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Cancer Fatigue:

Strategies to help you cope

by Ellen Manzullo, MD, FACP

Fatigue is one of the most com­mon and distressing symptoms experienced by cancer patients and survivors. For some people, fatigue persists even years after completing treat­ment. Cancer-related fatigue is different from the fatigue we all experience in daily living. It is usually more severe, lasts longer, and can have a significant impact on your day-to-day life. Even simple activities like eating, bathing, talking on the phone, and grocery shopping can be difficult when you are experiencing cancer-related fatigue. In addition, the fatigue is often not re­lated to recent activity, and normal rest might not help you feel more energetic.

Moreover, cancer-related fatigue is more than just a physical side effect. The fatigue can also be mental, as well as emotional. Those with mental fatigue may have trouble concentrating, per­forming simple mental tasks, and even reading a book. People with emotional fatigue may feel more irritable, anxious, or impatient. This, in turn, may cause difficulty in relationships with family and friends.

Many different factors can contrib­ute to cancer-related fatigue. It can be caused by the cancer itself, or by cancer treatments (chemotherapy, radiation treatment, surgery, stem cell transplant, immunotherapy). Cancer-related fatigue may also be a sign of an undiagnosed medical condition, or one that is being inadequately treated. For example, heart disease, anemia, hypothyroidism, and sleep disorders (like sleep apnea) can all contribute to fatigue, as can pain, depression, and anxiety. Fatigue may also be triggered or exacerbated by certain medications (such as those used to treat pain, depression, anxiety, and nausea), as well as by what you eat.

When possible, delegate chores, such as strenuous housework, shopping, and laundry, to others.

For most people, cancer-related fatigue has more than one cause. And while the best way to manage fatigue is to treat the underlying cause, that can be difficult to pinpoint in cancer survi­vors. However, all hope is not lost. These fatigue-busting strategies can help you combat your cancer-related fatigue, no matter what the cause.

♦ Energy Conservation
If you are ex­periencing cancer-related fatigue, there are many things you can do to con­serve your energy. First, plan your most important activities for times of the day when you have the most energy. Routine tasks can be scheduled throughout the week. It’s important to pace yourself and schedule periods of rest. When possible, delegate chores, such as strenuous housework, shopping, and laundry, to others. At work, try to arrange your environment to conserve your energy, and plan your most strenuous tasks during times of peak energy.

♦ Sleep Hygiene
A lack of good quality sleep can contribute to fatigue. However, you can take some simple measures to help you sleep at night. During the day, try to limit naps. If you do nap, try not to sleep for longer than 30 minutes. Make sure to exercise at least two to four hours before bedtime to give yourself time to recover. In the late afternoon and evening, avoid caffeine, chocolate, and alcohol. You may also want to limit liquid intake in the evening so that middle-of-the-night bathroom trips don’t disrupt your sleep.

Give yourself time to wind down at night. Starting at least one hour before bedtime, try to avoid mentally stimulat­ing activities, such as watching TV, working on the computer, and playing video games. Make sure your bedroom environment is conducive to sleeping; it should be dark, cool, and quiet. If you have difficulty relaxing when trying to sleep, make a list of the things you need to do the next day, as this will likely help you relax. If you’re a “clock watcher,” turn the clock around. If you can’t fall asleep within 15 minutes, it’s fine to get up, go to another room, try listening to quiet music, and then go back to bed when you feel sleepy.

Aim to go to bed and wake up at the same time every day, even on the weekends. Spouses should try to go to bed at the same time as well. And, finally, if you’ve been told that you snore loudly or that you stop breathing while sleeping, you should discuss this with your doctor, who may refer you to a sleep specialist, as these are both signs of sleep apnea.

♦ Nutrition
The foods you eat can affect your energy levels. It’s important to try to eat a well-balanced diet with the right number of calories. Your diet should also include plenty of protein, such as lean meats, fish, eggs, low-fat yogurt and cheeses, and peanut butter. If you can’t eat three square meals a day, try eating smaller meals more often. In addition, make sure you stay well hy­drated by drinking eight 8-ounce glasses of non-alcoholic, non-caffeinated fluids each day. A registered dietitian can help you create a nutrition plan that addresses your fatigue, as well as any other dietary concerns you may have.

♦ Exercise
When you are feeling fatigued, exercise is probably the last thing you want to do. However, if you want to keep your energy levels up, it’s important to remain active. Studies have shown that cancer survivors who exer­cise have more energy, are better able to perform everyday activities, have a better quality of life, and enjoy an im­proved sense of well-being. Talk to your doctor before beginning any exercise regimen. Some people may even need an assessment from a physical medicine and rehabilitation physician or a physical therapist before beginning any physical activity. Once you have the all-clear, start slowly and give your body time to adjust to the increased physical activity. Walking is an easy exercise you can try while you’re just starting out. Exercise at your own pace, gradually increasing either the duration or the intensity of exercise (never both at the same time). Your goal should be to exercise for at least 30 minutes, five days a week.

♦ Restorative Therapy
Engaging in activities that you enjoy and that help you feel relaxed are beneficial in reduc­ing your overall fatigue. Aim to set aside some time at least three days a week for an activity you enjoy. This can be listening to music, gardening, walking through a park, birdwatching, or visiting with friends and family. You could also try relaxation exercises or meditation. All of these things can be mentally and physically restorative. For many cancer survivors, fatigue is one of those side effects that you just can’t avoid. However, with these strategies for combatting cancer- related fatigue, you can learn to manage it and keep fatigue from taking over your life.

♦ ♦ ♦ ♦ ♦

Dr. Ellen Manzullo is a professor of Medicine at The University of Texas MD Anderson Cancer Center in Houston, TX. She is the clinical deputy division head for the Division of Internal Medicine and the clinical deputy department chair for the Department of General Internal Medicine. Dr. Manzullo is a general internist who evaluates and treats cancer survivors in the Fatigue Clinic at MD Anderson.

If fatigue persists and significantly interferes with your daily life, discuss this symptom with your healthcare provider right away.

This article was published in Coping® with Cancer magazine, November/December 2016.

New Normal ? What’s That?

Moving Forward after Breast Cancer

by Nancy Stordahl

It’s been more than six years since my breast cancer diagnosis, so it’s time to start taking stock of things, or so I’ve been told. I’m supposed to be making good progress on picking up the pieces. I’m supposed to start putting cancer behind me and find my new normal, whatever that means. Society seems to be nudging – no, more like pushing – me to hurry up. Be done. Put it behind me. Move on. Forget about it. Get back to the way things were. The trouble is, it’s not that simple, or even possible. I will never be done with cancer. And guess what? I don’t even want to be.

Maybe you’re reading this and think­ing who in her right mind would not want to be done with cancer? But the way I see it is this would be like eras­ing parts of my life. It would be like denying I have brown eyes, graduated from Madelia High School, have three siblings, taught second grade, am a happily married woman, and have three amazing kids. I don’t erase those parts of my life. Breast cancer is now part of who I am. How would I erase that, even if I could?

I’m reminded every day when I look in the mirror that I’m much altered physically. Then there are the emotional scars, which aren’t as obvious, but still are there. And, yes, I miss my breasts. Sometimes it seems I’m not supposed to think or say this, much less write about such a thing. After all, I’m alive. Shouldn’t this be enough? Well, yes, but I still miss them.

As for me, I haven’t figured out how anything cancer related can have any kind of normalcy to it, new or otherwise.

A Weird Kind of Normal
In a way, having a mastectomy has almost become some weird kind of normal. But it’s not normal. Then there is the reconstruction. Sometimes this process is made to sound easy, almost normal-like. Again, it’s not. Reconstruc­tion is no “free boob job.” And though reconstructed breasts may turn out lovely, they are still reconstructed. They are still stand-ins for the real deal, a salvage job, or a cosmetic fix, at best. When I’m fully clothed, no one can tell by looking at me that I’m not the same as before. But I can tell. I know. And if a woman chooses not to do reconstruction, she might be looked upon with skepticism, perhaps even made to feel she must explain her reasons for opting out and making the “radical” choice she did. None of this is in any way normal-like, easy, or easily forgotten.

In addition to the physical and emotional scars left by a breast cancer diagnosis, there are the nasty, long-term and lingering side effects that are too numerous to list. And let’s not forget the most awful lingering “side effect” of all – living the rest of your life know­ing cancer can reappear any time down the road. So it’s not really even possible to file away your cancer experience as “finished.” Cancer is never that tidy. Cancer is never over.

Cancer changes everything; it affects nearly every aspect of your life. It’s not just a bump in the road. If there’s one thing in life that definitely fits that game-changer cliché, cancer just might be it. Despite how things are often depicted in media, nothing about any of it is easy or easily forgotten. However, not forget­ting doesn’t mean I’m stuck in Cancer Land or that I’m unable to move for­ward. I’m not, and I do. But I will do it in my own time and in my own way.

And then there’s survivorship. This part of the cancer experience isn’t easy either. In fact, it’s damn hard due to a whole variety of reasons. If you’re one of the “lucky” ones and able to finish up active cancer treatment, a whole other set of challenges awaits.

Once you land in this new and un­chartered territory, you are once again inundated with far too many outside pressures and expectations about how to do this part of cancer too. The advice on finding that elusive new normal starts rolling in. It’s sometimes helpful, but often not. Some embrace the new normal concept. Others resist. As for me, I haven’t figured out how anything cancer related can have any kind of normalcy to it, new or otherwise. Noth­ing about cancer is normal. Nothing about survivorship is either; I’m still tiptoeing through it.

The “Gift” of Cancer
After a certain amount of time passes in your post-diagnosis life, society tells you you’re supposed to have learned some things and morphed into a new and improved version of your former self. This feels like one more “cancer obligation” you’re supposed to fulfill. Cancer does not miraculously make you a better person, or a worse one for that matter.

And here’s the real stunner for me. There is pressure out there to view your cancer experience as a positive thing, perhaps even to consider it to be some­thing you are grateful to have gone through. Some go so far as to call can­cer the best thing that ever happened to them, a gift even. Do you hear the fingernails on the chalkboard yet?

Calling cancer a gift or an opportunity for personal enlightenment makes a nice feature story in a magazine, but it’s not reality, at least it’s not my reality.

Calling cancer a gift or an opportu­nity for personal enlightenment makes a nice feature story in a magazine, but it’s not reality, at least it’s not my re- ality. Plus, it can be downright insulting to those with a stage IV diagnosis. May­be it is just all semantics, but words matter. A lot. I will never be calling cancer a gift. People are gifts. Life is a gift. Cancer is not. This doesn’t mean I’m bitter, negative, or ungrate­ful. Mostly, it means I’m a person who lives in reality.

If looking at cancer as a gift works for some people, more power to them. I mean that. But as for me, this kind of thinking is unfathomable. Cancer was not, is not, and never will be a gift for me and my family. Despite the illusion created by pink ribbon culture, breast cancer is still a horrible, too often deadly disease, and nothing about it is pretty, pink, or gift-like. Period.

Moving Forward
No one should feel pressured to accomplish profound things following a cancer diagnosis. No matter what your cancer stage, trying to reclaim and maintain your life and sanity will be profound enough. Trust me. You don’t necessarily need to throw out all your old ways and drive yourself nuts in the process. Make changes and improvements in your lifestyle choices, yes, but don’t go crazy worrying about every little thing you do or don’t do. Eat as healthy as you can, for sure. Exercise, yes, but don’t beat yourself up trying to run marathons or climb Mt. Kilimanjaro, unless, of course, you want to.

And you’re not obligated to write a blog or a book, mentor others, walk or run in races, deck yourself out in pink, start a foundation, or whatever it is you think you’re supposed to do now. You don’t have to do any of that stuff. Just getting back to living your life is a huge deal, and more than enough to figure out. No matter what stage cancer you were diagnosed with or where you are in treatment, figuring out your life post-diagnosis will keep you plenty busy. And there is only one way for you to do it – your way. Don’t allow anyone to tell you anything different.

Ditch the pressures and expectations. Who needs them? I wish someone had given me this little piece of advice at the start of my cancer maze. Maybe I had to figure it out for myself. Maybe we all do, but, by sharing, perhaps we can save each other some time and minimize some of the frustration.

For a lot of reasons, cancer will never be over for me. I’m moving forward, still slowly at times, but that is OK. In my mind, anyway, moving forward is different from moving on. Moving on seems to imply you should leave the past tucked neatly behind you. I prefer to think of myself as moving forward while taking my cancer expe­rience with me. I move forward a changed person, but still the same.

Maybe this really just means I was flawed and not finished evolving before cancer, and I am flawed and not finished evolving today. I was just me. I am still just me. I will always be just me. And this is enough.

♦ ♦ ♦ ♦ ♦

Nancy Stordahl is a breast cancer survivor, former educator, and now a freelance writer and blogger at NancysPoint.com, where she shares candidly about all aspects of her can­cer experience, pink ribbon culture, grief, survivorship, pets, and more. She is also the author of Getting Past the Fear: A Guide to Help You Mentally Prepare for Chemo­therapy, as well as Cancer Was Not a Gift & It Didn’t Make Me a Better Person: A memoir about cancer as I know it, from which this article was adapted.

This article was published in Coping® with Cancer magazine, November/December 2016.

Do You Know Your Healthcare Rights?

5 Legal Tips for Cancer Survivors

by Stephanie Fajuri, Esq

Knowledge image

As a cancer survivor, it’s important to know your legal rights so you can advocate for yourself, before legal issues become a problem. Don’t wait until an issue arises to learn your legal rights. Here are the top five most common legal issues faced by cancer survivors, plus tips on how to deal with them.

1. Insurance Coverage
It is your responsibility to understand your health insurance coverage. Too often, we assume that the doctors and nurses treating us understand our insur­ance coverage, and that they know better than to suggest treatments that aren’t covered or that we can’t afford. Unfor­tunately, this is not always the case. To save yourself frustration – and, pos­sibly, significant medical debt – down the road, it’s important for you to take the initiative to learn as much about your insurance coverage as you can so you’re not left with unexpected bills.

For starters, thoroughly review your summary plan description or evidence of coverage booklet, both of which are usually available online. If you have questions about your plan, call your insurance company, and take detailed notes about what the customer service representative tells you. And if it’s too much to handle on your own at the moment, ask a trusted friend or family member to help you. Insur­ance can be confusing, but knowing what’s covered can help you plan accordingly.

2. Workplace Accommodations
If cancer and the effects of treatment are making certain aspects of your job more difficult, you might be entitled to something called a reasonable accommo­dation. The Americans with Disabilities Act protects workers with disabilities from discrimination at companies with at least 15 employees, and people with cancer are usually considered “disabled’ under the ADA. If you work for a smaller employer, check to see if your state’s fair employment law covers you. Not only are employers who are bound by these laws prohibited from discriminating against you if you have cancer, but they also might have to make changes to the work environment that help you to keep doing your job, as long as the changes you request aren’t too expensive or too difficult for your employer to make.

For example, changing your work schedule so you can go to doctors’ appointments or chemo treatments, allowing you to work from home, or even adjusting the office temperature might be considered a reasonable ac­commodation, depending on your job. Keep in mind that you need to ask for workplace accommodations before your work performance is affected. If you start showing up to work late, missing work, or missing deadlines, your em­ployer might be allowed to write you up or even fire you if they were not aware of your need for an accommodation.

3. Time Off from Work
You don’t have to quit your job just because you have cancer. The Family and Medical Leave Act provides up to 12 weeks of unpaid job- and health benefit-protected leave for eligible employees.

You need to ask for workplace accommodations before your work performance is affected.

Author of Article photo

Stephanie Fajuri

If you have worked for your em­ployer for at least a year, you’ve worked 1250 hours in the last year, and your employer has at least 50 employees within a 75-mile radius of where you work, you might be able to take FMLA leave for yourself if you are sick, or if you’re a caregiver for your spouse, parent, or child who is. Under FMLA, you can take the 12 weeks all at once, or in smaller increments. So, whether you are having surgery with a long recovery or only need one day off per week for treatment, you may be able to use FMLA leave.

If you don’t qualify for FMLA, you might still be able to take time off as a reasonable accommodation under the Americans with Disabilities Act (see tip 2 above). It’s also a good idea to check your employee manual or talk with Human Resources about medical leave, since some larger employers provide even more time off than the law requires.

4. Debt
Cancer treatment is expensive, even if you have great insurance coverage. Since you might not be able to prevent taking on some debt, prioritizing which debts you pay first can help improve your quality of life.

There are two main types of debt: secured and unsecured. Secured debt is a debt that is tied to a piece of property (like a home or a car), called collateral, which means that if you don’t pay the debt, that property can be repossessed. Unsecured debt is not linked to collat­eral. If you don’t pay an unsecured debt, the company or person you owe cannot get anything from you unless they get a judgment against you in court. Ex­amples of unsecured debts are credit cards, medical bills, and student loans.

Sometimes it can be a good idea to prioritize paying for necessary expenses over unsecured debts. For example, if you need your car to get to and from treatment, you will need to keep making your car payment so it doesn’t get re­possessed. Also, a landlord or bank can start eviction or foreclosure proceedings if you don’t pay your rent or mortgage, even if you have cancer. Since having a place to live is essential, you might want to prioritize paying your rent or mortgage instead of making your credit card payment.

5. Denial of Coverage
When it comes to getting insurance coverage for a treatment you need, don’t take no for an answer. If your health insurance company denies coverage of a certain service or treatment, you should likely appeal the decision. First, you usually have to appeal directly to your insurance company to get them to reconsider their decision. If they still say no, most people with private health insurance now have access to an exter­nal insurance appeals process, sometimes called an Independent Medical Review, thanks to the Affordable Care Act. An external appeal is where an independent third party reviews your request to see whether the insurance company was right in denying you coverage.

Additionally, most people are denied Social Security Disability benefits the first time they apply. If you apply for Social Security Disability Insurance or Supplemental Security Income because you are disabled and no longer able to work, and you are denied benefits, you have a better chance of getting approved and receiving back-pay you might be entitled to if you appeal, rather than submit a new application. You usually don’t need a lawyer for the first Social Security appeal, but it can be helpful to hire a lawyer if you reach the second level of appeals and are scheduled for a hearing.

♦ ♦ ♦ ♦ ♦

Stephanie Fajuri is the supervising attor­ney at the Cancer Legal Resource Center, a national program of the Disability Rights Legal Center in Los Angeles, CA.

Learning your rights and how to enforce them can help prevent legal problems down the road. The Cancer Legal Resource Center empowers survivors to learn their legal rights so they can advocate for themselves, before legal issues become a problem. The CLRC provides free education and resources on cancer-related legal questions to cancer survivors, caregivers, and healthcare professionals. For more tips or answers to your cancer-related legal questions, contact the CLRC at (866) 843-2572 or visit CancerLegalResources.org.

Disclaimer: Through this article, the author is not engaged in rendering any legal or professional services by its publication or distribution. It is not intended to be legal advice or to establish an attorney-client relationship.

This article was published in Coping® with Cancer magazine, November/December 2016.

Cheers to the Holidays…

Even with Cancer

by Kaylene Chadwell

Wellness image

For most, the holiday season is a wonderful time of year, filled with cherished traditions and time spent with loved ones. However, when you’re dealing with cancer, the holiday hub­bub of decorating, shopping, cooking, planning, and cleaning can become exhausting and stressful. While there’s no right or wrong way to celebrate, here are some tips to help you have a cheerful, stress-free holiday season.

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

Set realistic expectations.
Don’t feel like all your holiday celebra­tions need to be “perfect.” Overextending yourself and your body in the flurry of festive activities can cause stress, which can make you miss valued quality time with friends and family.

Be with people who lift your spirits.
Spend time with people who make you happier, and not those who drag you down. Don’t feel like you have to spend time around negative relatives just be­cause it’s the holiday season. When you have limited time and energy, it’s best to spend it with the people who matter most to you.

Be open to change.
There may be some holiday traditions you just don’t have the time or energy to participate in. Don’t dwell on how cancer has changed your holidays. Modify your usual holiday traditions to meet your needs this year, or create new ones that make the most of your energy. Enjoy those special moments you have with your loved ones.

Remember the reason for the season.
Focus on what’s most important to you and your family.

It’s OK to say no.
Don’t feel obligated to be involved in all the festivities that come your way. Saying yes to everything can lead to stress and exhaustion during this busy time of year. Your loved ones will understand if you can’t participate in every holiday activity. Limit yourself to what you can manage and enjoy.

Ask for and accept help.
You don’t have to do it all, especially by yourself. If someone offers help, accept it. This will help you preserve your energy during the long holiday season. Be realistic about what you can do. If there are certain traditions you want to continue this year, it’s OK to ask for help to make them happen.

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.

Maintain a regular routine.
Try to keep your normal mealtimes and sleep schedule. Don’t miss meals. Keep late nights and long days to a minimum, especially when you’re feeling tired. Don’t compromise your health for holiday festivities.

Be mindful of your eating habits.
It’s easy to overindulge when there are holiday parties and seasonal good­ies everywhere you look. Control your portions. Eat balanced meals, and avoid drinking excessive amounts of alcohol. Give your body plenty of the healthy food it needs.

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 mentally and physically and give you more energy. Just make sure to talk with your doctor before starting any exercise program.

Make priorities.
You may not have the time or energy to do some activities during this bustling time of year. Figure out what is most important to you and your loved ones. Making a list of the holiday activities you want and need to do can help you see which ones you can skip this year.

Listen to your body.
You won’t always feel up for participat­ing in holiday events. Avoid overworking your body and mind. Take a break from all the festivities when you need to. It’s important to balance activity and rest throughout the holiday season.

♦ ♦ ♦ ♦ ♦

This article was published in Coping® with Cancer magazine, November/December 2016.

Your Guide to Bladder Cancer Treatment

 

Photo by Cancer Type

Different types of treatment are available for people with blad­der cancer. Some treatments are standard (the currently used treatment), and some are being tested in clinical trials. There are four types of standard treatment for bladder cancer:

Surgery
Radiation therapy
Chemotherapy
Biologic therapy

Surgery
If you’ve been diagnosed with bladder cancer, your doctor may recommend one of the following types of surgery:

♦ Transurethral resection (TUR) with fulguration: Surgery in which a cysto­scope (a thin lighted tube) is inserted into the bladder through the urethra. A tool with a small wire loop on the end is then used to remove the cancer or to burn the tumor away with high-energy electricity. This is known as fulguration.

♦ Radical cystectomy: Surgery to re­move the bladder and any lymph nodes and nearby organs that contain cancer. This surgery may be done when the bladder cancer invades the muscle wall, or when superficial cancer involves a large part of the bladder. In men, the nearby organs that are removed are the prostate and the seminal vesicles. In women, the uterus, the ovaries, and part of the vagina are removed. Sometimes, when the cancer has spread outside the bladder and cannot be completely removed, surgery to remove only the bladder may be done to reduce urinary symptoms caused by the cancer. When the bladder must be removed, the sur­geon creates another way for urine to leave the body.

♦ Partial cystectomy: Surgery to remove part of the bladder. This surgery may be done for people who have a low-grade tumor that has invaded the wall of the bladder but is limited to one area of the bladder. Because only a part of the blad­der is removed, people who have this type of surgery are able to urinate normally after recovery. This type of surgery is also called segmental cystectomy.

♦ Urinary diversion: Surgery to make a new way for the body to store and pass urine.

Biologic therapy is a treatment that uses a person’s immune system to fight cancer.

Radiation Therapy
The way the radiation therapy is given depends on the type and stage of the cancer being treated. External radiation therapy is the type used to treat bladder cancer.

Chemotherapy
The way chemo­therapy is given depends on the type and stage of the cancer being treated. Even if your doctor removes all the cancer that can be seen at the time of surgery, some people may be given chemotherapy after surgery to kill any cancer cells that are left. Treatment given after surgery, to lower the risk that the cancer will come back, is called adjuvant therapy. For some bladder cancer survivors, regional chemotherapy may be put into the bladder through a tube inserted into the urethra. This is called intra­vesical therapy.

Biologic Therapy
Biologic therapy is a treatment that uses a person’s immune system to fight cancer. Sub­stances made by the body or made in a laboratory are used to boost, direct, or restore the body’s natural defenses against cancer. This type of cancer teatment is also called bio­therapy or immunotherapy. Bladder cancer may be treated with an intravesical biologic therapy called BCG (bacillus Calmette-Guérin). The BCG is given in a solution that is placed di­rectly into the bladder using a catheter.

Follow-Up Testing
After starting treatment for bladder cancer, follow-up tests may be needed. Some tests will be repeated in order to see how well the treatment is working. Decisions about whether to continue, change, or stop treatment may be based on the results of these tests. Some of the tests will continue to be done from time to time after treat­ment has ended. The results of these tests can show if your condition has changed or if the cancer has recurred.

Recurrent Bladder Cancer
Bladder cancer often recurs, or comes back, even when the cancer is superficial. Treatment of recurrent bladder cancer depends on previous treatment and where the cancer has recurred. Surveillance of the urinary tract to check for recurrence is standard after a diagnosis of bladder cancer. Surveil­lance involves closely watching your condition but not giving any treatment unless there are changes in test results that show the condition is getting worse. During active surveillance, certain exams and tests are done on a regular schedule. Surveillance may include ureteroscopy and imaging tests.

♦ ♦ ♦ ♦ ♦

New types of treatment for bladder cancer are being tested in clinical trials. To learn more about clinical trials, visit cancer.gov/clinicaltrials.

Source: National Cancer Institute, cancer.gov

This article was published in Coping® with Cancer magazine, September/October 2016.

