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.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, September/October 2016.
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.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, September/October 2016.
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.
♦ ♦ ♦ ♦ ♦
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.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, September/October 2016.
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.
♦ ♦ ♦ ♦ ♦
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.
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.
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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.
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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.
♦ ♦ ♦ ♦ ♦
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.
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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.
♦ ♦ ♦ ♦ ♦
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!
♦ ♦ ♦ ♦ ♦
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.
♦ ♦ ♦ ♦ ♦
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.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, March/April 2016.
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.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, March/April 2016.
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.
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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.
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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.
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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?
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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.
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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.
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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.
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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.
After Cancer, Looking Forward Gratefully
by Amy Lynn Dee, EdD
How did this happen to me? I followed all the rules, consumed healthy food, exercised regularly, got routine check-ups, went to church, volunteered, and generally felt vigorous and well. Still, cancer marched in and made itself a home in my lymphatic system.
The last line of my patient appointment summary from the day I was diagnosed with lymphoma reads, “She is stunned.” Yes, I was utterly dumbfounded when I was told I had cancer and thus faced the challenge of both becoming “un-stunned” and reconciling myself to a new identity as a “person with cancer.” Moving from stupefied disbelief to a focused acceptance of this unlucky diagnosis required deep reflection, and along the way, I stopped viewing myself as just a patient and became a true survivor.
Having grown weary of cancer invading my every thinking moment in the weeks following my diagnosis, I decided to defy this ugly disease, and I made some fundamental decisions that allowed me to get through the next several months of chemotherapy. Deciding how I was going to cope with cancer began with the belief that it would all be OK in the end, no matter what happened. There was so much about cancer outside of my control that I had to concentrate on those things over which I actually had some power.
I gave up all attempts
at becoming an amateur oncologist
by way of the Internet.
With or without cancer, we cannot control how many years, months, weeks, days, or minutes we have left. We can only control our outlook and actions in the moment in which we currently live. While I remain angry that cancer came, I have accepted it as a part of my life, and I now rely on three decisions I made early on that influence my outlook and allow me to make the most of every day.
Before I could move forward with my treatment, I decided I had to trust my medical team. This may seem uncomplicated on the surface, but when you’ve lived in a family with enough medical background to make the rare surgical and diagnostic blunders part of casual conversation, the tendency to second-guess health professionals becomes fixed at an early age. However, I now choose to walk a different path and trust my doctor and nurses with my life. While I continue to ask questions at every medical appointment, I know I can’t nurture a misguided illusion that I’m a medical expert, or that I can become one in a few months. This decision meant that I gave up all attempts at becoming an amateur oncologist by way of the Internet.
Online searches did nothing but cause stress during the early stage of my illness, and I knew if I was to remain emotionally healthy during treatment, I had to have confidence in my medical team. I felt like I was getting the best care available for my type of cancer, so giving up Google allowed me to focus on remaining positive, and I was able to stop worrying about all the conflicting information out there on the Web. I realized that a few minutes checking on a possible treatment option could quickly turn into wasted hours and increased anxiety. And although research can provide a starting place for conversations with your doctor, I found that most research available to the general public examines cancer at a bird’s eye view, and the specifics of your cancer, along with your medical history, can profoundly affect general statistics and outcomes.
My second decision was to face cancer directly – plainly and boldly. I immediately shared my diagnosis with my personal and professional circles. Some survivors prefer to keep health issues private, but cancer was too big for me to hide from, so hiding simply was not allowed. I wanted others to feel comfortable comparing my story against theirs or that of a loved one. I also wanted people to feel free to ask me about cancer. Conversation can provide a bit of catharsis, so I didn’t see talking about my cancer as a negative thing.
I will never give cancer the status of calling it a blessing, but I will admit that it has increased my appreciation for things I once took for granted.
Facing cancer head-on also meant that I chose not to hide my shiny bald scalp. I wore hats outside when it was cold, but I attended meetings, taught classes, went to church, and shopped without a head covering. While I occasionally felt the stares of small children, and sometimes even very large children in their forties, fifties, and sixties, the decision to expose my “cancer head” was not a difficult one for me, mainly because I had surrounded myself with good people who were encouraging and supportive. I learned that the definition of beauty should never depend upon something so trivial as hair.
Ultimately, I wanted people to know that cancer does not discriminate: it walks among us, it is unattractive and challenging, and it is life changing. Cancer can happen to anyone, and it happens far too often.
While misery was certainly an option, I decided instead to spend my time healing with as much gratitude and joy as possible. This third decision kept me from hiding under a blanket and crying all day. I’m not saying there were no tears along the way. Believe me; I shed plenty of tears in anger for life interrupted, grief for changed plans, and fear of the unknown. Crying is a natural response. But it is not always helpful or productive if it does not lead to resolve.
When I decided that living despondently meant cancer wins, I thought about the one thing I am most grateful for – the people in my life who love and support me – and I knew that joyful living could very well transform the months of treatment from being filled with depression to being full of health and wellness. This mindset helped me see beyond the fear and to the conviction that cancer is not the end. Far beyond remission or the statistics and outcomes of treatment, I would be OK, no matter how many years, months, weeks, days, or minutes I have left.
How did this happen to me? There are some questions for which there are no answers. And instead of trying to figure it out, I consider how I might become a better person in the aftermath of cancer treatment. I will never give cancer the status of calling it a blessing, but I will admit that it has increased my appreciation for things I once took for granted. Life is a little bit slower now, wrinkled clothes don’t bother me, hugs are a little longer, and I now see good hair days as way overrated. Listening has become genuinely hearing, acquiring experiences means more than accumulating material goods, and kindness matters the most of all.
Cancer happened to me, and I decided to fight back with trust, boldness, and gratitude. Now I am a survivor looking forward to the years ahead … gratefully.
♦ ♦ ♦ ♦ ♦
Dr. Amy Lynn Dee is an associate professor at George Fox University in Newberg, OR, where she teaches in the Master of Arts in Teaching program and serves as the director of Accreditation and Assessment in the University’s College of Education. Amy lives in Oregon with her husband of 35 years and has two grown children.
Eat Well. Be Well.
Choosing Healthy Eating during Cancer Treatment
by Julie Lanford, MPH, RD, CSO, LDN
Having cancer can change how you see the world. You want to make the most of each day, you are more grateful for family and friends, and you ask yourself, “What can I do to be healthy during and after treatment?”
A healthy lifestyle can improve your quality of life and optimize survivorship. The foods you choose to eat, or are able to eat, are key parts of your lifestyle. Healthy nutrition choices can help keep you strong during treatment, reduce the risk of your cancer coming back, and lower your risk of other diseases.
The Relationship between Cancer & Nutrition
There are no guarantees when it comes to nutrition and cancer, but research shows that choosing healthy foods and being active can put the odds in our favor. Eating a variety of fruits, vegetables, whole grains, beans, and nuts means that you are getting antioxidants, vitamins, minerals, and phytochemicals (plant nutrients) that your body needs each day.
The nutrients you get from food can help ease cancer-related side effects, reduce cell damage, boost your immune system, and generally keep your body healthy. As much as possible, you should get your nutrients from food, not from pills. That’s how our bodies prefer it.
Nutrition Challenges during
Many people experience eating challenges at some point during treatment. However, it’s important to get adequate nutrition, even when facing these types of challenges. Good nutrition during treatment can help
♦ regulate your weight and preserve your energy
♦ protect your nutrient levels
♦ lessen cancer-related side effects
♦ improve your quality of life
♦ support your immune system
Most important is to make sure you get enough calories and protein to support your body’s needs. Weight loss and muscle loss are often the first signs of not eating enough. This will often result in feelings of weakness and fatigue.
MyPlate is the current nutrition guide published by the U.S. Department of Agriculture.
Eating the MyPlate way means filling half your plate with vegetables and fruits and the other half with lean protein and grains, as well as incorporating some type of dairy into your diet.
Visit ChooseMyPlate.gov to learn more.
If weight loss or poor appetite is a concern, focus on eating small high-calorie, high-protein foods every two to three hours. Foods like peanut butter, nuts or seeds, beans, smoothies, cheese, yogurt, and whole grains can give you calories and protein, in addition to other nutrients.
A Healthy Diet
If you are not having difficulty with weight loss or poor appetite, this is the perfect time to make nutritious changes to your diet. Across the board, a plant-based diet is the clear recommendation for cancer survivors. However, many people aren’t sure what plant-based eating really means.
Plant-based eating simply means that at least two-thirds of your plate is covered with plant foods. Yes, you can still eat meat if you want! But even if you choose to include meat in your diet, you will still want to eat plant proteins each day. (See sidebar for tips on incorporating plant proteins into your diet.)
If you use the USDA My Plate, the AICR New American Plate, or the Harvard Healthy Eating Plate (all available online) as a guide, you will notice they all have a focus on fruits, vegetables, whole grains, beans, and nuts. While you don’t have to become vegetarian to improve your diet, eating plenty of plant foods and only a small amount of animal foods is a healthy pattern that that will help give your body energy and protect against disease.
Your Take-Home Message
Sometimes all the nutrition advice being passed around can seem overwhelming. Try to focus on the things we know for sure will help you stay strong during cancer treatment and heal quickly afterwards. Each day, choose
♦ 4-5 cups of fruits and vegetables
♦ 100% whole grains
♦ 30-45 grams of fiber
♦ 1 or more servings of plant protein (such as beans, nuts, and seeds)
♦ Spices and herbs, instead of salt and sugar, to flavor food
♦ Water, unsweetened tea, and coffee to stay hydrated
And remember what mom always said: Eat your vegetables!
♦ ♦ ♦ ♦ ♦
Julie Lanford is a registered dietitian and the wellness director for Cancer Services, Inc., a nonprofit support agency in Winston- Salem, NC. She has been working with people facing cancer for over 10 years. Her survivor-inspired blog can be found at CancerDietitian.com. You can also connect with Julie on Facebook, Twitter, Pinterest, Instagram, and YouTube. Find her @CancerDietitian.
Take Control of Worry
by Sage Bolte, PhD, LCSW, OSW-C, CST, and Drucilla Brethwaite, MSW, LCSW, OSW-C
Lauren, a devoted mom of two young children, committed partner, competent professional, diagnosed with metastatic breast cancer, arrived in the office pleading, “I don’t want to feel like this anymore. This worry is taking too much of my time.” When faced with a cancer diagnosis, even the most resilient individuals can find themselves experiencing strong emotions resulting from distressing thoughts unlike any they have ever experienced before.
The worries and fears that creep into the mind can be difficult to control, and they can take up a lot of real estate in your brain. While you can’t eliminate these thoughts, you can get them under control.
Step One: Understanding Worry
Having worries and fears is common after a cancer diagnosis. Cancer is often an unpredictable experience. It can bring about many changes in your life, and, as humans, we typically don’t react well when changes in our circumstances are beyond our control. Moreover, the side effects of cancer treatment, such as fatigue or pain, can lower your threshold for tolerating distressing thoughts and lessen your ability to problem solve.
Unfortunately, your usual life stressors don’t get put on hold when you are diagnosed with cancer. These daily stressors can amplify your worries and fears. Well-intended questions and suggestions from loved ones can also contribute to worrisome thoughts.
When you begin to feel anxious, take three slow deep breaths. Controlled breathing can help activate the relaxation response.
It’s helpful to understand that your thoughts are often automatic. That is, you don’t really have much control over what thoughts creep up in your mind. Moreover, if the brain perceives a distressing thought as an actual threat, stress hormones immediately begin to flow, which is another thing you don’t have much control over. The brain acts quickly to assess a threat, and, therefore, the brain often gets it wrong, assigning real danger to what is at the moment, a distressing or scary thought.
Step Two: Your Brain Needs a Break – Give It Something to Do Besides Worry
Recognize that automatic thoughts of worry and fear are going to come. As you identify them, without judgment, notice how they make you feel. Ask yourself questions such as What am I thinking? What is the effect of continuing to have this thought? What could happen if I changed my thinking? What should I do next?
Anxious thoughts increase tension. However, positive thoughts promote a sense of well-being. To promote positive thinking, try some mindfulness or relaxation techniques. They really do work. Acknowledge that it’s okay to feel anxious or fearful at times. Then find an affirmation or mantra that works for you: I trust in life, or I am strong and competent. Repeating affirming thoughts can bring you a sense of calm.
Ground yourself. When you begin to feel anxious, take three slow deep breaths. Controlled breathing can help activate the relaxation response.
Train yourself to stay present; don’t get ahead of yourself. Ask yourself, At this moment, what is currently happening? Focus only on the current situation. Don’t jump to step 27. If you don’t quite understand something concerning your disease or your treatment, ask for more information. It is surprising how clarity alone can decrease fear.
Develop a meditation practice, use guided imagery, or visualize a safe place within your mind. All of these can activate the thinking part of the brain and decrease activity in the emotional part of the brain, which is where worry and anxiety originate. A spiritual practice can also help bring you comfort and peace.
It’s important to connect with others for support and to communicate your needs. Connect with people who ground you, those who can be with you in your fear, support you, and remind you of strategies you have found useful in controlling it. Then tell the people in your support network what they can do to help you, whether it’s sending you funny YouTube videos or telling you about their recent trip, a movie they saw, or a book they read.
Choose your connections (and ways of connecting) wisely. Excessive social media, email, and text messages may create worry. As can message boards and certain websites. Avoid websites that cause you distress, and don’t respond to distressing emails or messages. To protect yourself, consider blocking or setting boundaries with websites or people that intensify your distress. If you want, you can reconnect when you are in a better place.
Prioritize where you want to spend your mental and emotional energy. Identifying what’s most important to you and setting small achievable goals can help you feel more in control.
Do things that are calming, or that are just plain fun. Listen to music, dance, laugh, meet a friend for coffee. Participating in activities that promote positive emotions will help limit the perception that cancer is taking over your life.
It may seem overwhelming at first, but you can get worry under control. For starters, choose three of the techniques above to really focus on, and then reassess where you are each week. If something isn’t working for you, try something else. With practice and with time, you should see a noticeable difference in the frequency and intensity of your worries and fears. But remember, always tell your doctor if you feel your worry or anxiety is too overwhelming or is interfering with your everyday life. It is OK to ask for help if you need it.
♦ ♦ ♦ ♦ ♦
Dr. Sage Bolte, a licensed clinical social worker, is the executive director of Psychosocial Programs for the Inova Dwight and Martha Schar Cancer Institute and the director of Inova’s Life with Cancer program, which provides cancer survivors with information, support, and resources. Drucilla Brethwaite is a licensed clinical social worker and manager of Oncology Navigation and Counseling at the Life with Cancer program.
Embracing the Positive Side of Cancer
by Susan M. Krauss
Four years ago, I was diagnosed with triple-negative breast cancer. How vividly I remember the negatives: the interminable delays in getting in to see a doctor, the waiting for test results, the waiting in doctors’ offices, the waiting to feel better. Then there were the side effects from chemo: mouth sores, fatigue, diarrhea, constipation, allergic reactions. And the post-treatment period brought worries about my future: What will my life look like now? Will my cancer recur? Where might it metastasize?
There were so many dark, dark days. However, not all the days were dark. Yes, cancer forever changes you. But sometimes it changes you in ways that are good.
Before my diagnosis, I was a recently retired high school English teacher, finally able to spend time with my grandchildren. I had reached my comfort zone. Life was happy.
Then cancer happened, and I often found myself in the company of strangers, regularly surrounded by unfamiliar doctors, chemo nurses, technicians, as well as fellow comrades in the infusion room who were in various stages of hair loss and fatigue. I remember sitting there one day, staring mostly, taking it all in, and feeling confused and frightened, until the lady sitting next to me struck up a conversation. This impromptu conversation ended up lasting about sixteen hours, spread out over four chemo sessions.
I went over to her and took her hand, a perfect stranger. “Don’t cry,” I said. “This is a place where good things happen, where you meet some wonderful people who will help you. Try not to be afraid. You’ll see. It’s not as bad as you feared.”
The woman was there to support her daughter who had stage IV colon cancer. A cancer survivor herself, she offered me suggestions for tasty recipes that would make my mouth sores feel better. She knew the rash on my arm was an allergic reaction and called the nurse over to have a look. I learned all about her family history; her father, brother, sister, and two children were all cancer survivors. Her late husband had battled cancer too. But he passed twenty years before I met her.
She seemed immune to bad news, calm and pragmatic. “When a problem arises, we just deal with it,” she said. She was so open about her life. I found her struggle and her attitude inspiring.
At my fifth session, she wasn’t there. I was seated in an outside chair near the door. After a while, a man came into the infusion room with an elderly woman; they were led in by a nurse who was showing them around the facility. They stopped near my chair, and the woman started crying. Everyone looked around in embarrassed silence. I went over to her and took her hand, a perfect stranger. “Don’t cry,” I said. “This is a place where good things happen, where you meet some wonderful people who will help you. Try not to be afraid. You’ll see. It’s not as bad as you feared.”
Where did I get the courage to do that? Me, who is usually so reserved and quiet. But that woman was just the first. It happened again in a restaurant when a nearby stranger, noticing my turban, pale complexion, and pink ribbon pinned to my sweater, appeared as if she wanted to say something but couldn’t find the words. I walked over to her. She was scheduled for a lumpectomy just two days later. “Try not to be afraid,” I told her, and we stood there amid the din of clanking glasses and silverware scraping against plates for ten minutes talking about breast cancer.
I was becoming more verbal about this illness we didn’t use to discuss. Mastectomies. Breast reconstruction. Prostheses. I listened to myself talk and realized I had something to say that might help others, just as that lady in the infusion room had helped me.
One day a friend called and asked if I could talk to a childhood friend of hers who had recently been diagnosed with breast cancer. I called the woman the next day, and we chatted as though WE had been the childhood friends. We had an instant connection, this common experience of fear, of pain and loss, of searching for hope. Over the next weeks and months, we talked often. This continued even after her treatment ended. We had become great friends, and now instead of talking about cancer, we share about our families, our hopes and desires, our innermost thoughts. What a blessing she is to me.
So, you see, there are some good things that can spring to life amid the destruction of cancer. I emerged a stronger person, more willing to engage with others and share my experience with strangers who seem in need. I gained self-confidence. And I made a true friend and trusted confidante. Could there be any better side effect than that? How ironic that an insidious disease is what led me to it.
Indeed, cancer changes you. It reaches deep within and can take away part of your spirit, but that’s usually temporary. The upside of cancer though, can last much longer if you are open to change and willing to embrace the positives.
♦ ♦ ♦ ♦ ♦
Susan Krauss is a breast cancer survivor living in Reese, MI. She is the author of The Book of Jane. You can learn more about Susan at SusanMKrauss.com.
For Men with Prostate Cancer, Can Exercise Buffer the Cognitive Effects of Hormone Therapy?
by Allison Hourani, BA, Tatiana D. Starr, MA, and Christian J. Nelson, PhD
Androgen deprivation therapy, or hormone therapy, is a mainstay of treatment for many men with prostate cancer. For those with advanced disease, it is the standard of care. Androgen deprivation therapy works by depleting a man’s testosterone, which is a major driver in the growth of prostate cancer cells.
However, while hormone therapy is effective in managing the disease, this type of treatment often comes with some unpleasant side effects. These can include hot flashes, osteoporosis, anemia, fatigue, muscle loss, swelling of the breast tissue, loss of libido, erectile dysfunction, and increased risk of diabetes, cardiovascular disease, and fatal cardiac events, not to mention emotional distress.
Additionally, recent studies have suggested that androgen deprivation therapy can impair cognitive function. Since testosterone is found in areas of the brain responsible for learning and memory, the reduction of testosterone from hormone therapy may directly affect these areas. The areas most often affected are visuospatial abilities, working memory, executive functioning, verbal memory, and processing speed. Cognitive functioning may also be indirectly affected by the other side effects of androgen deprivation therapy.
As evidence of hormone therapy’s negative impact on cognitive functioning continues to grow, investigators are exploring ways to mitigate these effects. One of the more promising interventions is exercise.
In adults with mild cognitive impairment, exercise has been shown to improve attention, processing speed, executive function, memory, and working memory. Since many of these exercise studies include samples of older men (in whom testosterone levels are generally depressed), there are promising indications that exercise may also be effective for men receiving hormone therapy.
Researchers believe there are three potential mechanisms for which exercise may influence brain function:
1 Aerobic exercise may increase blood flow to and from the heart and the brain.
2 Exercise may have an effect on neurotransmitters, or brain chemicals, responsible for concentration and alertness.
3 Exercise can increase a specific type of chemical in the brain called brain-derived neurotrophic factor. BDNF helps the brain generate new neurons, particularly in the areas of the brain related to learning, memory, and higher-level thinking.
Exercise does not need to be vigorous in order to be beneficial. The exercise reported in these studies was moderate, generally brisk walking or jogging.
Dr. Christian Nelson
The take-home message for men with prostate cancer is that thirty minutes of moderate physical activity a few days each week should be enough to potentially counteract the cognitive effects of androgen deprivation therapy. This can include walking, jogging, or even performing common household chores like gardening or raking leaves. You can even make some small lifestyle changes to ramp up the physical activity in your daily routines, for example taking the stairs instead of the elevator, or parking your car at the far end of the lot.
While investigators have yet to prove conclusively that exercise alone can buffer the cognitive effects of androgen deprivation therapy, the current research certainly is promising. Besides, numerous other health benefits of exercise are well established. For your health – both mental and physical – talk with your doctor about incorporating physical activity and exercise into your survivorship care plan.
♦ ♦ ♦ ♦ ♦
Previously a research study assistant at Memorial Sloan Kettering Cancer Center in New York, NY, working on quality-of-life and cognition research in men with prostate cancer, Allison Hourani (not pictured) is now studying social work at the Silver School of Social Work at New York University. Tatiana Starr is a clinical research supervisor at Memorial Sloan Kettering, where she has helped manage a number of quality-of-life research studies in men with prostate cancer. Dr. Christian Nelson is a clinical psychologist with expertise in treating men with prostate cancer and other genitourinary diseases at Memorial Sloan Kettering.
Pro Football Hall of Famer Troy Aikman
Gets Personal about Melanoma
Former Dallas Cowboy Troy Aikman is one of the most decorated quarterbacks in NFL history. In addition to being inducted into both the College Football and Pro Football Hall of Fame, Troy is a six-time Pro Bowl quarterback and a Super Bowl MVP. During his twelve consecutive seasons with the Cowboys, he led his team to a remarkable three Super Bowl victories. Now he’s teaming up with the cancer advocacy community for a new initiative aimed at educating people about advanced melanoma. It’s called Melanoma Just Got Personal. And for Troy, melanoma is personal. He’s a survivor.
Coping recently caught up with the NFL legend, who talked about his stage II melanoma diagnosis and what he’s doing now to raise awareness about the disease and support those who are in a fight for their life.
As an athlete growing up in Southern California, Troy spent more than his fair share of time in the sun. But he never thought much about skin cancer until 1998 when he noticed a suspicious spot on his back. He brought it to the attention of his dermatologist, had a biopsy, and a week later was told he had cancer. Fortunately, Troy’s melanoma was caught early, and his doctor was able to completely remove it surgically.
“[The melanoma] just happened to be in a place where I could see it when I was getting out of the shower.”
Advanced Melanoma Is Not a “One-Size-Fits-All” Disease. It’s Personal.
Advanced melanoma can vary from person to person because of various genetic changes that may be present in the tumor.
Melanoma is one of the cancers with the highest frequency of mutations, and mutation testing is recommended for people who have advanced melanoma.
For example, the BRAF mutation is found in about 50% of advanced melanomas, making it the most common mutation.
There are treatments available that are designed to target cancer cells with the BRAF gene mutation and treat this particular form of advanced melanoma.
