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Men, Cancer, and Sexual Health

by Joseph B. Narus, DNP, GNP-BC, ANP

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Dr. Joseph Narus

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.

Erectile Dysfunction
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.

Orgasm Difficulties
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.

Sexual Incontinence
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.

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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.

This article was published in Coping® with Cancer magazine, March/April 2016.

Chemo Brain

What Causes It and What You Can Do about It

by Arash Asher, MD

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Dr. Arash Asher

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.

The Symptoms
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

Possible Causes
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.

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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.

This article was published in Coping® with Cancer magazine, May/June 2016.

National Cancer Survivors Day 2016: Communities to Celebrate Cancer Survivors, Raise Awareness on June 5

 

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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

On Twitter: We can do more to lessen the burden of cancer. #CelebrateLife, 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

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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 un-certainties, 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 published in Coping® with Cancer magazine, January/February 2016.

What about a Support Group?

by Mary C. McCarthy, BSN, RN-BC

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Contrary to what you might believe, support groups don’t have to be pity parties. Most people who attend have great courage and willingness to share and learn from others.

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.

Author of Article photo

Mary McCarthy

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 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

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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.

Author of Article photo

Beth Williams

Geoff was diagnosed with late-stage pancreatic cancer in August 2013 and given just weeks to live. And live he did, inviting friends and family to spend his last weeks with him. What a gift! He showed us that no matter how much time we have, we can make the most of it – right here, right now. Our family mem- bers and Geoff’s friends had one another for support and comfort when the feelings of pending loss welled up and spilled out.

Geoff chose how he was going to spend those last few weeks, and he lived them mostly on his own terms, despite the situation. He declined chemo treatments when he learned they wouldn’t improve his quality of life or longevity. He had returned to his job as a metalworker for a few days after his diagnosis, until the doctor advised him it wasn’t a good idea since he had massive blood clots in his lungs. He told me on the phone, “Screw the job. I’m just going to BE.”

Always the practical one, Geoff gave his siblings and close friends jobs to do to help with his imme­diate needs and later with memorial services. He and another brother, Bryan, planned a huge bonfire for what turned out to be Geoff’s last weekend on earth. Cousins and friends joined in, too, bringing food, lighting a pathway from the house to the bon­fire using solar-powered garden lamps, sharing favorite memories, joking with Geoff, and getting him to the bonfire with medical equipment in tow. I’ve never felt more alive or grateful than during that time.

Geoff inspired me to refocus my life and my career-coaching practice. Now I help clients define and create the lives and the careers they want. He taught me that we do have choices, even when it seems we have none.

What will you choose to do with your next chapter?

♦ ♦ ♦ ♦ ♦

Beth Williams is an executive-, career-, and life-coach, as well as a brain cancer survivor. She created Your Flourishing Life Coaching to help cancer survivors figure out what’s next and learn how to live fearlessly, with purpose, passion and pres- ence. Beth also helps middle- and senior-level professionals and managers explore what nourishes their minds, bodies, and spirits; become even better leaders; reduce stress; and improve their work-life balance.

This article was published in Coping® with Cancer magazine, January/February 2016.

What Cancer Survivors Need to Know about Lymphedema

 

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To help prevent lymphedema-worsening infections, use cream or lotion to keep the skin moist.

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.

Risk Factors
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.

Managing Lymphedema
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.

Exercise
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.

Treatment
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
Exercise
Bandages
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

This article was published in Coping® with Cancer magazine, January/February 2016.

One Step at a Time

How I Went from Being Unable to Walk After Cancer to Running Marathons

by Matt Jones

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Matt Jones runs in his fourth marathon – the Perth City to Surf Marathon in Perth, Australia – on his fourth continent in August 2013. It took him just over six hours to finish the race.

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.

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Matt Jones

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.

Even with their help, I was only able to walk five yards before becoming exhausted. The physical therapist got a wheelchair to take me back to my room.

As I lay in my hospital bed that after­noon, I visualized myself completing a marathon, a feat I was crazy to even dream of tackling after only being able to take a few assisted steps.

My first goal? Take one step by myself. After that, my goal became making it down the hospital hallway and back. Goal by goal, step by step, I learned how to walk again. Then I began to run. Two years and four months later, I completed the 2006 San Diego Rock ‘n’ Roll Marathon.

I’ve run six more marathons since then. However, the greatest finish line I have ever crossed was on Mother’s Day 2004, when I walked out of the hospital after a successful bone marrow transplant. I have been in remission ever since.

Looking back over my marathon with cancer, just like each physical marathon I’ve run since then, I came through it by taking one step at a time toward a goal I set out to achieve.

In life, it’s not about your circum­stances, but the choice to keep moving forward one step at a time. Today, the ultimate victory for me is sharing my story and inspiring others through the mara­thons in their own lives. Just like my dad told me – that I could do it, one step at a time – you, too, can cross the finish line of any marathon that you are running.

♦ ♦ ♦ ♦ ♦

Matt Jones went from being a three-time cancer conqueror to completing seven marathons on seven continents and is now an inspirational and motivational leadership speaker and author. You can learn more about Matt at MatthewDJones.com.

This article was published in Coping® with Cancer magazine, March/April 2016.

Tools for Coping with Stress

When You or a Loved One Has Cancer

by William Penzer, PhD

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Our minds have the unique ability to allow us to journey to pleasant places without leaving our homes.

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:

1. Journaling
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.

2. Laughter
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.

Author of Article photo

Dr. William Penzer

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.

4. Distraction
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.

5. Yoga
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.

7. Fantasy
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.

8. Meditation
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.

9. Creativity
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.

10. Mindfulness
Though mindfulness has become the buzzword of the day, it really is a simple, but powerful, tool that helps us relax and de-stress. All it requires is that you focus on inner sensations, or outer sounds and images. For example, how does the soap feel on your body when you shower, and what feelings occur on your skin when you rinse? How does the music coming from your headphones sound, and how do those headphones feel on your head or in your ears? Chew your food slowly and pay attention to the feelings in your mouth and on your tongue. Focusing on the stimuli that surround you can help you leave your worrisome world for just a bit and tune in to the little things we often neglect.

When you are dealing with cancer as a patient (my term is survivor) or as a caregiver (my term is heart and soul giver), leaving your Cancerville world for just a bit can be very helpful in maintaining your balance. Try any or all of the tools above to see what works best for you, and then stay with it throughout your Cancerville journey.

♦ ♦ ♦ ♦ ♦

Dr. William Penzer is a psychologist in private practice in Ft. Lauderdale, FL, and a frequent speaker at cancer-related conferences. He has written three books and numerous articles to help people cope better with cancer.

To learn more about Dr. Penzer and his work, visit cancerville.com. You can also download audio samples of autogenic relaxation, guided imagery, and meditation practices.

This article was published in Coping® with Cancer magazine, January/February 2016.

Supporting Your Wife through Cancer

by Rene Barrat-Gordon, LISW-S, ACSW

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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.

Author of Article photo

Rene Barrat-Gordon

Be honest.
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.

This article was published in Coping® with Cancer magazine, January/February 2016.

After Cancer, Looking Forward Gratefully

by Amy Lynn Dee, EdD

Wellness image

Dr. Amy Lynn Dee

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.

1. Trust
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.

2. Boldness
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.

3. Gratitude
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.

This article was published in Coping® with Cancer magazine, March/April 2016.

Eat Well. Be Well.

Choosing Healthy Eating during Cancer Treatment
and Beyond

by Julie Lanford, MPH, RD, CSO, LDN

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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.

Author of Article photo

Julie Lanford

Nutrition Challenges during Treatment
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.

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.

This article was published in Coping® with Cancer magazine, March/April 2016.

Take Control of Worry

by Sage Bolte, PhD, LCSW, OSW-C, CST, and Drucilla Brethwaite, MSW, LCSW, OSW-C

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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.

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.

Author of Article photo

Dr. Sage Bolte

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.

Author of Article photo

Drucilla Brethwaite

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.

This article was published in Coping® with Cancer magazine, March/April 2016.

Embracing the Positive Side of Cancer

by Susan M. Krauss

Inspiration image

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.

This article was published in Coping® with Cancer magazine, March/April 2016.

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

Prostate Cancer Image

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.

Author of Article photo

Tatiana Starr

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.

Author of Article photo

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.

This article was published in Coping® with Cancer magazine, January/February 2016.

Pro Football Hall of Famer Troy Aikman
Gets Personal about Melanoma

 

Photo by Cancer Type

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.”

“[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.

This article was published in Coping® with Cancer magazine, March/April 2016.

Ellen Britton – My Happy Cancer Story

by Alicia King

Photo by Cancer Type

Ellen Britton: “I feel like a total phony even talking to Coping with Cancer. What am I coping with? I got lucky and I know it.”

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.

Author of Article photo

Alicia King

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.”

“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?

♦ ♦ ♦ ♦ ♦

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.

This article was published in Coping® with Cancer magazine, March/April 2016.

ESPN Reporter and Cancer Survivor
Shelley Smith Shares Her Story

by Kaylene Chadwell

Celebrity Cancer Survivor


(Photo by John Mattera)

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.’”

Celebrity Cancer Survivor

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.”

Celebrity Cancer Survivor

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.’”

♦ ♦ ♦ ♦ ♦

This article was published in Coping® with Cancer magazine, March/April 2016.

Eating Well during Cancer Treatment

by Carolyn Katzin, MS, CNS

Author of Article photo

“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.

Author of Article photo

Carolyn Katzin

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 Effects
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!

♦ ♦ ♦ ♦ ♦

Carolyn Katzin is an Integrative Oncology Specialist at the Simms/Mann – UCLA Center for Integrative Oncology in Los Angeles, CA.

This article was published in Coping® with Cancer magazine, January/February 2016.

Occupational Therapy for Cancer Survivors

Helping You Get Your Life Back after Cancer

by Claudine Campbell, MOT, OTR/L, CLT

Knowledge image

If you’re having memory problems, an occupational therapist may suggest that you set reminders on your smartphone so you don’t forget important tasks or appointments.

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.

Author of Article photo

Claudine Campbell

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 published in Coping® with Cancer magazine, November/December 2015.

Parent to Parent

Advice for Raising a Child with Cancer

by Ellie Ewoldt

Photo by Cancer Type

Ellie Ewoldt and her son Chase share a smile.

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.

Be prepared.
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.

Get involved.
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 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

Wellness image

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.

Author of Article photo

Joanne Rash

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.

Author of Article photo

Lori Seaborne

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.

♦ ♦ ♦ ♦ ♦

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 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

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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.

Author of Article photo

Courtney Bitz

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.

♦ ♦ ♦ ♦ ♦

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.

This article was published in Coping® with Cancer magazine, November/December 2015.

Determined to Live

by Virginia Repsys

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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.

This article was published in Coping® with Cancer magazine, November/December 2015.

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

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Discuss you fertility preservation options with your doctor before starting cancer treatment.

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.

Author of Article photo

Dr. Mary Samplaski

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.

Author of Article photo

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.

This article was published in Coping® with Cancer magazine, November/December 2015.

Understanding Multiple Myeloma

 

Photo by Cancer Type

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
Constipation
Feeling very tired
Muscle weakness
Restlessness
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
Diarrhea
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

This article was published in Coping® with Cancer magazine, November/December 2015.

Are You at Risk for Falls?

For most cancer survivors, the answer is yes.

by Cassandra Vonnes, MS, ARNP, GNP-BC

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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.

Medications
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 diagnosed cancer
will experience a fall at home within the first six months
after their diagnosis.

Author of Article photo

Cassandra Vonnes

Dehydration
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.

Electrolyte Imbalances
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.

Neuropathy
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.

♦ ♦ ♦ ♦ ♦

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.

This article was published in Coping® with Cancer magazine, November/December 2015.

Top 5 Journaling Myths Busted!

by Sharon K. Swanson, MFA, MPA

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Don’t let these common myths keep you from experiencing the joy and emotional healing that can happen when you journal through cancer.

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.

Author of Article photo

Sharon Swanson

Myth #3: I should be documenting my illness.
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.

This article was published in Coping® with Cancer magazine, November/December 2015.

The Sun Will Shine Again

by Adrienne Slaughter

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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.

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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.

This article was published in Coping® with Cancer magazine, January/February 2016.

Women, Cancer, and Sexual Health

by Lynn Wang, MD

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"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.

Author of Article photo

Dr. Lynn Wang

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 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

Author of Article photo

Dr. Brent Braveman

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 Therapy Program
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:

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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 published in Coping® with Cancer magazine, September/October 2015.

The Daily Zoo

Healing Together

by Chris Ayers

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On a visit to the San Diego Zoo Safari Park, Chris channels his inner ape. Excitement was in the air as he and his wife, Thasja, were counting down the days until the arrival of their long-awaited son.
(Photo by Tim Vechik)

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.

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“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.

Healing Together
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.

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“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

This article was published in Coping® with Cancer magazine, January/February 2016.

How to Tell Your Kids That You Have Cancer

7 Essential Questions You’ll Need to Answer

by Barbara J. Golby, LCSW-R

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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.

1 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.

Author of Article photo

Barbara Golby

2 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.

3 Did I do something to give you cancer?
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.

4 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.

5 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.

6 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.

7 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 published in Coping® with Cancer magazine, September/October 2015.

The Aftermath of Cancer

by Val Jones

Author of Article photo

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:

1 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.

2 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.

3 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.

This article was published in Coping® with Cancer magazine, November/December 2015.

Star of HGTV’s Flip or Flop Tarek El Moussa Takes on Thyroid Cancer

by Laura Shipp

Celebrity Cancer Survivor

Tarek and Christina on location of their TV show Flip or Flop
(Photo by Thomas Pellicer)

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.

The Email
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.”

Celebrity Cancer Survivor

Tarek and Christina El Moussa
(Photo by Thomas Pellicer)

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.

“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.

This article was published in Coping® with Cancer magazine, January/February 2016.

Lessons Learned

by Mary Dunnewold

Inspiration image

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.

This article was published in Coping® with Cancer magazine, November/December 2015.

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

About Coping

Good handwashing is the easiest and most effective way to prevent the spread of germs.

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.

Author of Article photo

Dr. Roy Chemaly

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.

Author of Article photo

Linda Graviss

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 Settings
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.

This article was published in Coping® with Cancer magazine, September/October 2015.

Writing Your Cancer Journey

by Ali Zidel Meyers, MSW

Wellness image

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.

Author of Article photo

Ali Zidel Meyers

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.

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.

♦ With Others
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.

♦ ♦ ♦ ♦ ♦

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 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.

Author of Article photo

Dr. William Penzer

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 Distractions
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.

This article was published in Coping® with Cancer magazine, September/October 2015.

Your Relationship When Treatment Ends

Facing the Transition Together

by Karen Kayser, PhD, MSW

Wellness image

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.

Author of Article photo

Dr. Karen Kayser

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 published in Coping® with Cancer magazine, July/August 2015.

Quitting Smoking after Cancer

Why Bother?

by Suhana de Leon-Sanchez, RN, NP-BC, CTTS, and Jamie Ostroff, PhD

Wellness image

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?”

Wrong.
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.

Author of Article photo

Suhana de Leon-Sanchez

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.

Author of Article photo

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.

♦ ♦ ♦ ♦ ♦

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.

This article was published in Coping® with Cancer magazine, November/December 2015.

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

Knowledge image

Peripheral neuropathy can cause a pins-and-needles sensation in your hands or feet.

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 peripheral neuropathy?
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.

Author of Article photo

Robert Knoerl

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.

Author of Article photo

Grace Kanzawa

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.

This article was published in Coping® with Cancer magazine, September/October 2015.

How Martin Sheen Helped Me Survive Cancer

by Susan Groh

Inspiration image

Martin greets Susan with a hug after hearing her story.

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.

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Susan Groh

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.

This article was published in Coping® with Cancer magazine, November/December 2015.

What Do We Tell the Kids?

by Katelyn Uyehara, MSW, LICSW

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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.

Author of Article photo

Katelyn Uyehara

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 routine.
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.

For more resources to help your kids cope with your cancer diagnosis, visit DFCI.org/FamilyConnections and copingmag.com/relationships.

This article was published in Coping® with Cancer magazine, May/June 2015.

Surviving the Emotional Roller Coaster of Cancer

by John Leifer, with Lori Lindstrom Leifer, MD

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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.

Author of Article photo

John Leifer, with Dr. Lori Leifer

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 Levels?
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 Distress
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.

♦ ♦ ♦ ♦ ♦

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.

This article was published in Coping® with Cancer magazine, November/December 2015.

Manage Your Stress with Meditation

by Alejandro Chaoul, PhD, and Kira Taniguchi, MA

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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.

Author of Article photo

Dr. Alejandro Chaoul

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.

Author of Article photo

Kira Taniguchi

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 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

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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 fertility?
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.

Author of Article photo

Dr. Lisa Kolp

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 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

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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.

Author of Article photo

Dr. Julie Knight

Medication
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.

Author of Article photo

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.

Nonpharmacologic Options
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.

Author of Article photo

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.

Medical Procedures
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.

This article was published in Coping® with Cancer magazine, May/June 2015.

Something Old, Something New

Instead of planning my perfect wedding, I was fighting for my life.

by Holly J. Bertone

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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 was cruel.
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.

This article was published in Coping® with Cancer magazine, November/December 2015.

12 Tips for Coping with Cancer during the Holidays

by Kaylene Chadwell

Wellness image

When you have limited time and energy, it’s best to spend it with the people who matter most to you, doing the things you most enjoy.

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 season.
Think about what the holi­day season means to you. Focus on what’s most important to you and your family. Don’t get too wrapped up in getting the best gift for loved ones or making the perfect family dinner. Ap­preciate being around the people you love and enjoy the memories you make.

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 an invitation
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.

7 Relax.
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.

♦ ♦ ♦ ♦ ♦

This article was published in Coping® with Cancer magazine, November/December 2015.

Living Well with Lung Cancer

 

Photo by Cancer Type

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.

Cure
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.

Control
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.

Comfort
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.

♦ ♦ ♦ ♦ ♦

Source: American Lung Association, lung.org

This article was published in Coping® with Cancer magazine, November/December 2015.

What Can Cancer Rehabilitation Do for Me?

by Leslie J. Waltke, PT, DPT

Wellness image

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.

Author of Article photo

Leslie J. Waltke

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.

♦ ♦ ♦ ♦ ♦

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 published in Coping® with Cancer magazine, 2015.

Tick Tock

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.

 

Wellness image

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.

About Coping

Paige Kraus

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.

This article was published in Coping® with Cancer magazine, September/October 2015.

From One Survivor to Another

These Are the Lessons I Learned While Battling Cancer

by Sara Nelson O’Brien

Inspiration image

To help unleash her inner superhero, Sara wore these super socks to every chemo treatment.

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 survivor.
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.

This article was published in Coping® with Cancer magazine, September/October 2015.

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.

Author of Article photo

Jennifer Fitzgibbon

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.

♦ ♦ ♦ ♦ ♦

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.

This article was published in Coping® with Cancer magazine, September/October 2015.

Chrisley Knows Best

Reality Show Matriarch Julie Chrisley Shares What She Learned from Surviving Breast Cancer

by Laura Shipp

Celebrity Cancer Survivor

Meet the Chrisleys, the picture-perfect Southern family at the center of all the laughs on USA Network’s reality series Chrisley Knows Best: Savannah Chrisley, Chase Chrisley, Todd Chrisley, Julie Chrisley, Lindsie Chrisley Campbell, and Grayson Chrisley.
(Photo by Andrew Eccles/USA Network )

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.”

Julie Chrisley
(Photo by Andrew Eccles/USA Network )

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.

This article was published in Coping® with Cancer magazine, November/December 2015.

My Parent Has Cancer

10 Tips for Teens Coping with a Parent’s Cancer

by Marc Silver and Maya Silver

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You’re a teen, and your mom or dad was just diagnosed with cancer. You may be scared, sad, mad, nervous. And if one of your first thoughts is Who’s going to drive me to my friend’s house after school, don’t feel guilty. That’s a perfectly normal teenage concern. But things won’t exactly be normal as the months of treatment go on. You’ll need to find ways to cope.

After interviewing more than 100 teens and many cancer experts, we’ve put together these 10 tips for coping with a parent’s cancer.

1. Get The Information You Need.
Jackie, whose dad had cancer, told her parents, “If you receive information and you think, This is some­thing we shouldn’t tell Jackie, that’s what I want you to tell me.” Kaitlin, on the other hand, would retreat to her room with earbuds in place to block out thoughts of her mom’s cancer.

Whether you’re an information hound or a minimalist, you need to keep up with key developments. Tell your parents the best way to communi­cate with you: family meeting, sticky notes on the bathroom mirror, a knock on your door and an update. Just make sure you stay in the loop in some way.

2. Google With Caution.
Online information about cancer isn’t always correct – or may not apply to your parent’s situation. If you have a question, ask mom or dad. If they don’t know the answer, they can ask their cancer doc.

Even after cancer rudely barges into your family’s life, you’re still allowed to have a good time.

3. Find A Confidante.
It could be a relative, a teacher you’re close to, or a friend who’s gone through a similar experience.

4. Share Any Angry Feelings.
“If you don’t talk about your anger, it can boil and boil … and then boil over,” says school social worker Melissa Ford. “You’ll snap at a teacher, wreck a friendship, or do something dumb.”

5. Social Media Can Help … Or Hurt.
Talking about your parent’s cancer online can bring support from friends. But a mean class­mate might tease you, or a self-centered one may say something like, “You think you’ve got problems, listen to what’s going on with me.”

Also, check with your parents be­fore going social – maybe your mom or dad hasn’t told the boss or certain friends, so your post could create an awkward situation.

6. Tell Your Teachers.
Zoning out in class? Struggling to stay afloat in the sea of homework? Do yourself a favor and let someone at school know what’s up. (Or ask mom or dad to do this for you.) Perhaps your teachers can adjust your workload. If you’re really struggling, see if the school would grant you a get-out-of-class pass for rough moments so you can take a breather in the guidance office.

7. Don’t Feel Guilty If You Get Mad At Your Mom Or Dad.
That’s part of being a teen­ager. One girl we interviewed told her mom, “I can’t even get mad at you now because you have cancer.” Her mom replied, “Even though I’m going through a hard time, I’m still able to manage that you get mad at me.” (Of course, your parents will be grateful if you’re nice to them whenever possible.)

8. No Need To Be Optimistic 24.7.
A positive attitude can make you feel better. But there may be days when everything sucks. It’s okay to express those feelings. “Give yourself permission to feel what you feel,” says child psychiatrist Paula Rauch.

9. Say Sayonara To Stress.
If you’re having the Worst Day of All Time, what will make things better? A run? A video game? Writing in your diary? All of these activities are coping mechanisms. Figure out what works for you, and bust out your stress-busters when you’re bummed.

1O. It’s Ok To Smile, Laugh, And Have Fun.
Even after cancer rudely barges into your family’s life, you’re still allowed to have a good time: watching a comedy with friends, just hanging out, or maybe a family game night. Your parents will be glad to spend time with you – and you may find it’s not too bad spending time with them either.