A Recipe for Getting the Nutrition You Need during Cancer Treatment

by Holly Clegg

Wellness image

Eating high-calorie, low-volume snacks can help you maintain your weight when your appetite just isn’t there.

Anyone who’s been diagnosed with cancer knows that cancer and the side effects of treatment can affect the body in many differ­ent ways. People undergoing cancer treatment may experience loss of appetite, taste and smell changes, sore throat, diarrhea, consti­pation, and a lack of energy. All these changes can make maintaining adequate calories and nutrition difficult.

However, it’s important for cancer survivors to make sure that good nutrition doesn’t fall by the wayside during treatment. A healthy diet can help you keep up your strength and boost your immune system. What you eat may also make a difference in how well you handle treatment.

When going through treatment, your diet is in constant flux, changing with taste, intolerance of certain foods, and caloric needs. However, despite these challenges, it is possible to eat well and stay properly nourished during cancer treatment.

Author of Article photo

Holly Clegg

What to Eat during Chemo
On the morning of your scheduled chemother­apy treatment, try eating a low-fat, light meal. For example, cereal, toast, oatmeal, grits, or fruit salad. In the 24 hours fol­lowing treatment, you may want to stick to liquids, soups, puddings, and sand­wiches. Try to avoid high-fat, fried, or greasy foods for the first 24 to 48 hours following treatment. Instead, opt for easier-to-tolerate foods and lighter reci­pes to help boost your immune system and give you strength and energy. Sup­plemental nutritional drinks, like Boost, are also good choices if you don’t feel like eating solid foods.

If you find that only two foods ap­peal to you, then there is nothing wrong with eating those two foods until you feel ready to expand your diet. If break­fast food is what appeals to you, then go ahead and have it for dinner also.

The Importance of Snacking
Snacks are strongly encouraged during cancer treatment, as it is sometimes easier to eat several small meals or snacks throughout the day rather than three large meals. Eating high-calorie, low-volume snacks can help you maintain your weight when your appetite just isn’t there. Keep cheese, dips, fruit, nuts, popcorn, and crackers on hand for quick snacks. Smoothies also make good snacks, especially for people with mouth sores or those for whom strong smells are off-putting. Not to mention, smoothies are a good way to sneak extra fruit and veggies into your diet.

Pile on the Protein
When going through cancer treatment, it’s impor­tant to avoid losing too much weight. Research has shown that cancer survi­vors who maintain their weight and eat a healthy diet have fewer complications from chemotherapy, radiation therapy, and surgery – with shorter hospital stays, reduced illness, and fewer infections. They also tend to better preserve their strength and have an improved sense of well-being.

Adding protein to your diet can help you maintain a healthy weight, give your body fuel to build and repair tis­sues, and protect your immune system. Without enough protein, your body may take longer to recover from illness, and you may have a lower resistance to infection. Following surgery, chemo­therapy, or radiation therapy, most cancer survivors need additional protein to help the body heal damaged tissue and to help prevent infection. Good sources of protein include legumes, eggs, nuts and seeds, peanut butter, cheese, beef, and chicken breasts. You can also add a little nonfat instant dry milk to scram­bled eggs, soup, cereal, and sauces to infuse some extra protein into your diet.

Don’t Forget to Hydrate
Hydration is essential during cancer treatment. Try keeping a glass of water with you at all times. I recommend drinking eight to ten glasses of water per day.

♦ ♦ ♦ ♦ ♦

Holly Clegg is a cookbook author and co­author (with oncologist Gerald Miletello, md) of Eating Well Through Cancer: Easy Recipes & Tips to Guide You Through Treatment and Cancer Prevention, which has recently been re-released as a special revised and expanded 15th Anniversary edi­tion. Visit HollyClegg.com to learn more.

You can find recipes and more tips from Holly at TheHealthyCookingBlog.com.

This article was published in Coping® with Cancer magazine, November/December 2016.

How to Make Exercise a Part of Your Post-Cancer Life

by Nancy Campbell, MS

Wellness image

It has been six years since the American College of Sports Medicine published their rec­ommendations that all cancer survivors should strive to avoid inactivity. Since then, research has continued to show that rates of cancer recurrence are lower in survivors who are physically active on a regular basis. Not only that, but regular exercise has been shown to help ease many of the side effects of cancer treatment.

In fact, exercise is one of the most important activities you can pursue to give yourself an extra boost during and after cancer treatment. And the good news is you don’t have to become an elite runner or join a CrossFit gym to reap the benefits. You just need to add physical activity into your daily rou­tine. Here are some tips to help you get started.

Start low and go slow.
Before you start exercising, you should check in with your medical team to make sure they don’t have any concerns about you beginning an exercise program. Once they have given you clearance, it is important to start slowly. And make sure your activity is enjoyable, not exhausting.

As you begin establishing a routine, set yourself up for success by finishing each round of exercise knowing you could have done a little bit more. You want to avoid doing a big bout of activ­ity that leaves you exhausted and unable to exercise again a day or two later while your body is recovering from treatment. As you get stronger, try exercising in two or three 10-minute bursts over the course of the day.

Exercise should be more than a single event in your day.
The goal is to stay as active as possible throughout the day.

Author of Article photo

Nancy Campbell

Keep track and set goals.
There are so many ways to keep track of your progress with exercise. Maybe it’s a calendar on your refrigerator or a wearable activity tracker, like Fitbit. The main goal of tracking your exercise is to keep you aware of how much activity you are getting and to remind you to stay active.

In the beginning, it’s best to focus on being consistent with your exercise routine, rather than worrying about the duration or intensity of your workout. This will help your body gradually adjust to incorporating activity into your lifestyle.

Exercise should also be more than a single event in your day. The goal is to stay as active as possible throughout the day. Look for creative ways to add more movement into your day. For example, many activity trackers will alert when you have been inactive for more than an hour. You could also set a reminder on your phone or your com­puter that signals you to get up every hour and move around. Another tip is to park farther away when you are run­ning errands, or get off the bus one stop earlier and walk that extra block.

Many people find it useful to set a daily or weekly exercise goal to keep them on track. Just make sure that your goal is S.M.A.R.T.:
♦ S pecific
♦ M easurable
♦ A ttainable
♦ R elevant
♦ T ime-bound

For example, instead of saying “I will exercise more,” try setting a more concrete goal: “I will walk for 20 minutes at 10 o’clock on Monday, Wednesday, and Friday mornings.” Setting goals like this will keep you moving forward as you are focusing on making small changes that will help you reach your overall wellness goals.

Look for resources.
Many dif­ferent programs are available to help cancer survivors stay active. For example, YMCAs across the country offer LIVESTRONG at the YMCA, a 12-week physical activity program designed to get cancer survivors back on their feet. In addition, many hospitals and wellness centers offer move­ment classes that are designed for cancer survivors. Check with your healthcare team to see if one is available in your area. If you are struggling with side effects from treatment, like neuropathy, that make it difficult to exercise, a physical therapist, occupational therapist, or cancer exer­cise specialist can help tailor an exercise program to meet your unique needs.

Don’t be too hard on yourself.
Be kind to your body as you are recovering from treatment and easing into exercise. I always say, 10 percent of something is better than 100 percent of nothing.

♦ ♦ ♦ ♦ ♦

Nancy Campbell is an exercise physiologist who offers fitness consults and classes to cancer survivors through Dana-Farber Cancer Institute’s Adult Survivorship Program and Zakim Center for Integrative Therapies in Boston, MA. For more information, visit DanaFarber.org/exercise.

Many hospitals are now researching exercise and have clinical trials that you may be eligible for. These can be a great tool to help you get active or stay motivated as you pursue physical activity. You can find these trials by visiting ClinicalTrials.gov and entering exercise and cancer in the search box.

This article was published in Coping® with Cancer magazine, November/December 2016.

Finding My Strength

How Coming to Terms with My Prostate Cancer Diagnosis Became a Transformative Experience

by Richard S. Hillman

Inspiration image

When I heard the doctor say prostate cancer, it felt as if I was struck by a bolt of light­ning. My wife, Audrey, and I had moved to Florida to enjoy an active retirement. A few sets of tennis and a swim were on our daily agendas. Not this. It seemed our world would crumble.

“Treatment is risky,” I said. Audrey gave me an accusatory look. “I don’t want you to die any time soon,” she said. Was she trying to scare the hell out of me?

“I’d be half-dead with erectile dysfunction or incontinence,” I whis­pered. My healthy lifestyle and overall fitness had imbued me with a sense of invincibility. Mortality had always been a theoretical concept, the subject of college debates or accountants’ actuarial charts. But now, life had become fragile and tenuous. My heart throbbed like a frightened child’s.

Audrey read me like a book: “Don’t be a baby! What good is dwelling on worst-case scenarios? If it metasta­sizes ...” Visions of discolored, rotten tissue spreading through my guts sent chills down my spine.

The anger which had supplanted my fear gradually subsided, and I opted for two months of IMRT, intensity-modulated radiation therapy. In the radiation oncology waiting lounge, we saw people representing a diverse spectrum of ages, races, and social groupings. None looked particularly nervous. I tried to relax, yet felt like a fish out of water. My self-image as an athletic macho was being tested.

“How are you today?” the nurse asked.

“Anxious.” Knowing that doubt and fear would exacerbate my physical condition did not prevent me from becoming an insomniac obsessed with my health.

My imagination had often frazzled my nerves. Irrational fear and negativity resulted in nightmares and fatigue.

“That’s natural,” she said. Ironically, the signs adorning the hospital walls were disquieting: “Live in the moment!” “Have faith!” These admonishments to focus on the bright side had the opposite effect on me.

During radiation sessions, I had to remain still while the machine hovered around me. I felt like the subject of a scientific experiment, although back­ground music and a photographic mural on the ceiling provided pleasant diver­sions. “You might experience fatigue, urinary burning, or diarrhea,” my doctor said, “but nothing we can’t deal with.”

Throughout treatment, I continued to play tennis and swim. My life went on as normal. Yet, in some ways, it was on hold. I felt as if I were in limbo, a difficult position for some- one who seeks certainty. Impressed and heartened by the supportive atmosphere, and with Audrey con­tinuously at my side, I began to feel hopeful. “Just relax. You’re in good shape. Keep active,” everyone encour­aged. But that did little to assuage my lingering apprehension that the entire experience was illusory.

Most people are shocked when they hear the words prostate, cancer, or radiation. Friends either are at a loss for words or try to commiserate. Fam­ily members want to console. Those who had prostate cancer want to share their experiences. The problem is that each person’s age, physical condition, emotional status, and stage of the disease call for different approaches. It felt as if Audrey and I were on a lonely journey.

My imagination had often frazzled my nerves. Irrational fear and negativ­ity resulted in nightmares and fatigue. Yet hope and optimism produced phys­ical strength and a sense of well-being. So I had to trust expert opinions regard­ing numerical ranges and probabilities, something that does not come easy to a skeptic. The fellow who preceded me in the treatment room invariably remarked with a broad smile, “Get in there and kill those critters!” His down-to-earth testimony to the power of a positive attitude inspired me to face reality head on.

Audrey helped me stay on schedule. As treatment progressed, time appeared to accelerate, and, finally, the last ses­sion snuck up on us. Shortly thereafter, a heavy weight seemed to fall off my shoulders when we were informed that the treatment had been effective. Initially, my fear caused denial, anger, and depression. Yet this challenge, ac­companied by caring support, evoked a newfound humility and strength in me. For this, as a prostate cancer survi­vor, I am truly grateful.

♦ ♦ ♦ ♦ ♦

Richard S. Hillman, a prostate cancer survivor living in Hudson, FL, is the author of Tropical Liaison, a political thriller set in the Caribbean. To learn more, visit RichardSHillman.com.

This article was published in Coping® with Cancer magazine, November/December 2016.

ESPN’s Holly Rowe Refuses to Let Cancer Win

“Fight every moment so that cancer is not the most interesting thing about you.”

by Kaylene Chadwell

Celebrity Cancer Survivor

Holly Rowe
(Photo by Phil Ellsworth / ESPN Images)

You can’t watch college football (or basketball, or softball, or the NBA, or WNBA) without seeing Holly Rowe. A Sports Emmy nominee, Holly is one of ESPN’s most popular college football sideline reporters, as well as a play-by-play commentator for a wide range of sports. She’s the one interviewing players and coaches be­fore, during, and after games, asking the hard-hitting questions. Known for her ability to always get the job done, even going so far as to climb on top of a table to make sure she got her post-game interview, Holly is widely respected by top coaches and players, as well as her ESPN colleagues.

Over the past two years, though, Holly’s unconquerable spirit has been put to the test as she fights a rare form of cancer, all while she continues to travel and work for ESPN. According to Holly, one day she’s undergoing in­travenous immunotherapy infusions, and the next she’s reporting from the sidelines of the Texas vs. Notre Dame football game.

“I just can’t sit at home and feel sorry for myself.
If I limit my schedule and don’t do what I love,
then cancer is winning a little bit.”

“I’ve gone some days where I’m at the hospital all day getting blood drawn or getting infusions,” Holly shares with Coping magazine, “and, the next morning, I have to fly out and cover a football game. It’s just a very weird life to go from being a cancer patient one day to being an ESPN sideline reporter the next.”

Celebrity Cancer Survivor

Holly Rowe interviews Coach Geno Auriemma of the University of Connecticut Huskies during the 2016 NCAA Women’s Basketball Final Four game.
(Photo by Allen Kee / ESPN Images)

Holly was first diagnosed in May 2015. She explains, “I had a spot on my chest that looked ugly, and I thought, Oh, I’m going to go get this removed, thinking it was no big deal.”

However, the “ugly spot” turned out to be desmoplastic melanoma, a rare, invasive form of the deadly skin cancer. While her doctor was able to surgically remove it, with clear margins, Holly admits she was shocked by the diagnosis.

“I think every single person who hears that word – cancer – just panics,” she reveals. “It’s a frightening thing. And I just felt this disbelief. I’m a young, healthy, go-getter, scrappy person. How could this possibly be?”

After another melanoma was found in January of this year, Holly underwent a second, more invasive surgery to re­move it, along with 29 lymph nodes. Then she entered a clinical trial where she endured 30 grueling days of infu­sions. “It was really, really awful,” Holly admits. “I wouldn’t wish that on anyone. But I made it through.”

However, she had a recurrence shortly after, which necessitated an­other treatment protocol. She’s now undergoing a different type of immuno­therapy treatment, one she anticipates being on for the next two years, going in every three weeks for infusions.

“It’s just a very weird life to go from being a cancer patient one day to being an ESPN sideline reporter the next.”

Through it all, though, Holly has continued doing the work that she says brings her joy. “I think I’m getting lifted up greatly by working and seeing in­spiring athletes,” she says. “I’m lucky because my job is inspirational, watch­ing other people succeed.

“A lot of people question why I do work and try to keep being such a go-getter,” she admits. “And it’s simple, because I just can’t sit at home and feel sorry for myself. If I limit my schedule and don’t do what I love, then cancer is winning a little bit. For me, it’s a way to keep my mind off the stress of it.”

Another thing that Holly says has helped her as she fights cancer is the support she’s received from her family, especially her son, Mckylin. She declares they have been the backbone throughout her cancer journey. Her colleagues, the coaches and players she covers, and, of course, her many fans have also shown incredible support. “I’ve just had an out­pouring of support,” she says. “Every single day, I have tons of messages on social media. It’s so great because it just keeps me going knowing that people are there for me.”

Celebrity Cancer Survivor

Holly Rowe catches up with University of Oklahoma Sooners shooting guard Buddy Hield during a 2016 regular season game.
(Photo by Phil Ellsworth / ESPN Images)

Holly tries to stay connected to those who are supporting her by sharing her journey, mostly through social media. For her, it’s also a way to show solidarity with other cancer survivors. For example, in July, she posted a video to Facebook of her head being shaved. She wrote, “So today was interesting. Had to have a little fun with this and laugh so I don’t cry!!! Much love to all cancer patients going thru this. Let’s be strong together.”

Surprisingly, Holly admits that losing her hair has been one of the most difficult parts of the cancer expe­rience so far. “This sounds so shallow and ridiculous,” she confesses, “but I had gone through hideous treatment and other really tough parts of having cancer, and, for some reason, my hair falling out was the toughest thing I went through. It makes you feel vulnerable and sick. There’s something about when it changes the way you look, when can­cer changes how you look at yourself and what you look like in the mirror, that gets to you. It’s like, Now, I’m a cancer patient.

But she didn’t let her bald head get to her for long. Though she sometimes wore wigs for on-air coverage, Holly didn’t shy away from displaying her baldness proudly. And beautifully, too, for that matter. In the process, she’s become an inspiration to other women battling cancer, showing definitively that you can be bald and beautiful.

Now, as her blond hair grows back in, short and spiky, Holly is keeping tabs on her cancer with periodic scans and plans to continue sports reporting for ESPN. After all, it’s not just a job to her; it’s a passion.

“I just did a game that was the best game I’ve been at in probably 20 years – the WNBA Championship Finals Game 5,” Holly shares. “I left that arena, and I was just overwhelmed, blown away. I am so grateful that I was here for that – that I have fought through this cancer and not given up, so I can be here for moments like this.”

♦ ♦ ♦ ♦ ♦

Keep up with Holly Rowe on Twitter @sportsiren.

This article was published in Coping® with Cancer magazine, November/December 2016.

Answers to Your Questions about Lung Cancer

 

Photo by Cancer Type

What does my lung cancer diagnosis mean for me?
After being told you have lung cancer, you may wonder what your prognosis will be – what this diagnosis means for your future and your health. You may see estimates of how long a person may live after a particular type or stage of lung cancer is diagnosed and assume that this is what will happen to you. Try not to think this way. Remember:

♦ You are not a statistic. Statistics cannot predict what will happen to you. You are a unique individual, and no one can predict exactly how your body will respond to your lung cancer and treatment. Lung cancer statistics estimate the average survival for all people with a spe­cific type and stage of lung cancer.

♦ Lung cancer statistics are based on infor­mation from studies that were done from three to ten years ago. Today’s newer ther­apies have not been around long enough to affect the statistics, so your prognosis may be far more hopeful than the statistics sug­gest. The chances of being cured of lung cancer depend mostly on the stage of lung cancer you have. Early-stage cancer is the easiest to treat and has the best chance of being cured. If the cancer has spread to other places in the body, the goal of treatment is to keep the cancer under control for as long as possible. If you have read or are told that your cancer cannot be cured, remember that incurable cancer can be treated and may be stabilized. Newer treatments are helping some people with lung cancer live good, meaningful lives for years after their diagnosis.

What are my treatment choices?
Chemotherapy, radiation, surgery, targeted therapies, and immunotherapy are the main treatment options for lung cancer. However, a number of factors can affect which treatments will be best for you; these factors include your cancer’s particu­lar type and stage, location, and genetic or other molecular characteristics. Promising new treatments may be available through clinical trials, so be sure to ask your doctor about these options.

You are a unique individual, and no one can predict exactly how your body will respond to your lung cancer and treatment.

How long will my treatment last?
The length of your treatment will depend on the type and stage of lung cancer you have and how well you respond to treatment. Your treatment plan will be explained to you before therapy begins. If you have questions, be sure to ask your doctor or care team. You will receive regular check-ups to see how your treatment is working. If your cancer does not respond to the first treatment you receive, your doctor may discuss other treatment options with you.

Should I consider joining a clinical trial?
Clinical trials are research studies that measure how well new drugs, treatments, or tests work, or that help doctors learn more about cancer or other diseases. Trials are generally available for every stage and type of lung cancer, although every individual may not be eligible for a given trial. Many people fear they will receive a placebo if they participate in a clinical trial. When placebos are used in a trial, participants almost always receive them in addition to standard, proven treatments. Moreover, partici­pants are always fully informed if they join a trial where they may receive a placebo. To talk to someone about the clinical trials available to you, visit the EmergingMed clinical trial matching service website, EmergingMed.com, or call (800) 698-0931.

What is chemotherapy?
Chemotherapy is a word used for drugs that kill cancer cells, usually by disrupting how the cells divide. Chemotherapy is based on the principle that cancer cells grow and divide more rapidly than nor- mal cells. However, because some normal cells (hair cells, for example) also grow and divide rapidly, chemotherapy can sometimes kill those cells as well.

What are targeted therapies?
Targeted cancer therapies are treatments or drugs that specifically interfere with the ways cancer cells – and not normal cells – survive, grow, and spread. These drugs “target” specific molecules (genes, proteins, etc.) in the tumor cells, and therefore are more specific to cancer cells than chemotherapy is, thereby causing less damage to normal cells. Not all tumors have the same abnormal targets, so your doctor may take a sample of your tumor and run tests (often called molecular or genetic tumor testing) to try to match the most effective treatment for your cancer. You should ask your doctor about whether such testing is appropriate for you.

What is immunotherapy?
Immunotherapies are treatments that boost a person’s own immune system to fight cancer. In recent years, immunotherapies have become a potential breakthrough in the treatment of several types of cancer, including lung cancer.

♦ ♦ ♦ ♦ ♦

Reprinted with permission from Free to Breathe, freetobreathe.org.

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

How Walking a Labyrinth Helped Me to Heal after Cancer

by Robin B. Dilley, PhD

Wellness image

As a breast cancer survivor, I found the end of treatment to be absolutely terrifying. I did not experience the relief I assumed would come after completing my final chemotherapy session. What I got in­stead were tears – and they weren’t exactly tears of joy. It was like all of the pent-up fear, anger, and emotional turmoil, which I had pushed aside while I was focusing on surviving, suddenly gushed out. Actively fighting cancer through chemotherapy and radiation had given me a sense of control. But when I was no longer solely focused on fighting, I realized I still felt helpless.

I needed something to help me cope with the emotions I was experiencing in the wake of cancer. It just so happened that as my treatment ended, a beautiful labyrinth was permanently installed in downtown Phoenix, AZ, near where I live. If you’re unfamiliar, a labyrinth is a complex series of winding paths, similar to a maze. However, a laby­rinth is different from a maze in that it is one singular path to follow, rather than a puzzle to be solved. Labyrinths have been around for over 4,000 years, but they are being redis­covered and used in many ways today – walking meditation is one of them.

I made a commitment during my first year post-treatment to walk the labyrinth one day each week. As I made my reflective walk each week, I began to let go of the angst and fear I had been holding on to since my cancer diagnosis. After a few weeks of walking, I soon realized that I was walking my way to a place of inner peace, acceptance, and resiliency. In some ways, cancer was no longer the enemy. My hatred for the illness had dissipated, and I had reached a place of neutrality. My walking medi­tations allowed me to work through the despair and helplessness I felt when I began the recovery phase of my cancer journey. My medical battle was com­pleted, and through walking the carefully placed curves of the labyrinth, one singular path to the center and out again, I began to fully heal.

I soon realized that I was walking my way to a place of inner peace, acceptance, and resiliency.

Author of Article photo

Dr. Robin Dilley

How You Can Discover the Healing Power of the Labyrinth for Yourself
As a cancer survivor, you have likely also experienced the maze of cancer treatment – full of dead ends and confusing and conflicting treat­ment protocols. You, too, can use labyrinths as a path to healing after cancer, or during any part of your cancer journey. If you are unable to walk comfortably or steadily, don’t fret. It is possible to “walk” a labyrinth with your fingers using a hand-held replica or a mobile app.

Unlike a maze, which can be stress­ful to solve, labyrinths bring peace, reflection, and healing. You just have to put one foot in front of the other and stay the course; the path is already laid out for you. At times you may feel a little disoriented or lost, but keep going with the confidence that moving for­ward will take you exactly where you need to be.

When you stand at the entrance of your labyrinth – whether it’s a physical one or virtual – begin your meditation with these three simple words: release, receive, return. Your walk to the center will be filled with the release of fears, worries, hurts, and concerns. When you arrive at the center, it may be helpful to envision it as a beautiful garden over­flowing with everything you need to heal. Imagine picking yourself some blooms of hope, courage, bravery, energy, and health.

Once you’ve collected what you need, begin your return – one bend at a time – the same way you entered. When you reach the end, I hope you will have received the renewal you need – to return to treatment, to life, to the world – restored as the wonder­ful human being you are. I wish you well on your journey, and I wish you joy in your heart.

♦ ♦ ♦ ♦ ♦

Dr. Robin Dilley is a private-practice psy­chologist and the author of In a Moment’s Notice: A Psychologist’s Journey with Breast Cancer. To learn more about Dr. Dilley, visit her website, PsychotherapyUnlimited.com.

Labyrinths are finding their way to medical facilities, colleges, schools, and prisons, as their meditative uses are becoming more recognized. You can also find them in parks and churches. To locate one in your area, go to LabyrinthLocator.com.

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

Gifts Closed the Distance

by Linda Slusser

Wellness image

Marilyn (left) and author Linda Slusser

When my long-distance best friend was diagnosed with cancer, I had to find a way to support her from afar.

Even over the phone, I could tell from her voice that my best friend of 58 years was about to share bad news. But I wasn’t prepared for her matter-of-fact announcement: “I have breast cancer.”

Marilyn would be facing a lumpec­tomy, followed by three weeks of daily radiation. How could I support her when I couldn’t be there by her side?

I decided to create a morale-boosting kit and have it delivered to Marilyn’s house. Her first reaction to the mysterious box went something like this: “You said you were sending a box in the mail, but I didn’t expect it to be so big! Each wrapped package and gift bag has a note dictating when I can open it. NOT FAIR!”

