, blown away. I am so grateful that I was here for that – that I have fought through this cancer and not given up, so I can be here for moments like this.”
Holly’s Words of Inspiration for Cancer Survivors
♦ It’s easy to let cancer take over your life and to be consumed by the treatments and the schedules and the appointments and the not feeling good. Fight every moment so that cancer is not the most interesting thing about you, and it’s not the thing that’s consuming your day – that way you’re living a full and peaceful life.
♦ My doctor said it’s very good for people with cancer to have positive attitudes and to want to fight. For me, that means working and doing the things I love.
♦ Let’s make everything important. Let’s make everything worthwhile. There’s so much we worry about and stress about that has no impact on what life is really all about. So try to eliminate the dumb stuff, whether that’s worry, or wasting time, or minor problems. Let’s just get rid of them.
♦ You can’t let cancer control your life or your thoughts, because it’s easy to let it. It’s easy to let the fear creep in and control you.
♦ Ask for help! Don’t be ashamed to be vulnerable and ask for help when you need it. People want to feel helpful and support you.
♦ There’s a lot of us who are going through this, and we can help each other and let each other know, ‘Hey, this is okay.’ Let’s start doing this together. Let’s laugh at this together. There’s no owner’s manual for cancer.
♦ ♦ ♦ ♦ ♦
Keep up with Holly Rowe on Twitter @sportsiren.
Answers to Your Questions about Lung Cancer
What does my lung cancer diagnosis mean for me?
After being told you have lung cancer, you may wonder what your prognosis will be – what this diagnosis means for your future and your health. You may see estimates of how long a person may live after a particular type or stage of lung cancer is diagnosed and assume that this is what will happen to you. Try not to think this way. Remember:
♦ You are not a statistic. Statistics cannot predict what will happen to you. You are a unique individual, and no one can predict exactly how your body will respond to your lung cancer and treatment. Lung cancer statistics estimate the average survival for all people with a specific type and stage of lung cancer.
♦ Lung cancer statistics are based on information from studies that were done from three to ten years ago. Today’s newer therapies have not been around long enough to affect the statistics, so your prognosis may be far more hopeful than the statistics suggest. The chances of being cured of lung cancer depend mostly on the stage of lung cancer you have. Early-stage cancer is the easiest to treat and has the best chance of being cured. If the cancer has spread to other places in the body, the goal of treatment is to keep the cancer under control for as long as possible. If you have read or are told that your cancer cannot be cured, remember that incurable cancer can be treated and may be stabilized. Newer treatments are helping some people with lung cancer live good, meaningful lives for years after their diagnosis.
What are my treatment choices?
Chemotherapy, radiation, surgery, targeted therapies, and immunotherapy are the main treatment options for lung cancer. However, a number of factors can affect which treatments will be best for you; these factors include your cancer’s particular type and stage, location, and genetic or other molecular characteristics. Promising new treatments may be available through clinical trials, so be sure to ask your doctor about these options.
You are a unique individual, and no one can predict exactly how your body will respond to your lung cancer and treatment.
How long will my treatment last?
The length of your treatment will depend on the type and stage of lung cancer you have and how well you respond to treatment. Your treatment plan will be explained to you before therapy begins. If you have questions, be sure to ask your doctor or care team. You will receive regular check-ups to see how your treatment is working. If your cancer does not respond to the first treatment you receive, your doctor may discuss other treatment options with you.
Should I consider joining a clinical trial?
Clinical trials are research studies that measure how well new drugs, treatments, or tests work, or that help doctors learn more about cancer or other diseases. Trials are generally available for every stage and type of lung cancer, although every individual may not be eligible for a given trial. Many people fear they will receive a placebo if they participate in a clinical trial. When placebos are used in a trial, participants almost always receive them in addition to standard, proven treatments. Moreover, participants are always fully informed if they join a trial where they may receive a placebo. To talk to someone about the clinical trials available to you, visit the EmergingMed clinical trial matching service website, EmergingMed.com, or call (800) 698-0931.
What is chemotherapy?
Chemotherapy is a word used for drugs that kill cancer cells, usually by disrupting how the cells divide. Chemotherapy is based on the principle that cancer cells grow and divide more rapidly than nor- mal cells. However, because some normal cells (hair cells, for example) also grow and divide rapidly, chemotherapy can sometimes kill those cells as well.
What are targeted therapies?
Targeted cancer therapies are treatments or drugs that specifically interfere with the ways cancer cells – and not normal cells – survive, grow, and spread. These drugs “target” specific molecules (genes, proteins, etc.) in the tumor cells, and therefore are more specific to cancer cells than chemotherapy is, thereby causing less damage to normal cells. Not all tumors have the same abnormal targets, so your doctor may take a sample of your tumor and run tests (often called molecular or genetic tumor testing) to try to match the most effective treatment for your cancer. You should ask your doctor about whether such testing is appropriate for you.
What is immunotherapy?
Immunotherapies are treatments that boost a person’s own immune system to fight cancer. In recent years, immunotherapies have become a potential breakthrough in the treatment of several types of cancer, including lung cancer.
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Reprinted with permission from Free to Breathe, freetobreathe.org.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, March/April 2016.
How Walking a Labyrinth Helped Me to Heal after Cancer
by Robin B. Dilley, PhD
As a breast cancer survivor, I found the end of treatment to be absolutely terrifying. I did not experience the relief I assumed would come after completing my final chemotherapy session. What I got instead were tears – and they weren’t exactly tears of joy. It was like all of the pent-up fear, anger, and emotional turmoil, which I had pushed aside while I was focusing on surviving, suddenly gushed out. Actively fighting cancer through chemotherapy and radiation had given me a sense of control. But when I was no longer solely focused on fighting, I realized I still felt helpless.
I needed something to help me cope with the emotions I was experiencing in the wake of cancer. It just so happened that as my treatment ended, a beautiful labyrinth was permanently installed in downtown Phoenix, AZ, near where I live. If you’re unfamiliar, a labyrinth is a complex series of winding paths, similar to a maze. However, a labyrinth is different from a maze in that it is one singular path to follow, rather than a puzzle to be solved. Labyrinths have been around for over 4,000 years, but they are being rediscovered and used in many ways today – walking meditation is one of them.
I made a commitment during my first year post-treatment to walk the labyrinth one day each week. As I made my reflective walk each week, I began to let go of the angst and fear I had been holding on to since my cancer diagnosis. After a few weeks of walking, I soon realized that I was walking my way to a place of inner peace, acceptance, and resiliency. In some ways, cancer was no longer the enemy. My hatred for the illness had dissipated, and I had reached a place of neutrality. My walking meditations allowed me to work through the despair and helplessness I felt when I began the recovery phase of my cancer journey. My medical battle was completed, and through walking the carefully placed curves of the labyrinth, one singular path to the center and out again, I began to fully heal.
I soon realized that I was walking my way to a place of inner peace, acceptance, and resiliency.
How You Can Discover the Healing Power of the Labyrinth for Yourself
As a cancer survivor, you have likely also experienced the maze of cancer treatment – full of dead ends and confusing and conflicting treatment protocols. You, too, can use labyrinths as a path to healing after cancer, or during any part of your cancer journey. If you are unable to walk comfortably or steadily, don’t fret. It is possible to “walk” a labyrinth with your fingers using a hand-held replica or a mobile app.
Unlike a maze, which can be stressful to solve, labyrinths bring peace, reflection, and healing. You just have to put one foot in front of the other and stay the course; the path is already laid out for you. At times you may feel a little disoriented or lost, but keep going with the confidence that moving forward will take you exactly where you need to be.
When you stand at the entrance of your labyrinth – whether it’s a physical one or virtual – begin your meditation with these three simple words: release, receive, return. Your walk to the center will be filled with the release of fears, worries, hurts, and concerns. When you arrive at the center, it may be helpful to envision it as a beautiful garden overflowing with everything you need to heal. Imagine picking yourself some blooms of hope, courage, bravery, energy, and health.
Once you’ve collected what you need, begin your return – one bend at a time – the same way you entered. When you reach the end, I hope you will have received the renewal you need – to return to treatment, to life, to the world – restored as the wonderful human being you are. I wish you well on your journey, and I wish you joy in your heart.
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Dr. Robin Dilley is a private-practice psychologist and the author of In a Moment’s Notice: A Psychologist’s Journey with Breast Cancer. To learn more about Dr. Dilley, visit her website, PsychotherapyUnlimited.com.
Labyrinths are finding their way to medical facilities, colleges, schools, and prisons, as their meditative uses are becoming more recognized. You can also find them in parks and churches. To locate one in your area, go to LabyrinthLocator.com.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, March/April 2016.
Gifts Closed the Distance
by Linda Slusser
When my long-distance best friend was diagnosed with cancer, I had to find a way to support her from afar.
Even over the phone, I could tell from her voice that my best friend of 58 years was about to share bad news. But I wasn’t prepared for her matter-of-fact announcement: “I have breast cancer.”
Marilyn would be facing a lumpectomy, followed by three weeks of daily radiation. How could I support her when I couldn’t be there by her side?
I decided to create a morale-boosting kit and have it delivered to Marilyn’s house. Her first reaction to the mysterious box went something like this: “You said you were sending a box in the mail, but I didn’t expect it to be so big! Each wrapped package and gift bag has a note dictating when I can open it. NOT FAIR!”
Yet, as the weeks of treatment proceeded, Marilyn looked forward to the little surprises I had lined up for her. She felt they sparked her curiosity and cheered her during a bleak period.
As the weeks of treatment proceeded, Marilyn looked forward to the little surprises I had lined up for her.
My kit consisted of items chosen especially for Marilyn. In addition to the directions for opening I had taped to the outside, a colorful note was tucked inside each gift to let her know she was in my thoughts.
Marilyn’s top picks among the kit’s morale boosters? “Most useful was probably the radiation cream because it was the most practical,” she says. “Probably the one I enjoyed the most was the fleece blanket. I use it every night when I sit on my living room sofa or lie down to read a book.”
Marilyn’s cancer journey is not over. But even when I can’t stand beside my best friend, I can still wrap her in a warm fleece hug.
Gift 1: Open the night before your
Inside: A burgundy fleece throw
The note: This throw is to wrap you in warm, healing thoughts.
Think of it as a plush hug.
Gift 2: Open before your first post-surgery appointment.
Inside: A tote bag with a cute sketch of her much-beloved breed,
an old English sheepdog
The note: Your tote bag, with an old English to make you laugh,
can hold all you need for appointments.
Gift 3: Open the day of your first
appointment with the oncologist.
Inside: A notebook, pen, and hand sanitizer
The note: Put these in your tote bag to record your questions and the doctor’s information and to keep the germs away.
Gift 4: Open before the first radiation treatment.
Inside: Radiation cream
The note: This cream got lots of great reviews. I hope it relieves any discomfort to your skin.
Gift 5: Open during week one of
Inside: Lip balm and mints in a variety of flavors
The note: These are to add to your tote bag for a quick,
Gift 6: Open during week two of
Inside: Socks with a dog’s face on the cuffs and
a book of pet-themed humor
The note: These are to make you smile – some funny stories
and some cozy socks.
Gift 7: Open during week three of
Inside: A container filled with an assortment of candy,
including her favorite – Tootsie Rolls
The note: These are for when you need a sugar boost.
Gift 8: Open after the last radiation
Inside: A key ring with beads and a pair of feet
The note: This is to remind you to keep your feet on the ground
and stay strong.
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Linda Slusser lives in Wellington, OH.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, September/October 2016.
Wings for Life
Resources for Medical Air Travel
For cancer survivors, distant travel is sometimes necessary to reach a cancer center or hospital for treatment or a second opinion that is not available in their local communities. Various air transport organizations provide free or reduced-cost flights to assist people who need help. The earlier you make your need known, the more likely you are to get help. The following is a partial listing of organizations that provide or coordinate flights for cancer survivors and their families.
Air Care Alliance is a nationwide league of humanitarian flying organizations whose volunteer pilots are dedicated to community service. It provides a central listing of free national and regional air transportation services provided by volunteer pilots and charitable aviation groups who perform public benefit flying for healthcare, patient transport, and other missions of public service. Visit AirCareAlliance.org to find an organization near you or to complete an online form. If you need further assistance, contact email@example.com or call (888) 260-9707.
Air Charity Network is a national network of regional charitable aviation organizations that provides access for people in need seeking free air transportation to specialized healthcare facilities. To locate the Air Charity Network organization that serves your area, call (877) 621-7177 or click on one of the regional links at AirCharityNetwork.org/contact-us. You will automatically be directed to the nearest available resource.
Cancer Financial Assistance Coalition is a coalition of organizations helping cancer survivors manage their financial challenges. Its website includes a section on transportation assistance listed by cancer type or by regional organizations according to zip code. Visit CancerFAC.org for links.
Children’s Flight of Hope provides free air transportation to and from medical treatment for seriously ill and injured children. These flights are provided through paid commercial airline tickets for the child and one companion, or through private charter flights. Children’s Flight of Hope contacts the commercial airlines and airport security to make the flight logistics as seamless as possible. On private flights, a Family Flight Liaison offers nonmedical support to the family and the pilot as needed. Submit an online request or call the mission request line at (919) 460-4334. For further information, call (919) 466-8593 or visit ChildrensFlightOfHope.org.
Corporate Angel Network arranges free travel, using the empty seats on corporate jets, for people with cancer, bone marrow donors, and bone marrow recipients who are ambulatory and not in need of medical support while traveling to or from an approved cancer treatment center. Eligibility is not based on financial need, and recipients may travel as often as necessary. If seats are available, you may bring an adult companion; children can travel with two adults. Call (914) 328-1313 or contact info&corpangelnetwork.org to register within three weeks of a specific appointment. For more information, visit CorpAngelNetwork.org.
Footprints in the Sky provides free flights to medical facilities throughout the U.S., using mainly donated charter and corporate jets, for people without the financial capability and resources to facilitate air travel. To fill out flight request forms, or for more information, visit FootprintsFlights.org or call (303) 799-0461.
Miracle Flights flies low-income children who are struggling with serious illness to specialized medical treatment centers or for second opinions from experts and specialists across the U.S. Qualifying families can receive travel assistance for the child and up to two parents or legal guardians. For more information, call (800) 359-1711 or visit MiracleFlights.org.
National Patient Travel Center provides information about all forms of charitable, long-distance, medically-related transportation and provides referrals to appropriate sources of help in the national charitable medical transportation network. For more information, visit PatientTravel.org. To request assistance, call the National Patient Travel Helpline at (800) 296-1217.
Patient AirLift Services is a network of volunteer pilots that provides free medical flights and air transportation services to qualifying people in need. Apply for assistance online by filling out a request form at PALServices.org, or calling (888) 818-1231. For more information, contact info@PALServices.org.
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Contact each organization to obtain specific eligibility requirements. In addition, check with your local cancer treatment center, hospital, or cancer support organizations, as well as commercial airlines, for information about obtaining transportation assistance for cancer survivors and their families. This listing was compiled by Coping’s editors and may not include all air transportation providers or coordinators.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, September/October 2016.
Learning to Love My Body
and Live Out Loud
by Morgan Thompson
Scared. Confused. Hurt. Ashamed. When I was diagnosed with Hodgkin lymphoma at just 26 years old, I was overwhelmed with so many different emotions, but the feeling of shame kept washing over me. I naively believed that cancer was something that happened to “other” people. It had never touched my life in a personal way, and I assumed that if I did the right things (exercise and eat a healthy diet) — it never would.
So when my doctor looked me in my eyes and told me I had cancer, I immediately burst into tears. I not only felt terrified, but I also felt embarrassed that now I was branded with a scarlet “C.” Although it’s unclear what causes Hodgkin lymphoma, I blamed myself. I blamed my body. Suddenly, I was different from everyone I knew and thrust into this world of disease – I was now the cancer patient.
After I started sharing the news with friends, I was asked if I would move from my New York City apartment back home to Charlotte, North Carolina, to be closer to my family for chemo treatment. The thought actually hadn’t occurred to me. My life, my job, my friends were all in New York. As scared as I was, I couldn’t let cancer take control of my life, and moving home would mean that I let cancer win – and that wasn’t an option.
My decision to take control was a turning point for me. I realized that my embarrassment had morphed into determination, and instead of hating my body, I learned to love it. I learned to be grateful for the fact that I could get up every day and put one foot in front of the other. Instead of referring to myself as a cancer patient, I started to refer to myself as a survivor.
I decided to share my experiences with other survivors and prove that you can live – even thrive – with cancer. So I started a blog called Beating Cancer While Staying Fabulous. The name kind of says it all. My blog became a way for me to document my experience and show everyone that cancer can be a part of your life – but it doesn’t have to be your entire life. I started to live out loud with the intention of making a difference.
My blog also allowed me to connect with Hodgkin lymphoma survivors all over the world – especially other young adults. Although my family and friends were super supportive, I needed to connect with others who were walking the same journey. Other young adults who knew what it was like to sit in a chemo infusion center and see no one younger than 60. Who knew how it felt to see friends get pregnant while worrying that treatment could make you infertile. Who knew what it was like to be mistaken for a visitor, and see the shock and sadness on a nurse’s or doctor’s face when they realize that you are the patient. I finally had friends who had been there and done that, and who made me feel like I could get through this.
Although Hodgkin lymphoma is highly curable and most people achieve remission, my journey wasn’t easy. After countless chemo regimens, a bone marrow transplant, and numerous clinical trials, I finally achieved remission. I reached the finish line in a race I had been running for years, and it was a true celebration. But life didn’t begin with remission, because during my journey, I didn’t let cancer hold me back. Throughout treatment, I made a conscious decision to keep living. I continued to flourish in my career, I got married to my amazing husband, and I learned to cherish the moments that truly matter in life.
Here’s the thing – cancer doesn’t care how old you are, how much money you make, or how good of a person you are. Cancer can happen to anyone. But it doesn’t have to be the end of your story. You have the power to move your life in any direction you dream.
No one’s life is perfect, but it’s the courage you show when the life that you have is not the one you had planned that will get you through the battle.
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Morgan Thompson is a marketing professional, TV host, pop culture aficionado, and cancer survivor. Born in New York, NY, and raised in Charlotte, NC, Morgan has a winning combo of southern charm and New York sass. She has held various marketing positions at Parenting, CosmoGIRL!, Redbook, Seventeen, and Cosmopolitan. After Morgan was diagnosed with Hodgkin lymphoma, she launched her blog Beating Cancer While Staying Fabulous (beatingcancerwhilestayingfabulous.blogspot.com) to share her experience with other young adults fighting cancer. Throughout her six-year battle with the disease, she got married, traveled, continued to work, and never lost her trademark smile. Connect with Morgan on Twitter @morgangthompson or Instagram @morganthompson04.
Spirituality & Survivorship
Finding Your Way after a Diagnosis of Cancer
by Rev. Jill Bowden, BCC, and Melissa Stewart, LCSW-R
Surviving cancer – what does that mean?
From a physical and medical perspective, it means to continue to exist without signs or symptoms of the illness that threatened one’s life. Perhaps it means being “in remission,” or “cancer-free.” But once cancer has invaded body, mind, and spirit, the impact lingers in the emotional and spiritual parts of a person well beyond the conclusion of treatment. For many, the experience leaves them forever changed.
We, as human beings, continually review and re-assess our values, beliefs, and priorities over the course of our lifetimes. It’s part of the personal evolution and growth that happens as we age, or as our life circumstances change. Unfortunately, many of us tend to only reevaluate our lives when we’re confronted with unpleasant or unwelcome challenges, like cancer.
A cancer diagnosis almost certainly intensifies this life review and reassessment process. A new sense of urgency may accelerate the decision to set in motion concrete plans for what were once far-off dreams – moving to be closer to family, taking a long-anticipated vacation, or finally starting a personally meaningful project, such as writing a memoir. It may lead to a reordering of priorities, to retiring from a career, or to pursuing new avenues of knowledge. It may serve as a stimulus for participating in enriching activities like mindfulness meditation, yoga, or spending more time with the people we love.
Welcome or not, a cancer diagnosis presents an opportunity to construct a totally new system of thought, a new framework on which to build our lives.
Welcome or not, a cancer diagnosis presents an opportunity to construct a totally new system of thought, a new framework on which to build our lives. Many people who have lived through cancer find that, even after treatment ends, they are troubled by the same seemingly simple two-word question: “Now what?”
For Debra Jarvis, a cancer survivor and oncology chaplain at the Seattle Cancer Care Alliance, that question is a big one. In her book It’s Not About the Hair: And Other Certainties of Life & Cancer, she writes, “This is not just a question of activity, but of becoming. You have gotten a reprieve, another chance to look at life with different eyes. Maybe you have awakened to something. The challenge is to stay awake. You can’t go back to your old way of being.”
Cancer is often described as a wake-up call. Interestingly, people tend to describe spiritual experiences as being wide awake – to life, nature, the universe, the great beyond, or simply our own being. Call it spiritual awakening, if you will.
What is it that inspires in each unique being a feeling of interconnectedness, of belonging to both the macrocosmic universe and the microcosm of human emotion, of com- passion for the suffering of others? Where does one find “at-one-ment,” or the presence of the sacred?
A unique experience of illness, of the potential for a shortened lifespan, of the fear of losing the uniquely essential “self” to the ravages of disease can inspire a sense of purpose or calling that sticks with us for the rest of our lives. It can be a gateway to helping others, to building deeper and more meaningful relationships, and to having a life that is inspiring to others.
Ultimately, and even if it is found nowhere else (whether in congregation with others or in communion with a divine being), a sense of authentic connection with one’s self usually brings about inner harmony and peace of mind. The awareness that comes with truly understanding oneself leads to experiencing ever-deepening significance in life. Spending time with friends and loved ones, being surrounded by nature, observing the world with compassion and wonder, experiencing the transcendent (or that which is beyond one’s own understanding) may put life in balanced perspective.
The soul-deep connection to all that is life can be experienced through an appreciation for art, the beauty of music, a deep admiration for the natural world, or an experience that inspires awe, reverence, or profound gratitude. Many spiritual practices could be used to achieve a state of peace or spiritual connection: prayer, meditation, mindfulness, movement, worship, or simply being of service to others. Whatever the method you choose, spiritual awakening is obtained by being fully aware, in the present moment, and doing that which is unique and joyful in your own mind and heart, to your own spirit.
Spirituality vs. Religion: What’s the Difference?
Spirituality is a universal aspect of human experience that is often most appreciated through a sense of connection or relatedness with the essence of life and others. Religion, when connected to an organized faith tradition, may be central to or part of one’s spiritual expression. The two (spirituality and religion) are often thought of interchangeably. However, while they are interconnected, they remain distinct.
Religion is often extrinsic, meaning it comes from the outside of a person. Religion typically has a system of prescribed customs and practices that are expressed by a community of like-minded persons. Spirituality, on the other hand, is intrinsic or on the inside. Spirituality is inherent in everyone and is a part of one’s unique and essential nature.
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The Reverend Jill Bowden is director of Chaplaincy Services at Memorial Sloan Kettering Cancer Center in New York, NY. A board-certified chaplain, she came to ministry with 40 years healthcare experience as a respiratory therapist and a healthcare administrator. Melissa Stewart is an ordained interfaith minister and a senior clinical social worker, providing psychoeducation, practical guidance, counseling, and emotional support to people with cancer and their families, at Memorial Sloan Kettering.
You Can Quit Smoking … for Good
by Vance Rabius, PhD, Diane Beneventi, PhD, and Paul Cinciripini, PhD
“I know I need to quit smoking,
For many smokers, a cancer diagnosis becomes a catalyst for giving up tobacco. For some, it’s because of pressure from family, friends, or their doctors. Others may feel ashamed that they continue to smoke after their diagnosis and hope quitting will relieve them of this shame burden. However, most people underestimate how difficult it is to quit and falsely attribute their failure to do so to a personal weakness. Hence the “but” in the statement above.
It is certainly common knowledge that smoking is bad for you, but the nature of addiction and the unique challenges involved with tobacco cessation are less publicized. Therefore, people who are trying to quit smoking often don’t know what to anticipate when seeking help. Most have made several quit attempts on their own, and usually they assume their numerous attempts are evidence of failure. What most fail to realize is that each quit attempt is an opportunity to learn what has worked and what hasn’t. Therefore, each attempt, instead of being a failure to quit, is simply another step toward reaching their goal of quitting smoking for good.
On average, people will make more than six quit-smoking attempts before achieving a longer period of smoking cessation. It may even take as many as 30 quit-smoking attempts over a lifetime to achieve cessation success. This is particularly true for people attempting tobacco cessation on their own, without medical assistance. Tobacco-cessation counseling and pharmacological interventions greatly improve your chances of success on any one quit attempt, especially when used together. Here’s how they work:
The thought of giving up a familiar coping strategy, like smoking, when faced with the stress of a cancer diagnosis may seem impossible. Yet people also have very powerful and personal reasons for wanting to quit. Some want to do everything they can to remain healthy and available for their loved ones. Others are motivated by the knowledge that quitting smoking can improve cancer treatment outcomes. A counselor can support you in quitting by helping you keep your reasons for quitting in focus.
Dr. Diane Beneventi
Tobacco-cessation counselors can also use behavioral strategies to help you identify the patterns that support your smoking and find alternative behaviors to use as substitutes. By strategically altering your behavior, you can break the patterns that lead to smoking, therefore, making smoking less automatic. In other words, a counselor can help you break the “habit” of smoking. Trained smoking-cessation counselors can also help you find new coping strategies (such as mindfulness exercises, deep breathing techniques, and other relaxation practices) to use instead of smoking.
The use of quit-smoking medications significantly improves the likelihood that any quit attempt will be successful. For example, smoking-cessation medications varenicline and bupropion have both been shown to increase cessation rates. Nicotine replacement therapies, while available over the counter, are often underutilized. Many people are hesitant to use them because they believe they are dangerous. While it’s true that nicotine, the addictive element in cigarettes, is a carcinogen, nicotine replacement therapies are safe and do not cause cancer.
Dr. Paul Cinciripini
One thing many people don’t know about nicotine replacement therapies is that their effectiveness is greatly increased when they are used in combination and for longer periods of time. For example, the use of a patch and a lozenge is generally more effective than the use of either alone. Because of a lack of accurate information about how to use these medications, many people mistakenly conclude that they don’t work for them, when in fact they likely will work if used correctly. It’s best to ask your doctor or another knowledgeable medical professional to help you choose the best tobacco-cessation method for you.
Anyone who is thinking about making a change in the way they use tobacco should reach out for help. It is never too late to quit.
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Dr. Vance Rabius is an instructor in the Department of Behavioral Science at The University of Texas MD Anderson Cancer Center in Houston, TX, and the research director for the hospital’s Tobacco Treatment Program. Dr. Diane Beneventi, a licensed psychologist of 20 years, is the supervising psychologist for MD Anderson’s Tobacco Treatment Program. Dr. Paul Cinciripini is a professor, chair of the Department of Behavioral Science, and director of the Tobacco Treatment Program at MD Anderson.
Living Well with a Diagnosis of MPN
from People Who’ve Been There
The journey through a diagnosis of a myeloproliferative neoplasm is different for each person, and there is no road map that will work for everyone. Different people need different things. Whether you are the person diagnosed with an MPN or a caregiver, we hope these ten tips that have been shared by others living with MPN will help you along the way.
1 Learn as much as you can about your diagnosis and treatment
Be an information seeker. Read about MPN. But be careful about the Internet. If you search for MPN information online, be sure to check the date the information was published, stay with credible organizations that update their sites frequently, and, most important, talk with your healthcare team and ask questions if there is something you don’t understand.
2 Find a specialist in the treatment of MPN.
Since it is a rare disease, you should see a specialist in the treatment of MPN. Talk with your doctor about clinical trials, and if one might be a treatment option for you.
3 Actively work with your healthcare team.
Depending on your age, your type of MPN, your symptoms, and the stage of your disease, your doctor may recommend a variety of treatments. Once you and your healthcare team have agreed on a treatment plan, be sure to follow it. Living with MPN takes a team approach, especially when it comes to your medical care. Be sure to report any side effects or changes quickly.
Living with a myeloproliferative neoplasm takes a team approach, especially when it comes to your medical care.
Eating a healthy diet can provide much-needed energy and nutrients to your body while you are coping with MPN.
4 Find others in a similar situation.
People with MPN can feel isolated. Loss of hope, loneliness, and worry about the future are some of the social and emotional challenges of living with MPN. Connect with others who can understand what you are going through via the Internet or a local support group.