“[The melanoma] just happened to be in a place where I could see it when I was getting out of the shower,” Troy says, acknowledging his good fortune in spotting it early. “I still sometimes wonder what would have happened if it was in the middle of my back where I couldn’t see it. That’s the most disconcerting thought.” Troy admits that at the time he wasn’t too familiar with what melanoma is and how lethal it can be. But after talking to his doctor, he got a quick education.
That was nearly 20 years ago, just as the World Wide Web was going mainstream in the U.S. Now people have near-constant access to an abundance of health information online. And Troy says his approach to his diagnosis would be different if it happened today, especially with the advances in melanoma treatment that have occurred over the past few years.
“If I were to be diagnosed right now,” he says, “I would immediately start trying to gather as much information as I can, and find out what mutation of melanoma I have and what’s the best course of action.”
He reveals that part of the reason he signed on with this new initiative is to help others have access to the kind of information he would want if he were diagnosed with advanced melanoma today. “I don’t doubt for a second that this campaign will extend lives,” he asserts, “and I have an opportunity to play a small role in that. I’m really happy about it.”
When I ask Troy what he has learned from facing cancer, which he says is the toughest opponent he’s ever gone up against, the hard-edged athlete gets a little reflective. “As a cancer survivor, you realize that every day is special, that life is precious,” he says. “It sounds cliché, but it really hits home once you’re affected with something like this. It’s devastating news, but there’s hope. It’s important that we all have that.”
♦ ♦ ♦ ♦ ♦
Melanoma Just Got Personal – an initiative of Novartis Oncology, melanoma survivor Troy Aikman, AIM at Melanoma, the Melanoma International Foundation, and the Melanoma Research Foundation – aims to help people living with advanced melanoma learn more about their disease, raise awareness of this rarely discussed skin cancer, and rally support for those fighting for their lives. Learn more at MelanomaJustGotPersonal.com.
Ellen Britton – My Happy Cancer Story
by Alicia King
Yes, you read that right. That’s what renowned musician Ellen Britton calls her brush with colon cancer – her happy cancer story.
When Ellen’s primary care physician insisted she have a colonoscopy recently, Ellen was hesitant. As one of Nashville’s most sought-after guitar instructors, her schedule was already more than full. In addition to lessons, she was also recording, songwriting, and performing with her group, Queen of Hearts. Her doctor was adamant, however. Citing her father’s colon cancer diagnosis at age 78 as a risk factor, she convinced Ellen it was not a good idea to wait. The colonoscopy was scheduled.
Vanderbilt surgeon Dr. Roberta Muldoon was chosen to perform the colonoscopy. Afterward, Dr. Muldoon informed Ellen she had found what appeared to be a benign polyp, and recommended it be removed. Because of the location of the polyp, she explained it would require removing a small part of her colon, and resectioning. If they didn’t, there was a remote chance the pathology could come back a week later as malignant, and they’d have to go back for a second surgery.
Ellen explains her initial resistance, “I had 13 million questions and a deep skepticism, but Dr. Muldoon never wavered. She acknowledged this would be major surgery, but the risk, however small, made it necessary. Doing it this way covered me in the unlikely event it came back positive. She patiently answered everything my husband and I asked. She respected my intelligence and never rushed us. She was a tremendous communicator and didn’t budge.” These discussions included expected recovery time, as well. “Dr. Muldoon told me I could expect to be down for four to six weeks. I told her that wasn’t an option. I sit in a chair and teach guitar; I’m not a roofer,” says Ellen. Having all their questions answered, Ellen and her husband, Bobby King, also a musician, decided to move ahead with the surgery.
The procedure went smoothly, and Ellen was discharged as expected. A week later, the phone call came. The lab results had come back positive. The polyp that had been presumed benign was actually malignant, and the surgeon who insisted on treating it as such was declared by her patient as a hero. Ellen remembers telling Dr. Muldoon, “You know this totally makes you look like a genius.”
Dr. Roberta Muldoon’s Top 5 Reasons to get a Colonoscopy
Dr. Roberta Muldoon
1. Colon and rectal cancers are
preventable. Polyps can be found in the colon and removed at the time of a colonoscopy, which will prevent them from ever turning into a cancer.
2. Colon and rectal cancers are treatable. If the cancer is caught early, it can be removed either endoscopically or surgically. More advanced cancers are also treatable with surgery, chemotherapy, and, at times, radiation.
3. Most colon and rectal cancers are completely asymptomatic; therefore, having a colonoscopy is the best way to find these cancers so they can be treated.
4. It is an easy procedure that could save your life.
5. Because you are worth it!
“By the time I found out I had cancer, it was already out of my body,” says Ellen. “If it’s going to happen, this is the way to do it. I feel like the luckiest girl in the whole USA, and I’ll tell you why. I had a doctor who insisted I have the colonoscopy and a surgeon who insisted on treating what she found as being cancerous, even without the pathology. I took the time to recover, and my husband took great care of me. My friends were supportive, brought food, and not one of them was squeamish about discussing it. What more do you want?”
With all pathology from her nodes and appendix coming back negative, Ellen was told she wouldn’t require any follow-up care beyond regular check-ups. Chemotherapy and radiation were unnecessary.
Ellen told Dr. Muldoon, “I cannot thank you enough. I feel like I have gotten fantastic care.”
“Just doing my job,” Dr. Muldoon replied. “There’s something you can do, though. Spread the word. Tell everyone you know to get a colonoscopy.”
Ellen took this to heart, and now she often makes an unusual plea to her audiences at the end of her show: “Hey, everybody over fifty! Go get a colonoscopy!” Her husband, Bobby, had one. A good friend in Atlanta was long overdue for hers, but made the appointment the day Ellen opened up about her diagnosis.
Both were negative. What else would you expect from a happy cancer story?
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Alicia King is the author of Healing: The Essential Guide to Helping Others Overcome Grief and Loss, her second book on grief support. She also had a colonoscopy after interviewing Ellen Britton. All clear.
ESPN Reporter and Cancer Survivor
Shelley Smith Shares Her Story
by Kaylene Chadwell
If you follow sports, you’ve probably seen Shelley Smith – a lot. The longtime ESPN reporter (she’s been with the network since 1997) and current SportsCenter correspondent has covered just about every sporting event in existence, racking up four Emmys in the process. It’s safe to say that Shelley is one of ESPN’s most recognizable on-air personalities.
Last spring, Shelley became even more recognizable when she appeared on ESPN completely bald after undergoing treatment for breast cancer. Recently, she talked with Coping® magazine about taking on breast cancer, how she handled her chemo-induced hair loss, and the unlikely place where she found support.
On finding out she had breast cancer
In early 2014, Shelley unwittingly started down a life-changing path when she found out a close friend was diagnosed with triple-negative breast cancer. The news prompted Shelley, age 55 at the time, to go in for a mammogram; something she hadn’t done in a couple of years. Later that day, she flew to Oklahoma City for the NBA Conference Finals, putting the cancer screening behind her. When she hadn’t heard from her doctor after a few days, Shelley assumed everything was fine.
However, her world was shaken when she ultimately did get that call. She had breast cancer, which a biopsy later revealed had spread to her lymph nodes.
“Hair has been such a big part of my career. I’ve had big hair, curly hair, short hair, long hair, but never no hair.”
“I was terrified,” Shelley admits. “Then they told me I needed chemotherapy and radiation, and I really lost it. I had uterine cancer before, but they just took out my uterus and I was fine. I figured this would be like that – just go in and cut it out. Then my doctor explained to me, ‘No, this is going to be a marathon. This is not going to be over in June.’”
Reporter Shelley Smith interviews Carmelo Anthony before the 2013 NBA All-Star Game at the Toyota Center in Houston, TX.
(Photo by Travis Bell / ESPN Images)
After making a treatment plan with her doctor, Shelley immediately began taking an estrogen blocker to help shrink the tumor and improve her chances of being a candidate for lumpectomy. The protocol worked. Shelley says, “By the time I went into surgery [after six months of anti-estrogen therapy], my doctor was able to take out the mass, get clear margins, and basically save my breasts.”
On going public with her diagnosis
Shelley didn’t share her breast cancer diagnosis with the public right away. She waited until October – Breast Cancer Awareness Month, fittingly – before announcing the news on Twitter.
“I now join the one in eight women who are battling breast cancer. Early detection will save my life. Tell loved ones,” she wrote. “My tough cancer treatment will begin in January. Until then, I spread the praise of mammograms and ultrasound. Early detection. I am strong and positive as I fight this, just like so many of my breast cancer warrior sisters. We’re Gonna Win!”
The social media site ended up being an unexpected source of support for the veteran sports journalist. Almost immediately, Shelley received overwhelming messages of support and encouragement from those in the sports world and cancer survivors alike.
“I’m stronger inside than I ever thought I could be. I can take on anything now.”
“I remember the night before I posted saying to my daughter ‘Should I tell people?’ By this time, I had a pretty winnable plan. If I hadn’t, I don’t know that I would have gone public,” Shelley confesses. “But I just said, ‘I’m gonna do it. No one’s going to pay attention anyway.’ I was really, really wrong about that. It went viral.
“People were so supportive,” she adds. “Twitter can be a very cruel tool, and it suddenly became a source of support for me. There would be nights I would wake up and just read the tweets people posted. It helped knowing I had so much support out there.”
Almost a year after being diagnosed with breast cancer, a confidently bald Shelley Smith makes her television return, reporting on the 2015 NFL Draft from Hawaii.
On making it through treatment
(and its side effects)
Three months after taking to Twitter with her announcement, Shelley underwent a lumpectomy, followed by radiation and chemotherapy. The thought of chemotherapy scared her at first, but Shelley says she soon realized that by having to go through chemo it meant she had a chance to fight this disease. “I’m lucky that I have a fight,” she says. “So many people out there would love to have this fight.”
Still, the beautiful redhead did have some reservations about losing her hair. “Hair has been such a big part of my career,” Shelley admits. “I’ve had big hair, curly hair, short hair, long hair, but never no hair. And then a friend of mine, a former oncology nurse, said to me, ‘When you lose your hair, it just means the chemo is working.’ And that took away all the fear I had about losing my hair.”
It may have also helped spur her bold decision to forgo wearing a wig during her ESPN broadcasts. Instead, she made headlines by returning to television confidently bald. “I thought there should be no stigma for losing your hair because of chemotherapy,” she asserts. “It’s a very personal decision whether to go bald or wear a wig. I don’t fault anyone who wears one, but it just wasn’t for me.”
While battling cancer, Shelley also fought off two infections and the flu. She says that getting her stamina back was the most difficult obstacle she faced during treatment and recovery, especially with her busy career. “I was very sick,” she confesses. “It was really hard when I started back to work. Getting my energy back was tough. And I had chemo brain.”
Though it took her some time to get back into the full swing of things – being in a career that keeps you constantly moving isn’t easy for anyone – she says she now has the energy to work the 20-hour days that are sometimes sprung upon her. “What I’ve realized is that I’m stronger inside than I ever thought I could be,” she reflects. “I can take on anything now.”
On the future
Though Shelley’s cancer has been deemed N.E.D. – no evidence of disease – she will still undergo regular tests to confirm her cancer-free status. She says she will also take the estrogen- blocker Arimidex for the next nine years to help ensure that her cancer doesn’t come back. “There’s always a fear of recurrence, but I refuse to live in fear,” she avows.
Shelley says she plans to continue to work with ESPN, but she doesn’t know where the job will take her. That’s what she loves about it. She also wants to keep speaking out about breast cancer and urging women to get mammograms. “I’m not happy I went through cancer,” she muses. “But if somebody has to go through it, I’m glad it was me. The thing that makes me the happiest is when someone says, ‘I just got a mammogram for you.’”
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Eating Well during Cancer Treatment
by Carolyn Katzin, MS, CNS
“What should I eat now?” After a cancer diagnosis, most people want to know what changes they should make in their diet. After all, eating is one of the few areas that cancer survivors can exercise control over once a diagnosis has been made and treatment begins.
The 80/20 Rule
When it comes to eating well during cancer treatment, a simple rule of thumb to remember is the 80/20 rule. Eat food that is nutrient rich (contains protein, vitamins, minerals, and other useful components for building new cells) 80 percent of the time, and eat purely for pleasure 20 percent of the time.
It’s easy to be confused about the difference between eating for cancer prevention and eating during cancer treatment. Let’s clarify. Foods that may be associated with an increased incidence of certain types of cancer are generally best restricted. These include meats cooked at high temperatures and processed meats (those containing nitrites and other heterocyclic amines). During treatment, however, eating a small quantity of processed meats may help stimulate appetite, as they tend to be more flavorful. Thus, these might fall into the 20 percent category and be enjoyed occasionally. Marinades can help reduce the formation of potential carcinogens during cooking, as well as enhance flavor.
Most people recognize that foods high in added sugars should be restricted in a healthful, wellness-promoting diet. However, this doesn’t mean that you should eliminate all sugar (and hence much of the pleasure for many people) out of your diet. It simply means that these foods should also fall into the 20 percent category – eat or drink them for pleasure, in small quantities.
Remember the 80/20 Rule: Eat food that is nutrient rich 80% of the time, and eat purely for pleasure 20% of the time.
It is especially important to limit foods high in added sugars during chemotherapy, as most infusion cocktails include steroids that affect glucose and insulin dynamics. A low glycemic load diet is recommended during chemotherapy to help regulate blood sugar levels. (See the sidebar on the next page to learn more about glycemic load.)
Nutrition and Treatment Side
Treatment for cancer may include all or some of these protocols: surgery, chemotherapy, immunotherapy, and radiation. Each of these can affect appetite, digestion, and bowel functions. Let’s look at some of the common side effects of treatments and how modifying your diet may be helpful.
Fatigue is a common side effect of all cancer treatments. Dehydration can worsen fatigue, and may even be a primary cause, so it’s important to make sure you drink sufficient fluids each day. Soups and broths are valuable ways to provide electrolyte-rich and tasty fluids. You may also want to switch to decaffeinated tea or coffee. An herbal alternative would be Rooibos, a popular South African tea that is low in tannins and caffeine. Ashwagandha is another plant that is recommended to help fight fatigue; the root can be made into a tea. As with many herbal products, however, these may interact with some medications, as they can affect liver enzyme activity. Tell your doctor about any herbal products you consume, either as teas or as supplements, so they can alert you to any unwanted side effects.
A healthy and balanced diet contains a mixture of high glycemic index and low glycemic index foods, with an emphasis on beans, whole grains, vegetables, and fruit.
Appetite and taste changes, as well as feelings of early satiety or fullness, may arise during chemotherapy treatment. Eating small, frequent snacks may help you maintain a sufficient protein intake, which is important for maintaining muscle mass. Taste changes are usually temporary and may be minimized by trying some masking flavors such as cherry, strawberry, and banana. Umami is a taste that is often not as readily affected as sweet, bitter, or salty. Many Asian dishes are rich in umami (it is a glutamate-like flavor similar to MSG). You may also want to experiment with different textures and aromas, as they are just as important as taste in stimulating appetite and are sometimes easier to modify. Ginger is a safe and effective way to minimize nausea; try ginger ale, tea, hard candies, or ginger-flavored cookies, for example.
Changes in bowel habits are very common and arise as a side effect of chemotherapy, as well as anti-nausea and pain medications. Gentle natural laxatives include pitted fruits like plums, apricots, and cherries, as well as their dried versions, such as prunes, for example. To manage diarrhea, try eating bland foods (such as bananas, rice, applesauce, white toast, and rice or oat breakfast cereals) that help bind fluids in the bowel. Many people find avoiding milk is helpful during treatment, as the lactose (milk sugar) may be poorly absorbed and cause abdominal gas or diarrhea. Adding the enzyme lactase may help with the gastrointestinal distress, as may simply switching to almond milk or rice milk.
Two Key Points to Remember
If you don’t take anything else away, I want you to remember these two things:
1. Get sufficient protein. For most people, this is equivalent to about eight ounces of fish, lean meat, or a vegetarian alternative each day. If you lack appetite, then a protein smoothie made from whey or rice and pea protein powder mixed with almond milk or rice milk is a good alternative.
2. Stay well hydrated by having water, soups, broths, and vegetable juices throughout the day – about eight to ten glasses a day total.
Many people find the topic of nutrition support and supplement information difficult to navigate during cancer treatment. It is good to have someone who can guide you and your loved ones during this time to help you sort out the hype and misinformation that is, unfortunately, rampant on the Internet. I suggest seeking out a trained nutrition professional who specializes in oncology.
Eat well and stay well!
Understanding Glycemic Index and Glycemic Load
Some foods provide very rapid energy to the body and brain. If these foods contain few nutrients, then you may soon find yourself “running on empty,” or you may simply be overfed and undernourished. A healthy and balanced diet contains a mixture of high glycemic index and low glycemic index foods, with an emphasis on beans, whole grains, vegetables, and fruit – in other words, plant-based foods.
What is glycemic index?
It is a measure of how fast the carbohydrate of a particular food is converted to glucose and enters the blood. The numbers are percentages with respect to a reference food.
How is glycemic index determined?
A reference food (white bread in our list) is given a rating of 100, and all other foods are tested as to how they affect a person’s blood sugar, insulin, and lipid levels compared to the reference food. For example, with white bread as a reference food, beans would have a glycemic index of about 60.
What does it all mean?
Put simply, the more glucose that reaches the blood in the first three hours after consuming a food, the higher its glycemic index.
What is glycemic load?
Glycemic load is a more relevant concept, as it is an indicator of how much a certain food will raise a person’s blood glucose level after eating it. Glycemic load accounts for how much carbohydrate is in the food, in addition to how much each gram of carbohydrate in the food raises blood glucose levels. Thus, some foods may have a high glycemic index but a low glycemic load. Foods with more dietary fiber tend to have a lower glycemic load then foods with less dietary fiber.
It’s important to keep in mind that glycemic index and glycemic load can be valuable in modifying your diet, but only when seen in the context of your whole day’s intake of food – not just one food item or one meal. Remember, a healthy and balanced diet contains a mixture of both high glycemic index and low glycemic index foods.
High Glycemic Index Foods
Low Glycemic Index Foods
Whole grain pasta
Fruit (berries especially)
Beans, seeds, nuts
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Carolyn Katzin is an Integrative Oncology Specialist at the Simms/Mann – UCLA Center for Integrative Oncology in Los Angeles, CA.
Occupational Therapy for Cancer Survivors
Helping You Get Your Life Back after Cancer
by Claudine Campbell, MOT, OTR/L, CLT
Cancer and its treatment can hinder your participation in important and meaningful activities in many different ways. For example, the various side effects of treatment can impede your ability to take a shower every day, prepare meals, or do the laundry. Work responsibilities, leisure interests, social activities, and caring for your children can also become more challenging during cancer treatment and recovery. On top of these physical challenges, mental functions often are affected as well. For instance, you may have difficulty recalling the names of new acquaintances or remembering the details of an article or book chapter you just read.
Can you relate to any of these scenarios? If so, you’re not alone. And there may be something that can help – occupational therapy.
Occupational therapy practitioners are healthcare providers who possess expertise in the knowledge of human occupation. In other words, they know how to help cancer survivors with self-care, work, play, leisure, and social participation. They have special insight into how your physical, mental, and spiritual limitations may be impeding your everyday function within your environment. Occupational therapy focuses on helping you overcome these limitations in order to make completing everyday tasks and participating in important activities easier.
An occupational therapist can also connect you with professional or community-based support to comprehensively address your individual needs. In fact, the main objective of a team-based approach to occupational therapy is to help you set goals for functional rehabilitation after cancer treatment and put support systems in place to help you reach these goals and improve your everyday function.
Let’s look at some of the most common rehabilitation goals that cancer survivors seek to achieve and how occupational therapy can help you reach them.
Get Better Sleep
An occupational therapist may suggest that you keep a record of the times you go to sleep (including naps) and wake up. Maintaining a sleep journal can help you notice any patterns surrounding when you have difficulty falling asleep or staying asleep. Other suggestions may include keeping your bedroom quiet and dark, restricting television and computer use at night, or limiting your fluid intake before bedtime.
♦ Have More Energy to Participate in Activities I Enjoy
An occupational therapist can teach you energy conservation techniques to help you balance periods of activity and rest so you can save up your energy for the things that really matter to you. Your therapist can also help you develop a routine for your daily activities, teach you how to schedule important activities during times when you have more energy, suggest ways to modify your home or work environment so that it is more efficient, and help you learn how to do everyday tasks in a way that spends less energy.
♦ Improve Concentration
An occupational therapist can give you tips for improving concentration and focused attention throughout the day. Suggestions may include using a highlighter to mark key points in a document, article, or book; dividing tasks into smaller, more manageable parts; planning breaks during an activity; and recognizing internal distractions (such as stray thoughts, emotions, or physical feelings, like hunger) that may interrupt your ability to focus. Keeping lists of things to buy, errands to run, phone calls to return, or questions to ask your doctor, and crossing items off as you finish them, can also help you stay focused throughout the day.
♦ Complete Everyday Tasks
By helping you prioritize which tasks are necessary and important, an occupational therapist can work with you to determine how to successfully complete those desired tasks or activities. An occupational therapist can offer you creative solutions to help you modify or simplify daily tasks, or suggest adaptive equipment to make them less difficult. For example, sitting on a shower stool during a shower can conserve energy and may make bathing easier. Another creative solution might be to set reminders on your smartphone so that you don’t forget important tasks or appointments.
If you find you are having difficulty completing daily tasks or participating in activities that are important to you, talk to your doctor about occupational therapy. An occupational therapist can help you break down the barriers that may be holding you back from fully enjoying your life. You deserve the best life possible. Don’t let the side effects of cancer or its treatment keep you from living it.
♦ ♦ ♦ ♦ ♦
Claudine Campbell is the occupational therapy manager at Memorial Sloan Kettering Cancer Center in New York, NY. She has over 14 years experience in oncology rehabilitation.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, November/December 2015.
Parent to Parent
Advice for Raising a Child with Cancer
by Ellie Ewoldt
Get on their level.
Try to explain the situation in their terms. Maybe their tumor has a name, or maybe it’s not a tumor at all, but a big ball. And maybe the IV stabilizer that wraps around their arms is a big, fluffy taco. Just because your child is in a hospital, that doesn’t mean they stop being a child – if anything, they need to find areas of whimsy or lightness even more than normal. Don’t be afraid to speak openly on their level.
Set realistic expectations.
There are only so many hills you can choose to die on, and keeping up with average age-related milestones shouldn’t be one of them. Each small accomplishment for a cancer child is a huge victory. My son Chase was potty-trained and learned to ride a bike all in the same year – when he was five. But once upon a time, we weren’t even sure if he’d live to see three. So find what works for you and your cancer child, and be comfortable there.
Raising a child with cancer involves carrying around more than a purse stuffed with crayons or Legos. (Seriously, how do they keep getting in there?) I carry a bag with gloves, alcohol swabs, clamps, all the supplies needed to triage a central line, as well as a rescue medication in case of a seizure, and it goes everywhere that Chase does.
Just because your child is in a hospital, that doesn’t mean they stop being a child.
Learn to celebrate.
Find ways to celebrate the good moments and days. Of course, we would prefer Chase’s memories to be of running in the park, but I’ll run down the hospital hall as he blows through a crowd of doctors, yelling, “Gentlemen, start your engines!” I’ll make paper airplanes in the ER. And I will do anything else necessary to make him smile. Never confuse grief over the cancer with grief over a living child. Find ways to celebrate your child and to celebrate life.
Let go of “normal.”
Letting go of the social standard for what a day should look like makes it easier to cope with the curveballs that come our way. For any parent of a child with cancer, “normal” is any trip to the hospital where we are behind the wheel, instead of a paramedic. Normal is when we are in and out for tests instead of sleeping overnight in a hospital chair. In truth, “normal” is just a setting on a washing machine anyway, right?