Yet, as the weeks of treatment pro­ceeded, Marilyn looked forward to the little surprises I had lined up for her. She felt they sparked her curiosity and cheered her during a bleak period.

As the weeks of treatment proceeded, Marilyn looked forward to the little surprises I had lined up for her.

My kit consisted of items chosen especially for Marilyn. In addition to the directions for opening I had taped to the outside, a colorful note was tucked inside each gift to let her know she was in my thoughts.

Marilyn’s top picks among the kit’s morale boosters? “Most useful was probably the radiation cream because it was the most practical,” she says. “Probably the one I enjoyed the most was the fleece blanket. I use it every night when I sit on my living room sofa or lie down to read a book.”

Marilyn’s cancer journey is not over. But even when I can’t stand be­side my best friend, I can still wrap her in a warm fleece hug.

♦ ♦ ♦ ♦ ♦

Linda Slusser lives in Wellington, OH.

This article was published in Coping® with Cancer magazine, September/October 2016.

Wings for Life

Resources for Medical Air Travel

 

Knowledge image

For cancer survivors, distant travel is sometimes necessary to reach a cancer center or hospital for treat­ment or a second opinion that is not available in their local communities. Various air transport organizations pro­vide free or reduced-cost flights to assist people who need help. The earlier you make your need known, the more likely you are to get help. The following is a partial listing of organizations that pro­vide or coordinate flights for cancer survivors and their families.

Air Care Alliance is a nationwide league of humanitarian flying organizations whose volunteer pilots are dedicated to community service. It provides a central listing of free national and regional air transportation services provided by vol­unteer pilots and charitable aviation groups who perform public benefit fly­ing for healthcare, patient transport, and other missions of public service. Visit AirCareAlliance.org to find an organization near you or to complete an online form. If you need further assis­tance, contact mail@aircarealliance.org or call (888) 260-9707.

Air Charity Network is a national net­work of regional charitable aviation organizations that provides access for people in need seeking free air transpor­tation to specialized healthcare facilities. To locate the Air Charity Network or­ganization that serves your area, call (877) 621-7177 or click on one of the regional links at AirCharityNetwork.org/contact-us. You will automatically be directed to the nearest available resource.

Cancer Financial Assistance Coalition is a coalition of organizations helping cancer survivors manage their financial challenges. Its website includes a sec­tion on transportation assistance listed by cancer type or by regional organi­zations according to zip code. Visit CancerFAC.org for links.

Children’s Flight of Hope provides free air transportation to and from medical treatment for seriously ill and injured children. These flights are provided through paid commercial airline tickets for the child and one companion, or through private charter flights. Children’s Flight of Hope contacts the commercial airlines and airport security to make the flight logistics as seamless as possible. On private flights, a Family Flight Liaison offers nonmedical support to the fam­ily and the pilot as needed. Submit an online request or call the mission request line at (919) 460-4334. For further information, call (919) 466-8593 or visit ChildrensFlightOfHope.org.

Corporate Angel Network arranges free travel, using the empty seats on corporate jets, for people with cancer, bone marrow donors, and bone mar­row recipients who are ambulatory and not in need of medical support while traveling to or from an approved cancer treatment center. Eligibility is not based on financial need, and recipients may travel as often as necessary. If seats are available, you may bring an adult companion; children can travel with two adults. Call (914) 328-1313 or contact info&corpangelnetwork.org to register within three weeks of a specific appointment. For more infor­mation, visit CorpAngelNetwork.org.

Footprints in the Sky provides free flights to medical facilities throughout the U.S., using mainly donated charter and corporate jets, for people without the financial capability and resources to facilitate air travel. To fill out flight request forms, or for more information, visit FootprintsFlights.org or call (303) 799-0461.

Miracle Flights flies low-income chil­dren who are struggling with serious illness to specialized medical treatment centers or for second opinions from experts and specialists across the U.S. Qualifying families can receive travel assistance for the child and up to two parents or legal guardians. For more information, call (800) 359-1711 or visit MiracleFlights.org.

National Patient Travel Center provides information about all forms of charitable, long-distance, medically-related transportation and provides referrals to appropriate sources of help in the national charitable medical trans­portation network. For more information, visit PatientTravel.org. To request assis­tance, call the National Patient Travel Helpline at (800) 296-1217.

Patient AirLift Services is a network of volunteer pilots that provides free med­ical flights and air transportation services to qualifying people in need. Apply for assistance online by filling out a request form at PALServices.org, or calling (888) 818-1231. For more information, contact info@PALServices.org.

♦ ♦ ♦ ♦ ♦

Contact each organization to obtain specific eligibility requirements. In addition, check with your local cancer treatment center, hos­pital, or cancer support organizations, as well as commercial airlines, for information about obtaining transportation assistance for can­cer survivors and their families. This listing was compiled by Coping’s editors and may not include all air transportation providers or coordinators.

This article was published in Coping® with Cancer magazine, September/October 2016.

Learning to Love My Body
and Live Out Loud

by Morgan Thompson

Inspiration image

Morgan Thompson

Scared. Confused. Hurt. Ashamed. When I was diagnosed with Hodgkin lymphoma at just 26 years old, I was overwhelmed with so many different emotions, but the feel­ing of shame kept washing over me. I naively believed that cancer was something that happened to “other” people. It had never touched my life in a personal way, and I assumed that if I did the right things (exercise and eat a healthy diet) — it never would.

So when my doctor looked me in my eyes and told me I had cancer, I imme­diately burst into tears. I not only felt terrified, but I also felt embarrassed that now I was branded with a scarlet “C.” Although it’s unclear what causes Hodgkin lymphoma, I blamed myself. I blamed my body. Suddenly, I was different from everyone I knew and thrust into this world of disease – I was now the cancer patient.

After I started sharing the news with friends, I was asked if I would move from my New York City apartment back home to Charlotte, North Carolina, to be closer to my family for chemo treat­ment. The thought actually hadn’t occurred to me. My life, my job, my friends were all in New York. As scared as I was, I couldn’t let cancer take con­trol of my life, and moving home would mean that I let cancer win – and that wasn’t an option.

My decision to take control was a turning point for me. I realized that my embarrassment had morphed into de­termination, and instead of hating my body, I learned to love it. I learned to be grateful for the fact that I could get up every day and put one foot in front of the other. Instead of referring to my­self as a cancer patient, I started to refer to myself as a survivor.

I decided to share my experiences with other survivors and prove that you can live – even thrive – with cancer. So I started a blog called Beating Cancer While Staying Fabulous. The name kind of says it all. My blog became a way for me to document my experience and show everyone that cancer can be a part of your life – but it doesn’t have to be your entire life. I started to live out loud with the intention of making a difference.

My blog also allowed me to connect with Hodgkin lymphoma survivors all over the world – especially other young adults. Although my family and friends were super supportive, I needed to con­nect with others who were walking the same journey. Other young adults who knew what it was like to sit in a chemo infusion center and see no one younger than 60. Who knew how it felt to see friends get pregnant while worrying that treatment could make you infertile. Who knew what it was like to be mis­taken for a visitor, and see the shock and sadness on a nurse’s or doctor’s face when they realize that you are the patient. I finally had friends who had been there and done that, and who made me feel like I could get through this.

Although Hodgkin lymphoma is highly curable and most people achieve remission, my journey wasn’t easy. After countless chemo regimens, a bone marrow transplant, and numerous clinical trials, I finally achieved remis­sion. I reached the finish line in a race I had been running for years, and it was a true celebration. But life didn’t begin with remission, because during my journey, I didn’t let cancer hold me back. Throughout treatment, I made a conscious decision to keep living. I continued to flourish in my career, I got married to my amazing husband, and I learned to cherish the moments that truly matter in life.

Here’s the thing – cancer doesn’t care how old you are, how much money you make, or how good of a person you are. Cancer can happen to anyone. But it doesn’t have to be the end of your story. You have the power to move your life in any direction you dream.

No one’s life is perfect, but it’s the courage you show when the life that you have is not the one you had planned that will get you through the battle.

♦ ♦ ♦ ♦ ♦

Morgan Thompson is a marketing profes­sional, TV host, pop culture aficionado, and cancer survivor. Born in New York, NY, and raised in Charlotte, NC, Morgan has a winning combo of southern charm and New York sass. She has held various mar­keting positions at Parenting, CosmoGIRL!, Redbook, Seventeen, and Cosmopolitan. After Morgan was diagnosed with Hodgkin lymphoma, she launched her blog Beating Cancer While Staying Fabulous (beatingcancerwhilestayingfabulous.blogspot.com) to share her experience with other young adults fighting cancer. Throughout her six-year battle with the disease, she got married, traveled, continued to work, and never lost her trademark smile. Connect with Morgan on Twitter @morgangthompson or Instagram @morganthompson04.

This article was published in Coping® with Cancer magazine, September/October 2016.

Spirituality & Survivorship

Finding Your Way after a Diagnosis of Cancer

by Rev. Jill Bowden, BCC, and Melissa Stewart, LCSW-R

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Surviving cancer – what does that mean?

From a physical and medi­cal perspective, it means to continue to exist without signs or symptoms of the illness that threatened one’s life. Perhaps it means being “in remission,” or “cancer-free.” But once cancer has invaded body, mind, and spirit, the impact lingers in the emotional and spiritual parts of a person well beyond the conclusion of treatment. For many, the experience leaves them forever changed.

We, as human beings, continually review and re-assess our values, beliefs, and priorities over the course of our lifetimes. It’s part of the personal evolution and growth that happens as we age, or as our life circum­stances change. Unfortunately, many of us tend to only re­evaluate our lives when we’re confronted with unpleasant or unwelcome challenges, like cancer.

A cancer diagnosis almost certainly intensifies this life review and reassessment pro­cess. A new sense of urgency may accelerate the decision to set in motion concrete plans for what were once far-off dreams – moving to be closer to family, taking a long-anticipated vacation, or finally starting a personally meaningful project, such as writing a memoir. It may lead to a reordering of pri­orities, to retiring from a career, or to pursuing new avenues of knowledge. It may serve as a stimulus for participating in enriching activities like mindfulness meditation, yoga, or spending more time with the people we love.

Welcome or not, a cancer diagnosis presents an opportunity to construct a totally new system of thought, a new framework on which to build our lives.

Author of Article photo

Rev. Jill Bowden

Welcome or not, a cancer diagnosis presents an opportunity to construct a totally new system of thought, a new framework on which to build our lives. Many people who have lived through cancer find that, even after treatment ends, they are troubled by the same seemingly simple two-word question: “Now what?”

For Debra Jarvis, a cancer survivor and oncology chap­lain at the Seattle Cancer Care Alliance, that question is a big one. In her book It’s Not About the Hair: And Other Certainties of Life & Cancer, she writes, “This is not just a question of activity, but of becoming. You have gotten a reprieve, another chance to look at life with different eyes. Maybe you have awakened to something. The challenge is to stay awake. You can’t go back to your old way of being.”

Author of Article photo

Melissa Stewart

Cancer is often described as a wake-up call. Interest­ingly, people tend to describe spiritual experiences as being wide awake – to life, nature, the universe, the great beyond, or simply our own being. Call it spiritual awakening, if you will.

What is it that inspires in each unique being a feeling of interconnectedness, of belonging to both the macrocosmic universe and the microcosm of human emotion, of com- passion for the suffering of others? Where does one find “at-one-ment,” or the presence of the sacred?

A unique experience of illness, of the potential for a shortened lifespan, of the fear of losing the uniquely essen­tial “self” to the ravages of disease can inspire a sense of purpose or calling that sticks with us for the rest of our lives. It can be a gateway to helping others, to building deeper and more meaningful relationships, and to having a life that is inspiring to others.

Ultimately, and even if it is found nowhere else (whether in congregation with others or in communion with a divine being), a sense of authentic connection with one’s self usually brings about inner harmony and peace of mind. The awareness that comes with truly understanding one­self leads to experiencing ever-deepening significance in life. Spending time with friends and loved ones, being surrounded by nature, observing the world with compassion and wonder, experiencing the transcendent (or that which is beyond one’s own understanding) may put life in balanced perspective.

The soul-deep connection to all that is life can be experi­enced through an appreciation for art, the beauty of music, a deep admiration for the natural world, or an experience that inspires awe, reverence, or pro­found gratitude. Many spiritual practices could be used to achieve a state of peace or spiritual con­nection: prayer, meditation, mindfulness, movement, worship, or simply being of service to others. Whatever the method you choose, spiritual awakening is obtained by being fully aware, in the present moment, and doing that which is unique and joyful in your own mind and heart, to your own spirit.

♦ ♦ ♦ ♦ ♦

The Reverend Jill Bowden is director of Chaplaincy Services at Memorial Sloan Kettering Cancer Center in New York, NY. A board-certified chaplain, she came to ministry with 40 years healthcare experience as a respiratory therapist and a healthcare administrator. Melissa Stewart is an ordained interfaith minister and a senior clinical social worker, providing psychoeducation, practical guidance, counseling, and emotional support to people with cancer and their families, at Memorial Sloan Kettering.

This article was published in Coping® with Cancer magazine, September/October 2016.

You Can Quit Smoking … for Good

by Vance Rabius, PhD, Diane Beneventi, PhD, and Paul Cinciripini, PhD

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“I know I need to quit smoking,
but …”

For many smokers, a cancer diagno­sis becomes a catalyst for giving up tobacco. For some, it’s because of pressure from family, friends, or their doctors. Others may feel ashamed that they continue to smoke after their diag­nosis and hope quitting will relieve them of this shame burden. However, most people underestimate how difficult it is to quit and falsely attribute their failure to do so to a personal weakness. Hence the “but” in the statement above.

It is certainly common knowledge that smoking is bad for you, but the nature of addiction and the unique chal­lenges involved with tobacco cessation are less publicized. Therefore, people who are trying to quit smoking often don’t know what to anticipate when seeking help. Most have made several quit attempts on their own, and usually they assume their numerous attempts are evidence of failure. What most fail to realize is that each quit attempt is an opportunity to learn what has worked and what hasn’t. Therefore, each attempt, instead of being a failure to quit, is sim­ply another step toward reaching their goal of quitting smoking for good.

Author of Article photo

Dr. Vance Rabius

On average, people will make more than six quit-smoking attempts before achieving a longer period of smoking cessation. It may even take as many as 30 quit-smoking attempts over a lifetime to achieve cessation success. This is particularly true for people attempting tobacco cessation on their own, without medical assistance. Tobacco-cessation counseling and pharmacological inter­ventions greatly improve your chances of success on any one quit attempt, especially when used together. Here’s how they work:

♦ Tobacco-Cessation Counseling
The thought of giving up a familiar coping strategy, like smoking, when faced with the stress of a cancer diag­nosis may seem impossible. Yet people also have very powerful and personal reasons for wanting to quit. Some want to do everything they can to remain healthy and available for their loved ones. Others are motivated by the knowl­edge that quitting smoking can improve cancer treatment outcomes. A counselor can support you in quitting by helping you keep your reasons for quitting in focus.

Dr. Diane Beneventi

Tobacco-cessation counselors can also use behavioral strategies to help you identify the patterns that sup­port your smoking and find alterna­tive behaviors to use as substitutes. By strategically altering your be­havior, you can break the patterns that lead to smok­ing, therefore, making smoking less automatic. In other words, a counselor can help you break the “habit” of smoking. Trained smoking-cessation counselors can also help you find new coping strategies (such as mindfulness exercises, deep breathing techniques, and other relaxation practices) to use instead of smoking.

♦ Pharmacological Interventions
The use of quit-smoking medications significantly improves the likelihood that any quit attempt will be success­ful. For example, smoking-cessation medications varenicline and bupropion have both been shown to increase cessation rates. Nicotine replacement therapies, while available over the counter, are often underutilized. Many people are hesitant to use them because they believe they are danger­ous. While it’s true that nicotine, the addictive element in cigarettes, is a carcinogen, nicotine replacement therapies are safe and do not cause cancer.

Dr. Paul Cinciripini

One thing many people don’t know about nicotine replacement therapies is that their effectiveness is greatly increased when they are used in combination and for longer periods of time. For example, the use of a patch and a lozenge is generally more effective than the use of either alone. Because of a lack of accurate information about how to use these medications, many people mistakenly conclude that they don’t work for them, when in fact they likely will work if used correctly. It’s best to ask your doctor or another knowledgeable medical professional to help you choose the best tobacco-cessation method for you.

Anyone who is thinking about mak­ing a change in the way they use tobacco should reach out for help. It is never too late to quit.

♦ ♦ ♦ ♦ ♦

Dr. Vance Rabius is an instructor in the Department of Behavioral Science at The University of Texas MD Anderson Cancer Center in Houston, TX, and the research director for the hospital’s Tobacco Treatment Program. Dr. Diane Beneventi, a licensed psychologist of 20 years, is the supervising psychologist for MD Anderson’s Tobacco Treatment Program. Dr. Paul Cinciripini is a professor, chair of the Department of Behavioral Science, and director of the Tobacco Treatment Program at MD Anderson.

This article was published in Coping® with Cancer magazine, September/October 2016.

Living Well with a Diagnosis of MPN

from People Who’ve Been There

 

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The journey through a diagnosis of a myeloproliferative neoplasm is different for each person, and there is no road map that will work for everyone. Different people need different things. Whether you are the person diagnosed with an MPN or a caregiver, we hope these ten tips that have been shared by others living with MPN will help you along the way.

1 Learn as much as you can about your diagnosis and treatment options.
Be an information seeker. Read about MPN. But be careful about the Internet. If you search for MPN information online, be sure to check the date the information was published, stay with credible organizations that update their sites frequently, and, most important, talk with your healthcare team and ask questions if there is some­thing you don’t understand.

2 Find a specialist in the treatment of MPN.
Since it is a rare disease, you should see a specialist in the treat­ment of MPN. Talk with your doctor about clinical trials, and if one might be a treatment option for you.

3 Actively work with your health­care team.
Depending on your age, your type of MPN, your symptoms, and the stage of your disease, your doctor may recommend a variety of treatments. Once you and your health­care team have agreed on a treatment plan, be sure to follow it. Living with MPN takes a team approach, especially when it comes to your medical care. Be sure to report any side effects or changes quickly.

Living with a myeloproliferative neoplasm takes a team approach, especially when it comes to your medical care.

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Eating a healthy diet can provide much-needed energy and nutrients to your body while you are coping with MPN.

4 Find others in a similar situation.
People with MPN can feel isolated. Loss of hope, loneliness, and worry about the future are some of the social and emotional challenges of living with MPN. Connect with others who can understand what you are going through via the Internet or a local support group.

5 Accept help when it is offered.
Coping with day-to-day tasks when you have an MPN can be hard. Don’t be afraid to ask others for the specific kind of help you want and need. Give your friends and family an opportunity to feel good by accepting their help. Use an online scheduler (such as LotsaHelpingHands.com) to help you get the kind of help you need when you need it.

6 Learn to manage your stress.
To manage stress, you can meditate, do yoga or tai chi, listen to music, visit with a friend, or take a walk. Set aside a por­tion of time every day to practice your stress management techniques. Even a short time can make a big difference.

7 Eat a healthy diet.
Besides its many health benefits, such as providing much-needed energy and nutrients to your body, maintaining a balanced diet is something you can control.

8 Get regular exercise.
Regular exercise can give you an emo­tional uplift, boost your energy, and reduce stress. Finding something you like to do and setting reasonable goals will help you make exercise a part of everyday living. At times when you experience fatigue, a little physical activity can help you feel energized.

9 Don’t sweat the small stuff – focus on what is important to you.
Identify the sources of frustrations in your daily life. Focus on the positive aspects of your life by keeping a per­sonal journal or forming a new habit or hobby. Direct your energy toward activities that improve your quality of life.

10 Live the best possible life every day.
An MPN diagnosis should not put your life on hold. Set goals, build genuine connections, make it a priority to do something that makes you feel good every day. Accept that some days will be better than others but that doesn’t mean you can’t enjoy some small moments every day.

♦ ♦ ♦ ♦ ♦

Want to hear from someone who understands what you’re going through? Visit CancerSupportCommunity.org/myeloproliferative-neoplasms to watch videos of people sharing their experience of living well with an MPN diagnosis.

Excerpted with permission from Frankly Speaking About Cancer: 10 Tips to Living Well With Myeloproliferative Neoplasms (MPN) © Cancer Support Community. For more information about the Cancer Support Community, visit CancerSupportCommunity.org or call (888)793-9355.

This article was published in Coping® with Cancer magazine, September/October 2016.

Life Is about Choices
I Chose … Live

How I Learned to Cope When Faced with the
Stress of Cancer

by Mike Coy, RFC, CPBA

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Heeding his own advice to “enjoy the good times,” Mike swims with stingrays in Cozumel, Mexico, while on a cruise with his daughter after finishing treatment for throat cancer.

I’ve been asked many times by friends and family if I ever wanted to just give up when I was battling cancer. The answer is no. I had a six-month-old grandson, and I wanted to be able to take him to the park. I wanted to be able to play catch with him and watch him grow up. No, giving up wasn’t an option for me. However, I do understand why someone would quit.

It is hard to explain to someone who has not gone through cancer why some people fight (sometimes to the death) and why some people give up (some­times immediately) – why some win and some lose in the battle. The pain associated with cancer could make any­one want to give up, and that’s why it’s so important to find a reason to live and to hold onto that reason for dear life. Cancer destroys your whole body, and you have to keep your mind strong be­cause if that goes, everything goes.

My reason to keep fighting was my faith that God had more in mind for me to accomplish, as well as my desire to see my grandsons grow up. I had faith in my doctors and believed that they knew what steps to take and what treat­ments would get me well. I knew I had to have a positive attitude because of what I read about stress. For me, it was all about focusing on how to stop thinking about how stressed I was and remember how blessed I was instead.

Sitting out on my balcony in Chatta­nooga, TN, watching it snow, watching the Tennessee River flow below me, see­ing the kids play and lovers walk hand in hand meant so much to me during some really tough times. But my tough times were physical. I was not going to allow them to be mental too.

Even if you have cancer, cancer doesn’t have you.

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Mike Coy

Life is about choices – decisions we must make every hour of every day. In some cases, it’s all about cul­ture change, which is not easy to do. But in many cases, it’s the only thing to do. I had to figure out why there was so much stress in my life. I had to fig­ure out where my stress was coming from. Then I had to figure out what to do about it.

I can think back on a day when every­thing was going south – a tough day at work, an appointment that did not work out the way I expected it to work out, and then going home and taking it out on my (then) wife.

But the point I am trying to make is that you need to find what is causing the stress in your life and figure out what you are going to do to fix it. It might be holding your grandbaby in your arms. It might be stopping at Dairy Queen one afternoon and picking up your favorite ice cream. It might be spending some time alone and thanking God for all your blessings. I know that works for me. Try it. It just might work for you too.

Finding the cause and taking steps toward relief are both important factors in stress management and can greatly aid in the fight against cancer.

For anyone facing the trials and trib­ulations of this world, try to stop focusing on how lousy life can be and remember how blessed each and every one of us truly is. As I said, life is about choices – decisions we make that can be good for us or maybe not so good for us. And if I can reach out to just one per­son with my words, then all of this has been worth it.

Today is all we’ve got. Yesterday is gone, and tomorrow is never promised. The canvas we paint can be a blessing or a curse.

I hope you value your life and the people in it enough to get checked regularly and remain healthy. Stop to embrace this opportunity we call life. Remember to thank the loved ones who get you through the tough times. Enjoy the good times. Remember that, even if you have cancer, cancer doesn’t have you. And, when life throws you a curve­ball, my prayer is that you’ll knock it out of the park and proudly proclaim, “I chose … live.”

♦ ♦ ♦ ♦ ♦

Mike Coy is a throat cancer survivor, public speaker, author, and healthcare reform expert. Learn more about Mike at IChoseLive.com.

Excerpted with permission from I Chose … Live, Fedd Books, 2015.

This article was published in Coping® with Cancer magazine, September/October 2016.

Hope for the Future

Fertility-Preservation Options for Cancer Survivors

by Leslie Ayensu Appiah, MD

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My partner and I were married a year ago and have been trying to have a child. I haven’t had a menstrual cycle in several years, and I wanted to make sure everything was fine. I’m not sure if you have my records, but I was treated for Ewing sarcoma when I was seventeen.

This is an opening statement I often hear in my practice as an obstetri­cian and gynecologist. Woven through those sentences are undertones of hope and an almost imperceptible amount of apprehension. Most women know that not having menstrual cycles is not the norm and that it may be a sign of infertility; however, in the busyness of life, they push it to the back of their minds.

Over the last few decades, break­throughs in science and medicine have improved cancer survival rates. The focus has now appropriately shifted to quality of life. The ability to have chil­dren and build a family is an important quality of life indicator for many survi­vors. Fertility preservation improves the chances of having children after cancer treatment; therefore, it is an important – yet sometimes overlooked – aspect of cancer care.

When to Talk about Fertility
A can­cer diagnosis can be overwhelming. It can be difficult to “hear” or process discussions about how your diagnosis may affect your future fertility right after hearing the words “you have cancer.” This is why cancer survivors should have a separate conversation with a reproduc­tive specialist after their initial discussion with the oncologist. Fertility-preservation counseling should occur within days of your initial cancer diagnosis so that fertility-preservation options can be implemented in a timely fashion.

The best time to implement fertility preservation techniques is before you begin cancer treatment.

Author of Article photo

Dr. Leslie Ayensu Appiah

Know Your Options
The best time to implement fertility preservation techniques is before you begin cancer treatment, as this is when you have the most options available and sperm and egg quality are at their best.