5 Accept help when it is offered.
Coping with day-to-day tasks when you have an MPN can be hard. Don’t be afraid to ask others for the specific kind of help you want and need. Give your friends and family an opportunity to feel good by accepting their help. Use an online scheduler (such as LotsaHelpingHands.com) to help you get the kind of help you need when you need it.
6 Learn to manage your stress.
To manage stress, you can meditate, do yoga or tai chi, listen to music, visit with a friend, or take a walk. Set aside a portion of time every day to practice your stress management techniques. Even a short time can make a big difference.
7 Eat a healthy diet.
Besides its many health benefits, such as providing much-needed energy and nutrients to your body, maintaining a balanced diet is something you can control.
8 Get regular exercise.
Regular exercise can give you an emotional uplift, boost your energy, and reduce stress. Finding something you like to do and setting reasonable goals will help you make exercise a part of everyday living. At times when you experience fatigue, a little physical activity can help you feel energized.
9 Don’t sweat the small stuff – focus on what is important to you.
Identify the sources of frustrations in your daily life. Focus on the positive aspects of your life by keeping a personal journal or forming a new habit or hobby. Direct your energy toward activities that improve your quality of life.
10 Live the best possible life every day.
An MPN diagnosis should not put your life on hold. Set goals, build genuine connections, make it a priority to do something that makes you feel good every day. Accept that some days will be better than others but that doesn’t mean you can’t enjoy some small moments every day.
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Want to hear from someone who understands what you’re going through? Visit CancerSupportCommunity.org/myeloproliferative-neoplasms to watch videos of people sharing their experience of living well with an MPN diagnosis.
Excerpted with permission from Frankly Speaking About Cancer: 10 Tips to Living Well With Myeloproliferative Neoplasms (MPN) © Cancer Support Community. For more information about the Cancer Support Community, visit CancerSupportCommunity.org or call (888)793-9355.
Life Is about Choices
I Chose … Live
How I Learned to Cope When Faced with the
Stress of Cancer
by Mike Coy, RFC, CPBA
I’ve been asked many times by friends and family if I ever wanted to just give up when I was battling cancer. The answer is no. I had a six-month-old grandson, and I wanted to be able to take him to the park. I wanted to be able to play catch with him and watch him grow up. No, giving up wasn’t an option for me. However, I do understand why someone would quit.
It is hard to explain to someone who has not gone through cancer why some people fight (sometimes to the death) and why some people give up (sometimes immediately) – why some win and some lose in the battle. The pain associated with cancer could make anyone want to give up, and that’s why it’s so important to find a reason to live and to hold onto that reason for dear life. Cancer destroys your whole body, and you have to keep your mind strong because if that goes, everything goes.
My reason to keep fighting was my faith that God had more in mind for me to accomplish, as well as my desire to see my grandsons grow up. I had faith in my doctors and believed that they knew what steps to take and what treatments would get me well. I knew I had to have a positive attitude because of what I read about stress. For me, it was all about focusing on how to stop thinking about how stressed I was and remember how blessed I was instead.
Sitting out on my balcony in Chattanooga, TN, watching it snow, watching the Tennessee River flow below me, seeing the kids play and lovers walk hand in hand meant so much to me during some really tough times. But my tough times were physical. I was not going to allow them to be mental too.
Even if you have cancer, cancer doesn’t have you.
Life is about choices – decisions we must make every hour of every day. In some cases, it’s all about culture change, which is not easy to do. But in many cases, it’s the only thing to do. I had to figure out why there was so much stress in my life. I had to figure out where my stress was coming from. Then I had to figure out what to do about it.
I can think back on a day when everything was going south – a tough day at work, an appointment that did not work out the way I expected it to work out, and then going home and taking it out on my (then) wife.
But the point I am trying to make is that you need to find what is causing the stress in your life and figure out what you are going to do to fix it. It might be holding your grandbaby in your arms. It might be stopping at Dairy Queen one afternoon and picking up your favorite ice cream. It might be spending some time alone and thanking God for all your blessings. I know that works for me. Try it. It just might work for you too.
Finding the cause and taking steps toward relief are both important factors in stress management and can greatly aid in the fight against cancer.
For anyone facing the trials and tribulations of this world, try to stop focusing on how lousy life can be and remember how blessed each and every one of us truly is. As I said, life is about choices – decisions we make that can be good for us or maybe not so good for us. And if I can reach out to just one person with my words, then all of this has been worth it.
Today is all we’ve got. Yesterday is gone, and tomorrow is never promised. The canvas we paint can be a blessing or a curse.
I hope you value your life and the people in it enough to get checked regularly and remain healthy. Stop to embrace this opportunity we call life. Remember to thank the loved ones who get you through the tough times. Enjoy the good times. Remember that, even if you have cancer, cancer doesn’t have you. And, when life throws you a curveball, my prayer is that you’ll knock it out of the park and proudly proclaim, “I chose … live.”
♦ ♦ ♦ ♦ ♦
Mike Coy is a throat cancer survivor, public speaker, author, and healthcare reform expert. Learn more about Mike at IChoseLive.com.
Excerpted with permission from I Chose … Live, Fedd Books, 2015.
Hope for the Future
Fertility-Preservation Options for Cancer Survivors
by Leslie Ayensu Appiah, MD
My partner and I were married a year ago and have been trying to have a child. I haven’t had a menstrual cycle in several years, and I wanted to make sure everything was fine. I’m not sure if you have my records, but I was treated for Ewing sarcoma when I was seventeen.
This is an opening statement I often hear in my practice as an obstetrician and gynecologist. Woven through those sentences are undertones of hope and an almost imperceptible amount of apprehension. Most women know that not having menstrual cycles is not the norm and that it may be a sign of infertility; however, in the busyness of life, they push it to the back of their minds.
Over the last few decades, breakthroughs in science and medicine have improved cancer survival rates. The focus has now appropriately shifted to quality of life. The ability to have children and build a family is an important quality of life indicator for many survivors. Fertility preservation improves the chances of having children after cancer treatment; therefore, it is an important – yet sometimes overlooked – aspect of cancer care.
When to Talk about Fertility
A cancer diagnosis can be overwhelming. It can be difficult to “hear” or process discussions about how your diagnosis may affect your future fertility right after hearing the words “you have cancer.” This is why cancer survivors should have a separate conversation with a reproductive specialist after their initial discussion with the oncologist. Fertility-preservation counseling should occur within days of your initial cancer diagnosis so that fertility-preservation options can be implemented in a timely fashion.
The best time to implement fertility preservation techniques is before you begin cancer treatment.
Know Your Options
The best time to implement fertility preservation techniques is before you begin cancer treatment, as this is when you have the most options available and sperm and egg quality are at their best.
Standard fertility preservation options include egg, embryo, and sperm freezing. Testicular and ovarian tissue freezing are investigational options for survivors at high risk of infertility who are not candidates for standard therapies or who cannot delay cancer treatment to pursue those options. Several pregnancies worldwide have been achieved from ovarian tissue freezing, therefore making it a very viable option.
Many survivors express concern that pursuing fertility preservation will delay their cancer treatment. However, the two weeks required for women to freeze eggs and embryos is not prohibitive in most cancer types, particularly as newer technologies have been developed to quick-start the process. For men, sperm banking only takes a few days to coordinate and poses no delay. Similarly, ovarian and testicular tissue freezing require no delay.
For those survivors who cannot pursue fertility preservation prior to cancer treatment, options remain available. Survivors at high risk of infertility who have undergone a cycle of chemotherapy may still freeze testicular or ovarian tissue. Additionally, recent studies have shown that temporary suppression of ovarian function can improve pregnancy success rates in women with certain types of breast cancer.
Once Cancer Treatment Ends
Monitoring reproductive function after cancer treatment is an important aspect of survivorship. Regular menses do not predict fertility; therefore, medical evaluation is needed in survivors at risk for fertility loss due to cancer treatment. Routine follow-up with a reproductive specialist can help identify whether you are at risk and help you develop a long-term fertility plan.
There is currently no gold standard for monitoring fertility after treatment; however, a combination of blood work and ultrasounds may be the best course. For those survivors who have diminished reproductive function, implementing fertility preservation techniques after cancer therapy may be warranted.
Not every cancer survivor wants to have children. However, family building can be a rewarding aspect of survivorship for those who desire it. Moreover, regardless of their parental aspirations, cancer survivors experience less regret and greater quality of life when they talk to their doctors about their fertility preservation options, even if none are pursued.
Cancer can do many things, but we can’t allow it to shatter hope. Through a multi-disciplinary team approach, most cancer survivors can hold on to the very real hope of becoming parents after cancer treatment.
♦ ♦ ♦ ♦ ♦
Dr. Leslie Ayensu Appiah is a board-certified obstetrician and gynecologist with specialty training in pediatric and adolescent gynecology, as well as expertise in fertility preservation. She is an associate professor in the Department of Obstetrics and Gynecology and the director of Oncofertility and Pediatric and Adolescent Gynecology at the University of Kentucky College of Medicine in Lexington, KY.
Exercise and Cancer
What have we learned the past 20 years?
by Claudio Battaglini, PhD, FACSM, and Erik Hanson, PhD, CSCS
Since the first studies examining the effects of exercise in cancer survivors began to be published in the mid-80s, the interest in this intriguing area of research has grown exponentially. Because exercise is non-invasive, effective, and can be done by cancer survivors in the comfort and convenience of their own homes, the medical community has started to give more attention to the use of exercise as a complementary intervention in cancer rehabilitation. The key benefits of exercise during and after cancer treatment include the alleviation of certain cancer treatment-related side effects, a reduced risk for cancer recurrence, and improvements in overall functionality, health, and longevity of cancer survivors.
With the field of exercise oncology now entering its third decade, what have we learned during the past two decades of investigating the role of exercise in cancer survivorship? Many excellent scientific reviews on the topic, focusing on traditional exercise interventions with at least one objective measurement of fitness, have been published in the last few years. All of them show evidence that exercise provides many benefits to cancer survivors. Let’s take a closer look.
Overall Study Characteristics
♦ From the mid-80s to 1999: Most studies had low participant enrollment, the exercise interventions were only aerobic-based training programs, and most studies were conducted in people undergoing active treatment.
♦ From early 2000 to the mid-2000s: Larger sample sizes with different modes of exercise, including resistance training, began to be explored, and about half of the studies were conducted in people undergoing active treatment, with the other half including cancer survivors who had finished treatment.
♦ From the mid-2000s to today: A greater proportion of studies had improved methodological designs, with approximately 70 percent of the studies being randomized clinical trials in a supervised setting. Other types of cancers besides breast and prostate cancer were increasingly studied, and the studies focused on evaluating specific outcomes, for example body composition, immune responses, and exercise adherence.
Throughout the years, the most noticeable effects of exercise training were improvements in fatigue and depression.
Overall Study Results
♦ Throughout the years, the most noticeable effects of exercise training were improvements in fatigue and depression. Modest but clinically relevant increases have also been observed for cardiorespiratory capacity, strength, and lean body mass, as well as decreases in body fat percentage.
♦ For trials that examined the independent effects of strength training, significant and consistent gains in overall strength have been documented.
♦ Minimal adverse events due to exercise have been reported. When adverse events were reported, lightheadedness, low blood pressure, nausea, and weakness during exercise were the most common.
Dr. Erik Hanson
Based on all of the exercise oncology studies to date, regular exercise appears to promote many benefits that outweigh the potential adverse events for cancer survivors who are able to safely engage in regular physical activity during and after the completion of cancer treatments. Additional evidence is also available on the importance of being physically active in reducing the risk of cancer recurrence.
It is therefore recommended, according to guidelines set forth by the American College of Sports Medicine, that cancer survivors should engage in at least 150 minutes of moderate intensity exercise or 75 minutes of vigorous intensity exercise per week. This would equal to around 30 minutes of comfortably paced walking five times a week or about 25 minutes of faster paced walking three times a week.
Consult your doctor before beginning any type of exercise, even one that you participated in regularly prior to your cancer diagnosis. For those survivors with immune dysfunction, severe fatigue, or other co-morbidities, it is even more imperative that you consult with your doctor before you begin your exercise program.
Cancer survivors should include both aerobic and strength training as part of their exercise routines, as these modes of exercise promote specific benefits that can help survivors improve their overall stamina, functionality, physical and mental health, and quality of life. Still, there is no evidence that one type of exercise is superior to another, so you should choose activities that you find enjoyable and that you’ll be more likely to stick with. Consistency is the key to reaping the benefits of exercise during and after cancer treatment.
What you are waiting for? Check with your doctor and start your exercise training today. You can also consult with an exercise science specialist to help you design a personalized exercise routine that is both effective and safe for cancer survivors.
♦ ♦ ♦ ♦ ♦
Dr. Claudio Battaglini is a professor in the Department of Exercise and Sport Science at the University of North Carolina at Chapel Hill, full member of the Cancer Prevention and Control program at the UNC Lineberger Comprehensive Cancer Center, director of the UNC Get REAL & HEEL Breast Cancer Exercise Program, codirector of the UNC Exercise Oncology Research Laboratory, and an American College of Sports Medicine fellow. Dr. Erik Hanson is a Kulynych/Story Fellow assistant professor in the Department of Exercise and Sport Science at the University of North Carolina at Chapel Hill, as well as a certified strength and conditioning specialist and codirector of the UNC Exercise Oncology Research Laboratory, along with Dr. Battaglini.
What You Need to Know Right Now
by Gabriela Höhn, PhD
I’m just not myself since I started treatment. I’m fuzzy, not as sharp, and everything seems to take me longer. I forget where I put things, and can’t remember people’s names or conversations I just had with them. I’m usually really organized, and now I can’t find where I put my papers or remember whether I paid all my bills. And I’m so distractible. I can’t seem to focus on any one thing for more than a few minutes. And forget multitasking. I’m lucky if I can just get one thing done without stopping midway and then forgetting where I am. I try to hide it, but family and friends are starting to notice – even my coworkers. Am I losing my mind?
No, but you may be experiencing chemo brain. Here’s what you need to know if you find that your cognitive functioning just isn’t the same since you started treatment.
What is chemo brain?
Chemo brain is a side effect of cancer and cancer treatment that many survivors experience to varying degrees. Typical symptoms are short-term memory problems, difficulties with attention and concentration, slowed mental processing, and difficulties with multitasking.
What do doctors call chemo brain?
Chemo brain is an informal name, of course. Cancer-associated cognitive disorder is the technical term.
What causes chemo brain?
Despite earlier assumptions about chemotherapy being the main culprit, new research suggests multiple causes. There likely is a complex interaction among the cancer itself, cancer treatments (chemotherapy, radiation, anesthesia, and endocrine therapy, for example), and the body’s biological stress response.
Around 60 to 80 percent of people experience cognitive problems during and just after active cancer treatment.
How long does chemo brain last?
Around 60 to 80 percent of people experience cognitive problems during and just after active cancer treatment. Most see their symptoms improve within the first year or two after treatment. However, 20 to 30 percent of sur- vivors still experience cognitive problems several years after treatment ends, and some long-term studies show problems up to 20 years later.
Is chemo brain preventable?
We don’t know. Some treatments may have less impact on cognitive functioning, so there may be some flexibility in terms of choosing treatment options, but for now, there’s no firm answer.
Is chemo brain curable?
Again, it’s too early to say for sure. The research is still very new, and we’re only just beginning to understand the mechanisms involved. However, we can effectively treat other conditions related to treatment for cancer. For example, depression and anxiety can contribute to memory problems, so antidepressants, anti-anxiety medications, and supportive psychotherapy can be very helpful for some people. Furthermore, chronic pain and sleep problems can also impair cognitive functioning, and effective treatment options are available for these as well.
Will I ever get back to normal?
In the cancer community, we talk a lot about “the new normal.” Some cancer survivors do return to how they were before diagnosis and treatment. Many, however, may have to adapt to ongoing challenges. Learning good ways to cope effectively with cognitive changes may make all the difference in your quality of life.
Why should I know about chemo brain if we don’t
have all the answers yet?
I like to think knowledge is power. Having information about possible effects of treatment on thinking, memory, and attention can normalize symptoms and make you feel less anxious. And knowing that others often experience cognitive changes too can help you feel less alone.
How do I get help for
If symptoms of chemo brain interfere with your everyday functioning during or after treatment, talk to your doctor about a referral. A neuropsychologist can conduct a specialized evaluation of your cognitive functioning and make specific recommendations to help you manage chemo brain symptoms. These may include behavioral strategies, environmental accommodations, cognitive training, EEG neurofeedback, medications such as stimulants, or referrals to a psychologist, social worker, or support group.
Chemo Brain Coping Strategies to Try Right Now
Keep it simple.
Get organized, in whatever way works for you. Put your medical bills in a shoebox if filing is too difficult. Toss your keys in a bowl by the front door when you come home. Let others host the big holiday celebrations or manage new projects at work for now. Let go of perfection; “good enough” is just fine most of the time, and especially right now.
Write it down.
Make lists for things you need to do, and check them off when done. Don’t rely on your usually excellent memory for grocery trips, work tasks, or medication schedules. Ask others to write down directions or appointments, or to send you information by email or text so you’ll have a record of it to look back on. Keep a notebook handy, or use your smartphone, to keep track of appointments and to-do lists.
Do one thing at a time.
Don’t try to multitask. Stay focused on the task in front of you and ask others not to interrupt. Don’t overschedule or try to do too much. Give yourself lots of extra time between appointments to avoid stress and fatigue.
Assume that you will make some mistakes throughout the day. Double-check appointment dates and times in your calendar. Make sure the stove really is off. Before exiting, see if you left your purse, your cell phone, or the book you’re reading on the bus or in the doctor’s office.
Ask for help.
Let family, friends, or supportive coworkers know that you’re having some problems. Loved ones often want to help, so let them.
♦ ♦ ♦ ♦ ♦
Dr. Gabriela Höhn, a cancer survivor, is a licensed clinical psychologist and neuropsychologist in New York, NY, with personal and professional interests in cognitive functioning and coping in cancer survivors. She developed the Chemobrain Workshop series at New York’s Mount Sinai Beth Israel Medical Center. To learn more about Dr. Höhn or to request a specialized Chemo Brain Checklist, visit GabrielaHohn.com.
For Women with Gynecologic Cancer
5 Tips for Taking Charge of Your Healthcare
by Stephanie V. Blank, MD, FACOG
A cancer diagnosis is naturally unsettling, evoking a wide range of emotions. Because talking about gynecologic organs is still practically taboo for so many women, a below-the-belt cancer diagnosis can be even more distressing. Studies consistently demonstrate that many women are reluctant to even ask their doctor questions about gynecologic cancer testing, risk factors, and genetic predisposition, much less discuss potential symptoms.
It is important to remember that your diagnosis doesn’t define you. Being true to yourself is essential for a gynecologic survivor at any point in her journey. Moreover, I cannot emphasize enough how crucial it is to be your own advocate.
Here are some tips that I hope will help you achieve that goal.
1 Be informed.
Learn all you can about your own disease, including the pathology of it, the various treatment options available for you (with expected outcomes and potential side effects), next steps, and any clinical trials for which you might be a candidate.
2 Find a gynecologic oncologist, and make sure you are comfortable with your medical team.
Seeing the correct specialist or gynecologic oncologist results in better outcomes. Get a second opinion to ensure your own comfort level. Too often, women worry about offending a doctor, and that should never be the case. Most doctors will expect you to seek confirmation of a diagnosis or treatment plan. And again, the more informed you are, the better. As you go through treatment, being fully comfortable with your medical team is essential.
Too often, women worry about offending a doctor,
and that should never be the case.
3 Ask questions.
Open communication with your doctor is essential at all times. It is important to plan every visit to your doctor, even writing questions down so you don’t forget anything. If you experience new symptoms or an adverse reaction to treatment, make sure you share this information. Doctors want you to feel well and will be pleased to hear you say you’re feeling fine. But, if you aren’t, be honest with your doctor about how you feel.
It is also a good practice to take someone with you to appointments. A cancer diagnosis can be overwhelming in itself. As you learn about your specific disease, treatment plan, and next steps, the process can be even more overwhelming, and it can be tough to absorb it all.
4 Build a support team.
A cancer diagnosis is unquestionably emotional, and having a support team is essential. Family, friends, a religious community – whatever works best for you and makes you the most comfortable – surround yourself with a support team that will help you stay positive. There are numerous resources available online, and if group settings suit you, there are support groups with people who will listen to you, answer questions, and provide encouragement. Your medical team should be able to provide information on support services available for survivors and families. In addition, many survivors turn to advocacy and support as part of their own healing process, and these women are willing and able to provide support for others going through a similar experience.
5 Focus on wellness.
As you go through treatment, talk to your doctor about how you can maintain a healthy lifestyle. While intense physical activity may not be possible during treatment, many survivors find that returning to such activities as walking or yoga is supremely beneficial. Some survivors even choose to train for a cancer support run or walk (such as the upcoming National Race to End Women’s Cancer), combining wellness and advocacy. For many women, this type of endeavor can be tremendously empowering.
Coping with gynecologic cancer is an occasion when you need to give yourself time for you – start that art class or cooking class you always wanted to take. Be creative. Celebrate life, and remain positive.
♦ ♦ ♦ ♦ ♦
Dr. Stephanie Blank is a professor in the Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, at the New York University School of Medicine in New York, NY, where she serves as Gynecologic Oncology fellowship director, as well as associate division director of Gynecologic Oncology. Dr. Blank is a full member of the Society of Gynecologic Oncologists and the American Society of Clinical Oncology, as well as a gynecologic oncologist at the NYU Clinical Cancer Center and a principal investigator in numerous cancer research studies.
The National Race to End Women’s Cancer is a run/walk held by the Foundation for Women’s Cancer to raise awareness and research funding to defeat gynecologic cancers. You can learn more about the Foundation at FoundationForWomensCancer.org. For more on the 2016 National Race to End Women’s Cancer, to be held November 6 in Washington, DC, visit EndWomensCancer.org.
Advice from a Teenage Cancer Survivor
by Carly Freels
Nearly 16,000 U.S. children and adolescents under the age of 20 are diagnosed with cancer each year. I am one of them. I was diagnosed with Hodgkin lymphoma when I was 17 years old.
While nothing can fully prepare a person for cancer to enter their life, I want to share a few things that helped my family and me cope with my diagnosis.
Friendly Advice for Friends and Family
If you are a family member or close friend of someone recently diagnosed with cancer, the best advice I can give you is to show them sympathy, but don’t treat them differently. Most of the time, you won’t have been in a situation that allows you to say, “I know what you’re going through.” That is more than OK.
While I was going through treatment, I didn’t need my friends and family to be able to relate to my experience. What I needed was people who simply were there for me. People who could say, “I know this is hard, and it may seem unfair, but I am here for you no matter what you need.”
The fact that my friends and family were still able to joke with me, laugh with me, and participate in everyday events alongside me gave me a sense of normalcy in an unsure situation.
Once I knew who would face this storm with me, I was comfortable in seeking help and encouragement when I needed it. The fact that my friends and family were still able to joke with me, laugh with me, and participate in everyday events alongside me gave me a sense of normalcy in an unsure situation. Despite my diagnosis, I still longed to have that routine high school life I was used to. By not treating me differently just because I had cancer, my friends and family helped me to hang on to a somewhat normal life.
On Redefining Beauty
One of the biggest obstacles I had to mentally overcome was the inevitable fact that I would lose my hair. For anyone undergoing chemotherapy, this is a tough pill to swallow, but it’s especially so for a girl in the prime of her high school years.
I started out wearing a wig that almost perfectly matched my once long, flowing brunette hair. However, as time passed, hiding behind a wig just didn’t seem right. My cancer was nothing to be ashamed of. To help me keep my hair loss in perspective, I decided to cover my mirror with verses and inspirational quotes about inner beauty and confidence. That’s when I began to see my shiny scalp, not as the uncomfortable elephant in the room, but as a sign of my strength and overcoming.
After only a few weeks, I let go of the wig’s security and found safety in knowing I was fighting a good fight. That decision is still to this day one of the best I have ever made. Letting go of the world’s definition of beauty and redefining it for myself has changed my perspective on so much, even now that I am finished with treatment and my hair has grown back in.
No one ever expects cancer to enter their life. When it does, it becomes a learning process for everyone involved. Have patience with the friends who have trouble relaying their good intentions, treasure the ones who never leave your side, and find the beauty in every victory.
♦ ♦ ♦ ♦ ♦
Carly Freels is the author of When Faith > Fear…, an autobiography that touches on how to keep a positive outlook after a cancer diagnosis. To learn more about Carly or to order a copy of her book, visit whenfaithfear.com.
Take Control of Chemotherapy-Induced Peripheral Neuropathy
by Cindy Tofthagen, PhD, ARNP, AOCNP, FAANP, FAAN
Peripheral neuropathy is a common, but often unanticipated, side effect of chemotherapy. Symptoms include numbness and tingling that begin in the fingertips or toes and that may move upward into the hands and feet, and then the arms and legs as the neuropathy worsens. Peripheral neuropathy can also affect your balance and fine motor skills, making it difficult to carry out certain daily activities like buttoning a shirt, hitting the right keys on your computer or cellphone, or driving a car.
Talk to your doctor if you are experiencing symptoms of neuropathy. You’ll want to tell him or her how much of your hands or feet are affected, what specific symptoms you’re having, and how the symptoms are affecting your daily activities. If you are currently being treated with chemotherapy, your doctor may need to adjust the dose or try a different chemotherapy drug altogether. For most people who develop chemotherapy-induced neuropathy, symptoms will lessen or resolve over time.
Controlling neuropathy pain usually requires medications that are different from those used for other types of pain.
Your doctor may refer you to a neurologist (a doctor who specializes in the treatment of diseases affecting the nervous system) to rule out other diseases or conditions that may be causing your neuropathy. A neurologist can also help you manage your symptoms.
For some people, chemotherapy-induced peripheral neuropathy can cause a great deal of pain. Controlling neuropathy pain usually requires medications that are different from those used for other types of pain. Two main kinds of drugs are used to treat neuropathy pain: anti-seizure medications and antidepressants. These medicines must be taken on a regular basis, instead of as-needed like other pain relievers, and it may take some time before you notice results. Also, not every medicine works for everyone, and different people require different dosages to get pain relief. Your doctor can help determine what type of medicine and dosage you need to control your neuropathic pain.
If neuropathy is affecting your ability to perform normal activities, seek help as soon as possible so that you can get your symptoms under control and get back to living your life. Several different types of healthcare providers can help you manage your neuropathy:
♦ A physiatrist (a physician who specializes in cancer rehabilitation) can help get you functioning at your best.
♦ A physical therapist can help you manage neuropathy by recommending specific exercises to improve your muscle strength and balance.
♦ An occupational therapist can work with you to help you maintain your independence, adjust to physical limitations, and get back to doing your usual activities as quickly as possible.
♦ A podiatrist can help you take good care of your feet, recommend good footwear, and fit you for special inserts that will make walking more comfortable.
♦ Case managers, registered nurses, and social workers can help you identify resources within your community to meet your specific needs and facilitate communication among you, your healthcare team, and insurance company.
♦ Mental health professionals and support groups can help you cope emotionally with neuropathy.
Always check with your doctor before taking any vitamins, nutritional supplements, or over-the-counter medicine for neuropathy because these may interfere with your cancer treatments or may have other potentially harmful effects. Be leery of anyone who tells you they have a “cure” for neuropathy. Numerous unproven treatments are claimed to cure or improve neuropathy; however, these may cost you a lot of money and not deliver the results they promise.
While there is no magic bullet for neuropathy, there is a lot you can do to control neuropathy symptoms. You can start with talking to your doctor about your chemotherapy-induced peripheral neuropathy symptoms and then being persistent until you get the help you need.
♦ ♦ ♦ ♦ ♦
Dr. Cindy Tofthagen is an associate professor, oncology nurse practitioner, and director of the oncology nurse practitioner concentration at the University of South Florida in Tampa, FL. She is the director of CARE Tampa Bay, a member of the medical advisory board for the Neuropathy Support Network, and contributor to the Oncology Nursing Society’s Putting Evidence into Practice guidelines for peripheral neuropathy.
The Neuropathy Support Network is a nonprofit organization that helps people with any form of neuropathy. Visit NeuropathySupportNetwork.org to learn more about neuropathy or to find a support group in your area.
How Are You, Really?