♦ ♦ ♦ ♦ ♦

Marc Silver is the author of Breast Cancer Husband. His daughter Maya was 15 years old when her mom was diagnosed with breast cancer (her mom is now in good health). Together, Maya and Marc have coauthored My Parent Has Cancer and It Really Sucks: Real-Life Advice from Real-Life Teens (ParentHasCancer.com).

This article was published in Coping® with Cancer magazine, July/August 2015.

Managing the Fear of Prostate Cancer Recurrence

 

Prostate Cancer Image

Don’t worry alone. Joining a support group offers the chance to share your feelings and fears with others who understand.

The completion of prostate cancer treatment can bring both relief and worry. When caught early, initial treatment can lead to cure, and most men will live cancer-free for years, possibly forever. However, despite successful treatment, you may still feel worried, anxious, or fearful that your cancer may come back.

The good news is that the five-year survival rate for men with localized prostate cancer is nearly 100 percent. However, up to 40 percent of all men treated for prostate cancer will experi­ence a recurrence. Therefore, it is important to understand your risk for recurrence, but it is equally important to live your life after cancer.

The fear of recurrence is normal and reasonable for all cancer survivors. Though you cannot control whether your cancer recurs, you can control how much you let the fear of recurrence affect your life.

What is cancer recurrence?
Cancer recurrence is the return of cancer after a period when no cancer cells could be detected in the body. When a man has treatment for prostate cancer, his PSA level will drop significantly. Regular testing with PSA is one of the tools the physician will use to measure if the cancer has returned. There are two types of prostate cancer recurrence: biochemical recurrence and metastatic prostate cancer.

What is biochemical recurrence?
When PSA levels rise to a certain threshold after prostate cancer treatment, this is known as biochemical recurrence. This means that some cancer cells have survived and are producing PSA. If this happens, your doctor will order addi­tional tests and make recommendations for how to manage your disease. Just as you did at the time of diagnosis, consider a second opinion and seeking care from a multidisciplinary team.

Telling yourself not to worry or criticizing yourself for being afraid won’t make these feelings go away.

There are differing opinions in the medical community about how best to manage a biochemical recurrence, ranging from immediate treatment to delayed treatment. Many factors will need to be considered, including the characteristics of your initial cancer, the rate of your PSA doubling time, your initial treatment option, and your personal health. Talk with your health­care team to make a plan.

What is metastatic prostate cancer?
When PSA levels rise and tests and scans show prostate cancer in other parts of the body, such as the bones, this means the cancer has returned and is now metastatic prostate cancer. Fortunately, there are many treatments available today to help men with meta­static prostate cancer.

What can I do to ease my fears about my prostate cancer coming back?
♦ Accept your fears. It is common to experience some fear about your cancer recurring. Telling yourself not to worry or criticizing yourself for being afraid won’t make these feelings go away. Accept that you are going to experience some fear, and focus on finding ways to help yourself manage the anxiety.

It may also help to remember that the fear usually lessens over time, and that you won’t always feel so anxious. Be aware that your anxiety may temporarily increase at certain times, such as before follow-up care appointments, around the anniversary date of your diagnosis, or if a friend is diagnosed with cancer.

♦ Don’t worry alone. Talking about your fears and feelings, or writing down your thoughts in a journal, can help re­duce your anxiety. Talking and thinking about your concerns can help you ex­plore the issues underlying your fear. Fear of recurrence might include fear of having to repeat cancer treatment, losing control of your life, or facing death.

Many cancer survivors find joining a support group to be helpful. Support groups offer the chance to share feelings and fears with others who understand, as well as to exchange practical infor­mation and helpful suggestions.

♦ Adopt a healthy lifestyle. Eating a well-balanced diet, exercising regularly, and getting enough sleep helps you feel better physically and emotionally. Doc­tors do not know why cancer recurs in some people and not in others, but avoid­ing unhealthy habits, like smoking and excessive drinking, may help reduce the risk of recurrence. Adopting a healthy lifestyle will also lower your chances of developing other health problems.

♦ Reduce stress. Finding ways to lower your stress will help lower your overall level of anxiety. Experiment with differ­ent ways of reducing stress to find out what works best for you. Despite your best efforts to stay well, you may find yourself overwhelmed by fear or recur­rent thoughts of illness. If in doubt, talk with your doctor or nurse and consider a referral for counseling.

♦ ♦ ♦ ♦ ♦

Reprinted with permission from ZERO – The End of Prostate Cancer, zerocancer.org

This article was published in Coping® with Cancer magazine, September/October 2015.

Where Is That Silver Lining?

by Rosemary Bobay

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Six years ago, on the day before Thanksgiving, I got the call. You know which one I’m talking about. The one where the doctor says, “It’s cancer.” Invasive ductal carcinoma in my case.

Before my diagnosis, I often read about people who faced catastrophic life events like cancer and had their world changed forever – in a good way. “Cancer was a gift,” they’d say. Or, “If it weren’t for cancer, I wouldn’t have smelled that rose, or climbed that mountain, or become the fabulous new person I am today.”

I had always wondered whether you needed to go through something horrific to have that kind of epiphany. Now that I was facing my life-changing moment, I began to wonder, Where is that silver lining I’ve been reading about?

As I took my first baby steps into the frightening new world of surgeons, tests, scans, needles, and drugs with names I couldn’t pronounce, I was pumped up and ready to fight. I was in high gear, but I still hadn’t fully processed my new reality. I even told people that I wasn’t sick; I just had cancer.

I tried to focus on the silver lining as the tears rolled down my face. But I couldn’t find it.

Everyone has that pivotal moment that smacks you in the face and shakes you out of your denial when you’re in that stage of grieving, which I was in without knowing it. My moment came while I was standing in the middle of a wig shop.

Since my doctors said I would likely need the kind of chemotherapy that caused your hair to fall out, I wanted to get fitted for a wig while I still had my hair. When the wig fitter placed that little cap on my head to hold my hair down so the wig could be sized, I looked at myself in the mirror and started crying. Cancer was staring back at me. I saw what I would look like once chemo took my hair, and for the first time, my diagnosis sud­denly became real.

I tried to focus on the silver lining as the tears rolled down my face. But I couldn’t find it.

Five years have now passed. I’ve en­dured a double mastectomy, aggressive chemotherapy, radiation treatments, and numerous reconstructive surgeries. Some of the drugs (and, yes, the comfort foods I ate) caused me to gain over 40 pounds, and my fiancé, who did stay with me through my treatment, eventually left. Then, my older brother – my ardent sup­porter, protector, and caregiver – suddenly passed away. I had begun to think that perhaps that silver lining was not to be, at least not for me.

But one morning I woke up, in more ways than one, and my epiphany came to me in the form of an often over-used quotation about it not being the destina­tion, but rather the journey. And I realized the silver lining had been there all along.

I am alive, I am healthy, and I have a beautiful new head of hair. I have a loving extended family, loyal lifelong friends, and a wonderful younger brother, who is also an ardent supporter and care­giver. I have been given another chance; I’ve won the lottery of life. Now it’s up to me to choose how to live it – to see the silver lining.

♦ ♦ ♦ ♦ ♦

Rosemary Bobay is a breast cancer survivor living in Belmar, NJ.

This article was published in Coping® with Cancer magazine, September/October 2015.

Navigating the Journey after Cancer Treatment

by Tish Knobf, PhD, RN, FAAN, AOCN

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The end of cancer therapy is often a long awaited milestone that many cancer survivors joyously celebrate. However, your last day of treatment doesn’t signal the end of your cancer journey. No, the end of active therapy simply marks the start of a new voyage, one where you will traverse the uncharted path to survivor­ship. Here are some navigation tips to help you SURVIVE your first year after treatment.

Side effects
Most cancer survivors will continue to experience side effects after treatment ends. Fatigue is almost universal. It may take months before you feel like you have your energy back. You may also experience side effects that are unique to your cancer site and the type of treatment you received. Some persist; others resolve soon after treat­ment ends. Some may wax and wane. And new ones may even crop up unexpectedly. Talk with your doctor about how you can best manage the side effects and late effects of your treatment. And if these don’t improve satisfactorily, ask your doctor for additional coping strategies or palliative treatment options.

Uncertainty
After treatment ends, visits to healthcare providers de­crease and support from family and friends may begin to wane. You may feel pressure to get back to “normal,” or to how you were before cancer. This can lead to a lot of uncertainty surrounding this leg of the journey: How long will my side effects last? What can I do to get healthier? Why am I so emotional? How do I respond to my family who wants me to put this behind me when it’s still so new? Will I ever feel normal again? Just relax. It takes time to recover both physically and emotionally from cancer. And it is normal to have these questions. Talk with your friends and family mem­bers about how you are feeling, and let them know how they can help. If your feelings of uncertainty are interfering with your daily life, talk with your doc­tor or a counselor about what you can do to manage your anxiety.

The end of active therapy simply marks
the start of a new voyage.

Author of Article photo

Dr. Tish Knobf

Recurrence
Fear of recurrence is one of the most common concerns of cancer survivors. To help mitigate your fears, talk to your doctor about your risk for recurrence and work with him or her to develop a survivorship care plan that includes instructions for follow-up visits, as well as suggestions for positive lifestyle changes to reduce your risk of recurrence and improve your post-cancer health. However, keep in mind that even with a plan in place, there are certain situations that can trig­ger a surge in fears – follow-up visits, scans or tests, the appearance of un- explained symptoms. Let your doctor know if you are having trouble manag­ing your fear. He or she can point you to resources that can help.

Vitality
You are a cancer survivor. Take a moment to consider your strengths, and acknowledge your ability to overcome the challenges you may face during this phase of your cancer journey. If you feel your vitality waning, you can help restore it by eating well, getting adequate sleep, exercising, and seeking support.

Interpersonal relationships
The ad­age “No man is an island” is never more true than during the cancer jour­ney. This path you are navigating will be made easier by having companions walking alongside you, whether they be family, friends, or other survivors.

Voice
Good communication with your healthcare providers is crucial to a successful survivorship journey. Follow-up visits are often brief. Com­ing to your appointment prepared with specific questions and concerns you’d like to address will help you get the information you need. Don’t be afraid to speak up if something isn’t clear.

Exercise
Daily physical activity is recommended for nearly all adult cancer survivors. Exercise can improve your mood, help you sleep better, reduce fatigue, and combat depression. Mod­erate exercise can also reduce your risk of high blood pressure, cardiac disease, and diabetes. Even just walking as little as 20 minutes a day can help.

♦ ♦ ♦ ♦ ♦

Dr. Tish Knobf is a professor at the Yale University School of Nursing in West Haven, CT, where she is also chair of the Acute Care/Health Systems Division. Her clinical practice and program of research focuses on quality of life for women with breast cancer and interventions for those who transition into survivorship.

This article was published in Coping® with Cancer magazine, September/October 2015.

Balancing Cancer and Your Career as a Young Adult

by Rebecca V. Nellis, MPP

Photo by Cancer Type

No matter your age at diag­nosis, you’ll likely feel the impact of cancer in every corner of your life. However, for young adults, cancer poses unique challenges, especially when it comes to employment. Perhaps you had just begun the job hunt, or maybe you recently landed the posi­tion you were vying for or were starting to establish yourself professionally, finally feeling secure in your career path, when cancer hit. And now you’re left wondering what your next move should be. Will you need to take some time off or work fewer hours, or will you be able to maintain your current work schedule?

Determining Your Best Path Forward
The first step to figuring out what comes next is to think about where you are in your career, where you are in your can­cer journey, and what role your job plays in your life.

Next, you’ll need to do some fact finding. Talk with your healthcare team to ensure that you not only understand your diagnosis and treatment plan but also know how all of it could affect your work. Find out how much time off you should anticipate for surgery or treatment, discuss how treatment-related side effects might affect your job performance, and come up with solutions to help mitigate any issues they may cause.

Author of Article photo

Rebecca Nellis

Finally, find out what policies and benefits your employer already has in place for you. This information is often located in your employee handbook or your hiring paperwork. You’ll need to research what legal protections you’re entitled to as well. (Both federal and state laws may apply.)

Clinching Control with “the Swivel”
Regardless of whether you choose to continue working full time, decrease your workload, or take a medical leave, if your company is aware of your can­cer diagnosis, you may be concerned that the disease will dominate your interactions with coworkers. One way to regain control of your work identity is to learn how to constructively refocus conversations to a more productive topic. This technique is called “the swivel.”

Here’s how it works. If a coworker says, “My uncle had cancer too,” re­spond by validating the comment, and then swivel the conversation away from cancer and toward something work related. For instance, you could say, “Thank you for sharing that. It must have been hard for your family. Do you have time this week to go over our upcoming meeting?” By continuously steering conversations away from cancer and back toward work, you’ll reinforce how you want your colleagues to see you – as a coworker, not a cancer patient.

The swivel technique also comes in handy during job interviews. Although it’s illegal for employers to ask specifics about your health, an interviewer may inquire about a gap in your education or employment history. Go ahead and think about how you will answer these types of questions in advance. Be brief, speak in general terms, and talk more about the future than the past. The key to the swivel is to not leave an opening for the interviewer to dig further into the gap. Instead, you want to nudge them to pick up the conversation from where you have swiveled it.

Moving Past Your Worries
Along with concerns about your current or future employment, you may also be struggling with the idea of being left behind while your peers move for­ward, being a burden to your parents, or never having an identity that isn’t cancer-related. The best way to start moving past these worries is to begin a conversation – with your­self, your employer, your healthcare team, your family – so that whether you work during cancer treatment, take time off, or look for new opportunities, you’ll be empowered to take charge of your career, as well as your life.

♦ ♦ ♦ ♦ ♦

Rebecca Nellis is the chief mission officer for Cancer and Careers, a national nonprofit organization addressing the intersection of work and cancer. For more information, tools, and programs, visit CancerAndCareers.org.

This article was published in Coping® with Cancer magazine, May/June 2015.

Journaling through Cancer in the 21st Century

by Deborah Ludwig

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Marni visited me in the hospital during one of my admissions for chemo in the spring of 2004. I was bemoaning the difficulty of responding to all the emails I’d received from people who’d reached out to inquire about my health. She suggested I start a blog. I could write whenever I felt like it, posting health updates and giving my family and friends one central place to go for information.

“What a great idea!” I thought. I had never blogged before, but I had been journaling since 1992. For me, journal­ing was a way to record my life, work through challenges, set goals, and heal emotionally. Blogging was just a new way to journal.

How Writing Can Help
Did you know that expressive writing has health benefits? Research has shown that ex­pressive writing can strengthen the immune system, increase lung and liver function, improve cognitive function, reduce stress, lower blood pressure, boost your mood, decrease symptoms of arthritis and asthma, and increase well-being in cancer survivors.

It doesn’t matter if the topic of your writing is positive or negative; healing benefits are achieved as long as your emotions are involved. Though not a substitute for professional help, jour­naling can help you work through the difficult emotions that accompany a cancer diagnosis. It is a wonderful therapy tool for cancer survivors.

In our digitally connected world, a blog may be the preferred medium for today’s journal writers.

Author of Article photo

Deborah Ludwig

Getting Started
All you need to start writing is a journal, a notebook, or a computer. In our digitally connected world, a blog may be the preferred medium for today’s journal writers. A quick Google search for blogging platforms will provide some options – most of them free. There are even healthcare-specific blogging commu­nities, like CaringBridge.org and CarePages.com, where users can create their own personal websites to share health updates.

Most blogging platforms allow you to control the privacy of the posts you publish. For example, you can make your blog viewable only to people who have a password. And if you don’t want to share your writing, you can even change the privacy settings so that only you have access to your blog.

Going Social
If writing long blog posts isn’t really your thing, you can still “journal” your cancer experience using social media. Social media sites like Facebook, Twitter, and Instagram are a terrific way to provide quick updates to family and friends while simultaneously creating your story through photos and posts about your treatment, your feelings, and the chal­lenges you are facing.

As you post and share content, each social media site provides a record of your journey, dating all the way back to when you first started posting on the site. When you review past posts, you will make discoveries about your values, the patterns in your life, what drives you, where you have grown and healed, and where you remain stuck. What is revealed in those social media posts can be enlightening and, ulti­mately, healing.

Cancer can make your life feel out of control. But there are at least two things you can control during cancer: when you write and what you write. Writing can help transform your cancer experience into a journey of healing and self-awareness. And in the digital age we now live in, we have access to entirely new avenues for journaling. So pick up that pen – or log on – and start writing.

♦ ♦ ♦ ♦ ♦

Deborah Ludwig, a leukemia survivor, has completed 31 journals and is the author of Rebirth: A Leukemia Survivor’s Journal of Healing during Chemotherapy, Bone Marrow Transplant, and Recovery. To learn more about Deborah and her writing, visit DeborahLudwig.com.

This article was published in Coping® with Cancer magazine, September/October 2015.

Live the Life You Love

by Wade Brill

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Holy shit, I am a cancer survivor. Five years after my diagnosis, I am finally able to embrace those words.

Back in 2010 while studying abroad in Buenos Aires, Argentina, my life was rudely interrupted by a swollen lymph node on the right side of my neck. A biopsy, a bone marrow test, and various PET-CT scans later, I was diagnosed with Hodgkin lymphoma, and I anxiously embarked on a six-month chemotherapy course. Then barely two months in, I lost my mother – my everything – to leukemia, just two floors down from my infusion room.

It shook the ground beneath my feet. My heart sank. Nausea slithered through my bones, swirling with the precarious­ness of my own health. The uncertainty of where I was going to live, how I was going to pay for my healthcare, and who was going to take care of me was overwhelming. Everything around me was crumbling.

Then I realized that I could let this make me a victim, or I could take charge of my life. For me, life was no longer about just surviving. No, it was some­thing bigger. It was about living.

For me, life was no longer about just surviving.
No, it was something bigger.

Each day became a precious vehicle to express my true self. During treatment, I spent my energy and time exploring who I was and what I valued. I steered myself through darkness and uncer­tainty so that I could find light and beauty again.

I may not have been in control of everything that was happening inside my body, but I could control what I fed myself, what activities I consumed, how I interacted with others, and whom I spent time with. Every day, I made a conscious effort to engage my external world – asking the bus driver how his day was, spending time with friends who made me laugh, eating clean foods that made me feel strong, grounding myself in meditation and movement.

As cancer survivors, we possess a drive and a sense of urgency to accom­plish what we want. We know the value of our health, the importance of our time, and the preciousness of each breath. We no longer take for granted the days we feel healthy and strong because we have experienced what it feels like to have our bodies disobey and our minds pushed beyond discomfort.

We know that life is whatever we want it to be because we get to create our own narrative. We don’t have to be slaves to our desks or prisoners of unhealthy relationships. The power and strength to create the life we want lies within us. Our souls see nature’s true colors, the richness of fresh air, and life’s endless array of opportunities.

Living the life you love after the in­vasion of cancer requires looking inward and building a strong internal foundation. Let go of the assumptions you might hold about what it means to be a cancer survivor, and define survivorship for yourself. Spend time journaling, meditat­ing, moving, creating, and exploring who you are, what you value, where your pas­sions lie, and how your strengths shine.

Cancer, like many of life’s rude interruptions, can give you whiplash. But when you have built a resilient foundation, you can withstand sudden and harsh jolts. Don’t be afraid to ask the tough questions and to give consid­erate thought to why you are here, to the gifts you can share with the world.

Doing this for myself allowed me to follow my heart back to Buenos Aires, where I opened my own Pilates, meditation, and coaching practice, met the love of my life, and launched my career as a holistic life coach.

Life is beautiful. Let go of the sorrows of the past, ground yourself in your body and your spirit, hold gratitude for this moment, act with intention, and live.

Live the life you love.

♦ ♦ ♦ ♦ ♦

Wade Brill is a holistic life coach who helps clients mindfully make themselves a priority in their lives. She cofounded Centered in the City, an events collective grounded in self-development, community, and connection. She is also a Pilates and Barre instructor, a foodie, a mindfulness-based stress reduc­tion practitioner, and a Hodgkin lymphoma survivor.

For monthly tips from Wade to keep you breath­ing, staying balanced, and living brilliantly, you can sign up for her “Wade a Minute” newsletter at wadebrill.com.

This article was published in Coping® with Cancer magazine, September/October 2015.

Spiritual Care for Cancer Survivors

by Jamie Alexis Cohen, PsyD, and Rev. Susan P. Conrad, ACPE

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(© iStockphoto.com/stevecoleimages)

A cancer diagnosis changes your life. Suddenly, you may find yourself on shifting sands, unsure if your feet will ever land on solid ground. When faced with the un­certainty and fear that this diagnosis can bring, you may wonder, “In whom, and in what, can I trust?” You may suddenly feel vulnerable, searching for sources of meaning, faith, connection, and belonging. A cancer diagnosis may shift your relationship with spirituality.

Broadly defined, spirituality is a con­nection with something or someone beyond ourselves. The spiritual dimen­sion includes how we relate to others, to our surroundings, and, potentially, to a higher power. A recent University of California – San Francisco study by Shields, Kestenbaum, and Dunn (2014) defines spirituality as “the dimension of life that reflects the needs to seek mean­ing and direction, to find self-worth and to belong to a community, and to love and be loved.”

Your journey with cancer may deepen your spiritual connection. Or you may experience difficulty connecting with something beyond yourself. Both reac­tions are normal.

Tapping into your spirituality can boost your sense of well-being during this challenging time.

Author of Article photo

Dr. Jamie Cohen

However, research demonstrates that having a spiritual connection can enhance your coping skills and improve your quality of life during cancer treatment and recovery. While it is no substitute for traditional oncology care, tapping into your spirituality can boost your sense of well-being during this challenging time. It can ground you and help you find strength, hope, connection, and meaning in the midst of chaotic or painful experiences.

For some, spirituality includes reli­gious observances, community, and practices. For others, spiritual connec­tion comes from nature, or spending time with a beloved person or animal. Others connect by serving and giving back to the community.

You can connect with the spiritual dimension of life in many ways:

Seek support and cultivate relation­ships that provide a sense of energy, peace, and joy. This may include con­necting with friends, family, local clergy, a hospital chaplain, your com­munity, or your healthcare providers.

Figure out what makes you feel peace­ful, and do more of these activities. Try meditation or yoga. Spend some quiet time in a place of personal meaning or importance, such as a serene spot out­doors or in a house of worship, listening to your breath and to the sounds that surround you.

Author of Article photo

Rev. Susan Conrad

Explore the kind of reading you feel drawn to. This could include religious or spiritual texts, or even poetry.

Embrace or create a ritual, such as chanting, praying, reciting a personal mantra, journaling, or reflecting on what you are thankful for.

Consider the values you wish to embrace in caring for yourself and your meaningful relationships. Come up with a goal or plan for expressing these values in your daily life.

Treat yourself with compassion and patience, as you would treat someone dear to you.

Seek support as you explore new spiritual practices.

Advise your medical team of any spiritual or religious beliefs and prac­tices that you value so your team may respect them when creating your treat­ment and recovery plan and incorporate them in your care.

Be encouraged by knowing that there is no “right” way to connect with the spiritual dimension of life. It is a deeply personal journey. In this tender time, we encourage you to pay gentle attention to what matters most.

In closing, we offer this intention adapted from Buddhist spirituality:

May you be safe, may you be well, may you find moments of joy in the present moment. May you be free from undue suffering and find your­self held in love and care.