Standard fertility preservation options include egg, embryo, and sperm freezing. Testicular and ovarian tissue freezing are investigational options for survivors at high risk of infertility who are not can­didates for standard therapies or who cannot delay cancer treatment to pursue those options. Several pregnancies worldwide have been achieved from ovarian tissue freezing, therefore making it a very viable option.

Many survi­vors express concern that pursuing fertility preservation will delay their cancer treatment. However, the two weeks re­quired for women to freeze eggs and embryos is not prohibitive in most cancer types, particularly as newer technologies have been developed to quick-start the process. For men, sperm banking only takes a few days to coor­dinate and poses no delay. Similarly, ovarian and testicular tissue freezing require no delay.

For those survivors who cannot pur­sue fertility preservation prior to cancer treatment, options remain available. Survivors at high risk of infertility who have undergone a cycle of chemotherapy may still freeze testicular or ovarian tissue. Additionally, recent studies have shown that temporary suppression of ovarian function can improve pregnancy success rates in women with certain types of breast cancer.

Once Cancer Treatment Ends
Moni­toring reproductive function after cancer treatment is an important aspect of sur­vivorship. Regular menses do not predict fertility; therefore, medical evaluation is needed in survivors at risk for fertility loss due to cancer treatment. Routine follow-up with a reproductive special­ist can help identify whether you are at risk and help you develop a long-term fertility plan.

There is currently no gold standard for monitoring fertility after treatment; however, a combination of blood work and ultrasounds may be the best course. For those survivors who have diminished reproductive function, implementing fertility preservation techniques after cancer therapy may be warranted.

Not every cancer survivor wants to have children. However, family building can be a rewarding aspect of survivor­ship for those who desire it. Moreover, regardless of their parental aspirations, cancer survivors experience less regret and greater quality of life when they talk to their doctors about their fertility preservation options, even if none are pursued.

Cancer can do many things, but we can’t allow it to shatter hope. Through a multi-disciplinary team approach, most cancer survivors can hold on to the very real hope of becoming parents after cancer treatment.

♦ ♦ ♦ ♦ ♦

Dr. Leslie Ayensu Appiah is a board-certified obstetrician and gynecologist with specialty training in pediatric and adolescent gynecology, as well as expertise in fertility preservation. She is an associate professor in the Department of Obstetrics and Gyne­cology and the director of Oncofertility and Pediatric and Adolescent Gynecology at the University of Kentucky College of Medicine in Lexington, KY.

This article was published in Coping® with Cancer magazine, September/October 2016.

Exercise and Cancer

What have we learned the past 20 years?

by Claudio Battaglini, PhD, FACSM, and Erik Hanson, PhD, CSCS

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There is no evidence that one type of exercise is superior to another, so you should choose activities that you find enjoyable and that you’ll be more likely to stick with.

Since the first studies examining the effects of exercise in cancer survivors began to be published in the mid-80s, the interest in this in­triguing area of research has grown exponentially. Because exercise is non-invasive, effective, and can be done by cancer survivors in the comfort and convenience of their own homes, the medical community has started to give more attention to the use of exercise as a complementary intervention in cancer rehabilitation. The key benefits of exercise during and after cancer treatment include the alleviation of certain cancer treatment-related side effects, a reduced risk for cancer recur­rence, and improvements in overall functionality, health, and longevity of cancer survivors.

With the field of exercise oncology now entering its third decade, what have we learned during the past two decades of investigating the role of exercise in cancer survivorship? Many excellent scientific reviews on the topic, focusing on traditional exercise interventions with at least one objective measurement of fitness, have been pub­lished in the last few years. All of them show evidence that exercise provides many benefits to cancer survivors. Let’s take a closer look.

Overall Study Characteristics
♦ From the mid-80s to 1999: Most studies had low participant enrollment, the exercise interventions were only aerobic-based training programs, and most studies were conducted in people undergoing active treatment.
♦ From early 2000 to the mid-2000s: Larger sample sizes with different modes of exercise, including resis­tance training, began to be explored, and about half of the studies were conducted in people undergoing active treatment, with the other half includ­ing cancer survivors who had finished treatment.
♦ From the mid-2000s to today: A greater proportion of studies had improved methodological designs, with approximately 70 percent of the studies being randomized clinical trials in a supervised setting. Other types of cancers besides breast and prostate cancer were increasingly studied, and the studies focused on evaluating specific outcomes, for example body composition, immune responses, and exercise adherence.

Throughout the years, the most noticeable effects of exercise training were improvements in fatigue and depression.

Author of Article photo

Dr. Claudio Battaglini

Overall Study Results
Throughout the years, the most noticeable effects of exercise training were improvements in fatigue and depression. Modest but clinically relevant increases have also been ob­served for cardiorespiratory capacity, strength, and lean body mass, as well as decreases in body fat percentage.
For trials that examined the inde­pendent effects of strength training, significant and consistent gains in overall strength have been documented.
Minimal adverse events due to exer­cise have been reported. When adverse events were reported, lightheadedness, low blood pressure, nausea, and weak­ness during exercise were the most common.

Author of Article photo

Dr. Erik Hanson

Based on all of the exercise oncol­ogy studies to date, regular exercise appears to promote many benefits that outweigh the potential adverse events for cancer survivors who are able to safely engage in regular physical activ­ity during and after the completion of cancer treatments. Additional evidence is also available on the importance of being physically active in reducing the risk of cancer recurrence.

It is therefore recommended, according to guidelines set forth by the American College of Sports Medicine, that cancer survivors should engage in at least 150 minutes of moderate inten­sity exercise or 75 minutes of vigorous intensity exercise per week. This would equal to around 30 minutes of comfort­ably paced walking five times a week or about 25 minutes of faster paced walking three times a week.

Important!

Consult your doctor before beginning any type of exercise, even one that you participated in regularly prior to your cancer diagnosis. For those survivors with immune dysfunction, severe fatigue, or other co-morbidities, it is even more imperative that you consult with your doctor before you begin your exercise program.

Cancer survivors should include both aerobic and strength training as part of their exercise routines, as these modes of exercise promote specific benefits that can help survivors improve their overall stamina, functionality, physical and mental health, and quality of life. Still, there is no evidence that one type of exercise is superior to an­other, so you should choose activities that you find enjoyable and that you’ll be more likely to stick with. Consis­tency is the key to reaping the benefits of exercise during and after cancer treatment.

What you are waiting for? Check with your doctor and start your exercise training today. You can also consult with an exercise science specialist to help you design a personalized exercise routine that is both effective and safe for cancer survivors.

♦ ♦ ♦ ♦ ♦

Dr. Claudio Battaglini is a professor in the Department of Exercise and Sport Science at the University of North Carolina at Chapel Hill, full member of the Cancer Prevention and Control program at the UNC Lineberger Comprehensive Cancer Center, director of the UNC Get REAL & HEEL Breast Cancer Exercise Program, codirector of the UNC Exercise Oncology Research Laboratory, and an American College of Sports Medicine fellow. Dr. Erik Hanson is a Kulynych/Story Fellow assistant professor in the Department of Exercise and Sport Science at the Univer­sity of North Carolina at Chapel Hill, as well as a certified strength and conditioning specialist and codirector of the UNC Exercise Oncology Research Laboratory, along with Dr. Battaglini.

This article was published in Coping® with Cancer magazine, September/October 2016.

Chemo Brain

What You Need to Know Right Now

by Gabriela Höhn, PhD

Sound familiar?
I’m just not myself since I started treatment. I’m fuzzy, not as sharp, and everything seems to take me longer. I forget where I put things, and can’t remember peo­ple’s names or conversations I just had with them. I’m usually really organized, and now I can’t find where I put my papers or remember whether I paid all my bills. And I’m so distractible. I can’t seem to focus on any one thing for more than a few minutes. And forget multitasking. I’m lucky if I can just get one thing done without stopping midway and then forgetting where I am. I try to hide it, but family and friends are starting to notice – even my coworkers. Am I losing my mind?

No, but you may be experiencing chemo brain. Here’s what you need to know if you find that your cognitive functioning just isn’t the same since you started treatment.

What is chemo brain?
Chemo brain is a side effect of cancer and cancer treatment that many survivors experience to varying degrees. Typical symptoms are short-term memory problems, difficulties with attention and concentration, slowed mental processing, and difficulties with multitasking.

What do doctors call chemo brain?
Chemo brain is an informal name, of course. Cancer-associated cognitive disorder is the technical term.

What causes chemo brain?
Despite earlier assumptions about chemotherapy being the main culprit, new research suggests multiple causes. There likely is a complex interaction among the cancer itself, can­cer treatments (chemotherapy, radiation, anesthesia, and endocrine therapy, for example), and the body’s biological stress response.

Around 60 to 80 percent of people experience cognitive problems during and just after active cancer treatment.

Author of Article photo

Dr. Gabriela Höhn

How long does chemo brain last?
Around 60 to 80 percent of people experience cognitive problems during and just after active cancer treatment. Most see their symptoms improve within the first year or two after treatment. However, 20 to 30 percent of sur- vivors still experience cognitive problems several years after treatment ends, and some long-term studies show problems up to 20 years later.

Is chemo brain preventable?
We don’t know. Some treatments may have less impact on cognitive functioning, so there may be some flexibility in terms of choosing treatment options, but for now, there’s no firm answer.

Is chemo brain curable?
Again, it’s too early to say for sure. The research is still very new, and we’re only just beginning to understand the mechanisms involved. However, we can effectively treat other conditions related to treatment for cancer. For example, depression and anxiety can contribute to memory problems, so antidepressants, anti-anxiety medications, and supportive psychotherapy can be very helpful for some people. Furthermore, chronic pain and sleep problems can also impair cognitive functioning, and effective treatment options are available for these as well.

Will I ever get back to normal?
In the cancer community, we talk a lot about “the new normal.” Some cancer survivors do return to how they were before diagnosis and treatment. Many, however, may have to adapt to ongoing challenges. Learning good ways to cope effectively with cognitive changes may make all the difference in your quality of life.

Why should I know about chemo brain if we don’t have all the answers yet?
I like to think knowledge is power. Having information about possible effects of treatment on thinking, memory, and attention can normalize symptoms and make you feel less anxious. And knowing that others often experience cognitive changes too can help you feel less alone.

How do I get help for chemo brain?
If symptoms of chemo brain interfere with your everyday functioning during or after treatment, talk to your doctor about a referral. A neuropsy­chologist can conduct a specialized evaluation of your cognitive functioning and make specific recommendations to help you manage chemo brain symptoms. These may include behavioral strategies, environmental accommodations, cognitive train­ing, EEG neurofeedback, medications such as stimulants, or referrals to a psychologist, social worker, or support group.

♦ ♦ ♦ ♦ ♦

Dr. Gabriela Höhn, a cancer survivor, is a licensed clinical psychologist and neuropsychologist in New York, NY, with personal and professional interests in cognitive functioning and coping in cancer survivors. She developed the Chemobrain Workshop series at New York’s Mount Sinai Beth Israel Medical Center. To learn more about Dr. Höhn or to request a specialized Chemo Brain Checklist, visit GabrielaHohn.com.

This article was published in Coping® with Cancer magazine, September/October 2016.

For Women with Gynecologic Cancer

5 Tips for Taking Charge of Your Healthcare

by Stephanie V. Blank, MD, FACOG

Photo by Cancer Type

Dr. Stephanie Blank

A cancer diagnosis is naturally unsettling, evoking a wide range of emotions. Because talking about gynecologic organs is still practically taboo for so many women, a below-the-belt cancer diag­nosis can be even more distressing. Studies consistently demonstrate that many women are reluctant to even ask their doctor questions about gyneco­logic cancer testing, risk factors, and genetic predisposition, much less dis­cuss potential symptoms.

It is important to remember that your diagnosis doesn’t define you. Being true to yourself is essential for a gyne­cologic survivor at any point in her journey. Moreover, I cannot emphasize enough how crucial it is to be your own advocate.

Here are some tips that I hope will help you achieve that goal.

1 Be informed.
Learn all you can about your own disease, including the pathology of it, the various treatment options available for you (with expected outcomes and potential side effects), next steps, and any clinical trials for which you might be a candidate.

2 Find a gynecologic oncologist, and make sure you are com­fortable with your medical team.
Seeing the correct specialist or gynecologic oncologist results in better outcomes. Get a second opinion to en­sure your own comfort level. Too often, women worry about offending a doctor, and that should never be the case. Most doctors will expect you to seek confir­mation of a diagnosis or treatment plan. And again, the more informed you are, the better. As you go through treatment, being fully comfortable with your med­ical team is essential.

Too often, women worry about offending a doctor,
and that should never be the case.

3 Ask questions.
Open commu­nication with your doctor is essential at all times. It is im­portant to plan every visit to your doctor, even writing questions down so you don’t forget anything. If you experience new symptoms or an adverse reaction to treatment, make sure you share this information. Doctors want you to feel well and will be pleased to hear you say you’re feeling fine. But, if you aren’t, be honest with your doctor about how you feel.

It is also a good practice to take some­one with you to appointments. A cancer diagnosis can be overwhelming in itself. As you learn about your specific disease, treatment plan, and next steps, the pro­cess can be even more overwhelming, and it can be tough to absorb it all.

4 Build a support team.
A cancer diagnosis is unquestionably emotional, and having a sup­port team is essential. Family, friends, a religious community – whatever works best for you and makes you the most comfortable – surround yourself with a support team that will help you stay positive. There are numerous re­sources available online, and if group settings suit you, there are support groups with people who will listen to you, answer questions, and provide encouragement. Your medical team should be able to provide information on support services available for survi­vors and families. In addition, many survivors turn to advocacy and support as part of their own healing process, and these women are willing and able to provide support for others going through a similar experience.

5 Focus on wellness.
As you go through treatment, talk to your doctor about how you can maintain a healthy lifestyle. While intense physical activity may not be possible during treatment, many survi­vors find that returning to such activities as walking or yoga is supremely ben­eficial. Some survivors even choose to train for a cancer support run or walk (such as the upcoming National Race to End Women’s Cancer), combining wellness and advocacy. For many women, this type of endeavor can be tremendously empowering.

Coping with gynecologic cancer is an occasion when you need to give yourself time for you – start that art class or cooking class you always wanted to take. Be creative. Celebrate life, and remain positive.

♦ ♦ ♦ ♦ ♦

Dr. Stephanie Blank is a professor in the Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, at the New York University School of Medicine in New York, NY, where she serves as Gynecologic Oncology fellowship director, as well as associate division director of Gynecologic Oncology. Dr. Blank is a full member of the Society of Gynecologic Oncologists and the American Society of Clinical Oncology, as well as a gynecologic oncologist at the NYU Clinical Cancer Center and a principal investigator in numerous cancer research studies.

The National Race to End Women’s Cancer is a run/walk held by the Foundation for Women’s Cancer to raise awareness and research funding to defeat gynecologic cancers. You can learn more about the Foundation at FoundationForWomensCancer.org. For more on the 2016 National Race to End Women’s Cancer, to be held November 6 in Washington, DC, visit EndWomensCancer.org.

This article was published in Coping® with Cancer magazine, September/October 2016.

Advice from a Teenage Cancer Survivor

by Carly Freels

Inspiration image

Carly's oncologist, Dr. Anna Franklin, gives her the all-clear to ring the cancer-free bell at her final appointment.

Nearly 16,000 U.S. children and adolescents under the age of 20 are diagnosed with cancer each year. I am one of them. I was diagnosed with Hodgkin lymphoma when I was 17 years old.

While nothing can fully prepare a per­son for cancer to enter their life, I want to share a few things that helped my family and me cope with my diagnosis.

Friendly Advice for Friends and Family
If you are a family member or close friend of someone recently diag­nosed with cancer, the best advice I can give you is to show them sympa­thy, but don’t treat them differently. Most of the time, you won’t have been in a situation that allows you to say, “I know what you’re going through.” That is more than OK.

While I was going through treatment, I didn’t need my friends and family to be able to relate to my experience. What I needed was people who simply were there for me. People who could say, “I know this is hard, and it may seem unfair, but I am here for you no matter what you need.”

The fact that my friends and family were still able to joke with me, laugh with me, and participate in everyday events alongside me gave me a sense of normalcy in an unsure situation.

Inspiration image

Carly Freels

Once I knew who would face this storm with me, I was comfortable in seeking help and encouragement when I needed it. The fact that my friends and family were still able to joke with me, laugh with me, and participate in every­day events alongside me gave me a sense of normalcy in an unsure situation. Despite my diagnosis, I still longed to have that routine high school life I was used to. By not treating me differently just because I had cancer, my friends and family helped me to hang on to a somewhat normal life.

On Redefining Beauty
One of the biggest obstacles I had to mentally overcome was the inevitable fact that I would lose my hair. For anyone under­going chemotherapy, this is a tough pill to swallow, but it’s especially so for a girl in the prime of her high school years.

I started out wearing a wig that al­most perfectly matched my once long, flowing brunette hair. However, as time passed, hiding behind a wig just didn’t seem right. My cancer was nothing to be ashamed of. To help me keep my hair loss in perspective, I decided to cover my mirror with verses and inspi­rational quotes about inner beauty and confidence. That’s when I began to see my shiny scalp, not as the uncomfort­able elephant in the room, but as a sign of my strength and overcoming.

After only a few weeks, I let go of the wig’s security and found safety in knowing I was fighting a good fight. That decision is still to this day one of the best I have ever made. Letting go of the world’s definition of beauty and redefining it for myself has changed my perspective on so much, even now that I am finished with treatment and my hair has grown back in.

No one ever expects cancer to enter their life. When it does, it becomes a learning process for everyone involved. Have patience with the friends who have trouble relaying their good inten­tions, treasure the ones who never leave your side, and find the beauty in every victory.

♦ ♦ ♦ ♦ ♦

Carly Freels is the author of When Faith > Fear…, an autobiography that touches on how to keep a positive outlook after a cancer diagnosis. To learn more about Carly or to order a copy of her book, visit whenfaithfear.com.

This article was published in Coping® with Cancer magazine, September/October 2016.

Take Control of Chemotherapy-Induced Peripheral Neuropathy

by Cindy Tofthagen, PhD, ARNP, AOCNP, FAANP, FAAN

Knowledge image

Peripheral neuropathy is a common, but often unanticipated, side effect of chemotherapy. Symptoms in­clude numbness and tingling that begin in the fingertips or toes and that may move upward into the hands and feet, and then the arms and legs as the neu­ropathy worsens. Peripheral neuropathy can also affect your balance and fine motor skills, making it difficult to carry out certain daily activities like buttoning a shirt, hitting the right keys on your computer or cellphone, or driving a car.

Talk to your doctor if you are experiencing symptoms of neuropathy. You’ll want to tell him or her how much of your hands or feet are affected, what specific symptoms you’re having, and how the symptoms are affecting your daily activities. If you are currently being treated with chemotherapy, your doctor may need to adjust the dose or try a different chemotherapy drug altogether. For most people who develop chemotherapy-induced neuropathy, symptoms will lessen or resolve over time.

Controlling neuropathy pain usually requires medications that are different from those used for other types of pain.

Author of Article photo

Dr. Cindy Tofthagen

Your doctor may refer you to a neu­rologist (a doctor who specializes in the treatment of diseases affecting the nervous system) to rule out other dis­eases or conditions that may be causing your neuropathy. A neurologist can also help you manage your symptoms.

For some people, chemotherapy-induced peripheral neuropathy can cause a great deal of pain. Controlling neuropathy pain usually requires medications that are different from those used for other types of pain. Two main kinds of drugs are used to treat neuropathy pain: anti-seizure medications and antidepres­sants. These medicines must be taken on a regular basis, instead of as-needed like other pain relievers, and it may take some time before you notice results. Also, not every medicine works for everyone, and different people require different dosages to get pain relief. Your doctor can help determine what type of medicine and dosage you need to con­trol your neuropathic pain.

If neuropathy is affecting your abil­ity to perform normal activities, seek help as soon as possible so that you can get your symptoms under control and get back to living your life. Several different types of healthcare providers can help you manage your neuropathy:
A physiatrist (a physician who spe­cializes in cancer rehabilitation) can help get you functioning at your best.
A physical therapist can help you manage neuropathy by recommending specific exercises to improve your muscle strength and balance.
An occupational therapist can work with you to help you maintain your inde­pendence, adjust to physical limitations, and get back to doing your usual activi­ties as quickly as possible.
A podiatrist can help you take good care of your feet, recommend good foot­wear, and fit you for special inserts that will make walking more comfortable.
Case managers, registered nurses, and social workers can help you identify resources within your community to meet your specific needs and facili­tate communication among you, your healthcare team, and insurance company.
Mental health professionals and support groups can help you cope emotionally with neuropathy.

Always check with your doctor before taking any vitamins, nutritional supplements, or over-the-counter medicine for neuropathy because these may in­terfere with your cancer treatments or may have other potentially harmful effects. Be leery of anyone who tells you they have a “cure” for neuropathy. Numerous unproven treatments are claimed to cure or improve neuropathy; however, these may cost you a lot of money and not deliver the results they promise.

While there is no magic bullet for neu­ropathy, there is a lot you can do to control neuropathy symptoms. You can start with talking to your doc­tor about your chemotherapy-induced peripheral neuropathy symptoms and then being persistent until you get the help you need.

♦ ♦ ♦ ♦ ♦

Dr. Cindy Tofthagen is an associate professor, oncology nurse practitioner, and director of the oncology nurse practitioner concentration at the University of South Florida in Tampa, FL. She is the director of CARE Tampa Bay, a member of the medical advisory board for the Neuropathy Support Network, and con­tributor to the Oncology Nursing Society’s Putting Evidence into Practice guidelines for peripheral neuropathy.

The Neuropathy Support Network is a nonprofit organization that helps people with any form of neuropathy. Visit NeuropathySupportNetwork.org to learn more about neuropathy or to find a sup­port group in your area.

This article was published in Coping® with Cancer magazine, September/October 2016.

How Are You, Really?

Talking with Your Doctor about the Side Effects of Cancer Treatment

by Jolyn Taylor, MD, MPH, and Lois Ramondetta, MD

Knowledge image

How are you? This is often the first thing a doctor says when you arrive for an appointment. While it’s a simple question, it’s one that can be difficult to answer. After all, most people battling cancer are likely experiencing a multi­tude of symptoms and side effects, with some more troubling than others. Should you report all of your symptoms? Only some of them? Which ones?

On top of that, the medical profession doesn’t always make it easy to report symptoms and side effects. While most providers spend years improving surgical techniques, and countless hours keep­ing up with the latest medical research, an inconsistent amount of time is allot­ted to training oncologists on how to identify and improve disease- and treatment-related symptoms and side effects.

Author of Article photo

Dr. Jolyn Taylor

In addition, when a person re­ports a symptom or a side effect to his or her doctor, these reports are commonly referred to as “complaints” in medical documentation. Though this isn’t meant to be a negative thing, the language used can give off that connotation, causing some people to be hesitant in reporting even their more troubling symptoms because they don’t want to be seen as weak or “complaining.”

Author of Article photo

Dr. Lois Ramondetta

However, reporting symptoms and side effects is not a sign of weakness. Think about it. Does admitting that you have trouble getting a good night’s sleep mean you are “giving in” to cancer? Does acknowledging that your pain is too great to handle without intervention mean that the disease is winning? Of course not. There is no winning or losing against the symptoms and side effects that accompany a disease like cancer. There is only managing and treating them.

Also, reporting your symptoms and side effects is not “complaining.” And it doesn’t create an unnecessary burden for your doctor. In fact, the opposite is true. In order for your doctor to address the symptoms and side effects that are diminishing your quality of life, he or she needs to know what matters most to you. Explaining exactly how the side effects of cancer treatment are affecting your life is never complaining. Rather, it’s building a stronger bridge of commu­nication between you and your doctor. Maintaining an open dialog with your doctor is essential to achieving an optimal quality of life during and after cancer treatment.

So the next time your doctor asks how you are, take a moment to answer honestly and completely. After all, what your doctor likely wants to know is “How are you, really?

♦ ♦ ♦ ♦ ♦

Dr. Jolyn Taylor completed her medical doctorate at New York University School of Medicine and her residency in Obstetrics and Gynecology at Weill Cornell Medical College. She is now a fellow in Gynecologic Oncology at The University of Texas MD Anderson Cancer Center, in Houston, TX. Dr. Lois Ramondetta is a professor of Gynecologic Oncology and Reproductive Medicine at MD Anderson and is co-leader of the initiative targeting cancers associ­ated with HPV in MD Anderson’s Moon Shots Program. She is also a member of NRG Oncology’s Cervix Committee, as well as the Cervical Task Force of the National Cancer Institute’s Gynecologic Cancer Steering Committee.

This article was published in Coping® with Cancer magazine, September/October 2016.

The Garden That Heals

by Jenny Peterson

Inspiration image

“Don’t let cancer define you, Jenny. You are more than your diagnosis.”

This was the advice from my doctor when she gave me the news that I had breast cancer, the disease that had killed my mother. It was Friday, May 11, 2012 – I don’t need to look up the date because it’s seared into my memory, like it is for most people with a cancer diagno­sis. I thought, “That’s easy for you to say. You don’t have breast cancer.”

Then I met my oncologist, who said, “Not everything in your world can be about breast cancer.” So clearly I had a theme going here, and it made me think beyond my feelings of fear and panic. Who am I, aside from being a person with breast cancer? Who was I before this diagnosis, and had she changed?