Talking with Your Doctor about the Side Effects of Cancer Treatment
by Jolyn Taylor, MD, MPH, and Lois Ramondetta, MD
How are you? This is often the first thing a doctor says when you arrive for an appointment. While it’s a simple question, it’s one that can be difficult to answer. After all, most people battling cancer are likely experiencing a multitude of symptoms and side effects, with some more troubling than others. Should you report all of your symptoms? Only some of them? Which ones?
On top of that, the medical profession doesn’t always make it easy to report symptoms and side effects. While most providers spend years improving surgical techniques, and countless hours keeping up with the latest medical research, an inconsistent amount of time is allotted to training oncologists on how to identify and improve disease- and treatment-related symptoms and side effects.
In addition, when a person reports a symptom or a side effect to his or her doctor, these reports are commonly referred to as “complaints” in medical documentation. Though this isn’t meant to be a negative thing, the language used can give off that connotation, causing some people to be hesitant in reporting even their more troubling symptoms because they don’t want to be seen as weak or “complaining.”
Dr. Lois Ramondetta
However, reporting symptoms and side effects is not a sign of weakness. Think about it. Does admitting that you have trouble getting a good night’s sleep mean you are “giving in” to cancer? Does acknowledging that your pain is too great to handle without intervention mean that the disease is winning? Of course not. There is no winning or losing against the symptoms and side effects that accompany a disease like cancer. There is only managing and treating them.
Also, reporting your symptoms and side effects is not “complaining.” And it doesn’t create an unnecessary burden for your doctor. In fact, the opposite is true. In order for your doctor to address the symptoms and side effects that are diminishing your quality of life, he or she needs to know what matters most to you. Explaining exactly how the side effects of cancer treatment are affecting your life is never complaining. Rather, it’s building a stronger bridge of communication between you and your doctor. Maintaining an open dialog with your doctor is essential to achieving an optimal quality of life during and after cancer treatment.
So the next time your doctor asks how you are, take a moment to answer honestly and completely. After all, what your doctor likely wants to know is “How are you, really?”
The Importance of Palliative Care in Cancer Treatment
Palliative care (sometimes called supportive care) is a clinical service that focuses on relieving the symptoms caused by cancer, as well as the side effects of cancer treatment.
In 2012, the American Society of Clinical Oncology released a provisional clinical opinion on the timing and use of palliative care services for people with cancer. The report recommended that palliative care be combined with standard oncologic practice early in the disease course in order to improve quality of life for cancer survivors. There is quite a bit of data to back up this recommendation. For example, among gynecologic oncology patients, collaboration with palliative care services has been shown to decrease the symptom burden by half within one day of consultation.
♦ ♦ ♦ ♦ ♦
Dr. Jolyn Taylor completed her medical doctorate at New York University School of Medicine and her residency in Obstetrics and Gynecology at Weill Cornell Medical College. She is now a fellow in Gynecologic Oncology at The University of Texas MD Anderson Cancer Center, in Houston, TX. Dr. Lois Ramondetta is a professor of Gynecologic Oncology and Reproductive Medicine at MD Anderson and is co-leader of the initiative targeting cancers associated with HPV in MD Anderson’s Moon Shots Program. She is also a member of NRG Oncology’s Cervix Committee, as well as the Cervical Task Force of the National Cancer Institute’s Gynecologic Cancer Steering Committee.
The Garden That Heals
by Jenny Peterson
“Don’t let cancer define you, Jenny. You are more than your diagnosis.”
This was the advice from my doctor when she gave me the news that I had breast cancer, the disease that had killed my mother. It was Friday, May 11, 2012 – I don’t need to look up the date because it’s seared into my memory, like it is for most people with a cancer diagnosis. I thought, “That’s easy for you to say. You don’t have breast cancer.”
Then I met my oncologist, who said, “Not everything in your world can be about breast cancer.” So clearly I had a theme going here, and it made me think beyond my feelings of fear and panic. Who am I, aside from being a person with breast cancer? Who was I before this diagnosis, and had she changed?
The answer is that I am many things. I am Jenny. I am a gardener. I am a writer. I am a mother. I am a fiancée, a sister, a friend. I am a designer. I am a child of God. I am optimistic, sarcastically funny, and I am a good baker. There’s no reason I can’t still be all of those things even after my diagnosis, right?
Yet I struggled with my feelings of competency, I questioned my physical and mental abilities, and I yearned for the days when the world around me felt secure and recognizable. If you’ve had a cancer diagnosis, you’ve probably felt the same. Your world has changed forever, and you don’t know how you’ll navigate all of the changes. Your body doesn’t move and feel the same, and it certainly doesn’t look the same if you’ve had any amount of surgery. You may question your attractiveness and your vitality, your inner and outer strength.
“Don’t let cancer define
So how did I not let cancer define me? Not knowing anything better, I simply kept doing what I knew to do. And one of those things was gardening. Plants, and the act of growing and caring for them, have been a central part of my personal and professional life for a long time. I’m a freelance garden writer and author as well as a garden designer, and I’ve gardened on a 150-square-foot garden as well as an entire acre. I love houseplants, flowers, succulents, and herbs. So I gardened.
For a long time, my gardening didn’t resemble the type of gardening I used to do. I was weak and struggled with some range of motion issues in my left arm where I’d had surgery. I felt a little depressed and lacked energy, and I was sensitive to heat. I was told to not lift more than 10 pounds and to not perform repetitive, jarring motions. That kind of left out shoveling, wheelbarrowing, and plant hauling. What to do, what to do.
I was determined to find some place where I could thrive and experience joy again.
I’m not going to lie – I had many days when I did not feel like gardening. But I decided to change my approach and focus on small, doable tasks. I could water my front porch plants and tend to my houseplants without any problem, so that’s what I did most days. And little by little, my relationship with plants and my garden became the thing that turned me around – body, mind and spirit. No, it wasn’t easy. Nothing about cancer and cancer treatment is easy. But it was my reality, and I was determined to find some place where I could thrive and experience joy again.
After I finished treatment, I thought, “Wow, thank God I’m done with that. Let’s get life back to normal now.” Unwittingly, I was viewing my cancer treatment as a mere inconvenience, a short disruption in my life. It actually disrupted my Universe, and changed it forever. My expectation to begin living my life as though nothing had happened was rudely and swiftly challenged.
The first year after treatment consisted largely of what I had read it might – feeling tired, getting my hair back, dealing with foggy “chemo brain,” rebuilding my strength. It was the second year, though, that threw me for a cosmic loop. My hormones finally crashed after being thrust into chemo-induced medical menopause, my brain seemed even foggier, my emotions were on a roller coaster ride from Hell, and I saw no end in sight. This wasn’t what I’d signed up for! The doctor who called me with my diagnosis said that I would feel better in a year. One year, not two and beyond.
It was during this time that I began working – with the blessing of my oncologist – with a wonderful and gifted holistic practitioner, Dr. Robin Mayfield. Robin and I had been friends for several years, with both of us writing garden blogs and belonging to an Austin area garden blogging group. In fact, it’s ironic that I’m mentioning Robin here, because her blog is about gardening in the Texas heat and harsh environment, and it’s called “Getting Grounded: It’s not for sissies.”
Cancer treatment and its recovery are, indeed, not for sissies. It kicked the snot out of me, and it continued to surprise me that it took so long to recover. But Robin told me something that really resonated with me: every day, before you do anything else, get your cup of coffee or tea, and go out into the garden. Don’t do anything. Just check on your roses, appreciate the flowers you just planted, observe how many tomatoes are on the vine, greet your chickens. Get grounded. Feel the ground beneath your feet. It reminds you of who you are and where you came from.
For months, this was my ritual, and I treated it like my homework. Get grounded. This simple yet powerful ritual has a way of whispering in your ear, “Hey, just breathe. One day at a time. It’s going to be okay.”
But what, exactly, is getting “grounded” and how does it work? To answer that, think first about what it means to be “ungrounded.” That’s where you’re in a headspace of feeling angry, anxious, bitter, upset, distracted, unhappy. All those feelings are normal, but they also keep you from being in the here and now. They pull your mind away in a million different directions, and after a while you forget what it means to be present.
♦ Go outside. Get barefoot if possible.
♦ Walk on the soil or grass, not pavement.
♦ Feel the ground under your feet.
♦ Breathe in deeply.
♦ Be aware of your surroundings.
♦ Engage your senses (smell, touch, sight, hearing).
So get grounded. Get back to the basics. Take a few minutes for yourself, reminding yourself of what is real right now. Don’t treat cancer and your treatment as merely an inconvenience, because you will be squandering away an opportunity to see a deeper meaning. Will you always feel like doing this? Of course not. But when you least feel like doing something is perhaps when it just may be the most beneficial to you.
♦ ♦ ♦ ♦ ♦
Jenny Peterson is a breast cancer survivor, landscape designer, writer, and speaker. She has written for several lifestyle, home, and garden websites and publications. Learn more about Jenny at JPetersonGardenDesign.com.
Excerpted from The Cancer Survivor’s Garden Companion, St. Lynn’s Press, 2016.
The Sound of Healing
A Look at Music Therapy for Cancer Survivors
by Lisa M. Gallagher, MA, MT-BC
The treatments for cancer are often long, uncomfortable, tiring, and boring. But they don’t necessarily have to be. There are things that can help you get through it. Music therapy is one of them.
Music therapy is a complementary medicine technique that involves engaging in music through the guidance of a supportive board-certified music therapist. A music therapist can guide you in using music during medical procedures, while waiting for appointments, while preparing for surgery, during recovery from cancer treatment, and as a means of coping with the physical and emotional side effects of cancer and its treatment. Music therapy has been shown to lower stress levels, improve sleep, promote relaxation, and decrease pain.
When I was undergoing radiation treatments for breast cancer, I struggled with finding the right music to use during my treatments. I didn’t want silence in the room; I wanted to listen to music that would help me relax and would decrease my anxiety so I could lie still for the entire treatment. As a music therapist, I know that a person’s favorite music is usually a great go-to choice. However, I also realized that listening to my favorite songs could potentially cause me to start disliking them, as they might then remind me of radiation.
Music therapy has been shown to lower stress levels, improve sleep, promote relaxation, and decrease pain.
After speaking with a fellow music therapist, I decided to use music that I rarely listened to – country. And it worked. I even discovered a song that became the theme song for my cancer journey: “Stand,” by Rascal Flatts. A music therapist can also help you find the right music for your situation.
Engaging in music therapy practices like listening to music, making music, music-led imagery, and songwriting, to name a few, is beneficial in a variety of ways. Music therapy can help you manage side effects (like nausea), lower your anxiety, and ease cancer-related fears. It can also give you something positive to focus on during the treatment. Focusing on music sends positive energy to your brain, which can help block pain sensations that may also be trying to reach your brain.
We use music every day to help us relax. Music can help you decompress after a particularly stressful day. Or it can pump you up for an upcoming event, activity, or project. Listening to quiet music at night can help you fall asleep. Moreover, pairing calming music with relaxation techniques, such as deep breathing, imagery, or progressive muscle relaxation, can increase relaxation and improve your ability to fall asleep, and even stay asleep. Music can also be a means of communicating with friends and family. And it can give you the strength, hope, and courage you need to face each day.
Music therapy helped me get through one of the most difficult times of my life. Maybe it can help you as well. Talk with your doctor about integrating music therapy into your treatment plan.
♦ ♦ ♦ ♦ ♦
Lisa Gallagher is a board-certified music therapist and the research program manager for the Arts & Medicine Institute at Cleveland Clinic in Cleveland, OH. She is also a breast cancer survivor.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, July/August 2016.
Ken Griffey Sr. Talks Prostate Cancer
by Kaylene Chadwell and Laura Shipp
A prostate cancer survivor himself, the two-time World Series champion is speaking up about the disease and encouraging others to do the same.
For Major League Baseball fans, “Ken Griffey” is a household name. In the early 90s, Ken Griffey Sr. and Ken Griffey Jr. made history when they became the first father and son pair to play on the same MLB team at the same time. Further cementing their spot in the record books, as Seattle Mariners teammates, they became the only father-son duo to hit back-to-back home runs. The elder Griffey is a three-time MLB All Star outfielder who helped the Cincinnati Reds win two consecutive World Series titles. Griffey Jr. is a Major League Baseball Hall of Famer who also happens to be one of the most prolific home run hitters in the history of the sport.
However, baseball talent isn’t the only thing that runs in the family for the Griffeys. They also share a family history of prostate cancer. “I lost four uncles to prostate cancer,” Ken Sr. tells Coping magazine. “My mother insisted I take my risk seriously and get regular prostate cancer exams.”
Thus, when rising PSA levels led to a diagnosis of early-stage prostate cancer in the summer of 2006, Ken Sr. wasn’t exactly surprised. What did surprise him, however, was just how difficult it was for him to talk about his diagnosis.
“For a lot of men, it’s embarrassing to talk about.”
“Despite how much our family talked about prostate cancer,” Ken Sr. explains, “when it came to my own diagnosis, I was struck by how hard it was for me to speak up and tell my family what was really going on.”
Ken found it especially challenging to share the news with his oldest son, Ken Jr., as he didn’t want his diagnosis to become a distraction for his son on the field. At the time, the younger Griffey was playing center field for his dad’s former team – the Cincinnati Reds. On top of that, the Griffey children had just learned their mom was contending with her own diagnosis of colon cancer.
Cancer Can Spread,
It’s Important to Know What to Look For
If you are currently living with advanced prostate cancer, ask yourself these questions:
⇒ Are you having trouble doing regular activities?
⇒ Are you taking more medicine for pain or discomfort?
⇒ Are you living with aches, discomfort, or pain you can’t explain?
You may think these things are occurring because of your age, a busy day, or a simple change in routine. You also may think that over-the-counter or prescription pain medicine is the only solution to treat these symptoms.
But these aches, pains, and lifestyle changes could be a sign or symptom of your prostate cancer spreading to bone.
Speak up. Listen to what your body is telling you. And talk to your doctor about which treatment may be right for you.
“I’ll never forget the day I learned that Dad had prostate cancer. It was my mom who broke the news to me, because Dad was focused on being there for everyone else,” Ken Griffey Jr. shares in a press statement. “I know that it can be hard for men to talk about prostate cancer, because men want to be tough. My dad was trying to be strong for us – and over time, he realized it’s strong to speak up.”
Once the elder Griffey began to open up to friends about his diagnosis, he realized he wasn’t the only one who had difficulty talking about this below-the-belt men’s disease. “I had a couple friends that I had played golf with for years who had this cancer, and they had never said a word,” he reveals. “When they heard that I had prostate cancer, that’s when they finally spoke up about it.
“A lot of men don’t talk about prostate cancer, especially if they have it,” he goes on to say. “It’s hard for men to talk about incontinence, erectile dysfunction, and all those things because, for a lot of men, it’s embarrassing to talk about.”
In fact, according to a survey by the International Prostate Cancer Coalition, nearly 70 percent of men living with prostate cancer admitted to sometimes ignoring symptoms, rather than tell their doctor about them. In addition, one in five men said that talking about symptoms like pain makes them feel weak. And more than half said they feel their daily discomfort is just something they have to live with.
Now 10 years cancer-free after robotic prostatectomy, Ken Sr. is trying to change all that – and he’s once again teaming up with his son Ken Jr. to do it. This time, instead of racking up home runs, they’re encouraging men with prostate cancer to know the warning signs of advancing disease and speak up about their symptoms as part of Bayer’s Men Who Speak Up movement.
“I’m just trying to help men who have prostate cancer talk to their doctors,” says Ken Sr. “One of the most important things is that I get a chance to talk to a lot of people about prostate cancer. I can share what I went through, and then maybe they’re not afraid to talk to other people about it. That’s the biggest thing for me.”
♦ ♦ ♦ ♦ ♦
Men Who Speak Up is a nationwide movement to raise awareness about the signs and symptoms of advancing prostate cancer. Learn more at MenWhoSpeakUp.com.
The Role of Ritual in Celebration and Healing after Cancer
by Richard Dickens, MS, LCSW-R
Hearing three dreaded words – you have cancer – is the shared experience connecting all can- cer survivors. The myriad treatments, thoughts, and feelings that follow, however, are unique to each individual, changing often and giving meaning to the common metaphor of cancer as a roller-coaster.
Once this roller-coaster finally ends, and active treatment is finished, many survivors seek ways to celebrate the end of treatment and to acknowledge the strength they’ve found through family, friends, faith, and hope along the journey. Others look for ways to heal, emotionally and spiritually. They want to let go of the anger, fear, and loss of innocence that are holding them back from feeling whole again. One way to do each of these is to create a ritual that gives the experience meaning and reverence.
We participate in rituals all the time – holidays, birthdays, sports traditions, special handshakes. Some are done once in a lifetime (like baptism or bar/bat mitzvah). Others are repeated and passed down from generation to generation (breaking the wishbone at Thanksgiving, for example). People who are religious often have rituals or ceremonies to commemorate life transitions, from birth, to marriage, to death.
In his book The Bone Clocks, David Mitchell writes, “Hobbies are for pleasure, but rituals keep you going.” Cancer and all of its changes and uncertainties can stop us from dreaming, planning, and hoping. But invoking a ritual – whether it’s a one-time thing or repeated event – to commemorate the journey, or to simply let it go, can help you keep going.
Here are some examples of rituals you may find meaningful during your cancer journey:
Throw a celebration party commemorating the end of treatment. This could be a yearly event marking the date, or simply a one-time occurrence.
Read a favorite card, poem, or letter you received from a loved one during treatment.
People who’ve had a stem cell transplant often celebrate a second birthday each year on the anniversary of their transplant, marking a second chance at life.
Write a letter to someone who hurt you, maybe a long time ago, and drop it in a mailbox, even if you no longer have an address. Another option would be to write a letter to your cancer.
Place a candle on a boat and set it adrift on a river or lake. The candle can symbolize anything you want to let go of.
Place flowers at a site that holds negative memories for you, and leave your pain, anger, or sadness there with them.
I hope some of these ideas resonate with you and inspire you to create a ritual of your own. Be creative. It is your ritual, and you can do anything you want. You can invite anyone you want, or no one at all. What matters is that you find a way to celebrate where you are in your journey, or just let go of what has passed so you can move on and find meaning in the life you have now.
♦ ♦ ♦ ♦ ♦
Richard Dickens, a licensed clinical social worker, is the Men’s Cancers program director, as well as a clinical supervisor and the Blood Cancers program coordinator, at CancerCare. He also developed and is the project coordinator for CancerCare’s Mind-Body Project. Richard is a two-time non-Hodgkin lymphoma survivor of over 20 years.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, July/August 2016.
Holding on to Hope
by Clare Butt, RN, PhD
Hope. This one little word can hold great meaning, especially for cancer survivors. Though holding on to hope after a cancer diagnosis can sometimes be challenging, many survivors find their hope grows through the experience.
What is hope?
In her poem “Hope is the Thing with Feathers,” Emily Dickinson likens hope to a bird – a fitting image for how many cancer survivors experience hope. It’s easy to imagine the wings of a bird expanding to the left and to the right, flapping in the air, and adjusting to the variations in the wind to produce flight. In the same way, hope can help cancer survivors expand their viewpoint to find new meaning through illness and redefine what is important to them. The capacity of hope to endure is immense; thus, hope can be found in every circumstance, even cancer. However, holding on to hope is not always easy. Some days, it may feel like hope is gone. So how do you hold on to hope when times are tough?
Many people have gone before you; picture yourself among them, after treatment and doing well.
Look for meaning in something larger than yourself.
This could be connecting to nature, to your spirituality, or to a faith community. Things like watching a sunset, walking through the woods, or swimming in the ocean can help you to feel whole. Other meaningful experiences might include listening to music, spending time with a friend, or just doing anything that gives you joy. Being connected to something larger than yourself can foster hope.
Hope is the Thing
by Emily Dickinson
Hope is the thing with feathers
That perches in the soul,
And sings the tune without
And never stops at all,
And sweetest in the gale
And sore must be the storm
That could abash the little bird
That kept so many warm.
I’ve heard it in the chillest land
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
Many people have gone before you; picture yourself among them, after treatment and doing well. Visualization can be a great tool for enhancing hope. Where would you like to be a year from now? Five years from now? Are there significant events in the future you would like to be around for – your daughter’s wedding, your son’s graduation, the birth of your first grandchild? Visualize yourself at that event.
You have a right to know about your care. Don’t be afraid to ask the questions that can put your worries to rest. Uncertainty can be reduced by speaking up for yourself.
Seek out affirming relationships.
Family, friends, and pets can be a source of comfort to get you through hard times. Call that special person who will listen to you and sympathize with your feelings. Ask for help from that someone who you know won’t make excuses. Go out with a friend who agrees not to talk about anything medical. Let your beloved pet bring you the comfort of unconditional love.
Turn to your inner resources.
We all have more hope and strength inside than we might imagine. Be gentle with yourself. Celebrate the little things that bring you joy. What are you thankful for today? Is it a comfortable bed to sleep in, a good cup of coffee, warm slippers on your feet? Forget the mistakes you may have made, and celebrate the achievements instead. You’re still here, and you’re still you. Now that’s something to feel good about, hopeful even.
♦ ♦ ♦ ♦ ♦
Clare Butt is an oncology nurse who has worked with cancer survivors for over 15 years. She teaches nursing at Holy Family University in Philadelphia, PA.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, July/August 2016.
Physical Activity and Cancer
A case for exercising after your diagnosis
by Reid Hayward, PhD
When exercise was first suggested as an intervention for cancer survivors, many people, including some in the medical community, thought it wasn’t a viable option. “How can you ask someone with debilitating fatigue and severe treatment-related toxicities to exercise?” they would say. Many oncologists and other healthcare professionals believed not only that cancer survivors undergoing treatment shouldn’t exercise but also that the survivors themselves wouldn’t exercise during treatment, or for weeks or months after.
We now know this is not the case. Many research studies have demonstrated that exercise alleviates toxicities of the cardiovascular, pulmonary, muscular, nervous, and gastrointestinal systems. Others have shown that exercise reduces the suppression of blood cell production and results in favorable changes in body composition. Additionally, exercise improves functional capacity, reduces fatigue, and enhances overall quality of life.
Cancer survivors who exercise find themselves in a better mood, with more energy, better able to perform activities of daily living, feeling more rested, and better able to think and concentrate. The reasons for many of these improvements center around the fact that the benefits of regular exercise directly counteract the negative side effects of cancer and many of its treatments.
Heart damage is a serious complication of treatment for many cancer survivors. Aerobic exercise can provide a powerful boost to cardiovascular fitness. Exercise improves the pumping ability of the heart, increases blood volume, enhances the function of the blood vessels, and increases the number of capillaries. Both aerobic exercise and resistance exercise (or weight lifting) can also increase the amount of muscle in the heart.
Numerous studies show that physically active cancer survivors have a lower risk of cancer recurrence and improved survival compared with those who are inactive.
Significant improvements in cardiovascular fitness can be observed even in cancer survivors performing moderate-intensity exercise. Moreover, a number of studies clearly show that moderate-intensity aerobic training can significantly improve cardiac function, even in survivors diagnosed with heart failure. Additionally, although endurance and resistance training have no significant impact on blood pressure in individuals with normal blood pressure, they can lower blood pressure in those with hypertension.
Lung damage following cancer treatments is most often the result of lung inflammation or pulmonary fibrosis, but it can also accompany pulmonary edema. Aerobic and resistance exercise both can strengthen the muscles of respiration, or those that help you breathe in and out. This allows them to generate more force to better expand the lungs, which can then bring in more air with each breath. Exercise has also been shown to improve blood flow to the lungs and increase the effectiveness of gas transport throughout the body.
Cancer and cancer treatments both have been shown to decrease skeletal muscle mass. This can be the result of direct harm to the muscle or a consequence of cancer-related weight loss. A number of research studies show that low- to moderate-intensity resistance exercise leads to significant gains in lean body mass and muscular strength in cancer survivors. This is extremely beneficial for survivors who are experiencing symptoms of muscle loss, malnutrition, or wasting, as the loss of lean mass is associated with higher mortality rates in cancer survivors.
Heart damage is a serious complication of treatment for many cancer survivors. Aerobic exercise can provide a powerful boost to cardiovascular fitness.
Not only does exercise help you maintain muscle mass, but strengthening weakened muscles through exercise can also help your body use energy more efficiently. Lower-body resistance training has been correlated with an increase in the amount of time cancer survivors can walk before they become fatigued. This is because lower-body resistance training improves lower-body strength and endurance, which in turn has been linked to increases in aerobic capacity. Similarly, resistance training of the upper body can help cancer survivors in completing activities of daily living, such as pushing a lawnmower, picking up a basket of laundry, or putting away groceries.
In cancer survivors, exercise training programs have been shown to lessen the severity of peripheral neuropathy, reduce the symptoms of chemo brain, increase the number of oxygen-transporting red blood cells, enhance the function of the immune system, reduce nausea, increase appetite, and help survivors maintain a favorable body mass.
While an individual exercise program may not provide all the benefits mentioned above for every cancer survivor, particularly if they are currently undergoing treatment, exercise can help preserve the function of the heart, lungs, immune system, and skeletal muscles, protecting them from the functional declines that often happen during cancer treatment. Exercise programs can also increase cardiorespiratory fitness in cancer survivors, which is associated with a lower all-cause mortality risk. Moreover, numerous studies show that physically active cancer survivors have a lower risk of cancer recurrence and improved survival compared with those who are inactive.
Exercise training is one of the most underutilized tools to help cancer survivors cope with the negative side effects of cancer and cancer treatments. If you want to see the benefits of exercise for yourself, ask your doctor for a referral to an exercise specialist who has been trained to work with cancer survivors, and start your exercise training today.
♦ ♦ ♦ ♦ ♦
Dr. Reid Hayward is a professor of Exercise Science in the School of Sport and Exercise Science at the University of Northern Colorado, as well as the director of the University of Northern Colorado Cancer Rehabilitation Institute, in Greeley, CO. His research focuses on the effects of exercise on cancer- and treatment-related side effects.
Caring for Your Loved One with Lung Cancer
In recent years, there have been some exciting developments in treating lung cancer. But a diagnosis of lung cancer can still be overwhelming and leave feelings of uncertainty and anxiousness. There are important treatment decisions to make, emotional concerns to manage, and insurance and financial paperwork to organize, among other practical concerns. However, there are ways to cope through this journey as caregiver, and resources are available to benefit you and your loved one.
The impact of lung cancer can be felt in close relationships as the responsibility of providing care falls on your shoulders. As you navigate the peaks and valleys of helping a friend or family member cope with lung cancer, here are some tips to help you effectively care for your loved one and for yourself.
Avoid Information Overload
Upon hearing that someone close to you has been diagnosed with lung cancer, you may find yourself searching websites to learn more about the disease and treatment options. Looking at lung cancer statistics can leave you or your loved one feeling anxious or even depressed.
Remember that statistics are numbers that catalog thousands of individuals. They do not represent the specific outcome that your loved one will face. It is also important to remember that a survivor’s prognosis can change over the course of treatment, especially with the approval of new treatments or by enrolling in clinical trials. Talk with your healthcare team about the specific prognosis, treatment options, and managing side effects for your friend or family member.
Quick Tips for Lung Cancer Caregivers
Take a break and do
something that you enjoy.
♦ Know your limits. Don’t be afraid to say “no” to family and friends.
♦ Write down your thoughts and feelings.
♦ Seek the support of a professional counselor or social worker.
♦ Join a support group.
Be Aware of Stigmas
A lung cancer diagnosis can come with stigmas associated with the disease. As a caregiver and advocate, you may have to overcome prejudice or bias on three different levels.
♦ Society Someone who has never been exposed to cigarette smoke or tobacco products can be diagnosed with lung cancer. The public may automatically assume that a lung cancer diagnosis means the survivor has a history of smoking.
♦ Family The pressures of caring for someone with lung cancer may cause some family members to inadvertently make a loved one feel guilty about a cancer diagnosis, especially if it is a result of smoking. Since cancer impacts the entire family, consider talking with an oncology social worker to work through the mix of emotions that come with being a caregiver.
♦ Personal A cancer diagnosis can cause a person to reflect upon past choices to identify what could have led to the diagnosis. Your loved one may feel guilty and think the cancer is deserved. If you notice he or she is taking the blame for their lung cancer diagnosis, work with the health care team to provide appropriate support.
Take Care of Yourself
It is important to not get burnt out when caring for someone with lung cancer. Remember to take care of yourself as you strive to stay on top of tracking doctor’s appointments, treatment schedules, updating family and friends, as well as juggling your own life. As a caregiver, you should prepare yourself to experience highs and lows as part of the cancer journey.