♦ ♦ ♦ ♦ ♦

Dr. Jamie Cohen serves as a clinical psychologist with the psycho-oncology service at the University of California – San Francisco Medical Center. The Rev. Susan P. Conrad serves as manager of spiritual care services at the UCSF Medical Center. She is a board-certified chaplain with the Association of Professional Chaplains, a certified supervisor with the Association for Clinical Pastoral Education, and an ordained and fellowshipped minister with the Unitarian Universalist Association.

This article was published in Coping® with Cancer magazine, July/August 2015.

Develop a Cancer Conqueror’s Mindset

by Lauren E. Miller

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When the doctors told me, at age 38 with three young children while going through a divorce, that I had a 50/50 chance of survival, I had no idea how strong my survival instinct was. In less than two years, I went through divorce, a double mas­tectomy, 16 chemotherapy treatments, an additional year of chemo, 6 weeks of daily radiation, and 12 surgeries.

I remember standing in the shower one day, bald and breastless, surveying the scars on my chest where my breasts used to be. “Wow, I am earning my PhD in suffering,” I pondered aloud. It was at that moment that I decided I would take the lessons I had learned (and am still learning) as a cancer con­queror to help others develop a cancer conqueror’s mindset. I realized that, rather than languishing in my situation feeling vulnerable and victimized, I could use my vulnerability to connect with others facing similar situations.

That’s the most important aspect of a cancer conqueror’s mindset – realizing that you have the ability to shift your perception of any situation. Once you do this, you open yourself up to oppor­tunities for growth and healing. After all, negative emotions are simply your body’s response to negative thoughts. And fear is just a label we place on a situation that we do not feel capable of handling.

Whenever a destructive thought enters your mind, hit the mental delete key as quickly as possible.

Guard Your Thoughts
One of your greatest tools for developing a cancer conqueror’s mindset is to remain vigilant at the gate of your thoughts. Whenever a destructive thought enters your mind, and you begin to feel spun emotionally, hit the mental delete key as quickly as possible. And replace that negative thought with a more positive one. For example, “I’ve overcome difficulties in the past, and I am confident that I can do it again.” The goal is to prevent external events from negatively affecting your mindset, caus­ing undue stress and worry.

Breathe Deeply
Practice deep breathing techniques every day. When we feel under attack, our breathing be­comes restricted, which limits oxygen flow to our body and brain. By devel­oping a daily habit of deep breathing exercise, these techniques will come naturally to you the next time you feel steamrolled by life. When this occurs, try this approach: Standing with your feet shoulder width apart, roll your shoulders up, back, around, and down, inhaling deeply as your shoulders lift and exhaling as they return to their original position. Repeat five times, or until you feel calm.

Surround Yourself with Positivity
My bathroom, kitchen, and office are filled with uplifting quotes. One of my favorites is this one from the author Bruce Barton: “Nothing splendid has ever been achieved except by those who dared to believe that something inside them was superior to circumstance.”

Choose Your View
Be a seeker of rainbows no matter what surrounds you, and you will see them appear in the most unlikely situations. Be present to the lessons and learning opportuni­ties around you, even in the midst of hardships like cancer. Use this unique challenge to reconnect to what you value most in this life. And no matter what life throws at you, choose to view it with a cancer conqueror’s mindset. For by your thoughts, you form your choices, and by your choices, you form your life. Choose wisely.

♦ ♦ ♦ ♦ ♦

Lauren Miller is an award winning author, international speaker, and managing partner of Grab & Go Stress Solutions. In addition to being a conqueror of two of life’s top stressors at the same time: advanced cancer and divorce. Lauren is a Certified Master Business Success Coach and holds her Master Certification in Neuro Linguistic Programming and Advanced Training in Emotionally Focused Therapy. She meets with clients and facilitates stress relief/ personal excellence workshops and semi­nars. She has worked in youth and adult ministries for 20 years. Her website is LaurenEMiller.com.

This article was published in Coping® with Cancer magazine, July/August 2015.

How to Build a Deeper Intimacy

Reconnect with Your Partner and Enhance Your Sexual Connection

by David Bullard, PhD

Wellness image

Whether we voice them or not, most of us at times have questions about how we can deepen the intimacy and sexuality of our closest relationships. Cancer survivors also can find it challenging to voice their need for deeper intimacy and share their concerns and feelings about resuming a sexual relationship after cancer.

Regardless of whether you are in an existing relationship or hoping to start a new one, it can be difficult to talk about what helps you feel closer to your partner, what you enjoy sexually, and what you miss about your intimate relationship before cancer. However, despite the intimacy challenges that a cancer diagnosis presents, many cancer survivors find that intimacy and sexual fulfillment are still possible after can­cer, though this may look different than it did before cancer entered the picture.

For example, some survivors find greater satisfaction in emotional inti­macy after cancer than in sexual activity. Others learn to expand their ideas of what sex is and discover a greater appreciation for all the intimate activities they can participate in and enjoy. Still others find that discuss­ing their fears and sexual limitations with their partners can lead to deeper conversations that inspire greater inti­macy and increased sexual pleasure.

Re-establishing intimate touch may feel a little awkward at first.
This awkwardness is perfectly normal.

Author of Article photo

Dr. David Bullard

There are several things couples can do to deepen their intimacy and enhance their sexual connection after cancer.

♦ Respect each other’s feelings. When you focus the conversation on how your partner’s actions or words make you feel (rather than on criticizing them or trying to change their behavior), it becomes easier to understand and empathize with one other. Your relation­ship should be a safe place where each of you is able to express your feelings without judgement.

♦ Remember that you are a sexual being. Regardless of whether you are sexually active, sexuality is part of who you are as a human being. Your sexuality is not defined by what you do, how often you do it, or with whom.

♦ Prioritize intimacy. Studies reveal that most married couples in the U.S. do not make as much time for sexual intimacy as they would like. And when your already-busy life has been dis­rupted by cancer, it can be even more difficult to find the time for intimacy. That’s why you need to make intimacy with your partner a priority. Set aside some time each day to share your feel­ings with your partner, instead of the usual rundown of your to-do list. Even just 15 minutes of intimate conversation can make a difference.

♦ Embrace the awkwardness. Reestablishing intimate touch may feel a little awkward at first after the inter­ruption of cancer and its treatments. This awkwardness is perfectly normal. Instead of looking at it as a problem, embrace it. Remember to laugh, be patient with each other, and keep practicing intimacy. Eventually the awkwardness will subside.

♦ Get to the root of your relationship distress. If you feel irritation, annoy­ance, or frustration toward your partner, these feelings may actually be symptoms of deeper, more painful emotions. It’s important to get to the root of what is causing your annoyance or irritation. When you identify and acknowledge the pain, sadness, or fear beneath the surface, you will be better able to resolve the relationship distress that results from it.

♦ Take your partner’s feelings seriously, but not personally. When your partner is upset or frustrated, try not to react defensively. Instead, hear them out, acknowledge their feelings, and ask how you can help resolve the situation.

♦ Choose being kind over being right. When conflict occurs, accept your part of the responsibility rather than engag­ing in faultfinding.

♦ Hold on to love. Remember, sex can be part of love, but love is not sex. We are loved for who we are.

♦ Find simple ways to reconnect. In a relationship, it is important to feel safe, cared for, and deeply understood. During difficult or uncertain times, find simple ways to reconnect with your partner – a gentle touch on the shoulder, a caring smile, a hug, or comforting words.

♦ Ask for help if you need it. If you are struggling with intimacy or sexual difficulties after cancer, don’t be afraid to ask for help. Talk to your doctor about your concerns. He or she can answer your questions, refer you to a specialist, and help you find solutions.

♦ ♦ ♦ ♦ ♦

Dr. David Bullard is a clinical professor of medicine and medical psychology (psychiatry) at the University of California, San Fran­cisco, where he consults with Spiritual Care Services, as well as the Symptom Management Service at the Helen Diller Family Comprehensive Cancer Center.

This article was published in Coping® with Cancer magazine, July/August 2015.

Real Housewife and Endometrial Cancer Survivor Camille Grammer

Wants All Women to “Love Your Lady Parts”

 

Photo by Cancer Type

Camille Grammer, best known for her role as a “housewife” on the Bravo reality series Real Housewives of Beverly Hills, is a third-generation gynecologic cancer survivor. Her grandmother had endometrial cancer; her mother was diagnosed with ovarian cancer at 47 and is now fight­ing colon cancer; and she is a one-year survivor of endometrial cancer. Now, she is on a crusade to raise awareness about gynecologic cancers by encour­aging all women to “Love Your Lady Parts.” Here, she shares her story with Coping magazine.

How were you diagnosed with endometrial cancer?
My grandmother and mother both had gynecologic cancers, so I had genetic testing done and tested positive for Lynch Syndrome when I was 35. Be­cause of that, and unlike many women, I was familiar with the symptoms and had regular checkups every year – sometimes twice a year. Yet I was still caught off guard by my diagnosis of stage II clear cell carcinoma, an agres­sive form of endometrial cancer. My doctors had recommended I have a full hysterectomy at 35, but I wasn’t psychologically ready for that at the time. I waited several more years, and in retrospect, I waited too long.

What did your treatment involve?
My treatment included a radical hyster­ectomy, as well as chemo and radiation, which was done concurrently over a seven-week period – a grueling regimen. While I was undergoing treatment, I said over and over to my doctor, my nurses, and other caregivers, “We have to get the word out about these cancers. No one is talking about them, and that needs to change!”

“We have to get the word out about these cancers. No one is talking about them, and that needs to change!”

What were some of the biggest struggles you faced as a mother going through cancer?
As a mother, the first thing you think of when you’re diagnosed with cancer is, “Am I going to be around to raise my children?” I knew that I had to conquer cancer for my children so I could see them graduate high school and get mar­ried. Not being there for them was my biggest worry.

How do you continue the battle even after your cancer treatment?
It’s a continuing healing process. The radiation side effects seem to stick with you, so even now, more than a year after I’ve finished radiation, I’m still trying to get my strength back. My body has changed. I’ve been paying attention to my diet, hiking, playing tennis, and trying to get my body back to where it was. It’s definitely a life changer, but I will continue to strive for my kids and my mother, who is still battling cancer.

Do you have any advice for other women going through cancer?
My advice to other women is to stay strong and hang in there. Be strong for your children and keep a positive attitude, even though it’s difficult. Pray or meditate, or do whatever you believe in. Keep your support team around you. I had a lot of support, and that’s very important.

What’s next for you?
I have been in the public eye as a Real Housewife for several years, but most of my fans don’t know that I’ve also been a longtime advocate for gynecologic cancer awareness, due to my family’s health history. Currently, I am honored and excited to serve as a national spokes­person for the Foundation for Women’s Cancer, as well as chair of the 2015 National Race to End Women’s Cancer. I consider this one of the most impor­tant roles of my life.

The Foundation wants people to think outside the bra – because we have other lady parts and we need to talk about them! I want my own daughter, and all our daughters, to grow up in a world where we have defeated these below-the-belt cancers that claim far too many lives.

It’s time to “Love Your Lady Parts!” We want all women to learn the symp­toms, listen to their bodies, and seek care from a gynecologic oncologist for the best outcomes. That is the Foundation’s key message, and I am proud to share it and help raise aware­ness and research funding to save more women’s lives.

♦ ♦ ♦ ♦ ♦

Learn more about the Foundation for Women’s Cancer and its mission to raise awareness and research funding to defeat gynecologic cancers at FoundationForWomensCancer.org. For more on the 2015 National Race to End Women’s Cancer, visit EndWomensCancer.org.

This article was published in Coping® with Cancer magazine, September/October 2015.

Know Your Multiple Myeloma Treatment Options

 

Photo by Cancer Type

While there is no cure for mul­tiple myeloma, the cancer can be managed successfully for years in many people. Your multiple my­eloma treatment will depend on whether you are experiencing symptoms and your overall health. In many cases, a team of doctors will work with you to determine the best treatment plan. The goals of treatment are to eliminate myeloma cells, control tumor growth, control pain, and allow you to have an active life.

Your care plan may also include treatment for symptoms and side effects, an important part of cancer care. Take time to learn about all of your treatment options, including clinical trials, and be sure to ask questions about anything that is unclear. Also, talk to you doctor about the goals of each treatment and about what you can expect while re­ceiving the treatment.

Active Surveillance for People without Symptoms
People with early-stage myeloma and no symptoms, called smoldering myeloma, may simply be closely monitored by their doctor through check-ups. This approach is called ac­tive surveillance or watchful waiting. If symptoms appear, then active treat­ment starts.

Treatment Options for People with Symptoms
Treatment for people with symptomatic myeloma includes both treatment for the disease and support­ive therapy to improve quality of life, such as by relieving symptoms and maintaining good nutrition. Disease-directed treatment typically includes drug therapy, such as targeted therapy or chemotherapy, with or without steroids. Stem cell transplantation may also be an option. Other types of treatments, such as radiation therapy and surgery, are used in specific circumstances. Each type of treatment is described below:

♦ Targeted Therapies
Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treat­ment blocks the growth and spread of cancer cells while limiting damage to healthy cells. Targeted therapy has proven in recent years to be quite suc­cessful at controlling myeloma, and researchers continue to investigate new and evolving drugs for this disease in clinical trials.

Recent studies show that not all tumors have the same targets. To find the most effective treatment, your doctor may run tests on cancer cells to identify genes, proteins, and other factors. This helps doctors better match each person with the most effective treatment when­ever possible.

Targeted therapy has proven in recent years to be quite successful at controlling myeloma, and researchers continue to investigate new and evolving drugs for this disease in clinical trials.

Lenalidomide (Revlimid), pomalid­omide (Pomalyst), and thalidomide (Synovir, Thalomid) are drugs that stop the growth of myeloma cells in the bone marrow. These drugs strengthen the im­mune cells to attack cancer cells. They starve the cancer cells by blocking new blood vessel formation, a process called angiogenesis.

Bortezomib (Velcade) and carfilzomib (Kyprolis) are classified as proteasome inhibitors. They target specific enzymes called proteasomes that digest proteins in the cells. Because myeloma cells produce a lot of proteins, they are particularly vulner­able to this type of drug.

Panobinostat (Farydak) is an inhibi­tor of the enzyme Histone Deacetylase (HDAC). These enzymes help keep the DNA tightly coiled, while panobinostat helps uncoil the DNA and activate genes that arrest the growth of cancer cells.

Thalidomide, lenalidomide, and bort­ezomib may be used to treat those who are newly diagnosed, while lenalidomide, pomalidomide, bortezomib, carfilzomib, and panobinostat are effective for treat­ing recurrent myeloma. Targeted therapies may also be used in combination with chemotherapy or steroid medications, as certain combinations of drugs can some­times have a better effect than a single drug. For example, the drugs lenalido­mide, bortezomib, and dexamethasone, as well as bortezomib, cyclophospha­mide, and dexamethasone, are offered in combination.

Clinical trials are underway to explore whether the combination of lenalidomide, bortezomib, and dexa­methasone alone may be as effective as lenalidomide, bortezomib, and dexamethasone followed by stem cell transplant. Also, targeted therapy can be effectively used before or after a stem cell transplant. However, the decision to undergo a stem cell transplant is com­plex and should be discussed carefully with your doctor.

Research has shown that maintenance therapy (the ongoing use of a drug) with lenalidomide extends patients’ survival time and extends the time they live without active myeloma. However, maintenance therapy has to be used with caution. In addition, many research studies are taking place now to find out more about specific molecular targets and new treatments directed at them.

♦ Chemotherapy
Chemotherapy drugs that have been used successfully for the treatment of myeloma include cyclophosphamide (Cytoxan, Neosar), doxorubicin (Adriamycin, Doxil), mel­phalan (Alkeran), etoposide (Toposar, VePesid), cisplatin (Platinol), and carmustine (BiCNU).

Often, more than one drug is used at a time. It may also be recommended to combine chemotherapy with other types of treatment, including targeted therapies or steroids. For instance, the combination of melphalan, the steroid prednisone, and the targeted therapy bort­ezomib is approved by the U.S. Food and Drug Administration for the initial treatment of multiple myeloma because it increases survival when compared with melphalan and prednisone. A person may also be given a combination of melphalan, prednisone, and thalido­mide. Additional combinations of drugs are being evaluated in clinical trials.

The length of chemotherapy treat­ment varies from person to person and is usually given until the myeloma is well controlled.

♦ Other Drug Therapy
Steroids, such as prednisone and dexamethasone, may be given alone or at the same time as other drug therapy, such as targeted therapy or chemotherapy. For example, lenalid­omide (Revlimid) and dexamethasone as induction and maintenance therapy is recommended for those who are not able to have a stem cell transplantation. In addition, most people with myeloma receive monthly infusions of bisphospho­nate therapy, which are drugs that help to prevent bone disease from myeloma.

♦ Stem Cell Transplantation
A stem cell transplant is a medical procedure in which bone marrow that contains cancer is replaced by highly specialized cells, called hematopoietic stem cells, that develop into healthy red blood cells, white blood cells, and platelets in the bone marrow. Hematopoietic stem cells are blood-forming cells found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a stem cell transplant, rather than bone marrow transplant, because it is the stem cells in the blood that are typi­cally being transplanted, not the actual bone marrow tissue.

There are two types of stem cell transplantation: allogeneic (ALLO) and autologous (AUTO). ALLO uses donated stem cells, while AUTO uses the patient’s own stem cells. For multiple myeloma, AUTO is more commonly used. ALLO is being stud­ied in clinical trials.

In both types, the goal is to destroy all of the cancer cells in the marrow, blood, and other parts of the body using high doses of chemotherapy and/or radiation therapy and then allow replace­ment blood stem cells to create healthy bone marrow.

♦ Radiation Therapy
Doctors may recommend radiation therapy for people with bone pain when chemotherapy is not effective or as a way to control pain. However, the use of radiation therapy should be a careful decision. In many instances, pain (especially back pain) is due to structural damage to the bone. Radiation therapy will not help this type of pain and may compromise the bone marrow’s response to future treatment.

♦ Surgery
While not a disease-directed treatment option for multiple myeloma, surgery may be used to relieve symptoms.

Getting Care for Symptoms and Side Effects
Cancer and its treatment often cause symptoms and side effects. In addition to treatment to slow, stop, or eliminate the cancer, an important part of cancer care is relieving a per­son’s symptoms and side effects. This approach is called palliative or support­ive care, and it includes supporting a person’s physical, emotional, and social needs. Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support, and other therapies.

You may also receive palliative treat­ments similar to those meant to eliminate the cancer, such as chemotherapy, sur­gery, or radiation therapy. For example, surgery may be used to relieve pressure from a plasmacytoma on the spine or other organs. More recently, procedures such as kyphoplasty and vertebroplasty have been considered to relieve pain, restore lost height due to collapsing vertebra, and strengthen the spine.

Before treatment begins, talk with your healthcare team about the possible side effects of your specific treatment plan and palliative care options. And during and after treatment, be sure to tell your doctor or another healthcare team member if you are experiencing a problem so it can be addressed as quickly as possible.

Refractory Myeloma
If your myeloma no longer responds to treatment, this is called refractory myeloma. People with this diagnosis are encouraged to talk with doctors who are experienced in treating this stage of cancer because there can be different opinions about the best treatment plan. You may also want to get a second opinion before starting treatment so you are comfort­able with the treatment plan chosen. For people with refractory myeloma, palliative care to reduce symptoms and side effects is also very important.

Remission and the Chance of Recurrence
A remission is when cancer cannot be detected in the body and there are no symptoms. A remis­sion may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. While many remissions are permanent, it’s important to talk with your doctor about the possibility of the cancer re­turning. Understanding your risk of recurrence and the treatment options may help you feel more prepared if the cancer does return.

If the cancer does return after the original treatment, it is called recurrent myeloma or relapsed myeloma. When this happens, a cycle of testing will be­gin again to learn as much as possible about the recurrence. After testing is done, you and your doctor will talk about your treatment options. Often, the treatment plan will include the treatments described above (such as targeted therapy and chemo­therapy), but they may be used in a different combination or given at a different pace.

Your doctor may also suggest clinical trials that are studying new ways to treat recurrent/relapsed myeloma. There are several drugs currently being researched in the late stages of clinical trials that have shown promise as treatments for recurrent myeloma. Whichever treat­ment plan you choose, palliative care will be important for relieving symptoms and side effects.

♦ ♦ ♦ ♦ ♦

This article is based on content from Cancer.Net®. Copyright 2015. All rights reserved.

This article was published in Coping® with Cancer magazine, September/October 2015.

Coping® does not endorse or recommend any particular treatment protocol for readers, and this article does not necessarily include information on all available treatments. Articles are written to enlighten and motivate readers to discuss the issues with their physicians. Coping believes readers should determine the best treatment protocol based on physicians’ recommendations and their own needs, assessments and desires.

I Survived Cancer

Why Do I Feel So Guilty?

by Kimarie Knowles, LCSW-R

Wellness image

Survivor guilt is common among survivors of traumatic events – such as war, natural disasters, epidemics, and illnesses like cancer. Survivor guilt is a deep sense of guilt felt by people who have survived an experience that others did not.

Questioning Your Existence
If you have survivor guilt, you may begin to question the meaning of your experience. Those nagging “Why me?” questions that surface when you are first diagnosed often begin to morph into questions such as “Why did I survive when others did not?” or “Why have others had a more difficult experience than I have?” as you move through active treatment and into survivorship.

You may begin to feel as if there needs to be greater meaning and purpose in your life to justify your existence since you survived when others did not. You may also start having judgments about what you think you “should” be doing, thinking, feeling, saying, or believing.

While it is true that some survivors make changes in their lives that lead to greater purpose and meaning, most survivors just want to return to the life they had prior to cancer. Not everyone has a grand epiphany or is driven to make major life changes after surviving cancer. How­ever, the notion that because you were diagnosed with cancer you “should” be doing something different or “better” may still linger, and can lead to feelings of survivor guilt.

Confronting Your Notions of Fairness and Equity
Most people would like to believe that life is fair and equitable. But we know that cancer does not work this way. It is unfair that some people die from their disease while others sur­vive. And no one experiences cancer equally; some people do have a more traumatic experience than others do. For those survivors who believe they had “better luck” for no apparent reason, feelings of survivor guilt can emerge.

You may begin to feel as if there needs to be greater meaning and purpose in your life to justify your existence since you survived when others did not.

Author of Article photo

Kimarie Knowles

Another commonly held notion of fairness and equity is the erroneous belief that for you to experience fortune, someone else must experience misfortune. Without recognizing it, you may unconsciously believe that there are only a certain number of people allowed to survive, and if you survive, then that means someone else doesn’t. However, the reality is that your survival has no bearing on anyone else’s, and vice versa.

Experiencing Conflicting Feelings
After surviving cancer, you may feel relieved and grateful to be alive. How­ever, these feelings often conflict with the great sense of sadness and grief you likely experience when someone around you succumbs to the disease. Moreover, you may still feel anger and grief over the personal losses brought on by your own cancer experience, resulting in an internal conflict of emotions.