The answer is that I am many things. I am Jenny. I am a gardener. I am a writer. I am a mother. I am a fiancée, a sister, a friend. I am a designer. I am a child of God. I am optimistic, sarcastically funny, and I am a good baker. There’s no reason I can’t still be all of those things even after my diagnosis, right?

Yet I struggled with my feelings of competency, I questioned my physical and mental abilities, and I yearned for the days when the world around me felt secure and recognizable. If you’ve had a cancer diagnosis, you’ve probably felt the same. Your world has changed forever, and you don’t know how you’ll navigate all of the changes. Your body doesn’t move and feel the same, and it certainly doesn’t look the same if you’ve had any amount of surgery. You may question your attractiveness and your vitality, your inner and outer strength.

“Don’t let cancer define you, Jenny.”
So how did I not let cancer define me? Not knowing anything better, I simply kept doing what I knew to do. And one of those things was gardening. Plants, and the act of growing and caring for them, have been a central part of my personal and professional life for a long time. I’m a freelance garden writer and author as well as a garden designer, and I’ve gardened on a 150-square-foot garden as well as an entire acre. I love houseplants, flowers, succulents, and herbs. So I gardened.

For a long time, my gardening didn’t resemble the type of gardening I used to do. I was weak and struggled with some range of motion issues in my left arm where I’d had surgery. I felt a little depressed and lacked energy, and I was sensitive to heat. I was told to not lift more than 10 pounds and to not perform repetitive, jarring motions. That kind of left out shoveling, wheelbarrowing, and plant hauling. What to do, what to do.

I was determined to find some place where I could thrive and experience joy again.

Inspiration image

Jenny Peterson

I’m not going to lie – I had many days when I did not feel like gardening. But I decided to change my approach and focus on small, doable tasks. I could water my front porch plants and tend to my houseplants without any problem, so that’s what I did most days. And little by little, my relationship with plants and my garden became the thing that turned me around – body, mind and spirit. No, it wasn’t easy. Nothing about cancer and cancer treatment is easy. But it was my reality, and I was determined to find some place where I could thrive and experience joy again.

Getting Grounded
After I finished treatment, I thought, “Wow, thank God I’m done with that. Let’s get life back to normal now.” Unwittingly, I was viewing my cancer treatment as a mere inconvenience, a short disruption in my life. It actually disrupted my Universe, and changed it forever. My expectation to begin living my life as though nothing had happened was rudely and swiftly challenged.

The first year after treatment consisted largely of what I had read it might – feeling tired, getting my hair back, dealing with foggy “chemo brain,” rebuilding my strength. It was the second year, though, that threw me for a cosmic loop. My hormones finally crashed after being thrust into chemo-induced medical menopause, my brain seemed even foggier, my emotions were on a roller coaster ride from Hell, and I saw no end in sight. This wasn’t what I’d signed up for! The doctor who called me with my diagnosis said that I would feel better in a year. One year, not two and beyond.

It was during this time that I began working – with the blessing of my oncologist – with a wonderful and gifted holistic practitioner, Dr. Robin Mayfield. Robin and I had been friends for several years, with both of us writing garden blogs and belonging to an Austin area garden blogging group. In fact, it’s ironic that I’m mentioning Robin here, because her blog is about gardening in the Texas heat and harsh environment, and it’s called “Getting Grounded: It’s not for sissies.

Cancer treatment and its recovery are, indeed, not for sissies. It kicked the snot out of me, and it continued to surprise me that it took so long to recover. But Robin told me something that really resonated with me: every day, before you do anything else, get your cup of coffee or tea, and go out into the garden. Don’t do anything. Just check on your roses, appreciate the flowers you just planted, observe how many tomatoes are on the vine, greet your chickens. Get grounded. Feel the ground beneath your feet. It reminds you of who you are and where you came from.

For months, this was my ritual, and I treated it like my homework. Get grounded. This simple yet powerful ritual has a way of whispering in your ear, “Hey, just breathe. One day at a time. It’s going to be okay.”

But what, exactly, is getting “grounded” and how does it work? To answer that, think first about what it means to be “ungrounded.” That’s where you’re in a headspace of feeling angry, anxious, bitter, upset, distracted, unhappy. All those feelings are normal, but they also keep you from being in the here and now. They pull your mind away in a million different directions, and after a while you forget what it means to be present.

Ground Yourself
Go outside. Get barefoot if possible.
Walk on the soil or grass, not pavement.
Feel the ground under your feet.
Breathe in deeply.
Be aware of your surroundings.
Engage your senses (smell, touch, sight, hearing).

So get grounded. Get back to the basics. Take a few minutes for yourself, reminding yourself of what is real right now. Don’t treat cancer and your treatment as merely an inconvenience, because you will be squandering away an opportunity to see a deeper meaning. Will you always feel like doing this? Of course not. But when you least feel like doing something is perhaps when it just may be the most beneficial to you.

♦ ♦ ♦ ♦ ♦

Jenny Peterson is a breast cancer survivor, landscape designer, writer, and speaker. She has written for several lifestyle, home, and garden websites and publications. Learn more about Jenny at JPetersonGardenDesign.com.

Excerpted from The Cancer Survivor’s Garden Companion, St. Lynn’s Press, 2016.

This article was published in Coping® with Cancer magazine, September/October 2016.

The Sound of Healing

A Look at Music Therapy for Cancer Survivors

by Lisa M. Gallagher, MA, MT-BC

Wellness image

The treatments for cancer are often long, uncomfortable, tiring, and boring. But they don’t necessarily have to be. There are things that can help you get through it. Music therapy is one of them.

Music therapy is a complementary medicine technique that involves en­gaging in music through the guidance of a supportive board-certified music therapist. A music therapist can guide you in using music during medical pro­cedures, while waiting for appointments, while preparing for surgery, during recovery from cancer treatment, and as a means of coping with the physical and emotional side effects of cancer and its treatment. Music therapy has been shown to lower stress levels, improve sleep, promote relaxation, and decrease pain.

When I was undergoing radiation treatments for breast cancer, I struggled with finding the right music to use dur­ing my treatments. I didn’t want silence in the room; I wanted to listen to music that would help me relax and would decrease my anxiety so I could lie still for the entire treatment. As a music therapist, I know that a person’s favor­ite music is usually a great go-to choice. However, I also realized that listening to my favorite songs could poten­tially cause me to start disliking them, as they might then remind me of radiation.

Music therapy has been shown to lower stress levels, improve sleep, promote relaxation, and decrease pain.

Author of Article photo

Lisa Gallagher

After speaking with a fellow music therapist, I decided to use music that I rarely listened to – country. And it worked. I even discovered a song that became the theme song for my cancer journey: “Stand,” by Rascal Flatts. A music therapist can also help you find the right music for your situation.

Engaging in music therapy practices like listening to music, making music, music-led imagery, and songwriting, to name a few, is beneficial in a variety of ways. Music therapy can help you manage side effects (like nausea), lower your anxiety, and ease cancer-related fears. It can also give you something positive to focus on during the treat­ment. Focusing on music sends positive energy to your brain, which can help block pain sensations that may also be trying to reach your brain.

We use music every day to help us relax. Music can help you decompress after a particularly stressful day. Or it can pump you up for an upcoming event, activity, or project. Listening to quiet music at night can help you fall asleep. Moreover, pairing calming music with relaxation techniques, such as deep breathing, imagery, or progressive muscle relaxation, can increase relax­ation and improve your ability to fall asleep, and even stay asleep. Music can also be a means of communicating with friends and family. And it can give you the strength, hope, and courage you need to face each day.

Music therapy helped me get through one of the most difficult times of my life. Maybe it can help you as well. Talk with your doctor about integrating music therapy into your treatment plan.

♦ ♦ ♦ ♦ ♦

Lisa Gallagher is a board-certified music therapist and the research program manager for the Arts & Medicine Institute at Cleveland Clinic in Cleveland, OH. She is also a breast cancer survivor.

This article was published in Coping® with Cancer magazine, July/August 2016.

Ken Griffey Sr. Talks Prostate Cancer

by Kaylene Chadwell and Laura Shipp

Celebrity Cancer Survivor

Ken Griffey Sr. (left) with his son Ken Griffey Jr.

A prostate cancer survivor himself, the two-time World Series champion is speaking up about the disease and encouraging others to do the same.

For Major League Baseball fans, “Ken Griffey” is a household name. In the early 90s, Ken Griffey Sr. and Ken Griffey Jr. made history when they became the first father and son pair to play on the same MLB team at the same time. Further cementing their spot in the record books, as Seattle Mariners teammates, they became the only father-son duo to hit back-to-back home runs. The elder Griffey is a three-time MLB All Star outfielder who helped the Cincinnati Reds win two consecutive World Series titles. Griffey Jr. is a Major League Baseball Hall of Famer who also happens to be one of the most prolific home run hitters in the history of the sport.

However, baseball talent isn’t the only thing that runs in the family for the Griffeys. They also share a family history of prostate cancer. “I lost four uncles to prostate cancer,” Ken Sr. tells Coping magazine. “My mother insisted I take my risk seriously and get regular prostate cancer exams.”

Thus, when rising PSA levels led to a diagnosis of early-stage prostate cancer in the summer of 2006, Ken Sr. wasn’t exactly surprised. What did surprise him, however, was just how difficult it was for him to talk about his diagnosis.

“For a lot of men, it’s embarrassing to talk about.”

“Despite how much our family talked about prostate cancer,” Ken Sr. explains, “when it came to my own diagnosis, I was struck by how hard it was for me to speak up and tell my family what was really going on.”

Ken found it especially challenging to share the news with his oldest son, Ken Jr., as he didn’t want his diagnosis to become a distraction for his son on the field. At the time, the younger Griffey was playing center field for his dad’s former team – the Cincinnati Reds. On top of that, the Griffey children had just learned their mom was contending with her own diagnosis of colon cancer.

“I’ll never forget the day I learned that Dad had prostate cancer. It was my mom who broke the news to me, be­cause Dad was focused on being there for everyone else,” Ken Griffey Jr. shares in a press statement. “I know that it can be hard for men to talk about prostate cancer, because men want to be tough. My dad was trying to be strong for us – and over time, he realized it’s strong to speak up.”

Once the elder Griffey began to open up to friends about his diagnosis, he realized he wasn’t the only one who had difficulty talking about this below-the-belt men’s disease. “I had a couple friends that I had played golf with for years who had this cancer, and they had never said a word,” he reveals. “When they heard that I had prostate cancer, that’s when they finally spoke up about it.

“A lot of men don’t talk about pros­tate cancer, especially if they have it,” he goes on to say. “It’s hard for men to talk about incontinence, erectile dysfunction, and all those things because, for a lot of men, it’s embarrassing to talk about.”

In fact, according to a survey by the International Prostate Cancer Coalition, nearly 70 percent of men living with prostate cancer admitted to sometimes ignoring symptoms, rather than tell their doctor about them. In addition, one in five men said that talking about symp­toms like pain makes them feel weak. And more than half said they feel their daily discomfort is just something they have to live with.

Now 10 years cancer-free after robotic prostatectomy, Ken Sr. is trying to change all that – and he’s once again teaming up with his son Ken Jr. to do it. This time, instead of racking up home runs, they’re encour­aging men with prostate cancer to know the warning signs of advancing disease and speak up about their symp­toms as part of Bayer’s Men Who Speak Up movement.

“I’m just trying to help men who have prostate cancer talk to their doctors,” says Ken Sr. “One of the most important things is that I get a chance to talk to a lot of people about prostate cancer. I can share what I went through, and then maybe they’re not afraid to talk to other people about it. That’s the biggest thing for me.”

♦ ♦ ♦ ♦ ♦

Men Who Speak Up is a nationwide movement to raise awareness about the signs and symp­toms of advancing prostate cancer. Learn more at MenWhoSpeakUp.com.

This article was published in Coping® with Cancer magazine, September/October 2016.

The Role of Ritual in Celebration and Healing after Cancer

by Richard Dickens, MS, LCSW-R

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Hearing three dreaded words – you have cancer – is the shared experience connecting all can- cer survivors. The myriad treatments, thoughts, and feelings that follow, however, are unique to each individual, changing often and giving meaning to the common metaphor of cancer as a roller-coaster.

Once this roller-coaster finally ends, and active treatment is finished, many survivors seek ways to celebrate the end of treatment and to acknowledge the strength they’ve found through family, friends, faith, and hope along the journey. Others look for ways to heal, emotion­ally and spiritually. They want to let go of the anger, fear, and loss of innocence that are holding them back from feeling whole again. One way to do each of these is to create a ritual that gives the expe­rience meaning and reverence.

We participate in rituals all the time – holidays, birthdays, sports traditions, special handshakes. Some are done once in a lifetime (like baptism or bar/bat mitzvah). Others are repeated and passed down from generation to gen­eration (breaking the wishbone at Thanksgiving, for example). People who are religious often have rituals or ceremonies to commemorate life transi­tions, from birth, to marriage, to death.

In his book The Bone Clocks, David Mitchell writes, “Hobbies are for plea­sure, but rituals keep you going.” Cancer and all of its changes and uncertainties can stop us from dreaming, planning, and hoping. But invoking a ritual – whether it’s a one-time thing or repeated event – to commemorate the journey, or to simply let it go, can help you keep going.

Author of Article photo

Richard Dickens

Here are some examples of rituals you may find meaningful during your cancer journey:

bullet Throw a celebration party commem­orating the end of treatment. This could be a yearly event marking the date, or simply a one-time occurrence.

bullet Read a favorite card, poem, or letter you received from a loved one during treatment.

bullet People who’ve had a stem cell trans­plant often celebrate a second birthday each year on the anniversary of their trans­plant, marking a second chance at life.

bullet Write a letter to someone who hurt you, maybe a long time ago, and drop it in a mailbox, even if you no longer have an address. Another option would be to write a letter to your cancer.

bullet Place a candle on a boat and set it adrift on a river or lake. The candle can symbolize anything you want to let go of.

bullet Place flowers at a site that holds neg­ative memories for you, and leave your pain, anger, or sadness there with them.

I hope some of these ideas resonate with you and inspire you to create a ritual of your own. Be creative. It is your ritual, and you can do anything you want. You can invite anyone you want, or no one at all. What matters is that you find a way to celebrate where you are in your jour­ney, or just let go of what has passed so you can move on and find meaning in the life you have now.

♦ ♦ ♦ ♦ ♦

Richard Dickens, a licensed clinical social worker, is the Men’s Cancers program direc­tor, as well as a clinical supervisor and the Blood Cancers program coordinator, at CancerCare. He also developed and is the project coordinator for CancerCare’s Mind-Body Project. Richard is a two-time non-Hodgkin lymphoma survivor of over 20 years.

This article was published in Coping® with Cancer magazine, July/August 2016.

Holding on to Hope

by Clare Butt, RN, PhD

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Dr. Clare Butt

Hope. This one little word can hold great meaning, especially for cancer survivors. Though holding on to hope after a cancer diag­nosis can sometimes be challenging, many survivors find their hope grows through the experience.

What is hope?
In her poem “Hope is the Thing with Feathers,” Emily Dickinson likens hope to a bird – a fitting image for how many cancer survivors experience hope. It’s easy to imagine the wings of a bird expanding to the left and to the right, flapping in the air, and adjusting to the variations in the wind to produce flight. In the same way, hope can help cancer survi­vors expand their viewpoint to find new meaning through illness and redefine what is important to them. The capacity of hope to endure is immense; thus, hope can be found in every circumstance, even cancer. How­ever, holding on to hope is not always easy. Some days, it may feel like hope is gone. So how do you hold on to hope when times are tough?

Many people have gone before you; picture yourself among them, after treatment and doing well.

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♦ Look for meaning in something larger than yourself.
This could be connect­ing to nature, to your spirituality, or to a faith community. Things like watch­ing a sunset, walking through the woods, or swimming in the ocean can help you to feel whole. Other meaning­ful experiences might include listening to music, spending time with a friend, or just doing anything that gives you joy. Being connected to something larger than yourself can foster hope.

♦ Anticipate survival.
Many people have gone before you; picture yourself among them, after treatment and doing well. Visualization can be a great tool for enhancing hope. Where would you like to be a year from now? Five years from now? Are there significant events in the future you would like to be around for – your daughter’s wedding, your son’s graduation, the birth of your first grandchild? Visualize yourself at that event.

♦ Ask questions.
You have a right to know about your care. Don’t be afraid to ask the questions that can put your worries to rest. Uncertainty can be re­duced by speaking up for yourself.

♦ Seek out affirming relationships.
Family, friends, and pets can be a source of comfort to get you through hard times. Call that special person who will listen to you and sympathize with your feelings. Ask for help from that someone who you know won’t make excuses. Go out with a friend who agrees not to talk about anything medical. Let your beloved pet bring you the comfort of unconditional love.

♦ Turn to your inner resources.
We all have more hope and strength inside than we might imagine. Be gentle with yourself. Celebrate the little things that bring you joy. What are you thankful for today? Is it a comfortable bed to sleep in, a good cup of coffee, warm slippers on your feet? Forget the mis­takes you may have made, and celebrate the achievements instead. You’re still here, and you’re still you. Now that’s something to feel good about, hopeful even.

♦ ♦ ♦ ♦ ♦

Clare Butt is an oncology nurse who has worked with cancer survivors for over 15 years. She teaches nursing at Holy Family University in Philadelphia, PA.

This article was published in Coping® with Cancer magazine, July/August 2016.

Physical Activity and Cancer

A case for exercising after your diagnosis

by Reid Hayward, PhD

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When exercise was first sug­gested as an intervention for cancer survivors, many people, including some in the medical community, thought it wasn’t a viable option. “How can you ask someone with debilitating fatigue and severe treatment-related toxicities to exercise?” they would say. Many oncologists and other healthcare professionals believed not only that cancer survivors undergoing treatment shouldn’t exercise but also that the survivors themselves wouldn’t exercise during treatment, or for weeks or months after.

We now know this is not the case. Many research studies have demon­strated that exercise alleviates toxicities of the cardiovascular, pulmonary, mus­cular, nervous, and gastrointestinal systems. Others have shown that exer­cise reduces the suppression of blood cell production and results in favorable changes in body composition. Addi­tionally, exercise improves functional capacity, reduces fatigue, and enhances overall quality of life.

Cancer survivors who exercise find themselves in a better mood, with more energy, better able to perform activities of daily living, feeling more rested, and better able to think and concentrate. The reasons for many of these improve­ments center around the fact that the benefits of regular exercise directly counteract the negative side effects of cancer and many of its treatments.

Your Heart
Heart damage is a seri­ous complication of treatment for many cancer survivors. Aerobic exercise can provide a powerful boost to cardiovas­cular fitness. Exercise improves the pumping ability of the heart, increases blood volume, enhances the function of the blood vessels, and increases the number of capillaries. Both aerobic exercise and resistance exercise (or weight lifting) can also increase the amount of muscle in the heart.

Numerous studies show that physically active cancer survivors have a lower risk of cancer recurrence and improved survival compared with those who are inactive.

Author of Article photo

Dr. Reid Hayward

Significant improvements in cardio­vascular fitness can be observed even in cancer survivors performing moderate-intensity exercise. Moreover, a number of studies clearly show that moderate-intensity aerobic training can significantly improve cardiac function, even in survivors diagnosed with heart failure. Additionally, although endurance and re­sistance training have no significant impact on blood pressure in indi­viduals with normal blood pressure, they can lower blood pressure in those with hypertension.

Your Lungs
Lung damage following cancer treatments is most often the result of lung inflammation or pulmo­nary fibrosis, but it can also accompany pulmonary edema. Aerobic and resis­tance exercise both can strengthen the muscles of respiration, or those that help you breathe in and out. This allows them to generate more force to better expand the lungs, which can then bring in more air with each breath. Exercise has also been shown to improve blood flow to the lungs and increase the effectiveness of gas transport through­out the body.

Your Muscles
Cancer and cancer treatments both have been shown to decrease skeletal muscle mass. This can be the result of direct harm to the muscle or a consequence of cancer-related weight loss. A number of research studies show that low- to moderate-intensity resistance exercise leads to significant gains in lean body mass and muscular strength in cancer survi­vors. This is extremely beneficial for survivors who are experiencing symp­toms of muscle loss, malnutrition, or wasting, as the loss of lean mass is associated with higher mortality rates in cancer survivors.

Heart damage is a serious complication of treatment for many cancer survivors. Aerobic exercise can provide a powerful boost to cardiovascular fitness.

Not only does exercise help you maintain muscle mass, but strengthen­ing weakened muscles through exercise can also help your body use energy more efficiently. Lower-body resistance training has been correlated with an increase in the amount of time cancer survivors can walk before they become fatigued. This is because lower-body resistance training improves lower-body strength and endurance, which in turn has been linked to increases in aerobic capacity. Similarly, resistance training of the upper body can help cancer survivors in completing activi­ties of daily living, such as pushing a lawnmower, picking up a basket of laundry, or putting away groceries.

Additional Benefits
In cancer sur­vivors, exercise training programs have been shown to lessen the severity of peripheral neuropathy, reduce the symptoms of chemo brain, increase the number of oxygen-transporting red blood cells, enhance the func­tion of the immune system, reduce nausea, increase appetite, and help survivors maintain a favorable body mass.

While an individual exercise program may not provide all the benefits mentioned above for every cancer survivor, particularly if they are currently undergoing treatment, exercise can help preserve the func­tion of the heart, lungs, immune system, and skeletal muscles, protect­ing them from the functional declines that often happen during cancer treat­ment. Exercise programs can also increase cardiorespiratory fitness in cancer survivors, which is associated with a lower all-cause mortality risk. Moreover, numerous studies show that physically active cancer survivors have a lower risk of cancer recurrence and improved survival compared with those who are inactive.

Exercise training is one of the most underutilized tools to help cancer survivors cope with the nega­tive side effects of cancer and cancer treatments. If you want to see the benefits of exercise for yourself, ask your doctor for a referral to an exer­cise specialist who has been trained to work with cancer survivors, and start your exercise training today.

♦ ♦ ♦ ♦ ♦

Dr. Reid Hayward is a professor of Exercise Science in the School of Sport and Exercise Science at the University of Northern Colorado, as well as the director of the University of Northern Colorado Cancer Rehabilitation Institute, in Greeley, CO. His research focuses on the effects of exercise on cancer- and treatment-related side effects.

This article was published in Coping® with Cancer magazine, July/August 2016.

Caring for Your Loved One with Lung Cancer

 

Photo by Cancer Type

In recent years, there have been some exciting developments in treating lung cancer. But a diagnosis of lung cancer can still be overwhelming and leave feelings of uncertainty and anxiousness. There are important treatment decisions to make, emotional concerns to manage, and insurance and financial paperwork to organize, among other practical con­cerns. However, there are ways to cope through this journey as caregiver, and resources are available to benefit you and your loved one.

The impact of lung cancer can be felt in close relationships as the respon­sibility of providing care falls on your shoulders. As you navigate the peaks and valleys of helping a friend or family member cope with lung cancer, here are some tips to help you effec­tively care for your loved one and for yourself.

Avoid Information Overload
Upon hearing that someone close to you has been diagnosed with lung cancer, you may find yourself search­ing websites to learn more about the disease and treatment options. Looking at lung cancer statistics can leave you or your loved one feeling anxious or even depressed.

Remember that statistics are numbers that catalog thousands of individuals. They do not represent the specific outcome that your loved one will face. It is also important to remember that a survivor’s prognosis can change over the course of treat­ment, especially with the approval of new treatments or by enrolling in clinical trials. Talk with your healthcare team about the specific prognosis, treat­ment options, and managing side effects for your friend or family member.

Be Aware of Stigmas
A lung cancer diagnosis can come with stigmas associated with the dis­ease. As a caregiver and advocate, you may have to overcome prejudice or bias on three different levels.

♦ Society Someone who has never been exposed to cigarette smoke or tobacco products can be diagnosed with lung cancer. The public may automatically assume that a lung cancer diagnosis means the survivor has a history of smoking.

♦ Family The pressures of caring for someone with lung cancer may cause some family members to inadvertently make a loved one feel guilty about a cancer diagnosis, especially if it is a result of smoking. Since cancer im­pacts the entire family, consider talking with an oncology social worker to work through the mix of emotions that come with being a caregiver.

♦ Personal A cancer diagnosis can cause a person to reflect upon past choices to identify what could have led to the diagnosis. Your loved one may feel guilty and think the cancer is deserved. If you notice he or she is taking the blame for their lung cancer diagnosis, work with the health care team to provide appropriate support.

Take Care of Yourself
It is important to not get burnt out when caring for someone with lung cancer. Remember to take care of yourself as you strive to stay on top of tracking doctor’s appointments, treatment schedules, updating family and friends, as well as juggling your own life. As a caregiver, you should prepare yourself to experience highs and lows as part of the cancer journey.

Seek counseling from a professional oncology social worker, delegate care­giving responsibilities to friends and family, and spend some alone time to relax and recharge. Consider joining a support group. You may find it is helpful talking to other caregivers who are going through a similar situation.

♦ ♦ ♦ ♦ ♦

CancerCare offers free face-to-face, tele­phone, and online support groups led by professional oncology social workers. To learn more, call 800-813-4673.

Reprinted with permission from cancercare.org.

This article was published in Coping® with Cancer magazine, July/August 2016.