Seek counseling from a professional oncology social worker, delegate caregiving responsibilities to friends and family, and spend some alone time to relax and recharge. Consider joining a support group. You may find it is helpful talking to other caregivers who are going through a similar situation.
♦ ♦ ♦ ♦ ♦
CancerCare offers free face-to-face, telephone, and online support groups led by professional oncology social workers. To learn more, call 800-813-4673.
Reprinted with permission from cancercare.org.
Finding Freedom in Forgiveness
by Mary Fisher Bornstein, LISW-S, and Betsy Kohn, MA, PC
We started studying the idea of forgiveness after watching a show on television in which the state of West Virginia caught a serial killer who had been killing women for 20 years. At the end of his trial, the judge offered the victims’ families an opportunity to speak to the killer. Several of them, in tremendous emotional pain, screamed at the man saying they hoped jail would be a life of hell for him.
The last person to speak was an elderly woman who had lost her daughter. In paraphrasing, she said this:
I forgive you for killing my precious daughter because now you have been caught and can’t hurt anyone else. You have run my life for the last 20 years, and now I am free. I can let go of the hatred that has consumed me, forgive you, and live in peace again.
We were struck by her calm presence, as it was in direct opposition to the all-encompassing hate and anger displayed by the other families. This got us thinking about the amazing power of forgiveness and the freedom that it can bring.
What is forgiveness?
When thinking about forgiveness, consider the following:
♦ Does it mean forgetting what has happened, does it mean reconciliation, or does it mean that you are weak and easily manipulated? No.
♦ Does it mean you have let go of resentment and anger, that you are able to be present in the moment, or that you are willing to find a new way of understanding a situation? Yes.
♦ At different times in your life you may choose to forgive yourself, someone else, or a power greater than yourself.
Forgiveness is a process. It is a choice you make each day, and maybe even each moment, throughout your life. When you don’t forgive, you can get stuck in a place that doesn’t allow you to move forward. For people on the cancer journey, forgiveness can become particularly important as people start to reflect on their lives.
How can I learn to practice
First, find a ritual or practice that gives you serenity – something like prayer, meditation, or yoga. Have patience; forgiveness takes time and courage. Ask for guidance from those you trust, and, if necessary, seek professional help. You may take a step backward on your journey to forgiveness, but if you’ve been incorporating forgiveness into your everyday life, you will not fall so far that you find yourself back at the beginning.
Be kind and gentle with yourself. Practicing forgiveness is worth the effort, as forgiveness can help you move toward a healthier, happier, freer life.
♦ ♦ ♦ ♦ ♦
Mary Fisher Bornstein and Betsy Kohn are counselors at The Gathering Place, a cancer support center in Northeast Ohio. For more information or to contact the authors, visit touchedbycancer.org.
Metastasis is a FOUR-LETTER Word
by Patricia Ohanian Lundstrom
You’re a survivor? How long?
This question continues to confuse me. I have no idea how to answer it. I usually say something like, “Well, I woke up this morning, so about five hours now.” People think this is a witty thing I say, but, in fact, it’s the closest to the truth I can get.
Four years ago, my bone scan confirmed that my breast cancer had spread to my right femur, my left hip, and all up and down my spine. Localized breast cancer is one thing, but an all-out body invasion automatically makes it stage IV. Two weeks earlier, before anyone had seen my bones, my tumor had been a stage II ball of fury in my left breast, and the word “cure” had been bandied about. They don’t use that word when you have stage IV.
But you play the cards you’re dealt, right? And you work your way toward the end. Although with stage IV, the end is a sort of swimmy thing, no longer easily defined. Stage IV means that surviving the original onslaught of cooties isn’t enough, you have to be on the lookout. Forever. It’s kind of unfair, that surviving cancer isn’t enough, that it’s not THE END. Stage IV means never having an end, or rather, having an open end.
So when you ask how long I’ve been a survivor, do I count from the moment of my diagnosis? From my last chemo treatment? From the last time I thought about dropping dead?
At any given moment, I am in the throes of survival, just like everyone else. And I look like everyone else. I have hair, boobs, and a significant spare tire, so I look as though I have survived the worst.
It’s kind of unfair, that surviving cancer isn’t enough,
that it’s not THE END. Stage IV means never having an end,
or rather, having an OPEN END.
And I have; I absolutely have survived the worst, so far, and in pretty good shape too. But I can’t help thinking of how much has changed on the inside, at a very real, physical level.
My body has been breached; my cells have been altered. I have been changed at a molecular level by a transformation not yet understood by science. Every three weeks when I was in treatment, in order to battle this attack, in order to save my life, my doctor mixed a combination of poisons – one of which, if it were to accidentally drop onto my skin, would very literally tear my flesh away – and poured approximately two cups of this caustic stew directly into my heart. For three days afterward, my pee was a deadly weapon – contact with my urine could have resulted in sterilization.
Survivor? I’m a gosh darn superhero! Once you get bitten by the spider, your insides are never the same.
And although I suspect battling insane villains is someone’s idea of a challenging storyline, I have yet to see any superheroes signing their children up for the new school year, grocery shopping, making work deadlines, filing the 3,000 pieces of paperwork it takes to run the house and fight a deadly disease, making meals, and kissing booboos. Doing all of this, which is real life, and then every three weeks, saying, “Yes, may I please have some more poison poured directly into my heart?” Survival barely scratches the surface of what cancer patients do every day.
So now that I’m three years out of treatment and life has come back to “normal,” can I claim to be a survivor? It just rubs me the wrong way; maybe because “survivor” has a past-tense connotation. I am surviving, present tense, now and forever more.
You’re a survivor? How long?
All the time.
♦ ♦ ♦ ♦ ♦
Patricia Lundstrom is an author, educator, mother, and wife who doesn’t want to talk about her cancer for the rest of her life but will do so if it teaches somebody something. She is currently writing a book, Cancer is Not the Boss of Me: A Girlfriend’s Guide to Having, Fighting, Living with and Laughing at Breast Cancer, to be published in the fall of 2016. Learn more at Facebook.com/CancerIsNotTheBossOfMe.
Creating a Cancer Legacy Project
How Having a Large Creative Goal Can Help You Heal
by Paulette Kouffman Sherman, PsyD
When I was diagnosed with breast cancer, I realized that my life might end up being shorter than I had originally thought. And it became the push I needed to accomplish my dream of leaving behind a legacy of books.
My intuition told me that I should write 22 books to inspire people to love more. I decided I wanted to self-publish in order to make it happen more quickly. And I did all this while working full time as a psychologist and life coach, undergoing chemo and radiation, and being a mom (of two kids under age six) and a committed wife.
Looking back, it seems kind of crazy. But having this passionate focus in my life – and knowing that my kids would have these books and that they might also help others – gave me joy and living energy.
As I finish book number 21 (out of 22) in my legacy project, I’ve begun reflecting on my experience. I’ve come to realize that having a large creative goal – or a legacy project – might help other cancer survivors too. Here are the top 15 benefits that I’ve discovered:
1. It gives you a focus that is bigger than your cancer. When you have cancer, it’s all you and others can think about. If you can create something meaningful that is “bigger” than your cancer, it will bring you positive energy to keep loving life.
2. Helping others makes you feel powerful and gives you a sense of purpose. I wrote a four-book series to help other cancer survivors get through the experience so they wouldn’t feel alone. Knowing that my experience could help someone else gave me a powerful sense of purpose.
3. The act of writing (or creating) itself is therapeutic. Research shows that cancer survivors benefit from writing about and reflecting on their experience.
If you can create something meaningful that is “bigger” than your cancer, it will bring you positive energy to keep loving life.
4. Having a long-term goal gives you hope that you’ll be around to complete it. If you’re compelled to see something through, it propels you into the future mentally and emotionally. It gives you hope that your body will follow.
5. It helps you see the meaning and lessons in suffering. Some spiritual seekers say Earth is a school where we learn through challenges. Cancer is undoubtedly a challenging experience. It is also a chance to work through karma, learn lessons about life and ourselves, and get clear on what we want our focus to be.
6. Art transforms us, others, and the experience. Art can shape our experience to make it lasting and valuable to others. It can even make pain beautiful if it speaks a truth or makes someone feel understood.
7. Leaving a legacy is a tangible way to still be here. We can leave our legacy creations behind indefinitely, and this is something that cannot easily be destroyed.
8. Passion is vitality. Doing what you love increases your life force.
Paulette displays a henna decoration on her bald head.
9. Telling your story is healing. Proponents of narrative therapy have shown that telling your story is healing. It helps you to master it, to gain a sense of agency, and to be the heroine (or hero) of your life story.
10. Having an audience or tribe helps you feel less alone. Having cancer can be an alienating experience. When you write a book, blog, create a YouTube video, or make art, you may attract an audience who supports and understands your experience and what you are trying to say. This can make you feel less alone.
11. It’s good to look back on your testament of your experience. Creating art helps you record your memories of your cancer experience so you can revisit the journey later, with a different perspective.
12. We most often create from our true self, or higher self. The British psychoanalyst Donald Winnicott spoke about the true self being most alive in our acts of creation. Through creating, we can express our true selves and our true feelings. We can explore our experience without having to please others and without fear of repercussion in the outer world.
13. Accomplishing a significant goal reminds us that anything is possible. If you can do something like write 22 books during cancer treatment and recovery, you begin to feel that anything is possible and there’s a lot more you can – and will – do.
14. It reminds you that you are not a victim. As a person with cancer, many things are stripped from you. You experience a lot of losses: your hair, your toenails, your eyebrows, your energy. It’s easy to feel like a helpless victim instead of the powerful creator you are. Creating a legacy project reminds you of this distinction.
15. It helps you to heal and create wholeness. Writing, painting, and most other creative acts help you to take pieces of something and make them into a new whole. It is an opportunity to heal your mind, emotions, and spirit, even if your body is still fighting cancer.
Some words of caution:
Do this for you. Don’t do it for outside support or results. Others may find it obsessive or silly for you to spend your energy and time on such a project while you are undergoing cancer treatment. They may feel like you are indulging a hobby or setting yourself up for unrealistic expectations.
Don’t feel like you have to get a publisher or make money through your project. Or even have loved ones read or see it. This is all too much pressure.
Do it because you want to. The universe can respond to it – or not. We all need to master becoming an audience of one, needing no applause. Approve of yourself and what’s healing to you. Over time, let’s hope, you will find your tribe.
♦ ♦ ♦ ♦ ♦
Dr. Paulette Kouffman Sherman is the author of The Cancer Path, My Quick Guide Through Breast Cancer, The Create Your Own Cancer Path Workbook, and 18 other books. Book #21, The Book of Sacred Baths: 52 Bathing Rituals to Revitalize Your Spirit will be published by Llewellyn Worldwide in August. She is a breast cancer survivor, psychologist, life coach, wife, and mother. You can learn more about Paulette and her books at TheCancerPath.com, SacredBathing.com, and ParachuteJumpPublishing.com.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, May/June 2016.
Tips for Preventing Infection during Chemotherapy
If you are receiving chemotherapy, you may be at risk for getting an infection. This risk is highest when your white blood cell count is at its lowest. Getting an infection can be a life-threatening complication of chemotherapy.
You are likely to be at risk for infection between 7 and 12 days after you have received each chemotherapy treatment – and possibly lasting up to one week – when your white blood cells are at their lowest numbers.
Here are some practical measures you can take to lower your risk of getting an infection.
Wash Your Hands
One of the best ways to keep yourself from getting sick is to keep your hands clean. You should also encourage friends and family members to keep their hands clean. You should wash your hands with soap and water at these times:
♦ Before, during, and after cooking food
♦ Before you eat
♦ After going to the bathroom
♦ After changing diapers or helping a child to use the bathroom
♦ After blowing your nose, coughing, or sneezing
♦ After touching your pet or cleaning up after your pet
♦ After touching trash
♦ Before and after treating a wound or caring for your catheter, port, or other access device.
Take Care of Your Mouth
Your cancer medication can reduce the number of infection-fighting cells in your blood for a short period, and your body’s ability to combat infection may be lowered during this time. Because of this, you are more likely to get an infection in the lining of your mouth. The most common of these infections is a fungal infection called thrush. Thrush usually appears as a white coating in the mouth and on the tongue.
There are times that the medicine you are taking may cause your gums to become sore and bleed. Your medicine may also cause your mouth to become very sore, causing small ulcers to form. This soreness is called mucositis, and it can be very painful.
Just as your medicine may affect the lining of the mouth, it can also have an impact on the glands that make your saliva. This can cause you to have dry mouth, which may make it hard for you to swallow food and may change the taste of the food you eat.
There are a number of things you can do to keep your mouth healthy:
♦ Brush your teeth and clean your dentures when you wake up, before you go to bed, and after every meal using a soft toothbrush.
♦ Get a new toothbrush every three months.
♦ Use the mouthwash your doctor or nurse recommends to avoid getting mouth sores. If you do develop mouth sores, speak to your doctor about whether to substitute mouthwash for salt- or plain-water mouth rinses, as these will cause less discomfort.
♦ Check with your doctor or nurse about flossing your teeth because your chemotherapy may increase the chances of your gums bleeding when you floss.
♦ Avoid using toothpicks.
♦ Try to stay away from things that may irritate your mouth: alcohol, tobacco, spicy food, garlic, onion, vinegar, crunchy foods, and acidic drinks (such as orange and grapefruit juice).
♦ Keep lips moist by using lip balm.
♦ Try to drink at least eight glasses of fluid a day.
♦ Check your mouth daily for redness, swelling, sores, white patches, or bleeding, and let your doctor or nurse know if any of these signs of infection are present.
♦ Check with your doctor or nurse before having any dental work done.
Know the Signs and Symptoms of Infection
Fever (this is sometimes the only
sign of an infection)
♦ Chills and sweats
♦ Change in cough or new cough
♦ Sore throat or new mouth sore
♦ Shortness of breath
♦ Nasal congestion
♦ Stiff neck
♦ Burning or pain with urination
♦ Unusual vaginal discharge or irritation
♦ Increased urination
♦ Redness, soreness, or swelling in any area, including surgical wounds and ports
♦ Pain in the abdomen or rectum
♦ New onset of pain
♦ Changes in skin, urination, or mental status
Protect Your Skin
The medicines that you take to treat your cancer may cause changes in your skin. These changes, like dry skin and irritation, can lead to openings in the skin where germs can enter and infection can set in. Making a few changes to your daily hygiene routine as soon as you begin chemotherapy, and throughout your treatment, can help to keep your skin healthy and lower your risk for infection:
♦ Bathe every day with warm water and mild soap.
♦ Avoid soaking in spas or hot tubs.
♦ Use a soft towel to gently wash your skin.
♦ Be sure to clean your feet, groin, underarms, and other sweaty areas well.
♦ After bathing, do not rub your skin with your towel. Instead, pat it dry.
♦ Do not share your bath towel with other family members.
♦ Use unscented lotion or moisturizing cream on your skin after it has dried.
While you are going through chemotherapy, you need to protect your skin from cuts and scrapes because these are
easy ways for germs to enter your body. If you follow a few simple steps, you can protect yourself from injury and infection:
♦ Use an electric razor instead of a blade when shaving to help prevent nicks.
♦ Be careful when handling sharp items.
♦ Use caution when exercising to avoid grazing or scraping your skin.
♦ Be careful when walking on wet or slippery surfaces to avoid falling and scraping your skin.
♦ Do not cut, tear, or bite your cuticles.
♦ Avoid getting manicures and pedicures.
♦ Do not squeeze or scratch pimples.
♦ Wear clothing that is appropriate for the type of activity you plan to do (for example, long sleeves and gloves when gardening to protect yourself from cuts and scrapes).
Watch Out for Fever!
You should take your temperature any time you feel warm, flushed, chilled, or not well. If you have a temperature of 100.4°F (38°C) or higher for more than one hour, or a one-time temperature of 101°F or higher, call your doctor immediately, even if it is the middle of the night. Do not wait until the office reopens before you call.
You should also:
♦ Find out from your doctor when your white blood cell count is likely to be at its lowest, since this is when you’re most at risk for infection.
♦ Keep a working thermometer in a convenient location and know how to use it.
♦ Keep your doctor’s phone numbers with you at all times. Make sure you know what number to call when their office is open and closed.
♦ If you have to go to the emergency room, it’s important that you tell the person checking you in that you are a cancer patient undergoing chemotherapy. If you have a fever, you might have an infection. This can be a life-threatening condition, and you should be seen in a short amount of time.
♦ ♦ ♦ ♦ ♦
For more tips on preventing infections during cancer treatment, visit PreventCancerInfections.org
Source: U.S. Centers for Disease Control, PreventCancerInfections.org
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, March/April 2016.
Easing the Pain of Cancer
How Mindfulness Can Help You Manage Cancer-Related Pain
by Emily Cox-Martin, PhD, and Diane Novy, PhD
Pain is a multidimensional experience. It can affect you both physically and emotionally. By the same token, pain can also be treated using more than one method. One strategy often used by clinical psychologists and other mental health providers to help cancer survivors manage pain is called mindfulness.
Mindfulness is the practice of being aware of your thoughts, emotions, bodily sensations, and perceptions as they are happening, without judgement. That is to say, mindfulness allows you to notice these experiences in the moment, acknowledging their occurrence, but not necessarily labeling them as good or bad. Mindfulness is about paying attention right now, not getting wrapped up in the past or present.
Many survivors may find that they sometimes think about their cancer-related pain, even when they aren’t actually feeling any. They worry about it coming back, and they worry about it getting worse. This anticipation of pain not only can increase your overall distress, but it can also make you more aware of your pain when it does return or increase. Mindfulness can help keep you in the present moment, focused on how you are feeling right now, and not on the pain you might feel in the future.
It is a given in the mental health field that a person’s mood and their perception of pain are connected. When you are depressed or sad, your pain often seems worse. Practicing mindfulness has been shown to improve emotion regulation, increasing positive emotions and decreasing negative ones. Overall, mindfulness is associated with decreased pain intensity in the moment, as well as longer-lasting decreases in perceived pain over time. So you see, it isn’t just a skill to be used only when you are experiencing pain. No, mindfulness can have long-term positive effects on pain management.
Mindfulness skills can be practiced at any time, in any place. However, if you are just starting, it may be helpful to practice in a warm, quiet location with few distractions (including your cell phone). People often find it most comfortable to practice mindfulness while sitting with their legs and arms uncrossed and resting gently.
Dr. Diane Novy
While mindfulness skills can be used in any moment when you are feeling pain, or anxiety related to your pain, you can practice these skills at other times as well. This way, you can have the skill down before the time comes when you really need to use it.
To practice mindful breathing, begin by focusing on your breath, the inhale and the exhale. Deeply inhale through your nose, hold your breath a moment, and then exhale slowly through your mouth. You may want to count along with your breath at first – count to three while breathing in, hold for two, and then exhale to a count of four.
Digging Deeper into Mindfulness
The following are recommended books and audio CDs to help you as you begin your mindfulness practice:
♦ Wherever You Go, There You Are: Mindfulness Meditation in Everyday Life by Jon Kabat-Zinn, PhD
♦ Mindfulness for Beginners: Reclaiming the Present Moment – and Your Life by Jon Kabat-Zinn, PhD
♦ The Miracle of Mindfulness: An Introduction to the Practice of Meditation by Thich Nhat Hanh
♦ Mindfulness Meditation for Pain Relief: Guided Practices for Reclaiming Your Body and Your Life by Jon Kabat-Zinn, PhD (Audio)
♦ Mindfulness Meditation: Nine Guided Practices to Awaken Presence and Open Your Heart by Tara Brach, PhD (Audio)
♦ Mindfulness Meditation: Cultivating the Wisdom of Your Body and Mind by Jon Kabat-Zinn, PhD (Audio)
As you breathe, notice the sensation of the air flowing through your nostrils. Notice the movement of your chest, and the feeling of the air entering and leaving your body. If your mind starts to wander, that’s OK. Just bring your attention back to the breathing activity. See if you can practice mindful breathing for five minutes. Then work your way up to seven or even ten minutes at a time.
Mindfulness Body Scan
This exercise is often done lying down, feet extended and hip-width apart, with arms by your sides, palms facing up. (However, feel free to do it sitting down as well.) During this exercise, you scan your body from head to toe – or toe to head – focusing your attention on each part of the body. Notice any tension or tightness in your feet, shins, thighs, etc., all the way up, and focus on softening that tension. Allow relaxation to occur in each muscle group before moving on to the next.
Try to spend about one minute on each body part. See how detailed you can become in your focus. Can you focus on a single foot, a single toe, the toenail on your pinkie toe? Your intention is to become aware of the sensations occurring in each part of your body as you scan through.
Mindfulness is a simple meditation practice that doesn’t take a lot of time and can easily be adapted to fit your needs. Practicing mindfulness can help you better manage cancer-related pain. It can also improve your mood and lower your stress. And though mastering mindfulness may take some practice, getting started is as easy as taking five minutes to breathe.
♦ ♦ ♦ ♦ ♦
Dr. Emily Cox-Martin is an assistant professor in the Division of Medical Oncology at the University of Colorado Cancer Center in Denver, CO. Dr. Diane Novy is a professor in the Department of Pain Medicine at the University of Texas MD Anderson Cancer Center in Houston, TX.
Guide to Lodging Accommodations
Links to these organizations and additional resources are available at copingmag.com/housing.
There are several reasons why people with cancer and their families may decide to travel to receive medical care. Some, especially in rural areas, may have limited access to oncologists and treatment facilities in their area. Others may travel to consult with a specialist, seek a second opinion on a diagnosis or treatment plan, or undergo a therapy that isn’t widely available. For cancer survivors and their families, finding accommodations can be a challenge. Many facilities offer lodging for free or for a nominal fee. Each temporary lodging program will have its own rules and criteria to qualify for services.
Many hospitals and American Cancer Society offices have agreements with nearby hotels and/or campgrounds for reduced rates for people with cancer and their families. Before traveling, contact the hospital’s social worker or the admitting desk for such information. Also, many of the major cancer centers have outpatient lodging run by the institution.
The following is a partial listing of organizations that provide or coordinate temporary accommodations for people with cancer and their families who must travel for medical care.
American Cancer Society Hope Lodge offers people with cancer and their caregivers a free, temporary place to stay when their best hope for effective treatment may be in another city. Accommodations and eligibility requirements may vary by location. To find a Hope Lodge or to learn more about a specific facility, call the American Cancer Society at (800) 227-2345 or visit cancer.org/hopelodge.
Cancer Financial Assistance Coalition is a group of organizations that help people with cancer manage financial challenges. CFAC offers an online database at cancerfac.org that allows users to search for national or local financial assistance by type of assistance needed, such as housing, or by cancer diagnosis.
Healthcare Hospitality Network, Inc. is a nationwide association of nearly 200 organizations that provide free or significantly reduced cost lodging and support services to patients and their families while receiving medical care away from their home communities. Call (800) 542-9730 or visit hhnetwork.org for a directory of members and houses.
Joe’s House, JoesHouse.org, provides a national, centralized list of accommodations that cater to people with cancer, their families, and caregivers when traveling away from home for medical treatment. Lodging options range from hospitality houses, hotels, host family matching programs, apartments, and more. Some lodging facilities listed are free of charge; others offer a discounted rate. Details on each lodging facility are available with information on amenities, rates, reservation methods, and requirements. Those who do not have Internet access may call (877) 563-7468. A representative will provide you with the lodging facilities listed as well as their reservation information.
The National Children’s Cancer Society helps families battling childhood cancer by offering direct financial assistance for non-medical expenses associated with treatment, including lodging, transportation, and food. Visit thenccs.org or call (314) 241-1600 to request assistance.
Ronald McDonald House Charities provides a “home away from home” for families of seriously ill children receiving treatment at nearby hospitals. In return, families either stay at no cost or are asked to make a donation of up to $25 per day, depending on the house. To find a Ronald McDonald House near you, visit rmhc.org or call (630) 623-7048.
♦ ♦ ♦ ♦ ♦
Contact each organization to obtain specific eligibility requirements. In addition, check with your local cancer treatment center, hospital, American Cancer Society office, or other cancer support organization for information about lodging or obtaining financial assistance for lodging for cancer survivors and their families. This listing was compiled by the editors of Coping® and may not include all lodging providers or coordinators.
A Buddy System for Courage
by Pamela Davis, EdD
When my oncologist suggested chemotherapy, I panicked. My perceived future played like a movie in my mind, fast-forwarding then stopping on scenes of frailty, vomiting, total loss of appetite, and incapacitation. As I began treatments, I still had visions of potential pain even though doctors and breast cancer survivors assured me that the chemo I was being prescribed wasn’t the monster I had imagined. Side effects, they explained, were often minimal, and co-therapies alleviated even severe reactions in most people.
But no amount of statistical data or anecdotal evidence could stop the melodrama replaying in my mind. Intellectually I knew that worry was not productive, so I challenged myself to adopt a new way of thinking, or at least find new things to think about. I tried to change my own mind, but it wasn’t until I found an accountability partner that I began to see success.
The theory behind accountability partnerships suggests that, when making difficult transitions, people are more successful if they have group support as they adopt new habits. This concept was one I was already familiar with. I exercised more consistently with a workout partner. And I completed my Doctor of Education dissertation with support from a weekly writing group. By the time I read that people with cancer benefitted from similar “buddy systems,” through not only decreased psychological stress but also alleviation of mild physical symptoms, I had already campaigned for an accountability partner of my own. Here’s how it happened.
I wanted to change the
horror show that played
in my mind
every time I thought about chemotherapy.
I evaluated the change I desired.
I wanted to change the horror show that played in my mind every time I thought about chemotherapy. I didn’t blame myself for being scared; my reaction was perfectly reasonable. Adverse side effects are a legitimate concern when considering any medication, especially one as toxic as chemotherapy. I needed to change the way I processed my anxiety, not dismiss it.
When looking for an accountability partner, I kept in mind that I needed someone who also had reasonable concerns about something going on in their life. Together, my partner and I had to be committed to remembering that life’s pleasures deserved focused attention, even in the face of fear.
My accountability partner and I agreed on mutually beneficial solutions.
My partner and I were dealing with different life issues. She was a small business owner being forced to close an established shop and begin again in a new location. She was worried about her livelihood. I was worried about my life.
When making difficult
transitions, people are
if they have group support.
Our partnership worked because we both had good reasons for our concerns. Neither of us were at fault for our predicaments, and, most importantly, we both wanted to help calm our minds by finding time during the day to focus on the good in life. She chose to state her daily gratitudes; I chose to recall my best moments. We texted each other every day.
We set a task that was challenging yet easy to sustain.
I was so overwhelmed with worry that I wasn’t sure that texting my best moment each day would calm my fears; I wasn’t even sure I could find any “best moments” to text. What I was sure of, however, was that I could send a text every night about something that I qualified as “not the worst thing that happened.” And that’s where I began.
Texting was our only action. We didn’t cheerlead or give advice. We kept the rhythm of nightly texts for 30 days. There were no discussions of cancer treatments or business plans, at least not in the context of our partnership.
As time went on, it became easier for me to recognize things I enjoyed each day because I knew I had to report at least one. This created a sort of cognitive dissonance with the worry narrative playing in my mind. I still felt fearful at the thought of chemo. However, what my accountability partner did for me was help me bal- ance my terror of treatment with a keen awareness that there was more to life with cancer than the side effects that aroused my fear.
♦ ♦ ♦ ♦ ♦
Dr. Pamela Davis is a stage II breast cancer survivor. She blogs about her experience at CrowdsourcingCancer.com.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, May/June 2016.
Here are some strategies to help you cope.
by Ann M. Berger, PhD, APRN, AOCNS, FAAN
Does cancer or cancer treatment leave you feeling exhausted? Do you feel physically, emotionally, or mentally tired? Do those feelings reduce your ability to participate in your usual activities? If you answered yes to these questions, you may be experiencing what your healthcare team refers to as cancer-related fatigue.
Many cancer survivors say they experience fatigue at diagnosis, during treatment, and even after treatment ends. A large number of survivors say that fatigue is more distressing than all the other cancer symptoms and treatment side effects they experience. Although most survivors report lower fatigue after the end of active treatment, some continue to experience fatigue that interferes with usual functioning for years.
The first step to combatting fatigue is to be aware of it. The next step is to tell your doctor or nurse that you are experiencing fatigue. Your healthcare provider will then assess your fatigue and help you come up with a fatigue-management plan. For most people, managing fatigue is a balancing act between conserving energy and participating in physical activity and exercise.