You are entitled to all the emotions you may be experiencing – happiness, sadness, relief, anger, gratitude, and grief. Conflicting emotions do not cancel each other out. You can be grateful and happy to be alive while also feeling anger and grief over cancer’s devastating effects. However, it can be difficult to balance all these conflicting emotions, and this can lead to feelings of survivor guilt.

Avoiding Difficult Emotions
Survi­vor guilt can be a way of avoiding other difficult emotions. Being diagnosed with cancer can expose you to a world where you witness and experience pain and suffering. Confronting your own mortality, experiencing loss and trauma, and losing fellow survivors to cancer can bring up intense feelings of grief, sadness, and helplessness. When faced with this, guilt is one emotion that can help you feel in control. Survivor guilt can actually mask emotions such as grief, sadness, and helplessness, preventing you from fully experiencing – and learning how to manage – these diffi­cult emotions.

Overcoming Survivor Guilt
The first step to overcoming survivor guilt is to acknowledge it and try to uncover the underlying causes that may be responsible for your feelings of guilt. If you are experiencing survivor guilt, remember that you are not alone. Connecting with other survivors and sharing your experiences can help you manage your feelings of guilt, as can talking with a nonjudgmental listener, such as an oncology social worker or a therapist who specializes in working with cancer survivors.

Give yourself space to grieve your losses – whether the loss of fellow sur­vivors or your own personal losses. Find ways to honor your own experience, as well as the experiences of others. And always, always remember that you are not responsible for another person’s survival. When loss occurs, cancer is the only guilty party. Don’t let survivor guilt keep you from living your life. You survived cancer; you deserve to enjoy it.

♦ ♦ ♦ ♦ ♦

Kimarie Knowles is a clinical social worker at Memorial Sloan Kettering Cancer Center in New York, NY, with special training in cancer survivorship, bereavement issues, and group psychotherapy.

This article was published in Coping® with Cancer magazine, September/October 2015.

The Waiting Room

by Lisa Pawlak

Inspiration image

While I am sitting in the oncol­ogy waiting room, I often wonder what I am doing here. I pass the time by flipping through magazines, browsing the web on my smartphone, and sending text messages to my husband. Often, I complain that I am still waiting.

I glance around the room at the others. Today, an elderly couple stands by the registration desk. The frail- looking woman leans on her bony husband who, in turn, is leaning on a wooden cane. I wonder which one is the patient. Another older lady in a wheelchair, afghan tucked around her lap, is nodding off as her daughter fusses over her, stroking her hand and smoothing her hair. A middle-aged woman, with a scarf wrapped around her hairless head and her missing eye­brows meticulously penciled in, sits across from me reading a novel. She deftly avoids eye contact, though probably senses me staring.

The minutes slowly tick by.

I wonder who is newly diagnosed. And who is in remission. I wonder if any of them are about to discover a recurrence. Or if anyone is dying. I wonder what type of cancer they all have.

I wonder if any of them are wondering why I am here, since – I assure myself – I am much too young, I look way too healthy, and I am far too stub­born for it to ever come back.

The minutes slowly tick by. I wonder who is newly diagnosed.
And who is in remission.

Although I don’t doubt that my husband, or a friend, would come with me if I asked, I have always preferred to go to the oncologist alone. I don’t want anyone to see me here, because that would make everything more real. Although I go in regularly for my rec­ommended check-ups, lab work, and various scans, I generally like to pre­tend that I am not a cancer patient. I just don’t think of myself that way.

I certainly don’t want anyone else to think of me that way, either.

What am I waiting for, anyway? To talk to my doctor, to have him listen to my lungs, to go over my latest test results? Am I waiting for the day when he tells me there is another “something” to monitor? To biopsy? To surgically remove? To attack with chemotherapy? To radiate? And, if that day comes, will I freeze up in shock? Will I burst out in tears? Will I run screaming out the door? Or will I simply sit there, calmly, and discuss my options with him?

What a crazy thing to sit around and wait for. So I wonder, again, what I am doing here, here in this waiting room. I don’t belong here; I am sure of that. Yet despite the conviction that I have been misplaced, that I am not actually a cancer patient, and that none of this could have actually happened to me, there is no denying it when the cheerful nurse pops her head out and loudly calls my name.

“Yes, I’m right here,” I say. And this is true.

Suddenly, intensely, I am filled with hope. I hope that I am still waiting here when I am a frail old lady, leaning on my husband – and maybe even on his cane – for support. I hope that one or both of my kids will fuss over me, strok­ing my hand and smoothing my hair. I even hope, if I should ever have a hair­less head and missing eyebrows, that I will quietly allow someone to openly stare at these battle scars, recognizing that they are a source of pride and survivorship.

We are survivors here, in the wait­ing room. We have scars, some visible and some hidden, but we are all still here – sitting, standing, reading, tex­ting, staring, complaining, wondering, waiting, living.

I put my magazine down, and my phone away. I breathe in deeply and slowly – because, stubborn as I am, I don’t actually know what is coming my way.

I follow the nurse through the door. I hope that I will feel just as out of place during future visits to the oncologist. I hope that my primary complaint to my doctor continues to be about the waiting.

♦ ♦ ♦ ♦ ♦

Lisa Pawlak is a carcinoid lung cancer survivor living in Encinitas, CA.

This article was published in Coping® with Cancer magazine, September/October 2015.

Get Help for Speech and Swallowing Difficulties after Head and Neck Cancer

by Mary J. Bacon, MA, CCC-SLP, BCS-S

A diagnosis of head and neck can­cer often raises concerns about speech clarity, voice quality, and swallowing ability. The degree to which a person’s speech and swallowing func­tions are affected varies depending on the type, size, and location of the tumor and the method used to treat it. Some people glide through treatment with little difficulty, while others experience impairment that is more extensive.

What Are the Potential Complica­tions?
Base-of-tongue and throat (pharynx) tumors can hinder swallow­ing. Cancer of the voice box (larynx) has the potential to instigate voice changes as well as swallowing issues. Surgical removal of the larynx (laryngectomy) is sometimes necessary and requires voice restoration therapy afterward. Surgery involving the lips or tongue can cause changes in articulation and can affect the oral stage of swallowing. Nasal re­gurgitation when eating or drinking is a concern after treatment for tumors on the roof of the mouth, as are changes in nasal resonance during speech.

Non-surgical treatments can also cause problems. Radiation therapy directed at the head and neck area can produce both short-term and long-term changes in speech and swallowing function. The effects of chemotherapy on speech and swallowing tend to be short term; nonetheless, these changes deserve attention during cancer treat­ment as well.

What Can You Do about Them?
Regardless of your level of impairment, a speech pathologist can be tremen­dously helpful in managing the side effects of head and neck cancer and its treatment.

Difficulty Swallowing If you’re having difficulty moving food and liq­uid through your mouth to your throat, a speech pathologist will need to ob­serve the swallowing process. This is done by viewing a moving-picture X-ray (videofluoroscopy) or by introducing a small flexible telescope through your nose, allowing a view of the swallow­ing process from above.

Author of Article photo

Mary Bacon

After the swallowing evaluation, the speech pathologist can recommend strategies to help you swallow food and liquids so that they go down the right way or exercises to maximize the strength and range of motion of your swallowing structures.

Other professionals can help too. For instance, dietitians can give you advice on how to get the nutrition you need when swallowing is difficult. Dentists can help you maintain good oral hygiene, which is important when a threat of aspiration (food or liquid going into the airway) exists. If dry mouth is making swallowing difficult, you can turn to your speech pathologist, dentist, or nurse, each of whom can provide sug­gestions for relief.

Speech and Voice Quality Treatment directed toward your tongue or lips can affect speech clarity. A speech patholo­gist can suggest strategies to help you speak more clearly or provide therapy to help you improve specific sounds that you may be struggling with. In rare situ­ations, you may have to consider using an alternative communication mecha­nism, such as a computer-generated speech device.

If your soft or hard palate (roof of the mouth) has been affected, your speech pathologist may need to enlist the assistance of a specialized dentist who can fashion a prosthesis to separate the oral and nasal cavities.

If you have a laryngeal tumor, your voice, as well as your swallowing func­tion, may be compromised. If you do experience voice changes, your speech pathologist can offer therapy to help you maintain functional voice quality. If total laryngectomy is required, your speech pathologist will offer training with an artificial larynx device (often called an electrolarynx), esophageal speech, or tracheo-esophageal speech.

Knowing that speech, voice, and swallowing problems can result from head and neck can­cer, you should schedule a visit with a speech pathologist before beginning treat­ment if possible. Your speech path- ologist, along with the other members of your healthcare team, will work with you to help to ensure your best possible treatment outcome.

♦ ♦ ♦ ♦ ♦

Mary J. Bacon is associate professor emerita of communication disorders and sciences at Rush University in Chicago, IL. With more than 30 years of experience working with head and neck cancer survivors, she holds the Certificate of Clinical Competence from the American Speech-Language Hearing Association and is board certified in swal­lowing and swallowing disorders.

For more information on coping with head and neck cancer, Mary recommends visiting spohnc.org, webwhispers.org, asha.org, and swallowingdisorders.org.

This article was published in Coping® with Cancer magazine, March/April 2015.

Healing Your Spirit

by Kava Schafer, MDIV, MA

Inspiration image

Every day in my work as a hospital chaplain I meet with people who are living with cancer in ways that inspire me. Many of these folks tell me they cultivate spiritual well-being, even while dealing with a serious diagnosis or while facing treatment challenges. And yet, it is not at all unusual for these situations to bring survivors and their families to the existential brink. Every­thing of value and importance may feel under threat as uncertainty grows. Even with a positive attitude and good progress, something will feel lost. There are many responses to this sense of rupture between life before cancer and life with cancer.

From my vantage point, I see that crisis brings opportunity for self- reflection. As human beings we seem to have this innate capacity to craft new meaning when faced with adversity. One way we do that is through a pro­cess of questioning and evaluating what is happening to us. Through that process, we may find that what once sustained and supported life may actu­ally deepen through the experience of illness. There is also the potential that our system of meaning or values may not prove sufficiently elastic to create safety or lead to ways to cope and move in life-enhancing ways through the experience of cancer.

Everything of value and importance may feel under threat.

Author of Article photo

Kava Schafer

It is human to question and wonder why illness comes, but if the questions oppress and strangle the spirit, spiritual distress may appear. When recognized and attended to, spiritual struggle may lead to new transformational spiritual insights and healing. In fact, it often does, but if it is ignored, it has the power to poison the spirit and create obstacles to healing. It is such a potent force that spiritual pain may actually make it difficult to manage physical pain effectively.

This is not difficult to understand since, for many, spirituality is the uni­fying core of our being; it is that which animates us, gives our lives meaning, and fuels our aspirations. It is not mea­surable, but it is the elusive factor that fosters resiliency in the experiences of change. Many people express their spirituality through religious beliefs and practices, but there are countless others who express their spirituality in non-religious ways through family, communion with nature, art, or service to others, to name a few. Living with cancer requires the capacity to draw on every available resource, and if one’s spiritual wholeness is fractured, it makes sense that depression or in­creased anxiety might be among the resulting symptoms.

In my experience, it is not unusual for people to admit that events from the past resurface and cause them to reflect on a possible connection be­tween the past and their cancer. These responses might be related to religious beliefs that carry additional weighted responsibility.

As a chaplain, I frequently hear people wonder if they are being pun­ished for past mistakes. Why has a loving God let this happen to me? Was there something I did that needs forgiveness? Perhaps a past regretted action or omission has come back to haunt me, even if it has been con­fessed to and forgiven. Religious representatives may have offered absolution, but it is often harder to forgive ourselves.

As the person struggles privately with these thoughts, increased sleep­lessness, reduced hope for the future, anxiety, and emotional flatness aren’t unusual. If that is not complicated enough, anger at God might be under the surface. Take any one of these possibilities, partner it with shame and guilt, and it becomes easier to see why much of this remains hidden.

Cancer is difficult enough without these complications. If you or someone you love is carrying guilt, laboring under a sense of punishment, or strug­gling angrily and despairingly with their religious faith, I encourage you or your loved one to seek the help of a religious or spiritual specialist who is skilled and compassionate. Delicacy may require that the person of choice be someone outside of your current frame of reference. The core advice is to seek companionship from someone trustworthy and knowledgeable. This language implies a Chris­tian religious perspective, but spiritual distress occurs in other religious frameworks, and just as frequently occurs in people who are non-religious. No one is immune from spiritual distress and no one should struggle alone without hope of spiritual healing.

♦ ♦ ♦ ♦ ♦

Kava Schafer is a certified spiritual director and palliative care chaplain at University of Pennsylvania Health System in Philadelphia, PA.

This article was published in Coping® with Cancer magazine, May/June 2015.

Coping with the Cognitive Side Effects
of Cancer

by Jeffrey S. Wefel, PhD, ABPP, and Mariana E. Bradshaw, PhD, ABPP

Knowledge image

Among the possible side effects of cancer, many survivors report changes in their thinking skills during and after treatment. The severity of these changes varies by person and can include memory problems; difficulty with concentrating, multitasking, and word finding; and slowed thinking. This cancer-related cognitive impairment is often referred to as chemo brain.

Causes
Chemo brain can result from cancer treatment (such as chemotherapy, surgery, radiation, or hormonal therapy), or it may be a side effect of the cancer itself. Additional factors like low blood counts, certain medications, and mood disturbances (such as anxiety or depres­sion) can also contribute to chemo brain.

For most people, cognitive issues generally fade soon after cancer treat­ment ends. However, for some, it may take a year or more to feel normal again, and even then, some survivors may never regain full cognitive function. Fortunately, with the right tools, you can reduce the impact chemo brain has on your daily functioning in order to improve your quality of life.

Behavioral Strategies
You can maximize your cognitive function by making some simple lifestyle changes and by using organizational tools and memory aids:

  • Rather than trying to multitask, you should prioritize your to-do list, mini­mize distractions, and focus on one task at a time.
  • Designate a station where you can store your keys, your cell phone, and other important items to avoid the frustration of having to search for mis­placed possessions.
  • Keep track of important information and upcoming appointments using your smartphone, a day planner, or a calendar.
  • Use your phone, alarm clock, or kitchen timer to set audible reminders for important tasks and appointments.
Author of Article photo

Dr. Jeffrey Wefel

In addition to these compensatory strategies, it’s equally important for you to manage the factors that might be worsening your chemo brain:

  • Follow a healthy diet.
  • Get plenty of rest, and practice good sleep hygiene.
  • Regularly exercise your brain and your body. Physical activity can help combat fatigue and improve mood, while memory and thinking exercises can help improve cognitive functioning.
  • Practice relaxation strategies to help reduce stress.
  • If you’re experiencing symptoms of depression or anxiety, let your doctor know so you can discuss your options for treatment.

Author of Article photo Dr. Mariana Bradshaw

Cognitive Training
Numerous prom­ising cognitive training approaches are available to help enhance cancer survivors’ brain function. For example, hospital-based education and cognitive remediation programs have been success­ful in ensuring academic development and improving attention span for children undergoing cancer treatment. Likewise, home-based, computerized cognitive training programs can help improve memory and executive functioning in both children and adults. Talk with your doctor about your cognitive training options.

Advances in cancer management have resulted in an increasing number of cancer survivors, some of whom must cope with cancer-related cognitive side effects. Fortunately, the impact of these side effects on daily functioning and quality of life can be minimized with appropriate interventions, more of which may be on the way, as efforts are underway to discover medications that may be helpful in enhancing brain function in cancer survivors.

If you’re currently experiencing chemo brain, you may want to ask for a referral for a neuropsychological assess­ment. This assessment can identify your cognitive strengths and weaknesses and help guide a more personalized plan to manage your chemo brain symptoms.

♦ ♦ ♦ ♦ ♦

Dr. Wefel and Dr. Bradshaw are board-certified neuropsychologists at the University of Texas MD Anderson Cancer Center in Houston, TX. Their practice focuses on the neuropsychological effects of cancer and cancer therapy in adult cancer survivors.

To find a board-certified neuropsychologist in your area, visit theaacn.org.

This article was published in Coping® with Cancer magazine, July/August 2015.

On the Job Hunt after Cancer

Expert Tips for Job Search Success

by Julie Jansen

About Coping

A recent Harris Poll survey conducted on behalf of Cancer and Careers (CancerAndCareers.org) found that 78% of the cancer survivors surveyed were concerned that their cancer diag­nosis would hinder their ability to find a new job. For many survivors, job hunting after cancer proves to be a chal­lenging experience. However, you can rest assured that if you are qualified for a job, an employer cannot refuse to hire you simply because you have had cancer.

If you are one of those survivors who is back on the job market after battling cancer, here are some tips to help make your job search a success.

Spiff Up Your Resume
The primary goal of your resume is to describe your experience and achievements in a way that makes a prospective employer want to set up an interview with you to talk about how you can do the same great things for them. A resume is not a job description. So keep lists of tasks and responsibilities short and to the point. Instead, your resume should focus more on your accomplishments and how you were able to make a positive difference to your department or company. A bul­leted format works best for this part of your resume.

Another important element of a contemporary resume is a profile or summary, which is a brief paragraph at the top of your resume that summarizes your work experience. Your summary can be used to add a bit of personality to your resume. This is a good place to list the unique qualities that make you the right fit for the job.

The most important thing an employer is looking for during the interview process is how you, the job candidate, can solve their problems and meet their needs.

Author of Article photo

Julie Jansen

Most companies use applicant-tracking software to scan your resume’s keywords before a human reads it. So it’s important to add the right keywords to your resume. Use technical or functional descriptors such as project management, event planning, and website design, rather than clichéd phrases like effective communicator and team player.

Absolutely add volunteer experience to your resume, especially if you have an employment gap because you took time off for treatment or had to leave your job. Include a list of achievements for your volunteer experience, just as you would for your paid jobs. Finally, despite the persistent myth that a resume should only be one page, if you have worked for two or more years, then a two-page resume is the new rule of thumb.

Prepare for the Interview
Interview­ing for a new job is nerve wracking for most people, with or without a cancer history. Preparation is the key to feeling more comfortable and confi­dent during the interview process – and to getting invited back for that second interview.

The most important thing an employer is looking for during the interview pro­cess is how you, the job candidate, can solve their problems and meet their needs. Research the company as much as you can so that you can incorporate your knowledge of the company into the interview. This will also help you to ask smart, thoughtful questions about the job you’re applying for.

Prepare answers to the standard questions that are often asked during an interview, for example:

  • Tell me about yourself.
  • What are your strengths and weaknesses?
  • Describe a time when you failed.

When answering, tell stories about your achievements and use concrete ex­amples – but keep your answers brief and meaningful. Stay composed, and don’t let an interviewer’s quirky questions rattle you. Unless a question or request is discriminatory, just go with the flow.

Speaking of discrimination, you are not obligated to share the fact that you had cancer. And a prospective employer legally cannot ask you this question. However, in case a question about your health history does come up, you should decide in advance what your response will be. It is also a good idea to come up with a brief answer to ques­tions about gaps in your work history. If you are asked an uncomfortable question, try not to ramble. Instead, turn the conversation back to how you can make a positive difference for your po­tential employer.

The thought of looking for employ­ment after cancer can be a frightening one. However, the good news is that many companies are hiring, and now that you are armed with these job-hunting tips, you’re more prepared than ever to land that job you’re after.

♦ ♦ ♦ ♦ ♦

Julie Jansen is a career coach, resume and LinkedIn profile writer, and the author of I Don’t Know What I Want, But I Know It’s Not This: A Step-By-Step Guide to Finding Gratifying Work. Her website is JulieJansen.net.

This article was published in Coping® with Cancer magazine, July/August 2015.

Good Morning America’s Amy Robach

On Surviving Breast Cancer, Overcoming Fear, and the On-Air Mammogram that May Have Just Saved Her Life

by Kaylene Chadwell and Laura Shipp

Celebrity Cancer Survivor

Amy on the set of Good Morning America in New York
(Photo by ABC/Heidi Gutman)

Three years ago, Amy Robach made the move from the host position at NBC’s Weekend Today to take a job at rival network ABC’s Good Morning America. Little did she know at the time that her new job may have helped save her life.

In September 2013, GMA producers approached Amy with the idea of her getting a mammogram live on the show to kick off Breast Cancer Awareness month in October. Amy was 40 years old, had never had a mammogram, and didn’t have a family history of breast cancer. That was the exact demographic GMA wanted to reach.

At first, Amy was hesitant. (After all, who wants their mammogram broadcast live to millions of television viewers?) So she turned to GMA cohost and breast cancer survivor Robin Roberts for advice. Robin encouraged her by saying that if just one life was saved because of early detection, it would be worth it. With that, Amy knew what she had to do.

The Mammogram Broadcast Live to Millions
When the day of her mammogram arrived, like many women, Amy was nervous about the potential pain and physical discomfort it might cause, not to mention the millions of people who would be watching. “I was nervous about how it was going to look having a live camera right there on me as I was getting a mammogram,” she confesses in an interview with Coping magazine. “But more than that, I was worried about whether it would be effective. I didn’t want it to be a distraction to what we were trying to do, which was encourage women to get mammograms and to show that it isn’t that painful or scary.”

“I honestly thought it was nearly impossible for me to have breast cancer given my age and my lack of family history.”

The one thing she wasn’t worried about, however, were the results. “I honestly thought it was nearly impossible for me to have breast cancer given my age and my lack of family history,” Amy admits. “Even when I got the call from the mammogram technician saying, Hey, we see something a little suspicious; you should have a follow-up mammogram, alarm bells didn’t go off.”

The Diagnosis that Shook Her World
Still convinced she couldn’t possibly have cancer, Amy kept her breezy compo­sure through a series of follow-up tests, including a second mammogram and a needle biopsy. In fact, cancer was such a remote possibility to her that she even came to her ap­pointments alone. It seemed she had nerves of steel.

Then the results came in. The mass in her right breast – the one that was first spotted during her reluctant on-air mammo­gram – was malignant. Amy was floored.

“I had a visceral, guttural reaction,” Amy shares. “To say I was sobbing is an understatement. There was nothing any­one could have told me that would have been more shocking than that. I didn’t know how to react. My entire world col­lapsed, and I was there alone. It was absolutely the worst day of my life.”

As soon as they got the news, Amy’s family rallied to her side. But they were just as new to cancer as she was. So the next day, Amy picked up the phone and called the one person she knew would understand. Once again, her friend and col­league Robin Roberts was there to give her the emotional support and the “I’ve been where you are” advice she needed.

Right away, Amy knew she wanted to continue sharing her experience with the public. “I felt a deep responsibility to share my news,” she confides, “because I knew that when women who had watched me go into that mammogram heard I had breast cancer, they would stop making excuses, pick up the phone, and call their doctor to schedule their appoint­ment. I knew for a fact that women’s lives would be saved.”

So just six weeks after broadcasting her first mammogram live from Times Square, Amy revealed her breast cancer diagnosis to the viewers of Good Morning America. Though she did it to help other women, Amy says she feels like she got more in return than what she gave.

“Sharing my journey helped me get through those hor­rible months of treatment,” Amy says. “I felt the collective love and support of all the other women out there who were struggling with the same thing I was. I felt like I had a whole new set of friends and sisters. And it had a huge impact on my recovery.”