Finding Freedom in Forgiveness

by Mary Fisher Bornstein, LISW-S, and Betsy Kohn, MA, PC

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We started studying the idea of forgiveness after watching a show on television in which the state of West Virginia caught a serial killer who had been killing women for 20 years. At the end of his trial, the judge offered the victims’ families an oppor­tunity to speak to the killer. Several of them, in tremendous emotional pain, screamed at the man saying they hoped jail would be a life of hell for him.

The last person to speak was an elderly woman who had lost her daugh­ter. In paraphrasing, she said this:

 
I forgive you for killing my precious daughter because now you have been caught and can’t hurt anyone else. You have run my life for the last 20 years, and now I am free. I can let go of the hatred that has consumed me, forgive you, and live in peace again.

We were struck by her calm pres­ence, as it was in direct opposition to the all-encompassing hate and anger displayed by the other families. This got us thinking about the amazing power of for­giveness and the freedom that it can bring.

Author of Article photo

Mary Fisher Bornstein

What is forgiveness?
When thinking about forgiveness, consider the following:
Does it mean forget­ting what has happened, does it mean reconciliation, or does it mean that you are weak and easily manipulated? No.
Does it mean you have let go of resentment and anger, that you are able to be present in the moment, or that you are willing to find a new way of understanding a situation? Yes.
At different times in your life you may choose to forgive yourself, someone else, or a power greater than yourself.

Forgiveness is a process. It is a choice you make each day, and maybe even each moment, throughout your life. When you don’t forgive, you can get stuck in a place that doesn’t allow you to move forward. For people on the cancer journey, forgiveness can become particularly important as peo­ple start to reflect on their lives.

Author of Article photo

Betsy Kohn

How can I learn to practice forgiveness?
First, find a ritual or practice that gives you serenity – something like prayer, meditation, or yoga. Have patience; forgiveness takes time and courage. Ask for guidance from those you trust, and, if necessary, seek professional help. You may take a step backward on your jour­ney to forgiveness, but if you’ve been incorpo­rating forgiveness into your everyday life, you will not fall so far that you find yourself back at the beginning.

Be kind and gentle with yourself. Practicing forgiveness is worth the effort, as forgiveness can help you move toward a healthier, happier, freer life.

♦ ♦ ♦ ♦ ♦

Mary Fisher Bornstein and Betsy Kohn are counselors at The Gathering Place, a cancer support center in Northeast Ohio. For more information or to contact the authors, visit touchedbycancer.org.

This article was published in Coping® with Cancer magazine, July/August 2016.

Metastasis is a FOUR-LETTER Word

by Patricia Ohanian Lundstrom

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You’re a survivor? How long?

This question continues to confuse me. I have no idea how to answer it. I usually say something like, “Well, I woke up this morning, so about five hours now.” People think this is a witty thing I say, but, in fact, it’s the closest to the truth I can get.

Four years ago, my bone scan con­firmed that my breast cancer had spread to my right femur, my left hip, and all up and down my spine. Localized breast cancer is one thing, but an all-out body invasion automatically makes it stage IV. Two weeks earlier, before anyone had seen my bones, my tumor had been a stage II ball of fury in my left breast, and the word “cure” had been bandied about. They don’t use that word when you have stage IV.

But you play the cards you’re dealt, right? And you work your way toward the end. Although with stage IV, the end is a sort of swimmy thing, no longer easily defined. Stage IV means that sur­viving the original onslaught of cooties isn’t enough, you have to be on the look­out. Forever. It’s kind of unfair, that surviving cancer isn’t enough, that it’s not THE END. Stage IV means never having an end, or rather, having an open end.

So when you ask how long I’ve been a survivor, do I count from the moment of my diagnosis? From my last chemo treatment? From the last time I thought about dropping dead?

At any given moment, I am in the throes of survival, just like everyone else. And I look like everyone else. I have hair, boobs, and a significant spare tire, so I look as though I have survived the worst.

It’s kind of unfair, that surviving cancer isn’t enough,
that it’s not THE END. Stage IV means never having an end,
or rather, having an OPEN END.

And I have; I absolutely have sur­vived the worst, so far, and in pretty good shape too. But I can’t help think­ing of how much has changed on the inside, at a very real, physical level.

My body has been breached; my cells have been altered. I have been changed at a molecular level by a transforma­tion not yet understood by science. Every three weeks when I was in treat­ment, in order to battle this attack, in order to save my life, my doctor mixed a combination of poisons – one of which, if it were to accidentally drop onto my skin, would very literally tear my flesh away – and poured approxi­mately two cups of this caustic stew directly into my heart. For three days afterward, my pee was a deadly weapon – contact with my urine could have resulted in sterilization.

Survivor? I’m a gosh darn super­hero! Once you get bitten by the spider, your insides are never the same.

And although I suspect battling in­sane villains is someone’s idea of a challenging storyline, I have yet to see any superheroes signing their children up for the new school year, grocery shopping, making work deadlines, filing the 3,000 pieces of paperwork it takes to run the house and fight a deadly disease, making meals, and kissing booboos. Doing all of this, which is real life, and then every three weeks, saying, “Yes, may I please have some more poison poured directly into my heart?” Survival barely scratches the surface of what cancer patients do every day.

So now that I’m three years out of treatment and life has come back to “normal,” can I claim to be a survivor? It just rubs me the wrong way; maybe because “survivor” has a past-tense connotation. I am surviving, present tense, now and forever more.

You’re a survivor? How long?

All the time.

♦ ♦ ♦ ♦ ♦

Patricia Lundstrom is an author, educator, mother, and wife who doesn’t want to talk about her cancer for the rest of her life but will do so if it teaches somebody something. She is currently writing a book, Cancer is Not the Boss of Me: A Girlfriend’s Guide to Having, Fighting, Living with and Laughing at Breast Cancer, to be published in the fall of 2016. Learn more at Facebook.com/CancerIsNotTheBossOfMe.

This article was published in Coping® with Cancer magazine, July/August 2016.

Creating a Cancer Legacy Project

How Having a Large Creative Goal Can Help You Heal

by Paulette Kouffman Sherman, PsyD

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Paulette enjoys the beach with her two children.

When I was diagnosed with breast cancer, I realized that my life might end up being shorter than I had originally thought. And it became the push I needed to accomplish my dream of leaving behind a legacy of books.

My intuition told me that I should write 22 books to inspire people to love more. I decided I wanted to self-publish in order to make it happen more quickly. And I did all this while working full time as a psychologist and life coach, undergoing chemo and radiation, and being a mom (of two kids under age six) and a committed wife.

Looking back, it seems kind of crazy. But having this passionate focus in my life – and knowing that my kids would have these books and that they might also help others – gave me joy and living energy.

As I finish book number 21 (out of 22) in my legacy project, I’ve begun reflecting on my experience. I’ve come to realize that having a large creative goal – or a legacy project – might help other cancer survivors too. Here are the top 15 benefits that I’ve discovered:

1. It gives you a focus that is bigger than your cancer. When you have cancer, it’s all you and others can think about. If you can create something mean­ingful that is “bigger” than your cancer, it will bring you positive energy to keep loving life.

2. Helping others makes you feel powerful and gives you a sense of purpose. I wrote a four-book series to help other cancer survivors get through the experience so they wouldn’t feel alone. Knowing that my experience could help someone else gave me a powerful sense of purpose.

3. The act of writing (or creating) itself is therapeutic. Research shows that cancer survivors benefit from writing about and reflecting on their experience.

If you can create something meaningful that is “bigger” than your cancer, it will bring you positive energy to keep loving life.

Author of Article photo

Dr. Paulette Sherman

4. Having a long-term goal gives you hope that you’ll be around to complete it. If you’re compelled to see something through, it propels you into the future mentally and emotion­ally. It gives you hope that your body will follow.

5. It helps you see the meaning and lessons in suffering. Some spiritual seekers say Earth is a school where we learn through challenges. Cancer is undoubtedly a challenging experience. It is also a chance to work through karma, learn lessons about life and ourselves, and get clear on what we want our focus to be.

6. Art transforms us, others, and the experience. Art can shape our experi­ence to make it lasting and valuable to others. It can even make pain beautiful if it speaks a truth or makes someone feel understood.

7. Leaving a legacy is a tangible way to still be here. We can leave our legacy creations behind indefinitely, and this is something that cannot easily be destroyed.

8. Passion is vitality. Doing what you love increases your life force.

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Paulette displays a henna decoration on her bald head.

9. Telling your story is healing. Propo­nents of narrative therapy have shown that telling your story is healing. It helps you to master it, to gain a sense of agency, and to be the heroine (or hero) of your life story.

10. Having an audience or tribe helps you feel less alone. Having cancer can be an alienating experience. When you write a book, blog, create a YouTube video, or make art, you may attract an audience who supports and under­stands your experience and what you are trying to say. This can make you feel less alone.

11. It’s good to look back on your testament of your experience. Creat­ing art helps you record your memories of your cancer experience so you can revisit the journey later, with a differ­ent perspective.

12. We most often create from our true self, or higher self. The British psychoanalyst Donald Winnicott spoke about the true self being most alive in our acts of creation. Through creating, we can express our true selves and our true feelings. We can explore our expe­rience without having to please others and without fear of repercussion in the outer world.

13. Accomplishing a significant goal reminds us that anything is possible. If you can do something like write 22 books during cancer treatment and re­covery, you begin to feel that anything is possible and there’s a lot more you can – and will – do.

14. It reminds you that you are not a victim. As a person with cancer, many things are stripped from you. You expe­rience a lot of losses: your hair, your toenails, your eyebrows, your energy. It’s easy to feel like a helpless victim instead of the powerful creator you are. Creating a legacy project reminds you of this distinction.

15. It helps you to heal and create wholeness. Writing, painting, and most other creative acts help you to take pieces of something and make them into a new whole. It is an opportunity to heal your mind, emotions, and spirit, even if your body is still fighting cancer.

Some words of caution:
Do this for you. Don’t do it for outside support or results. Others may find it obsessive or silly for you to spend your energy and time on such a project while you are under­going cancer treatment. They may feel like you are indulging a hobby or setting yourself up for unrealistic expectations.

Don’t feel like you have to get a publisher or make money through your project. Or even have loved ones read or see it. This is all too much pressure.

Do it because you want to. The universe can respond to it – or not. We all need to master becoming an audience of one, needing no applause. Approve of yourself and what’s healing to you. Over time, let’s hope, you will find your tribe.

♦ ♦ ♦ ♦ ♦

Dr. Paulette Kouffman Sherman is the author of The Cancer Path, My Quick Guide Through Breast Cancer, The Create Your Own Cancer Path Workbook, and 18 other books. Book #21, The Book of Sacred Baths: 52 Bathing Rituals to Revitalize Your Spirit will be published by Llewellyn Worldwide in August. She is a breast cancer survivor, psychologist, life coach, wife, and mother. You can learn more about Paulette and her books at TheCancerPath.com, SacredBathing.com, and ParachuteJumpPublishing.com.

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

Tips for Preventing Infection during Chemotherapy

 

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One of the best ways to keep yourself from getting sick is to keep your hands clean.

If you are receiving chemotherapy, you may be at risk for getting an infection. This risk is highest when your white blood cell count is at its lowest. Getting an infection can be a life-threatening complication of chemotherapy.

You are likely to be at risk for infec­tion between 7 and 12 days after you have received each chemotherapy treat­ment – and possibly lasting up to one week – when your white blood cells are at their lowest numbers.

Here are some practical measures you can take to lower your risk of getting an infection.

Wash Your Hands
One of the best ways to keep yourself from getting sick is to keep your hands clean. You should also encourage friends and fam­ily members to keep their hands clean. You should wash your hands with soap and water at these times:
Before, during, and after cooking food
Before you eat
After going to the bathroom
After changing diapers or helping a child to use the bathroom
After blowing your nose, coughing, or sneezing
After touching your pet or cleaning up after your pet
After touching trash
Before and after treating a wound or caring for your catheter, port, or other access device.

Take Care of Your Mouth
Your cancer medication can reduce the number of infection-fighting cells in your blood for a short period, and your body’s ability to combat infection may be lowered during this time. Because of this, you are more likely to get an infection in the lining of your mouth. The most common of these infections is a fungal infection called thrush. Thrush usually appears as a white coating in the mouth and on the tongue.

There are times that the medicine you are taking may cause your gums to become sore and bleed. Your medicine may also cause your mouth to become very sore, causing small ulcers to form. This soreness is called mucositis, and it can be very painful.

Just as your medicine may affect the lining of the mouth, it can also have an impact on the glands that make your saliva. This can cause you to have dry mouth, which may make it hard for you to swallow food and may change the taste of the food you eat.

There are a number of things you can do to keep your mouth healthy:
Brush your teeth and clean your dentures when you wake up, before you go to bed, and after every meal using a soft toothbrush.
Get a new toothbrush every three months.
Use the mouthwash your doctor or nurse recommends to avoid getting mouth sores. If you do develop mouth sores, speak to your doctor about whether to substitute mouthwash for salt- or plain-water mouth rinses, as these will cause less discomfort.
Check with your doctor or nurse about flossing your teeth because your chemotherapy may increase the chances of your gums bleeding when you floss.
Avoid using toothpicks.
Try to stay away from things that may irritate your mouth: alcohol, tobacco, spicy food, garlic, onion, vinegar, crunchy foods, and acidic drinks (such as orange and grapefruit juice).
Keep lips moist by using lip balm.
Try to drink at least eight glasses of fluid a day.
Check your mouth daily for redness, swelling, sores, white patches, or bleed­ing, and let your doctor or nurse know if any of these signs of infection are present.
Check with your doctor or nurse before having any dental work done.

Protect Your Skin
The medicines that you take to treat your cancer may cause changes in your skin. These changes, like dry skin and irritation, can lead to openings in the skin where germs can enter and infection can set in. Making a few changes to your daily hygiene routine as soon as you begin chemotherapy, and throughout your treatment, can help to keep your skin healthy and lower your risk for infection:
Bathe every day with warm water and mild soap.
Avoid soaking in spas or hot tubs.
Use a soft towel to gently wash your skin.
Be sure to clean your feet, groin, underarms, and other sweaty areas well.
After bathing, do not rub your skin with your towel. Instead, pat it dry.
Do not share your bath towel with other family members.
Use unscented lotion or moisturizing cream on your skin after it has dried.

While you are going through chemo­therapy, you need to protect your skin from cuts and scrapes because these are easy ways for germs to enter your body. If you follow a few simple steps, you can protect yourself from injury and infection:
Use an electric razor instead of a blade when shaving to help prevent nicks.
Be careful when handling sharp items.
Use caution when exercising to avoid grazing or scraping your skin.
Be careful when walking on wet or slippery surfaces to avoid falling and scraping your skin.
Do not cut, tear, or bite your cuticles.
Avoid getting manicures and pedicures.
Do not squeeze or scratch pimples.
Wear clothing that is appropriate for the type of activity you plan to do (for example, long sleeves and gloves when gardening to protect yourself from cuts and scrapes).

Watch Out for Fever!
You should take your temperature any time you feel warm, flushed, chilled, or not well. If you have a temperature of 100.4°F (38°C) or higher for more than one hour, or a one-time temperature of 101°F or higher, call your doctor immediately, even if it is the middle of the night. Do not wait until the office reopens before you call.

You should also:
Find out from your doctor when your white blood cell count is likely to be at its lowest, since this is when you’re most at risk for infection.
Keep a working thermometer in a convenient location and know how to use it.
Keep your doctor’s phone numbers with you at all times. Make sure you know what number to call when their office is open and closed.
If you have to go to the emergency room, it’s important that you tell the person checking you in that you are a cancer patient undergoing chemo­therapy. If you have a fever, you might have an infection. This can be a life-threatening condition, and you should be seen in a short amount of time.

♦ ♦ ♦ ♦ ♦

For more tips on preventing infections during cancer treatment, visit PreventCancerInfections.org

Source: U.S. Centers for Disease Control, PreventCancerInfections.org

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

Easing the Pain of Cancer

How Mindfulness Can Help You Manage Cancer-Related Pain

by Emily Cox-Martin, PhD, and Diane Novy, PhD

Wellness image

Pain is a multidimensional experience. It can affect you both physically and emotionally. By the same token, pain can also be treated using more than one method. One strat­egy often used by clinical psychologists and other mental health providers to help cancer survivors manage pain is called mindfulness.

Mindfulness is the practice of being aware of your thoughts, emotions, bodily sensations, and perceptions as they are happening, without judgement. That is to say, mindfulness allows you to notice these experiences in the moment, acknowledging their occurrence, but not necessarily labeling them as good or bad. Mindfulness is about paying attention right now, not getting wrapped up in the past or present.

Many survivors may find that they sometimes think about their cancer-related pain, even when they aren’t actually feeling any. They worry about it coming back, and they worry about it getting worse. This anticipation of pain not only can increase your overall dis­tress, but it can also make you more aware of your pain when it does return or increase. Mindfulness can help keep you in the present moment, focused on how you are feeling right now, and not on the pain you might feel in the future.

Author of Article photo

Dr. Emily Cox-Martin

It is a given in the mental health field that a person’s mood and their percep­tion of pain are connected. When you are depressed or sad, your pain often seems worse. Practicing mindfulness has been shown to improve emotion regulation, increasing positive emotions and decreasing negative ones. Overall, mindfulness is associated with decreased pain intensity in the moment, as well as longer-lasting decreases in perceived pain over time. So you see, it isn’t just a skill to be used only when you are experiencing pain. No, mindfulness can have long-term positive effects on pain management.

Mindfulness Skills
Mindfulness skills can be practiced at any time, in any place. However, if you are just starting, it may be helpful to practice in a warm, quiet location with few dis­tractions (including your cell phone). People often find it most comfortable to practice mindfulness while sitting with their legs and arms uncrossed and resting gently.

Author of Article photo

Dr. Diane Novy

While mindfulness skills can be used in any moment when you are feeling pain, or anxiety related to your pain, you can practice these skills at other times as well. This way, you can have the skill down before the time comes when you really need to use it.

Mindful Breathing
To practice mindful breathing, begin by focusing on your breath, the inhale and the ex­hale. Deeply inhale through your nose, hold your breath a moment, and then exhale slowly through your mouth. You may want to count along with your breath at first – count to three while breathing in, hold for two, and then exhale to a count of four.

Digging Deeper into Mindfulness

The following are recommended books and audio CDs to help you as you begin your mindfulness practice:

Wherever You Go, There You Are: Mindfulness Meditation in Everyday Life by Jon Kabat-Zinn, PhD

Mindfulness for Beginners: Re­claiming the Present Moment – and Your Life by Jon Kabat-Zinn, PhD

The Miracle of Mindfulness: An Introduction to the Practice of Meditation by Thich Nhat Hanh

Mindfulness Meditation for Pain Relief: Guided Practices for Re­claiming Your Body and Your Life by Jon Kabat-Zinn, PhD (Audio)

Mindfulness Meditation: Nine Guided Practices to Awaken Pres­ence and Open Your Heart by Tara Brach, PhD (Audio)

Mindfulness Meditation: Culti­vating the Wisdom of Your Body and Mind by Jon Kabat-Zinn, PhD (Audio)

As you breathe, notice the sensation of the air flowing through your nostrils. Notice the movement of your chest, and the feeling of the air entering and leaving your body. If your mind starts to wander, that’s OK. Just bring your attention back to the breathing activity. See if you can practice mind­ful breathing for five minutes. Then work your way up to seven or even ten minutes at a time.

Mindfulness Body Scan
This ex­ercise is often done lying down, feet extended and hip-width apart, with arms by your sides, palms facing up. (However, feel free to do it sitting down as well.) During this exercise, you scan your body from head to toe – or toe to head – focusing your attention on each part of the body. Notice any tension or tightness in your feet, shins, thighs, etc., all the way up, and focus on softening that tension. Allow relaxation to occur in each muscle group before moving on to the next.

Try to spend about one minute on each body part. See how detailed you can become in your focus. Can you focus on a single foot, a single toe, the toenail on your pinkie toe? Your intention is to become aware of the sensations occurring in each part of your body as you scan through.

Mindfulness is a simple medita­tion practice that doesn’t take a lot of time and can easily be adapted to fit your needs. Practicing mindfulness can help you better manage cancer-related pain. It can also improve your mood and lower your stress. And though mastering mindfulness may take some practice, getting started is as easy as taking five minutes to breathe.

♦ ♦ ♦ ♦ ♦

Dr. Emily Cox-Martin is an assistant pro­fessor in the Division of Medical Oncology at the University of Colorado Cancer Center in Denver, CO. Dr. Diane Novy is a professor in the Department of Pain Medicine at the University of Texas MD Anderson Cancer Center in Houston, TX.

This article was published in Coping® with Cancer magazine, July/August 2016.

Coping® Magazine’s
Guide to Lodging Accommodations

Links to these organizations and additional resources are available at copingmag.com/housing.

 

Knowledge image

Some housing facilities provide a home-like environment for cancer survivors and their families.

There are several reasons why peo­ple with cancer and their families may decide to travel to receive medical care. Some, especially in rural areas, may have limited access to on­cologists and treatment facilities in their area. Others may travel to consult with a specialist, seek a second opinion on a diagnosis or treatment plan, or un­dergo a therapy that isn’t widely available. For cancer survivors and their families, finding accommodations can be a chal­lenge. Many facilities offer lodging for free or for a nominal fee. Each tempo­rary lodging program will have its own rules and criteria to qualify for services.

Many hospitals and American Can­cer Society offices have agreements with nearby hotels and/or campgrounds for reduced rates for people with cancer and their families. Before traveling, contact the hospital’s social worker or the ad­mitting desk for such information. Also, many of the major cancer centers have outpatient lodging run by the institution.

The following is a partial listing of organizations that provide or coordinate temporary accommodations for people with cancer and their families who must travel for medical care.

American Cancer Society Hope Lodge offers people with cancer and their caregivers a free, temporary place to stay when their best hope for effective treatment may be in another city. Accom­modations and eligibility requirements may vary by location. To find a Hope Lodge or to learn more about a specific facility, call the American Cancer Society at (800) 227-2345 or visit cancer.org/hopelodge.

Cancer Financial Assistance Coalition is a group of organizations that help people with cancer manage financial challenges. CFAC offers an online database at cancerfac.org that allows users to search for national or local financial assistance by type of assis­tance needed, such as housing, or by cancer diagnosis.

Healthcare Hospitality Network, Inc. is a nationwide association of nearly 200 organizations that provide free or significantly reduced cost lodging and support services to patients and their families while receiving medical care away from their home communi­ties. Call (800) 542-9730 or visit hhnetwork.org for a directory of members and houses.

Joe’s House, JoesHouse.org, provides a national, centralized list of accommo­dations that cater to people with cancer, their families, and caregivers when traveling away from home for medical treatment. Lodging options range from hospitality houses, hotels, host family matching programs, apartments, and more. Some lodging facilities listed are free of charge; others offer a dis­counted rate. Details on each lodging facility are available with information on amenities, rates, reservation meth­ods, and requirements. Those who do not have Internet access may call (877) 563-7468. A representative will provide you with the lodging facilities listed as well as their reservation information.

The National Children’s Cancer Society helps families battling child­hood cancer by offering direct financial assistance for non-medical expenses associated with treatment, including lodging, transportation, and food. Visit thenccs.org or call (314) 241-1600 to request assistance.

Ronald McDonald House Charities provides a “home away from home” for families of seriously ill children receiving treatment at nearby hospitals. In return, families either stay at no cost or are asked to make a donation of up to $25 per day, depending on the house. To find a Ronald McDonald House near you, visit rmhc.org or call (630) 623-7048.

♦ ♦ ♦ ♦ ♦

Contact each organization to obtain spe­cific eligibility requirements. In addition, check with your local cancer treatment cen­ter, hospital, American Cancer Society office, or other cancer support organization for information about lodging or obtaining financial assistance for lodging for cancer survivors and their families. This listing was compiled by the editors of Coping® and may not include all lodging providers or coordinators.

This article was published in Coping® with Cancer magazine, July/August 2016.

A Buddy System for Courage

by Pamela Davis, EdD

Inspiration image

Dr. Pamela Davis

When my oncologist suggested chemotherapy, I panicked. My perceived future played like a movie in my mind, fast-forwarding then stopping on scenes of frailty, vomiting, total loss of appetite, and incapacitation. As I began treatments, I still had visions of potential pain even though doctors and breast cancer survivors assured me that the chemo I was being prescribed wasn’t the monster I had imagined. Side effects, they explained, were often minimal, and co-therapies alleviated even severe reactions in most people.

But no amount of statistical data or anecdotal evidence could stop the melodrama replaying in my mind. Intellectually I knew that worry was not productive, so I challenged myself to adopt a new way of thinking, or at least find new things to think about. I tried to change my own mind, but it wasn’t until I found an accountability partner that I began to see success.

The theory behind accountability partnerships suggests that, when mak­ing difficult transitions, people are more successful if they have group support as they adopt new habits. This concept was one I was already familiar with. I exercised more consistently with a workout partner. And I completed my Doctor of Education dissertation with support from a weekly writing group. By the time I read that people with cancer benefitted from similar “buddy systems,” through not only decreased psychological stress but also alleviation of mild physical symptoms, I had already campaigned for an accountability part­ner of my own. Here’s how it happened.

I wanted to change the horror show that played in my mind
every time I thought about chemotherapy.

I evaluated the change I desired.
I wanted to change the horror show that played in my mind every time I thought about chemotherapy. I didn’t blame myself for being scared; my re­action was perfectly reasonable. Adverse side effects are a legitimate concern when considering any medication, especially one as toxic as chemotherapy. I needed to change the way I processed my anxiety, not dismiss it.