Managing fatigue is a balancing act between conserving
energy and participating in physical activity and exercise.
It’s important to set priorities for what you want to spend your energy doing, and then pace yourself throughout the day so you’ll have enough energy to do those activities. Knowing your usual patterns of fatigue will make it easier to plan your daily activities in order to best conserve energy. You can keep track of the times of day when you feel the most fatigued, as well as the activities you find most draining, by recording them in a journal, computer program, or smartphone app. This will allow you to easily see when your fatigue is better or worse and plan accordingly. Try to schedule high-energy tasks, such as shopping or exercise, during times of the day when your fatigue is usually lower.
Another aspect of managing fatigue is learning which activities worsen your fatigue and reducing the time you spend doing them, or simply delegating those tasks to others. It’s especially important to delegate energy-draining tasks when your fatigue is moderate to severe. The goal is to remain as active as possible by learning to balance activity with rest in order to avoid overexertion and, therefore, more severe fatigue.
Research has confirmed that regular physical activity is the most effective strategy for reducing physical fatigue in cancer survivors. All survivors are encouraged to begin, or continue with, an exercise program that includes both resistance training (such as light weightlifting) and endurance activities (like walking, jogging, or swimming).
Many communities offer exercise and yoga classes for adult cancer survivors. However, since exercise programs are not one-size-fits-all, talk with your doctor or nurse before starting any exercise program, even one that is geared toward cancer survivors. Your doctor may suggest you meet with a rehabilitation specialist to help you develop an individualized exercise plan that allows you to increase your physical activity safely without worsening your fatigue.
If your fatigue is moderate to severe, your doctor may want to address other factors that could be exacerbating your fatigue. These may include
- emotional distress
- sleep disturbances
- other chronic diseases or conditions
- deconditioning (from a lack of physical activity)
- nutritional deficits or imbalances
If you have other chronic diseases, such as hypertension, diabetes, or arthritis, it’s important that your symptoms be well-controlled so they don’t worsen your cancer-related fatigue.
A Note on Napping
It’s OK to take short naps during the day. However, keep in mind that daytime naps should last no longer than one hour and should be taken at least four hours before bedtime so as not to interfere with nighttime sleep.
Cancer-related fatigue is not a trivial issue. It is very important that you discuss your fatigue – and the problems it may be causing – with your healthcare provider, especially if your fatigue is severe or if you are so exhausted you can’t function in your usual activities. Managing fatigue is critical to your well-being. By working with your doctor to develop a fatigue-management plan, you can reduce the distress caused by cancer-related fatigue so you can get back to enjoying life.
♦ ♦ ♦ ♦ ♦
Dr. Ann Berger is a professor and Dorothy H. Olson Endowed Chair in Nursing at the University of Nebraska Medical Center in Omaha, NE.
Spiritual Care for Cancer Survivors
Finding ways to nurture your spirit can bring wholeness and wellness during cancer treatment and recovery.
by Walter V. Moczynski, DMIN, BCC
Life is filled with challenges. Likewise, the cancer journey can have many pauses or jolts that can disrupt your inner peace, drain your strength, cause you to question your meaning and purpose, and cloud your relationships and your future. No matter where you are on the journey, when you find yourself in a challenging situation that stops you in your tracks, you can draw upon spiritual resources within and around you to move beyond surviving to living again. But in order to do that, you must tend to your spirit.
Spirituality can mean different things to different people. For many, spirituality means connecting to a transcendent deity or God. For others, it is tapping into a vast expanding cosmos or to the environment around them and all living creatures. Others may look inward, finding spirituality within a beating heart or in every breath.
Regardless of whether your sense of spirituality comes from a particular religion with rich traditions, rituals, and community or simply from within yourself, finding ways to nurture your spirit can bring wholeness and wellness in the course of cancer treatment and recovery.
Initiate sacred time and space in your life.
Many of us are inundated with endless daily tasks in caring for ourselves, for our livelihoods, and for others. Trying to find time for yourself in a society that values busyness can be daunting. Add to that an additional level of medical appointments, tests, treatments, recovery, and more appointments, and your calendar is likely beyond full. But, no matter how busy you are, you can – and must – initiate sacred time and space for yourself.
No matter how busy you are, you can – and must – initiate
sacred time and space for yourself.
Establish a time and space to settle your thoughts, reclaim your breath, and connect to your spirit in a peaceful way. Your sacred space is not limited to a fixed time or location. It can be morning, noon, or evening. You can hold this space in your home, or you can carry it to other places, like the waiting room, for example. While some people embrace the stillness of the day, your personality may move you to go for a run, swim, or walk.
Once you have initiated a time and place for your spiritual self-care, be peaceful and free. Allow yourself to experience this peace with simple breath repetitions, meditation, or prayer. Let your thoughts come to the surface and then drift away to be connected with your spirituality. Free yourself to move from the “why me?” of cancer to the “what now?” Begin to embrace life, family, and friends in a new light, set new goals, and love yourself.
Uncover meaningful signs and
Signs and symbols are robust ways to have a tangible connection to your spirituality. They allow your senses in be in tune with your thoughts. Yours may be a sacred written word, phrase, object, poem, prayer, photo, work of art, or song lyric. Find one or more that reminds you of a sacred connection or that represents comfort, joy, strength, or hope.
Discover spiritual resources.
Though you may be surrounded by family members, friends, and medical caregivers along the cancer journey, you may still feel alone in the midst of many people. Reach out to foster relationships that are important to you. Find a friend, clergy member, or chaplain to be a spiritual guide. Explore sacred texts, inspirational stories, rites and rituals, worship, music, and jour- naling that connect with you. Follow creative pursuits to nourish your spirit and deepen your understanding of the world around you. You may also want to consider connecting with a spiritual community, such as a church, mosque, sangha, synagogue, temple, or other assembly of worship to deepen your spirituality and break that feeling of isolation.
You are not alone on this journey. An eternal presence of hope and love is woven within many religious traditions and spiritual practices. You need simply to find the ones that resonate with you.
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Dr. Walter Moczynski is the director of the Center for Spiritual Care at the Dana-Farber Cancer Institute in Boston, MA, and a field education supervisor at Harvard Divinity School in Cambridge, MA.
Food for Life
Eating Well during Cancer Treatment and Beyond
by Maria Petzel, RD, CSO, LD, CNSC, FAND
When you’re undergoing cancer treatment, so many things can seem out of your control. However, one thing most survivors can control is nutrition.
During treatment, making the right food choices can help you manage symptoms, improve your tolerance of treatment, and increase your quality of life. Once treatment ends, good nutrition can help rebuild your body after cancer; it may also decrease your risk of some cancers coming back. Making nourishing food choices is one way you can play an active role in your treatment and recovery.
Eating to Ease Side Effects
Good nutrition can help you cope with some common side effects of cancer treatment, such as taste changes, sore mouth or throat, and poor appetite. Nausea, diarrhea, and constipation can also be relieved by combining the right food choices with proper medications.
For taste changes
Rinse your mouth with a baking soda and water solution (or water with lemon if you have no mouth sores) before and after meals. If foods taste metallic, use plastic utensils and avoid drinking from metal containers. To enhance dull taste, add tart foods and condiments (such as pickles, lemons, and vinegar) to your meals. This is also a good time to try new foods or foods you have previously disliked, as they may taste different to you now.
Making the right food
choices can help you
manage symptoms, improve your tolerance of treatment, and
increase your quality of life.
For sore mouth or throat
Eat soft, moist foods with extra sauce, dressing, or gravy. Instead of eating hot foods, eat foods that are room temperature or chilled. Avoid irritating foods and drinks, such as alcohol, citrus, caffeine, tomatoes, vinegar, and hot peppers.
For poor appetite or weight loss
Try to eat meals and snacks in a peaceful, low-stress environment. You may be able to boost your appetite by walking or exercising for a few minutes before each meal. Eat frequent, nutrient-dense meals and snacks with protein. If needed, replace some small meals with liquid nutrition drinks or homemade smoothies fortified with protein, and without added sugar. Increase your calorie intake by adding granola, dried fruit, avocado, or healthy oils (such as olive oil or canola oil) to meals and smoothies.
Tips for Healthy Eating
1 Eat small, frequent meals – about six to eight a day.
2 Plan your meals and snacks ahead of time. Don’t wait until mealtime to decide what to eat.
3 Drink plenty of fluids. Most people need six to eight cups per day.
4 Choose nutrient-dense foods, such as whole grains, fruits, and vegetables.
5 Eat protein with every meal and snack. Good protein choices include plant-based foods like beans, lentils, nuts, seeds, and tofu, as well as lean meats (especially fish and poultry), eggs, and low-fat dairy products (such as yogurt, cheese, and milk).
For nausea and vomiting
Small, frequent meals and snacks at room temperature are usually better tolerated by those experiencing cancer-related nausea and vomiting. Eliminate offending odors in the room where you eat, or where food is being prepared, by opening a window or running a fan. Do not fill up on liquids during mealtimes; drink in between meals instead. If your stomach is empty, start by eating dry toast or a few crackers before commencing with your meal. Avoid overly sweet, rich, greasy, or spicy foods. Some people may find tart and tangy foods to be helpful in abating nausea. In addition, drinking ginger tea or ginger ale may help ease nausea.
Eat foods that are high in soluble fiber, such as oats, bananas, apples without the peel (or applesauce), and citrus fruits without much membrane. Drink plenty of fluids. Drinks that have electrolytes (such as low-sugar sports drinks or oral rehydration solutions) may work best. Avoid hot liquids. Decrease or avoid sugar-sweetened beverages, foods sweetened with sugar alcohol, and foods high in insoluble fiber (such as raw vegetables, thick-skinned fruits, seeds, and high-fiber whole grains, such as bran cereal). If you are lactose intolerant, use lactose-free dairy products or take lactase pills with meals that contain dairy.
Increase fluid intake, especially warm and hot liquids. Eat prunes or drink prune juice. If fluid intake is adequate, gradually increase intake of foods high in insoluble fiber, such as those listed above. To avoid additional discomfort when constipated, avoid gas-forming foods and behaviors, such as drinking through straws, chewing gum, and drinking carbonated beverages.
Eating Well after Cancer
Even after cancer treatment is complete, nutrition continues to play an important role in health and wellness for survivors. Eating well can help prevent new cancers, lower your risk of cancer recurrence, and protect against heart disease and other health conditions. After cancer, you should strive to eat a plant-based diet that includes two and a half to four and a half cups of vegetables and fruits each day and that is high in whole grains. You should also limit your consumption of red meat, processed meat, and processed foods, as well as foods that are high in sugar, fat, or salt and those that are low in fiber. It’s also important to be physically active and to maintain a healthy weight.
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Maria Petzel is a senior clinical dietitian at The University of Texas MD Anderson Cancer Center in Houston, TX. She is certified in both oncology nutrition and nutrition support.
To create your own healthy eating plan during or after cancer treatment, consult with a registered dietitian, preferably one who is a certified specialist in oncology nutrition (CSO). Registered dietitian nutritionists (RD or RDN) are food and nutrition experts who can help translate the science of nutrition into practical, individualized solutions for survivors and caregivers. Ask your doctor for a referral.
Breathing Easier When You Have Lung Cancer
How Pulmonary Rehabilitation Can Help
Information from LUNGevity.org
Having the best quality of life possible – both during and after treatment – is a goal for most people living with lung cancer. An important component of that is being able to breathe well.
You can learn to manage your breathing through pulmonary rehabilitation, which is a medically supervised program to help people with lung cancer improve their overall physical, mental, and social functioning. The goals of a pulmonary rehabilitation program are to help you improve your functional capacity and help you understand and manage your disease. Therapists will teach you about your lungs and how to exercise and do activities with less shortness of breath.
Many hospitals and healthcare providers offer pulmonary rehabilitation services. Ask your healthcare team for ones in your area that you may be eligible for.
Components of the Program
A physician-supervised program begins with an initial assessment by a registered nurse and exercise physiologist. The central components are a safe, supervised plan and exercise tailored to each individual and monitored by a team of professionals trained in chronic lung diseases.
In addition, a full range of group education classes (including nutrition, medications, chest physiotherapy, anatomy and physiology of the respiratory system, and inspiratory muscle training) may be available and taught by dietitians, health psychologists, nurses, and exercise physiologists.
What Are the Benefits?
The focus is to combine exercise and education to help you manage your disease and increase your quality of life. It may not sound like much, but 30 percent improvement in your ability to walk allows you to get your daily activities done without as much fatigue, shortness of breath, or anxiety.
A How-To Guide
While in pulmonary rehab, you’ll learn strategies that can improve your breathing. For example, pursed-lip breathing decreases how often you take breaths and keeps your airways open longer. This allows more air to flow in and out of your lungs so you can be more physically active.
To do pursed-lip breathing, you breathe in through your nostrils.
Then you slowly breathe out through slightly pursed lips, as if you’re blowing out a candle. You exhale two to three times longer than you inhale.
Some people find it helpful to count to two while inhaling, and to four or six while exhaling.
Pulmonary rehab exercises increase your heart, lung, and circulatory functioning level. Start at a slow, comfortable pace, and gradually increase your time and intensity. Consult with your medical care provider prior to starting any exercise program.
What to Expect
Pulmonary rehabilitation can have many parts, and not all programs offer every part. Here are some of the elements a pulmonary rehabilitation program may include.
Your rehabilitation team will give you a physical activity plan tailored to your needs. They’ll design the plan to improve your endurance and muscle strength, so you’re better able to carry out daily activities. The plan will likely include exercises for both your arms and your legs. You might use a treadmill, stationary bike, or weights to do your exercises.
If you can’t handle long exercise sessions, your plan may involve several short sessions with rest breaks in between. While you exercise, your team may check your blood oxygen levels with a device that’s attached to your finger. You’ll probably have to do your exercises at least three times a week to get the most benefits from them.
The data your pulmonary rehabilitation team gathers when you start the program will show whether you’re overweight or underweight. Both of these conditions can make it hard for you to breathe.
If you’re overweight, fat around your waist can push up against your diaphragm, giving your lungs less room to expand during breathing. Your team may recommend a healthy eating plan to help you lose weight.
You also can have breathing problems if you’re underweight. Some people who have chronic (ongoing) lung diseases have trouble maintaining weight. If you lose too much weight, you can lose muscle mass. This can weaken the muscles used for breathing.
If you’re underweight, your team may recommend a healthy eating plan to help you gain weight. They also may give you nutritional supplements to help you avoid weight loss and loss of muscle mass.
One way to help prevent symptoms like shortness of breath is to find easier ways to do daily tasks. Pulmonary rehabilitation programs often give you tips on how you can conserve your energy and breathe easier. These tips include ways to avoid reaching, lifting, and bending. Such movements use energy and tighten your abdominal muscles, making it harder for you to breathe.
Stress also can use up energy and make you short of breath. Many pulmonary rehabilitation programs teach relaxation skills and ways to avoid or relieve stress.
♦ ♦ ♦ ♦ ♦
Reprinted with permission from LUNGevity.org.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, May/June 2016.
When Cancer Affects Your Sexual Health
by Mindy R. Schiffman, PhD
A cancer diagnosis is life changing. In addition to the emotional jolt of confronting your own mortality, you may experience physical changes that affect your body image and sexuality. The sexual response is exquisitely sensitive to change, even under “normal” circumstances like a new partner, a different room in your home, or even the time of day. Suffice it to say, cancer and its treatments can have an enormous impact on sexuality. And if you’re in a romantic relationship, your partner may also be left reeling in cancer’s wake.
Who is at risk for sexual dysfunction after cancer treatment?
Those with dramatic changes to their bodies, or whose cancer affects a reproductive organ, are at greater risk for sexual problems following treatment. Moreover, if your romantic relationship, body image, or sexual functioning were already troubled, cancer will likely exacerbate those problems. Chronic pain or fatigue, as well as untreated depression or anxiety, can also impede a cancer survivor’s return to a healthy post-cancer sexual life.
What are some common sexual problems men and women face after cancer treatment?
Women are apt to feel less desire to be sexual, as well as decreased sexual pleasure. They may also experience pain during penetration due to a decrease in the body’s natural lubrication. Men are more likely to worry about getting and maintaining an erection, which can lead to avoiding sexual encounters. They may also experience a decrease in sexual desire.
What are some things my partner and I can do to reestablish sexual
It is important to stay physically close, even when sex is not on the agenda. Continue to kiss, touch, and caress each other. Engage in activities outside of the bedroom that might help nurture your sexual interest. Write each other love notes, go out dancing, enjoy a romantic dinner. You and your partner may also need to reestablish how to initiate sex and redefine what your focus is during a sexual interaction. This means you have to talk to one another – about sex.
Many people think they shouldn’t have to talk about sex; lovers should just know what to do. However, sex therapists have long advocated that communicating your sexual concerns and desires is the gateway to better sex. Talk to your partner about your worries, your wishes, and your desires. Initiate these conversations outside of the bedroom, not in the midst of a sexual interaction, and speak in a non- confrontational, conversational tone.
After cancer, you may also have to change how you think about sexual encounters, specifically, when they should occur and what you feel comfortable doing. Some people believe that sexual encounters should be spontaneous; however, after cancer, desire just may not be there. Don’t wait to be “in the mood” to initiate sexual or sensual contact. Instead, plan some time for sensual interludes that may (but do not necessarily) lead to a sexual interaction. Before each one, discuss your sexual limits as you work your way back to a more spontaneous, fluid sexuality. For example, you may want to begin with kissing and non-genital touching, then gradually move to increased levels of sexual intimacy. When you set aside time to focus on intimacy, keep your thoughts on sexual images or fantasies; with touch, arousal is likely to follow.
You may also need to reframe your definition of sex. Sex is not just intercourse. Instead, think about sex as sensually pleasing activities that you and your partner take turns giving and receiving. The focus of sex should be on intimacy and pleasure, not a specific outcome. This will help take the pressure off “performance.” Penetration and orgasm are not the goals; pleasure is.
As you become more comfortable with your post-cancer body and begin to reestablish intimacy with your partner, experiment with different positions to attempt intercourse. Always use a water-based lubricant, which increases arousal and decreases pain. And be sure you are both ready for penetration before proceeding.
You can expect that there may be awkward moments. You or your partner just may not respond as you once did, or even as you would like to. Try to maintain a sense of humor. Remember, sex is supposed to be about intimacy and pleasure, not about pressure and proving yourself.
♦ ♦ ♦ ♦ ♦
Dr. Mindy R. Schiffman is a clinical psychologist at the New York University Langone Fertility Center, a clinical instructor in NYU’s obstetrics and gynecology department, and a certified sex therapist and supervisor. She also has a private practice in individual and couples counseling. Dr. Schiffman specializes in helping people cope with the emotional stress of illness, including reproductive loss, sexual dysfunction, grief and bereavement, and interpersonal conflict.
If you find that your sex life isn’t improving, even after attempts to restore intimacy with your partner, talk to your doctor. He or she can answer your questions, refer you to a specialist, and help you find solutions.
Inspiration and Progress:
Our National Commitment to Defeat Cancer
A National Cancer Institute Annual Report
by Douglas R. Lowy, MD, acting director of the National Cancer Institute
Every year, for the past two decades, the National Cancer Institute has had the honor of writing an article for Coping’s July/August issue. While searching for a fitting theme for this year’s contribution, I was struck by the challenge we sometimes face – both as individuals touched by cancer and as a nation – in articulating the inspiration needed to confront cancer.
As a cancer researcher, I am personally inspired by the fact that each day will bring new insights to our quest to better prevent, detect, and treat many forms of cancer in adults and children. It is a quest that has produced unmistakable progress, yet with much more still to do.
Thanks to the great strides we have made over the years, people are living longer today after a cancer diagnosis due to earlier detection and improved treatments. The number of people surviving cancer has more than doubled in the last quarter century in the United States. In 1992, there were 7 million survivors; in 2016, that number rose to 15.5 million; and by 2026, it is expected to increase to more than 20 million.
Working closely with leading cancer investigators in the U.S. and around the world is another source of inspiration for me. Years of investment in biomedical research have transformed both our understanding of and approach to researching and treating cancer. I hear unprecedented optimism that we are on the verge of pivotal advances in oncology. And just as important as what happens in research institutions like the NCI, there is also an extraordinary resurgence of commitment and determination across government, academia, industry, and the patient community.
During the president’s final State of the Union address in January of this year, I was most gratified to hear President Barack Obama announce the launch of the Cancer Moonshot. The initiative, led by Vice President Joe Biden, aims to double the rate of progress in cancer research and bring therapies to more patients, striving to fast-track what might otherwise be achieved in ten years in just five. This opportunity to make tremendous breakthroughs in the field is enormously inspiring.
The number of people surviving cancer has more than doubled in the last quarter century in the United States.
Vice President Joe Biden addresses a meeting of the Cancer Moonshot’s Blue Ribbon Panel on June 13, 2016.
(Photo by The White House / David Lienemann)
To ensure that the Cancer Moonshot Initiative’s goals and approaches are grounded in the best science, the White House established a Blue Ribbon Panel, a working group of the National Cancer Advisory Board. The Blue Ribbon Panel, whose 28 members include leading experts representing a range of scientific disciplines, government agencies, cancer centers, universities, and leaders from industry and the patient advocacy community, is responsible for recommending and guiding the scientific direction and cancer research efforts to be funded by the initiative over the coming years.
The panel created seven working groups, each comprising more than a dozen subject matter experts and patient advocates, to focus on providing the Vice President with their best thinking to guide the Cancer Moonshot. The working groups began their meetings in May, continuing weekly through mid-summer, and deliberated research opportunities in seven priority areas. The goal of each working group was to identify two to three of the most promising opportunities in cancer research that, with additional funding and focus, were poised to produce significant breakthroughs within a short period of time.
Both the White House and NCI cast the widest net possible and invited researchers and the general public to submit their best ideas for preventing and treating cancer for the Blue Ribbon Panel to consider. Approximately 850 ideas were submitted via NCI’s CancerResearchIdeas.cancer.gov website. Members of the Blue Ribbon Panel also held sessions at the annual meetings of the American Association for Cancer Research and the American Society of Clinical Oncology, as well as participated in online chats to encourage people to submit research ideas for consideration.
The effort and commitment of the members of the Blue Ribbon Panel and the working groups have been truly astounding. Leaders across the cancer community placed their already full schedules on hold to focus on this important work. The culmination of this effort will be a report to the National Cancer Advisory Board later this summer presenting five to ten actionable ideas that are recommended for funding under the initiative.
More and more, research and treatment approaches are informed
by input from the patient community, ensuring that patients
and families are treated as partners.
As the Blue Ribbon Panel deliberations are winding down, other efforts and activities of the initiative are being launched. On June 29, the Vice President hosted an unprecedented Cancer Moonshot Summit, a daylong conference in Washington, D.C. Attendees included scientists, oncologists, and patients who came together to help galvanize the push to double the pace of cancer research. What made it both a national and local event were the many regional summits that also took place in communities across the nation.
In addition to the priority programs being recommended by the Blue Ribbon Panel, the Cancer Moonshot is expanding or adapting several existing government initiatives to make conducting and participating in cancer research easier for both researchers and patients:
Increased Access to and Awareness of Cancer Clinical Trials
Clinical trials are a critical part of the research process for the development of new treatments for cancer. But only about five percent of adult cancer patients in the U.S. currently participate in cancer clinical trials. Under the Cancer Moonshot, NCI is working to make searching for a clinical trial on the NCI website, cancer.gov, easier for patients, physicians, and others. We are also working to encourage more patients from racially/ethnically and socioeconomically diverse populations to consider participating in a cancer clinical trial. These communities experience a disproportionate burden of cancer and historically have not been well-represented in clinical trials. Achieving health equity in cancer detection, treatment, and survivorship requires clinical trials with populations that are representative of the nation’s diversity.
Expanded Precision Medicine
The idea behind precision medicine is to treat patients according to their individual genes, lifestyles, and environments within which they live. By expanding the Precision Medicine Initiative announced by President Obama last year, we have the opportunity to accelerate research and provide clinicians with new tools to select targeted and tailored cancer prevention methods and therapies that will work best with the least toxicity in individual patients.
Greater Research Access to
Accessing drugs from different pharmaceutical companies to test combinations of therapies in clinical trials can be time-consuming, expensive, and difficult. But prescribing two or more drugs instead of just one can often help patients avoid developing resistance to a single drug and make therapies as effective as possible. To speed the development and delivery of effective combinations of treatments to cancer patients, NCI is developing a virtual cancer drug formulary, or library, which would give researchers access to a large number of drugs contributed by pharmaceutical companies to test in combination with others.
Greater Access to Genomic Data
Last month, NCI launched its Genomic Data Commons, a first-of-its-kind, open-access, cancer data-sharing repository that allows researchers to contribute data from decades of research studies conducted around the world into one repository to facilitate access, sharing, and reanalysis of the raw data. Among the data the GDC will store, with safeguards for patients’ privacy, are the treatments that patients received and patient response, enabling investigators to gain a deeper understanding of cancer and develop more effective treatments.
The Cancer Moonshot has asked a great deal of the cancer community in stepping forward to accomplish a monumental amount of work in such a short period of time. The community, including the survivor and advocacy communities, has generously and enthusiastically responded with the understanding that what they are contributing now will make a difference for the future. I am grateful for their service, humbled by their contributions, and confident that the results will benefit everyone who cares about cancer.
More and more, research and treatment approaches are informed by input from the patient community, ensuring that patients and families are treated as partners. They bring a vital point of view to the process, providing a better understanding of the unique physical, psychological, social, and economic needs of the growing population of cancer survivors, and enhancing our ability to address those needs.
Working in partnership with survivors and patient advocates helps to keep our healthcare system in check, ensuring none of us loses sight of the fact that healthcare is not just about medicine, treatment, and statistics. Above all, it’s about the enrichment of people’s lives by improving outcomes and providing inspiration and hope.
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Since 1994, the National Cancer Institute has written an exclusive annual report for Coping’s July/August Celebration issue.
My Cancer Transformation
by Jaime Andrews
I was 33 years old when I learned I had breast cancer. Not only did I have cancer – I had aggressive, advanced cancer. This unrelenting disease is diagnosed in the later stages and is referred to as metastatic, a word with Greek origins meaning change. It’s when the tumor spreads to other parts of the body. For me, it spread to my skull, spine, pelvis, and abdomen. It even fractured my ribs.
Another definition of metastasize is “to transform.” That’s how I choose to define my diagnosis – as a transformation.
One year after my mother’s own death from cancer, the disease crept in to my body while I was busy chasing after my two young children. Upon diagnosis, I learned that my type is known as HER2-positive metastatic breast cancer. It is estimated that about 20 percent of breast cancers are HER2-positive, and this type of breast cancer tends to be more aggressive and to spread more quickly than other cancers.
There’s no cure for my cancer; I’ll likely remain on my treatment, Kadcyla, for the rest of my life. It would be easy to let stress, anxiety, and negativity bring me down. Instead, I view cancer as my opportunity for transformation. I choose to remain optimistic and hopeful, because my life is more full of love and joy than it has ever been.
It would be easy to let stress, anxiety, and negativity bring me down. Instead, I view cancer as my opportunity for transformation.
During the past five years, cancer has ultimately given me a greater appreciation for the big and the small moments I have with my husband, my 10-year-old son, and my 7-year-old daughter. As a family, we celebrate a “livin’ life list” to help us focus on shared experiences. Over time, we’ve created many lasting memories, including swimming with dolphins and visiting Disney World.
When we’re not having fun as a family, I’m busy launching a new business endeavor as an independent fashion consultant. The work is flexible, yet fun, and it pushes me out of my comfort zone. Working allows me to contribute to my family as well as realize my career goals. It also helps take the focus off of cancer.
Most people in their 30s are career-driven, focused on advancing their positions in the workplace, trading one job for a more rewarding one. But life with cancer changes everything. I have found little support and training for people like me who want to continue working. As a person with advanced cancer, I strongly believe that investing in doing work you love can help transform your overall quality of life. That’s why I decided to start my own business.
Like the other 155,000 Americans living with metastatic breast cancer, I’m hopeful for more awareness, support, and resources for people thriving in spite of this disease. My advice to other cancer survivors is to follow what sparks joy and makes you feel alive – it’s the very thing that helps me to thrive!
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Jaime Andrews is a young adult metastatic breast cancer survivor and thriver living in Marietta, GA.