Acceptance is crucial.
Never stop fighting the cancer, but learn to accept its presence. I hated that Chase lay in a hospital bed, weak and worn, but the life lessons I learned from him and the community we found with other pediatric cancer parents, these things were – and are – priceless. In accepting that for better or worse there’s cancer in your life, you’ll be able to move forward, to connect and grow in ways you can only imagine.
Savor the moments.
Write things down. You think everything will be engraved in your memory forever, and it’s true that many things will, but write it down anyway. There will be many times when you think it can’t get any harder or there is nothing to smile about, but it’s in the looking back that you’ll see even harder moments that you survived and joyful moments that you forgot. Savor those times, and write them down.
In your own time, in your own way, let cancer change your life. I had no idea how terrifying the statistics were or how few drugs there were until it was my son on the table. While our lives hurt like crazy, I believe that we’ve been given our stories to use. Find an outlet (for us, it was the St. Baldrick’s Foundation) and start sharing your story and making a difference. It may not change the outcome of our story, but, someday, my hope is that we’ll all be able to join together and say of this wretched disease, “It was, but it is no more.”
♦ ♦ ♦ ♦ ♦
Ellie Ewoldt is a wife, mother of four, daughter, sister, and friend. She is also the author of Chase Away Cancer, to be published next May. Her son Chase was only two years old when he was diagnosed with atypical teratoid rhabdoid tumor (ATRT), a type of brain and spine cancer. Given just a 20-percent chance of survival, Chase started a rigorous treatment plan that included brain surgery, radiation, and chemotherapy. Now at age five, Chase is stable and continues to go in for regular checkups. This year, Chase was chosen to serve as one of the St. Baldrick’s Foundation’s 2015 Ambassadors.
The St. Baldrick’s Foundation is a volunteer-powered charity committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives. Since 2005, St. Baldrick’s has awarded more than $176 million to support lifesaving research, making the Foundation the largest private funder of childhood cancer research grants. Learn more at stbaldricks.org.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, November/December 2015.
Yes, Ladies, You Can Keep Your Sexuality after a Cancer Diagnosis
by Joanne K. Rash, MPAS, PA-C, and Lori A. Seaborne, MPAS, PA-C
A cancer diagnosis may change the way you see yourself. Before cancer, your sexuality may have been an integral part of your identity. However, cancer and its treatment can cause a number of sexual issues. If you’re experiencing cancer-related sexual dysfunction, you may feel as if you’ve lost this part of your identity. If you avoid intimacy because of those issues, you may also feel a loss of normalcy. As you recover from treatment, it’s natural to want to reclaim that part of yourself. So let’s look at some of the common sexual problems female cancer survivors face and what you can do to overcome them.
How Cancer Treatment Affects Sexual Function
Surgery, chemotherapy, radiation, and hormonal treatments can all put female cancer survivors into early menopause. When this happens, your ovaries will stop producing estrogen (a woman’s main sex hormone) and your menstrual periods will stop. This decrease in estrogen can lead to vaginal dryness, itching, and irritation. You may also have hot flashes, night sweats, sleep problems, and mood changes. And if that weren’t enough, many women begin to lose interest in sex, have difficulty becoming aroused, or are unable to achieve orgasm. Some even experience pain or discomfort during sex.
Each individual cancer treatment can carry its own set of sexual side effects as well. Surgery can cause scarring, swelling, pain, and numbness. Chemotherapy may cause fatigue, vaginal dryness, decreased desire, nausea, or nerve damage. Radiation therapy can thicken or discolor the radiated skin and cause sensation changes. After pelvic radiation, you may experience vaginal tissue inflammation or vaginal shortening. Hormone therapy can cause menopausal symptoms and joint pain.
During cancer treatment, you may start to think of yourself as a “sick” person, and you may forget that you are also a sexual being. Likewise, you may begin to view your partner as your caretaker rather than your lover.
Your Emotions Can Play a Part Too
During cancer treatment, you may start to think of yourself as a “sick” person, and you may forget that you are also a sexual being. Likewise, you may begin to view your partner as your caretaker rather than your lover. Due to a variety of emotional issues, sexual intimacy may not be easy during this time. You may be exhausted and overwhelmed. You may feel unattractive because of the way cancer has changed how your body looks, feels, and responds. You may even experience grief over loss of fertility, loss of sexual body parts, or loss of sexual function.
But You Can Reclaim Your Sexuality
If intimacy and sexual touching stopped during cancer treatment, there are things you can do to invite them back into your life and reclaim your sexuality. First, focus on good communication. Acknowledge your fears and grief, and share your concerns with your partner. Tell your partner where you do, and don’t, like to be touched.
Remember that your body can give you pleasure (even when sex isn’t involved). Spend time hugging, kissing, holding hands, and laughing with your partner. Laughter is a great way to connect – it lowers stress hormones, strengthens the immune system, and eases pain. Share sensual touching, like massage. It’s important to take time to enjoy sexual touch without penetration. Focus on the fun and playfulness of being intimate, rather than only on penetration and orgasm.
Protect Your Sexual Health
Even if you don’t have a partner, it’s important to keep your vaginal tissues healthy. The following tips can help:
♦ Embrace an overall healthy lifestyle. Drink plenty of water, eat lots of fruits and vegetables, and avoid sweets and processed foods. Exercise for 30 to 60 minutes a day, and get plenty of sleep. Avoid smoking, which damages the small blood vessels that are important for sexual arousal.
♦ Use moisturizers and lubricants. A vaginal moisturizer can help keep vaginal tissue healthy, regardless of whether you are currently having sex. It can be applied daily or several times a week. Look for ones with hyaluronic acid, aloe vera, Vitamin E, or carrageenan. After menopause, you may not get “wet” during sex. A good quality lubricant can help. Water-based lubricants are great, but they may need to be reapplied during intercourse. Silicone-based lubricants stay more slippery. Avoid glycerin, waxes, petroleum jelly (Vaseline), and oils other than Vitamin E.
♦ Tone your pelvic floor. It helps to have good blood flow and healthy tone in your pelvic floor muscles. Too much tone can lead to pain. Not enough tone may cause urinary incontinence and lack of arousal. Ask your doctor about things you can do to tone your pelvic floor muscles. You may even want to ask for a referral to a physical therapist who specializes in treating the pelvic floor.
♦ Employ vibration. Using a vibrating wand with a water-based lubricant in the vagina can help maintain flexibility of the vaginal tissues. You can do this alone or with a partner several times a week. Use a wand that is long enough to reach the top of the vagina, that has a smooth surface, and that feels comfortable to you.
♦ Talk to your doctor about estrogen. Some women may benefit from a low-dose estrogen cream or tablet, which can help the vagina regain moisture and ability to stretch. However, it’s important to note that supplemental estrogen may interfere with certain types of cancer treatments and that several health concerns are associated with its use. Talk to your doctor about whether estrogen is appropriate for you.
Is There Sex after Cancer?
The short answer is yes. You can remain sexually active after a cancer diagnosis. Your post-cancer sexual life may look different from the one you had before your diagnosis, and a little work may be required on your part to reclaim your sexuality. But with attention, creativity, playfulness, and patience, you can feel sexual pleasure and connect intimately with your partner again.
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Joanne Rash and Lori Seaborne are physician assistants at the University of Wisconsin Hospital in Madison, WI. Joanne works in the Department of Gynecologic Oncology, and Lori is a certified sexuality counselor who specializes in breast cancer survivorship. Together, they developed the Women’s Integrative Sexual Health (WISH) program at the UW Carbone Cancer Center, where they work to address the sexual health concerns of women with cancer.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, November/December 2015.
Facing Cancer Together
How Women with Cancer and Their Partners Can Learn to Work As a Team
by Courtney Bitz, LCWS
When a woman is diagnosed with cancer, it can send her life into a tailspin and cause a great deal of emotional turmoil. However, she is not the only one who may suffer emotional distress. Cancer can take a toll on her partner as well, with some studies revealing that partners experience just as much distress as the person diagnosed.
And here’s the rub. Research shows that women cope better with their illness when they have an emotionally supportive partner. However, a distressed partner may have a difficult time providing the needed emotional support. Because of this, it is essential for couples to learn how to work together to manage the stress that accompanies a cancer diagnosis.
Bridging the Gap Between the Sexes
Though each individual is unique, in general, men and women often respond differently during times of stress. Women typically reach out to others to share their concerns and fears, whereas men are less likely to discuss their emotions, especially when that emotion is fear. Men often respond to stress by trying to solve the problem, while women often want to talk it out.
Research shows that women cope better with their illness when they have an emotionally supportive partner.
To bridge the gap, women with cancer and their partners need to learn to work together as a team, recognizing each other’s strengths (and weaknesses), and building upon those strengths. For example, partners may learn that instead of immediately trying to solve a problem, it’s OK to simply sit quietly and listen, even if the woman is crying or upset. And women may learn that they should focus only on what they need from their partner today, and avoid bringing up past grievances.
By better understanding each other’s needs, women with cancer and their partners can ensure that those needs are met throughout the cancer experience. When this happens, many couples find that facing cancer together actually helps them grow closer to one another.
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Courtney Bitz is a clinical social worker in the Department of Supportive Care Medicine at City of Hope National Medical Center in Duarte, CA, where she leads the development of the Couples Coping with Cancer Together Program, which provides gender- and strength-based education and support to survivors and their partners.
Determined to Live
by Virginia Repsys
I was 27 years old when I was diagnosed with Hodgkin lymphoma. I had known something was wrong. But I never imagined it’d be cancer. I guess none of us do.
I was devastated, but I tried to remain hopeful. When I researched my disease online, I found out that my type and stage of cancer had a 90-percent five-year survival rate. But even that didn’t quell the fear I felt inside. It wasn’t until I met with my oncologist that I truly started believing I could beat this cancer. He was determined to cure me, and I was determined to live.
I promised myself I’d always go to chemotherapy well dressed and with a smile on my face. It gave me a confidence boost. Even though I grew more anxious as my treatment progressed, it always helped when I “put my game face on” before entering the infusion room. I remained hopeful – that treatment would end, that I would survive.
If I could give you any other advice, it would be this: Do something that empowers you.
With certainty, I can say that the one thing that most helped me endure the difficult road was surrounding myself with positive, hopeful people. People who knew how to make me laugh so hard I cried. People who lent a shoulder to lean on when I felt dejected or afraid, but who always reminded me to hold on to hope. You’ll need those types of people with you as you walk this road.
If I could give you any other advice, it would be this: Do something that empowers you. Write in a journal. Smile as much as you can. Laugh, even when the road is long and hard and seems impossible. Laughter heals the soul. It healed mine.
There were many times when I wanted to give up and let the anguish consume me, but I was determined to live. I never gave up. Don’t you give up, either. Hold on to faith, hold on to hope, and live.
♦ ♦ ♦ ♦ ♦
Virginia Repsys is a Hodgkin lymphoma survivor living in Garfield, NJ.
Men & Cancer
How Cancer Treatment Affects Your Fertility
And What You Can Do About It
by Mary K. Samplaski, MD, and Rebecca Z. Sokol, MD, MPH
When you first hear the words, “You have cancer,” family planning and your future fertility are probably not top of mind.
Naturally, you’re likely more focused on things like treatment, survival, and prognosis. However, you may be glad to know that with modern treatment protocols, many cancers have excellent prognoses. Because of this, healthcare providers are beginning to broaden their focus to not only treat the cancer, but also address the long-term effects of cancer and its treatment.
One important long-term concern for many men who are diagnosed with cancer is how cancer treatment may affect their ability to father children. Because the sperm-producing cells in the testicles are exquisitely sensitive to the effects of cancer treatments, these treatments can easily decrease sperm production. The extent to which fertility is affected generally depends on the type of treatment received and can range from a low sperm count to no sperm production at all. These effects may be permanent or temporary. In addition, some cancer treatments can lead to low testosterone levels, which can affect male fertility by decreasing libido, erectile function, and sexual satisfaction.
How Chemotherapy Affects Fertility
The toxicity of chemotherapy treatment depends on the type of cancer being treated, the agent used, the dosage administered, the dosing interval, and other agents used simultaneously. Therapies are typically categorized from low risk to high risk according to how toxic they are to the testicles. However, no chemotherapeutic agent can be considered truly without risk. It’s important to talk to your doctor about how your chemo treatment may affect your fertility.
The sperm-producing cells in the testicles are exquisitely sensitive to the effects of cancer treatments.
For example, cisplatin is a mainstay in the treatment of cancers commonly seen in men of reproductive age, including testicular cancer and lymphoma. Low doses of cisplatin lower sperm counts below normal, and high doses severely suppress sperm production.
How Radiation Affects Fertility
Radiation therapy, either directly to the testes or through scatter exposure, can damage the testicles. The extent of this damage depends on the total radiation dose received, the radiation field, and the dosing schedule, with pre-pubertal boys being more sensitive than adults.
Very low doses of radiation have been shown to result in temporary absence of sperm in the semen, and moderate doses in permanent absence of sperm. Total body irradiation prior to stem cell transplantation is particularly toxic due to the high radiation doses required, causing permanent gonadal failure and fertility loss in approximately 80 percent of men.
Dr. Rebecca Sokol
How Surgery Affects Fertility
Surgery alone does not usually affect sperm production. However, abdominal or pelvic surgery for cancer may impair sexual or reproductive function. An obvious example is the removal of a testicle as treatment for testicular cancer. Other examples include damage to the nerves or accessary structures responsible for erections or ejaculation during abdominal or pelvic surgery. Newer surgical techniques have been implemented to minimize the risk of damage; however, there is currently no treatment that eliminates the risk completely.
How to Protect Your Fertility When You’ve Been Diagnosed with Cancer
The most common fertility preservation option for men with cancer is semen cryopreservation, also known as sperm banking. Banking sperm prior to starting cancer treatment provides “insurance” for restoring your post-treatment fertility, as the frozen sperm can later be thawed and used in a fertility procedure like IVF in order to achieve pregnancy.
Ideally, a man would need to make about six sperm deposits for each child he might want to have; therefore, you should begin to bank your sperm as soon as possible after cancer diagnosis. Likewise, it is crucial that you talk to your doctor about your fertility preservation options early on in the treatment planning process. Having this discussion with your doctor before starting cancer treatment is the best way to protect your ability to start or grow your family after your cancer has been treated.
♦ ♦ ♦ ♦ ♦
Dr. Mary Samplaski is an assistant professor of Urology and director of the Section of Male Infertility, Andrology, and Microsurgery in the Institute of Urology at the University of Southern California in Los Angeles, CA. Dr. Rebecca Sokol is a professor of Medicine, as well as Obstetrics and Gynecology, at USC’s Keck School of Medicine. She is also president of the American Society for Reproductive Medicine.
Understanding Multiple Myeloma
Plasma cell neoplasms are diseases in which the body makes too many plasma cells. Multiple myeloma is a type of plasma cell neoplasm.
In multiple myeloma, abnormal plasma cells (myeloma cells) build up in the bone marrow and form tumors
in many bones of the body. These tumors may keep the bone marrow from making enough healthy blood cells. Normally, the bone marrow makes stem cells (immature cells) that become three types of mature blood cells:
♦ Red blood cells that carry oxygen and other substances to all tissues of the body
♦ White blood cells that fight infection and disease
♦ Platelets that form blood clots to help prevent bleeding
As the number of myeloma cells increases, fewer red blood cells, white blood cells, and platelets are made. The myeloma cells also damage and weaken the bone.
Sometimes multiple myeloma does not cause any signs or symptoms. It may be found when a blood or urine test is done for another condition. Signs and symptoms may be caused by multiple myeloma or other conditions. Check with your doctor if you have any of the following symptoms:
♦ Bone pain, especially in the back or ribs
♦ Bones that break easily
♦ Fever for no known reason or frequent infections
♦ Easy bruising or bleeding
♦ Trouble breathing
♦ Weakness of the arms or legs
♦ Feeling very tired
Plasma cell neoplasms, including multiple myeloma, are most common in people who are middle aged or older.
A tumor can damage the bone and cause hypercalcemia (too much calcium in the blood). This can affect many organs in the body, including the kidneys, nerves, heart, muscles, and digestive tract, and cause serious health problems.
Hypercalcemia may cause the following signs and symptoms:
♦ Loss of appetite
♦ Nausea or vomiting
♦ Feeling thirsty
♦ Frequent urination
♦ Feeling very tired
♦ Muscle weakness
♦ Confusion or trouble thinking
Multiple myeloma and other plasma cell neoplasms may cause a condition called amyloidosis.
In rare cases, multiple myeloma can cause peripheral nerves (nerves that are not in the brain or spinal cord) and organs to fail. This may be caused by a condition called amyloidosis. Antibody proteins build up and stick together in peripheral nerves and organs, such as the kidney and heart. This can cause the nerves and organs to become stiff and unable to work the way they should.
Amyloidosis may cause the following signs and symptoms:
♦ Feeling very tired
♦ Purple spots on the skin
♦ Enlarged tongue
♦ Swelling caused by fluid in your body’s tissues
♦ Tingling or numbness in your legs and feet
Age can affect the risk of plasma cell neoplasms.
Anything that increases your risk of getting a disease is called a risk factor. Having a risk factor does not mean that you will get cancer, and not having risk factors doesn’t mean that you will not get cancer. Talk with your doctor if you think you may be at risk.
Plasma cell neoplasms, including multiple myeloma, are most common in people who are middle aged or older. For multiple myeloma, other risk factors include the following:
♦ Being black
♦ Being male
♦ Having a personal history of monoclonal gammopathy of undetermined significance (MGUS) or plasmacytoma
♦ Being exposed to radiation or certain chemicals
Tests that examine the blood, bone marrow, and urine are used to detect and diagnose multiple myeloma and other plasma cell neoplasms.
The following tests and procedures may be used:
♦ Physical exam and history
♦ Blood and urine immunoglobulin studies
♦ Bone marrow aspiration and biopsy, which is sometimes followed by a cytogenetic analysis of the tissue sample
♦ Skeletal bone survey
♦ Complete blood count (CBC) with differential
♦ Blood chemistry studies
♦ 24-hour urine test
♦ MRI (magnetic resonance imaging)
♦ CT scan (also called CAT scan, computed tomography, computerized tomography, or computerized axial tomography) F PET-CT scan
Certain factors affect prognosis and treatment options.
Your multiple myeloma prognosis (chance of recovery) depends on the following:
♦ The stage of the disease
♦ Whether a certain immunoglobulin (antibody) is present
♦ Whether there are certain genetic changes
♦ Whether the kidney is damaged
♦ Whether the cancer responds to initial treatment or recurs (comes back)
Multiple myeloma treatment options depend on the following:
♦ Your age and general health
♦ Whether there are signs, symptoms, or health problems (such as kidney failure or infection) related to the disease
♦ Whether the cancer responds to initial treatment or recurs
Your multiple myeloma treatment options may include chemotherapy, other drug therapy, targeted therapy, high-dose chemotherapy with stem cell transplant, biologic therapy, radiation therapy, surgery, and watchful waiting. Your doctor will help you determine which treatment option is best for you.
♦ ♦ ♦ ♦ ♦
Source: National Cancer Institute
Are You at Risk for Falls?
For most cancer survivors, the answer is yes.
by Cassandra Vonnes, MS, ARNP, GNP-BC
It can happen in a blink of an eye – an accident, a misstep, light-headedness when standing too quickly. According to the U.S. Centers for Disease Control and Prevention, unintentional falls are the leading cause of injury and death in Americans over the age of 65. Typically, fall risks are highest for the elderly. However, people with cancer, regardless of age, are also at high risk for falls because of the disease and its complicated treatments.
How Cancer Increases Your Risk of Falls
It is estimated that 20 percent of people 65 years old or older with newly diagnosed cancer will experience a fall at home within the first six months after their diagnosis. There are several factors related to cancer and cancer treatments that increase the risk of falling.
The medications cancer survivors often take for nausea, anxiety, or pain can act on the central nervous system and affect balance, coordination, and blood pressure. These drugs can cause feelings of faintness or unsteadiness, drowsiness, and confusion. They can also cause you to forget your limitations. It is important to know the possible side effects of the medications you are taking so you can tell your doctor or nurse how the drugs make you feel.
Loss of Strength
Extended bedrest and a decrease in physical activity often occur during cancer treatment. This can lead to a loss of muscle strength and leg weakness, which can increase your risk of falling. Regular activity (even just sitting in a chair) can help you maintain your strength and prevent a fall.
Low Blood Counts
Chemotherapy can cause anemia, or a drop in your hemoglobin. Hemoglobin is the substance in your red blood cells that carries oxygen to your tissues. Without enough oxygen, you can feel tired, weak, short of breath, or lightheaded. This can make regular activities more difficult. Anemia can also cause low blood pressure, which is linked to an increase risk of falls.
20% of people 65 years or older with newly
will experience a fall at home within the first six months
after their diagnosis.
Treatment-related diarrhea and vomiting, or not drinking enough fluids, can lead to dehydration. Dehydration is common during cancer treatment and can increase your risk of falling. When you are dehydrated, your blood pressure may drop when standing. This is called postural or orthostatic hypotension (low blood pressure). If your blood pressure is low and you go from a sitting to a standing position too quickly, you may faint or pass out. If you feel dizzy or lightheaded, sit or lie down in bed and notify your medical team. To prevent dehydration, keep track of the fluids you drink to make sure you are getting enough to stay hydrated. If you are experiencing diarrhea or vomiting, make sure to take in extra fluids to replace those which are lost.
Imbalances in electrolytes, such as sodium, potassium, magnesium, and calcium, are also common in people being treated for cancer. Electrolyte levels that are too high or too low can cause an irregular heartbeat or changes in the central nervous system that can cause you to faint. An electrolyte imbalance can also cause your central nervous system to become uncoordinated. Regular blood tests can tell your doctor if there is a problem with your electrolyte levels, and electrolytes can be replaced with an IV infusion or pills if needed.
Certain types of chemotherapy and other drugs used to treat cancer can damage the nerves in your hands and feet. This is called chemotherapy-induced peripheral neuropathy. These peripheral nerves carry sensations or feelings from the hands and feet to the brain. When they become damaged by cancer treatment, you may experience pain, burning, tingling, numbness, and loss of feelings in the hands and feet. Peripheral neuropathy can affect your ability to walk and could lead to a serious fall. Talk to your doctor or nurse if you are experiencing symptoms of peripheral neuropathy because you may need a change in your treatment plan in order to prevent these symptoms and lower your risk of falling.
Why Cancer Survivors May Have a Higher Risk of Injury during Falls
In addition to an increased risk of falls, people with cancer may also have a higher risk of injury if a fall does occur. Chemotherapy can cause a drop in your platelet count. Platelets control bleeding by helping your blood to clot; therefore, people with low platelets may bleed more easily after a fall. A fall in a person with a low platelet count could be serious if a head injury occurs.
In addition, osteoporosis (or thinning of the bone) can occur with some cancer treatments, steroid medications, and menopause. A person with osteoporosis is more likely to experience bone fracture or breakage during a fall, as their bones are thinner and weaker. Likewise, if cancer has spread to the bone, the bone is weaker and can break more easily during a fall.
Cancer and cancer treatments are life-changing events. Do not let a fall be one also. Hip fractures from falls are a leading cause of disability, and they could slow your cancer treatment process. Take time to understand your risk for falls and ask your doctor about steps you can take to prevent them.
What You Can Do to Prevent Falls
Falls can be prevented. These are some simple things you can do to keep yourself from falling.
Talk to Your Doctor
√ Ask your doctor or healthcare provider to evaluate your risk for falling and talk with them about specific things you can do.