When looking for an accountability partner, I kept in mind that I needed someone who also had reasonable con­cerns about something going on in their life. Together, my partner and I had to be committed to remembering that life’s pleasures deserved focused attention, even in the face of fear.

My accountability partner and I agreed on mutually beneficial solutions.
My partner and I were dealing with different life issues. She was a small business owner being forced to close an established shop and begin again in a new location. She was worried about her livelihood. I was worried about my life.

When making difficult transitions, people are more successful
if they have group support.

Our partnership worked because we both had good reasons for our concerns. Neither of us were at fault for our pre­dicaments, and, most importantly, we both wanted to help calm our minds by finding time during the day to focus on the good in life. She chose to state her daily gratitudes; I chose to recall my best moments. We texted each other every day.

We set a task that was challenging yet easy to sustain.
I was so overwhelmed with worry that I wasn’t sure that texting my best moment each day would calm my fears; I wasn’t even sure I could find any “best moments” to text. What I was sure of, however, was that I could send a text every night about something that I qualified as “not the worst thing that happened.” And that’s where I began.

Texting was our only action. We didn’t cheerlead or give advice. We kept the rhythm of nightly texts for 30 days. There were no discussions of cancer treatments or business plans, at least not in the context of our partnership.

As time went on, it became easier for me to recognize things I enjoyed each day because I knew I had to report at least one. This created a sort of cognitive dissonance with the worry narrative playing in my mind. I still felt fearful at the thought of chemo. However, what my accountability partner did for me was help me bal- ance my terror of treatment with a keen awareness that there was more to life with cancer than the side effects that aroused my fear.

♦ ♦ ♦ ♦ ♦

Dr. Pamela Davis is a stage II breast cancer survivor. She blogs about her experience at CrowdsourcingCancer.com.

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

Feeling Fatigued?

Here are some strategies to help you cope.

by Ann M. Berger, PhD, APRN, AOCNS, FAAN

Wellness image

Does cancer or cancer treatment leave you feeling exhausted? Do you feel physically, emotionally, or mentally tired? Do those feelings reduce your ability to participate in your usual activities? If you answered yes to these questions, you may be experi­encing what your healthcare team refers to as cancer-related fatigue.

Many cancer survivors say they experience fatigue at diagnosis, during treatment, and even after treatment ends. A large number of survivors say that fatigue is more distressing than all the other cancer symptoms and treatment side effects they experience. Although most survivors report lower fatigue after the end of active treatment, some continue to experience fatigue that in­terferes with usual functioning for years.

The first step to combatting fatigue is to be aware of it. The next step is to tell your doctor or nurse that you are experiencing fatigue. Your healthcare provider will then assess your fatigue and help you come up with a fatigue-management plan. For most people, managing fatigue is a balancing act between conserving energy and partici­pating in physical activity and exercise.

Managing fatigue is a balancing act between conserving
energy and participating in physical activity and exercise.

Author of Article photo

Dr. Ann Berger

Conserving Energy
It’s important to set priorities for what you want to spend your energy doing, and then pace your­self throughout the day so you’ll have enough energy to do those activities. Knowing your usual patterns of fatigue will make it easier to plan your daily activities in order to best conserve en­ergy. You can keep track of the times of day when you feel the most fatigued, as well as the activities you find most draining, by recording them in a journal, computer program, or smartphone app. This will allow you to easily see when your fatigue is better or worse and plan accordingly. Try to schedule high-energy tasks, such as shopping or exercise, during times of the day when your fatigue is usually lower.

Another aspect of managing fatigue is learning which activities worsen your fatigue and reducing the time you spend doing them, or simply delegating those tasks to others. It’s especially important to delegate energy-draining tasks when your fatigue is moderate to severe. The goal is to remain as active as possible by learning to balance activity with rest in order to avoid overexertion and, therefore, more severe fatigue.

Exercise
Research has confirmed that regular physical activity is the most effective strategy for reducing physical fatigue in cancer survivors. All survivors are encouraged to begin, or continue with, an exercise program that includes both resistance training (such as light weightlifting) and endurance activities (like walking, jogging, or swimming).

Many communities offer exercise and yoga classes for adult cancer survivors. However, since exercise programs are not one-size-fits-all, talk with your doctor or nurse before start­ing any exercise program, even one that is geared toward cancer survivors. Your doctor may suggest you meet with a rehabilitation specialist to help you develop an individualized exercise plan that allows you to increase your physical activity safely without worsen­ing your fatigue.

Exacerbating Factors
If your fatigue is moderate to severe, your doctor may want to address other factors that could be exacerbating your fatigue. These may include

  • pain
  • emotional distress
  • anemia
  • sleep disturbances
  • other chronic diseases or conditions
  • deconditioning (from a lack of physical activity)
  • nutritional deficits or imbalances

If you have other chronic diseases, such as hypertension, diabetes, or arthritis, it’s important that your symptoms be well-controlled so they don’t worsen your cancer-related fatigue.

Cancer-related fatigue is not a trivial issue. It is very important that you dis­cuss your fatigue – and the problems it may be causing – with your health­care provider, especially if your fatigue is severe or if you are so ex­hausted you can’t function in your usual activities. Managing fatigue is critical to your well-being. By working with your doctor to develop a fatigue-management plan, you can reduce the distress caused by cancer-related fatigue so you can get back to enjoying life.

♦ ♦ ♦ ♦ ♦

Dr. Ann Berger is a professor and Dorothy H. Olson Endowed Chair in Nursing at the University of Nebraska Medical Center in Omaha, NE.

This article was published in Coping® with Cancer magazine, July/August 2016.

Spiritual Care for Cancer Survivors

Finding ways to nurture your spirit can bring wholeness and wellness during cancer treatment and recovery.

by Walter V. Moczynski, DMIN, BCC

Author of Article photo

Dr. Walter Moczynski

Life is filled with challenges. Like­wise, the cancer journey can have many pauses or jolts that can disrupt your inner peace, drain your strength, cause you to question your meaning and purpose, and cloud your relationships and your future. No matter where you are on the journey, when you find yourself in a challenging situation that stops you in your tracks, you can draw upon spiritual resources within and around you to move beyond surviving to living again. But in order to do that, you must tend to your spirit.

Spirituality can mean different things to different people. For many, spirituality means connecting to a transcendent deity or God. For others, it is tapping into a vast expanding cosmos or to the environment around them and all living creatures. Others may look inward, finding spirituality within a beating heart or in every breath.

Regardless of whether your sense of spirituality comes from a particular religion with rich traditions, rituals, and community or simply from within your­self, finding ways to nurture your spirit can bring wholeness and wellness in the course of cancer treatment and recovery.

Initiate sacred time and space in your life.
Many of us are inundated with endless daily tasks in caring for ourselves, for our livelihoods, and for others. Trying to find time for yourself in a society that values busyness can be daunting. Add to that an additional level of medical appointments, tests, treatments, recovery, and more appoint­ments, and your calendar is likely beyond full. But, no matter how busy you are, you can – and must – initiate sacred time and space for yourself.

No matter how busy you are, you can – and must – initiate
sacred time and space for yourself.

Establish a time and space to settle your thoughts, reclaim your breath, and connect to your spirit in a peaceful way. Your sacred space is not limited to a fixed time or location. It can be morning, noon, or evening. You can hold this space in your home, or you can carry it to other places, like the waiting room, for exam­ple. While some people embrace the stillness of the day, your personality may move you to go for a run, swim, or walk.

Once you have initiated a time and place for your spiritual self-care, be peaceful and free. Allow yourself to experience this peace with simple breath repetitions, meditation, or prayer. Let your thoughts come to the surface and then drift away to be connected with your spirituality. Free yourself to move from the “why me?” of cancer to the “what now?” Begin to embrace life, family, and friends in a new light, set new goals, and love yourself.

Uncover meaningful signs and symbols.
Signs and symbols are robust ways to have a tangible connection to your spirituality. They allow your senses in be in tune with your thoughts. Yours may be a sacred written word, phrase, object, poem, prayer, photo, work of art, or song lyric. Find one or more that reminds you of a sacred connection or that represents comfort, joy, strength, or hope.

Discover spiritual resources.
Though you may be surrounded by family members, friends, and medical caregivers along the cancer journey, you may still feel alone in the midst of many people. Reach out to foster relationships that are important to you. Find a friend, clergy member, or chap­lain to be a spiritual guide. Explore sacred texts, inspirational stories, rites and rituals, worship, music, and jour- naling that connect with you. Follow creative pursuits to nourish your spirit and deepen your understanding of the world around you. You may also want to consider connecting with a spiritual community, such as a church, mosque, sangha, synagogue, temple, or other assembly of worship to deepen your spirituality and break that feeling of isolation.

You are not alone on this journey. An eternal presence of hope and love is woven within many religious tradi­tions and spiritual practices. You need simply to find the ones that resonate with you.

♦ ♦ ♦ ♦ ♦

Dr. Walter Moczynski is the director of the Center for Spiritual Care at the Dana-Farber Cancer Institute in Boston, MA, and a field education supervisor at Harvard Divinity School in Cambridge, MA.

This article was published in Coping® with Cancer magazine, July/August 2016.

Food for Life

Eating Well during Cancer Treatment and Beyond

by Maria Petzel, RD, CSO, LD, CNSC, FAND

Wellness image

When you’re undergoing can­cer treatment, so many things can seem out of your control. However, one thing most survivors can control is nutrition.

During treatment, making the right food choices can help you manage symptoms, improve your tolerance of treatment, and increase your quality of life. Once treatment ends, good nutri­tion can help rebuild your body after cancer; it may also decrease your risk of some cancers coming back. Making nourishing food choices is one way you can play an active role in your treat­ment and recovery.

Eating to Ease Side Effects
Good nutrition can help you cope with some common side effects of cancer treatment, such as taste changes, sore mouth or throat, and poor appetite. Nausea, diarrhea, and constipation can also be relieved by combining the right food choices with proper medications.

♦ For taste changes
Rinse your mouth with a baking soda and water solution (or water with lemon if you have no mouth sores) before and after meals. If foods taste metallic, use plastic utensils and avoid drinking from metal con­tainers. To enhance dull taste, add tart foods and condiments (such as pickles, lemons, and vinegar) to your meals. This is also a good time to try new foods or foods you have previously disliked, as they may taste different to you now.

Making the right food choices can help you
manage symptoms, improve your tolerance of treatment, and
increase your quality of life.

Author of Article photo

Maria Petzel

♦ For sore mouth or throat
Eat soft, moist foods with extra sauce, dressing, or gravy. Instead of eating hot foods, eat foods that are room temperature or chilled. Avoid irritating foods and drinks, such as alcohol, citrus, caffeine, toma­toes, vinegar, and hot peppers.

♦ For poor appetite or weight loss
Try to eat meals and snacks in a peaceful, low-stress environment. You may be able to boost your appetite by walking or exercising for a few minutes before each meal. Eat frequent, nutrient-dense meals and snacks with protein. If needed, replace some small meals with liquid nutrition drinks or homemade smoothies fortified with protein, and without add­ed sugar. Increase your calorie intake by adding granola, dried fruit, avocado, or healthy oils (such as olive oil or canola oil) to meals and smoothies.

♦ For nausea and vomiting
Small, frequent meals and snacks at room tem­perature are usually better tolerated by those experiencing cancer-related nausea and vomiting. Eliminate offend­ing odors in the room where you eat, or where food is being prepared, by open­ing a window or running a fan. Do not fill up on liquids during mealtimes; drink in between meals instead. If your stomach is empty, start by eating dry toast or a few crackers before com­mencing with your meal. Avoid overly sweet, rich, greasy, or spicy foods. Some people may find tart and tangy foods to be helpful in abating nausea. In addi­tion, drinking ginger tea or ginger ale may help ease nausea.

♦ For diarrhea
Eat foods that are high in soluble fiber, such as oats, bananas, apples without the peel (or applesauce), and citrus fruits without much membrane. Drink plenty of fluids. Drinks that have electrolytes (such as low-sugar sports drinks or oral rehydration solutions) may work best. Avoid hot liquids. Decrease or avoid sugar-sweetened beverages, foods sweet­ened with sugar alcohol, and foods high in insoluble fiber (such as raw veg­etables, thick-skinned fruits, seeds, and high-fiber whole grains, such as bran cereal). If you are lactose intolerant, use lactose-free dairy products or take lac­tase pills with meals that contain dairy.

♦ For constipation
Increase fluid intake, especially warm and hot liquids. Eat prunes or drink prune juice. If fluid in­take is adequate, gradually increase intake of foods high in insoluble fiber, such as those listed above. To avoid additional discomfort when constipated, avoid gas-forming foods and behaviors, such as drinking through straws, chew­ing gum, and drinking carbonated beverages.

Eating Well after Cancer
Even after cancer treatment is complete, nutrition continues to play an important role in health and wellness for survivors. Eat­ing well can help prevent new cancers, lower your risk of cancer recurrence, and protect against heart disease and other health conditions. After cancer, you should strive to eat a plant-based diet that includes two and a half to four and a half cups of vegetables and fruits each day and that is high in whole grains. You should also limit your con­sumption of red meat, processed meat, and processed foods, as well as foods that are high in sugar, fat, or salt and those that are low in fiber. It’s also important to be physically active and to maintain a healthy weight.

♦ ♦ ♦ ♦ ♦

Maria Petzel is a senior clinical dietitian at The University of Texas MD Anderson Cancer Center in Houston, TX. She is certified in both oncology nutrition and nutrition support.

To create your own healthy eating plan during or after cancer treatment, consult with a registered dietitian, preferably one who is a certified specialist in oncology nutrition (CSO). Registered dietitian nutritionists (RD or RDN) are food and nutrition experts who can help translate the science of nutrition into practical, individualized solutions for survivors and caregivers. Ask your doctor for a referral.

This article was published in Coping® with Cancer magazine, July/August 2016.

Breathing Easier When You Have Lung Cancer

How Pulmonary Rehabilitation Can Help

 

Photo by Cancer Type

Your rehabilitation team will give you a physical activity plan that might include exercises using a treadmill, stationary bike, or weights.

Information from LUNGevity.org

Having the best quality of life possible – both during and after treatment – is a goal for most people living with lung cancer. An im­portant component of that is being able to breathe well.

You can learn to manage your breath­ing through pulmonary rehabilitation, which is a medically supervised program to help people with lung cancer improve their overall physical, mental, and social functioning. The goals of a pulmonary rehabilitation program are to help you improve your functional capacity and help you understand and manage your disease. Therapists will teach you about your lungs and how to exercise and do activities with less shortness of breath.

Many hospitals and healthcare pro­viders offer pulmonary rehabilitation services. Ask your healthcare team for ones in your area that you may be eligible for.

Components of the Program
A physician-supervised program begins with an initial assessment by a registered nurse and exercise physiologist. The central components are a safe, super­vised plan and exercise tailored to each individual and monitored by a team of professionals trained in chronic lung diseases.

In addition, a full range of group education classes (including nutrition, medications, chest physiotherapy, anatomy and physiology of the respi­ratory system, and inspiratory muscle training) may be available and taught by dietitians, health psychologists, nurses, and exercise physiologists.

What Are the Benefits?
The focus is to combine exercise and education to help you manage your disease and increase your quality of life. It may not sound like much, but 30 percent improvement in your ability to walk allows you to get your daily activities done without as much fatigue, shortness of breath, or anxiety.

Pulmonary rehab exercises increase your heart, lung, and circulatory func­tioning level. Start at a slow, comfortable pace, and gradually increase your time and intensity. Consult with your medi­cal care provider prior to starting any exercise program.

What to Expect
Pulmonary rehabili­tation can have many parts, and not all programs offer every part. Here are some of the elements a pulmonary rehabilita­tion program may include.

♦ Exercise training
Your rehabilitation team will give you a physical activity plan tailored to your needs. They’ll design the plan to improve your endur­ance and muscle strength, so you’re better able to carry out daily activities. The plan will likely include exercises for both your arms and your legs. You might use a treadmill, stationary bike, or weights to do your exercises.

If you can’t handle long exercise sessions, your plan may involve several short sessions with rest breaks in be­tween. While you exercise, your team may check your blood oxygen levels with a device that’s attached to your finger. You’ll probably have to do your exercises at least three times a week to get the most benefits from them.

♦ Nutritional counseling
The data your pulmonary rehabilitation team gathers when you start the program will show whether you’re overweight or under­weight. Both of these conditions can make it hard for you to breathe.

If you’re overweight, fat around your waist can push up against your diaphragm, giving your lungs less room to expand during breathing. Your team may recommend a healthy eating plan to help you lose weight.

You also can have breathing prob­lems if you’re underweight. Some people who have chronic (ongoing) lung diseases have trouble maintaining weight. If you lose too much weight, you can lose muscle mass. This can weaken the muscles used for breathing.

If you’re underweight, your team may recommend a healthy eating plan to help you gain weight. They also may give you nutritional supplements to help you avoid weight loss and loss of muscle mass.

♦ Energy-conserving techniques
One way to help prevent symptoms like shortness of breath is to find easier ways to do daily tasks. Pulmonary rehabilita­tion programs often give you tips on how you can conserve your energy and breathe easier. These tips include ways to avoid reaching, lifting, and bending. Such movements use energy and tighten your abdominal muscles, making it harder for you to breathe.

Stress also can use up energy and make you short of breath. Many pul­monary rehabilitation programs teach relaxation skills and ways to avoid or relieve stress.

♦ ♦ ♦ ♦ ♦

Reprinted with permission from LUNGevity.org.

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

When Cancer Affects Your Sexual Health

by Mindy R. Schiffman, PhD

Wellness image

It is important to stay physically close, even when sex is not on the agenda.

A cancer diagnosis is life changing. In addition to the emotional jolt of confronting your own mortality, you may experience physical changes that affect your body image and sexuality. The sexual response is exquisitely sensitive to change, even under “normal” circumstances like a new partner, a different room in your home, or even the time of day. Suffice it to say, cancer and its treatments can have an enormous impact on sexuality. And if you’re in a romantic relationship, your partner may also be left reeling in cancer’s wake.

Who is at risk for sexual dysfunction after cancer treatment?
Those with dramatic changes to their bodies, or whose cancer affects a reproductive organ, are at greater risk for sexual prob­lems following treatment. Moreover, if your romantic relationship, body image, or sexual functioning were already troubled, cancer will likely exacerbate those problems. Chronic pain or fatigue, as well as untreated depression or anxiety, can also impede a cancer survivor’s re­turn to a healthy post-cancer sexual life.

What are some common sexual problems men and women face after cancer treatment?
Women are apt to feel less desire to be sexual, as well as decreased sexual pleasure. They may also experience pain during penetration due to a decrease in the body’s natural lubrication. Men are more likely to worry about getting and maintaining an erection, which can lead to avoiding sexual encounters. They may also ex­perience a decrease in sexual desire.

Author of Article photo

Dr. Mindy Schiffman

What are some things my partner and I can do to reestablish sexual intimacy?
It is important to stay physi­cally close, even when sex is not on the agenda. Continue to kiss, touch, and caress each other. Engage in activities outside of the bedroom that might help nurture your sexual interest. Write each other love notes, go out dancing, enjoy a romantic dinner. You and your partner may also need to reestablish how to initiate sex and redefine what your focus is during a sexual interaction. This means you have to talk to one another – about sex.

Many people think they shouldn’t have to talk about sex; lovers should just know what to do. However, sex therapists have long advocated that communicating your sexual concerns and desires is the gateway to better sex. Talk to your partner about your worries, your wishes, and your desires. Initiate these conversations outside of the bedroom, not in the midst of a sexual interaction, and speak in a non- confrontational, conversational tone.

After cancer, you may also have to change how you think about sexual en­counters, specifically, when they should occur and what you feel comfortable doing. Some people believe that sexual encounters should be spontaneous; how­ever, after cancer, desire just may not be there. Don’t wait to be “in the mood” to initiate sexual or sensual contact. Instead, plan some time for sensual interludes that may (but do not necessarily) lead to a sexual interaction. Before each one, discuss your sexual limits as you work your way back to a more spontaneous, fluid sexuality. For example, you may want to begin with kissing and non-genital touching, then gradually move to increased levels of sexual intimacy. When you set aside time to focus on intimacy, keep your thoughts on sexual images or fantasies; with touch, arousal is likely to follow.

You may also need to reframe your definition of sex. Sex is not just inter­course. Instead, think about sex as sensually pleasing activities that you and your partner take turns giving and receiving. The focus of sex should be on intimacy and pleasure, not a specific outcome. This will help take the pres­sure off “performance.” Penetration and orgasm are not the goals; pleasure is.

As you become more comfortable with your post-cancer body and begin to reestablish inti­macy with your partner, experiment with different positions to attempt intercourse. Always use a water-based lubricant, which increases arousal and decreases pain. And be sure you are both ready for pen­etration before proceeding.

You can expect that there may be awkward moments. You or your partner just may not respond as you once did, or even as you would like to. Try to maintain a sense of humor. Remember, sex is supposed to be about intimacy and pleasure, not about pressure and proving yourself.

♦ ♦ ♦ ♦ ♦

Dr. Mindy R. Schiffman is a clinical psycholo­gist at the New York University Langone Fertility Center, a clinical instructor in NYU’s obstetrics and gynecology department, and a certified sex therapist and supervisor. She also has a private practice in individual and couples counseling. Dr. Schiffman specializes in helping people cope with the emotional stress of illness, including reproductive loss, sexual dysfunction, grief and bereavement, and interpersonal conflict.

If you find that your sex life isn’t improving, even after attempts to restore intimacy with your part­ner, talk to your doctor. He or she can answer your questions, refer you to a specialist, and help you find solutions.

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

Inspiration and Progress:
Our National Commitment to Defeat Cancer

A National Cancer Institute Annual Report

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

Knowledge image

Dr. Douglas Lowy
(Photo by Ernie Branson)

Every year, for the past two decades, the National Cancer Institute has had the honor of writing an article for Coping’s July/August issue. While searching for a fitting theme for this year’s contribution, I was struck by the challenge we sometimes face – both as individuals touched by cancer and as a nation – in articulating the inspiration needed to confront cancer.

As a cancer researcher, I am person­ally inspired by the fact that each day will bring new insights to our quest to better prevent, detect, and treat many forms of cancer in adults and children. It is a quest that has produced unmis­takable progress, yet with much more still to do.

Thanks to the great strides we have made over the years, people are living longer today after a cancer diagnosis due to earlier detection and improved treatments. The number of people sur­viving cancer has more than doubled in the last quarter century in the United States. In 1992, there were 7 million survivors; in 2016, that number rose to 15.5 million; and by 2026, it is expected to increase to more than 20 million.

Working closely with leading cancer investigators in the U.S. and around the world is another source of inspiration for me. Years of investment in biomedical research have transformed both our understanding of and approach to re­searching and treating cancer. I hear unprecedented optimism that we are on the verge of pivotal advances in on­cology. And just as important as what happens in research institutions like the NCI, there is also an extraordinary resurgence of commitment and determi­nation across government, academia, industry, and the patient community.

During the president’s final State of the Union address in January of this year, I was most gratified to hear President Barack Obama announce the launch of the Cancer Moonshot. The initiative, led by Vice President Joe Biden, aims to double the rate of progress in cancer research and bring therapies to more pa­tients, striving to fast-track what might otherwise be achieved in ten years in just five. This opportunity to make tre­mendous breakthroughs in the field is enormously inspiring.

The number of people surviving cancer has more than doubled in the last quarter century in the United States.

Vice President Joe Biden addresses a meeting of the Cancer Moonshot’s Blue Ribbon Panel on June 13, 2016.
(Photo by The White House / David Lienemann)

To ensure that the Cancer Moonshot Initiative’s goals and approaches are grounded in the best science, the White House established a Blue Ribbon Panel, a working group of the National Cancer Advisory Board. The Blue Ribbon Panel, whose 28 members include leading ex­perts representing a range of scientific disciplines, government agencies, cancer centers, universities, and leaders from industry and the patient advocacy com­munity, is responsible for recommending and guiding the scientific direction and cancer research efforts to be funded by the initiative over the coming years.

The panel created seven working groups, each comprising more than a dozen subject matter experts and patient advocates, to focus on providing the Vice President with their best thinking to guide the Cancer Moonshot. The working groups began their meetings in May, continuing weekly through mid-summer, and deliberated research opportunities in seven priority areas. The goal of each working group was to identify two to three of the most prom­ising opportunities in cancer research that, with additional funding and focus, were poised to produce significant break­throughs within a short period of time.

Both the White House and NCI cast the widest net possible and invited researchers and the general public to submit their best ideas for preventing and treating cancer for the Blue Ribbon Panel to consider. Approxi­mately 850 ideas were submitted via NCI’s CancerResearchIdeas.cancer.gov website. Members of the Blue Ribbon Panel also held sessions at the annual meetings of the American Association for Cancer Research and the American Society of Clinical Oncology, as well as participated in online chats to en­courage people to submit research ideas for consideration.

The effort and commitment of the members of the Blue Ribbon Panel and the working groups have been truly astounding. Leaders across the cancer community placed their already full schedules on hold to focus on this im­portant work. The culmination of this effort will be a report to the National Cancer Advisory Board later this summer presenting five to ten action­able ideas that are recommended for funding under the initiative.

More and more, research and treatment approaches are informed
by input from the patient community, ensuring that patients
and families are treated as partners.