A New Perspective on Life after Cancer
by Pamela J. Ginsberg, PhD
Being diagnosed with cancer is one of the most devastating and frightening experiences a person may ever face. Cancer can completely disrupt your life, sending you into a tailspin of fear, uncertainty, and loss of control. It will bring on a myriad of psychological and logistical challenges. And they all must be confronted at a time when you feel vulnerable and destabilized.
However, though difficult, it is possible to work through these challenges and to not only restabilize your life but also grow from the experience. Psychologists call this concept post-traumatic growth. And it refers to the process by which a person grows stronger and more contented as they overcome difficult and traumatic experiences.
Growing through the Cancer
For cancer survivors, post-traumatic growth happens when you take on the cancer experience with a sense of strength, when you allow yourself to be open to the new perspectives and new understanding that can come from going through such a difficult time. Many people find themselves reevaluating their priorities after cancer and developing a clearer understanding of what is truly important. I often hear from cancer survivors that life after cancer is much more precious, and that they appreciate their loved ones more.
Some people find that the experience helps them to understand who their real friends are, and gives them strength to let go of relationships that do not serve them well. Many people see this as especially freeing, and they are grateful that the cancer experience helped them find this new perspective.
You must learn to live with uncertainty in a way that was never really relevant before your diagnosis.
Facing Down Fear
Though cancer can be an experience fraught with fear, it is important to recognize how your relationship to fear is affecting you. Fear is a normal human response, and having fear doesn’t mean you are doing something wrong. However, allowing fear to be the driving force behind your decision-making can lead to regrets. Remember, you are in the driver’s seat of your decisions; fear is only the passenger. You will inevitably feel some fear, but you can’t let it control you. When faced with a tough decision, get the facts, talk it through with trusted others, and take your time before deciding.
Coping with Uncertainty
After a cancer diagnosis, and even after your treatment is completed, you will likely discover that there is more uncertainty still to come. Your physicians can give you the statistics if you want them, but many people find little comfort in those numbers.
To thrive after cancer, you must learn to live with uncertainty in a way that was never really relevant before your diagnosis. Cancer is a life-changer, but learning to embrace your new normal with all of its unknowns can infuse your life with vitality. There is, and always has been, uncertainty in your life, but cancer makes you more aware of it than ever before. Choose to embrace and accept this crazy adventure, with all of its twists and turns. Don’t waste your life searching for certainty; that is a fruitless search driven purely by fear.
Try to be both realistic and optimistic as you care for yourself after cancer. Follow your physician’s instructions for self-monitoring, lifestyle modifications, healthy habits, and follow-up exams. But be optimistic about your future, your happiness, and your life’s satisfaction. Cancer will always be part of your story, but it’s certainly not the whole story.
You are in charge of writing the cancer chapter of your life’s story. You can decide how you move through this experience, what it means to you, and how it will change you. Let this experience strengthen you, your relationships, your priorities, and your values. Learn to accept help. And, above all, have faith in yourself that you can live a full, meaningful, and beautiful life – even after cancer.
♦ ♦ ♦ ♦ ♦
Dr. Pamela Ginsberg is a licensed psychologist in Doylestown, PA. She specializes in women’s health, pscyho-oncology, and women’s issues. She serves on the board of directors for the Cancer Support Community of Greater Philadelphia and is a speaker and consultant for several cancer-related organizations. To learn more or to contact Dr. Ginsberg, visit pginsbergphd.com.
Stop Keeping Up (and Down) with the Joneses
Don’t Get Caught in a Thought Trap When Making Decisions about Prostate Cancer
by Andrew J. Roth, MD
It’s easy to compare yourself to men who look healthier than you and wonder if you will have their good luck. You may make negative self-comparisons with others who look stronger and healthier and wonder, How come my luck was not as good? It is even more unsettling to see someone who looks more ill than you and wonder if that is the road you will be heading down, and when.
Comparing your own situation to another’s is risky because there is a very large margin for error. Men with prostate cancer may have different cell types and different stages of disease at any point in time, as well as at the time of diagnosis, and they may have had different treatments or different regimens of the same treatment.
Medical care always needs to be individualized. This is why Internet hunting can be so frustrating. Men tolerate the same treatments differently and have diverse complications. Every man comes to his prostate cancer experience with a different genetic and physiological makeup, having had unique life experiences and losses, as well as having developed his own coping patterns for dealing with those experiences. Each has distinctive support systems and health problems. Men have unique needs for the amount and type of information that will help them make the best treatment and life decisions for them.
Comparing your own
situation to another’s
because there is a very large margin for error.
If you start to freak out because you think you made, or will make, the wrong treatment choice, remember some of the thought traps you might be stepping into. Uncertainty can pull you in the wrong direction. When you start feeling this way, try using the DRAFT technique:
Information from others and the Internet can sometimes be useful. Other people can help you understand general parameters or responses, as well as help you see that you can get through the treatment, overcome complications, and be able, after the tincture of time for physical and emotional recuperation, to speak about it in an encouraging way. However, it is important not to take any information too literally and to try not to generalize from any one situation to your own.
Just as statistics can be confusing and inadvertently deceptive for a man who wants to know where he will stand in the future as a unique entity, it is problematic to generalize from the experience of one or a few men and believe that is how you will wind up. Have you ever purchased an item you were disappointed with that a friend raved about? Or have you listened to a highly recommended “could-not-miss” song, or read a “great” novel, or seen a “fantastic” movie and felt let down?
It doesn’t mean you shouldn’t listen to others’ experiences and recommendations about their choices and perhaps try some out; however, the listening about health issues must be done with a discerning ear – this is information that you will assess in the context of your body and lifestyle, but will not be a blanket guarantee of a particular outcome. It is important to keep these concerns in mind to avoid the all-too-common thought trap of overgeneralizing.
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Dr. Andrew Roth is the psychiatry liaison to the Genitourinary Medical Oncology Program at Memorial Sloan Kettering Cancer Center in New York, NY, where he has helped men and their families navigate the uncertainties of a prostate cancer diagnosis for the last 20 years.
Excerpted from Managing Prostate Cancer: A Guide for Living Better. Oxford University Press, 2015. Copyright © 2015. Reprinted with permission.
What to Do If You’ve Been Diagnosed
with an MPN
Myeloproliferative neoplasms (MPNs) are a closely related group of progressive blood cancers in which the bone marrow typically overproduces one of the mature blood elements. Other shared features include tendencies toward blood clotting or bleeding, organ enlargement, bone marrow scarring (fibrosis), and a possibility of transformation. Although MPNs can strike anyone at any age, most people are affected in the sixth decade of life or later.
Stem cell transplants may offer a cure for some people with myelofibrosis. But there are no known cures for most MPNs. However, people with MPNs can experience few or no symptoms for extended periods of time, and many people who have MPNs can enjoy longevity with proper monitoring and treatment. The identification of the JAK2 gene marker in 2005 and the CALR gene marker in 2013 have led to significant advances in the diagnosis, understanding of disease processes, and treatment of MPNs.
Types of MPNs
There are three blood cancer types that are categorized as “classic” MPNs:
♦ Primary Myelofibrosis (MF) – Most commonly seen in men and women over the age of 60, MF is a chronic blood cancer in which the bone marrow function is impacted by scarring. People with MF often have associated symptoms and an enlarged spleen. MF can occur in people with no prior history of an MPN (primary MF) or as a progression of polycythemia vera or essential thrombocythemia.
♦ Essential Thrombocythemia (ET) – ET is a blood malignancy that is typically characterized by an elevation of platelets in the blood. It is most prevalent in women over the age of 50, and common symptoms include blood clotting and bleeding. People with ET have a later risk of progression to MF.
♦ Polycythemia Vera (PV) – Characterized by an elevation of red blood cells, PV is most commonly diagnosed in men over the age of 60. People with PV often exhibit elevated white blood cell and platelet counts, as well as an enlarged spleen.
MPNs are rare diseases. Whether you have polycythemia vera, essential thrombocythemia, or myelofibrosis, chances are you will experience a steep learning curve.
Tips for the Newly Diagnosed
An MPN diagnosis can be a confusing and emotional experience. Here are 7 practical tips that may be useful for people newly diagnosed with an MPN, as well as others who are struggling to cope with an MPN.
1 Become informed about your
MPNs are rare diseases. Whether you have polycythemia vera, essential thrombocythemia, or myelofibrosis, chances are you will experience a steep learning curve. Rather than feeling overwhelmed, take it day by day and be sure to ask your doctor for help.
2 Keep track of important information in a paper or electronic file.
It’s not unusual for people diagnosed with an MPN to be treated by multiple doctors. To stay on top of your treatment routine, it’s critical to record notes from doctor appointments, questions for and answers from your physician, dates of appointments, test results, blood cell counts, medications and dosing schedules, prescription refills, and other information.
3 Find a mentor.
Peer-to-peer matching programs can be valuable for identifying a seasoned mentor who can help you walk through the initial stages of an MPN diagnosis. As you become more knowledgeable about the challenges people diagnosed with an MPN face, you may eventually consider becoming a mentor for others.
4 Get a second opinion if you need one.
Make sure you consult with a physician who has experience treating MPNs. Don’t be afraid to seek a second opinion. There are resources available to help you find a doctor or treatment facility that understands the unique needs of MPN survivors.
5 Find a support group.
Many MPN survivors and their families find that it’s helpful to talk about their disease with other survivors. Find an online or in-person support group to talk about MPNs with people who understand your concerns and emotions.
6 Find out about clinical trials.
Ongoing research is being conducted to find new treatments for MPNs. When new treatments are discovered, they must be tested to determine proper dosage, side effects, and effectiveness. By learning about clinical trials, you can uncover opportunities that advance MPN treatments and possibly benefit your personal prognosis. Consult your physician to discover if clinical trials are an advisable course of action for you.
7 Research your options.
Information is an important part of changing your MPN prognosis. The more you know, the more empowered you become in your fight against the disease.
♦ ♦ ♦ ♦ ♦
If you’ve been diagnosed with an MPN, it’s important to know that you’re not alone. The MPN Research Foundation provides comprehensive support for people with MPNs and their families. To learn more, visit MPNResearchFoundation.org.
Reprinted with permission from the MPN Research Foundation, mpnresearchfoundation.org
RX for a Good Night’s Sleep
Don’t sweep insomnia under the bed.
Effective treatments are available.
by Clare M. Sullivan BSN, MPH, OCN
Having trouble sleeping can be frustrating and isolating. It is also a common problem experienced by cancer survivors.
If you have difficulty falling asleep or staying asleep more than three times a week, for a month or longer, you may have insomnia. People with cancer are more likely to experience insomnia due to risk factors such as these:
⋄ Stress or anxiety surrounding the cancer experience
⋄ Cancer-related pain, headaches, nausea, or vomiting
⋄ Side effects from cancer medications, chemotherapy, or radiation
⋄ Changes in routine, such as an overnight stay at the hospital or frequent visits to an outpatient clinic
Often, cancer survivors don’t discuss insomnia with their healthcare team. The likely reason is that, on the surface, insomnia may not seem cancer related. However, if insomnia is ignored, other cancer-related side effects such as pain, anxiety, and fatigue can intensify.
Don’t sweep insomnia under the bed. Effective treatments are available. For starters, a board-certified sleep medicine physician or a behavioral sleep specialist can help by using a new advancement called cognitive behavior therapy for insomnia, or CBT-I. The treatment involves utilizing stress reduction and relaxation techniques that are effective in treating people with insomnia. Often, treatment combines CBT-I with sleep hygiene rituals and practices done at bedtime that help promote better sleep.
If you have difficulty falling asleep or staying asleep more than three times a week, for a month or longer, you may have insomnia.
Some people find that simply changing sleep behaviors and implementing bedtime rituals is enough to improve their sleep. Don’t wait until your next appointment; here are some things you can do to develop your own healthy sleep routine – starting tonight.
Improve your sleep behaviors.
Remove electronic devices from the bedroom, and avoid watching TV or working in the bedroom. Move any clocks out of view of your bed. Make sure your bedroom is free of as much light and noise as safely possible. Consider using earplugs or wearing a sleep mask. Avoid eating heavy, spicy, or sugary foods close to bedtime. Avoid smoking, and limit your caffeine intake. Avoid drinking alcohol, especially four to eight hours before bedtime.
Improve your sleep routine.
Go to bed and get up at the same time each day, seven days a week. Avoid long naps in the late afternoon. Exercise regularly, but not within three hours of your bedtime. Use your bed for sleep and sexual activity only. If you can’t fall asleep, get out of bed, leave the bedroom, and return when you are sleepy.
Consider relaxation strategies.
Talk about fears and worries early in the day, not at bedtime. Practice some gentle yoga, or take a warm bath before bed. Some studies suggest that regular exposure to late afternoon sun may release melatonin and help regulate your circadian rhythm. Just remember to wear sunscreen. Effective types of integrative therapies to try at bedtime include muscle relaxation, biofeedback, imagery, hypnosis, and thought stopping. Ask your cancer team about specialists who can help you learn more about these techniques.
Ask about medications.
Talk with your cancer care team about medications for treating your insomnia. Use caution because many sleep medications can be habit forming and should only be used for a short time. Some medications, if mixed with natural remedies, can have serious interactions. Before considering any over-the-counter products, dietary supplements, or herbs, talk with your cancer care team, as these can potentially interfere with your cancer treatments.
A good night’s sleep is critical for your cancer recovery. Don’t overlook the improvements in physical health and mental well-being that can come from getting consistent, quality sleep. Talk with your cancer care team about any sleep difficulties you are experiencing. They are there to help you.
♦ ♦ ♦ ♦ ♦
Clare Sullivan is a clinical manager of patient education at Dana-Farber Cancer Institute in Boston, MA.
To learn more about healthy sleep and sleep disorders, or to find an American Academy of Sleep Medicine–accredited sleep center in your area, visit SleepEducation.org.
Take a Hike
The unexpected advice that helped me learn
how to live after cancer
by Patti McCarthy
In September 2012, I was on top of life. My husband and I celebrated 25 years of marriage. Our three kids were in college, all doing well. I was awarded a top honor at my job. I couldn’t have been happier, more successful, or healthier.
Then on October 4, I got the call: “Patti, you have invasive breast cancer.”
I made my doctor spell out invasive, as if it was a foreign medical term I had never heard of. I was devastated. I got by on a wine and tears diet for weeks. I felt betrayed by good health and doing all the right things.
After the lumpectomy, my oncologist told me they found an additional tumor and some precancerous cells. My cancer was aggressive. I would need active treatments for a year. I felt powerless.
I am normally a positive, happy person. Happy is my family nickname! Everyone tried to help with the right words, but, honestly, I wanted to slug the next person who told me to be positive or offered up the “miracle cure” for cancer. I was positive I was going to beat cancer, but at the same time, I was also angry and anxious.
Honestly, I wanted to slug the next person who told me to be positive or offered up the “miracle cure” for cancer.
I did get one great bit of advice, though. That advice was to find a purpose, a passion to focus on. A passion that would let me live life, and not be swallowed up by cancer. For me that passion had always been hiking.
For years I wanted to hike the Pacific Crest Trail, a 2,650-mile trail from Mexico to Canada. My husband and I started small sections at a time, five months before I was diagnosed. Beginning with day hikes, we built our confidence to do overnights, eventually celebrating our aforementioned anniversary with a five-day hike. With this hike, we had accomplished 122 mountain miles of backpacking.
When I found out I had cancer, I thought my hiking days were over. However, after some time had passed and I had begun to come to grips with my diagnosis, I resolved to hike as much as I could.
My husband and I went on to hike an additional 244 miles. Those miles were hiked in between surgery, chemotherapy, radiation treatments, and Herceptin infusions. They were hiked while dealing with hair loss, relentless anxiety, low immunity and B12 levels, multiple infections (including shingles), and other stuff that would be TMI. At times, dizzy and exhausted, I’d think, Why am I here? Why do I insist on doing this?
What kept me going? My refusal to let this stupid disease defeat me.
After my last treatment, my husband and I took a celebration hike. The sun was shining. My iPod was blasting Zeppelin. I was in the moment. I couldn’t help but to sing – and sing loudly. I felt happy. I realized it had been too long since I’d felt that. It became apparent how healing this trail has been for me. It was a solace, a means of getting away and refocusing on what was important. It gave me strength. It helped me live my life, not cancer. For that I am forever grateful.
♦ ♦ ♦ ♦ ♦
Patti McCarthy is a breast cancer survivor living in Encinitas, CA. She has written a book about her experience, Hiking Cancer: 400 Days of Cancer and How I Hiked Through It.
When Words Heal
Writing Your Cancer Story
by Sharon A. Bray, EdD
Fifteen years ago, numb from treatment for early-stage breast cancer, I signed up for a weeklong writing workshop at the urging of a friend. While I looked forward to it, I had mixed emotions, and on the first day, I entered the classroom full of doubt and anxiety.
The first writing exercise was brief and unexpected. “Tell me something I can’t forget,” the workshop leader said. I stared at my notebook, mind blank as the page, settling on a childhood memory just to get something written. When the leader invited us to read aloud, however, I passed.
Gradually, I wrote more easily, but the word cancer never appeared in my notebook until the final class. Among the prompts offered on that last day, a single sentence chosen at random opened the door to my real story. I felt my skin prickle as I read the words from the slip of paper: “The hospital corridor was dimly lit …”
I began writing; words flowed from my pen. I couldn’t write fast enough as I remembered how I felt waiting in a small room for my first radiation treatment. That was over fifteen years ago, and it was the beginning of a new life chapter for me.
Now as I lead my own “Writing Through Cancer” workshop series, I often hear participants apologize for their writing attempts, saying, “I’m not really a writer.” But everyone can write. What I think is really being expressed by these participants is fear (much like I felt years ago during that first workshop), fear they have nothing to write about. Yet, as they soon discover, they do.
Writing helps us express our pain and suffering, helps us “unburden” ourselves of it.
In his book The Emperor of All Maladies: A Biography of Cancer, Siddhartha Mukherjee describes cancer patients as storytellers, narrators “of suffering” – travelers who have “visited the kingdom of the ill.” Writing helps us express our pain and suffering, helps us “unburden” ourselves of it. Expressing through writing these events we’ve experienced, and the feelings surrounding them, helps us heal.
At the first meeting of each of my writing workshops, I ask everyone to write about when they first heard the words “You have cancer.” Within seconds, pens and fingers move rapidly, words filling the page or laptop screen. As the participants read aloud what they’ve written, it’s often with trembling voices. Tears may be shed, but everyone is nodding in understanding.
Let’s Get Writing!
What are you waiting for? Here are a few writing prompts to help you get started:
Tell me something I can’t forget.
Describe the moment you heard the words “You have cancer.”
Finish this sentence: “Before cancer I was … ” Now begin a new page and write again, but this time, begin with the following: “After cancer I am … ”
For more writing prompts like these, visit Sharon’s blog, WritingThroughCancer.com, where she posts a new prompt each week.
Why write? It helps us to make sense of the chaos of emotions brought on by cancer and repair the damage cancer inflicts on our lives, our sense of self, our disrupted futures. We write to remember who we were, but we also write to discover who we are becoming. Research confirms that the most healing kind of writing takes the shape of a story. Stories are how we communicate. They are the language of community. Through shared story, isolation and loneliness are diminished. We discover we are not alone. Writing helps us gain perspective, helps us rediscover life and remember what truly matters.
I launched my first “Writing Through Cancer” series one year after I finished cancer treatment. I’ve never ceased to be inspired and humbled by the men and women who attend my workshops to write and share their stories of the cancer experience. Though joined by cancer, each person’s story is unique.
“I am the only one who can tell my story and say what it means,” Dorothy Allison writes in her memoir Two or Three Things I Know for Sure. Her words are wise and true. No one can tell your story or create meaning in it but you.
Do you want to write? Then ask yourself, “What is the story I want to tell? ” Your story matters. If you don’t tell it, who will?
♦ ♦ ♦ ♦ ♦
Dr. Sharon Bray is the author of two books on the health benefits of writing through cancer. She leads expressive writing groups for cancer survivors and teaches creative nonfiction for the UCLA Extension Writers’ Program.
The Language of Commitment
What Being There Really Means
by Val Walker, MS
In times of illness, we often need to depend on the help of others, and rely on them to follow through. But when someone backs out at the last minute or breaks a promise, even for understandable reasons, we are left worried, stranded, or vulnerable.
Most family members and friends genuinely care and want to help, but they sometimes fall into the trap of overpromising, or making vague, unclear commitments. Indeed, any of us, in a hurry or in the throes of offering our best, heartfelt intentions, can make generous, but unrealistic promises. Our plans can backfire when we find ourselves overextended, as we scramble to recover from curveballs coming our way and messy, awkward complications.
Most of us already know the basics of making solid commitments – but we all know, as human beings, life doesn’t work so neatly. I can honestly attest to my own habit of overpromising under the influence of powerful feelings like love, guilt, duty, or hope. I’m still learning to keep my word by using the right words in the first place when I make a promise – being mindful of what I say, and thinking before I open my mouth.
For over 20 years, as a rehabilitation counselor facilitating support groups for caregivers, as well as for people living with cancer, I’ve heard the good, the bad, and the infuriating about counting on other people. From their accounts, I’m convinced that even the smallest act of keeping a single promise is deeply reassuring during un- predictable and painful times. Reliable people are comforting because they don’t overpromise, but instead offer what they can realistically, truly deliver.
Reliable people are comforting because they don’t overpromise, but instead offer what they can realistically, truly deliver.
Thanks to the practical wisdom of hundreds of support group participants who have spoken out about keeping commitments, I’m offering a short list of their suggestions for making a solid, keepable promise.
The Four Elements of a Solid Commitment
1 Keep it specific
A promise or commitment should never be vague. It’s too difficult to follow through when something’s unclear.
Could I call you Monday night to check in?
I could text you this evening to see what the lab results are.
Call me if you need me.
Let me know how the labs turn out.
2 Keep it simple,
in small steps,
Offer help that is easy to remember and that is doable in a few steps, without getting too far ahead of yourself in the planning. When people are feeling very tired and weak with an illness, it might be too overwhelming to think much further ahead than a few days, or even one day. Regular check-ins and small steps along the way make it more manageable for all involved.
I can come by around 6:00 p.m. for the next three days.
I could stop by the pharmacy every Friday this month.
Not So Simple,
I’ll be there – all through your chemo. I promise.
As long as you need, I can always pick up your refills.
3 Keep it sincere,
which means being realistic and honest with yourself.
This means you may sometimes need to say no. You don’t want to overcommit and risk letting your friend down, or stretching yourself too thin.
Sincere and Realistic:
I’d like to wait and talk after dinner when I can really listen.
I can certainly do your laundry on Sundays, but weekdays are not good for me.
Overdoing It or Multitasking:
We can chat while I make dinner.
I can do all your cleaning and laundry.
4 Keep it proactive –
decision, not a
Avoid making a commitment in haste without thinking about it first. You can always get back with the person a little later with a well-informed decision. But you do need to make sure you follow up soon and don’t leave the person hanging.
Proactive, Thinking First:
I know I can help in some way, but first I’d like to think over the best way.
I’m sure I can help. I’ll call you in the morning with some ideas after I give this some thought.
No problem; I’ll make it happen.
I’ll do whatever you need.
♦ ♦ ♦ ♦ ♦
Val Walker, a rehabilitation counselor and grief consultant, is the author of The Art of Comforting: What to Say and Do for People in Distress. You can keep up with Val at ComfortingInAction.com.
Ways to Help Your Child Cope with Cancer in the Family
by Jennifer Gretzema, LLPC, NCC, SCL, CCLS
The diagnosis of cancer is often unexpected and daunting. However, many survivors and their families come to find a source of strength in the community they come to know, a sense of support in the guidance they receive, and a feeling of empowerment in the strides and discoveries made every day. These connections can be helpful not only to adults but to children as well. It is up to you to foster these connections with your child when someone in the family is diagnosed with cancer.
Developmentally, children have an egocentric view of the world. When someone in their life is diagnosed with cancer, they may feel they did something to cause it. They may also be dealing with silent worries about being able to catch a family member’s cancer. Adults in the child’s life can help assuage these fears by communicating with the child in an age-appropriate way.
After a cancer diagnosis in the family, a child’s questions and anxieties may feel all-consuming. A helpful metaphor to use when discussing feelings may be to equate these feelings with lava building up inside a volcano waiting to erupt. Teach them how deep breathing, sharing their feelings, and using art, music, and play to express themselves can help them calm the volcano inside.
Most children digest information best through hands-on, developmentally appropriate play.
Explaining Cancer Using Play
Most children digest information best through hands-on, developmentally appropriate play. For example, using a doll or stuffed animal, a child can role-play care of a central line (or some other aspect of treatment the adult is experiencing). You can ask medical staff for an infant-sized anesthesia mask, tubing for a central line, cleaning swabs, and dressings to aid in the role-play. What makes a child most anxious is that which is foreign and unknown. Sitting beside your child while they role-play and talking to them about cancer treatment will bring knowledge and comfort to you both.
As treatment progresses, people with cancer often begin to lose their hair. To prepare your child for this, you can talk about how cells are like building blocks in our bodies. Sometimes, these cells get sick. The chemotherapy medicine helps get rid of the sick cancer cells, but sometimes it gets confused and tells the healthy cells (such as the ones that build our hair) to go away too. Just make sure to draw the distinction between chemotherapy medicine and the medicine that a child takes for a cold, for example. Reassure your child that this won’t happen to them when they have to take medicine. You can also use the central line doll to role-play the hair loss – and regrowth – process. In fact, the doll can continue to be a supportive, educational tool for the child throughout the entire cancer process.
Establishing Routine in the Chaos of Cancer
Children thrive on predictability and consistency. Cancer may challenge their routine. Including children in making decisions about changes in routine that occur due to cancer will give them a sense of empowerment. For example, you can let them choose which relative to stay with if both parents are at the hospital. You may even want to record yourself reading a bedtime story for your child to play while you are in the hospital. This can provide a comforting ritual to your child, as well as serve as a point of connection between the two of you. You can also create a calendar so your child knows in advance when changes in the routine are going to occur. If possible, seek help from family members or friends to allow your child to continue their regular schedule and activities as much as possible. Establish a relationship with a school counselor or trusted teacher to help ensure your child is adjusting well at school.
A cancer diagnosis in the family can be overwhelming, especially for children. Partner with your community and support networks to provide a sense of comfort and connection for your child. Join your child in play, as this will allow them to process their thoughts about cancer and give you an opportunity to share your own. Recognize that resilience is made up of strong moments of triumph, as well as quieter moments of communion. Each of these holds power and significance.
♦ ♦ ♦ ♦ ♦
Jennifer Gretzema is a certified child life specialist at the University of Michigan C.S. Mott Children’s Hospital in Ann Arbor, MI. She works with pediatric hematology/oncology patients and their families to provide psychosocial support during treatment. She also has a private counseling practice, Connections Counseling of Michigan, in Brighton.
The Unwelcome Guest
by Katherine Easton, LCSW, OSW-C
When people think about the side effects of cancer treatment, physical effects like fatigue, hair loss, and nausea and vomiting are often what come to mind. However, cancer survivors are at risk of developing another rarely discussed, and far less visible, side-effect – depression. This unwelcome, and often unexpected, guest can even affect people who may normally have healthy coping skills.
In an effort to help combat cancer-related depression, the American College of Surgeons’ Commission on Cancer now requires community cancer centers to screen anyone undergoing cancer treatment for something doctors refer to as distress. Distress is an unpleasant emotional experience that may interfere with a person’s ability to cope effectively with cancer, its physical symptoms, and its treatment. Left unchecked, persistent distress can lead to depression. Most oncologists now actively assess and treat distress and depression as part of comprehensive cancer care.
What is depression?
Everyone feels low sometimes, but these feelings usually pass after a few days. When you have depression, the low feelings persist, and they can be intense. These low feelings hinder your ability to do simple, everyday activities for weeks at a time.
People who have been diagnosed with cancer may be at higher risk of developing depression for numerous reasons. During cancer treatment, you may experience increased feelings of fear or worry, along with other powerful emotions. In addition, many people have difficulty adjusting to the significant changes cancer brings about in their lives, their work, and their relationships.
Not all people experience depression in the same way. For some, it is experienced as a sad or “empty” feeling. Others may feel a sense of hopelessness or helplessness. And still others may experience more physical symptoms, such as fatigue, aches and pains, headaches, loss of appetite or an inability to sleep. For many, depression causes a loss of interest or pleasure in activities they once enjoyed.
What causes depression?
Different factors play a role in the risk of depression. The disorder tends to run in families. One of the reasons for this has to do with genes. Some genes increase the risk of depression, while others increase resilience (or the ability to recover from hardship) and protect against depression.