√ Ask your doctor or pharmacist to review your medicines to see if any might make you dizzy or sleepy. This should include prescription medicines and over-the-counter medicines.
√ Ask your doctor or healthcare provider about taking vitamin D supplements with calcium.
Do Strength and Balance Exercises
Do exercises that make your legs stronger and improve your balance. Tai Chi is a good example of this kind of exercise.
Have Your Eyes Checked
Have your eyes checked by an eye doctor at least once a year, and be sure to update your eyeglasses if needed. If you have bifocal or progressive lenses, you may want to get a pair of glasses with only your distance prescription for outdoor activities, such as walking. Sometimes these types of lenses can make things seem closer or farther away than they really are.
Make Your Home Safer
√ Get rid of things you could trip over.
√ Add grab bars inside and outside your tub or shower and next to the toilet.
√ Put railings on both sides of stairs.
√ Make sure your home has lots of light by adding more or brighter light bulbs.
Source: U.S. Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, Division of Unintentional Injury Prevention
♦ ♦ ♦ ♦ ♦
Cassandra Vonnes, a gerontological advanced registered nurse practitioner, is the coordinator of NICHE (Nurses Improving Care of Health-System Elders) at Moffitt Cancer Center in Tampa, FL.
Top 5 Journaling Myths Busted!
by Sharon K. Swanson, MFA, MPA
As a writer working in a hospital, I have seen first-hand how intimidating a cancer survivor’s list of “shoulds” can be. That’s why I prefer to offer journaling as a comfort or a distraction during and after cancer treatment, not as one more thing you “should” be doing as a cancer survivor.
I believe that journaling – the simple act of filling a page – can be a pleasurable experience, like listening to music or coloring with crayons. In fact, I often think of a child’s coloring pages as a sort of visual diary. I would love to see adults experience the same kind of contentment and focus in their journals that children exhibit when they are coloring.
However, there are some common myths about journaling that often keep people from experiencing the joy and emotional healing that can happen when you journal. Here’s a look at my top five journaling myths – busted.
Myth #1: I need a fancy schmancy
new journal to show I am serious about
this journaling stuff.
Actually, a plain composition notebook in a favorite color and in a size that fits your lifestyle is more likely to be used than an expensive journal. You may find that a bound journal kept on a bedside table works best for you, while another person may be happy with a small notebook that slips easily into a purse.
Myth #2: I should write for twenty
minutes at the same time every single day.
Unless you’re the kind of person who thrives on routine and structure, anything goes here too. Some people find that writing in their journal first thing in the morning can focus their minds for the day ahead. Others enjoy looking back over their day by journaling just before bed, clearing the decks for a good night’s sleep. I tend to write whenever I have something on my mind. I may go days or weeks without writing. Other times, I may grab my journal several times a day as thoughts pop into my head that I want to jot down. I always keep a pen and paper handy, but others may prefer a computer or smartphone.
A journal can be so much more than a daily diary.
Myth #3: I should be documenting
Certainly, some survivors find comfort, distraction, and a measure of control in documenting their cancer experience. However, a journal can be so much more than a daily diary. Your journal can include
⇒ A gratitude list
⇒ A doodle pad
⇒ A scrapbook of photos, cartoons, or inspiring quotes
⇒ A list of questions to ask your doctor
⇒ To-do lists
⇒ Poetry or scripture
⇒ Funny family stories or jokes
⇒ Letters to family and friends who are far away
⇒ A guestbook
⇒ A dreamcatcher
Your options are endless.
Myth #4: I should write about my
emotions on difficult days.
Sure, it can sometimes help to write through difficult issues. I often find that I reach an understanding of my own feelings while I am writing about them. However, sometimes it may be helpful to write about something that distracts you from those issues until you are ready to address them. Instead, you can write about a special time or place that represents happiness to you, using all your senses to take you back to that moment. Maybe these are the emotions you want to write about today.
Myth #5: I should write to document
my experience for others.
The journaling program at Duke University Hospital is called “Write for You.” And that’s what I would encourage you to do – write only for yourself. You always have the option to share your writing if you choose. However, you could look at your journal as a safe container, a box in which you can discard painful experiences and a treasure chest where you store precious moments so you can revisit them time and again.
What are you waiting for?
Pick up a pen, a pencil, or a crayon, and write your name in your journal. Put today’s date at the top of your first page. You have begun.
♦ ♦ ♦ ♦ ♦
Sharon Swanson, an award-winning essayist and documentary film producer, is the manager of Arts & Health and Volunteer Services at Duke University Hospital in Durham, NC.
The Sun Will Shine Again
by Adrienne Slaughter
As an upbeat, active single woman living in Hermosa Beach, CA, I live a fabulous life. But my life hasn’t always been easy. When I was just 14 years old, I faced my first of two rounds with cancer. And I was given only a one-percent chance of survival.
It was the spring of my high school freshman year, and I was a state-ranked tennis player predicted to be top ten in the South. Life was awesome.
Then I began experiencing unexplained knee pain. I quickly saw a doctor, underwent a bone scan, and received a biopsy. Later that night, I learned that the pain in my knee was osteogenic sarcoma, a childhood bone cancer.
The following Monday, during surgery to place a rod in my knee, my doctors discovered that my tumor had spread six inches over the weekend. Six inches! They were forced to amputate my right leg above the knee. I started physical therapy just two days later.
Today, I not only play tennis, but I also rock climb, ski,
snorkel, and dance – all with my prosthetic leg.
Exactly one week after my surgery, I celebrated my fifteenth birthday. Yes, I was still in the hospital, scheduled to start radiation to my lungs that afternoon. But that didn’t stop me from celebrating. Within an hour, I was presented with not one but three birthday cakes! And as amazing as that was, the best thing that happened that day was my friends accepting me, face-to-face, without a leg. Wow.
I fully recovered, life went on, and it was fabulous.
In 2009, I had my first mammogram. You guessed it – cancer, again.
The radiation therapy I had received when I was 15, the very therapy that helped save my life 28 years earlier, was the cause. But there was some good news: my breast cancer was stage zero, the earliest stage, and neither chemo nor radiation was needed. With a double mastectomy, I was 100-percent cancer-free. Once again, I fully recovered, life went on, and it was fabulous.
And while my professional tennis career never happened, I achieved much more. Today, I not only play tennis, but I also rock climb, ski, snorkel, and dance – all with my prosthetic leg. I have an incredible team of support around me, and I have faith. Yes, faith in God, but also faith in myself.
It’s that faith in myself that helps me overcome obstacles in life, including cancer. And when a thunderstorm rolls in, I remind myself that there’s a sun behind those clouds.
It will shine again – maybe not today or tomorrow – but it will shine again.
♦ ♦ ♦ ♦ ♦
Adrienne Slaughter is a professional speaker and published author who inspires and motivates audiences nationwide. As a two-time cancer survivor, she shares her stories with a smile, attesting how a positive attitude helped her survive both rounds with cancer.
For more inspiration from Adrienne, visit her website, AdrienneSpeaking.com.
Women, Cancer, and Sexual Health
by Lynn Wang, MD
"What defines you?" That was my opening question for the women of a breast cancer support group where I was invited to speak about cancer and sexual health. In the past, I had mistakenly kept the question too broad, and the answers were various litanies of stage II cancer, cancer-free for three years, stage IV, metastatic to the bone … This time, I reframed the question: No, not what defines your cancer. What defines you?
Their answers, and their fierceness, still touch me to the core: I am a mother … a daughter … a wife … a grandmother … a friend … What defines me is my relationship to my children … friends … partner … family …
It struck me that what defines us all is connections – to ourselves and to others. Connections are also the foundation of sexual health.
The way I describe sexual health is this: Think of your sexual relationship as an egg. The outer shell is the physical connection. Some important components of this are feeling good about the physical aspects of intimacy and communicating what works for you.
Touch is important because it stabilizes the system – it provides a physical confirmation of the emotional connection.
The yolk of the egg is the emotional connection. The way you may experience this differs from woman to woman. Some women have described it as “feeling like we’re in the same boat, like we matter to each other, or like we’ve got each other’s backs.”
And last but not least is what connects the yolk and the outer shell, which is touch. Think of touch as a continuum, ranging from nonsexual touch, such as a hug or a peck on the lips, to sexual or erotic touch. Touch is important because it stabilizes the system – it provides a physical confirmation of the emotional connection. It can offer connectivity when sexual activity is not feasible.
These physical and emotional connections are important to many women and couples. Studies have confirmed that cancer survivors rate intimacy as an important part of their quality of life. And this finding holds true regardless of age, cancer stage, or cancer type.
Many women have told me that, since their cancer treatment, they don’t feel good about themselves or their bodies. Or that sex hurts. For some women, these problems began even before cancer came along. Either way, these women and their partners stopped touching. One partner discouraged physical intimacy (maybe because of low self-esteem or because cancer treatments left them exhausted), then the other partner grew tired of being rejected, and this then began to fray their emotional connection.
Some people can work this out on their own; others get stuck. And for good reason – cancer can complicate the already-complex emotional and physical interactions involved in maintaining a healthy sexual relationship.
If you’re feeling stuck, there is good news. More resources than ever before are available for women with cancer who are dealing with sexual health issues. Cancer care teams are now beginning to recognize the importance of sexual health in the overall plan of care. So ask your doctor for resources and referrals to sexual health professionals, support groups, or educational materials that can help.
One of the many lessons I have learned from cancer survivors is that everyone’s journey is truly their own. And, cancer or no cancer, our relationship to ourselves and our partners is a work in progress. Different people are drawn to working on different aspects of “the egg,” and part of that process involves acknowledging what is working and what is not working for you.
Now may not be the right time for you to work on your sexual relationship. The most important thing is to take care of yourself and your health. But when you are ready to address sexual health issues, a good starting point is to understand where you came from, where you are, and where you want to go.
And so we end where we began: What defines you?
♦ ♦ ♦ ♦ ♦
Dr. Lynn Wang is a gynecologist and American Association of Sexuality Educators, Counselors, and Therapists–certified sexuality counselor and educator at Main Line Gynecologic Oncology in Wynnewood, PA.
To find certified sexual health providers in your area, visit the American Association of Sexuality Educators, Counselors, and Therapists website at AASECT.org.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, September/October 2015.
Occupational Therapy Helps Cancer Survivors Live Life to Its Fullest
by Brent Braveman, PhD, OTR/L, FAOTA
According to the American Cancer Society, the number of cancer survivors living in the United States will grow to more than 18 million by 2022. While the good news is that more and more people are surviving cancer, thanks to early detection and treatment advances, many of these survivors will face ongoing challenges due to the harsh toll these life-saving treatments can take on the body. After cancer treatment ends, many survivors are left to struggle with fatigue, muscle weakness, pain, neuropathy, physical limitations, and emotional trauma, among other difficulties.
This is where cancer rehabilitation comes in. The purpose of cancer rehabilitation is to address these challenges in order to improve cancer survivors’ quality of life and help them regain function. Many cancer survivors will need some type of rehabilitation either during or after cancer treatment.
One common type of cancer rehabilitation is occupational therapy. Occupational therapists work with cancer survivors to help them regain the ability to perform the everyday tasks of living. These daily tasks are called occupations. They include activities of daily living (grooming, hygiene, sexual activity, swallowing, bathing, dressing) and instrumental activities of daily living (taking care of others, shopping, meal preparation, driving, home and financial management), as well as participating in school or work, recreation, socializing with others, relaxation, and rest. Occupational therapy is different from physical therapy in that, while physical therapy focuses on helping your body regain strength and mobility, occupational therapy is more concerned with overall function and improving your ability to navigate your daily life.
Occupational therapists work with cancer survivors to help them regain the ability to perform the everyday tasks of living.
What to Expect from an Occupational
No matter what type of cancer you have or the extent of the challenges you are facing, an occupational therapist can tailor a rehabilitation plan to meet your exact needs. Here’s what you can expect when you begin an occupational therapy program during or after cancer treatment:
After cancer treatment, simple tasks like doing laundry may become exhausting endeavors. Occupational therapy can help.
♦ The first thing your occupational therapist will do is conduct an individualized evaluation, during which you and your therapist will set your goals for therapy.
♦ Next, your occupational therapist will work with you to develop a customized plan of care to help you reach those goals. Your care plan will focus on improving your ability to perform the daily occupations (or activities) most important to you.
♦ Once your care plan is in place, you will begin therapy sessions aimed at helping you master the daily occupations you’ve identified as most important, such as bathing, dressing, meal preparation, or managing your home. Your therapy sessions may include strategies to improve physical deficits (such as exercise programs to increase strength or range of motion), compensate for physical limitations (such as using assistive equipment like a reacher or a tub bench), or modify activities or elements of the environment (such as learning simpler ways to perform tasks or reducing obstacles in the home or office). Other strategies may address the emotional impact of cancer, cancer-related fatigue, decreased endurance, visual impairment, chemo brain, or lymphedema.
♦ You will continue occupational therapy sessions as long as needed to help you return to a satisfactory level of function. Once your therapy sessions are completed, your occupational therapist will provide you with an at-home care plan to help you maintain the gains you achieved during therapy.
Whether you are in a hospital or at home, you can use occupational therapy to regain a full, functional life after cancer treatment. Not only can occupational therapy support you in mastering everyday tasks like bathing or dressing yourself, but it can also help you get back to doing the things you enjoy, like swinging a golf club or playing an instrument. In short, occupational therapy can help you live life to its fullest.
♦ ♦ ♦ ♦ ♦
Dr. Brent Braveman, an occupational therapist, is the director of Rehabilitation Services at the University of Texas MD Anderson Cancer Center in Houston, TX.
For more information on how an occupational therapy practitioner can help you live life to its fullest, visit the American Occupational Therapy Association website at AOTA.org.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, September/October 2015.
The Daily Zoo
by Chris Ayers
On the one-year anniversary of his cancer diagnosis, Hollywood character designer and artist Chris Ayers decided to commemorate it by starting a sketchbook he called The Daily Zoo. His goal was to draw an animal a day for a year, hoping it would challenge his imagination and give him the opportunity to celebrate the gift of each healthy day by doing something he loves: making art. He succeeded in his goal, drawing an animal each day for an entire year – and beyond. Nearly 10 years later, his Daily Zoo drawings (along with commentary about his cancer experience) have been collected into a series of books called The Daily Zoo, with a portion of the proceeds going to cancer charities and research. This is his story – in his own words.
When I started drawing an animal a day in 2006 on the one-year anniversary of my April 1st leukemia diagnosis (that’s right, I was told that I had cancer on April Fools’ Day!), I certainly had no idea that I would still be adding to this collection over three thousand days later. In fact, at that time, I wasn’t sure whether I would still be alive nine years later. Shortly out of treatment and having only recently begun to feel back to “normal” physically, I was not spending my days looking years ahead. Instead, I was more focused on appreciating the day at hand and slowly re-acclimating to some of the activities I had enjoyed pre-cancer. Perhaps more important, much of my conscious thought – and probably a lot of my subconscious thought as well – was devoted to trying to process and more fully understand what had just happened to me. The journey of the previous year had been a doozy: full of grave uncertainties, pendulum-like swings across the emotional spectrum, and an inordinate number of needles. I was confused. I was also curious. Curious to discover how that journey had affected me, and curious to start getting to know this new me: Chris Ayers, cancer survivor.
Cancer brought both complexity and clarity to my life. It trimmed away the fat from my previous definition of priorities.
So much has happened since I was treated for leukemia and given a new lease on life. I’ve gotten married and, through the miracle of in vitro fertilization, become a father. And in terms of The Daily Zoo, it has been a most unexpected journey. Along the way I’ve been introduced to beautiful and in- spiring people, including fellow cancer survivors, artists, and fans from around the world. It has led to such extra-ordinary opportunities like exhibitions of my work in Paris and Italy and speaking engagements both here in the U.S. and abroad. It has also introduced me to cancer-related organizations such as the Mayo Clinic, the Leukemia & Lymphoma Society, and Be the Match (operated by the National Marrow Donor Program), and I have been fortunate to collaborate with them in raising funds and awareness to fight this disease.
“ARE YOU DANCING TODAY?” While not officially one of the daily sketches from The Daily Zoo series, this polychromatic hippo was done for the MY Daily Zoo drawing activity book that was published a few years ago. I actually have him hanging on the door to my studio. It’s a subtle reminder for when life gets overly busy and stressful: Am I dancing today?
But one of the most rewarding results of sharing my experience of using art as a healing tool has been that it has helped others in their own healing and artistic journeys. The Daily Zoo project was conceived as a healing tool solely for myself. It began as a very intimate daily exercise between my imagination and a pencil and paper. I was calling upon my lifelong love of drawing animals to help bring a new dawn to the darkness that cancer had cast. Publication of the drawings was never the original goal, but when that opportunity arose, I jumped at the chance.
Through the books, to my sincere amazement, the Zoo has now become a healing tool for others as well. Many cancer survivors have found the humor and heart of the books to be a welcome distraction from the rigors of treatment, as well as a source of hope for recovery. All of this has been gratifying, of course, but I also find that having my work resonate so deeply with others is humbling, and can be overwhelming at times.
The Daily Zoo may have inspired some of you, but you in turn have inspired me with your comments and your own stories of facing challenges. These experiences are healing for me in that they reinforce my decision to do the Zoo and to share my journey and art with others. The more positive influence my work may have, the more the scars of my own cancer journey seem to fade.
The healing process from my battle with cancer has been a lengthy one. I was fortunate that the physical healing took only about a year. The emotional, mental, and spiritual aspects, however, have taken much longer. In fact, they’re probably still taking place to some degree, at least in the sense of trying to understand how my “dance with the cance” fully affected me.
“MOUTHS TO FEED” This was drawn on the day that my wife and I met with a fertility doctor and decided to proceed with trying to start a family through IVF. Gulp! What were we getting ourselves into?
In some regards I had to confront cancer by myself. A lot of it was an internal mental ordeal and, as much as loved ones tried to help, it was not their bloodstream being ravaged by leukemia cells, nor were they participating in a wrestling match with their own mortality. The chemo wasn’t making them nauseous or causing their hair to fall out (though two good friends did shave their heads in solidarity).
But at the same time, I was not alone – far from it, in fact. I’ve probably never felt less alone than when I was fighting cancer. My girlfriend (who is now my wife), family, friends, coworkers, employers, former teachers, and classmates – not to mention the vigilant UCLA medical team – all surrounded me with support and encouragement. I discovered a great deal of strength from deep within – some of which I didn’t yet know I possessed – but I also pulled an equal if not greater amount of strength from those around me. I can’t imagine how much harder the journey could have been without this support system. The majority of the time, I felt we were all in this together.
Healing together is cathartic. I’ve witnessed this at events when survivors and caregivers tell their stories. There is healing power in giving voice to the pain, especially amongst those who can relate. People sometimes ask if I’m comfortable talking about my cancer experience. I imagine they are wondering if perhaps it is too painful or private, but I enjoy telling my story. It’s a continuation of my healing and also a reminder of where I’ve been and what I’ve been through, which gives me additional strength and fuel for where I’d like to go.
In Vitro We Trust
Leukemia is indiscriminate, unforgiving, and treacherous. In short, it’s one nasty beast. The lifesaving treatments I had, including high-dose chemo and total body radiation, were not much kinder. Besides the painful side effects, they left their mark by rendering me sterile. Fortunately, my oncologist strongly recommended that I consider banking sperm before beginning treatment. He even delayed the start of my first round of chemo by a few days so I could do just that. My wife, Thasja (who I was dating at the time), and I will be forever grateful to him, as the idea of banking was not even on our radar. I had just found out that I had cancer. I was not thinking about the possibility of never becoming a father. The idea of missing out on 3 AM diaper changings was the furthest thing from my mind. I just wanted to start fighting back against the leukemia as hard and as quickly as I possibly could.
Fast-forward seven years: I was in remission and feeling good. Thasja and I had gotten married and were now seriously considering thawing a few of the “man-sicles” we had on ice and trying to start a family. It was not a light decision by any means. Beyond the emotional, physical, and financial (ka-ching!) investment in the in vitro fertilization (IVF) process, we had to think about how this decision might impact our lives. With diaper changes come life changes. Were we ready for that? Were we prepared to make the required commitment of becoming parents and caring for a child? After much discussion, we came to the answer that I think had been buried within us all along. We just had to dig a little to unearth it. And that answer was, simply, “Yes.” IVF? Bring it on! Months later, Thasja and I welcomed a healthy baby boy.
Are You Dancing Today?
Amidst the avalanche of emails, texts, and bills ... the calendar laden with meetings, deadlines, and other responsibilities ... the cacophony of traffic jams, parking tickets, and a constant stream of distressing events on the nightly news, it can be a continuous challenge to remember what is truly important in life. What matters. What brings joy. What brings music to the soul. While each person’s list will vary, if you start off with family, friends, health, meaningful work, and fulfilling, creative play, you’re in pretty good shape.
I hope that you will continue to find ways – even small ways – to bring your passions into your daily life. And dance on!
♦ ♦ ♦ ♦ ♦
Chris Ayers, an acute myelogenous leukemia survivor, is a character designer and concept artist based in Los Angeles, CA. He has been involved in such film projects as Penguins of Madagascar, Star Trek, and Men in Black II. Chris has had five books published by Design Studio Press in The Daily Zoo series, including The Daily Zoo, Vol. 3: Healing Together, from which this article was adapted.
To learn more about Chris and The Daily Zoo, visit ChrisAyersDesign.com
How to Tell Your Kids That You Have Cancer
7 Essential Questions You’ll Need to Answer
by Barbara J. Golby, LCSW-R
For any parent diagnosed with cancer, how your diagnosis will affect your children is a top concern. This is especially true for parents of young children or teenagers still living at home. Not wanting to worry or upset them, many parents feel unsure about how to tell their children they have cancer. Some even question whether they should discuss it with their children at all.
The truth is, telling your children that you have cancer will likely be harder for you than it is for them. Having this difficult conversation will force you to confront your own fears and worries about not being there for them. And while you may think that by avoiding the discussion, you are protecting your children from that worry and fear, the opposite is usually true. When handled with sensitivity and care, talking with your children about cancer can actually reduce their anxiety levels.
There are some essential questions that most children and teenagers will want answered when you tell them you have cancer. Even if they don’t ask, you should be prepared to give your children age-appropriate answers to these seven essential questions.
What is cancer?
Most children will need at least a basic explanation of what cancer is. Keep your answers simple and tailored to your child’s developmental level. Be prepared to elaborate for very curious children or for older children and teens. If your child asks a question you don’t know how to answer, it’s OK to say, “I don’t know, but I can find out for you.”
The truth is, telling your
children that you have cancer
will likely be harder for you than it is for them.
How did you get cancer?
This can be a difficult question to answer since we often don’t know why people get cancer. Be honest with your children about the uncertainties of cancer. You may not have all the answers, but you can be there for them as you face the unknowns together.
Did I do something to give you
Reassure your children that they did nothing to cause your cancer, even if they don’t ask. And reiterate this point as often as needed for them to internalize it.
Will I get cancer too?
Explain to your children that you can’t catch cancer like a cold. They can still hug and kiss you. Cancer isn’t contagious.
Who will take care of me if you can’t?
Children are naturally self-focused. They may worry about how your cancer will affect their lives, and this is a normal concern. Help alleviate their anxiety by preparing them for how their day-to-day life is going to change. Lay out a plan for who will take them to violin lessons, make dinner, or get them ready for bed if you cannot.
Are you going to die?
Every parent with cancer dreads this question. Rather than fearing it, try to view it as an opportunity to connect with your children as they open up to you about one of their biggest fears. Let them know that you welcome their questions, no matter how difficult. Reassure your children that most people who have cancer do not die and that you are getting the best treatment possible to fight the cancer. If your disease is more advanced, let them know that you and your doctors are doing everything you can to stay well. Reassure your children that you will keep them updated on how things are going.