The Grueling Treatments
To rid her body of cancer, Amy opted for a double mastectomy followed by reconstruction. During surgery, her doctors discovered a malignant tumor in her left breast that hadn’t shown up on her prior mammo­grams. They also found that her cancer had spread to her sentinel lymph node. It was stage II. Now she would need to undergo eight rounds of intense targeted chemotherapy – complete with side effects like fatigue, nausea, and chemo brain – plus a decade-long course of Tamoxifen, of which she’s currently in her second year.

“There’s nothing like turning 40 and then taking a pill and feeling 55,” Amy jokes. “I’m in a constant state of menopause. I have hot flashes and night sweats. [Tamoxifen] basically robs my body of estrogen, because that’s what fuels my can­cer. The hope is that by taking this for the next nine years, I give myself the best chance of staving off recurrence.”

On Getting Back to Normal
“The cancer journey doesn’t end the day of your last treatment,” Amy shares. “It stays with you forever, and you figure out how to fight through it each day and live a better life.” However, two years later, it appears Amy has settled in to her new normal, cohosting Good Morning America and publishing a memoir, though she never really stopped working. She has also made it her mission to speak out about early detection.

She admits, though, that the one thing she hasn’t completely overcome yet is the fear cancer imposes. “I’m working on it,” she says. “But sometimes fear washes over you when you least expect it. I was on a ferry recently, and I saw some grandparents with their grandchildren. All of a sudden, this dark thought entered my head: Will I ever get to be old? Will I ever get to hold my grandchildren?

“Even now I get emotional thinking about it. But I’ve decided that when those moments happen, I’ve just got to cry it out a little bit. Then I can smile and say to myself, But I’m here right now. I’m more aware of how precious time is and how lucky I am to be here. So I’ve been fighting through my fear by using it to remind myself that right now I have everything I need.”

♦ ♦ ♦ ♦ ♦

Amy Robach’s memoir, Better: How I Let Go of Control, Held On to Hope, and Found Joy in My Darkest Hour, hits bookshelves on September 29. The book details her breast cancer journey and how her illness affected her family and her marriage.

This article was published in Coping® with Cancer magazine, September/October 2015.

The Other Seat

by Melissa Gallagher

Inspiration image

Melissa Gallagher (right) with her mother-in-law Carol Gallagher

On March 10, 2005, I was diag­nosed with a rare form of ovarian cancer when I was just 26 years old. I experienced a slew of emotions after the cancer bomb was dropped on my life, but self-pity was never one of them. In a way, I was relieved that I was the one with cancer and I didn’t have to watch one of my loved ones go through it. In my mind, now that our cancer card had been dealt, that meant my family members would somehow be protected from having to face this awful disease themselves. I’ve since learned that it doesn’t work like that.

For nearly a decade, I had been the one sitting in the “hot seat.” I’ve sat in the seat directly across from the oncologists as they explain options and rattle off medical terms. I’ve sat in the seat where you wait to be called into the exam room, the seat where you await your chemo hookup, the seat that gets wheeled into the operating room and then to recovery.

Fortunately, I’ve always had someone sitting in the seat beside me. Someone has always been there to hold my hand while I wait. Someone has always sat next to me, hearing the doc­tors say the same things I was hearing them say. Someone has always been waiting for me every time I’ve been examined or had an operation. For this I’m thankful, as I now know that the “other seat” is also a tough one to sit in.

For nearly a decade, I had been the one sitting in the “hot seat.” I now know that the “other seat” is also a tough one to sit in.

In November 2013, I received a phone call from my mother-in-law that shattered my belief that my cancer diagnosis would spare my family from the same fate. I felt my legs give out and the air escape my lungs as I heard the all too familiar words: oncologist, surgeon, cancer. For a fleeting second, I thought my own denial could prevent the things she was saying to me from being reality. If I just said no enough times, I could stop all this from happen­ing to her the way it happened to me.

Within a week, I was sitting beside my mother-in-law during a surgical con­sultation. This time, I wasn’t sitting in my regular seat; I was in the other seat.

I toyed with the stack of business cards on the desk in front of me and glanced around the room. I wondered if the nurse realized that I was sitting in the wrong chair. I listened as the nurse asked my mother-in-law questions about her ovarian cancer symptoms. Reality was caving in on me. I gave her a quick smile, as if to say, “Don’t worry; it’s going to be OK,” but really I felt like I had been transported back to the day I learned of my own diagno­sis. All the familiar feelings resurfaced – fear, desperation, hope, uncertainty.

I had always been thankful that my family members never had to sit in my seat. Today, I know how it feels to sit in theirs. Neither one is desirable. But with someone in each, you’ll never have to navigate the rough seas of cancer alone.

♦ ♦ ♦ ♦ ♦

Melissa Gallagher is a two-time small cell ovarian cancer survivor living in West Islip, NY.

This article was published in Coping® with Cancer magazine, July/August 2015.

Embracing Survivorship After Breast Cancer

by Carolyn Vachani, RN, MSN, AOCN

Breast Cancer image

“Congratulations! We’ll see you in six months.” You’ve been eagerly anticipating this announcement since you first heard the words “You have breast cancer.” But after settling in to a routine of treatments, scans, and doctor’s appointments, the news that you’ve beaten breast cancer might provoke an unexpected response.

Although you may have planned to celebrate the end of treatment, when the time comes, you may be surprised to find yourself bogged down by feelings of fear, uncertainty, and vulnerability, not to mention lingering side effects. You may have expected to get back to life as you knew it before cancer, but things have changed. You have changed.

While each breast cancer survivor has to find her own way of settling into her post-cancer life, there are some universal actions you can take to help make the transition a little easier.

Kick fear to the curb.
One of the most common fears people have after cancer treatment is fear that the cancer will return. Unfortunately, this fear may never completely go away. That’s not to say, however, that it doesn’t get easier to manage. Think of fear as a passenger in your car. Fear rides up front with you for a while, but as time goes by, you pick up new strategies for coping with difficult emotions, sending fear to the backseat. As you continue to pick up coping strategies, you have less and less room in your car for fear. Eventually, it is forced out of the car completely, and it becomes merely a reflection in your rearview mirror.

Talk with your medical team about putting together a survivorship care plan to help guide you through survivorship.

Author of Article photo

Carolyn Vachani

Fear may muscle its way back into the car now and then, riding shotgun as you face that annual mammogram or notice a worrisome symptom. That’s OK – just don’t let it take control of the steering wheel. Make use of the coping mecha­nisms you’ve picked up to help you manage your worries (such as meditation, exercise, or an enjoy­able activity like knitting or gardening) until fear is once again just a speck in the rearview mirror. And remember that your doctor is only a phone call away if you need reassurance.

Stick to a plan.
Talk with your medical team about putting together a survivorship care plan to help guide you through survivorship and address your post-treatment concerns. Whether it involves long-term hormonal therapy or annual mammograms, your survivorship care plan can help keep you on the path to wellness, so it’s important to stick with it. If side effects or other issues are interfering with your ability to follow the plan as prescribed, talk with your medical team to come up with ways to manage these issues so you can stay on track.

Make your health a priority.
Re­search has shown that certain healthy behaviors – like maintaining a healthy weight – may lower the risk of breast cancer recurrence. Use the transition from treatment to survivorship as a time to implement a healthier lifestyle. Since everyone can benefit from making healthy choices, you can recruit your whole family to join you in your quest for wellness. Make a commitment to eat healthier meals and incorporate ex­ercise into your daily routine. You may have to start slow, but a simple daily walk through the neighborhood is a great way to get started. Push yourself to go a little far­ther each week.

Pay it forward.
Many breast can­cer survivors find it helpful to use their cancer expe­rience to help others. Give your­self time to heal both physically and emotionally, and when you’re ready, consider giving back to the cancer community in some way. You could join a mentorship program to guide women who are newly diag­nosed with breast cancer, help raise funds for a cancer charity, or volunteer at your local cancer treatment center. Many survivors find that giving back to the cancer community gives mean­ing to their cancer experience and helps them move forward as a breast cancer survivor.

The transition from active treatment to breast cancer survivorship isn’t always an easy one. However, with the right tools and a survivorship care plan in place, you can embrace your survivorship with a renewed sense of purpose and a new outlook on life.

♦ ♦ ♦ ♦ ♦

Carolyn Vachani is an oncology advanced practice nurse at the University of Pennsylvania’s Abramson Cancer Center in Philadelphia, PA. She is the managing editor of OncoLink (OncoLink.org) and creator of the OncoLife Survivorship Care Plan.

If you’re nearing the end of active treatment for breast cancer, ask your doctor for a survivorship care plan, or create one at OncoLink.org/OncoLife.

This article was published in Coping® with Cancer magazine, July/August 2015.

Tips for Young Adults Navigating the Challenges of Cancer

by Phoebe Souza, LCSW, and Karen Fasciano, PsyD

Photo by Cancer Type

While cancer disrupts life at any age, for young adults, the disruption often occurs while you are still establishing a sense of personal identity and making crucial de­cisions regarding your education, career, and relationships. Before your diagnosis, you were probably making plans for the future, feeling in control, and exploring your newfound independence. However, the emotional burden of cancer may have left you feeling isolated from your peers, vulnerable, dependent, and uncertain about what comes next. Changes in rela­tionships, issues surrounding sexual health and body image, and difficult emotions are common areas of concern for young adults going through cancer treatment, and figuring out how to bal­ance normal life and the demands of cancer can be a challenge.

Relationships
Most young adults diagnosed with cancer have never had a serious illness. Feeling sick, navigating health insurance options, undergoing scans and blood work, and scheduling countless doctor’s appointments are new experiences, so you’ll probably need a little help. Although moving back home, receiving financial assistance, and asking for help with daily tasks can be difficult – especially if you were enjoying your first taste of independence prior to your diagnosis – you may need to rely more on your parents, your partner, or your friends during this time.

Your needs will change throughout treatment, so open and frequent com­munication with your family and friends is necessary. In many cases, connections between you and your support system will become stronger and more honest. However, you may learn that certain friends or family members are not able to provide the support you need, and instead may actually contribute to your stress.

Author of Article photo

Phoebe Souza

Sexual Health and Body Image
Like their peers, young adults coping with cancer grapple with issues surrounding fertility, sexual function, intimacy, and body image. Consequently, sexual problems and changes in your physical appearance resulting from treatment are particularly distressing. Talk to your doctor about any concerns you may have. Seeking support and information on these issues from your healthcare team, and possibly even from a mental health professional, can help you better cope with the physical and sexual changes brought on by cancer.

Difficult Emotions
As you make your way through diagnosis and treatment, you may experience strong, unpredict­able emotions. Anxiety and sadness are common for young adults dealing with cancer, and the intensity of these feel­ings can be overwhelming. Everyone copes differently, so you’ll need to de­termine which coping strategies work best for you. Coping strategies for dif­ficult emotions might include practicing self-reflection, distracting yourself from anxiety-provoking situations, focusing on the positives in your life, and engaging in relaxation exercises, mindfulness-based practices, or other activities you find pleasurable. You may also benefit from working with a mental health professional.

Author of Article photo

Dr. Karen Fasciano

Peer Support
Peer support is critical for young adults who desire normalcy in the face of illness, as many young adults experience isolation in cancer treatment settings, where there aren’t many fellow survivors in their age group. Since social media and Internet-based communities are staples of young-adult culture, on­line support groups can be a great way to connect with other cancer survivors in your age group. However, you’ll want to err on the side of caution when you log in. You may come across stories from survivors who had negative experiences, which can cause unnecessary anxiety.

Survivorship
While happiness and re­lief are common feelings after treatment, so are a range of conflicting emotions, including gratitude, guilt, grief, anger, sadness, and hope. Survivorship is a transitional time for young adults during which they integrate their new perspec­tives into their future goals. However, young adults often find that they need increased emotional support during this time, sometimes even more so than dur­ing active treatment.

As a young adult with cancer, you’ll face unique challenges and require differ­ent types of support compared to children and older adults with cancer. But with the right tools and support, you can success­fully navigate the challenges of cancer. Cancer may have changed the way you imagined your life would turn out, but you can use this experience as an oppor­tunity to grow and to gain important life skills that will help guide your future.

♦ ♦ ♦ ♦ ♦

Phoebe Souza is a social worker in the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute in Boston, MA, who works with adolescents and young adults with cancer and their families. Dr. Karen Fasciano is an instructor in the Department of Psychiatry at Harvard Medical School in Boston, MA, as well as a senior psychologist in the Department of Psychosocial Oncology and Palliative Care and director of the Young Adult Program at Dana-Farber Cancer Institute.

This article was published in Coping® with Cancer magazine, March/April 2015.

Adopting a New Normal after Cancer

by Kathleen McBeth, MA

Author of Article photo

Kathleen McBeth

After my doctor told me I had cancer, the rest of the visit was a blur. I was told that I would eventually discover a “new normal,” but this concept was lost on me. I just wanted to have my old normal back.

Despite the addition of frequent doctor’s appointments and trips to and from treatment, I tried to maintain my pre-cancer routine. After finishing treatment, I went to graduate school to become a clinical psychologist. Through my focus on working with cancer sur­vivors, I found that many people shared my aversion to adopting a new normal. However, as I learned from my own cancer experience, some lifestyle modifications are necessary.

Having cancer is a full-time job. In addition to enduring the actual cancer treatments, your tasks include regaining a sense of normalcy and finding new ways to carry out essential daily activi­ties. For many of the people I work with, this adjustment takes a few tries. We may cry, grieve, or get angry, and then finally we focus on what needs to happen with our oncology treatment and our emotional well-being.

The first 100 days post-diagnosis is often a time of heightened activity. For many survivors, this is also a time of shock and emotional numbness. This initial sense of emotional disconnect actually protects you as you face sur­gery or the beginning of chemotherapy or radiation treatment.

Once the shock wears away, you become more aware of the difficulty of your situation, and you eventually have to deal with the emotions you were previously numb to. These feel­ings shouldn’t be ignored. There are many avenues of coping with these difficult emotions, and it’s important to find the ones that are most helpful for you.

Having cancer is a full-time job.

Uncovering coping mechanisms that have worked for you in the past is a good place to start. Was finding a distraction, such as visiting with friends, going to a movie, or lis­tening to music, helpful? Have you tried mindfulness techniques like meditation or visualization? Does it help to talk about your distress with family members, friends, or medical professionals?

Being able to recognize that you’ve found ways to cope with challenges in the past, and you can use these same methods to help you get through your current situation is often helpful. Learn­ing new strategies, such as taking a yoga class, joining a support group, or journal­ing can be effective tools.

Adjusting to a new normal after cancer treatment requires you to think about how you lived your life in the past, as well as how you want to live it going forward. Are you willing to take a step toward living fully by focusing on what you have now instead of what you would like to have in the fu­ture? For many the focus is to make the best of your relationships and build new ones.

Many of the survivors I work with say that cancer has taught them to live in the present. This statement is very helpful when you are concerned about whether your treatment is work­ing or anxiously awaiting the results of your latest scan – focus on the present moment. Relish the time you spend with friends. Delight in the laughter of your children or grandchildren. Savor the sensation of cool rain falling onto your skin.

In 2013, when I was diagnosed with cancer for a second time, I didn’t spend time asking “why me?” and clinging to my now-old new normal. Instead, I gathered my support system – my medical team, my family, my friends, my books, and my sense of purpose – and I enlisted the help of coping strategies that got me through my first round with cancer. Prepared to accept and adapt to another new normal, all I needed to do was remind myself that I could pick up the tools I found so helpful in the past and utilize new strategies when necessary.

♦ ♦ ♦ ♦ ♦

Kathleen McBeth is a two-time cancer survivor and a clinical psychologist at the Vermont Cancer Center in Burlington, VT.

This article was published in Coping® with Cancer magazine, July/August 2015.

Get the Facts on Myelofibrosis

 

Photo by Cancer Type

Myelofibrosis is a rare bone mar­row cancer in which the marrow is replaced by fibrous (scar) tissue. Myelofibrosis can occur on its own, called primary myelofibrosis, or as a progression of other bone marrow diseases. Myelofibrosis belongs to a group of closely related blood cancers, known as myeloproliferative neoplasms, in which the bone marrow cells that produce the body’s blood cells develop and function abnormally. The result is excessive fibrous tissue formation in the bone marrow, which can lead to severe anemia, weakness, fatigue, and an enlarged spleen and liver.

The cancer develops when a muta­tion occurs in the DNA of a single blood-forming stem cell. Blood stem cells have the ability to reproduce and divide into multiple specialized cells that make up the blood. As the mutated blood cell replicates and divides, it passes along the mutation to new cells. Eventually, this abnormal cell produc­tion overtakes the bone marrow’s ability to produce enough normal blood cells, including

  • red blood cells, which carry oxygen to the tissues,
  • white blood cells, which fight infection, and
  • platelets, which help blood to clot.

When the bone marrow is unable to make enough healthy blood cells, the result can be severe anemia, weakness, bone pain, fatigue, and increased risk of infection. The abnormal growth of blood-forming cells can also take place outside of the bone marrow, called extramedullary hematopoiesis, in such organs as the liver, spleen, lungs, lymph nodes, and spinal cord, causing swelling.

An important constant feature of myelofibrosis is the production of too many megakaryocytes, the term for the giant cells in the marrow that break up into fragments and produce hundreds to thousands of platelets. Platelets are small blood cells that stick to the site of a blood vessel injury and form a plug to seal off the injured blood vessel to stop bleeding. Normally, new platelets are made to replace used platelets in the body. With myelofibrosis, extra mega­karyocytes are made, causing too many platelets to be released into the blood and chemicals called cytokines to be released into the marrow. The cytokines stimulate the development of fibrous tissue in the marrow. Paradoxically, the number of megakaryocytes can become so abnormal that platelet production de­creases in some people with this disease.

About 50 percent of people with myelofibrosis have a mutation called V617F JAK2 found in the JAK2 gene. The gene mutation causes abnormal signaling in the JAK pathway, which regulates blood cell production. This dysregulation of the JAK pathway can lead to an enlarged spleen and other serious complications, such as a low platelet count and severe anemia. Be­tween 5 and 10 percent of people with myelofibrosis will have a myeloprolifera­tive leukemia (MPL) gene mutation, which also affects the JAK signaling pathway. In addition, mutations in the TET2 gene have been found in 5 to 15 percent of people with myeloproliferative neoplasms. Scientists are investigating the role TET2 mutations, and other gene mutations in other signaling pathways, may have on myelofibrosis onset.

The reason these genetic mutations occur in myelofibrosis is unknown. Exposure to petrochemicals, such as benzene and toluene, and ionizing radia­tion may raise the risk of developing the cancer. However, only a small propor­tion of people exposed to these chemicals develop myelofibrosis. A theory about why myelofibrosis develops in some people is that they have inherited genes that limit their ability to detoxify the causative agents. However, myelofibro­sis itself is not an inherited disease. There is no known prevention.

♦ ♦ ♦ ♦ ♦

Reprinted with permission of The Leukemia & Lymphoma Society from lls.org, Myelofibrosis Facts. All rights reserved.

This article was published in Coping® with Cancer magazine, July/August 2015.

10 Years Later …

What Can I Do Now?

by Dennis “Doc” Knowles

Inspiration image

It’s been 10 years. Ten, sometimes very long, years since I was diagnosed with multiple myeloma. I’ve outlived my oncologist’s most optimistic predic­tion. The cancer that was once the sole focus of my life is no longer the center of my universe. The disease is no lon­ger detectable in my body. For this, I thank God often.

I don’t really know what I expected to happen after I was given the all clear. Perhaps a parade or some wild celebra­tion publicized by a full-page ad in The New York Times: “Dennis has survived cancer! Join him and everyone he’s ever known for a mega party in Shea Stadium!”

I can’t say that I’m disappointed this wasn’t my reality (OK, maybe a little), because I know that life just doesn’t work that way. Cancer has left me more than a little broken, physically and financially. I should probably be bitter, but I’m not. My life is what it has always been – a journey.

My life is what it has always been – a journey.

I, however, have found myself on a quest to be relevant. I want to be useful again. I want my life to have meaning and purpose. I feel as though I’ve been lost at sea for 10 years, and now that I’ve made it safely back to shore, I want to pick up where I left off. The prob­lem is that I can’t. Before cancer, I was able to work 10 to 15 hours a day. Now if I work 10 hours, I need 24 hours to rest. I used to get up at 3 a.m. I would shower, get dressed, and go. Now I sleep until seven and then sit for an hour or two until I know that all of my parts re­quired for moving will actually move. This definitely is not how I imagined my recovery.

Don’t get me wrong. I’m not com­plaining. I’m just trying to be honest about what I can and can’t do. Horse ranching, for example, is out. So is skydiving and panning for gold in Alaska. No big loss. Those things were never on my bucket list anyway.

So what can I do? I can stay active, mentally and as physically as my 63-year-old cancer survivor’s body will allow. I can also share what I’ve learned over the past 10 years. I can offer hope and encouragement to other cancer survivors and their families.

I can tell them that there is life after cancer. I can reassure them that there will come a time when whole weeks will pass without a single utter­ance of the C word. I can tell them that one day they’ll wake up from this nightmare, and it will be time to get busy reclaiming their lives. I can attest that surviving cancer is significant and life changing but it’s not the end – it’s only the beginning. Finally, I can say that I’ve found that the sweetest fruit always grows at the end of the branch, and to get it, you have to go out on a limb.

♦ ♦ ♦ ♦ ♦

Dennis Knowles is a multiple myeloma survivor living in Orting, WA.

This article was published in Coping® with Cancer magazine, May/June 2015.

A Transformative Moment for Cancer Research

Annual Progress Report from the National Cancer Institute

by Douglas R. Lowy, MD, acting director of the National Cancer Institute

Knowledge image

"An investment in knowledge,” Benjamin Franklin once wrote,
“pays the best interest. "

Although he was writing specifically about financial advice, Franklin’s words could no doubt apply to decades of scientific investment that is opening up numerous, exciting opportunities for progress against cancer. From the rapid emergence of immune-based therapies to the continued advances in cancer genomics that are forever altering how we think about and approach preven­tion, diagnosis, and treatment – this is truly a transformative moment for cancer research.

As the leader of the U.S. National Cancer Program, the National Cancer Institute is focused on seizing this moment. Over the last year, since the readers of Coping last received an annual report from NCI, I can confidently say that we have made important progress. And during that time, much has changed.

In March 2015, after five years as NCI Director, Dr. Harold Varmus stepped down from the position. Among his many achievements while at NCI, Dr. Varmus launched important initia­tives that will have a lasting impact on our ability to reduce the burden of cancer not only in the United States but also in other countries.

I was honored to be asked by President Obama to serve as acting NCI director, and it was an offer that I enthusiastically accepted. Because after more than three decades of conducting research at NCI, I believe we have reached a crucial moment in cancer research. Perhaps at no other moment in history, in fact, have we had such a singular opportunity to make monumental leaps in our understanding of the collection of diseases that we call cancer, and in our ability to prevent and treat it.

Perhaps at no other moment in history have we had such a singular opportunity to make monumental leaps in our understanding of cancer.