Experiences such as trauma or abuse during childhood and stress during adulthood can also raise your risk of depression. However, factors such as a warm family and healthy social connections can increase resilience, which may lower your risk of developing depression. Hormonal therapies used to treat some cancers also put people at higher risk of depression.
Many cancer survivors experience situational depression in response to their illness. Sometimes referred to as an adjustment disorder, situational depression is defined as a short-term condition in which a person has difficulty coping with or adjusting to a particular source of stress, such as a major life change, loss, or stressful event. A cancer diagnosis definitely fits that description. However, it’s important to note that some stressors or losses can trigger depression in one person but not another. Thus, while many cancer survivors do experience depression, not all people with cancer are depressed.
What should I do if I think I’m
Depression is a serious illness that needs treatment, as it may significantly affect your quality of life. A combination of antidepressant medications and psychotherapy is often the best approach to treating depression.
Psychotherapy, or “talk therapy,” may help by teaching you new ways of thinking and behaving. Your therapist may also work with you to change habits that may be contributing to your depression. Moreover, therapy can help you understand and work through difficult relationships or situations that may be causing your depression or making it worse.
Discussing your concerns about your depression is an important conversation to have with your oncologist. Your doctor may decide to prescribe an antidepressant and encourage you to meet with a behavioral health specialist, such as a licensed professional counselor or licensed clinical social worker, with experience treating individuals with cancer. In addition to professional help, you may also find that support groups, wellness classes, a balanced diet, and exercise may also help you manage your depression.
Living with cancer can be difficult, but that doesn’t mean you have to live with depression and sadness. Remember, depression is an unwelcome guest. Don’t let it have a seat at the table. Seek help for your depression, and take back control of your life.
♦ ♦ ♦ ♦ ♦
Katherine Easton is a licensed clinical social worker certified in oncology at Atlanta Cancer Care, affiliated with Northside Hospital Cancer Institute, in Atlanta, GA, where she provides clinical psycho-social support to individuals with cancer and their families.
Get Your Camera Ready!
Your National Cancer Survivors Day® photos could be featured in Coping magazine.
Five Tips for taking amazing photos of your Survivors Day celebration
Once again, Coping with Cancer magazine is featuring local NCSD events in the July/August 2016 issue. And your photos could be included – maybe even on the cover.
If you’re hosting an NCSD event this year, send the best digital photos of your event to Coping with Cancer magazine by June 13 to be considered for its official coverage of National Cancer Survivors Day®.
National Cancer Survivors Day® will be filled with special moments everyone will want to remember. And you’ll want to be sure to have a camera (or two, or three) on hand to document it all. Is your camera ready?
You don’t have to be a professional photographer to take amazing photos of your celebration. Just follow these 5 tips for capturing those unforgettable NCSD moments:
1. Take action shots. Pictures of people doing things are more interesting than photos of people just standing around. Instead of photographing your guests passively listening to a keynote speaker, try to capture those special moments of laughter or tears during the speech. You should also take photos of people participating in NCSD activities – like crossing a finish line, dancing, giving high fives, or creating artwork.
2. Look for candid moments. Candid shots of people caught up in the moment – sharing hugs, laughing, wiping away a tear – capture the spirit of the event much better than posed photos in front of the same background over and over again.
3. Photograph people together. When you photograph people together, it introduces a relationship into the shot. After all, National Cancer Survivors Day® is about bringing cancer survivors together to celebrate life.
4. Don’t be obvious. When people are aware of you taking photos of them, they may get nervous and tense up, or turn on the fake smiles and pose. In order to capture those coveted candid moments, you’ll have to be a little less obvious with the camera.
5. Take a LOT of photos. If you have a digital camera, you can click away without having to worry about setting up the perfect shot every time. Your camera’s burst function is perfect for this. Taking lots of photos increases your chances of getting that one perfect shot.
Pick out your best shots to share with Coping and follow these guidelines to prepare your entries:
WHAT TO SEND
- Format: Close up, candid shots are preferred. Front cover candidates should have a vertical format and space left at the top for the Coping logo. Inside coverage candidates can be vertical or horizontal.
- Photo Description: Provide a short description of each photo submitted; list people from left to right.
- Digital Camera: Set your camera for the highest possible resolution (quality). Submit via email; CD; or for large files, via FTP.
- Film Camera: Coping no longer accepts prints. Only digital photos will be considered.
- Event Information: Please provide the name of the event host (sponsor), event name, location (treatment center, park, etc.), city, and state. Also, provide your contact information, including your name, organization, phone, and email.
HOW TO SEND
- Overnight digital photos to: Coping NCSD Issue, 1107 Lakeview Drive, Suite C-2, Franklin, TN 37067.
- Mail digital photos to: Coping NCSD Issue, P.O. Box 682268, Franklin, TN 37068-2268.
- Call: (615) 790-2400
We’re excited about NCSD 2016, and we hope you are too. Join with other Coping readers in celebration and sharing this special day!
♦ ♦ ♦ ♦ ♦
Cook for Your Life
When you have cancer, cooking isn’t just about healthy eating.
by Ann Ogden Gaffney
I love to cook, and I live to eat. Two cancer diagnoses couldn’t put a dent in that, but they did get me thinking about food.
When you have cancer, cooking isn’t just about healthy eating; it is also about feelings, both physical and mental. Cancer treatment protocols have their ups and downs, bringing good days and bad, and although each day is different, a rhythm starts to build that allows you to predict when you’re going to feel your worst or be at your best. Good food can help you get through all of it. It can soothe, or it can excite. It can certainly make you feel human again.
During the often arduous cancer journey, cooking also gives you control. When cancer forced me to hand my body over to my medical team, I found that cooking for myself and my family gave me a positive path back into life after doctors: At least I could control the food I put into my body. Many of the people who come to my Cook for Your Life classes feel the same way. And cooking can bring a rush of instant gratification at a time when it feels as if you’re always waiting for something, whether for test results or CAT scan results, or your doctor, or simply for the grueling months of treatment to be over. Cooking a meal that gives you healthy deliciousness in minutes equals control over an important part of your life.
There are more than 15 million of us in the United States either living with cancer or having survived it. I want to help us all to eat better, stay well, fight cancer with our forks, and to cook for our lives.
are frequently told
what to eat for
but not shown how to prepare it.
Cancer survivors are frequently told what to eat for nutrition, but not shown how to prepare it. To fill this gap, I decided to write my own cookbook, Cook for Your Life, with the recipes labeled according to the health considerations cancer survivors must take into account when preparing meals. Here are a few tips from my book on what to cook for certain cancer-related nutrition concerns.
Fatigue is, sadly, a necessary evil of many treatment protocols. While there is no “magic” food to combat these feelings of exhaustion, try recipes that offer easy, comforting options for when you may be too tired to prepare a complex meal. Although sugary treats will pick you up temporarily, excess amounts of refined carbohydrates can increase feelings of lethargy once the initial burst of energy wears off, so the foods in this category should be lower in starches.
Easy to Swallow
A side effect of some chemo drugs is painful mouth sores and cankers. People undergoing radiation to the head or neck will also have to deal with severe mouth or throat soreness, and many find it difficult to eat at all. I would advise anyone in this situation to consult a registered dietitian. Recommended foods are those that are soft and smooth and low in acid, to minimize irritation. Food should be eaten or sipped in frequent small portions and served warm instead of piping hot. To make foods easier to swallow, add smooth, fatty foods like avocado to, say, a smoothie, and even unsalted butter to a soup.
Go for easy-on-the-stomach, bland-tasting, inoffensive foods and beverages: think bananas, white rice, applesauce, and plain toast.
A bland diet is made up of foods that are soft, not very spicy, and low in fat and fiber. This diet may be used to ease ulcers, heartburn, nausea, vomiting, diarrhea, and gas, or may be recommended after stomach or intestinal surgery. It may also be advisable to follow a moderately bland diet leading up to or following chemotherapy infusions, particularly if you’ve experienced digestive side effects in the past.
When you have
cancer, cooking isn’t just about healthy
it is also about feelings, both physical and mental.
A high-fiber diet is recommended to promote regular bowel habits, manage weight, and encourage general health. This diet may be particularly important for someone who is prone to constipation or is experiencing irregularity as a result of treatment. Twenty-five to thirty-five grams of fiber per day is thought to be ideal, but increase the fiber in your diet slowly; if you’re not used to it, it can cause intestinal discomfort, aka gas. As you add more dietary fiber, make sure to increase your fluid intake, too. It will help you avoid constipation.
Some medical centers recommend this diet (otherwise known as “low microbial” or “low bacteria”) if neutrophil (a type of white blood cell) levels get too low to adequately protect from infection. When white blood cells are low, microbes your body typically deals with easily could send you to the ER. A neutropenic diet is low in foods that are prone to containing bacteria, helping to keep you well. Neutropenic diet restrictions vary depending on white blood cell counts, so make sure you talk to your doctor for specifics. Usually, raw foods, sushi, and food from buffets, salad bars, and delis are off limits. Some medical centers also add probiotics (like yogurt) to this list, so it’s always best to ask. These no-nos may make you feel as if you can’t eat anything, but this isn’t so. There is still a lot of tasty, good food out there for you. (See sidebar for a delicious, neutropenic diet-friendly summer sauté.)
What I Cooked While on a
During treatment, my oncologist put me on an antimicrobial diet, which meant that I could not eat any raw or undercooked foods. This diet can feel like horrid deprivation. My doctor told me that raw fruits and berries, crunchy veggies, and salads were banned. Sushi, rare meat, and fish also were off the menu, as well as certain cheeses. I was also warned to be wary of commercially prepared foods, so I couldn’t rely on takeout from delis, or food from hot tables and buffets.
The restrictions sink in as soon as you realize just how much the forbidden foods were part your daily meals. I had the particular misery of being put on this diet in the summertime, so I was denied that delicious first taste of local strawberries, or the joy of biting into a juicy, ripe peach. My favorite salad greens were out of bounds, too. I wandered like a bald ghost through my favorite greenmarket, knowing that I couldn’t indulge. But then I focused on what I could do to have all the forbidden things I loved: I cooked them.
I made delicious chilled salads of lightly steamed summer vegetables or roasted root vegetables dressed in tangy vinaigrettes. I enjoyed wilted greens and herbs, drizzled with a little olive oil, at room temperature. I made compotes from soft summer fruits, which I chilled and ate on their own or froze into granitas or gelatos. No deprivation there.
The moral of this story? If you can’t make lemons into lemonade, make cherries into compote.
Prep Time: 30 minutes
Cook Time: 20 minutes
Serves 2 to 4
The taste of this dish lies in the cooking. Don’t crowd the pan. You want the green vegetables to sauté, not steam, so give them the room and the time to lightly brown and caramelize before you add the tomatoes. The sweetness that comes out of them is the key to this simple dish.
1 tablespoon olive oil
3 scallions, diced
1 stalk celery, finely diced
2 small zucchini or summer squash, deseeded and finely diced
Sea salt, to taste
1 ear corn, shucked and kernels stripped
1 ripe, medium beefsteak tomato or 2 ripe Roma tomatoes, diced
¼ cup torn basil leaves
1 to 2 teaspoons lemon juice
1. Heat the oil in a medium sauté pan over medium-high heat. Once it’s hot, add the scallions, celery, zucchini, and a sprinkle of sea salt. Cook, stirring occasionally, for 10 minutes, or until vegetables start
to soften and caramelize.
2. Add the corn kernels and cook stirring for 2 minutes, stirring all the while. Add the tomatoes and cook, stirring often for about 5 to 8 minutes, or until the tomatoes start to look saucy.
3. Add the basil leaves and lemon juice and mix to combine. Serve immediately.
* If you are on a neutropenic diet, cook the basil for 2 minutes before adding the lemon juice and eating.
♦ ♦ ♦ ♦ ♦
Ann Ogden Gaffney is the founder of Cook for Your Life, a cancer-fighting nutritional program that offers free hands-on cooking classes in person and online to cancer survivors. Ann is the author of the cookbook Cook for Your Life, from which this article is adapted. She is also a two-time cancer survivor.
Consult a registered dietitian about your nutritional needs, and get more recipes and cooking tips from Ann at CookForYourLife.org.
Reprinted by arrangement with Avery Books, a member of Penguin Group (USA) LLC, A Penguin Random House Company. Copyright © Ann Ogden Gaffney, 2015.
Putting Together the Pieces
by Cynthia Cox
The waiting room in the radiation center is quite stellar, and I should know. With my chemotherapy, surgery, and hormonal treatment, I’ve been in many different waiting rooms this year. However, this one is a little different from the rest.
When I go in for my first day of radiation, a woman is playing guitar and singing, which does wonders to calm my nerves. Lovely pieces of art hang on the walls, many of which were created by survivors, and big windows offer a brilliant view of a peaceful garden.
These all contribute to the waiting room’s ambiance, but I’ve found that what I enjoy most are the puzzles.
Spread out on a big table in the middle of the room, a puzzle is always in progress – elaborate puzzles with famous paintings, more simple ones depicting gorgeous landscapes, some with photographs of rural life. When one puzzle is completed, it’s replaced by another. Every person in the waiting room can contribute to the puzzle in the moments before they’re called back for treatment.
Each day, the puzzle progresses slowly toward completion, with various people putting in a few pieces here and there throughout the day. It’s exciting to watch the progress as I return each day for my treatment. The puzzle magically becomes more complete, as countless other unknown survivors have worked on it in my absence.
Although we have to find the pieces that fit our own individual puzzles, none of us can do this alone.
I feel happy when I notice someone else has found the missing piece I’ve been hunting for in vain. I feel a sense of pride in seeing the finished product, knowing it was a joint effort among all those receiving treatment.
While lying on the radiation table one morning, it occurrs to me that the puzzles are a metaphor. All survivors have this one puzzle in common – how to beat cancer – and we are all working on a solution. Although we have to find the pieces that fit our own individual puzzles, none of us can do this alone. We rely on small contributions from others to slowly progress toward recovery. Like the waiting room puzzles being completed by unknown contributors, many of the contributions to our health happen behind the scenes, dispersed by a panel of doctors or by unknown chemists in a lab.
In addition to this, much of our wellness can be attributed to small contributions from family and friends. For each person who brings a meal, offers a ride, or reaches out through a phone call, another piece of the puzzle is put in place. They’re all contributing to our healing and recovery.
As long as we each strive to find the missing pieces, a little at a time, we can reach a solution. We are not alone in this journey; many others are helping us along the way. This knowledge has helped me cope with my own frustrations and fears. When I pause to be grateful for the assistance of others, it helps me keep going, piecing together my cancer recovery, one puzzle piece at a time. With the help of others, I know I’ll survive!
♦ ♦ ♦ ♦ ♦
Cynthia Cox is a breast cancer survivor living in Corvallis, OR. She and her mother were both diagnosed with breast cancer one month apart; they now are both in remission.
Together Against Cancer
The Quality of Your Relationship Matters
by Wanda Garner, MS, MA
The doctor’s voice sounded muffled, as if it were coming down a long tunnel, while I sat with my sister-in-law as her husband’s proxy. His own cancer treatment and preparation for a stem cell transplant in another city kept him from going with her. I left the office in a fog from the shock a cancer diagnosis creates. Cancer happens to families, and it trumps everything.
A cancer diagnosis brings the threat of loss to each partner, and both are terrified. How do couples navigate this unfamiliar, scary terrain? Do they turn to each other and confide their fears? Or do they turn inward, trying to be “strong” in order to protect their partner? Unfortunately, the latter often prevails, and couples lose the opportunity to increase their emotional connection when they both may be feeling isolated and alone. But how do you turn to your partner and share vulnerable feelings when to do so leaves you feeling exposed?
It’s terrifying to risk vulnerability when your relationship already feels unsafe or disconnected due to the threat of cancer. It’s like being on the edge of a cliff and knowing you may jump, but also knowing there’s no soft place to land. The danger seems too great. Feelings are kept inside, or anger is displayed. And the result is greater and greater disconnection and aloneness.
Couples coping with cancer need a “safe haven” where they each will be heard and where their partner will respond with care, support, and reassurance. A safe-haven relationship is one where emotional connection is present; it’s one that serves as an “inner resource” helping couples cope better with stress and process fear.
How does a couple develop a safe-haven relationship? Some couples have learned to repair rifts in their relationship soon after they occur by talking from the heart about feelings stirred up in an argument. They share their universal needs to be seen, heard, and loved. However, couples who do not repair these rifts end up in infinite loops of conflict about finances, kids, or sexual intimacy and never get to the root of the problem, which is usually about the longing to be loved and respected by their partner.
When we are willing to talk from the heart about these longings, our partner can respond positively by drawing closer to us, thereby creating our longed-for connection. However, this closeness does not always happen after one conversation, as many couples have been in conflict for so long that neither partner trusts the other. For these couples, it will take time and repeated sharing to build the trust required for their partner to reach back when a heartfelt fear is shared. Building trust takes a great deal of work, and perhaps some professional counseling.
Couples need to take the risk to express their fears. They need to risk overturning the silence or the anger that hides their true emotions. Physically touching or holding each other is very powerful and can help make sharing fears easier.
For couples facing cancer together, it’s important to work on developing a safe-haven relationship. This kind of relationship will offer the cancer warrior major benefits, such as reduced depression and anxiety, a decreased sense of isolation, and a greater sense of control over life. When facing cancer together, the quality of your relationship does matter. To strengthen your bond, try having a L-O-V-E conversation with your partner. Listen with an open heart and mind, validate and acknowledge each other’s fears, and express your thoughts and feelings softly and simply.
You do not have to have all the answers; just listening, understanding, and being present are enough. You are all your partner needs.
Risk opening your heart, and allow your partner to do the same. A strong connection with your partner is like emotional oxygen. It’s a powerful nutrient for cancer warriors.
♦ ♦ ♦ ♦ ♦
Wanda Garner is a certified emotionally focused therapist and supervisor who leads couples workshops at the University of California, San Diego, Moores Cancer Center. For more information and workshop dates, visit her website, WandaGarner.com.
If you think your relationship might benefit from emotionally focused therapy, you can locate an EFT therapist near you by visiting the International Centre for Excellence in Emotionally Focused Therapy website, ICEEFT.com.
Men, Cancer, and Sexual Health
by Joseph B. Narus, DNP, GNP-BC, ANP
Incredible advances in cancer care are now allowing men to recover healthy and active lives after treatment. Still, cancer treatments can affect a man’s sexual function. This is especially true for prostate, colorectal, and bladder cancers, three of the most common cancers in men. The side effects of surgery, radiation, and chemotherapy for these and other types of cancer can interfere with your ability to achieve and maintain an erection, lessen your desire for sex, and affect your ability to have children.
Sex is a wonderful and fulfilling part of life. Therefore, comprehensive cancer recovery should also include recovery of sexual health. However, many men are reluctant to discuss sexual side effects with their doctors, and clinicians may not bring up the subject. It is important to talk to your doctor about your sexual health and discuss the potential sexual side effects of your cancer treatments.
A number of sexual side effects can occur as a result of cancer treatment, including the following:
- erectile dysfunction, or the inability to have or keep a rigid erection
- loss of sexual desire
- delayed, absent, or painful orgasm
- sexual incontinence, or urine leakage when you become aroused or have an orgasm
However, medications and devices are available that can help improve your sex life. Let’s take a closer look at these sexual side effects and discover some things you can do to treat or manage them.
Many men are reluctant to discuss sexual side effects with their doctors, and clinicians may not bring up the subject.
Medications and devices are available that can help improve your ability to get an erection. Your best choice should be based on your own personal satisfaction with the particular method, how it affects your quality of life, the risks and benefits of the treatment, and the cost of the treatment. FDA-approved interventions for erectile dysfunction include oral erectile medications, as well as penile vacuum devices, injections, suppositories, and implants. Your response to these interventions will depend on the cancer treatment you received, as well as how far along you are with your recovery.
Low Sexual Desire
When a testicle is removed or injured due to surgery, radiation, or chemotherapy, your testosterone level can be affected. Testosterone is the male hormone that influences your desire to have sex. Your testosterone levels can also decrease with cancer treatments that damage the pituitary gland. Testosterone replacement therapy with topical gels, injections, or pellets placed under the skin can improve these low levels and lead to increased sexual desire.
Delayed, absent, or painful orgasm caused by surgery to the genital or pelvic area or by chemotherapy is treatable. Although you will not ejaculate seminal fluid after prostate surgery or radiation therapy, you can still have the sensation of an orgasm. Don’t be embarrassed to discuss these orgasm changes with your doctor, as treatments are available that can help.
This side effect is common after pelvic cancer surgery to remove the prostate or bladder. There are two types:
♦ arousal incontinence – urine leakage that occurs as you are getting an erection
♦ orgasmic incontinence – urine leakage that occurs when you have an orgasm.
You and your partner may be surprised when sexual incontinence happens. However, rest assured that it can improve or completely stop as you recover. Practicing regular Kegel exercises (squeezing the pelvic floor muscles), as well as using a condom or a penis constriction ring during sex, can help limit urine loss during sex. It is also important to urinate before attempting sex and to limit caffeine and alcohol use, as these can worsen leakage. A surgical procedure implanting an artificial urinary sphincter is also an option if other treatments don’t help.
If you are currently experiencing cancer-related sexual dysfunction, don’t lose hope. A healthy sex life after cancer should be part of your full recovery. Make sure to talk to your cancer care team about how your cancer treatment will affect your sexual function and what can be done to manage the sexual side effects of treatment.
♦ ♦ ♦ ♦ ♦
Dr. Joseph Narus is a nurse practitioner in the Male Sexual and Reproductive Medicine Program at Memorial Sloan Kettering Cancer Center in New York, NY. He also manages the MSKCC Penile Rehabilitation Program, treating sexual dysfunction after cancer treatment. With a clinical and research focus on male sexual health following cancer treatment, Dr. Narus has authored and co-authored multiple peer-reviewed articles and abstracts on sexual health and cancer, and he regularly speaks at local and national conferences about this area of survivorship.
What Causes It and What You Can Do about It
by Arash Asher, MD
Until recently, the cognitive changes brought on by cancer treatment – often called chemo brain or chemo fog – were brushed under the rug. Many physicians believed they were simply a result of anxiety or distress and, therefore, not a real medical concern. We are now learning, however, that up to 75 percent of people treated for cancer do experience some form of cognitive symptoms due to the disease and its treatment.
Although chemo brain symptoms can vary quite a bit among individuals, some commonly reported cognitive effects include
- Word-finding difficulties
- An inability to multitask
- Short-term memory problems
- Difficulty concentrating or a short attention span
The truth is that chemo brain may not be the best term to describe cancer-related cognitive effects. Historically, it was assumed that chemotherapy was the cause of the problem, hence the term chemo brain. However, recent research suggests that, although chemotherapy may be a risk factor for developing these problems, many other factors may play a significant role. These include
- Radiation therapy
- Hormonal changes from antiestrogen drugs used to treat some types of breast cancer or androgen-suppression drugs used in treating prostate cancer
- Poor sleep
- Side effects from other medications that are often given to people undergoing treatment for cancer, including pain medications, some anti-nausea medications, and corticosteroids
- Severe stress, anxiety, or depression
In addition, many scientists now believe that it may not be the chemotherapy itself that causes cognitive changes (as most chemotherapy drugs can’t readily infiltrate the brain tissue). Instead, they hypothesize that cognitive changes are a result of the body’s reaction to the chemotherapy. Think about, for example, how you feel when you have the flu. Most people feel tired, a bit blue, achy … and foggy.
Up to 75 percent of people treated for cancer experience some form of mild cognitive impairment.
No one wants to study for a midterm when they are down with the flu. And the reason isn’t the flu virus itself, but rather the body’s response to the flu virus. When you have the flu, your body releases chemicals called inflammatory chemicals, or cytokines, that make you feel tired, achy, and foggy. It’s your body’s way of forcing you to rest.
In terms of how this relates to chemotherapy, one prevailing theory is that your body treats the chemo drugs like it would any foreign bug. Just like when you have the flu, when you undergo chemotherapy, your body produces cytokines. These chemicals make you feel tired and, you guessed it, foggy.
How to Cope
Whatever the cause of cancer-related cognitive changes, here are a few things you can do to manage them.
♦ Bide your time. Studies show that around 75 percent of survivors return to pre-cancer cognitive functioning within six to twelve months of finishing active treatment and require no intervention.
♦ Exercise. Recent evidence suggests that moderate aerobic exercise during or after chemotherapy can help reduce cancer-related cognitive symptoms. Exercise can also help combat fatigue and improve your mood, which both can affect cognitive functioning.
♦ Manage depression and anxiety. There is a tremendous amount of overlap between the symptoms of depression and anxiety and the symptoms of chemo brain. Talk to your doctor about ways to manage your anxiety and depression. Professional therapy, depression medications, and mind-body exercises can all be useful.
♦ Talk to your doctor. In order to rule out other possible causes of cognitive changes, your doctor should review all your medications to make sure none of them are contributing to your cognitive symptoms. You should also have some basic lab work done (such as thyroid testing and blood counts) to check for other medical conditions that can affect cognitive functioning.
♦ Sleep. Make sure you are doing what you can to guard your sleep. The correlative relationship between inadequate or poor quality sleep and cognitive challenges can’t be emphasized enough.
♦ Get organized. Keeping your workspace and living area more organized may help you better keep track of things. For example, choose specific places to store items such as your keys or glasses, and return them to the same spot.
♦ Don’t multitask. Try to focus on doing one thing at a time.
♦ Consider cognitive rehabilitation. Talk to your doctor about the possibility of using cognitive rehabilitation to help you manage your symptoms. Although more research is needed, some newer evidence does point to the benefits of cognitive rehabilitation programs (where available) for cancer survivors experiencing cancer-related cognitive dysfunction.
♦ ♦ ♦ ♦ ♦
Dr. Arash Asher is the director of Cancer Survivorship & Rehabilitation at the Samuel Oschin Comprehensive Cancer Institute at Cedars-Sinai Medical Center in Los Angeles, CA. Dr. Asher specializes in the nonpharmacologic management of pain, cancer-related fatigue, cognitive dysfunction, and neuropathy in cancer survivors.
National Cancer Survivors Day 2016: Communities to Celebrate Cancer Survivors, Raise Awareness on June 5
On Sunday, June 5, 2016, cancer survivors and supporters in communities around the world will gather to celebrate the 29th annual National Cancer Survivors Day® and raise awareness of the issues of cancer survivorship.
There are nearly 14.5 million people living with and beyond cancer in the U.S. today, and more than 32 million cancer survivors worldwide. On Sunday, June 5, 2016, communities around the world will gather to recognize these cancer survivors as part of the 29th annual National Cancer Survivors Day®.
National Cancer Survivors Day® is an annual worldwide Celebration of Life that is held on the first Sunday in June. It is the one day each year that people around the world come together to recognize the cancer survivors in their community, to raise awareness of the challenges these survivors face, and, most importantly, to celebrate life.
According to the National Cancer Survivors Day Foundation, administrator for the celebration, “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.”
“When most people hear the word ‘cancer,’ they automatically think the worst,” says Foundation spokesperson, Laura Shipp. “But the truth is that more people are living longer and better quality lives after cancer than ever before. National Cancer Survivors Day® is an opportunity for these cancer survivors – and those who support them – to come together and celebrate this new reality in cancer survivorship.
“But this is also a day where we want to bring attention to the hardships cancer survivors still face. These include not just physical side effects but also psychological, social, and emotional distress, as well as significant financial hardships. Our Foundation hopes that NCSD serves as a call to action for further research, more resources, and increased public awareness to improve quality of life for cancer survivors.”
Everyone knows someone who’s life has been touched by cancer. The National Cancer Survivors Day Foundation is encouraging all citizens to participate in their community’s event. To locate the one nearest you, check with your local cancer treatment center, hospital, or American Cancer Society office. Or you can host an event of your own using the resources available through the National Cancer Survivors Day® website, ncsd.org.
The nonprofit National Cancer Survivors Day Foundation provides free guidance, education, and networking resources and assistance to hundreds of hospitals, support groups, and other cancer-related organizations that host official National Cancer Survivors Day® events in their communities. The Foundation’s primary mission is to bring awareness to the issues of cancer survivorship in order to better the quality of life for cancer survivors.
As the number of cancer survivors continues to grow, it is becoming ever more important to address the unique needs of these survivors. Many face limited access to healthcare specialists, a lack of information about promising new treatments, inadequate or no insurance, difficulty finding employment, and psychosocial struggles. Once active treatment ends, cancer survivors still must cope with the long-term effects of cancer, which can include ongoing physical side effects as well as potentially devastating financial setbacks.