Who can I talk to about this?
Your children will likely not ask you this question directly. Regardless, it’s important to let them know that it’s okay to talk about cancer, with you or with another trusted adult. Give them the names of other adults they can talk to if they find it difficult to come to you with their questions and concerns. You may even want to schedule regular family meetings to give medical updates, answer questions, and talk about how things are going.
Telling your kids that you have cancer is the first of many conversations you will have with them about your illness. Most children and teens do want to be included in family discussions about their parent’s cancer. When you talk openly and honestly with your children about your cancer, it lets them know they are part of the process, builds trust within the family, and helps them feel less alone.
♦ ♦ ♦ ♦ ♦
Barbara Golby is a senior clinical social worker at Memorial Sloan Kettering Cancer Center in New York, NY. She has worked for 18 years with families and children living with serious medical illness.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, September/October 2015.
The Aftermath of Cancer
by Val Jones
Four years ago, I was diagnosed with breast cancer. I did my best to muddle through treatment – mostly clinging to the notion that it would all be over soon and I’d finally be able to put it behind me.
However, the “end” I so fervently awaited never actually came. Sure, treatment ended, but checkups ensued. That, of course, was accompanied by paralyzing fear that I’d relapse. Then there was the survivor’s guilt. Not to mention the drawn out reconstruction process.
To make a long story short, I found myself coping with cancer long after I was officially declared “cancer-free.”
In the days, and even months, following the end of my treatment, it was difficult to return to life as usual. It seemed like everyone around me had celebrated my clean bill of health and moved on, leaving me to cope with the aftermath alone.
To make a long story short, I found myself coping with cancer long after I was officially declared “cancer-free.”
It didn’t take me long to realize that there’s more healing to be done after cancer than just the obvious physical healing. I had to learn to accept a new normal for my life, one that melded the “new me” with my pre-cancer self. How did I do it? Well, I don’t claim to have all the answers, but here are three things that have really helped me along the way:
Reaching out to others who have similar experiences
After my cancer diagnosis, my initial response was to avoid forging new friendships, but after treatment ended, I was more open to mingling with others. It was then that I realized that the camaraderie with other survivors was the missing piece to my full recovery. While I couldn’t have made it through this ordeal without the support of my friends and family, it was imperative to find others who’d traveled my path and could offer emotional support through my readjustment phase and the future beyond.
Granting myself permission to experience – but not dwell on – my bad days
Trying to live up to that “keep it positive” expectation often put on cancer survivors is exhausting and, quite honestly, fake. However, when I “keep it real,” it allows me to actively grieve over how my life has changed since cancer, and helps me move closer to accepting those changes. Not only is the occasional meltdown an emotional release, but the process of working through it also helps me to rebuild myself as a stronger person.
Investing in the
recovery of others
Two years ago, I created Victorious Val & the Breast Cancer Crusaders, a community of encouragement and kindness for cancer survivors, co-survivors, and supporters. Through this, I’ve found that the benefits of investing in others are twofold. Not only do I help other survivors cope with the aftermath of cancer, but by investing in others, I also find healing for myself.
Over the past four years, I have rediscovered myself, as well as a new level of joy, but it hasn’t been without effort and practice. While cancer revealed blessings, gave me a new, healthier outlook on life, and even fueled my passion for living, it also left me confused and often angry. However, I have found ways to cope.
While there’s no manual for dealing with cancer’s aftermath, there are things you can do to regain your sense of self after a health crisis. Like anything, it takes time to accept change, adapt to it, and find a new normal for your life, but countless survivors have successfully navigated the aftermath of cancer. I believe you can too.
♦ ♦ ♦ ♦ ♦
Val Jones, a breast cancer survivor, teaches middle school English in Austin, TX, and is a freelance writer. Founder of Victorious Val & the Breast Cancer Crusaders, she helps women through the emotional ups and downs of cancer. When Val’s not writing or actively advocating in the cancer community, she dedicates herself to fitness and living a healthy lifestyle.
Star of HGTV’s Flip or Flop Tarek El Moussa Takes on Thyroid Cancer
by Laura Shipp
When it comes to raising awareness, television personalities have a platform that allows them to reach millions. Take Katie Couric, for example. After she underwent a colonoscopy live on national television in March 2000, colonoscopy rates nationwide jumped more than 20 percent. She is just one of the many celebrities who have prompted viewers to take action regarding their health.
However, HGTV host Tarek El Moussa’s story is a complete reversal. That’s right. A viewer spurred his visit to the doctor. Being a television star certainly has its perks, but for Tarek, it may have been lifesaving.
More than 20 million people have tuned in to HGTV’s Flip or Flop, which follows the husband-and-wife real estate team of Tarek and Christina El Moussa as they flip houses in Orange County, CA. Of those fans, one particularly alert viewer, registered nurse Ryan Read, noticed a troubling lump on Tarek’s neck while she was watching a television marathon of the show. Concerned, she emailed the show’s production company urging him to have his thyroid checked.
Her words of concern hit Tarek hard, as they served to confirm a two-year suspicion that something was off with his health.
“I had a bad feeling when I received that email,” Tarek admits to Coping. “For two years, I had been experiencing tightness in my neck, and I was constantly clearing my throat. I had gone to my doctor twice and was told it was nothing, just allergies. After I read her email, I went to the doctor – a new doctor – the next day and insisted on further testing.”
Treatment & Side Effects
Tarek’s initial ultrasound results were inconclusive, as is common with thyroid cancer, but the decision was made to remove the lobe housing the lump, just in case it was cancerous. It would be a simple one-hour procedure.
Four hours later, Tarek awoke from surgery with his thyroid completely removed and doctors telling him he had thyroid cancer that had spread to his lymph nodes. He would need radioactive iodine therapy to destroy the cancerous cells remaining in his body. And because his body would give off radiation for some time afterward, Tarek had to be isolated from his wife, as well as their three-year-old daughter, Taylor, to protect them from radiation exposure. In total, he spent more than two weeks away from home, and when he returned, he had to limit the time he spent with his family.
On Getting a Second Opinion: Advice from Tarek
"Because I went to my primary care doctor twice about the tightness in my neck and was dismissed, I would not have gone a third time. If that viewer had not reached out to me, I would have never done further testing. My advice to others is this: If you feel something is wrong, talk to as many medical professionals as you can. It’s better to get opinions from five doctors rather than one who could make a mistake. Ultimately, you know your body. Trust your gut."
“It was a very lonely time for me,” Tarek admits. “The hardest part through this entire process was being away from my wife and daughter.”
Another struggle Tarek faced was constant fatigue. In fact, more than two years later, it’s a battle he still fights today.
“I have lost a lot of energy. I’m very tired all the time,” Tarek reveals. “Every day is a struggle because I feel jetlagged. But that doesn’t prevent me from doing what I need to do; it just makes it more difficult.”
Despite the cancer diagnosis, the difficult treatment, and the lasting side effects, Tarek has tried to keep his life as close to normal as possible. “I did not want cancer to ruin my life,” he asserts, adding that he filmed up until the day of his surgery and started filming again as soon as he got his voice back.
Finally, Some Good News
Tarek’s cancer diagnosis came at a time when he and Christina were trying to have a baby. Doctors told the couple that the radioactive iodine needed to eradicate Tarek’s cancer could affect his fertility, so they made the decision to bank his sperm before he began treatment. Christina would later undergo in vitro fertilization – which she admits was a difficult process. After two failed attempts at IVF, the El Moussas joyfully welcomed their second child, a baby boy named Brayden James, into the family on August 20, 2015.
“The number-one thing I have always wanted in my life is a family,” Tarek says. “I am lucky to have accomplished that, even with cancer trying to get in the way.”
Looking to the Future Over the past two years, this now family of four has braved a cancer diagnosis and treatment, endured difficulties with IVF, and finally welcomed a long-awaited second child into the family. Christina tells Coping, “Our life has changed a lot, but all for the better. I love my family and the life we have created. We’ve been through a lot, but it’s brought us even closer together.”
Tarek echoes that sentiment, stating, “Christina is my rock and was by my side and supportive throughout the entire process. When dealing with cancer, you must have a strong support team.”
A cancer diagnosis can bring uneasiness, uncertainty, and fear, but it also can give rise to a new appreciation for life, or even offer up a new perspective. Tarek explains that he is now cancer-free and that, with every day that passes, the odds of recurrence drops. He also says that his diagnosis has given him a new, healthier outlook on life.
“I used to think I was invincible, that nothing could happen to me,” Tarek says. “Well, it turns out cancer can affect anyone; it doesn’t matter who you are. Since my diagnosis, I have changed my lifestyle to a healthier one. Sometimes I think that cancer turned my life around.”
Christina, for one, is thrilled about this new change. “I was always super health-conscious,” she says, “but now Tarek is too, which means we are more on the same page with our lifestyle.”
The El Moussas are excited for the future. They say they’re looking forward to raising their two children and continuing to film new episodes of Flip or Flop. However, they admit they are taking things a bit slower than they were before Tarek’s diagnosis. But Christina is quick to point out that slower doesn’t mean uninteresting.
“Who knows what the future holds for us,” she says, “but in our life there is never a dull moment, so I’m sure it won’t be boring!”
♦ ♦ ♦ ♦ ♦
You can catch new episodes of Flip or Flop Thursdays at 9pm/8c on HGTV.
by Mary Dunnewold
In general, I don’t think about cancer in terms of lessons learned, because I believe cancer is just stupid and unlucky, not a golden opportunity to improve your life. Whether we’ve been diagnosed with cancer or not, all of us should live every moment to its fullest because life is, in fact, short. I believed that before I had cancer, and I think I did a good job putting it into practice.
But a few months after I finished my treatment for breast cancer, I ran up against that “life is short” lesson with a surprising new intensity. Specifically, the lesson was this: Life is too short to finish War and Peace.
When my hyper-intellectual book group decided to finally go for it and tackle War and Peace last winter, I was game. I like a challenge, and I believe that reading “big books” builds character.
Life is too short to finish War and Peace.
I almost never abandon a book in the middle. However, after encountering cancer, I had become more intensely aware of how fleeting life is. And a few hundred pages in to War and Peace, a persistent question kept popping up in my mind: Do I really want to devote any of my remaining moments to an activity as boring as this? I put the book down, and I haven’t picked it back up.
Other “life’s too short” moments require a bit more thought, though, and a little balance. I contemplate the second (or third) cookie, the warm chocolate lava cake on the dessert menu, or another margarita, and I think to myself, Which principle wins here: Live life to the fullest in every moment (no matter the consequences), or live healthily to live longer? Clearly, I can’t always choose both.
These days, decisions like these always wind themselves back to cancer and what it means to have endured it. I know that if I had terminal cancer, I would eat the cookie and order another margarita. I decided that much when I was first diagnosed.
But as far as I know, I don’t actually have terminal cancer. And I do want to live a long time, at a reasonable weight, and in reasonably good health. So my idea that we should all live like we have cancer doesn’t stand up to practical scrutiny. We can’t be simultaneously nearsighted – our eyes focused sharply on the distant horizon – and farsighted – eyes narrowed in on the still life in front of us. We have to live somewhere in the middle, finding our bliss well enough every day, but mindful of the fact that we need to have the stamina to make it to the end.
So now when I’m faced with some irritating but mundane task, like getting that last bit of expensive moisturizer out of the tube or searching for airline tickets just a little bit cheaper, I think: If I had terminal cancer, I would not do this. Then I allow myself to not do it anyway, because this moment isn’t any less valuable just because my death is probably years away rather than months.
In the end, I can’t plausibly say that my life was not changed by cancer, although that’s what I want to claim. I’m an unreliable narrator in that respect; my confirmation bias chugging away like everyone else’s.
My life was irrevocably changed by cancer. But it is also changed by getting out of bed every morning and tackling whatever comes down the pike. I just have to remember to embrace the lessons with gratitude, alongside everything else on my gratitude list.
♦ ♦ ♦ ♦ ♦
Mary Dunnewold is a breast cancer survivor living in Northfield, MN.
Infections Are Serious Threats for People with Cancer
Learn How to Protect Yourself
by Linda Graviss, MT, CIC, and Roy Chemaly, MD, MPH, FIDSA, FACP
Did you know that your body’s number-one defense against infections is often compromised when you have cancer? Both chemotherapy and radiation therapy can weaken your immune system, lessening its ability to put up a good fight against the germs that cause infections. Moreover, surgery and other medical procedures break or damage the skin – your body’s primary infection defense – increasing your risk for developing infection.
Your weakened immune system and damaged skin barrier, combined with increased exposure to healthcare settings during cancer treatment, also puts you at risk for acquiring nasty germs like MRSA and C. diff that can’t easily be treated with common antibiotics. However, there is good news. You can take action to protect yourself.
The most effective way to prevent the spread of germs is also the simplest – good handwashing. It’s important to wash your hands thoroughly and often. (See sidebar for an explanation of the proper technique.)
Be especially careful in the kitchen. It harbors more bacteria than any other room in the house.
You can also use an alcohol-based hand sanitizer gel to clean your hands when getting to a sink is inconvenient, such as during a doctor’s office visit. Use a quarter-sized drop of the gel and rub your hands together (just as you would when washing with soap and water) until the gel is dry. It’s a good idea to always carry a small container of hand sanitizer with you whenever you are away from home.
Protect Yourself at Home
No matter how often you clean your house, you won’t be able to completely rid it of germs. So it’s important to limit your exposure.
Wash your hands whenever they are dirty, before you eat or drink, and after blowing your nose, sneezing, or using the restroom. Always keep your hands away from your face. Germs on your hands can get directly into your system through the mucous membranes in your nose, eyes, and mouth. When you have to cough or sneeze, cover your mouth and nose with a clean tissue, or make a habit of coughing or sneezing into the crook of your arm. Also, don’t share personal hygiene items like toothbrushes, towels, makeup, or creams.
Be especially careful in the kitchen. It harbors more bacteria than any other room in the house. Always wash your hands thoroughly before preparing foods, and be extra vigilant about washing them after handling raw meat. Never share eating utensils, dishes, or drinking glasses. Follow your doctor’s orders about eating raw fruits and vegetables. If you are allowed to eat raw foods, make sure to wash them thoroughly.
Keep your home as clean as possible. Fix leaks and any water damage that occurs right away, as wet surfaces can be a breeding ground for mold, mildew, and other germs. When you have visitors, remind them to cover their coughs and wash their hands upon entering your home.
Fight Germs by
Washing Your Hands …
the Right Way
Step 1: Start by wetting your hands with warm water.
Step 2: Apply enough soap to form a good lather.
Step 3: Rub your hands together for 15 to 30 seconds. The rubbing action helps to remove the germs from your skin.
Step 4: Make sure you scrub all your fingers, your thumbs, your palms, and the backs of your hands.
Step 5: Don’t forget to scrub under your fingernails. That’s where germs love to grow.
Step 6: Rinse your hands with warm water.
Step 7: Dry with a clean towel.
Protect Yourself in Public
If your white blood cell count is low, stay away from crowded places, and wear a mask over your nose and mouth when you do leave your home. Steer clear of construction areas where large amounts of dust and dirt may be in the air. Avoid contact with people who have symptoms of cold, flu, or other infections.
Protect Yourself in Healthcare
A clean healthcare environment is important for all people, but especially for those who are undergoing cancer treatment. Germs can live on environmental surfaces and medical equipment in hospital rooms for a long period of time. In addition to the current standard disinfection practices, new technologies are being developed to decrease infection-causing germs in healthcare settings, which is good news for cancer survivors. However, it’s still important to educate yourself about your hospital’s disinfection policies and to ensure that any healthcare provider you encounter cleans their hands with soap and water or a waterless alcohol sanitizer before coming in contact with you.
Work with your doctor to create an infection defense strategy. Ask him or her how your treatment will affect your immune system, what activities you should avoid, and what you can do to protect yourself from infection. You are your own best defense against infection. Learn the steps to protect yourself – and follow them.
♦ ♦ ♦ ♦ ♦
Dr. Chemaly is a professor of medicine, a fellow of the Infectious Diseases Society of America and the American College of Physicians, and the director of the Infection Control Section at The University of Texas MD Anderson Cancer Center in Houston, TX. Linda Graviss is the manager of the Infection Control Section at MD Anderson and is board certified in Infection Control.
Writing Your Cancer Journey
by Ali Zidel Meyers, MSW
The cancer center feels more like a modern art museum than a hospital. Hardwood floors bathed in natural light and a piano player greet me at the entryway. If not for the thin, bald cancer survivors ambling amid the ubiquitous scent of sanitizer, I could easily forget where I am.
I walk up the white marble stairway – 30 steps or so – to see if I can do it. Climbing these steps has become a ritual that serves as a barometer of my wellness on any given day. I pause at the top to catch my breath and find the room.
A large wooden door, propped open with a black chair, leaks the sound of soft voices and laughter. I walk in tentatively. Dr. Sharon Bray stands at the head of the table, laying out handouts and pens. I know her face from the website. She is taller than I expected – towering a good foot above me – with an auburn bob and a flowing silk jacket.
“You must be Ali,” she says, her warm smile penetrating my nervousness. “I’m so glad you’re joining us. Please take a seat anywhere; we’ll start soon.” This simple introduction is a magic doorway to an experience that will prove as essential to my healing as surgery and chemotherapy.
When we shape our stories, we’re empowered
to take ownership of them.
I soon come to rely on the honest, raw writing from “the belly of the beast,” as Sharon would say, and the supportive, caring feedback of strangers. We’re given prompts, then timespans to put down on the page what has awaited release from our minds and hearts. The stories, fears, gratitude, and confusion brought to our consciousness by cancer are finally free to safely unfurl in the sacred space of the group.
Through this writing group, I begin to feel less alone. I come to know myself and others in new ways. I develop a greater understanding of certain aspects of my cancer experience, and I learn to accept the unanswerable questions.
I continued to write with Sharon and the group for a few years, not only making sense of cancer but also tapping into my own creative well. Discovering my voice and passion for writing as a therapeutic tool, I went on to train with Sharon and other experts in using writing for healing.
Try this prompt now:
Think about an aspect of your cancer journey that is a mystery to you. Perhaps it is a specific question: Why did I get cancer? How will this change my life? What now? Set a timer and write for 15 minutes – to discover what you don’t know, or perhaps what you didn’t realize you knew. It could be that there’s an answer or understanding deep inside you just waiting for permission to speak.
Researchers have found interesting links between writing and wellness, especially with certain types of healing writing. Unlike ruminative writing, healing writing shapes difficult experiences into a narrative, with a beginning, middle, and end. This structure can help survivors make sense of what happened, as well as potentially reframe it. When we shape our stories, we’re empowered to take ownership of them.
Healing writing on its own can be a useful tool in cancer recovery. However, practicing healing writing with a safe, supportive community is a powerful combination. This shared experience can help survivors feel bolstered, affirmed, and united. If you would like to give healing writing a try, here are a few tips to help you get started:
On Your Own
⇒ Keep a journal. If you’re too tired to write a full entry on a given day, jot a list of three to five things for which you’re grateful.
⇒ Write yourself a “how to survive cancer” guide. It can be as simple as a short poem or page of instructions, or as complex as a chapter book.
⇒ Check with your local cancer treatment center to find out what complementary programs they provide. Many hospitals and clinics are expanding their offerings to include healing writing.
⇒ If traveling to a group writing session is not possible, consider joining an online writing group.
Cancer brings many questions and changes. Survivors often find themselves swimming through a sea of unknowns – questioning everything from treatment options to their own existence. Writing can help you navigate the journey.
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Ali Zidel Meyers is a cancer survivor, writer, mother, and teacher. She leads an ongoing workshop, called Writing Your Cancer Journey, at the Stanford Supportive Care Center in Stanford, CA. Ali has taught writing for over 10 years and is currently working on a memoir about her experience as a young colon cancer survivor.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, July/August 2015.
The Ten Commandments
of Coping with Cancer for Survivors and Caregivers
by William Penzer, PhD
I. Find a Medical Team in Whom You Have Confidence and with Whom
You Feel Comfortable
Putting together your medical team is perhaps the most important decision you will make regarding your cancer treatment. It is paramount to find a team of experienced healthcare professionals that you trust. All kinds of obstacles may stand in your way – like insurance restrictions or a lack of treatment centers in your area – but don’t give up until you find a medical team in whom you have confidence and with whom you feel comfortable.
II. Stay Informed
While you do not need to be as knowledgeable as your oncologist is, you do need to be an informed patient or caregiver. The more informed you are about your disease and its treatment, the better you will be at making educated choices about your care.
III. Fight with All Thy Might
Some people are opposed to the battle-based metaphors often associated with the cancer experience. However, I tend to view cancer as a David and Goliath battle royale. I believe you should fight cancer with everything you have. As for caregivers, your role is to help your loved one fight by encouraging them and by not being a source of irritation or negativity.
IV. Embrace Optimism
Research shows that, in all life’s endeavors, the more optimistic we are, the better we feel and the better we do. Going a step further, even if having a positive outlook doesn’t alter the outcome, it does make the journey a little easier to bear.
V. Try to be Patient and Kind with
your Support Team
You will find that your moods can fluctuate a great deal during cancer treatment. Pain, fatigue, fear, and difficult emotions can all affect your current mood. And while everyone on your support team means well, they can sometimes say or do the wrong thing when you are in no mood to abide it. However, it’s important to try to find the right words to express your feelings, rather than snapping at those who are there to help you. If you find yourself having a less-than-kind moment, take some time to rest or do an activity you enjoy, maybe watching a movie, to reset your mood.
VI. Avoid Toxic People
Though you should try to be patient with people who make occasional gaffes, you may need to distance or detach yourself from those who are chronically upsetting to you despite your kind and gentle feedback. You will encounter many people who, though they may truly care about you, manage to put both feet in their mouth every time they open it. You may need to limit time spent with these toxic people while you are undergoing cancer treatment.
VII. Find Tools That Help You Heal
To counter cancer, strong treatments are needed. These treatments can leave you physically, mentally, and emotionally depleted. Find tools to help you heal and move forward. For example, research shows that meditation, mindfulness, massage, yoga, and exercise can help you rebuild your strength while also recharging your emotional batteries. Keep in mind that caregivers also have their own mind-body-soul healing to do, as the trauma of cancer takes its toll on everyone.
VIII. Find Helpful and Engaging
Cancer can become one long hyper-focused, mindboggling, draining obsession. Find something that enables your mind to take a break from the intensity of cancer. Almost anything is worth pursuing if it provides a healthy distraction.
IX. Seek Support among Fellow Survivors
The community of cancer survivors can be a very special source of support. Cancer survivors share an incredible bond like none other. Reach out to fellow survivors to form a network of support through the journey.
X. Be Receptive to Miracles
It took quite a while for my scientific mind to embrace the idea of miracles. However, what I have come to call “unrealistic optimism” is oftentimes worth embracing. There are many stories of “against all odds” survivorship. I sincerely hope you can open yourself up to this type of optimism as you journey through Cancerville.
♦ ♦ ♦ ♦ ♦
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, visit cancerville.com.
Your Relationship When Treatment Ends
Facing the Transition Together
by Karen Kayser, PhD, MSW
When cancer hits home, it can often bring couples closer together. But what happens when treatment ends? Do you still need support? What about your partner? What kind of new challenges will the two of you face?
Making the Transition
After treatment, most cancer survivors and their partners experience a transition phase. Cancer dominated your relationship for months – maybe years – and now you must adjust to a life that no longer revolves around cancer.