Part of this belief is rooted in President Obama’s January 2015 an­nouncement that he was launching a Precision Medicine Initiative. The President called precision medicine “one of the biggest opportunities for breakthroughs in medicine that we have ever seen,” and I wholeheartedly agree. NCI will play a critical and lead­ing role in the President’s Precision Medicine Initiative as we seek to make precision medicine a regular part of cancer care in the very near future.

In general, precision medicine in­volves routinely using detailed genetic and other molecular information about a person’s cancer to select effective, patient-specific remedies to treat it. For nearly ten years, NCI has been at the forefront of precision medicine – launching important programs like The Cancer Genome Atlas and, more recently, the Exceptional Responders Initiative. A large component of the Precision Medicine Initiative is devoted to cancer, and NCI will continue to ini­tiate new research to explore the benefits of precision medicine in cancer preven­tion and treatment.

Our focus will be on conducting precision medicine clinical trials, better understanding tumor resistance to treat­ment, and developing robust information platforms that facilitate the study of the molecular drivers of cancer and the incorporation of precision medicine into everyday patient care.

In June, we announced a rigorous, large-scale precision medicine trial called NCI-MATCH (Molecular Analysis for Therapy Choice). In this clinical trial, which will enroll as many as 1,000 people with different cancer types, participants will be assigned to smaller component trials in which their treatment will be based not on their type of cancer but on certain genetic abnormalities thought to be driving their cancer (based on genomic testing of their tumor samples). Treatments will be selected from more than twenty FDA-approved and investigational agents to “match” a specific genetic abnormality in each person’s tumor.

Although NCI already supports a large portfolio of cancer health disparities research, it’s one of several areas where I believe the Institute can more sharply focus its efforts.

Importantly, a pediatric counterpart to NCI-MATCH is being planned that will enroll children with advanced cancer that has progressed despite standard-of-care treatments. This trial will offer a unique opportunity to study whether many of the targeted therapies used in or being studied for use in adults can benefit children with cancer.

The adult and pediatric NCI-MATCH trials are just two of a series of new precision medicine trials being conducted under the auspices of NCI’s National Clinical Trials Network (NCTN). Last year at this time, the NCTN – the product of a complete revamping of NCI’s prior clinical trials program, known to many as the Cooperative Groups – was just launching. I’m happy to report that the new program is now in full swing and is offering people across the country easy access to all NCI-supported trials, including precision medicine trials such as NCI-MATCH.

Last year, NCI also launched the NCI Community Oncology Research Program (NCORP). This program, which replaced NCI’s previous community-based clinical trials program, will bring cutting-edge trials to more communities across the country – to people where they live.

NCORP will also conduct studies to assess and improve how everyday cancer care is delivered, and to help address what in my view is an extremely serious public health issue: disparities in cancer incidence and death among racial, ethnic, and socioeconomic groups. Examples of these disparities are dis­couragingly abundant, such as the higher rate of prostate cancer death among African American men and the high incidence of cervical cancer among Hispanic and Latino women.

Although NCI already supports a large portfolio of cancer health dispari­ties research, it’s one of several areas where I believe the Institute can more sharply focus its efforts. Two other areas in which I think NCI can bring more clarity to our efforts are prevention and early diagnosis and basic research.

We must remain committed to funding excellent science. Because excellent science, by its very nature, will always promote progress.

With health disparities, I believe it’s critical that we focus on what we consider to be the most serious and important concerns and take the neces­sary steps to better address this issue. The same holds true for prevention and early diagnosis. We’ve had some important and high-impact successes in prevention – including dramatic reductions in smoking rates and the development of HPV vaccines – but with 1.6 million new U.S. cancer cases and 600,000 cancer deaths forecast for 2015, clearly there are opportunities for greater progress.

Basic research accounts for ap­proximately half of NCI’s budget. And although that research is often viewed through the prism of its likelihood of leading to a clinical application, such as a new treatment or screening test, many of our most important advances have come from basic research that had no such ambitions. In short, we must remain committed to funding excellent science. Because excellent science, by its very nature, will always promote progress.

Beyond changes at NCI, the past year has seen a number of noteworthy, practice-changing advances – progress that is due in no small part to NCI-conducted and supported research.

For example, immunotherapies continue to generate much-deserved enthusiasm. The U.S. Food and Drug Administration has already approved immunotherapy drugs known as check­point inhibitors for the treatment of melanoma and, in March 2015, for treat­ing people with advanced non-small cell lung cancer. Based on a growing body of data from ongoing clinical trials, many in the research community ex­pect that immunotherapies will become part of our standard treatment arsenal for many cancers.

The FDA also recently approved a third HPV vaccine that protects against nine different types of the human papil­lomavirus, seven of which can cause cancer. While we already know that the vaccines protect against cervical cancer, there is emerging evidence that they also protect against other cancers, including head and neck cancer, the rates of which have increased dramatically over the past decade, particularly in men.

And we now have the first approved treatment for children with a high-risk form of neuroblastoma, the most com­mon solid tumor in children – the immunotherapy drug Unituxin. For the better part of two decades, NCI supported the development of this agent, which is now the standard of care for children diagnosed with high-risk neuroblastoma.

In short, I’m happy to report that progress is happening on many fronts. And I look forward to penning this report a year from now, confident that I will have other important successes to share and that our investment in cancer research will continue to lessen the burden of cancer and improve the health and well-being of our nation.

♦ ♦ ♦ ♦ ♦

Since 1994, the National Cancer Institute has written an exclusive annual report for Coping’s July/August Celebration issue.

If you would like to learn more about precision medicine, the NCI-MATCH trial, or any of the other information presented in this article, call NCI’s Cancer Information Service at 1-800-4-CANCER or visit the NCI website, cancer.gov. And for news on the latest cancer research findings and new NCI programs and initiatives, visit NCI’s Cancer Currents blog at cancer.gov/news-events/cancer-currents-blog.

This article was published in Coping® with Cancer magazine, July/August 2015.

How I Learned Acceptance on the Berkeley Fire Trails

by Marcia Renée Goodman

Inspiration image

Standing in the specialty running store with my 25-year-old daugh­ter Dani and my childhood friend Felice, I am in good fitness company as we survey the options of running shoes laid out before us. Dani was an All-American athlete in college. Felice was the fastest runner in our elementary school. Both have kept in shape.

I, on the other hand, have slacked off in the fitness department over the last several years of cancer treatments. My knees ache, I have neuropathy in my feet, and cancer-related fatigue is a constant presence.

But on this morning, I’ve decided to gear up and hit the fire trails. It is springtime in Northern California, after a long winter, and I am learning to live with ongoing maintenance chemotherapy for recurrent ovarian cancer. I’m not feeling great on this particular day because of a recent chemo treatment, but I’m happy to be out in Berkeley with two dear ones.

After an indulgent hour of trying on this and that brand, we walk back to my house, each of us carrying a bag with bright new running shoes in neon trim colors. By the time we walk the half-mile home, all I can do is sit on the sofa. So Dani and Felice run the hilly fire trails of Berkeley without me.

My friends often remind me that none of us is young anymore; all of our bodies have lost something.

I feel sorry for myself at first, and then I rally and set to work grading essays. I find a sense of peace and pur­pose sitting there evaluating my students’ efforts as the afternoon drops around me.

The next day, my daughter and friend go out again to run the trails together. I am still not up for it. A feeling of loss and longing washes over me as I think about my younger, pre-cancer body and the reality sinks in that I likely will never be off treatment. I push those thoughts aside and get back to grading. Again, I am soothed by the feel of papers and words in my hands, by the struggles of my students, and by the light streaming in through the window.

By the following week, I am feeling better. Felice has returned home to the East Coast, so I hit the fire trails with Dani. We walk together and then jog a bit before she takes off to run at her own pace without me slowing her down.

The next day, I’m out there alone, interval jogging: jog, walk, jog, walk. And the day after that, I am back again. Then the next day, and the next, until I realize I am continually jogging. Very slowly, but I am actually keeping pace.

I am flooded with memories of being 23 years old and running through Golden Gate Park, of playing softball, tennis, and volleyball. Sometimes I find it hard to believe that I was ever that fit.

My friends often remind me that none of us is young anymore; all of our bodies have lost something – whether to cancer or just aging. None of us can do what we used to. I find comfort knowing that I’m not alone in this. I am getting older, after all – it’s not just cancer treatment slowing me down. And getting older is the thing I’ve wanted most since my diagnosis 17 years ago.

But it’s not always easy to accept the reality of growing older. Or the reality of cancer treatments that will never end. Like many who are strug­gling with loss, sadness, or fear, when these things keep me awake at night, I try to think about what I have to look forward to the next day, what I can be grateful for. I try to relax and just be.

Lately, amazingly, I’ve been on a chemotherapy break, the first extended chemo break I’ve had in several years. Slowly, my body has been coming back to me. The neuropathy has lessened some, the fatigue is much milder, and my appetite is almost completely re­stored. My hair is back to some extent, though it is thinner, grayer, and more limp. I don’t know how long this break will last. The cancer will be back; it’s just a question of time.

I often wonder how others think about time, my great preoccupation since my diagnosis at age 43. Certainly, I’ve had more years than I once feared I would have. I’ve had a long, loving marriage and a deeply satisfying career; I’ve seen my children grow up. But I am not satisfied.

I often tell my doctor that he must keep me alive until I’m 70. That seems a fair age to me, the beginning of “being old.”

“Oh, but then you will say 80,” he tells me.

“Of course,” I answer. “Of course.”

♦ ♦ ♦ ♦ ♦

Marcia Renée Goodman is an ovarian cancer survivor living in Berkeley, CA.

This article was published in Coping® with Cancer magazine, July/August 2015.

Treating Cancer in Older Adults

by Hyman B. Muss, MD

Knowledge image

“I didn’t know older people got cancer.” I hear this frequently from newly diagnosed older adults, who are often surprised to find out that the risk of getting cancer rises dramatically with age. But the fact of the matter is that, thanks to improvements in healthcare, people are living longer, resulting in an increasingly larger population of older Americans and, subsequently, an ever-growing number of older adult cancer survivors.

Currently, in the United States, the average age of someone newly diagnosed with cancer is 67. The problem is that most of what we know about caring for older adults with cancer comes from re­search done on much younger patients. What may be the best treatment for a 40-year-old may not be the best treat­ment for a 75-year-old. Moreover, the goals of treatment may differ according to a person’s age.

Someone who is younger may accept harsher side effects in exchange for small improvements in survival, while someone who is older may focus on maintaining function and living independently for as long as possible. The challenge in taking care of an older adult with cancer is accurately weighing the treatment’s effect on function and independence against its potential benefit in treating their cancer. A cancer diagnosis is scary, but for an older adult with other major illnesses, like heart or lung disease, cancer may not be the primary health concern.

Ask your doctor if he or she is experienced in caring for older adults with cancer and if you would benefit from a geriatric assessment.

Author of Article photo

Dr. Hyman Muss

When it comes to making treatment decisions, it’s not your age that matters; it’s how much longer you’ll likely live. Healthcare professionals have a variety of tools that can help them predict an individual’s life expectancy by taking into account other, non-cancer illnesses, as well as functional status. On aver­age, a healthy 65-year-old will live to be 85, a healthy 75-year-old will live to be 87, and a healthy 85-year-old will live to be 91. So for an otherwise healthy 77-year-old who has developed a life-threatening but potentially treat­able cancer, state-of-the-art cancer treatment should be considered. Older adults with cancer who are in good health generally tolerate modern cancer therapies, including surgery, radiation, and even chemotherapy, just as well as younger survivors.

Making decisions is harder when an older individual is diagnosed with a cancer that isn’t curable but is causing side effects, or when that person has a potentially curable cancer in addition to a non-cancer illness that is causing major problems in function and quality of life. In these instances, medical care should be tailored to the individuals’ treatment goals, and the potential for cancer treatment to make a bad situa­tion worse should be considered.

So what should you do if you’re an older adult newly diagnosed with cancer? First, put together a team of healthcare professionals you trust. Make sure you know each team member’s role in your care.

Ask your doctor if he or she is experi­enced in caring for older adults with cancer and if you would benefit from a geriatric assessment, which would eval­uate your level of functioning, nutritional status, and available social support. This assessment can detect problems related to aging that cancer specialists may overlook but that can be addressed to make your cancer treatment more easily tolerable.

Bring a friend or family member along to your appointments to keep you company, take notes, and support you. It’s hard to remember everything said to you during a clinic visit, and although many doctors provide treatment summa­ries, it is very helpful to have someone there to take notes and serve as a second pair of ears.

You may want to ask your doctor if you’re eligible to participate in a clinical trial. Clinical trials usually represent the cutting edge of cancer care; however, doctors are less likely to offer them to older adults, even if they’re eligible to participate. That’s why you should always ask. In the majority of clinical trials with senior adult participants, the older population has benefitted from the exciting new treatments just as much as the younger individuals have.

Make sure you and your family are on the same page concerning your wishes. Sometimes family members want you to take a more aggressive treatment route than you do; sometimes it’s the other way around. You should discuss your goals and wishes with your friends and family, but ultimately, you’re the one who should make the final decisions regarding your care.

♦ ♦ ♦ ♦ ♦

Dr. Hyman B. Muss is professor of medicine at the University of North Carolina at Chapel Hill School of Medicine and director of geriatric oncology at UNC’s Lineberger Comprehensive Cancer Center in Chapel Hill, NC.

This article was published in Coping® with Cancer magazine, May/June 2015.

My Raven Moccasins

by Barbara Center

Inspiration image

I’d forgotten about my raven-black moccasins, still safe in their box on the top shelf of my bedroom closet. I’d for­gotten about their rubber nonslip soles, the white and gold beads that gently adorn their black leather tops, and the trim – four inches of soft black fur – that hugged my ankles and lower calves.

A year had passed since I’d bought my beloved moccasins at the Native Canadian Centre in Toronto. A mild winter had given way to an early spring, and the cozy black moccasins were on sale in the gift shop. Like Cinderella, I slipped them on my feet – a perfect fit. Immediately I fell in love, thinking they would make a fantastic Leap Year birthday present to myself. Even at half-price, they were a little rich for my pocketbook. But something more sinister was causing me to hesitate on my splurge.

“You have stage IV incurable lym­phoma,” my oncologist had told me. “Your only chance for survival is seven months of aggressive chemotherapy, followed by six rounds of total body radiation, culminating in a month-long hospital stay and a stem cell transplant.”

Like Cinderella, I slipped them on my feet – a perfect fit.

At age 64, I was a high-risk prospect for a transplant. Why was I even consid­ering buying the moccasins? If I didn’t survive treatment, they would just be one more thing that my sons would have to deal with as they sorted through my estate. But what if I did survive? Like their raven-black color, the moccasins were symbolic – they signified my future beyond cancer. Choked up and teary-eyed, I bought my precious gift.

Inspiration image

Barbara’s moccasins symbolize her future beyond cancer.

That April, I started my treatment, and in September, I was admitted into the hospital for the stem cell transplant. By mid-October, bald and severely underweight, I was discharged to a convalescent home for seven weeks of recuperation. I finally returned to my apartment in December after three months away. The clocks hadn’t been changed, and the calendars still showed the autumn leaves of September.

When January rolled around, my oncologist gave me a new report: “Your CT scan shows no signs of lymphoma.”

Another Leap Year birthday ap­proached, and I refused to take it for granted. Gingerly, I opened the box that had kept my moccasins safe. I lifted them softly from their cradle and slipped the extravagant beauties on my impoverished feet. As I savored their soft caress, tears began to flow.

Never again will my raven mocca­sins sit untouched on my closet shelf. I wear them every day as a witness to my future.

♦ ♦ ♦ ♦ ♦

Barbara Center is a stage IV lymphoma survivor living in Toronto, ON, Canada.

This article was published in Coping® with Cancer magazine, May/June 2015.

WOW, Am I Ever Angry!

7 Steps for Coping with Angry Feelings

by Gary McClain, PhD

Author of Article photo

Dr. Gary McClain

I don’t know anyone who doesn’t get angry. And there’s nothing wrong with that. After all, anger is a basic human emotion, like sadness or happiness. Certain situations evoke angry feelings by reminding us that life isn’t always fair, that it doesn’t always go the way we think it should. No one knows this better than someone who is living with cancer.

In my job as a therapist, I work with people who are facing illness. Cancer survivors often talk to me about their angry feelings and the causes behind them. Some common complaints include day-to-day uncertainty, complications from treatment, unwanted lifestyle changes, financial issues, and stressors at home.

Our culture teaches us that we shouldn’t get angry; it won’t do us any good. Anger will cause us to lose con­trol, which will ultimately lead to disaster. Allow me to quash this mis­conception. Anger does have a pur­pose. It triggers the fight response from our fight- or-flight instinct, which motivates us to take action. Sometimes fighting – by defending or advocating for ourselves – is what we need to do.

While getting mad is a human reaction, holding on to anger can have a negative effect on your wellness and can contrib­ute to conditions like depression. Still, knowing how to release these feelings isn’t always clear, so here are seven steps to help you let go of anger.

1 Count to 10. Yes, this is one of the oldest tricks in the book. You’ve probably seen it used in a television sitcom or two. But I can tell you from personal experience that it works. Counting to 10 gives you a chance to calm yourself down before you react in a way you might regret later. As you count down, don’t forget to breathe.

2 Step out of the story. Ask yourself if there is a story behind your anger. If you’re thinking, “this always happens to me,” or “I never get what I want,” you may be setting yourself up to relive angry feelings from your past. Try to react to your current situation, not to a similar situation from the past. By staying in the moment, you’ll be less likely to blow your current situation out of proportion.

3 Reconsider your expectations. If you’re feeling angry about the outcome of a situation, ask yourself what you were expecting to happen. Were your expectations realistic? Remind yourself that you’re not in control of everything. (Isn’t that a relief?) Keeping realistic expectations helps you avoid disappointment that can lead to angry feelings.

4 Look for the humor. Finding the humor in a situation can go a long way toward diffusing the rage rush that anger can evoke and helping you keep your perspective. Give it a try. How about having a good laugh about the way life seems to get in the way of our plans?

5 Have a heart. Accept your feelings – all of them – and recog­nize that you’re only human. Don’t be too hard on yourself. Give yourself a break, and you’ll find it easier to give others a break too.

6 Reach out for support. Find a friend or family member who will listen to you without judging your feelings or trying to tell you what to do. Vent if you need to. Let those angry feelings out.

7 Take care of yourself. Are you placing the needs of others before your own needs? Has your self-care routine been neglected? Not taking care of yourself can leave you feeling emotionally and physically depleted and especially vulnerable to angry feelings, so it’s important to make some time for yourself every day. Take a walk, listen to music, do something you enjoy.

Remember, you don’t have to avoid feeling angry, but you don’t have to allow anger to control you either. Accept difficult feelings for what they are, and find positive ways to release them.

♦ ♦ ♦ ♦ ♦

Dr. Gary McClain is a therapist, patient advocate, and author living in New York, NY, who specializes in working with individuals who have been diag­nosed with chronic and catastrophic medical conditions, their caregivers, and professionals. Visit his website at JustGotDiagnosed.com.

This article was published in Coping® with Cancer magazine, May/June 2015.

Life After “The News”

Managing Distress after a Cancer Diagnosis

by Alexandra Gee, PsyD, and Teresa Deshields, PhD

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So you’ve been diagnosed with cancer. Your mind is flooded with questions, and waves of difficult emotions wash over you. Or maybe you’re feeling nothing at all, stricken with numbness or disbelief. The days following your diagnosis are a blur as you try to pro­cess the news and prepare for what’s to come. It’s difficult to think of any­thing other than cancer and what it means for your life.

This sudden health threat, and all that accompanies it, can lead to physi­cal and emotional distress. How do you deal with it when you already have enough on your plate?

It’s important to know that distress is a normal reaction to life-altering news. In fact, allowing yourself to feel the emotions that arise, without the pressure to “be strong” or “think positive,” can be helpful in this early phase following diagnosis. Transition periods, such as the beginning and the end of treatment, are a bit more diffi­cult to handle. Try to cut yourself some slack. The good news is there are a number of coping strategies that can help you manage distress as you navigate this journey.

Outside of the doctor’s office or treatment center, try your best to keep up your normal daily routine.

Author of Article photo

Dr. Alexandra Gee

Trust in Yourself
First, think about what has gotten you through difficult times in the past. Trust in your own ability to cope with a situation. Chances are you have successfully traversed rough terrain before, perhaps without giving much thought to how you did it at the time. Reflect on those tough times and try to remember what you did in order to come out on the other side. What helped you get through it? Did you lean on a family member or friend when you needed to talk things through or just needed someone to be present? Maybe you gathered informa­tion and you felt empowered by the knowledge you acquired. Or you may have participated in activities that helped you feel relaxed or centered. The coping mechanisms that have worked for you in other situations will likely work again, even if a cancer diagnosis feels monumental compared to the obstacles you’ve handled in the past.

Author of Article photo

Dr. Teresa Deshields

Lean on Others
Next, turn to your support system. An important tip – you are allowed to be picky with whom you choose. Surround yourself with people who make you feel relaxed and supported.

Seek Out Normalcy
It can also be beneficial to maintain a routine when­ever possible. Granted, you’ll have more appointments to accommodate in your schedule, but try to think of them as minor parts of your day. Outside of the doctor’s office or treatment center, try your best to keep up your normal daily routine. A sense of nor­malcy can go a long way in helping to ease distress.

Ask for Help
Finally, know that it’s OK to ask for a little bit of extra help when you’re dealing with distress caused by a cancer diagnosis. Whether you seek assistance from a loved one, a spiritual or religious leader, a support group, or a mental health professional, it’s good to have someone in your corner. Ask your treatment team about supportive services in your area, and don’t be shy about taking advantage of them.

♦ ♦ ♦ ♦ ♦

Dr. Alexandra Gee is a postdoctoral fellow, and Dr. Teresa Deshields is a licensed clinical psychologist, both at the Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine in St. Louis, MO.

This article was published in Coping® with Cancer magazine, May/June 2015.

Major League Survival

Finding My Identity in the First Inning after Cancer

by Dave Dravecky

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Battling cancer is hard enough, but for many survivors, of which I am one, cancer leaves us with an even tougher battle to fight. That battle has to do with our identity.

When I look back on my life, discovering who I am has been an ever-evolving journey. I believe I am not alone in that. In fact, I know that while we may be on different paths and experience different life-changing events, many of us find ourselves on the same quest.

I have evolved from a son and a brother to a hus­band and father. And I have been a student and an athlete – first an amateur and then a professional. I have loved, accepted, and transi­tioned with every new identity. But my first major identity crisis – asking God, “Who am I now?” – came when I lost my arm to cancer.

Battling cancer is hard enough, but for many survivors, of which I am one, cancer leaves us with an even tougher battle to fight. That battle has to do with our identity. When the storm of cancer sweeps into our lives, the landscape can change dramatically. Everything familiar may be wiped away or changed beyond recognition. We may have lost the rela­tionships, skills, and resources that had been an essential part of who we are and had given us a sense of joy and purpose in living. So some of us journey out of cancer as very different people.

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Dave Dravecky

When I lost my arm, I lost my career, my position, and my sense of identity. All I had ever done was play baseball. Who was I if I was not a pro baseball player? It was a long, painful, and difficult journey to identify the real Dave Dravecky.