The National Cancer Survivors Day® Foundation, along with NCSD 2016 national sponsors and Amgen, Astellas, Bristol-Myers Squibb, and Coping with Cancer magazine, is encouraging a greater commitment to lessening the burden of cancer survivorship.
“Cancer survivors are now living much longer after diagnosis thanks to advances in modern medicine. And the strides researchers are making in cancer treatment are amazing to see,” says Shipp. “However, we need to do a better job of addressing the hardships cancer survivors face beyond treatment.”
Leading up to National Cancer Survivors Day®, the NCSD Foundation urges everyone to spread the message that there is life after cancer – and that’s something to celebrate – but we can still do more to lessen the burdens of cancer survivorship. The following are suggested posts for your social media sites:
On Facebook: There is life after cancer – it is beautiful, it is meaningful, and it is something to celebrate – but we can still do more to lessen the burden of cancer survivorship. Join us as we celebrate life and raise awareness on National Cancer Survivors Day, June 5. #NCSD2016
National Cancer Survivors Day® 2016 is sponsored nationally by Amgen, Astellas, Bristol-Myers Squibb, and Coping with Cancer magazine, with support from Genentech, Raquel Welch® Signature Wig Collection, and Teva Oncology.
About the Foundation
The nonprofit National Cancer Survivors Day Foundation, ncsd.org, provides free guidance, education, and support to hundreds of hospitals, support groups, and other cancer-related organizations that host National Cancer Survivors Day® events in their communities. The Foundation’s primary mission is to bring awareness to the issues of cancer survivorship in order to better the quality of life for cancer survivors.
About National Cancer Survivors Day®
National Cancer Survivors Day® is an annual, treasured Celebration of Life that is held in hundreds of communities nationwide, and around the world, on the first Sunday in June. It is a CELEBRATION for those who have survived, an INSPIRATION for those recently diagnosed, a gathering of SUPPORT for families, and an OUTREACH to the community. On National Cancer Survivors Day®, thousands gather across the globe to honor cancer survivors and to show the world that life after a cancer diagnosis can be fruitful, rewarding, and even inspiring.
It is a day for everyone, whether you're a cancer survivor, a family member, friend, or medical professional. This day provides an opportunity for all people living with a history of cancer – including America’s 14.5 million cancer survivors – to connect with each other, celebrate milestones, and recognize those who have supported them along the way. It is also a day to draw attention to the ongoing challenges of cancer survivorship in order to promote more resources, research, and survivor-friendly legislation to improve cancer survivors’ quality of life.
♦ ♦ ♦ ♦ ♦
Say YES to Your New Possibilities after Cancer
by Caitlin Glenn, MSW
When you’re diagnosed with cancer, your entire world is shaken. Your identity is altered, your priorities shift, and tremendous change occurs in almost every area of your life.
These changes can be anxiety provoking and, at times, frightening. But somewhere in the midst of these uncertainties, something beautiful happens – a space for newness and fresh ideas opens up.
Cancer has pushed you out of your comfort zone. Your life looks different now. And a rebuilding is about to take place. After what feels like the hundredth doctor’s appointment or chemotherapy infusion, you may find yourself craving forward movement in your life. You may begin to seek ways to reconstruct your identity, infusing your new life after cancer with beauty, meaning, and joy. This process is one of creativity – of learning new things, discovering who you are, and deciding what is important to you now.
Your cancer does not define you, but you can use your experience to grow as a person and to find new passions and interests.
Creativity can mean many things. It can mean expressing yourself through art, writing, music, or design. But it can also mean saying yes to new experiences. As humans, we tend to stick to what we know, to what is comfortable. But there is nothing comfortable or familiar about a cancer diagnosis.
You can choose to resist the changes cancer brings about – to cling wildly to the life you had before cancer (even though you know you can never really go back). Or you can accept the new possibilities that lie before you with a gentle openness to change.
If you allow yourself to say yes – to the yoga class, or the local art group, or the therapeutic writing clinic – you open more doors to a new, reconstructed identity. This is where you will find your new normal. When you open yourself up to new possibilities, beautiful things will happen.
Your cancer does not define you, but you can use your experience to grow as a person and to find new passions and interests. When you look at it this way, creativity is ultimately about self-discovery, about opening your eyes and your mind to a unique perspective. One that offers you an opportunity to rebuild from loss and embrace courage through creation.
♦ ♦ ♦ ♦ ♦
Caitlin Glenn is an oncology clinical social worker at Hoag Family Cancer Institute in Newport Beach, CA, where she works directly with cancer survivors and their families, as well as develops and facilitates supportive programs to increase cancer survivors’ quality of life, encourage creativity, and provide therapeutic outlets.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, January/February 2016.
What about a Support Group?
by Mary C. McCarthy, BSN, RN-BC
Support groups are frequently recommended for people who are facing a change or challenge in life. Groups of people gathering for information, help, and networking is nothing new. A cancer diagnosis often leads a person or a family to find a support group.
For over twenty years, I have facilitated support groups for people dealing with cancer, chronic obstructive pul- monary conditions, diabetes, an ostomy, and stroke. My role as a facilitator is to provide a comfortable forum for people to gather with peers. I am often asked, “What do people talk about in that group?” The answer is anything and everything participants wish to discuss and share. A group can be a safe place for people to give and receive emotional, informational, and practical support.
Emotional support involves being able to discuss issues without fear of privacy being compromised. What happens in the support group stays in the support group. Confidentiality is sacred.
People face a variety of emotions when dealing with a change in health. Often a group participant can help some-one “normalize” the emotional aspect of a situation. Whether the emotion is fear, anxiety, or feeling overwhelmed, it can be helpful to learn how others have dealt with similar emotions.
Whether the emotion is fear, anxiety, or feeling overwhelmed, it can be helpful to learn how others have dealt with similar emotions.
Being with people “who get it” can have benefits as well as disadvantages. The benefits can be shared strategies or methods for coping. Negative aspects of emotional sharing can be shouldering everyone’s problems without any dis- cussion of how to move forward in a healthy way or feeling ashamed that a particular emotion was identified and shared.
Informational support can come in a variety of ways in a group. The goal is to have reliable and evidence-based information on topics such as activity, diet, finances, relationships, returning to work, and coping with change. Groups are not a substitute for medical or psychological care. However, over time people become very knowledgeable about conditions, treatment, and self-care. A peer can often be very wise about an aspect of a situation that a group member may be in question or concerned about. Also, inviting a guest expert speaker can be a plus for the group to learn about a specific topic.
Practical support involves aspects of daily living. For example, clothing is a common topic in the different groups I have worked with. Women share ideas on the best style of blouse, shirt, or vest to wear after breast surgery. People with ostomies talk about pants, waistbands, underwear, and swimsuits. Discussions on head coverings are always lively and full of creative suggestions. Tips and problem solving on clothing are prime examples of participants dealing with day-to-day issues.
I have found that people who attend a support group have great courage and willingness to share and learn from others. It might be easier to sit at home and not engage with others versus going to a group. Meeting new people at a time of change can offer fresh and different perspectives. Gratitude for connecting with people who are on a similar path is an outcome that I have heard from many group participants.
As a group facilitator, my hope is that people leave the meetings feeling comforted even in a small way or learning helpful information. Support groups do not have to be pity parties. I see them as a gathering of brave people who wish to connect, share, and learn from others.
♦ ♦ ♦ ♦ ♦
Mary McCarthy is the patient education coordinator at Mercy Hospital in Iowa City, IA.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, January/February 2016.
You Can Choose What to Do
with Your Next Chapter.
No matter how much time we have, we can make the most of it – right here, right now.
by Beth A. Williams, CPC, ELI-MP
No matter where you are in your cancer journey, you can choose what the next chapter will look and feel like.
The day I learned I had brain cancer changed my life. Sometime between my brain surgery and a year of chemo, I had my first wake-up call: If not now, WHEN will I complete coach training to do what I love full time? Coach training was a great way to wrap up my year of chemo. I was focused on what I WANTED in my life, and that was to become an executive- and career-coach. In the process, I broke through many of my inner blocks and became better at silencing my inner critic. Fortunately, ongoing conscious attention and intention have helped me shift from being tormented by self-doubt to experiencing more joy and peace of mind, no matter what’s going on around me.
Surprisingly, my brain tumor became my launching pad for not only creating the fulfilling career I always longed for but also becoming the person I wanted to be. But it wasn’t until my brother called to tell me he was dying of cancer that I got my second wake-up call. I realized I wanted to live full out. In just a few short weeks, he showed me how.
Geoff was diagnosed with late-stage pancreatic cancer in August 2013 and given just weeks to live. And live he did, inviting friends and family to spend his last weeks with him. What a gift! He showed us that no matter how much time we have, we can make the most of it – right here, right now. Our family mem- bers and Geoff’s friends had one another for support and comfort when the feelings of pending loss welled up and spilled out.
Geoff chose how he was going to spend those last few weeks, and he lived them mostly on his own terms, despite the situation. He declined chemo treatments when he learned they wouldn’t improve his quality of life or longevity. He had returned to his job as a metalworker for a few days after his diagnosis, until the doctor advised him it wasn’t a good idea since he had massive blood clots in his lungs. He told me on the phone, “Screw the job. I’m just going to BE.”
Always the practical one, Geoff gave his siblings and close friends jobs to do to help with his immediate needs and later with memorial services. He and another brother, Bryan, planned a huge bonfire for what turned out to be Geoff’s last weekend on earth. Cousins and friends joined in, too, bringing food, lighting a pathway from the house to the bonfire using solar-powered garden lamps, sharing favorite memories, joking with Geoff, and getting him to the bonfire with medical equipment in tow. I’ve never felt more alive or grateful than during that time.
Geoff inspired me to refocus my life and my career-coaching practice. Now I help clients define and create the lives and the careers they want. He taught me that we do have choices, even when it seems we have none.
What will you choose to do with your next chapter?
♦ ♦ ♦ ♦ ♦
Beth Williams is an executive-, career-, and life-coach, as well as a brain cancer survivor. She created Your Flourishing Life Coaching to help cancer survivors figure out what’s next and learn how to live fearlessly, with purpose, passion and pres- ence. Beth also helps middle- and senior-level professionals and managers explore what nourishes their minds, bodies, and spirits; become even better leaders; reduce stress; and improve their work-life balance.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, January/February 2016.
What Cancer Survivors Need to Know about Lymphedema
Lymphedema is the build-up of fluid in soft body tissues. The condition occurs when lymph is not able to flow through the body the way that it should. When part of the lymph system is damaged or blocked, fluid cannot drain from nearby body tissues. Fluid builds up in the tissues and causes swelling. In cancer survivors, lymphedema is caused when the lymph system is damaged or blocked by infection, injury, cancer, removal of lymph nodes, radiation to the affected area, or scar tissue from radiation therapy or surgery.
Signs & Symptoms
Possible signs of lymphedema include swelling of the arms or legs. Talk to your doctor if you notice any of the following lymphedema signs or symptoms:
♦ Swelling of an arm or leg, which may include fingers and toes
♦ A full or heavy feeling in an arm or leg
♦ A tight feeling in the skin
♦ Trouble moving a joint in the arm or leg
♦ Thickening of the skin, with or without skin changes such as blisters or warts
♦ A feeling of tightness when wearing clothing, shoes, bracelets, watches, or rings
♦ Itching of the legs or toes
♦ A burning feeling in the legs
♦ Trouble sleeping
♦ Loss of hair
These symptoms may occur very slowly over time or more quickly if there is an infection or injury to the arm or leg. Daily activities and the ability to work or enjoy hobbies also may be affected by lymphedema.
Cancer and its treatment are risk factors for lymphedema.
It can occur after any cancer or treatment that affects the flow of lymph through the lymph nodes.
Cancer and its treatment are risk factors for lymphedema. It can occur after any cancer or treatment that affects the flow of lymph through the lymph nodes, such as removal of lymph nodes. It may develop within days or many years after treatment. However, most lymphedema develops within three years of surgery.
Risk factors for lymphedema include the following:
♦ Removal or radiation of lymph nodes in the underarm, groin, pelvis, or neck. The risk of lymphedema increases with the number of lymph nodes affected. There is less risk with the removal of only the sentinel lymph node (the first lymph node to receive lymphatic drainage from a tumor).
♦ Being overweight or obese
♦ Slow healing of the skin after surgery
♦ A tumor that affects or blocks the left lymph duct or lymph nodes or vessels in the neck, chest, underarm, pelvis, or abdomen
♦ Scar tissue in the lymph ducts under the collarbones, caused by surgery or radiation therapy
Lymphedema often occurs in breast cancer survivors who had all or part of their breast removed and axillary (underarm) lymph nodes removed. Lymphedema in the legs may occur after surgery for uterine cancer, prostate cancer, lymphoma, or melanoma. It may also occur with vulvar cancer or ovarian cancer.
If you’re at risk for lymphedema, taking preventive steps may keep lymphedema from developing. Talk to your doctor about what you can do to help prevent lymphedema.
If lymphedema has developed, these steps may keep it from getting worse:
◊ Tell your doctor right away if you notice symptoms of lymphedema. The chance of improving the condition is better if treatment begins early. Untreated lymphedema can lead to problems that cannot be reversed.
Keep skin and nails clean and cared for, to prevent infection. Bacteria can enter the body through a cut, scratch, insect bite, or other skin injury. Fluid that is trapped in body tissues by lymphedema makes it easy for bacteria to grow and cause infection. Look for signs of infection, such as redness, pain, swelling, heat, fever, or red streaks below the surface of the skin. Call your doctor right away if any of these signs appear. Careful skin and nail care can help prevent infection:
⇒ Use cream or lotion to keep the skin moist.
⇒ Treat small cuts or breaks in the skin with an antibacterial ointment.
⇒ Avoid needle sticks of any type into the arm or leg with lymphedema. This includes shots or blood tests.
⇒ Use a thimble for sewing.
⇒ Avoid testing bath or cooking water using the limb with lymphedema. There may be less feeling in the affected arm or leg, and skin might burn in scalding water.
⇒ Wear gloves when gardening and cooking.
⇒ Wear sunscreen and shoes when outdoors.
⇒ Cut toenails straight across. See a podiatrist as needed to prevent ingrown nails and infections.
⇒ Keep feet clean and dry, and wear cotton socks.
Avoid blocking the flow of fluids through the body. It is important to keep body fluids moving, especially through an affected limb or in areas where lymphedema may develop.
⇒ Do not cross your legs while sitting.
⇒ Change your sitting position at least every 30 minutes.
⇒ Wear only loose jewelry and clothes without tight bands or elastic.
⇒ Do not carry handbags on the arm with lymphedema.
⇒ Do not use a blood pressure cuff on the arm with lymphedema.
⇒ Do not use elastic bandages or stockings with tight bands.
◊ Keep blood from pooling in the affected limb. To do this, keep the limb with lymphedema raised higher than the heart when possible. Do not swing the limb quickly in circles or let the limb hang down. This makes blood and fluid collect in the lower part of the arm or leg. And do not apply heat to the limb.
Studies have shown that carefully controlled exercise is safe for people with lymphedema. Exercise does not increase the chance that lymphedema will develop in those who are at risk. In the past, those at risk for lymphedema were advised to avoid exercising the affected limb. Studies have now shown that slow, carefully controlled exercise is safe and may even help keep lymphedema from developing. Studies have also shown that, in breast cancer sur- vivors, upper-body exercise does not increase the risk that lymphedema will develop.
While damage to the lymph system cannot be repaired, treatment is given to control the swelling caused by lymphedema and keep other problems from developing or getting worse. Physical (non-drug) therapies are the standard treatment. Treatment may be a combination of several physical methods. The goal of these treatments is to help people with lymphedema continue with activities of daily living, to decrease pain, and to improve the ability to move and use the limb with lymphedema. Drugs are not usually used for long-term treatment of lymphedema.
Treatment of lymphedema may
include the following:
♦ Pressure garments
♦ Skin care
♦ Compression device
♦ Weight loss
♦ Laser therapy
♦ Massage therapy
When lymphedema is severe and does not get better with treatment, other problems may be the cause. Sometimes severe lymphedema does not get better with treatment, or it develops several years after surgery. If there is no known reason, doctors will try to find out if the problem is something other than the original cancer or cancer treatment, such as another tumor.
Lymphangiosarcoma is a rare, fast-growing cancer of the lymph vessels. It occurs in some breast cancer survivors, appearing about 10 years after mastectomy. Lymphangiosarcoma begins as purple lesions on the skin, which may be flat or raised. A CT scan or MRI is used to check for lymphangiosarcoma.
♦ ♦ ♦ ♦ ♦
Source: National Cancer Institute, cancer.gov
One Step at a Time
How I Went from Being Unable to Walk After Cancer to Running Marathons
by Matt Jones
On January 29, 2016, I crossed the finish line of my seventh marathon on my seventh continent. Just three days prior, I completed my sixth marathon on my sixth continent, Antarctica – yes, I ran a marathon in Antarctica.
But twelve years earlier, at age 25, I was relearning how to walk. Complications from acute myeloid leukemia had sent me into an unconscious state. When I came to, I had to relearn how to tie my shoes, how to read a paragraph, and how to walk. While relearning how to walk, I remember my dad saying to me, “Son, you can do it, one step at a time.”
Each of us has life-defining moments when our destiny intersects with fate and our lives are forever changed in unexpected ways. For me, one of those moments happened on September 11, 2002 – a day I will never forget.
It was my senior year of college, and I looked forward to graduating and going after my dreams. As I began the fall semester, I noticed something wasn’t right; I had a sore throat that would not go away, and I was sleeping up to 16 hours a day. During one 24-hour period, I slept for 23 of those hours. I thought I had mono. Never would I have guessed it was cancer.
Goal by goal, step by step, I learned how
to walk again.
Then I began to run.
After three months, three rounds of chemotherapy, and three hospital stays, I was in remission. Feeling like I had knocked cancer out, I drove around my hometown with the windows rolled down blasting the Rocky theme song, “Eye of the Tiger.”
Seven months later, I relapsed and was told that I needed a bone marrow transplant to survive. It was while waiting for a donor, as the cancer spread to the fluid in my brain, that I slipped into an unconscious state. Against all odds, I recovered.
The first thing I remember after coming out of my unconscious state was sitting on my hospital bed looking down at my shoes. My laces were untied, and I thought to myself that I should try to do something about that, but I couldn’t remember what to do or how. That’s when my dad walked over, reached down, and tied my shoes. Then, he and a physical therapist helped me to stand up. After placing my right arm around my dad’s shoulders and my left arm around the physical therapist’s, they picked up my left leg and put it in front of my right, and then picked up my right leg and put it in front of my left. One step at a time.
Matt’s Seven Marathons on Seven Continents
1. North America – San Diego
Rock ‘n’ Roll Marathon (2006 )
2. Europe – Rome Marathon (2010)
3. Asia – Tokyo Marathon (2012)
4. Australia – Perth City to Surf Marathon (2013)
5. Africa – Cape Town Marathon (2014)
6. Antarctica – White Continent Marathon (2016)
7. South America – Punta Arenas, Chile, Marathon (2016)
Even with their help, I was only able to walk five yards before becoming exhausted. The physical therapist got a wheelchair to take me back to my room.
As I lay in my hospital bed that afternoon, I visualized myself completing a marathon, a feat I was crazy to even dream of tackling after only being able to take a few assisted steps.
My first goal? Take one step by myself. After that, my goal became making it down the hospital hallway and back. Goal by goal, step by step, I learned how to walk again. Then I began to run. Two years and four months later, I completed the 2006 San Diego Rock ‘n’ Roll Marathon.
I’ve run six more marathons since then. However, the greatest finish line I have ever crossed was on Mother’s Day 2004, when I walked out of the hospital after a successful bone marrow transplant. I have been in remission ever since.
Looking back over my marathon with cancer, just like each physical marathon I’ve run since then, I came through it by taking one step at a time toward a goal I set out to achieve.
In life, it’s not about your circumstances, but the choice to keep moving forward one step at a time. Today, the ultimate victory for me is sharing my story and inspiring others through the marathons in their own lives. Just like my dad told me – that I could do it, one step at a time – you, too, can cross the finish line of any marathon that you are running.
♦ ♦ ♦ ♦ ♦
Matt Jones went from being a three-time cancer conqueror to completing seven marathons on seven continents and is now an inspirational and motivational leadership speaker and author. You can learn more about Matt at MatthewDJones.com.
Tools for Coping with Stress
When You or a Loved One Has Cancer
by William Penzer, PhD
Let me be blunt. I am seventy-three-and-a-half years old. In 2005, when my 31-year-old daughter was diagnosed with breast cancer, I came undone. I was flooded with stress and anxiety for the better part of a year. The aftershocks lasted a couple more. And I am a skilled psychologist who is used to helping people through difficult journeys. It was undeniably the very worst experience of my life.
The place I dub Cancerville packs a wallop like no place I’ve ever been and no experience I’ve ever had. Thank goodness our daughter is a strong survivor, enjoying raising the daughter her doctors predicted she would never conceive because of the harsh chemo she endured.
Hope springs eternal, but we need to be able to clear our minds to see past the fears and tears that can so easily block our vision, dampen our spirits, and wreak havoc on our thoughts. Here are 10 tools I used to try to stabilize the tidal wave of worries and pressures that flew at me like a fierce and raging tsunami:
I share this first because for me it was numero uno. Get yourself a six-pack of notepads and go at it. Say whatever you want in whatever voice fits your mood. What you write in your journal stays in your journal. I must have filled dozens of notepads, which thankfully now I can’t find. They were my scream in the night to vent my turbocharged emotions and curse the fates that hurt my daughter.
Cancer is no laughing matter, but laughing matters a great deal in Cancerville. Laugh at all the silliness that you encounter. Watch sitcoms and funny movies. Self-deprecating humor can help ease the tensions that surround and abound. The more you laugh, the less you will cry. Of that I am quite sure.
3. Autogenic Relaxation
For whatever reasons, tightening and relaxing each muscle group can help create calm, relaxed, alpha-based feelings for both body and mind. You can find many resources online that present this helpful tool. The more you practice, the more you build a relaxation muscle to counterbalance the anxiety muscle that just about all of us seem to unfortunately develop naturally.
The Cancerville focus can quickly become intense. Periodically take a breath and a break and do something that shuts down your cancer-focused mind and switches the channel to something lighter. As long as it’s not harmful or illegal, whatever distracts you is fine.
As the popularity of yoga has soared in recent years, so has the research showing its many health benefits for both cancer prevention and cancer recovery. Once the haven of aging hippies, yoga has become popular with the masses, and it is now offered in many cancer centers around the country. Check with your doctors to see which practices are safe for you.
6. Guided Imagery
Our minds have the unique ability to allow us to journey to pleasant places without leaving our homes. Take yourself to a peaceful, pleasant, and calming place as often as you like. Maybe it is visiting Grandma’s house in days gone by, walking along the beach, taking in a country scene, or really anyplace you would rather be than Cancerville. You may be stuck there for the moment physically, but you can mentally transport yourself to other places from time to time.
Use your mind to envision a positive moment in the future. Enjoy a mental cruise vacation, or picture yourself helping others cope better with cancer. See yourself getting past this difficult time and using your experience to grow, while also imagining the good things that may be soon to come. Picturing yourself in that happy space can help to lighten your load.
Though people often like to joke about how meditation is just a bunch of sitting around doing nothing, it truly is a lovely way to relax. Focus- ing on your breathing can help you detach from your world, get out of Cancerville for a while, and find peace of mind.
Writing prose or poems, drawing, painting, sculpting, and other creative endeavors can help unleash your emotions while distracting you in an almost meditative way. Please don’t say, “I’m not good at that kind of stuff.” No one is grading you. A poet laureate I will never be, but during difficult times, I find it helpful to write poems.
Though mindfulness has become the buzzword of the day, it really is a simple, but powerful, tool that helps us relax and de-stress. All it requires is that you focus on inner sensations, or outer sounds and images. For example, how does the soap feel on your body when you shower, and what feelings occur on your skin when you rinse? How does the music coming from your headphones sound, and how do those headphones feel on your head or in your ears? Chew your food slowly and pay attention to the feelings in your mouth and on your tongue. Focusing on the stimuli that surround you can help you leave your worrisome world for just a bit and tune in to the little things we often neglect.
When you are dealing with cancer as a patient (my term is survivor) or as a caregiver (my term is heart and soul giver), leaving your Cancerville world for just a bit can be very helpful in maintaining your balance. Try any or all of the tools above to see what works best for you, and then stay with it throughout your Cancerville journey.
♦ ♦ ♦ ♦ ♦
Dr. William Penzer is a psychologist in private practice in Ft. Lauderdale, FL, and a frequent speaker at cancer-related conferences. He has written three books and numerous articles to help people cope better with cancer.
To learn more about Dr. Penzer and his work, visit cancerville.com. You can also download audio samples of autogenic relaxation, guided imagery, and meditation practices.
Supporting Your Wife through Cancer
by Rene Barrat-Gordon, LISW-S, ACSW
When your wife is diagnosed with cancer, you may find yourself suddenly thrust into a new role as caregiver. As her spouse, you must learn how to support her both emotionally and practically. But how can you best help your wife through cancer while also getting the support you need as a caregiver?
Offer emotional support.
Try to be as nonjudgmental as you can toward your wife’s fears and emotions while also acknowledging your own feelings. Don’t minimize her feelings by saying something like, “Don’t worry, you just have breast cancer. Everything will be fine.” Anyone with cancer fears the worst, even if the prognosis is good. If you don’t know what to say, just remain quiet and listen.
It’s OK to cry in front of her. Even though she is dealing with cancer, your wife still wants to know what you’re feeling. Sharing your emotions with her sends a message that she can also share with you, and that you are in this together.
Even though she is dealing with cancer,
your wife still wants to know what you’re feeling.
If your wife will be losing her hair during chemotherapy and she asks you to go with her to pick out a wig, be honest with your opinions, or suggest a friend who has better taste than you do. Let your wife know that she is still beautiful and that you love her, but don’t make obviously unrealistic claims. She’ll see right through it.
It’s also important to be honest about intimacy and your sexual feelings. I once counseled a husband who avoided sexual intimacy with his wife because he didn’t want to put any extra burden on her. While he thought he was being helpful, it ended up making his wife feel that he no longer found her attractive. Once they talked, the husband realized his wife still needed intimacy, but she had more energy for it at certain times of the day than at others.
If you, as a spouse, aren’t sure what your wife needs, ask. Be honest, and let her know that you can’t read her mind.
Accept offers of help.
During your wife’s cancer treatment, people may offer help with anything from giving rides to chemo treatments, to cooking meals, to taking care of your children. Talk to your wife about what would be helpful for both of you. Ask her what she is comfortable accepting help with. Is she OK with you responding to others on her behalf? What information is she comfortable with you sharing in her absence? Make a plan for asking for and accepting help from others that works for both of you.
Let go of the need to control everything.
As a spouse, you may want to take control and “fix” the situation. But you need to let your wife take the lead. Remember, it is her body and her health, and she is the one in charge. Before jumping in, ask her what areas she is comfortable with you handling as her spouse. For example, is she OK with you asking the doctor questions, or would she rather you just take notes and let her do the talking?
When one partner is going through cancer treatment, roles may be changed. Try to maintain as much normalcy as possible. If your wife wants to work, clean, shop, take care of the kids, or exercise, don’t tell her she needs to stay in bed and rest. Her doctor should be the one who sets limits on her activities. Try not to “smother mother” her.
However, that doesn’t mean you can’t pitch in and help out in areas that were once her domain. Cancer-related fatigue is on a completely different level than simply being tired, and your wife may not be up for all the duties she once took on. Ask her what you can do to help. And if you see a big laundry basket sitting at the bottom of the stairs, go ahead and carry it up.
Take time to care for yourself.
As a spouse and caregiver, you cannot effectively support your wife emotionally or help take care of her practical needs if you are not also taking good care of yourself. You need to take time to exercise, eat well, get enough rest, and have your own support system, even if that just means finding a good friend you can confide in. Yes, caring for your wife is important, but so is caring for yourself. You shouldn’t feel guilty when you take some time to look after your own needs.
♦ ♦ ♦ ♦ ♦
Rene Barrat-Gordon is an oncology social worker in the Breast Cancer Program at the Cleveland Clinic’s Taussig Cancer Institute in Cleveland, OH.