Although this is something to look forward to, the post-treatment phase presents its own challenges. You may notice your support system dwindling as friends and family assume that your life is back to normal and you no longer need their help. Some couples may even find themselves drifting apart now that the enemy that compelled them to join forces is no longer an immediate threat. As you and your partner move from active treatment to survivorship, take this opportunity to reflect on your life during treatment and decide how you want to go forward together.
Getting Back to Work
During treatment, you may have taken time off work or quit your job altogether. Likewise, you may have relinquished some of your household responsibilities to your partner and put your usual social activities on hold.
As you consider getting back to your pre-cancer routine, sit down with your partner and make a list of the activities or tasks you would like to resume now that treatment has ended. Keep in mind that treatment-related side effects, such as pain, fatigue, and restricted mobility, can affect your functioning, and you may need to reduce your workload, especially if you’re returning to a physically demanding job.
If you’re searching for a new job, discuss your concerns with your partner. For example, you may be dealing with low self-esteem or worrying about disclosing your diagnosis to a new employer. Your partner is there to support and encourage you. Take some time to figure out your new personal and career goals, and let your partner know what he or she can do to help you meet them. When you’re ready, ease back into work and other activities at a pace that matches your energy level.
Managing Difficult Emotions
The emotional trauma of cancer can persist long after treatment ends. Regardless of who had cancer and who served as caregiver, you both will need continued emotional support.
It is common for cancer survivors and their partners to experience fear of recurrence and other unpleasant thoughts or difficult emotions. Psychological research suggests that mindfulness- or acceptance-based coping strategies can help couples effectively manage these intrusive thoughts and difficult emotions.
These approaches encourage you to accept the fact that unpleasant thoughts are going to come into your consciousness from time to time. However, you can practice letting them go by reminding yourself that you’re in control. When negative thoughts occur, release them by repeating to yourself, “These are simply fearful thoughts. They are not reality. I can let them come and go,” and then move on.
Reigniting the Spark
Sexual dysfunction is another cancer-related side effect that can stick around beyond treatment. For women, this may include loss of desire, increased vaginal dryness, and pain during intercourse. Men may also experience loss of desire, as well as difficulty achieving and maintaining an erection. Despite these issues, you and your partner can still be intimate. Communicate your sexual needs with one another and discover new ways to be physically and emotionally close.
Walking the Journey Together
Your life after cancer treatment may never be the same as it was before cancer. But you and your partner now have the opportunity to define for yourselves a new normal. For instance, if you learned new ways to reduce stress during treatment (perhaps by practicing meditation or by limiting and prioritizing activities), you may want to incorporate these strategies into your post-cancer life. By embracing the positive effects of your cancer experience and supporting each other’s goals for the future, you and your partner can enjoy a stronger relationship and a more fulfilling life together.
♦ ♦ ♦ ♦ ♦
Dr. Karen Kayser is a professor and Renato LaRocca Endowed Chair in Oncology Social Work at the University of Louisville Kent School of Social Work in Louisville, KY. Dr. Kayser has extensive clinical experience in working with couples coping with cancer-related stress, and she has published several books on couples, coping, and cancer, including Helping Couples Cope with Women’s Cancers, coauthored by Jennifer Scott.
Learn more about how cancer can affect your relationships at copingmag.com/relationships.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, July/August 2015.
Quitting Smoking after Cancer
by Suhana de Leon-Sanchez, RN, NP-BC, CTTS, and Jamie Ostroff, PhD
Although most people know that smoking is the most preventable cause of illness in the United States, there is considerably less awareness about the risks of continued smoking and the benefits of quitting for those diagnosed with cancer. Many smokers assume that quitting smoking after a cancer diagnosis won’t really make a difference. “Why bother? I already have cancer,” they say. “After all, the damage is done, right?”
Persistent smoking can significantly affect cancer outcomes. According to the U.S. Surgeon General’s most recent report on smoking, The Health Consequences of Smoking – 50 Years of Progress, individuals undergoing active cancer treatment, as well as survivors, who continue to smoke are more likely to have worse health outcomes.
Continuing to smoke after a cancer diagnosis not only increases your risk of cancer recurrence, but it can also cause treatment complications, decrease your quality of life, reduce the effectiveness of your cancer treatments, and increase your risk of developing a second cancer. Furthermore, smoking has been shown to cause (and worsen) other chronic health conditions, including diabetes, heart disease, stroke, respiratory problems (such as COPD and asthma), erectile dysfunction, rheumatoid arthritis, inflammation, blindness, and impaired immune function.
Quitting smoking can reduce your risk of cancer coming back, as well as your risk of developing new cancers. And perhaps more important, quitting smoking can increase your life expectancy – even after a cancer diagnosis.
On the flipside, quitting smoking can actually improve your health. Evidence shows that quitting smoking helps radiation therapy and chemotherapy treatments work better, improves wound healing, and reduces your risk of infection following surgery. In addition, cancer survivors who are able to quit smoking during cancer treatment often report significantly reduced treatment side effects.
What’s more, quitting smoking can reduce your risk of cancer coming back, as well as your risk of developing new cancers. It can also have a significant positive impact on your quality of life. You will likely feel better emotionally, have less stress, and see improvements in your self-esteem, appetite, sleep quality, and energy levels after quitting smoking. And perhaps more important, quitting smoking can increase your life expectancy – even after a cancer diagnosis.
OK, you’ve convinced me to quit, but I don’t know how.
You’re not alone. Despite growing awareness of the risks of smoking, as many as two-thirds of people who are current smokers at diagnosis either continue to smoke or relapse following a prior quit attempt. Quitting smoking is hard, and staying smoke-free is even harder. Couple that with the distress of cancer, not to mention the guilt you may be feeling over the prospect that your smoking may have contributed to your diagnosis, and it’s easy to see why cancer survivors can have a hard time giving up cigarettes.
Dr. Jamie Ostroff
Though the statistics may seem unpromising, there is some good news. Safe and effective ways of quitting smoking do exist. And becoming smoke-free is a reachable goal for cancer survivors – before, during, and after treatment. However, to be most successful, your tobacco cessation program must address both the behavioral and the physiological aspects of tobacco dependence.
Behavioral counseling can help you learn practical ways to cope with the urge to smoke. It can also help you strengthen your coping skills for handling the daily life stressors that may trigger your urges. For those who want to stop smoking but aren’t yet ready to quit completely, a certified tobacco treatment specialist can provide tips and strategies to help you reduce smoking in preparation for eventual quitting, and help you get motivated to do so.
The physiological component of tobacco dependence, or nicotine addiction, is best treated with FDA-approved stop-smoking medications. (See sidebar for a list of available options.) Not only do these medications help to reduce cigarette cravings, but they also help to decrease or eliminate the physical withdrawal symptoms that come with tobacco cessation. And for those who are not quite ready to set a quit date, these medications can help to reduce the total number of cigarettes smoked daily in preparation for a future quit attempt.
There are two types of FDA-approved stop-smoking medications available: nicotine replacement therapies and non-nicotine pills. Both help to reduce nicotine cravings and withdrawal symptoms, making it easier for smokers to break their nicotine addiction. These medications can be used alone or in certain cases in combination. At present, there is limited evidence to support the use of alternative treatments (such as hypnosis, acupuncture, laser treatment, electronic cigarettes, and other electronic vapor inhalation devices) to quit smoking.
Quitting smoking is difficult for anyone, and maybe even more so for cancer survivors. Not only do you have to contend with breaking the physical addiction to nicotine, but many cancer survivors also encounter stigma and criticism from family, friends, and even healthcare providers, who can be judgmental and unsympathetic about the strength of nicotine addiction, even in the face of cancer.
But there is hope. You can quit smoking – for good. By working with an experienced tobacco treatment specialist who combines FDA-approved stop-smoking medications with a behavioral change program, you can quit successfully and stay tobacco-free.
FDA-Approved Stop-Smoking Medications
How to get it: Over the counter
How it works: The nicotine patch is a nicotine replacement medication that is placed on the skin and delivers a small and steady dose of nicotine over a 24-hour period.
How to get it: Over the counter
How it works: Nicotine replacement gum is chewed until a tingling feeling is produced and then is parked between the cheek and gums to allow the nicotine to be absorbed.
How to get it: Over the counter
How it works: Nicotine replacement lozenges are like hard candies that dissolve in the mouth and are moved from side to side to allow the nicotine to be absorbed.
How to get it: By prescription only
How it works: A nicotine inhaler is a mouthpiece, resembling a cigarette, that holds nicotine-containing cartridges. As you puff on it, a dose of nicotine is absorbed in the mouth and upper airway.
Nicotine Nasal Spray
How to get it: By prescription only
How it works: Nicotine nasal spray is sprayed in the nostril to deliver a dose of nicotine, which is absorbed in the nasal passageway.
How to get it: By prescription only
How it works: This non-nicotine pill, which is taken by mouth, helps to reduce nicotine cravings and withdrawal symptoms.
How to get it: By prescription only
How it works: This non-nicotine pill, which is taken by mouth, helps reduce nicotine cravings and withdrawal symptoms. It also makes smoking less enjoyable by blocking the effects of nicotine in people who continue to smoke.
♦ ♦ ♦ ♦ ♦
Suhana de Leon-Sanchez is a board-certified psychiatric nurse practitioner and tobacco treatment specialist at Memorial Sloan Kettering Cancer Center in New York, NY. Dr. Jamie Ostroff, a clinical health psychologist, is the director of the Tobacco Treatment Program and chief of the Behavioral Sciences Service in the Department of Psychiatry & Behavioral Science at MSKCC.
Chemotherapy-Induced Peripheral Neuropathy
Answering Your Questions about this Common Nerve Condition Caused by Chemotherapy Treatment
by Robert Knoerl, BSN, RN, and Grace Kanzawa, BSN, RN, with Ellen M. Lavoie Smith, PhD, APN-BC, AOCN
If chemotherapy is part of your cancer treatment regimen, you may develop a condition known as chemotherapy-induced peripheral neuropathy, or CIPN for short. Up to 68 percent of cancer survivors may experience this common chemotherapy side effect.
What is chemotherapy-induced
As chemotherapy drugs spread throughout your body, they can sometimes damage peripheral nerves – or the nerves farthest from your brain. This peripheral nerve damage can result in chemotherapy-induced peripheral neuropathy.
Your risk of CIPN is greater with certain chemotherapy drugs, including oxaliplatin, cisplatin, paclitaxel, bor- tezobmib, thalidomides, and docetaxel. It may develop days or even months following chemotherapy treatment.
What are the symptoms?
CIPN primarily affects your hands and feet. Symptoms may include pain, burning, loss of feeling, hot or cold sensitivity, and a pins-and-needles sensation in your hands or feet. These symptoms can sometimes have a negative effect on cancer survivors’ quality of life and physical function. Tell your nurse or doctor about any CIPN symptoms you are experiencing right away so that you can take steps to manage them. If CIPN symptoms become severe, your chemotherapy dosage may need to be decreased, or chemotherapy treatment stopped altogether.
Up to 68 percent of cancer survivors may experience this common chemotherapy side effect.
Can CIPN be prevented or treated?
Though researchers have yet to discover a way to prevent CIPN, the good news is that your CIPN symptoms can be treated. One medication – duloxetine – has been approved for treating CIPN, though its use is limited. Duloxetine has only been shown to be useful to treat painful CIPN caused by paclitaxel and oxaliplatin. It is unknown whether this medication works for non-painful CIPN symptoms, or for CIPN caused by other neurotoxic drugs.
If duloxetine is not an option for you, your doctor may prescribe another drug that is effective in treating pain caused by other types of nerve damage, such as diabetic neuropathy. For example, antidepressants (such as nortiptyline and desipramine) and anticonvulsants (such as gabapentin or pregabalin) have proven effective in treating nerve damage.
Researchers have also found early evidence suggesting that a number of complementary therapies may be effective in treating CIPN. These treatments include electrical nerve stimulation, acupuncture, and mind-body therapies, such as relaxation techniques, guided imagery, biofeedback, and yoga. Clinical trials are currently underway to evaluate their effectiveness in managing CIPN.
How can I protect my hands and feet if I have CIPN?
If your CIPN symptoms include loss of sensation in your hands or feet, you may be more susceptible to injury. This loss of sensation can increase your risk of falling or tripping over uneven surfaces, burning yourself, or cutting yourself.
To avoid injury, follow these important safety tips:
♦ Make sure your house is well lit so that you don’t trip over an object you can’t feel or see. You may even want to install nightlights in key locations throughout your home so that you can better see your surroundings if you get up during the night.
♦ Always keep walkways clear.
♦ Use supportive handrails along stairwells.
♦ Make sure the rugs in your home are nonslip, and tape down carpet edges.
♦ Wear gloves when cleaning with very hot water or working with sharp objects.
♦ Wear warm gloves and footwear whenever you may be exposed to cold temperatures.
♦ Wear shoes with hard soles that comfortably cover your feet.
♦ Check your feet regularly for injuries, as foot injuries can lead to infections or other complications if they are not promptly treated.
Most importantly, talk with your healthcare team about your CIPN symptoms and any trouble they may be causing you. Not all CIPN treatments work for everyone, but your doctor will help you to find the one that is best for you. You doctor may also offer additional recommendations for managing your CIPN or refer you to a specialist who can help you better control your CIPN symptoms.
♦ ♦ ♦ ♦ ♦
Robert Knoerl and Grace Kanzawa are PhD students at the University of Michigan School of Nursing. They are both interested in studying the use of nonpharmacological interventions to improve quality of life in cancer survivors with CIPN. Dr. Ellen Lavoie Smith is the director of the University of Michigan School of Nursing PhD program.
To learn more about managing chemotherapy-induced peripheral neuropathy and other common side effects of cancer treatment, visit copingmag.com/side_effects.
How Martin Sheen Helped Me Survive Cancer
by Susan Groh
Life has a funny way of giving you the things you need. When I was diagnosed with acute myeloid leukemia, I felt like a ship cut free of its moorings during a storm. I cast about trying to come to grips with my diagnosis and find safe harbor, until a conversation with actor Martin Sheen provided the anchor I needed.
I’d never really felt sick, just tired and a little dizzy. A blood test for anemia showed my white cell count was critically low, and my doctor sent me immediately to the emergency room at Miriam Hospital in Providence, RI. More tests were run, and an overnight stay in the hospital morphed into a month of intensive treatment, chemotherapy, and, finally, a recommendation that I have a stem cell transplant.
It was a lot to take in. I was stunned by how little I knew about my own body and how unqualified I was to make decisions about my treatment. Killing off my own immune system in hopes that donor cells could save me seemed like a huge risk, but I was told my chances of surviving with chemotherapy alone were only 16 percent. My husband and children stayed close by my side offering reassurance and some sense of normalcy, but the fear crept in when I was alone. That’s when I spoke with Martin Sheen.
I put in my request to talk with Martin Sheen, anticipating it could take weeks to get a response. Instead, he called me right away, at home, when I was completely unprepared.
I’d just been released from the hospital and would have a few weeks to regain my strength at home before receiving more chemotherapy. I decided to keep my life as normal as possible and plowed ahead with scheduled writing projects. Each spring, I interview the celebrity who will be the guest speaker at New England Institute of Technology’s commencement. I put in my request to talk with Martin Sheen, anticipating it could take weeks to get a response. Instead, he called me right away, at home, when I was completely unprepared. Not wanting to miss the chance to talk with him, I grabbed pen and paper and proceeded with the interview.
Martin was genuine, down to earth, and easy to talk to. We spoke about acting, as well as his commitment to social activism, and we talked about taking risks and being open to change. He had no idea I was struggling with trying to decide the best course of treatment for my leukemia when he said to me, “You have to take that next step and to have the courage to step when you don’t know you’re going to land on solid ground. It’s the risk that makes us strong.”
I dropped my professional demeanor as I told him how much his words touched me. And that I felt as if I was standing on a cliff and had to step forward, but I had no idea if I’d fall off the edge or find my footing. He responded with compassion and encouragement, and talked about having faith in tomorrow and faith in yourself.
His words stayed with me as I underwent two more rounds of chemotherapy and decided to go ahead with the stem cell transplant. I definitely felt like I was teetering on the edge of a very high cliff, but I was going to step forward, confident I would land on solid ground.
I finished my writing for New England Tech’s commencement from my hospital bed as chemotherapy dripped into my veins. My doctor gave me permission to attend. My oldest son was graduating, and I desperately wanted to be there as he accepted his diploma.
I was released from the hospital on a Saturday. The next morning, with a wig carefully placed over my bald head, I stepped through the door of the media room at the Rhode Island Convention Center and met Martin.
He greeted me with a hug and gave me a rosary that he’d had blessed and brought back from the Holy Land. He told me it didn’t matter whether I was Catholic, just to hold onto it. I did.
It was with me when I was admitted to Dana Farber Cancer Institute in Boston, and it was in my hands as my family gathered around my hospital bed while a priest prayed over the stem cells that a donor had provided to save my life. I held it tight as the stem cells were infused into my body, and I kept it on my bedside table as I recovered from the transplant.
I keep it with me still. I’m more than three years out from treatment, and I feel well. I continue to step forward toward my future, knowing that you have to “have the courage to step when you don’t know you’re going to land on solid ground.” Truly, it’s the only way to live.
♦ ♦ ♦ ♦ ♦
Susan Groh is an acute myeloid leukemia survivor living in Warwick, RI.
What Do We Tell the Kids?
by Katelyn Uyehara, MSW, LICSW
When a parent is diagnosed with cancer, one of their first major concerns is what to tell the kids. Unfortunately, the impact of a cancer diagnosis is one of many things in life you can’t shelter your children from. What you can do, however, is give them tools to cope with and adjust to this new challenge.
As the parent, you are the expert when it comes to your children and their needs. However, you can use these basic principles as a general guide for helping your children cope with your cancer diagnosis.
Give yourself time.
Before talking to your children, allow yourself time to process the situation. If you have a partner or you’re in a co-parenting arrangement, make sure you’re both on the same page about how to address the topic of cancer. It’s helpful for kids to see that the whole family is in this together.
Use age-appropriate language.
Children can sense when a change has occurred within their environment and may experience anxiety if the change goes unacknowledged by the adults in their lives. Accounting for age, update your children on your health status using words they can understand.
Use the word cancer and be direct.
Because children have incredible imaginations, they may develop a skewed understanding of what a cancer diagnosis means. To avoid this, be direct. Make sure your kids know that nothing they said or did caused the cancer and that they can’t catch it. Talk with them to find out what they actually know about cancer – perhaps they’ve heard about it from another child or on a television show. Then distinguish your situation from those they’ve encountered so your children are less likely to project those experiences onto yours.
Make sure your kids know that nothing they said or did caused the cancer and that they can’t catch it.
Tell the truth.
It’s important to establish a trusting relationship with your children. They need to feel safe coming to you with their questions and concerns. And they need to know that you are telling them the truth.
Provide regular updates.
Your kids may shy away from asking questions about your cancer. They might not know how to ask or when would be a good time to ask. Dedicate a specific space and time for your family to discuss what’s on everyone’s minds, and provide them with regular updates on your health.
Defer the hard questions.
You don’t have to answer each of your children’s questions right away. It’s OK to say, “That’s a good question. I don’t know the answer, but I will get one for you.” If a child brings up the topic of death, be careful not to make any promises. You can let them know that while some people do die from cancer, you trust your medical team to take care of you. Reassure them, “If anything changes, I will let you know.”
Show your emotions.
Children are intuitive. If what you’re saying doesn’t correlate with your facial expression or body language (for instance, saying you’re fine when you have tears in your eyes), your children will notice. Teach them to express their feelings, and lead by example through expressing your own. Acknowledge that cancer can be tough and that it’s OK to cry. It’s also OK to jump with joy when you receive good news.
Maintain structure, rules, and
Children need structure and routine, and they need to be reassured that they will always be cared for. Designate a trusted friend or family member to help when needed. Make a plan for who will pick the kids up from school, watch after them, and cook dinner on days when you’re not able to do those things. Your children may start testing the household limits if someone new is in charge. Assert that neither the house rules nor the punishments for breaking them have changed.
Get additional help.
If your children need additional support, you might consider seeking out a professional, such as a social worker, teacher, or guidance counselor, who has experience working with children who have a parent with a chronic illness.
Above all, remember that children are resilient. It’s not possible to protect them from hardship, but you can give them support and teach them coping strategies to help them through rough patches. Be confident that with support, your children can cope well and grow from this experience.
♦ ♦ ♦ ♦ ♦
Katelyn Uyehara is a clinical oncology social worker in the gastrointestinal and gynecologic oncology clinics at the Dana Farber Brigham and Women’s Cancer Center in Boston, MA.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, May/June 2015.
Surviving the Emotional Roller Coaster of Cancer
by John Leifer, with Lori Lindstrom Leifer, MD
For many people with cancer, the emotional roller coaster that began at the time of diagnosis may continue well into treatment. It’s hard to imagine not feeling distressed when facing a life-altering disease.
However, emotional distress often goes unaddressed during the early stages of diagnosis and treatment – a time when, ironically, intervention may be most beneficial. Distress manifests in many ways. You may feel sad, afraid, hopeless, anxious, discouraged, or even exhausted. It is the intensity, frequency, and duration of these feelings that determine whether they are a normal emotional reaction to cancer or something more significant.
When Distress Crosses the Line and Becomes More Serious
It’s important to bear in mind that there is no sharp line in the sand separating “normal” distress from more debilitating levels of anxiety, depression, and posttraumatic stress. However, according to the American Cancer Society, there are warning signs that may indicate the need for some level of intervention, including
♦ Feeling overwhelmed to the point of panic
♦ Being overcome by a sense of dread
♦ Feeling so sad that you think you cannot go through treatment
♦ Being unusually irritable and angry
♦ Feeling unable to cope with pain, tiredness, and nausea
♦ Poor concentration, “fuzzy thinking,” and sudden memory problems
♦ Having a very hard time making decisions – even about little things
♦ Feeling hopeless – wondering if there is any point in going on
♦ Thoughts about cancer and/or death all the time
♦ Trouble getting to sleep or early waking (getting less than four hours of sleep a night)
♦ Trouble eating (a decrease in appetite, or no appetite) for a few weeks
♦ Family conflicts and issues that seem impossible to resolve
♦ Questioning your faith and religious beliefs that once gave you comfort
♦ Feeling worthless and useless
You Are Not Alone
If your anxiety or depression has reached clinically significant levels, you are not alone. We know from extensive research that a meaningful percentage of cancer survivors will be affected – though many survivors with distress go undiagnosed. Two major studies suggest that approximately 20 to 45 percent of cancer survivors experience clinically significant anxiety, depression, or both.
Approximately 20 to 45 percent of cancer survivors experience clinically significant anxiety, depression, or both.
Certain People Are More Likely to Experience Distress
Though distress may be a universal human reaction to a cancer diagnosis, we know that some people are more affected than others are:
♦ Women experience greater rates of anxiety and depression than men do. Based on their type of cancer, these rates may be two to three times as great as those that are found in men.
♦ Age can play a significant role, with younger survivors experiencing higher levels of distress.
♦ A prior history of psychological distress is a major risk factor for re-kindling anxiety or depression in people with cancer.
♦ Education, social status, levels of physical activity, and other factors also determine one’s vulnerability to emotional distress.
Who Is Monitoring My Distress
Despite the prevalence of distress, don’t count on your physician to address your mental health or well-being. The reality is that physicians do an inadequate job of identifying and addressing the psychological needs of their cancer patients. As one physician told me, “I wait for the patient to bring it up. I don’t initiate conversations about their feelings.”
Because doctors are often focused on physical symptoms and treatment, studies have found that emotional and psychological issues may be overlooked or discounted. Survivors, for their part, may be too embarrassed or reluctant to report their concerns. And while large cancer centers have the resources and staff to screen for distress and provide help, community hospitals and oncology practices often don’t have the time or funding.