For me, the journey did not begin right away. Partly because I didn’t take the time to mourn the loss of my arm. That would have been the emotionally healthy thing to do, but oh no, not me! Instead, I had a cavalier attitude about it. Before the amputation, I jokingly waved my left arm in the air, pretend­ing it was saying goodbye. After the amputation, I thrust myself into travel and speaking engagements to prove that I could overcome this loss.

The truth was I didn’t want to face the pain and the reality of the loss or the fact that I was a changed person. However, the questions of who I was and where I was supposed to go from here could not be held at bay any longer. My wife, Jan, continued to say to me, “The only way to heal from the pain of losses suffered is to go through the pain. There is no way around it. You can stuff it, and you can dodge it. But eventually you’ll have to face it.”

When I started to take that first step by asking those questions instead of ignor­ing them, I was surprised to dis­cover that so much of my identity was wrapped up in that arm and what it had been capable of doing. My arm had brought me joy, worth, and status, and had provided an unbelievable career and wonderful lifestyle. I lost all of these when I lost my arm. Until I came face to face with the deeper losses that came with the physical loss of my arm, I was awash in a storm of denial and depression.

If I have learned anything through the loss of my arm, it’s that ignoring the loss and not taking the time to mourn that loss was a huge boulder on my path to discovering who I truly was. So step one for me was to remove that boulder by honestly facing my pain and loss and then moving on with God.

♦ ♦ ♦ ♦ ♦

In 1988, duing his seventh year in Major League Baseball, San Francisco Giants pitcher Dave Dravecky was diagnosed with a cancerous desmoid tumor in his pitching arm, which eventually had to be amputated. Though the loss of his arm ended his base­ball career, Dave found a new calling as a motivational speaker. He penned the books Comeback and When You Can’t Come Back, and he, alongside his wife, Jan, founded Endurance, a nonprofit organization that offers resources for people facing serious illness, loss, or de­pression. Learn more at endurance.org.

This article was published in Coping® with Cancer magazine, May/June 2015.

HELP! My Skin’s Not the Same after Treatment

by Carol R. Drucker, MD

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“My skin just hasn’t been the same since chemo­therapy.” I hear this comment frequently from cancer survi­vors, who often follow the statement with a list of the changes they’ve ob­served: drier, more sensitive skin; brittle nails; hair alterations; skin discoloration; and more. Survivor skin can be different from pretreatment skin in many ways. Some skin changes will resolve with time; others may not.

Rest assured, however, that post-treatment skin changes are common. Many cancer survivors come out of treatment with alterations to their birthday suits.

Cancer Treatment vs. Your Skin
A common complaint among survivors is that their skin is drier after treatment. Chemotherapy, radiation, and hormone therapy all can alter your body’s oil and sweat gland functioning, sapping your skin of moisture. Dry skin is more sen­sitive and less elastic than hydrated skin, so it feels thinner and is more prone to tearing, bruising, and splitting.

Sometimes, one area of skin receives more damage than the rest. A prime example being skin that’s exposed to radiation. The affected area is more sen­sitive and prone to itch. Irritating factors like dry weather, certain cleansers, and new clothes can cause this portion of skin to break out in a rash while the surrounding skin remains unaffected.

The appearance of a rash can be alarming. However, keep in mind that some areas of skin may be less resilient than others after treatment, and it is unlikely that your skin irritation is a sign of something more serious, like cancer recurrence in the skin. Though that’s not to say you shouldn’t discuss skin discomfort or other concerns with your doctor.

Your skin is more sensitive now
than it was before treatment.

Author of Article photo

Dr. Carol Drucker

With radiation therapy, your skin will probably go through several stages of change. During treatment, you may experience sensitivity, redness, and burning in the treatment area. As your skin heals, discoloration can persist. Over time, you may notice dilated blood vessels, and the affected skin may become shiny and firm. In the long term, skin that has been exposed to radiation is more susceptible to developing growths and skin cancers, so it should be checked regularly. Simi­larly, radiation can leave skin vulnerable to discoloration, which warrants regular skin checks as well.

Not all skin changes are bad; some can be a bonus. Certain chemotherapies react with spots of precancerous sun damage in the skin. What appears to be a rash could actually be the rejuvenation of sun-damaged skin.

Give Your Skin a Fighting Chance
You may not be able to completely avoid treatment-related skin changes, but you can manage them by caring for your post-treatment skin.

To start, be aware that your skin is more sensitive now than it was before treatment. For dry skin, unscented creams and ointments are often more effective than lotions. Avoid scratching dry, itchy skin. Instead, stop the itch with an over-the-counter itch cream. Keep damp washcloths in the freezer that you can apply to the affected area; the cold can help stop a sudden itch attack.

Be gentle with your skin when bathing. A hot shower feels so good, especially after a long day, but the hot water actually increases the dry- ness and itchiness of your skin. Take warm showers instead, using gentle cleansers.

Use caution when trying any new skin product, fragrance, or procedure. If your skincare routine previously included products with harsh or abra­sive ingredients, reintroduce them into your routine one at a time. Start by adding one step back into your skin regimen for a week or two before adding another step.

Be careful if hair removal is part of your grooming routine, especially if you wax. Areas of your skin may be more sensitive than they were in the past. Additionally, newly resurfacing hairs can irritate the skin as they regrow. This irritation looks similar to acne, but it’s not, so don’t use harsh treatments meant for oily, acne-prone skin. Instead, man­age ingrown hairs with gentle cleansing and mild exfoliation.

During and after treatment, your skin may be more sensitive to the sun than ever. Before going outside, shield yourself from the sun’s rays with protec­tive clothing and sunscreen. The tincture of time is the real solution to treatment-related skin changes. Your skin has endured a barrage of insults through treatment, so it may take a while to heal. Until your skin returns to nor­mal, or to its new normal, pamper yourself by taking care of your skin.

♦ ♦ ♦ ♦ ♦

Dr. Carol Drucker is a professor of dermatology at the University of Texas MD Anderson Cancer Center in Houston, TX. She specializes in skin cancers and cancer-related skin conditions.

This article was published in Coping® with Cancer magazine, May/June 2015.

Quiet, Please ...

It’s Time to Connect with Your Soul

by Elizabeth Lenegan, PhD

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Bombarded – that’s the word survi­vors often use to describe what happens to you right after finding out you have cancer. You barely have time to absorb the shock of the diagno­sis before you’re hit with complicated medical information and instructions, a calendar full of medical appointments, and a cascade of phone calls.

In all the turmoil, and with most of the emphasis on physical treatment and recovery, it can be easy to overlook your spiritual needs. Yet research shows that people with cancer are more likely to wrestle with spiritual issues than are people with other chronic illnesses. Christina Puchalski, MD, MS, founder and director of the George Washington Institute for Spirituality and Health in Washington, D.C., points out that a cancer diagnosis “changes the lives of patients forever … triggering deep questions of meaning and purpose,” which can result in spiritual distress.

Why is this a problem? Be­cause spirituality enables us to reach beyond the temporary and sometimes-shallow aspects of our lives to our deep and enduring core – our soul. It defines what makes us human, what our life is all about, what connects us to other people and the world as a whole. For some, it can mean a connection with God or a higher power.

Spirituality enables us to reach beyond
the temporary and sometimes-shallow aspects of our lives
to our deep and enduring core – our soul.

Author of Article photo

Dr. Elizabeth Lenegan

When life moves along without inter­ruption, the demands of our day-to-day activities can distract us from our need to set aside time for nurturing our spirit, nourishing our soul, and thinking about life’s most important questions. Illness forces us to stop and do just that.

When cancer puts the brakes on your normal routine, spending time in spiritual practices can heal your soul and reduce stress. It can also provide physical benefits; studies show that spiritual practices can actually lower your blood pressure, decrease your risk of heart disease, and lead to better control of nausea and pain.

Whether you’re experiencing spiri­tual distress or you’re looking for new ways to tap into your spirituality, one of the most powerful ways to connect with your spirit is through quiet reflec­tion. (Think of it as a visit to an oasis of peace far removed from our noisy, fast-paced world.) If you don’t have time for quiet reflection every day, aim for at least a day or two each week. Even 10 minutes of quiet time can re-energize your soul. Here are a few suggestions that might help as you be­gin to practice quiet reflection:

bullet Find a place where you will not be disturbed; for example, a chapel, a peaceful area of a park, or a room in your home where you can be alone.
bullet Eliminate distractions. Turn off the TV, radio, and cell phone. Silence the ringer on your landline phone. Ask family and friends to give you the time you need to be alone.
bullet During your quiet time, avoid think­ing about chores, obligations, or specific worries. Instead, focus on answering the following questions:

Beyond my job, my family ties, and my hobbies, who am I?
What is the meaning of life? What is the meaning of my life?
What things are most important to me?
What do I hope for?
What makes me happy?

Whether you were diagnosed with cancer only yesterday or many years ago, finding quiet time to reflect on your life and connect with your spirit can help relieve stress, give you strength to cope with life’s challenges, and help you look toward your future with optimism and hope.

♦ ♦ ♦ ♦ ♦

For the past 15 years, Dr. Elizabeth Lenegan has served as director of pastoral care at Roswell Park Cancer Institute in Buffalo, NY. She manages a staff of chaplains and vol­unteers who work with survivors and their families, and coordinates retreats for survi­vors and caregivers.

This article was published in Coping® with Cancer magazine, March/April 2015.

Lost Appetite?

Satisfying Solutions for Getting the Nutrition You Need

by Elise B. Cushman, MS, RD, CSO, LD

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Elise teaches survivors how to whip up healthy, flavorful meals during a cooking demonstration.

As important as it is to eat well during cancer treatment, for many survivors, finding the motivation to do so can be challenging. Cancer can put you in a hypermetabolic (fuel-burning) state that can rob your muscles of pro­tein and cause weight loss, depleting your stamina and leaving you easily fatigued.

Furthermore, chemotherapy drugs target rapidly developing cancer cells. However, rapidly growing healthy cells can get caught in the crossfire, resulting in unpleasant side effects, including changes in taste and smell. These taste and smell alterations can diminish your appetite, making it hard for your body to get the nutrients it needs. So what can you do to overcome these barriers to good nutrition?

When Food Doesn’t Taste the Same
Due to treatment-related taste changes, your favorite foods may now be unappealing. If food no longer tastes the same, try following these recom­mendations:
⇒ Clean the Slate Brush your teeth before you eat. Then rinse your mouth with a baking soda and salt-water solu­tion made by mixing one teaspoon of salt and one teaspoon of baking soda into a quart of water.
⇒ Mind the Salt Iodized salt can impart a metallic taste. Try using kosher or sea salt instead.
⇒ Spice It Up! Adding seasonings and sauces can help awaken foods that taste bland during treatment. Try hot sauce, chili powder, vinegar, or a splash of citrus to cut through the flavor doldrums. Garlic, chives, basil, rosemary, or other fresh herbs can help liven up meals as well. (A word of caution: stick to a bland diet if you have mouth sores.)
⇒ Metal Mouth? Eat with plastic uten­sils to reduce metallic taste. Cast iron naturally imparts metallic flavors onto foods, so cook in glass or ceramic casserole dishes in­stead of metal pots and pans. Sucking on sugar-free hard candy in between meals can also help counteract metallic taste.
⇒ Prep Your Protein Red meats tend to taste metallic or just off in some way during treatment. Stick to more neutral protein choices, such as cheese, eggs, beans, tofu, chicken, and pork. Another option is to marinate your meat. Try a simple solution of juice or vinegar, olive oil, fresh herbs, garlic, salt, and pepper. Or you can save time by using your favorite vinaigrette or Italian dressing as a marinade.
⇒ Sweeten Up If food tastes bitter or salty, sprinkle in a pinch of sugar to make it more pleasing to the palate.

When Scents Stifle Your Appetite
If food odors induce nausea or cause you to lose your appetite, give these suggestions a try:
⇒ Put a Lid on It If shakes and liquids are easiest for you to swallow but you’re put off by the smell, put them in a cup with a lid and sip through a straw.
⇒ Send Off Scents If the slightest sniff of food sends you running from the kitchen, use a fan and keep the hood vent on when cooking on the stove. Cook with the windows open, and keep food covered. If possible, enlist someone else to do the cooking while you’re in treatment.
⇒ Cool It Down Hot foods smell stronger and can be off putting. Allow food to cool before sitting down to eat, or stick to room temperature or cold foods, such as sandwiches, gela­tin, fruits and vegetables, cheese and crackers, or yogurt.

What to Eat
The American Insti­tute for Cancer Research suggests a plant-based diet that is rich in fruits, vegetables, and whole grains. For protein, choose beans, legumes, poul­try, fish, and low-fat dairy. Limit your consumption of red meat to 18 ounces a week.

When eating full meals becomes challenging due to early satiety, you may be able to tolerate small, frequent meals instead. Eat every two to three hours, and make every bite count by eating calorie-rich and protein-packed foods, such as peanut butter and toast, cheese and crackers, Greek yogurt, or scrambled eggs with cheese. If liquids are easier to tolerate, sip on high-calorie, high-protein shakes throughout the day. With a little ingenuity, and perhaps the help of a dietitian, you can get the nutrition you need to stay strong through treatment.

♦ ♦ ♦ ♦ ♦

Former chef Elise Cushman is a registered dietitian at Dartmouth Hitchcock Medical Center’s Norris Cotton Cancer Center in St. Johnsbury, VT.

For more information on eating well during cancer, and to find a certified specialist in oncology nutrition, Elise recommends visiting OncologyNutrition.org.

This article was published in Coping® with Cancer magazine, March/April 2015.

Be the Author of Your Story

by Rosemary E. Newnham

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Ten years ago, I experienced some sudden, scary changes in my health. I went through nine months of doctor’s appointments and countless blood tests before I learned the cause of these changes. At first, I felt as if my life was orbiting out of control. Then I started writing about it.

On the page, I emerged as a brave, truth-seeking warrior. No longer a scared, wounded victim, I was the au­thor of my own life again.

When you find out you have cancer, it’s normal to feel angry, anxious, de­pressed, disoriented, or all of the above. By writing about how you feel and what you’re going through, you can impose a sense of order on your experiences and take stock of the people around you. Your family members, friends, healthcare team – these are the characters in your stories. They may do funny and heroic and awful things. Writing allows you to process what’s going on in your life and figure out what happens next.

Find the “Write” Setting
Some hospitals offer creative writing groups. Ask a social worker if your hospital has one, and if not, whether he or she knows of any writing groups in your community. You could also regularly meet with a few friends and host your own informal writing group. Or you may feel more comfortable writing privately in a journal. Journaling is a highly portable activity. You can do it in the waiting room or during chemo to help focus your thoughts.

Remember a time when you acted bravely. Write about how it felt.

Author of Article photo

Rosemary Newnham

Ready, Set, Write
If you want to give creative writing a try, here are some tips for getting started:
Sit in a quiet spot with a computer or a pen and paper – whichever feels best.
Set a timer for 20 to 30 minutes, and try to keep writing until the timer goes off.
Recall simple sensory details: the scent of the doctor’s office, the sound of the scanning machine, the feel of a waiting room chair, or even the taste of hospital food.
Be sure to include your feelings. Sometimes writing is easier if you write about yourself in the third person.
Your words might come out as a poem or a rant. Don’t limit yourself.
When you’re done, share your writ­ing with a friend. It can seem scary at first, but sharing your thoughts is a powerful way to help others better understand what you’re going through.

Writer’s Block Be Gone
Still not sure what to write about? It’s easy to feel overwhelmed by the big changes going on in your life. Writing is easier when you take the big picture and break it into smaller, more manageable pieces. Here are some ideas:
Write about the moment of your diagnosis. Where were you? How did you feel? Do you remember the words your doctor said?
Remember a time when you acted bravely. Maybe it’s the moment you walked into your first chemo treatment, or the first time you called your doctor when you noticed a troublesome side effect. How did it feel?
Think of a time you felt down, de­pressed, lonely. What cheered you up? Write a letter to your sad self. Keep it to read when the blues come back.
Imagine having permission to say absolutely anything you want to your doctor, your cancer cells, your family. What would you say? Don’t hold back. Express your gratitude, anger, wishes, and hopes.
Tell the story of a moment when you needed help. How did you get it? Was it difficult to ask for or accept help?
Remember an important decision you’ve had to make since your diagno­sis. For example, deciding which course of treatment you should follow or when you should tell your kids about your diagnosis. How did you make up your mind? If you had it to do over, would you make the same decision?
Picture yourself at some point in the future, be it after completing treatment or just after your next appointment. How do you want to feel? What are you do­ing? Who is with you? It doesn’t matter if your imaginings are “realistic” – indulge yourself with the best pos­sible scenarios.

Writing can help you feel better in many ways: you can write out your bad feelings, re­member the good things that happen, and give life to your hopes for the future. You’ll also have a log of your entire experience as a reminder of how far you’ve come.

♦ ♦ ♦ ♦ ♦

Rosemary Newnham is a medical writer living in New York, NY. She coauthored After Prostate Cancer: A What-Comes-Next Guide for a Safe and Informed Recovery with Dr. Arnold Melman.

For more creative writing resources, Rosemary suggests WritingThroughCancer.com and PoeticMedicine.org.

This article was published in Coping® with Cancer magazine, March/April 2015.

If You Build It …

by Gail Presnell-Jones

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I started my regeneration at Goodwill. No, I didn’t volunteer or utilize their many services; I simply shopped. After a year of battling cancer and an 18-month depression, I realized that I had two choices: I could continue to sit around in my fuzzy bathrobe, waiting for a miracle to lead me back into life, or I could get up, get dressed, and … Well, I wasn’t so sure what should come next, but I decided to go with that sec­ond option anyway. I would get up, get dressed, and take it from there.

The first problem with my plan was that I didn’t have anything to wear that was much of an improvement over my well-worn bathrobe – just a few pairs of jeans and some t-shirts. The second problem was that my budget didn’t allow much room for new clothes. Neverthe­less, like Kevin Costner in The Field of Dreams, I told myself, “If you build it, he will come.” Only I was building a new image for myself, not a baseball field in the middle of Iowa, and “he” referred to my new lease on life.

Years ago, I had worked as a cloth­ing designer, so I felt confident in my ability to separate the wheat from the chaff, so to speak, in the local discount and thrift stores. I took my mission seriously, rarely spending more than 10 dollars on any item and scoring an amazing array of name-brand garments and accessories.

One of my last purchases was a three-strand, shell-disk necklace in a color that can only be described as neon tangerine-pink. It had the potential to be either horrifically gaudy or fantastically over the top. I took my chances, bought the necklace, and went home to find my husband making reservations for a business trip to Charleston, SC. Because our 25th wedding anniversary had re­cently come and gone with little to no fanfare, I decided to tag along.

I packed the necklace.

For three long days, my husband was immersed in meetings, so I took the opportunity to wander aimlessly around the city, enjoying museums, restaurants, and everything else Charleston had to offer. On my second day of sightseeing, I paired my bargain neon necklace with white jeans, a black Kenneth Cole halter-top, a brilliant sunflower-yellow Escada blazer, and dainty bronze sandals. (The total cost of the outfit came in at just under 40 dollars – score!)

Famished from a day of exploring, I waltzed into a local deli, feeling sassy in my second-hand finds and looking for a snack. As I rounded a corner, I came face-to-face with a beautiful, mahogany-skinned older woman who gasped and smiled broadly on seeing me.

“Well, I do love your necklace,” she declared guilelessly.

I sidled up to her. “It’s from Good­will,” I whispered.

“Don’t you go telling that,” she said with a giggle. “You look like a million bucks.”

And for the first time in years, I felt like a million bucks. I thanked the woman for her com­pliment and moved around to the next aisle, clutching the necklace’s clasp at the base of my neck. I so wanted to share something lovely with someone equally lovely – something that, no matter how inexpensive, was a symbol of my survival and my reemergence from the pits of depression. Maybe she, too, would pass it on one day.

It took a moment for me to release the clasp, but I eventually removed the necklace, shoved it into the outside pocket of my purse, and returned to the previous aisle.

“Excuse me,” I alerted my approach to the woman. “Would you do me a favor?” She never hesitated. “Well of course, darling,” she answered.

I took her beautiful, timeworn hand in mine and put the necklace in it, wish­ing that it were made of diamonds. “Please take this,” I said.

She balked, “I can’t take your jewelry.”

“I would be so happy knowing you were wearing it. Please,” was all I could say as I dashed away.

“Well, you are my blessing today,” she called to my back.

“And you are mine,” I whispered. I hope she heard me.

♦ ♦ ♦ ♦ ♦

Gail Presnell-Jones is a breast cancer survivor living in Valrico, FL.

This article was published in Coping® with Cancer magazine, March/April 2015.

Communities to Recognize Cancer Survivors, Raise Awareness on National Cancer Survivors Day® – Sunday, June 7

 

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On National Cancer Survivors Day® – Sunday, June 7, 2015 – cancer survivors and supporters in communities around the world will gather to celebrate life and raise awareness of the issues of cancer survivorship.

On Sunday, June 7, 2015, tens of thousands of people around the world will gather in their local communities to observe the 28th annual National Cancer Survivors Day®. Hundreds of cities across the U.S. and abroad will hold celebrations on this day to honor cancer survivors, to bring attention to the ongoing challenges of cancer survivorship, and to show the world that life after a cancer diagnosis can be fruitful, rewarding, and inspiring.

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 when everyone joins forces to recognize the cancer survivors living in our communities and raise awareness of the ongoing challenges they face. NCSD also provides an opportunity for cancer survivors to connect with other survivors, celebrate the milestones they’ve achieved, and acknowledge the family members, friends, and healthcare professionals who have supported them along the way.

“A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life,” according to the National Cancer Survivors Day® Foundation, administrator for the celebration.

“For the vast majority of survivors, cancer is no longer the automatic death sentence that it was a few decades ago,” says Foundation spokesperson, Laura Shipp. “The reality is that, among U.S. adults, the 5-year relative survival rate for all cancers combined is now approximately 68 percent. In 1987, the year that NCSD began, that number was just 56 percent.

“National Cancer Survivors Day® is an opportunity for cancer survivors to join with each other and celebrate this new reality in cancer survivorship that more people are living longer and better quality lives after cancer than ever before. It is also an opportunity to bring attention to the challenges these survivors face after diagnosis, and sometimes even years after treatment ends.”

NCSD celebrations will be as diverse as the communities where the events are being held. There will be motivational speeches, health fairs, parades, carnivals, block parties, art exhibits, awareness walks, inspirational programs, and more. Cancer survivors will share their unique stories of how surviving cancer has affected their lives. And communities will come together to stand with these survivors and make a commitment to help find ways to lessen the burdens a cancer diagnosis brings.

The National Cancer Survivors Day® Foundation encourages everyone 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. The NCSD website, www.ncsd.org, has everything you need to plan an NCSD celebration.

NCSD started in the United States in 1987, and it is now celebrated worldwide in countries including Canada, Australia, India, South Africa, Greece, Saudi Arabia, Italy, and Malaysia, according to Shipp.

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.

More Americans than ever are surviving cancer. According to the American Cancer Society’s Cancer Treatment & Survivorship Facts & Figures 2014 – 2015, there are 14.5 million cancer survivors alive in the US today, and that number is expected to grow to almost 19 million by 2024. Even though cancer incidence rates are dropping, the number of cancer survivors is rising due, in part, to earlier detection and better treatments. As the number of cancer survivors continues to grow, it will be more important than ever to address the unique needs of these survivors.

Many survivors face limited access to 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 physical side effects; psychological, social, and emotional concerns; and financial hardships.

“To say that surviving cancer is challenging would be an understatement,” says Shipp. “But it is a challenge that millions of people – 14.5 million in the U.S. alone – are overcoming. National Cancer Survivors Day® is a celebration of how far we’ve come in extending life after cancer. However, the NCSD Foundation hopes that National Cancer Survivors Day® also serves as a call to action for more resources, research, and increased public awareness to improve quality of life after cancer.”

The National Cancer Survivors Day® Foundation, along with the NCSD 2015 national supporters Amgen, Astellas, Bristol-Myers Squibb, Coping with Cancer magazine, Genentech, Seattle Genetics, Takeda Oncology, and Teva Oncology, is encouraging a greater commitment to resolving quality of life issues for cancer survivors.

“It’s true that cancer survivors are now living much longer after diagnosis thanks to advances in modern medicine,” says Shipp. “However, long-term survivorship poses its own unique challenges. And we need to do a better job of addressing the hardships cancer survivors face beyond treatment.”

For more information, visit the official website of National Cancer Survivors Day www.ncsd.org, a service of the National Cancer Survivors Day Foundation.

♦ ♦ ♦ ♦ ♦

Actress Valerie Harper is Living Life Fully

… even with a diagnosis of metastatic lung cancer

by Jessica Webb Errickson

Celebrity Cancer Survivor

According to the American Lung Association, every five minutes, a woman in the U.S. is diagnosed with lung cancer. In 2009, beloved tele­vision and stage actress Valerie Harper became one of them. Following surgery to remove a tumor from her right lung, Valerie enjoyed four cancer-free years before learning that not only had her cancer returned, manifesting itself in the tissue surrounding her brain and spinal cord, but this time, it was terminal.

Valerie, well known for her charac­ter Rhoda Morgenstern on the classic Mary Tyler Moore Show and its spinoff, Rhoda, first learned she had cancer after a routine X-ray detected a suspicious spot on her right lung. Having caught it early, her surgeon was able to remove the tumor, along with the top lobe of the affected lung, without the need for additional treat­ment. Once she recovered, Valerie was back to business as usual, even earning a 2010 Tony Award-nomination for her role in the Broadway production Looped.

“The year unfolded, and my doctor was just so thrilled with how well I was doing,” Valerie tells Coping. “I didn’t require any radiation or chemo. So that was great news!”

Valerie remained in good health until early 2013 when the sudden onset of stroke-like symptoms prompted her to seek medical attention. However, a battery of tests revealed that Valerie’s slurred speech and difficulty with re­membering lines from the play she was rehearsing weren’t caused by a stroke. Instead, she was experiencing side effects from a recurrence of lung can­cer to her brain.

"I can't say I've suffered as some have. I've been extremely lucky."

Officially, Valerie was diagnosed with leptomeningeal carcinomatosis, a con­dition caused by the spread of cancer cells to the tissue surrounding the brain and spinal cord (the meninges). The rare diagnosis has caused confusion in the media regarding her type of cancer, but Valerie is quick to clarify that she does not have brain cancer. “It’s lung cancer, but there’s nothing in my lungs,” she says. “However, the doctors found lung cancer cells in my meninges.”

With lepto, cancer cells don’t accu­mulate into solid tumors. It’s terminal, as Valerie explains, “because they can’t get to all the little culprits, the cancer cells, spread throughout my head and up and down my back.” Given the rarity of the condition, her doctors estimated that she would only have three to six months to live.

Despite a grim prognosis, the sea­soned performer, who’s just as vivacious as the TV character that made her famous, hasn’t shown signs of slowing down anytime soon. With unwavering positivity, she’s survived two years beyond her doctors’ best predictions and has avoided any pain associated with the condition. “I can’t say I’ve suffered as some have,” she says. “I’ve been extremely lucky.”

Though she’s living with terminal cancer, it isn’t stopping her from living a full life. Armed with the support of her medical team and her husband, Valerie receives targeted therapy and makes use of complemen­tary therapies, such as acupuncture and meditation. With her humor intact, she has continued to work steadily, performing on Broadway, making guest appearances on TV Land’s Hot in Cleveland and Hall­mark’s Signed, Sealed, Delivered, and starring in the UP original movie The Town That Came A-Courtin’. And at 74 years old, Valerie shined on ABC’s Dancing with the Stars, proving that nothing can stop her from living her best life.

“I believe in visualization of winning. I imagine myself kicking the cancer cells on their little butts right out of my body,” she says with a laugh. On a more serious note, she adds, “It’s not so much about resist­ing death. It’s accepting that it’s there and then making sure that I’m living to my utmost potential.”

She’s defied the odds, but sur­vival isn’t enough for the showbiz veteran. Valerie has teamed up with the American Lung Association as a spokesperson for their LUNG FORCE initiative to promote education and raise awareness about the often-overlooked disease. “I didn’t know that I, as a nonsmoker, could even get this disease. But I’ve learned that if you have lungs, you’re at risk,” Valerie says. “I’m devoting myself to speak­ing out as much as I can to educate women so they know that this is a real threat to their health. Anyone can get lung cancer, and no one deserves it.”

♦ ♦ ♦ ♦ ♦

Learn more about the LUNG FORCE initiative and how you can get involved at LungForce.org.

This article was published in Coping® with Cancer magazine, May/June 2015.

10 Things I've Learned in 10 Years

by Emily Miller Land

Inspiration image

Emily, pictured with her two children, celebrates more than a decade of survivorship.
(Photo by Peter Barta, © St. Jude Children’s Research Hospital)

More than 10 years have passed since I beat cancer as a teenager. Reflecting on my life from diagnosis to today, I came up with 10 things I’ve learned and embraced through my journey. These thoughts are applicable to anyone who has gone through cancer treatment or is facing a serious health challenge.

1. As unimaginably hard as this may be to believe, cancer can do more good than harm. Your experience can make you a stronger person, bond you to your fellow survivors, heal your spirit, and remind you to focus on the things and people in your life that are important to you.

2. Even though I never want to have to fight cancer again, I know that I could if I ever had to. Cancer gave me more strength than it took away.

3. Most people probably interpret Christina Aguilera’s “Fighter” as a song about the end of a tumultu­ous relationship. For me, it holds a broader meaning. Christina sings, “Makes me that much stronger, makes me work a little bit harder, makes me that much wiser – thanks for making me a fighter.” Every survivor should listen to the song and consider its message of going through a difficult situation only to come out stronger on the other side.

4. In some situations, it’s OK to say, “This is not a big deal,” and let it go. There is peace in perspective.

5. Cancer exposes you at your weak­est, even if you’re the only one who sees it. You can use this as a chance to rebuild yourself from the in­side out, beginning with an even stronger foundation.

6. Faith is part of the fight. Whether it lies in the doctors, the medicine, the research, a higher power, or your­self, faith is a necessary component of beating cancer. Find it.

7. Coffee smells beyond horrible when you don’t have nose hair, and cayenne pepper isn’t the least bit spicy to someone who lacks freshly regenerated taste buds. Oh, and yes, your eyebrows are actually functional – an often overlooked oddity of the human body, until you don’t have any.

8. Something still feels right and refreshing about shampooing and conditioning a bald head, especially when everything else in your world feels wrong and out of place.

9. People are often in awe of survi­vors, and although survivorship is a badge that we carry with immense pride, being undetectable as a survivor for the first time in a sea of normality is often our proudest moment. We are not our cancer, but we are what cancer has made us. We only want to be seen as who we are, not who we were.

10. When it comes to the human life cycle, you only get to go around once. But if you do it right, once is enough. Don’t just exist – live the life you’ve fought so hard to save.

♦ ♦ ♦ ♦ ♦

Emily Miller Land is a mother of two and an osteosarcoma survivor.

This article was published in Coping® with Cancer magazine, March/April 2015.

Finding Comfort in the Midst of Fear

by Deborah Seagull, PhD

Wellness image

Many survivors worry about can­cer recurrence every day, which isn’t sur­prising. A cancer diagnosis can rupture your sense of security. It seems to make no difference if your can­cer is early or late stage, once you’ve been diag­nosed with the disease, it can be difficult to control your fear.

Before cancer, you may have lived in denial about your mortality. Even though we all know that we will die someday, we don’t usually think about it. We do other things. We live our lives. But a cancer diagnosis snaps you back to reality. Once your sense of security has been com­promised, it can be hard to get back to business as usual. You may find it difficult to enjoy day-to-day ac­tivities and live a fulfilled life because you’re so preoccupied with negative thoughts and fears about the future. All you want is to go back to being the “old you.” The truth is you can never go back to being the person you were before cancer. Your life and identity have forever changed. This can be dif­ficult to accept, and you may be overwhelmed with worry that your negative thoughts and fears will never go away. But there are some things you can do to manage your fear.

The truth is you can never go back to being the person you were before cancer. Your life and identity have forever changed.

Author of Article photo

Dr. Deborah Seagull

The first thing you need to realize is that most people with cancer – no matter what stage or type – share this sense of fear. You are not alone. Fear is a natural response to something that is frightening or potentially threaten­ing. Instead of trying to force this feeling away, tell yourself that it’s OK to feel this way. Be understanding of what you have been through and what you are facing. Fear tends to grow when you dwell on it. Taking an honest look at your situation will help you move forward.

Once you have started to accept the reality of your new normal, and the fact that a degree of fear is going to be part of it, you can begin to seek the antidote to fear: comfort. When we are fearful, our natural reaction is to fight or flee, but sometimes we need to suppress our impulse to either put up our dukes or run for the hills. Instead, gently remind your­self that anyone in your situation would feel this way. Then focus on finding what brings you comfort. Perhaps you can share your feelings with a friend, take a walk outside, get a massage, or enjoy a relax­ing bath. It’s easy to resist seeking comfort when you’re anxious or afraid, but it’s crucial that you follow through in caring for yourself.

Since finding comfort is vital to alleviating fear, you may also want to consider reaching out to other survi­vors, perhaps in a cancer support group. Sharing your fears and connecting with others can make you feel less alone.

You can manage your fears on a practical, hands-on level as well. Remind yourself of all the things you’re doing to safeguard your future. Write them down. Your list may include eating well, exercising, keeping your follow-up appointments, and setting goals for the future. It’s quite common to worry that any twinge or ache that you get is cancer related, even if it’s not. Being assertive with your doctor and asking any ques­tions to mitigate unfounded fears may also be helpful.

Taking measures to reduce your fears is an important step in improving your well-being and conquering wor­ries about recurrence. Although you may feel fearful from time to time, rest assured that you can find peace and joy in your life no matter what the future may bring.

♦ ♦ ♦ ♦ ♦

Dr. Deborah Seagull is a licensed clinical psychologist who consults for the Abramson Cancer Center in Philadelphia, PA. She has a private practice in Center City Philadelphia where she works intensively with cancer survivors and their families to improve coping and overall well-being.

This article was published in Coping® with Cancer magazine, March/April 2015.

A Race to Remember

by Khevin Barnes

Inspiration image

Running is one of cancer survivor Khevin Barnes’ greatest joys.

When I was 12 years old, my family lived in a quiet neighborhood in Riverside, CA. I wasn’t very good at your typical school sports like baseball and football, but I was good at running. And I loved it. I loved it so much that it became one of my life’s greatest joys.

Back then, I’d organize regular weekend races with my friend Dennis Potter, who lived down the street from me. We didn’t hang out together often, but we met almost every weekend for our race around the neighborhood. The two-mile course took us along the streets around my house, and the finish line was in a vacant lot right next to old Mr. Stringfellow’s expansive yard.

Something of note about this little competition is that I always won. Always. Dennis would huff and holler, trying his hardest to beat me, but in the end I always, without exception, won the race. In the last 50 yards, without fail, I would surge ahead with great confidence to victory. Dennis, ever frustrated by his string of losses, would shake his head and mutter under his breath that he’d “get me next time.”

Our friendly competition went on for many months, until one day when my father announced that our family was moving to Newport Beach. I would be saying goodbye to my school, my friends, and my weekend race against Dennis Potter.

Dennis and I met one last time be­fore I moved. Our final race went as expected, with me leading the way. But as we rounded the last corner, with about 100 yards to go, a spontaneous and startling thought entered my mind and shook me from head to toe. With the finish line in my sights, the victory dance that had already begun in my mind was shoved aside and replaced with an image of Dennis Potter win­ning the race, a thought that until that very instant seemed impossible. I always won. In order for him to finish first, I would have to throw the race. That would be crazy, right? Then I wondered, what would hap­pen if I let him win – just this once? I knew of course that he would gloat and puff up with pride, just as I had for so many months. I also knew I was the faster runner – no doubt about it – and winning this race would further prove that point. But what if there was something even more important to be gained from not winning?

These thoughts raced through my brain as fast as my footsteps were land­ing on the hot pavement. I had only seconds to process this crazy idea, but in those few seconds, I experienced a feeling that was even more exhilarating and satisfying than any I ever got from winning. I was, perhaps for the first time in my young life, feeling a touch of compassion for another human being.

With the finish line in view, I sud­denly pulled up with one leg, pretending to lose my balance for a moment. I cursed out loud and kicked up a little puff of dust as Dennis, savoring the sweet taste of victory, shot by me like a conquering gladiator and crossed the finish line with outstretched arms.

“I did it! Oh my God, I did it!” he shouted. I pretended to be disappointed in myself but congratulated him on his well-deserved win. To my surprise, Dennis didn’t celebrate his victory alone. Instead, he ran over to me, grabbed my shoulders, and pulled me close in a sweaty embrace. I can still see the pride on his face and the excitement in his eyes as we hopped up and down, sharing in his dance of glory.

Now, 64 years old and battling breast cancer, I reflect on the many gifts I’ve received in my life. Though the memory of running with Dennis has faded, the feeling I got from watching and join­ing him as he celebrated his great achievement is just as strong today as it was then.

I don’t think we have one-sided lessons in life. Just as a broken bone heals stronger at the point of fracture, every defeat allows us to grow. I be­lieve that each time my cancer knocks me back a few steps, the reverence that I have for life and its endless lessons grows. And I know now that on that race day so many years ago, I needed to lose just as much as Dennis Potter needed to win.

♦ ♦ ♦ ♦ ♦

Khevin Barnes is a male breast cancer survivor living in Vail, AZ.

This article was published in Coping® with Cancer magazine, March/April 2015.

Questions and Answers about Lymphedema

What It Is, Who’s at Risk, and What You Can Do about It

by Stanley G. Rockson, MD, FACP, FACC

Photo by Cancer Type

Lymphedema is the accumulation of a protein-rich body fluid called lymph, typically in one part of the body, when the lymphatic system for fluid transport is damaged. For example, if lymph nodes are removed from the armpit region during breast cancer treatment, lymphedema can occur in that arm.

Why is the lymphatic system important?
The lymphatic system is part of the im­mune system. It fulfills the function of immune trafficking, the process whereby infection-fighting cells can be mobilized to the tissues that require assistance. When the lymphatic system is compro­mised by surgery, trauma, or improper development, the affected part of the body is prone to recurrent infection.

How does surgery affect my risk of lymphedema?
Your risk of developing lymphedema is chiefly aligned with lymph node removal. For instance, individuals who have undergone lumpec­tomy without lymph node removal are at such low risk that it is impossible to estimate. However, sentinel node removal, a technique that involves the removal of no more than four lymph nodes, increases the risk of develop- ing lymphedema to about 6 percent. If you have more than four lymph nodes removed, your risk rises to 15 to 25 percent.

Does radiation increase the risk of lymphedema?
Yes, radiation alone can traumatize the lymphatic system just as much as surgery can. In general, the risk of lymphedema following radia­tion therapy is roughly equal to that of axillary lymph node dissection. More­over, radiation therapy increases the lymphedema risk associated with sur­gery if both treatments are performed.

Author of Article photo

Dr. Stanley Rockson

If I’ve had lymph nodes removed under one arm, do I have to worry about the lymph nodes in other areas of my body?
No. The lymphatic system is present throughout the body, but lymphedema affects only the part of the body that’s been treated.

Do I have to worry about lymphedema for the rest of my life?
A better way to phrase it is you’ll have to stay vigilant. The primary risk for lymphedema de­velopment is in the first year following surgery or radiation therapy, when 90 percent of lymphedema cases occur. By the end of three years, 95 percent of lymphedema cases will have appeared. If you don’t have lymphedema after three years of vigilance, the risk remains but is quite small. If you take the proper precautions and watch out for signs of lymphedema, your risk will remain relatively small.

Is it safe to exercise after cancer surgery?
While exercise is beneficial in the long run, it’s important to give your body adequate time for healing after surgery. In general, for the first three to four weeks following surgery, you should remain relatively inactive. After that time, you can slowly and progressively increase your activity. Your doctor can give you specific guidelines based on your condition.

What about exercise during radiation therapy?
You can expect a certain amount of inflammation related to the radiation, and you need to avoid over-taxing your lymphatic system. Accordingly, it is reasonable to take it easy during radiation.

Prior to my cancer diagnosis, I led an active lifestyle. Now I’m worried that my former activities could cause lymphedema to emerge. What should I do?
As a cancer survivor, you must enjoy the gift of life. This means not placing boundaries on your definition of living well. With certain activities, there is a small, finite risk of lymph­edema appearing for the first time if cancer treatment has affected your lymph nodes, or of lymphedema becoming worse if you already have it. However, with the appropriate precautions, those risks remain quite small.

You should weigh the risk-to-benefit ratio of each activity you’re interested in. Yes, there is some risk of lymphedema with activities like surfing or rock climb­ing, for example, but you have to weigh the importance of those activities in your life against the risk involved in continuing them.

With or without risky activities, appropriate treatment is essential if lymphedema appears. It’s important to use the compression garment that is provided to you (particularly during activities that pose theoretical risk) and to watch for changes in the at-risk limb. Take precautions against infection when you have breaks in your skin, and seek medical attention early if you notice any skin changes. When you go outside, put on a sun block, because sunburn can aggravate lymphedema. Be careful when you’re working in the kitchen. When you’re in the garden, wear gloves to avoid cuts and scratches. Talk with your doctor about any specific guidelines you should follow, but in general, you should be able to do what you want to do and go where you want to go as long as you’re careful.

♦ ♦ ♦ ♦ ♦

Dr. Stanley G. Rockson is the Allan and Tina Neill Professor of Lymphatic Research and Medicine at Stanford University School of Medicine in Stanford, CA. He is a mem­ber of Lymphatic Education & Research Network’s Scientific/Medical Advisory Council.

The Lymphatic Education & Research Network is a nonprofit organization whose mission is to fight lymphedema and lymphatic disease through education, research, and advocacy. Learn more at LymphaticNetwork.org.

Reprinted with permission from LymphaticNetwork.org © 2015 Lymphatic Education & Research Network.

This article was published in Coping® with Cancer magazine, March/April 2015.

RX for a Good Night’s Sleep

by Jeanne Erickson, PhD

Wellness image

Imagine waking from a restful night of sleep feeling refreshed, rejuvenated, and ready to start the day. If you’ve spent countless restless nights tossing and turning, this may seem like an unattainable luxury. But it doesn’t have to be.

Many of us simply don’t get enough sleep. We’ve adopted lifestyle habits that diminish our quality of sleep, and we often sacrifice the amount of sleep we get by extending our daytime ac­tivities well into the nighttime hours. Add a cancer diagnosis to the equation, and you’re faced with a bevy of chal­lenges to getting an adequate amount of quality sleep.

Why Sleeping Well Matters
In gen­eral, most adults need seven to nine hours of continuous, uninterrupted sleep each night. Insufficient sleep can lead to reduced daytime alertness, memory problems, irritability, and poor decision-making. Over time, poor sleep may contribute to weight gain, an in­creased incidence of diabetes, and a higher risk of death associated with heart disease and other illnesses. On the other hand, getting an adequate amount of restorative sleep promotes energy, as well as optimal mental and physical health and safety.

In general, most adults need seven to nine hours of continuous, uninterrupted sleep each night.

Author of Article photo

Dr. Jeanne Erickson

How Cancer Can Affect Your Sleep
Side effects of cancer and its treatment can affect both the quantity and quality of your sleep. Physical side effects, such as unrelieved pain and shortness of breath, can make it difficult for you to find a comfortable sleeping position. Likewise, emotional side effects like worry and anxiety can make it difficult for you to fall asleep and stay asleep. Other factors like early-morning ap­pointments, overnight hospitalizations, or any change in your normal routine can cause problems by knocking your usual sleeping schedule out of balance.

What You Can Do about It
If you’re having trouble sleeping or you don’t feel rested when you wake, a number of strategies can help improve your sleep quality and daytime functioning.

♦ Make getting a good night’s sleep a health priority.
Treat sleep with as much importance as you do taking medication on time and getting proper nutrition. This may mean you’ll have to cut some daytime activities short or eliminate them altogether to get the seven to nine hours of sleep your body needs each night.

♦ Establish good sleep hygiene.
To do this, you’ll need to develop habits that promote good sleep, such as going to bed and waking up around the same time each day. Avoid eating large meals, drinking alcohol or caffeinated beverages, and using nicotine close to bedtime. You should also avoid stimu­lating activities, such as playing games in front of a bright computer screen, before bed. Use your bed for sleeping – not for watching television or using the computer – and keep your bedroom quiet, cool, and dark to create a good sleep environment.

♦ Stay active during the day.
Stay as mentally engaged and physically active during the day as possible so you’ll be more inclined to relax at bedtime. Aim for 15 to 30 minutes of physical activ­ity each day (with clearance from your doctor), as well as brain-stimulating activities, such as crossword puzzles or computer games, to keep both your body and your mind energized. Try to avoid daytime naps. However, if a nap is needed, limit napping to 45 minutes or less; otherwise, you may have a harder time getting to sleep at night.

♦ Talk to your healthcare team.
Alert your doctor if you’re experiencing sleep disturbances. Certain medications may improve your quality of sleep, but you and your doctor should measure the benefits of taking a sleep aid against its possible side effects. If you have a more serious sleep issue that is unrelated to cancer, such as sleep apnea, your doctor might refer you to a sleep specialist who can conduct a thorough assess­ment of your condition and pro­vide you with a sleep-management plan.

As a cancer sur­vivor, you need the best quality sleep possible. By making sleep a priority and adopting some simple lifestyle habits that pro­mote good quality sleep, you can look forward to enjoying the benefits of rest­ful nights and refreshing mornings.

♦ ♦ ♦ ♦ ♦

Dr. Jeanne Erickson is an assistant professor at the University of Wisconsin–Milwaukee College of Nursing. An oncology nurse for more than 30 years, Dr. Erickson works to improve the way survivors manage the troubling side effects of cancer and its treatment.

For resources to help you sleep better, visit the website of the National Sleep Foundation, SleepFoundation.org.

This article was published in Coping® with Cancer magazine, March/April 2015.