If you are feeling unduly anxious or depressed, it is important that you talk to your physician about it. Ask him or her if there is a social worker in the office or other mental health professional with whom you may speak. If not, you may want to ask for a referral. In many communities, there are cancer support organizations that address this gap in care. If you are suffering, it is important that you seek out empathic providers who can help you manage the emotional roller coaster of cancer. There is no reason to suffer undue anguish if it can be remedied, and there are very real physical consequences to impaired mental health or well-being.
Coping with Cancer-Related
Although cancer may be the most daunting challenge you have faced to date, there undoubtedly have been other difficult periods during your lifetime. You probably discovered a variety of methods for coping with these stressful times that could prove quite effective in improving your well-being during cancer treatment and survivorship.
Some of these strategies involve other people, including family, close friends, and clergy. Other strategies are solitary endeavors. Whatever brings you peace, comfort, meaning, or joy should be considered. Here are some of the myriad ways that people with cancer can reduce their stress levels and improve well-being:
♦ Physical activity Exercise has been shown to have a profound effect on stress and well-being. Consider new forms of exercise, such as yoga, that may be easier to manage while undergoing treatment.
♦ Quiet and contemplation This could take the form of meditation, prayer, guided imagery, or similar practices.
♦ Journaling The simple act of writing about your experiences and feelings can be profoundly cathartic.
♦ Practicing gratitude Gratitude exercises that focus on the many “gifts” that you still enjoy and that enrich your life have been demonstrated to have a powerful effect on well-being.
♦ Maintaining normalcy Seek to maintain those aspects of your life that make it feel “normal,” and hold onto as much of your daily routine as possible.
♦ Support groups Experiment with support groups to determine if they are helpful for you.
Many communities are fortunate enough to have dedicated cancer resource centers that provide well-being services. Ask your physician or nurse about the types of services available in your community. You can also search online. It is best if you can find services offered by a nonprofit community organization whose mission is to improve patients’ well-being.
When Some Additional Help Is Needed
When your existing methods of coping fail to bring adequate relief from distress, take comfort in knowing that numerous additional interventions are available, including supportive therapies (i.e., talk therapies), medical therapies, physical activity, and positive psychology interventions.
♦ Supportive therapies People who seek supportive or talk therapy will likely receive care from a psychologist, psychiatric social worker, counselor, or similarly trained professional. These mental health professionals employ a variety of techniques, including cognitive behavioral therapy, to help people reconceptualize their distress.
♦ Medical therapies If medical therapies are indicated, your physician will either prescribe drugs designed to mediate your anxiety and depression or refer you to a psychiatrist or psy- chiatric nurse practitioner. It is important for you to understand the benefits, limitations, risks, and side effects of any medication prescribed to you. You should also ensure that new medications do not interact with any current medications and that there are no dietary restrictions associated with taking the new medications.
♦ Physical activity As previously indicated, physical activity is among the most powerful interventions known for improving well-being. A doctor-approved exercise plan can make a tremendous difference in your overall mental health and ability to endure the rigors of treatment.
♦ Positive psychology interventions The final group of interventions is derived from the emerging field of positive psychology. Whereas psychology traditionally has focused on what is wrong with patients, positive psychology seeks to build on what is right. Its focus is on enhancing well-being and mitigating the damaging effects of distress. Though it has been occasionally derided for being focused on happiness, positive psychology is a scientifically rigorous discipline that has yielded important findings about how to enhance meaning, fulfillment, joy, and vigor in our lives.
Among the most researched positive psychology interventions is mindfulness, a form of meditation that is quickly learned and easily practiced. Though it may have little to no impact on the physical course of a person’s disease, it can improve quality of life, acceptance of one’s condition, and the ability to smooth out the bumps in the long journey through cancer. Other forms of positive psychology interventions commonly used with cancer patients include resilience training, gratitude exercises, and music therapy.
Your Take-Away Message
People’s emotional reactions to cancer are as varied as their personalities. Even so, the preponderance of anxiety, depression, and other conditions that negatively affect cancer survivors’ well-being are well documented. If you are feeling a moderate to high level of distress, it is important to discuss this issue with your doctor. Depending on the significance of your symptoms, you may benefit from a variety of treatments, ranging from physical activity to meditation to medication. You can learn to manage your distress and may benefit significantly in the process.
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John Leifer has spent more than 30 years seeking to catalyze positive change within the healthcare industry as a senior healthcare executive, consultant, academician, writer, and, most recently, as a senior vice president for a hospital health system. An outspoken advocate for patients’ rights, John has published widely on the need for patients to receive appropriate, safe, and effective care. Dr. Lori Leifer is both a cancer doctor and a cancer survivor. As a radiation oncologist, she has provided care to patients for the past 25 years. In addition to her clinical practice, Lori holds a teaching position as assistant clinical professor at the University of Kansas School of Medicine, in Kansas City, KS.
For more information on John, Lori, and the book from which this article is adapted, After You Hear It’s Cancer: A Guide to Navigating the Difficult Journey Ahead, visit AfterYouHearItsCancer.com.
Reprinted with permission from After You Hear It’s Cancer: A Guide to Navigating the Difficult Journey Ahead, Copyright © John Leifer. Used by arrangement with Rowman & Littlefield. All rights reserved. No part of this excerpt may be reproduced or printed without permission in writing from the publisher.
Manage Your Stress with Meditation
by Alejandro Chaoul, PhD, and Kira Taniguchi, MA
These days, mindfulness is in. The hot topic even made the cover of Time magazine’s February 3, 2014, issue, and since then, more and more experts have been weighing in on the purported benefits of this practice.
What exactly is mindfulness? How does it work? More specifically, how can mindfulness benefit people with cancer and their caregivers when used as a complementary therapy?
To start, mindfulness, an aspect of meditation, is the ability to bring your awareness to the present moment with an attitude of openness and curiosity. Although various meditation methods exist, most share features of mindfulness, including focusing attention, regulating breathing, and managing thoughts and feelings.
The goal of meditation is to help bring balance to your body and, ultimately, to your life as a whole.
Anxiety and stress are common among people with cancer and their caregivers. These feelings can distract you from the present and, if left unmanaged, can speed the aging process, increasing your risk for heart disease, sleeping difficulties, digestive problems, and even depression.
While it’s not always possible to control stressful events or situations, it is possible to learn how to control your reactions to them. That’s where mindfulness comes in, to help you manage your hard-wired fight-or-flight response to stressful stimuli.
Research has shown that meditation can lower cortisol levels, decrease blood pressure, bring balance to the immune system, and even modify gene expression, leading to decreased inflammation. For people with cancer, in particular, meditation may help decrease anxiety and negative emotions, improve sleep, improve memory and cognitive function, increase spiritual awareness and sense of well-being, regulate blood pressure, and relax the body. The goal of all mind-body practices, including meditation, is to help bring balance to your body and, ultimately, to your life as a whole.
Getting started is easy. When you’re feeling stressed out, try one of the following mindful meditation techniques.
♦ Stop what you’re doing, and take a break. Focus on your breathing for a few minutes.
♦ Stretch your arms upward. As you lengthen your back, breathe deeply through your nose into your belly and back out through your nose. Lower your arms, place them on your lap, and take a few deep, long, calm breaths.
♦ As you breathe normally, imagine your breath as a light that nurtures you. When you breathe in, inhale nurturing qualities – feelings of joy, love, calm, connection to others. Each time you breathe out, exhale tensions – pain, fear, anxiety, stress. Repeat until you start to feel calm.
♦ When you’re in the car and pull up to a stoplight, take the opportunity to connect to yourself; ignore your phone, turn off the radio, and pause to breathe in peace and release your anxious thoughts.
♦ Whenever you wash your hands, use this time to wash your mind as well. As you focus on lathering and rinsing the soap off your hands, take slow breaths and imagine that you are also cleansing your mind.
Think of these techniques as “meditation pills.” You can carry them with you wherever you go and have a “dose” anytime you need help finding a sense of calm and focusing on the present.
Some hospitals offer meditation classes for survivors and caregivers. If you’re interested in learning more ways to find balance, ask a member of your healthcare team if your treatment facility offers meditation classes and, if so, how you can take advantage of this resource.
♦ ♦ ♦ ♦ ♦
Dr. Alejandro Chaoul is an assistant professor and director of education for the Integrative Medicine Program at the University of Texas MD Anderson Cancer Center in Houston, TX, where he conducts research using mind-body techniques and holds group and individual meditation classes for cancer survivors and their caregivers. Kira Taniguchi is coordinator of department publications at MD Anderson Cancer Center.
Visit mdanderson.org/integrativemedcenter for free, downloadable video and audio resources related to meditation and other integrative therapies.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, May/June 2015.
Fertility and Cancer
Know Your Options for Becoming a Mother after Treatment
by Lisa Kolp, MD
When you hear the news that you have cancer, you may feel as if your life is spinning out of your control. You wonder whether you will survive. And what about all the side effects of cancer treatment? Will you be able to manage them? Then your doctor drops another bomb, sending your sense of control hurtling even further from your reach: the treatments intended to save your life may leave you infertile.
Fortunately, the majority of young women diagnosed with cancer are surviving the disease and living longer, healthier lives. Acknowledging this fact, the American Society of Clinical Oncology has declared achieving quality survivorship a priority in cancer treatment, and for many young survivors, that includes the ability to start or grow a family.
How does cancer affect
Women are born with all the eggs they will ever have. Each egg is located in a microscopic cyst in the ovary called a primordial follicle, and each follicle is part of the ovarian reserve from which eggs are released over the course of a woman’s lifetime. When a woman’s ovaries run out of eggs, she enters menopause. Menopause occurs in women naturally, usually around age 50; however, certain cancer treatments can accelerate the process of egg loss. Both chemotherapy and radiation to the pelvis can destroy the eggs in the ovarian reserve. Radiation and surgery can also affect fertility by damaging reproductive structures, leaving a woman unable to carry a pregnancy.
If all of a woman’s eggs are destroyed, she will experience ovarian failure; her menstrual periods will end, and she may develop menopausal symptoms, like hot flashes and night sweats. If some of the eggs survive, the menopausal side effects will be temporary, and the woman’s menstrual cycle will resume. The number of eggs that will survive treatment depends on individual factors, including your age and the type and dose of treatment you receive.
Is it safe to have a baby after cancer treatment?
It’s important to avoid conceiving during treatment. It’s also best to wait for several years after treatment to give your body time to recover and to make sure your cancer is in a sustained remission before considering pregnancy. However, after a reasonable length of time, pregnancy is safe. The risks of birth defects, prematurity, or other complications of pregnancy are no higher in cancer survivors than in otherwise healthy women. A caveat: if the uterus has received significant radiation, it may not be able to sustain a pregnancy, resulting in a higher risk of miscarriage, prematurity, and stillborn births.
What can I do to preserve my fertility?
Ideally, as part of your cancer treatment planning, your oncologist will send you to a reproductive endocrinologist to discuss your fertility preservation options prior to treatment. You may have time to consider cryopreservation, a technique that involves freezing embryos (fertilized eggs) or oocytes (unfertilized eggs) for future use, with embryo freezing being the most effective method.
If you’re facing chemotherapy, your doctor may suggest a gonadotropin-releasing hormone (GnRH) agonist, such as Lupron Depot, which may offer some protection to your ovaries during treatment.
Do I still have options after treatment?
If your menstrual periods resume after treatment, you have a good chance of conceiving naturally. Although some of your eggs have been destroyed, the prognosis for pregnancy in a young woman who has a decreased ovarian reserve but otherwise normal fertility is very good.
If treatment destroyed your ovarian reserve, resulting in premature menopause, you may still be able to achieve pregnancy with in vitro fertilization (IVF) using your frozen eggs or embryos, if you were able to bank them before treatment, or with a donated egg. If your uterus was damaged by surgery or radiation, or if it was removed completely, you can enlist a gestational carrier, or surrogate, to carry a pregnancy conceived with your egg and your partner’s or a donor’s sperm. Using fertilized donor eggs is also an option. And, regardless of your reproductive status, adoption is another way to build a family.
Starting a family is a real possibility for many women after cancer treatment. Meeting with a reproductive endocrin-ologist early in the treatment planning process will allow you to take advantage of the most optimal fertility sparing techniques. Be sure to ask your doctor if you are at risk for infertility, and find out what options are available to preserve your fertility.
♦ ♦ ♦ ♦ ♦
Dr. Lisa Kolp is an assistant professor of gynecology and obstetrics at Johns Hopkins Medicine – Green Spring Station in Lutherville, MD, where she has developed a fertility preservation program for women facing cancer treatment.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, May/June 2015.
Put an End To Cancer Pain
by Julie Knight, PharmD, Charlene Whittlesey, PharmD, BCPS, and Sorin Buga, MD, FACP
Pain, as defined by the International Association for the Study of Pain, is “an unpleasant sensory and emotional experience associated with actual or potential tissue injury or described in terms of such damage.” In other words, pain is whatever you perceive it to be. We all feel pain differently; therefore, the pain experience is unique to each person.
Cancer-related pain can be caused by the cancer itself or by its treatment. Chemotherapy can cause nerve damage, leading to joint pain and pain in your hands, feet, and other areas of your body. Surgery and radiation are also pain-causing culprits. In general, pain is classified as being acute (lasting less than six weeks), subacute (lasting six weeks to three months), or chronic (lasting more than three months).
If you’re in pain, it’s important to seek treatment for it. Treatment for pain can include medication, nonpharmacologic therapies, and certain medical procedures.
Several different types of medication are used to treat cancer pain.
♦ Non-Steroidal Anti-Inflammatory Drugs (NSAIDs) These medications often are successful in treating pain associated with cancer. However, it’s important to follow instructions for the use of NSAIDs, as overuse can lead to serious complications.
♦ Acetaminophen This common over-the-counter medication often is used in conjunction with opioid medications. In fact, some prescriptions contain a combination of an opioid (like hydrocodone) and acetaminophen. Liver toxicity is possible when acetaminophen is taken in high doses, so it should be only taken as directed.
♦ Muscle Relaxants Muscle tightness and spasms are common cancer pain symptoms. Muscle relaxants can effectively relieve these symptoms, but they may cause drowsiness or dizziness.
♦ Topical Medications In some situations, medications in the form of creams, ointments, and patches can alleviate localized pain. These medications may take some time to work, so you should use them for several days before deciding whether they are helpful.
Dr. Charlene Whittlesey
♦ Antiepileptics and Antidepressants These agents are recommended as first- or second-line treatment for neuropathic pain.
♦ Corticosteroids Chronic use of corticosteroids should be avoided if possible, but these medications may be used to treat various types of pain, particularly bone pain.
♦ Opioids Marked improvement in cancer-related pain control can be achieved with opioid medications. However, with prolonged use, opioids can induce tolerance, and your doctor may need to adjust your dosage after some time. Stopping opioid medications abruptly can cause withdrawal symptoms, such as nausea, vomiting, diarrhea, and sweating, so it is important to follow your doctor’s instructions when it comes time to wean off them. Some people worry that if they use opioids to ease their cancer pain, they will become addicted. This is a myth. However, opioids have been associated with prescription abuse, so you should take these medications only as prescribed.
A variety of strategies can be used to help you manage cancer-related pain without, or in addition to, the aid of medications.
♦ Support Groups You can find networks of cancer survivors, locally or online. Support groups provide a social support system where you can receive encouragement and advice for dealing with cancer’s side effects from other survivors.
Dr. Sorin Buga
♦ Psychological Support Services Working with a mental-health professional can help you improve your ability to cope with cancer and its side effects. Psychotherapy is especially beneficial if you have a history of depression, anxiety, or another psychiatric illness.
♦ Physical and Occupational Therapy Exercise prevents physical weakness that can lead to painful joint stiffness and muscle tightness. Aquatic therapy in particular can help relieve pain caused by certain movements.
♦ Transcutaneous Nerve Stimulation (TENS) Although there is currently very little evidence to support this treatment, which uses a battery-powered device to deliver electrical currents through electrodes placed on your skin, it may be worth discussing with your doctor. Keep in mind, however, that there are risks associated with using a TENS unit, particularly if you have cancer in your bones.
A variety of medical procedures can be done to improve cancer-related pain. Interventional approaches, such as nerve blocks or implanted intrathecal pumps, can provide significant pain relief, especially if you’re not responding to pain medications or if you’re experiencing side effects from them. Surgically removing a tumor that’s causing pain or other discomfort may also be an option. In addition, radiation therapy has proven to be very helpful in relieving bone pain. In fact, an emerging field in radiation oncology is the use of radionuclides for bone metastasis.
Discuss your treatment options with your doctor, and keep the lines of communication open so you can work together to put an end to your cancer pain.
♦ ♦ ♦ ♦ ♦
Dr. Julie Knight is a clinical consultant pharmacist at Tidwell Hospice and Palliative Care in Sarasota, FL, and a clinical assistant professor of pharmacotherapy and translational research at the University of Florida College of Pharmacy in Gainesville, FL. Dr. Charlene Whittlesey is a clinical pharmacist with the Internal and Hospital Medicine Service at the H. Lee Moffitt Cancer Center in Tampa, FL. Dr. Sorin Buga is an associate clinical professor in the department of Supportive Care Medicine at City of Hope National Medical Center in Duarte, CA.
Something Old, Something New
Instead of planning my perfect wedding, I was fighting for my life.
by Holly J. Bertone
Over the course of 48 hours, eight words changed my life forever. The first four came during a phone call from my doctor. The latter came two days later when my boyfriend, Carter, proposed marriage. Those eight words, “You have breast cancer,” and “Will you marry me?” were just too much to process together.
Wedding Dreams, Harsh Realities
During the months leading up to their wedding day, most brides are making plans, trying on dresses, and picking out flowers and invitations. During the months leading up to my wedding day, I had surgery, chemo, and radiation.
Every bride wants to be beautiful on her wedding day. Every bride wants her wedding day to be perfect. But instead of getting to enjoy planning my perfect wedding, I was fighting for my life.
My fiancé and I didn’t get to be one of those annoyingly lovey-dovey engaged couples. Our lives had crumbled in an instant. Nothing would ever be the same.
Beauty Tarnished, Love Blind
Like every other newly engaged woman, I wanted to be a beautiful, sexy fiancée and bride. I wanted to experience the euphoria of new love and preparing for happily-ever-after. I wanted my betrothed to look at me like I was the most beautiful woman in the world. But I was scared Carter wouldn’t love me anymore; I was afraid he wouldn’t find me beautiful. Breast cancer lands a triple punch to a woman’s self-esteem, as it typically takes away the three things that outwardly define her femininity – her hair, her breasts, and her fertility.
I tried on my wedding
dress. The mirror
For a moment, I was the SOMETHING BLUE.
After my lumpectomy, I lost part of my right breast, and I had two big scars on my chest. I forbade my future husband from touching me. On top of that, I smelled like chemo-funk. I didn’t even want to be near myself; I couldn’t imagine how Carter could stand being near me.
My head looked like I had spread glue sporadically on top of it and then covered it with dryer lint. And my GI tract went haywire. I mean, nothing says “beautiful, sexy fiancée” like a bald woman with the walking farts. Why this man still wanted to marry me was beyond comprehension.
On one emotionally challenging day, I did what anyone would do for self-preservation – I tried to push my fiancé away. “I don’t know why you want to be with me,” I told him. “I’m bald, and I’m missing part of my breast, and it’s not fair to you. You deserve to be with a beautiful fiancée and wife. You deserve to be with a woman who is …”
Carter wouldn’t let me finish the sentence. “Don’t even say I deserve to be with a woman who is whole. You are whole, and I love you just the way you are,” he reassured. “If I came back from my deployment to Afghanistan missing an arm or a leg, would you love me any less?”
“I would probably love you even more,” I responded.
The tears eventually stopped. These conversations became defining moments in our relationship and helped us to reach breakthroughs in dealing with cancer.
Something Old, Something New
On the weekend before our wedding, I did a final prep, and I tried on my wedding dress. The mirror was cruel. For a moment, I was the something blue. I was getting married without hair, eyebrows, or eyelashes. I was getting married with two scars and with part of my breast missing. Chemo took an enormous toll on my body.
I took a deep breath and borrowed some strength. I had to let go of the something old and embrace the something new.
Beauty is not my bald head, but it is my brains, which are smart and have the ability to make others laugh. Beauty is not my scars, but my heart underneath and my ability to love. Beauty is not chemical menopause, but my commitment to raising my new stepson and taking care of my new family.
I spent the last eight months of my engagement kicking cancer to the ground. I was a survivor. And my wedding day would be perfect, because my boys would be by my side. Because they never left. I was finally ready to say, “I do.”
♦ ♦ ♦ ♦ ♦
You can find Holly Bertone blogging at CoconutHeadSurvivalGuide.com, where she writes about life after cancer. Holly is a breast cancer survivor and advocate who has published three books on cancer survival and is getting ready to celebrate her five-year survivorversary.
12 Tips for Coping with Cancer during the Holidays
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 can become exhausting and stressful. While there’s no right or wrong way to celebrate, here are 12 tips to help you have a joyful, stress-free holiday season.
1 Remember the reason for the
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.
2 Adjust expectations.
Set realistic expectations. Don’t feel like all your holiday festivities need to be “perfect.” Overextending yourself and your body can cause stress, which can make you miss valued quality time with friends and family.
3 Make priorities.
You may not have the time or energy to do some activities. 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.
4 Be open to change.
There may be some holiday traditions you just don’t have the time or energy to participate in. Don’t get stuck in the old ways of doing things. Modify your usual holiday traditions to meet your needs this year, or create new ones that make the most of your energy.
Don’t feel guilty when you have to turn down
or skip out on an activity.
5 Don’t be afraid to say no.
And don’t feel guilty when you have to turn down an invitation or skip out on an activity. 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.
6 Ask for and accept help.
You don’t have to do it all. 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.
8 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.
9 Be mindful of your eating habits.
It’s easy to overindulge when there are holiday parties and seasonal goodies everywhere you turn. Control your portions. Eat balanced meals, and avoid drinking excessive amounts of alcohol. Give your body plenty of the healthy food it needs.
10 Keep moving.
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 and give you more energy. Just make sure to talk with your doctor before starting any exercise program.
11 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.
12 Listen to your body.
You won’t always feel up for participating in holiday events. Take a break from all the festivities when you need to. It’s important to balance activity and rest throughout the holiday season.
♦ ♦ ♦ ♦ ♦
Living Well with Lung Cancer
Lung cancer can be treated in several different ways. Each person’s experience is unique, but the more information you have, the better equipped you will be to ask questions and make decisions.
The treatment for lung cancer depends on your lung cancer type, stage, and treatment goals. You will work with your lung cancer care team to decide what the goal of treatment should be: cure, control, or comfort.
Every doctor, patient, and caregiver hopes that treatment will get rid of the cancer completely. This is a more realistic goal for some people with lung cancer than for others. It depends on your lung cancer profile – the type and stage of your cancer and what treatment options you are eligible for. When a lung cancer cure is your goal, you may be willing to endure more intense side effects in return for the chance at a cure.
Sometimes, when your cancer is at a later stage or previous lung cancer treatments have been unsuccessful, your treatment goal might change to controlling your lung cancer. This might mean choosing treatments that try to shrink or stop your cancer from growing. If this is your goal, you might not want to choose harsher lung cancer treatments and the side effects they may cause.
If you have an advanced-stage lung cancer or one that hasn’t responded to treatments, you might consider lung cancer treatment that allows you to be comfortable and enjoy your life instead of treatment that will continue to address the cancer but might cause harsh side effects. You and your doctor will work together to make sure you are free of lung cancer symptoms and able to live your life.
Choosing Your Treatment
Once your doctors have determined your lung cancer profile and you have set your treatment goals, your doctors will present you with one or a combination of the following treatment options: surgery, radiation therapy, chemotherapy, targeted therapy, immunotherapy, clinical trials, and supportive (palliative) care.
Each lung cancer treatment option has risks and possible side effects. Most side effects can be managed fairly well, but you should consider all of the possibilities when you examine your lung cancer treatment options.
Knowing What to Expect
No one can predict what your individual journey will be like, but knowing what to anticipate during and after treatment can help you feel more prepared. Research as much as you can from trusted resources, and maintain an open dialogue with your healthcare team about your needs. You should also ask if your hospital or cancer center has a nurse navigator or care coordinator on site to help you make decisions and manage your lung cancer care.
Your health needs will change over time, but protecting your lungs, eating right, exercising, and managing your stress should always be priorities. Here are three things you can do to stay healthy during and after lung cancer treatment.
#1 Protect Your Lungs
Make sure your lungs aren’t being stressed any more than they need to be. If you smoke, quit smoking. Quitting smoking makes a positive difference in your risk for lung cancer and ability to heal after lung cancer treatment. Avoid secondhand smoke and going outside when the air quality is poor. Ask people not to smoke near you at work and at home. Avoid social activities that will expose you to secondhand smoke.
#2 Take Care of Your Body
Your body needs all the support it can get so you can heal properly and fight lung cancer. Being mindful of the following will help you care for your body during and after lung cancer treatment:
♦ Stress can weaken your immune system and take other tolls on your body. Using lung cancer support resources and some complementary medicine treatments can help reduce stress. Talk with your lung cancer care team about ways to cope with the stress of lung cancer.
♦ Conserving energy can help you fight fatigue. Make sure you get the appropriate amount of rest, not too much or too little. Planning ahead, spacing out tasks, and asking for help will also help you feel less tired.
♦ Good nutrition can make a big difference in how you feel.
♦ Physical activity will help you feel better physically and mentally. Even small amounts of activity can help.
#3 Use Your Support System
Friends, family, and healthcare professionals are invaluable resources during this time. Most people want to help; they just don’t know how. Don’t be afraid to ask for support from those around you. You might also want to think about seeing a social worker, psychologist, or counselor. These people can help you deal with stress, depression, and anxiety that may arise as a result of facing lung cancer.
♦ ♦ ♦ ♦ ♦
Source: American Lung Association, lung.org
What Can Cancer Rehabilitation Do for Me?
by Leslie J. Waltke, PT, DPT
As if hearing the words “you have cancer” isn’t difficult enough, it can be even more distressing to discover that the very treatments used to save your life may cause you pain, fatigue and weakness, sapping you of the energy needed to enjoy the very life you are fighting to save. But there is promising news – cancer rehabilitation can help.
Years ago, people were told to take it easy following surgery or injury. However, with time and research, healthcare providers have learned that a strict regimen of rest is a poor treatment tool. Today, those in recovery are sent to physical therapy and encouraged to exercise. And research is telling us the same thing about rehabilitation during and after cancer treatment.
Cancer rehabilitation and exercise programs have been shown to increase cancer survivors’ quality of life, lengthen life, and possibly even decrease the risk of cancer recurrence. The evidence is so strong that the National Comprehensive Cancer Network recommends that rehabilitation begin right away at cancer diagnosis.
What is cancer rehabilitation?
Cancer rehabilitation is the area of physical medicine that specializes in treating the physical and functional problems that often arise during cancer treatment, including fatigue, pain, difficulty walking, weakness, stiffness, poor balance, neuropathy, swelling, bladder control issues, and sexual problems. Cancer survivors should not have to face these challenges alone. With the help of a physical therapist specializing in cancer rehabilitation, many of these problems can be reduced, eliminated, and sometimes even prevented.
Where does exercise fit in?
Perhaps the most common and distressing side effect cancer survivors encounter is fatigue. For decades, survivors were told that rest was the best way to combat this tiredness. Now, researchers have learned that this was bad advice. Research has shown that too much time on the couch actually makes fatigue worse and survivors weaker. Exercise, it turns out, is one of the best treatment tools for reducing cancer-related fatigue. Study after study resoundingly backs this up.
Exercise is not only safe during chemotherapy and radiation, but it is critically important. By keeping the heart, lungs, and muscles strong and active, people who exercise during treatment have less fatigue, less nausea, less pain and weakness, and a much quicker recovery. Exercise may also protect the heart from the toxicities associated with some types of chemotherapy.
What else can cancer rehabilitation do for me?
Another set of common physical complaints of cancer survivors is pain, weakness, and decreased function. Regardless of the type of cancer treatment, most people should expect to return to full pain-free function after a recovery period. Unfortunately, however, this is often not the case. But there is hope. A cancer rehabilitation therapist can work with you to help you regain full mobility, strength, and function after cancer treatment, much like rehab after knee replacement surgery.
It is never too late to start feeling better. Whether you are just diagnosed, currently in treatment, or finished with active treatment, talk with your doctor about starting a rehabilitation program. You’ve been through a lot, and you deserve to return to the highest level of pain-free function possible. Cancer rehabilitation can help.
How can I start exercising when I feel so awful?
♣ First, check with your doctor to see if you have any specific exercise limitations. People with low blood counts, bone metastasis, or stage IV disease generally can safely exercise, but it’s always best to check first.
Ideally, you should begin exercising right away, before cancer treatments start to affect your joints, muscles,
♣ However, it is never too late to get moving and start gaining the benefits of exercise.
♣ Pick a type of exercise you enjoy. Not sure what that is? Walking is a good start.
♣ Start slowly, and gradually increase the time you spend exercising.
♣ When you’re done with your exercise, you should feel good (or at least as good as you did beforehand). If you feel worse, you may have done too much too soon. Scale it back next time.
♣ A great goal to work toward is 150 to 300 minutes of mild to moderate exercise per week.
♣ Aim to incorporate strength exercises about three times a week. Doing push-ups against a wall is a good start. You can progress to more difficult exercises as you’re able.
♣ Try to exercise five to six days out of the week, doing more on the days you feel better. Even walking or light exercise on your not-so-good days should help you feel better.
♦ ♦ ♦ ♦ ♦
Leslie J. Waltke is a physical therapist who has dedicated her practice to cancer care. She is the cancer rehabilitation coordinator for Aurora Health Care in Milwaukee, WI.
This article was printed from copingmag.com and was originally published in Coping® with Cancer magazine, 2015.
As my mother’s cherished clock collection dutifully marks time’s passage, time itself has taken on a much deeper meaning since cancer entered the picture.
Every hour, on the hour, a cacophony of chimes swells throughout our three-level home. A grand- father clock in the living room chimes Beethoven’s “Ode to Joy.” The golden face of a Rhythm clock gracefully opens up as it fills the dining room with the melody of Simon and Garfunkel’s “Bridge Over Troubled Water.”
After their solos, these two prima donnas are joined by the clocks in the upstairs and downstairs family rooms as they ring in the hour. Then, as an encore, the adorable little cuckoo in the basement pops out of its clock to announce the time.
These are just the clocks that make their presence known every hour. We also have clocks that are not so boisterous: the steady, dependable wall clock in my office; the adorable cat clock whose tail serves as its pendulum; the tall swinging clock held in the hands of an ornate antique female statue; the kitchen clock appropriately created entirely of forks and spoons; and the small clock face set in the stunning red rock of Zion National Park. Then, of course, there are the less stately digital timekeepers found on the microwave, the oven, and the bedside alarm clocks.
Our home hasn’t always been filled to the brim with clocks. For most of the ten years we’ve lived here, there was even a shortage of time devices. Our only clock hung shamefaced in the hallway perpetually displaying the wrong time, having been inoperative for years.
While we painted her bedroom Social Butterfly yellow, she was busy figuring out which of our walls would be graced by one of her precious clocks.
It wasn’t until two months ago, when my clock-obsessed mother moved in, that our home became flooded with clocks. While we laid new carpet in her basement living area and painted her bedroom Social Butterfly yellow, she was busy figuring out which of our walls would be graced by one of her precious clocks. My loving husband dutifully hung each one per Mom’s specifications. And after each clock was hung, she would stand back and smile gratefully. All was right with her world as long as her clocks were there to herald the passage of time.
Time itself has taken on a much deeper relevance for my mom and all who love her. She was diagnosed with Stage IV colon cancer in March 2013. Time seemed to stand still as the doctors delivered the prognosis that devastated us all: there was no cure for this insidious cancer that had already spread throughout her liver and abdominal wall by the time it was discovered. No radiation, no surgery, no hope of wrenching this horrific disease from my mother’s body. Our only hope was that chemotherapy could contain the tumors and keep them from spreading their destructiveness any further.
The two weeks I spent with my mother in the hospital after that initial diagnosis were a blur. The passage of time was marked by the flow of nurses in and out of her hospital room, day and night. The arrival of a plastic meal tray announced meal times. When a white-coated doctor appeared, we knew it was morning rounds. The only clock in the room was a silent, black-rimmed circle whose hands moved with aching slowness toward each number in their progression around and around and around the stark-white clock face.
Two years have now passed since that awful day. Is Mom healed? No. However, she has learned to live well with cancer.
Now, time passes in weeks that are labeled “a good week” or “a chemo week.” In the good weeks, she shops for new clothes, bakes for the family, and tends to her flower garden. During her chemo weeks, she goes to blood draws and sits for hours in the infusion center receiving the chemotherapy treatments that are containing the tumors and keeping her alive.
Months now are measured by CT scans. Every two to three months, the tumors lurking within her organs are made visible to the radiologists who compare and measure, and then pronounce the words we love to hear, “No new growth.”
How long will the cancerous tumors be controlled? Only time will tell.
The one thing we do know is that with each tick tock of Mom’s clocks, we have been given the gift of time. And we will cherish that gift for as long as time allows.
♦ ♦ ♦ ♦ ♦
Paige Kraus is a cancer caregiver living in Colorado Springs, CO.
From One Survivor to Another
These Are the Lessons I Learned While Battling Cancer
by Sara Nelson O’Brien
My battle with cancer began in the summer of 2012 when I was diagnosed with stage III endometrial cancer. This June, I celebrated two years of being cancer-free. It has been a hard fight, with plenty of good times, and more than enough difficult moments too. Along the way, I’ve learned a few lessons that I want to share with you – from one survivor to another.
Hold on to your faith.
It is easy to neglect religious practices, like prayer and scripture reading, when you feel tired and ill. However, if you are a spiritual person, now is the time to cling to your faith. It can become your greatest source of strength and comfort.
Seek friendship with a fellow
It helps to know you are not alone in your struggle, and it can be therapeutic to talk with someone who understands what you’re going through.
Exercise (with your physician’s OK).
Even a small amount of exercise each day can help combat stress, pain, and fatigue. Exercise is a valuable tool for recovery after cancer treatment.
Try not to stress about food.
I found that obsessing about eating increased my anxiety and decreased my appetite. Eat when you feel relaxed, and always have a variety of options on hand. Your sense of taste does change during chemotherapy. Try not to expect a favorite dish to taste the same as you remember. Approach every food as if you are trying something new. That way, you’re less likely to be disappointed if it doesn’t taste the way you expect.
It helps to know you are not alone in your struggle.
Talk to a social worker.
Your hospital or clinic should be able to connect you with an oncology social worker. I was fortunate to meet one after my first oncologist visit. It was part of my clinic’s protocol, and the introduction was invaluable. Social workers have experience dealing with all the issues that come along with a cancer diagnosis, and they can help you establish a plan for managing bills, returning to work, talking with your family, taking care of your emotional health, and many other challenges cancer survivors face.
Have a sense of humor.
It’s OK to laugh during treatment. Some of my best moments were spent joking with my fellow radiology “inmates.”
Let people know what you need.
Friends and family want to help you. Give them practical ideas, like grocery shopping, rides to and from treatment, house cleaning, preparing meals, walking the dog, or even cleaning the litterbox.
Give yourself a break.
Not only are you battling a life-threatening disease, but you are also experiencing the often-harsh side effects of potent treatments. You will feel tired. You will need to scale back at work and at home. Don’t feel guilty about it. You need your energy to attack the cancer.
Keep in touch with your friends.
Through phone calls, group texts, email, Facebook, Twitter, whatever method of communication appeals to you. Also, feel free to let people know when you are tired and not up for a visit or a chat. Your friends will understand.
Elect a “sanitation officer” in your home.
Their job is to help protect your weakened immune system by ensuring visitors wash their hands upon entering your house. My mom accepted this role for me, and she laid down the cleanliness law. She even had a powwow with my husband and son when she felt the amount of soap in the dispenser wasn’t decreasing to her satisfaction.
Get out of the house.
If you are able, a change of scenery can do wonders for your mood. My husband and I would often go out for ice cream. I would eat it in the car while enjoying the countryside.
Don’t compare yourself with other cancer fighters.
Treatment plans, energy levels, and medication responses are very individual. One person may be able to train for a half marathon during treatment. Another may be lucky to get up and out of bed each morning. Both are doing what they can to battle this beast. Try not to judge yourself, or others.
Wear your superhero t-shirt …
and socks and undies on treatment days. It really does help!
♦ ♦ ♦ ♦ ♦
Sara O’Brien is a mother, nurse, caregiver, cancer survivor, and author of The Bald Headed, Tattooed, Motorcycle Mama’s Devotional Guide for Women Battling Cancer and Those Who Love Them. To learn more about Sara, visit her website SaraNelsonObrien.com.
Don’t Underestimate the Importance of Good Nutrition during Cancer Treatment
by Jennifer Fitzgibbon, MS, RDN, CSO, CDN
A cancer diagnosis is life altering, to say the least. As soon as you hear the words “you have cancer,” you are thrust into a world of complex medical language, difficult treatment decisions, and overwhelming emotions. Your diet is probably the last thing on your mind.
However, you may want to think twice about putting nutrition on the backburner after a cancer diagnosis. Nutrition is an important part of cancer care. Eating the right kinds of foods,
in the right amounts, and at the right times can make a noticeable difference in your cancer treatment and recovery. Research has shown that eating well during cancer treatment can help you
♦ keep your scheduled appointments;
♦ increase your strength and energy;
♦ stay hydrated;
♦ boost your immune system;
♦ decrease your risk of infection;
♦ maintain your prescribed treatments;
♦ heal and recover more quickly;
♦ maintain a healthy weight;
♦ preserve your body’s store of nutrients; and
♦ better tolerate treatment-related side effects.
Treating Nutrition Problems Early
Both cancer and its treatments can affect the way your body tolerates certain foods and uses nutrients. Likewise, your nutritional status can affect how well you tolerate cancer treatments. For example, someone who is underweight or malnourished may not be able to endure cancer treatment as well as someone who is well nourished. Therefore, it’s important to find and treat nutrition problems early.
Plant foods should form the basis of your diet. At each meal, try to fill two-thirds of your plate with colorful plant foods.
A thorough nutrition screening and assessment should be done soon after cancer diagnosis in order to find problems that may affect how well your body can deal with the effects of cancer treatment. Finding and treating these problems early can help you maintain an optimal weight, prevent nutrition-related treatment issues, and improve recovery. Your nutrition assessment can also assist your doctor or dietitian in developing a personalized plan to help you eat well during cancer treatment.
Getting the Right Nutrients
Eating well means eating a variety of foods that provide the nutrients you need to maintain your health while fighting cancer. These nutrients include protein, carbohydrates, fat, water, vitamins, and minerals. A healthy diet during cancer treatment should consist of an assortment of foods from all of the food groups.
Plant foods should form the basis of your diet. You should eat five to eight servings of fruits and vegetables every day. At each meal, try to fill two-thirds of your plate with colorful plant foods. Keep in mind, however, that some people may need to avoid eating raw fruits and vegetables at certain times during cancer treatment; for example, when your blood counts are low. Talk with your doctor about whether there are any foods you need to avoid and when you can introduce them back into your diet. In the meantime, cooked fruits and vegetables are always an option.
Protein assists with growth and the repair of body tissue. It is also essential to maintaining a healthy immune system. People with cancer often need extra protein. Good sources of protein include lean meat, fish, poultry, dairy products, nuts, dried beans, peas, lentils, and soy foods. Supplemental shakes can also provide additional protein if needed.
Carbohydrates supply the body with the bulk of the calories it needs to function properly. The amount of calories you need depends on your height, weight, gender, age, and activity level. Good sources of carbohydrates include fruits, vegetables, whole grain breads, pasta, whole grain cereals, dried beans, peas, and lentils. Refined carbohydrates, like white breads, white rice, and pasta, can provide needed calories, but they should be consumed sparingly.
Fats play an important role in nutrition. Contrary to what some people believe, you do need healthy fats in your diet, as they are a valuable source of energy. Fats are found in butter, margarine, oils, nuts, seeds, dairy products, meats, fish, and poultry. However, you should keep in mind that some types of fats are considered healthier than are others.
Healthy fats, like those contained in nuts and seeds, help protect against heart disease, decrease triglycerides, and lower blood pressure. Healthy fats are divided into two groups: monounsaturated fats and polyunsaturated fats, which include omega-3 and omega-6 fatty acids.
Unhealthy fats include trans fats and saturated fats. The most common sources of trans fats in our diets are partially hydrogenated vegetable oils. These are found in many convenience items, baked goods, and deep fried foods. Saturated fats are found mainly in animal sources. It’s a good idea to limit the amount of trans fats and saturated fats you consume.
Vitamins and minerals help us to heal and grow. They also allow the body to use the energy (calories) supplied in foods. A person who eats a balanced diet usually gets plenty of vitamins and minerals from the food they eat. However, eating a balanced diet can be challenging when you are undergoing cancer treatment, particularly if bothersome treatment side effects like nausea, vomiting, mouth sores, and taste changes persist. If you think you’re not getting the vitamins and minerals you need in your diet, ask your doctor or dietitian about whether you should take a daily multivitamin or mineral supplement.
Water and other fluids are also essential to your health. If you don’t take in enough fluids, you may become dehydrated, which can lead to high blood pressure, dizziness, nausea, and mouth sores. In general, you should drink about eight 8-ounce glasses of water a day to stay hydrated. If you are having trouble taking in enough liquids, or if you are experiencing vomiting or diarrhea, talk to your doctor about what you can do to prevent dehydration.
Good nutrition is important for everyone, especially people undergoing cancer treatment. Not only will eating a healthy diet help you cope better with the side effects of treatment, but it may also help those treatments work better. If you’ve been diagnosed with cancer, talk with your doctor about how you can incorporate nutrition into your cancer care plan.
Minimizing Treatment Side Effects with Good Nutrition
Cancer treatments can cause side effects, such as weight loss, fatigue, nausea, diarrhea, constipation, low blood counts, and increased risk of infection. Did you know that getting the right nutrition can help to minimize these side effects and help you avoid delays or interruptions in your treatment? The following are some common treatment-related side effects and suggestions for how you can use nutrition to combat them:
Weight Loss/Weight Gain
A dietitian can help you monitor your weight and develop a nutrition and lifestyle plan to help you achieve and maintain a healthy weight.
Eat small, frequent meals and nutrient-dense foods to give you more energy.
A bland diet of cold foods may be easier to tolerate when you are experiencing nausea and vomiting. Ginger and peppermint products can help ease nausea.
Talk with your dietitian about increasing protein in your diet to help build blood cells, and maybe even taking iron and folic acid supplements to help boost your red blood cell count.
Low Blood Counts
Eating a well-balanced, protein-rich diet can help your blood counts return to a safe level.
Eating a low-bacterial diet, such as avoiding thin-skinned raw fruits and vegetables, can help you avoid complications caused by neutropenia.
In addition to staying hydrated, a fiber-rich diet can help combat constipation and diarrhea.
Trying new foods, marinades, spices, and seasonings may help offset treatment-related taste changes.
Mouth Sores/Dry Mouth
Eating soft, bland foods, as well as lukewarm or cool foods, may be soothing.
♦ ♦ ♦ ♦ ♦
Jennifer Fitzgibbon is a board-certified registered oncology dietitian at Stony Brook University Cancer Center in Stony Brook, NY, where she helps cancer survivors maintain their weight, strength, and quality of life during cancer treatment.
To learn more about diet and nutrition during cancer treatment, visit copingmag.com/nutrition.
Chrisley Knows Best
Reality Show Matriarch Julie Chrisley Shares What She Learned from Surviving Breast Cancer
by Laura Shipp
It’s no secret that the Chrisleys – stars of the USA Network reality series Chrisley Knows Best – live an opulent lifestyle. The show, which bills itself as a real-life family comedy, follows the ostensibly fairy-tale lives of multi-millionaire real estate developer Todd Chrisley, his wife, Julie, and their five children. Always dressed to the nines in designer labels, and living in a 30,000 square foot Atlanta mansion, the Chrisley family may seem on the surface like typical vainglorious reality stars.
However, once you look past the Gucci suits and Louis Vuitton handbags, you’ll see that what the Chrisleys value most is family. This was never more evident than during Julie’s battle with breast cancer in 2012 – well before TV cameras began documenting the family’s side-splitting antics.
Julie recently opened up to Coping® about how facing breast cancer quickly taught her who’s really in control (Hint: It’s not Todd.) and reaffirmed a lesson she’s known all along – that the most important things in life are those that money can’t buy.
Julie was diagnosed with breast cancer in March of 2012 after a not-exactly-routine mammogram. She was only 39 years old (45 is the current, though controversial, recommended screening age), and she had no family history and no symptoms. What she did have, however, was a husband with strong opinions who doesn’t easily back down. After all, the Chrisley referenced in the show’s title is Todd.
“I had a husband,
five children, and
a business to take care of.
I had no time to be sick.”
Whether you want to call it intuition, divine intervention, or just a hunch, what matters is Todd was convinced Julie needed a mammogram, and one morning he insisted that she get screened. So she called her doctor that day.
“They told me my insurance probably wouldn’t pay for the screening,” she says, “but I went ahead and got it because I knew Todd would not give up.”
It turns out that Chrisley did know best. The mammogram revealed a malignant lump. And life as they knew it came to a halt for Julie and the rest of the family.
“My life was crazy and busy during that time. I had a husband, five children, and a business to take care of. I had no time to be sick,” Julie says. “Boy, did I learn quickly that God was in control and not me!”
Though cancer upended her life, Julie says she still felt blessed. Her cancer was early stage, it was removed completely with a double mastectomy, and Julie required no further treatment. However, like many breast cancer survivors, Julie had a difficult time accepting the loss of her breasts.
“After breast cancer, your body is forever changed,” she says. “Our society puts so much emphasis on breasts, and to lose them is a traumatic experience. I had to keep telling myself how blessed I was because my cancer had not spread and I was able to have reconstruction right away.”
Todd also played a large part in helping Julie regain her self-esteem. “He was consistent from the very beginning,” she says. “I will never forget him saying to me that as long as I survived, nothing else mattered. He never once made me feel insecure. We became closer than ever, and I realized how fortunate I am to have him in my life.”
In fact, according to Julie, Todd was “the best nurse a girl could ask for.”
“When I came home from the hospital, he had the room covered with flowers,” she says. “He was there for me every minute of the day. He took care of all of my medicines and changed every bandage, which was amazing considering he passes out at the sight of blood! He never one time flinched.”
Julie is now three years cancer-free. (“Praise God!” she says.) Through everything, Julie says one lesson has stuck with her: “Cancer has reminded me that the things that matter most in life can’t be bought.”
And with that, it might be safe to say that maybe it’s Julie who knows best.
♦ ♦ ♦ ♦ ♦
You can catch Julie, Todd, and the rest of the Chrisley family on the USA Network as season three of Chrisley Knows Best returns November 10 and airs Tuesdays at 10/9c.