As the Blue Ribbon Panel delib­erations are winding down, other efforts and activities of the initiative are being launched. On June 29, the Vice President hosted an unprecedented Cancer Moonshot Summit, a daylong conference in Washington, D.C. Attend­ees included scientists, oncologists, and patients who came together to help gal­vanize the push to double the pace of cancer research. What made it both a national and local event were the many regional summits that also took place in communities across the nation.

In addition to the priority programs being recommended by the Blue Ribbon Panel, the Cancer Moonshot is expanding or adapting several existing government initiatives to make conducting and par­ticipating in cancer research easier for both researchers and patients:

♦ Increased Access to and Awareness of Cancer Clinical Trials
Clinical trials are a critical part of the research process for the development of new treatments for cancer. But only about five percent of adult cancer patients in the U.S. cur­rently participate in cancer clinical trials. Under the Cancer Moonshot, NCI is working to make searching for a clini­cal trial on the NCI website, cancer.gov, easier for patients, physicians, and oth­ers. We are also working to encourage more patients from racially/ethnically and socioeconomically diverse popula­tions to consider participating in a cancer clinical trial. These communities experi­ence a disproportionate burden of cancer and historically have not been well-represented in clinical trials. Achieving health equity in cancer detection, treat­ment, and survivorship requires clinical trials with populations that are repre­sentative of the nation’s diversity.

♦ Expanded Precision Medicine Research
The idea behind precision medicine is to treat patients according to their individual genes, lifestyles, and environments within which they live. By expanding the Precision Medi­cine Initiative announced by President Obama last year, we have the opportu­nity to accelerate research and provide clinicians with new tools to select tar­geted and tailored cancer prevention methods and therapies that will work best with the least toxicity in individ­ual patients.

♦ Greater Research Access to Investigational Drugs
Accessing drugs from different pharmaceutical companies to test combinations of therapies in clinical trials can be time-consuming, expensive, and difficult. But prescribing two or more drugs instead of just one can often help patients avoid developing resistance to a single drug and make therapies as effective as possible. To speed the development and delivery of effective combinations of treatments to cancer patients, NCI is de­veloping a virtual cancer drug formulary, or library, which would give researchers access to a large number of drugs con­tributed by pharmaceutical companies to test in combination with others.

♦ Greater Access to Genomic Data
Last month, NCI launched its Genomic Data Commons, a first-of-its-kind, open-access, cancer data-sharing repository that allows researchers to contribute data from decades of research studies conducted around the world into one repository to facilitate access, sharing, and reanalysis of the raw data. Among the data the GDC will store, with safe­guards for patients’ privacy, are the treatments that patients received and patient response, enabling investigators to gain a deeper understanding of cancer and develop more effective treatments.

The Cancer Moonshot has asked a great deal of the cancer community in stepping forward to accomplish a monumental amount of work in such a short period of time. The community, including the survivor and advocacy communities, has generously and enthusiastically responded with the understanding that what they are con­tributing now will make a difference for the future. I am grateful for their service, humbled by their contributions, and confident that the results will ben­efit everyone who cares about cancer.

More and more, research and treat­ment approaches are informed by input from the patient community, ensuring that patients and families are treated as partners. They bring a vital point of view to the process, providing a better understanding of the unique physical, psychological, social, and economic needs of the growing population of cancer survivors, and enhancing our ability to address those needs.

Working in partnership with survi­vors and patient advocates helps to keep our healthcare system in check, ensuring none of us loses sight of the fact that healthcare is not just about medicine, treatment, and statistics. Above all, it’s about the enrichment of people’s lives by improving out­comes and providing inspiration and hope.

♦ ♦ ♦ ♦ ♦

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

This article was published in Coping® with Cancer magazine, July/August 2016.

My Cancer Transformation

by Jaime Andrews

Inspiration image

I was 33 years old when I learned I had breast cancer. Not only did I have cancer – I had aggressive, advanced cancer. This unrelenting dis­ease is diagnosed in the later stages and is referred to as metastatic, a word with Greek origins meaning change. It’s when the tumor spreads to other parts of the body. For me, it spread to my skull, spine, pelvis, and abdomen. It even fractured my ribs.

Another definition of metastasize is “to transform.” That’s how I choose to define my diagnosis – as a transformation.

One year after my mother’s own death from cancer, the disease crept in to my body while I was busy chasing after my two young children. Upon diagnosis, I learned that my type is known as HER2-positive metastatic breast cancer. It is estimated that about 20 percent of breast cancers are HER2-positive, and this type of breast cancer tends to be more aggres­sive and to spread more quickly than other cancers.

There’s no cure for my cancer; I’ll likely remain on my treatment, Kadcyla, for the rest of my life. It would be easy to let stress, anxiety, and negativity bring me down. Instead, I view cancer as my opportunity for transformation. I choose to remain optimistic and hopeful, because my life is more full of love and joy than it has ever been.

It would be easy to let stress, anxiety, and negativity bring me down. Instead, I view cancer as my opportunity for transformation.

During the past five years, cancer has ultimately given me a greater ap­preciation for the big and the small moments I have with my husband, my 10-year-old son, and my 7-year-old daughter. As a family, we celebrate a “livin’ life list” to help us focus on shared experiences. Over time, we’ve created many lasting memories, including swimming with dolphins and visiting Disney World.

When we’re not having fun as a family, I’m busy launching a new business endeavor as an independent fashion consultant. The work is flex­ible, yet fun, and it pushes me out of my comfort zone. Working allows me to contribute to my family as well as realize my career goals. It also helps take the focus off of cancer.

Most people in their 30s are career-driven, focused on advancing their positions in the workplace, trading one job for a more rewarding one. But life with cancer changes everything. I have found little support and training for people like me who want to continue working. As a person with advanced cancer, I strongly believe that investing in doing work you love can help trans­form your overall quality of life. That’s why I decided to start my own business.

Like the other 155,000 Americans living with metastatic breast cancer, I’m hopeful for more awareness, sup­port, and resources for people thriving in spite of this disease. My advice to other cancer survivors is to follow what sparks joy and makes you feel alive – it’s the very thing that helps me to thrive!

♦ ♦ ♦ ♦ ♦

Jaime Andrews is a young adult metastatic breast cancer survivor and thriver living in Marietta, GA.

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

Post-Traumatic Growth

A New Perspective on Life after Cancer

by Pamela J. Ginsberg, PhD

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Being diagnosed with cancer is one of the most devastating and frightening experiences a person may ever face. Cancer can completely disrupt your life, sending you into a tailspin of fear, uncertainty, and loss of control. It will bring on a myriad of psychological and logistical challenges. And they all must be confronted at a time when you feel vulnerable and destabilized.

However, though difficult, it is pos­sible to work through these challenges and to not only restabilize your life but also grow from the experience. Psychol­ogists call this concept post-traumatic growth. And it refers to the process by which a person grows stronger and more contented as they overcome difficult and traumatic experiences.

Growing through the Cancer Experience
For cancer survivors, post-traumatic growth happens when you take on the cancer experience with a sense of strength, when you allow yourself to be open to the new perspec­tives and new understanding that can come from going through such a diffi­cult time. Many people find themselves reevaluating their priorities after cancer and devel­oping a clearer understanding of what is truly important. I often hear from cancer survivors that life after cancer is much more precious, and that they appreciate their loved ones more.

Some people find that the experi­ence helps them to understand who their real friends are, and gives them strength to let go of relationships that do not serve them well. Many people see this as especially freeing, and they are grateful that the cancer experience helped them find this new perspective.

You must learn to live with uncertainty in a way that was never really relevant before your diagnosis.

Author of Article photo

Dr. Pamela Ginsberg

Facing Down Fear
Though cancer can be an experience fraught with fear, it is important to recognize how your relationship to fear is affecting you. Fear is a normal human response, and having fear doesn’t mean you are doing something wrong. However, allowing fear to be the driving force behind your decision-making can lead to regrets. Remember, you are in the driver’s seat of your decisions; fear is only the pas­senger. You will inevitably feel some fear, but you can’t let it control you. When faced with a tough decision, get the facts, talk it through with trusted others, and take your time be­fore deciding.

Coping with Uncertainty
After a cancer diagnosis, and even after your treatment is completed, you will likely discover that there is more uncertainty still to come. Your physicians can give you the statistics if you want them, but many people find little comfort in those numbers.

To thrive after cancer, you must learn to live with uncertainty in a way that was never really relevant before your diagnosis. Cancer is a life-changer, but learning to embrace your new nor­mal with all of its unknowns can infuse your life with vitality. There is, and always has been, uncertainty in your life, but cancer makes you more aware of it than ever before. Choose to em­brace and accept this crazy adventure, with all of its twists and turns. Don’t waste your life searching for certainty; that is a fruitless search driven purely by fear.

Embracing Optimism
Try to be both realistic and optimistic as you care for yourself after cancer. Follow your physician’s instructions for self-monitoring, lifestyle modifications, healthy habits, and follow-up exams. But be optimistic about your future, your happiness, and your life’s satis­faction. Cancer will always be part of your story, but it’s certainly not the whole story.

You are in charge of writing the cancer chapter of your life’s story. You can decide how you move through this experience, what it means to you, and how it will change you. Let this experi­ence strengthen you, your relationships, your priorities, and your values. Learn to accept help. And, above all, have faith in yourself that you can live a full, meaningful, and beautiful life – even after cancer.

♦ ♦ ♦ ♦ ♦

Dr. Pamela Ginsberg is a licensed psychol­ogist in Doylestown, PA. She specializes in women’s health, pscyho-oncology, and women’s issues. She serves on the board of directors for the Cancer Support Com­munity of Greater Philadelphia and is a speaker and consultant for several cancer-related organizations. To learn more or to contact Dr. Ginsberg, visit pginsbergphd.com.

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

Stop Keeping Up (and Down) with the Joneses

Don’t Get Caught in a Thought Trap When Making Decisions about Prostate Cancer

by Andrew J. Roth, MD

Author of Article photo

Dr. Andrew Roth

It’s easy to compare yourself to men who look healthier than you and wonder if you will have their good luck. You may make negative self-comparisons with others who look stronger and healthier and wonder, How come my luck was not as good? It is even more unsettling to see someone who looks more ill than you and wonder if that is the road you will be heading down, and when.

Comparing your own situation to another’s is risky because there is a very large margin for error. Men with prostate cancer may have different cell types and different stages of disease at any point in time, as well as at the time of diagnosis, and they may have had different treatments or different regi­mens of the same treatment.

Medical care always needs to be individualized. This is why Internet hunting can be so frustrating. Men tolerate the same treatments differently and have diverse complications. Every man comes to his prostate cancer expe­rience with a different genetic and physiological makeup, having had unique life experiences and losses, as well as having developed his own coping patterns for dealing with those experiences. Each has distinctive sup­port systems and health problems. Men have unique needs for the amount and type of information that will help them make the best treatment and life deci­sions for them.

Comparing your own situation to another’s is risky
because there is a very large margin for error.

If you start to freak out because you think you made, or will make, the wrong treatment choice, remember some of the thought traps you might be stepping into. Uncertainty can pull you in the wrong direction. When you start feel­ing this way, try using the DRAFT technique:

Detect the anxiety or fear.
Recognize where the anxiety is coming from.
Acknowledge the rational and irrational aspects of your thoughts: I am worried that I did not (or will not) make the correct treatment choice; I am worried because I want to live a long and healthy life and now I am scared that hope is compro­mised; I am worried because my friend’s erections did not get better after surgery and that might happen to me.
Flip to the more rational, glass-half-full aspects of your life and health circum­stances, often beginning with the word however: However, I sought expert opinions and asked around and I read a lot of material. I am feeling pretty healthy otherwise. I’ve made excellent decisions in the past. I have to believe that my treatment was/will be the best choice for me when I made/make it.
Transform the somber, anxious feelings or thoughts through distraction into some­thing more life-enhancing right now: Let me pull out my crossword puzzle while I’m waiting, or Let me take a walk with my partner or call my daughter.

Information from others and the Internet can sometimes be useful. Other people can help you understand general parameters or responses, as well as help you see that you can get through the treatment, overcome complications, and be able, after the tincture of time for physical and emo­tional recuperation, to speak about it in an encouraging way. However, it is important not to take any information too literally and to try not to generalize from any one situation to your own.

Just as statistics can be confusing and inadvertently deceptive for a man who wants to know where he will stand in the future as a unique entity, it is problematic to generalize from the experience of one or a few men and believe that is how you will wind up. Have you ever purchased an item you were disappointed with that a friend raved about? Or have you listened to a highly recommended “could-not-miss” song, or read a “great” novel, or seen a “fantastic” movie and felt let down?

It doesn’t mean you shouldn’t listen to others’ experiences and recommenda­tions about their choices and perhaps try some out; however, the listening about health issues must be done with a dis­cerning ear – this is information that you will assess in the context of your body and lifestyle, but will not be a blanket guarantee of a particular outcome. It is important to keep these concerns in mind to avoid the all-too-common thought trap of overgeneralizing.

♦ ♦ ♦ ♦ ♦

Dr. Andrew Roth is the psychiatry liaison to the Genitourinary Medical Oncology Program at Memorial Sloan Kettering Cancer Center in New York, NY, where he has helped men and their families navigate the uncertainties of a prostate cancer diagnosis for the last 20 years.

Excerpted from Managing Prostate Cancer: A Guide for Living Better. Oxford University Press, 2015. Copyright © 2015. Reprinted with permission.

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

What to Do If You’ve Been Diagnosed
with an MPN

 

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Myeloproliferative neoplasms (MPNs) are a closely related group of progressive blood cancers in which the bone marrow typi­cally overproduces one of the mature blood elements. Other shared features include tendencies toward blood clot­ting or bleeding, organ enlargement, bone marrow scarring (fibrosis), and a possibility of transformation. Although MPNs can strike anyone at any age, most people are affected in the sixth decade of life or later.

Stem cell transplants may offer a cure for some people with myelofibro­sis. But there are no known cures for most MPNs. However, people with MPNs can experience few or no symp­toms for extended periods of time, and many people who have MPNs can enjoy longevity with proper monitoring and treatment. The identification of the JAK2 gene marker in 2005 and the CALR gene marker in 2013 have led to significant advances in the diagnosis, understanding of disease processes, and treatment of MPNs.

Types of MPNs
There are three blood cancer types that are categorized as “classic” MPNs:
♦ Primary Myelofibrosis (MF) – Most commonly seen in men and women over the age of 60, MF is a chronic blood cancer in which the bone marrow func­tion is impacted by scarring. People with MF often have associated symptoms and an enlarged spleen. MF can occur in people with no prior history of an MPN (primary MF) or as a progression of polycythemia vera or essential thrombocythemia.
♦ Essential Thrombocythemia (ET) – ET is a blood malignancy that is typically characterized by an elevation of plate­lets in the blood. It is most prevalent in women over the age of 50, and common symptoms include blood clotting and bleeding. People with ET have a later risk of progression to MF.
♦ Polycythemia Vera (PV) – Character­ized by an elevation of red blood cells, PV is most commonly diagnosed in men over the age of 60. People with PV often exhibit elevated white blood cell and platelet counts, as well as an enlarged spleen.

MPNs are rare diseases. Whether you have polycythemia vera, essential thrombocythemia, or myelofibrosis, chances are you will experience a steep learning curve.

Tips for the Newly Diagnosed
An MPN diagnosis can be a confusing and emotional experience. Here are 7 prac­tical tips that may be useful for people newly diagnosed with an MPN, as well as others who are struggling to cope with an MPN.

1 Become informed about your disease.
MPNs are rare diseases. Whether you have polycythemia vera, essential thrombocythemia, or myelofibrosis, chances are you will experience a steep learning curve. Rather than feel­ing overwhelmed, take it day by day and be sure to ask your doctor for help.

2 Keep track of important informa­tion in a paper or electronic file.
It’s not unusual for people diagnosed with an MPN to be treated by multiple doctors. To stay on top of your treatment routine, it’s critical to record notes from doctor appointments, questions for and answers from your physician, dates of appointments, test results, blood cell counts, medications and dosing sched­ules, prescription refills, and other information.

3 Find a mentor.
Peer-to-peer match­ing programs can be valuable for identifying a seasoned mentor who can help you walk through the initial stages of an MPN diagnosis. As you become more knowledgeable about the chal­lenges people diagnosed with an MPN face, you may eventually consider becoming a mentor for others.

4 Get a second opinion if you need one.
Make sure you consult with a physician who has experience treat­ing MPNs. Don’t be afraid to seek a second opinion. There are resources available to help you find a doctor or treatment facility that understands the unique needs of MPN survivors.

5 Find a support group.
Many MPN survivors and their families find that it’s helpful to talk about their dis­ease with other survivors. Find an online or in-person support group to talk about MPNs with people who understand your concerns and emotions.

6 Find out about clinical trials.
On­going research is being conducted to find new treatments for MPNs. When new treatments are discovered, they must be tested to determine proper dosage, side effects, and effectiveness. By learn­ing about clinical trials, you can uncover opportunities that advance MPN treat­ments and possibly benefit your personal prognosis. Consult your physician to discover if clinical trials are an advisable course of action for you.

7 Research your options.
Information is an important part of changing your MPN prognosis. The more you know, the more empowered you become in your fight against the disease.

♦ ♦ ♦ ♦ ♦

If you’ve been diagnosed with an MPN, it’s im­portant to know that you’re not alone. The MPN Research Foundation provides comprehensive support for people with MPNs and their families. To learn more, visit MPNResearchFoundation.org.

Reprinted with permission from the MPN Research Foundation, mpnresearchfoundation.org

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

RX for a Good Night’s Sleep

Don’t sweep insomnia under the bed.
Effective treatments are available.

by Clare M. Sullivan BSN, MPH, OCN

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Having trouble sleeping can be frustrating and isolating. It is also a common problem experi­enced by cancer survivors.

If you have difficulty falling asleep or staying asleep more than three times a week, for a month or longer, you may have insomnia. People with cancer are more likely to experience insomnia due to risk factors such as these:
⋄ Stress or anxiety surrounding the cancer experience
⋄ Cancer-related pain, headaches, nausea, or vomiting
⋄ Side effects from cancer medications, chemotherapy, or radiation
⋄ Changes in routine, such as an over­night stay at the hospital or frequent visits to an outpatient clinic

Often, cancer survivors don’t discuss insomnia with their healthcare team. The likely reason is that, on the surface, in­somnia may not seem cancer related. However, if insomnia is ignored, other cancer-related side effects such as pain, anxiety, and fatigue can intensify.

Don’t sweep insomnia under the bed. Effective treatments are available. For starters, a board-certified sleep medicine physician or a behavioral sleep special­ist can help by using a new advancement called cognitive behavior therapy for insomnia, or CBT-I. The treatment involves utilizing stress reduction and relaxation techniques that are effective in treating people with insomnia. Often, treatment combines CBT-I with sleep hygiene rituals and practices done at bedtime that help promote better sleep.

If you have difficulty falling asleep or staying asleep more than three times a week, for a month or longer, you may have insomnia.

Author of Article photo

Clare Sullivan

Some people find that simply chang­ing sleep behaviors and implementing bedtime rituals is enough to improve their sleep. Don’t wait until your next appointment; here are some things you can do to develop your own healthy sleep routine – starting tonight.

Improve your sleep behaviors.
Remove electronic devices from the bedroom, and avoid watching TV or working in the bedroom. Move any clocks out of view of your bed. Make sure your bedroom is free of as much light and noise as safely possible. Con­sider using earplugs or wearing a sleep mask. Avoid eating heavy, spicy, or sugary foods close to bedtime. Avoid smoking, and limit your caffeine intake. Avoid drinking alcohol, especially four to eight hours before bedtime.

Improve your sleep routine.
Go to bed and get up at the same time each day, seven days a week. Avoid long naps in the late afternoon. Exercise regularly, but not within three hours of your bed­time. Use your bed for sleep and sexual activity only. If you can’t fall asleep, get out of bed, leave the bedroom, and return when you are sleepy.

Consider relaxation strategies.
Talk about fears and worries early in the day, not at bedtime. Practice some gentle yoga, or take a warm bath be­fore bed. Some studies suggest that regular exposure to late afternoon sun may release melatonin and help regulate your circadian rhythm. Just remember to wear sunscreen. Effective types of integrative therapies to try at bedtime include muscle relaxation, biofeedback, imagery, hypnosis, and thought stopping. Ask your cancer team about specialists who can help you learn more about these techniques.

Ask about medications.
Talk with your cancer care team about medications for treating your insomnia. Use caution because many sleep medications can be habit forming and should only be used for a short time. Some medications, if mixed with natural remedies, can have serious interactions. Before considering any over-the-counter products, dietary supplements, or herbs, talk with your cancer care team, as these can potentially interfere with your cancer treatments.

A good night’s sleep is critical for your cancer recov­ery. Don’t overlook the improvements in physical health and mental well-being that can come from getting consistent, quality sleep. Talk with your cancer care team about any sleep difficulties you are ex­periencing. They are there to help you.

♦ ♦ ♦ ♦ ♦

Clare Sullivan is a clinical manager of patient education at Dana-Farber Cancer Institute in Boston, MA.

To learn more about healthy sleep and sleep disorders, or to find an American Academy of Sleep Medicine–accredited sleep center in your area, visit SleepEducation.org.

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

Take a Hike

The unexpected advice that helped me learn
how to live after cancer

by Patti McCarthy

Inspiration image

In September 2012, I was on top of life. My husband and I cel­ebrated 25 years of marriage. Our three kids were in college, all doing well. I was awarded a top honor at my job. I couldn’t have been happier, more successful, or healthier.

Then on October 4, I got the call: “Patti, you have invasive breast cancer.”

I made my doctor spell out invasive, as if it was a foreign medical term I had never heard of. I was devastated. I got by on a wine and tears diet for weeks. I felt betrayed by good health and doing all the right things.

After the lumpectomy, my oncologist told me they found an additional tumor and some precancerous cells. My can­cer was aggressive. I would need active treatments for a year. I felt powerless.

I am normally a positive, happy person. Happy is my family nickname! Everyone tried to help with the right words, but, honestly, I wanted to slug the next person who told me to be positive or offered up the “miracle cure” for cancer. I was positive I was going to beat cancer, but at the same time, I was also angry and anxious.

Honestly, I wanted to slug the next person who told me to be positive or offered up the “miracle cure” for cancer.

Inspiration image

Patti McCarthy

I did get one great bit of advice, though. That advice was to find a pur­pose, a passion to focus on. A passion that would let me live life, and not be swallowed up by cancer. For me that passion had always been hiking.

For years I wanted to hike the Pacific Crest Trail, a 2,650-mile trail from Mexico to Canada. My husband and I started small sections at a time, five months before I was diagnosed. Beginning with day hikes, we built our confidence to do overnights, eventually celebrating our aforementioned anni­versary with a five-day hike. With this hike, we had accomplished 122 moun­tain miles of backpacking.

When I found out I had cancer, I thought my hiking days were over. However, after some time had passed and I had begun to come to grips with my diagnosis, I resolved to hike as much as I could.

My husband and I went on to hike an additional 244 miles. Those miles were hiked in between surgery, chemo­therapy, radiation treatments, and Herceptin infusions. They were hiked while dealing with hair loss, relentless anxiety, low immunity and B12 levels, multiple infections (including shingles), and other stuff that would be TMI. At times, dizzy and exhausted, I’d think, Why am I here? Why do I insist on doing this?

What kept me going? My refusal to let this stupid disease defeat me.

After my last treatment, my husband and I took a celebration hike. The sun was shining. My iPod was blasting Zeppelin. I was in the moment. I couldn’t help but to sing – and sing loudly. I felt happy. I realized it had been too long since I’d felt that. It became apparent how healing this trail has been for me. It was a solace, a means of getting away and refocus­ing on what was important. It gave me strength. It helped me live my life, not cancer. For that I am forever grateful.

♦ ♦ ♦ ♦ ♦

Patti McCarthy is a breast cancer survivor living in Encinitas, CA. She has written a book about her experience, Hiking Cancer: 400 Days of Cancer and How I Hiked Through It.

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

When Words Heal

Writing Your Cancer Story

by Sharon A. Bray, EdD

Wellness image

Fifteen years ago, numb from treat­ment for early-stage breast cancer, I signed up for a weeklong writing workshop at the urging of a friend. While I looked forward to it, I had mixed emo­tions, and on the first day, I entered the classroom full of doubt and anxiety.

The first writing exercise was brief and unexpected. “Tell me something I can’t forget,” the workshop leader said. I stared at my notebook, mind blank as the page, settling on a childhood mem­ory just to get something written. When the leader invited us to read aloud, however, I passed.

Gradually, I wrote more easily, but the word cancer never appeared in my notebook until the final class. Among the prompts offered on that last day, a single sentence chosen at random opened the door to my real story. I felt my skin prickle as I read the words from the slip of paper: “The hospital corridor was dimly lit …”

I began writing; words flowed from my pen. I couldn’t write fast enough as I remembered how I felt waiting in a small room for my first radiation treat­ment. That was over fifteen years ago, and it was the beginning of a new life chapter for me.

Now as I lead my own “Writing Through Cancer” workshop series, I often hear participants apologize for their writing attempts, saying, “I’m not really a writer.” But everyone can write. What I think is really being expressed by these participants is fear (much like I felt years ago during that first workshop), fear they have nothing to write about. Yet, as they soon discover, they do.

Writing helps us express our pain and suffering, helps us “unburden” ourselves of it.

Author of Article photo

Dr. Sharon Bray

In his book The Emperor of All Maladies: A Biography of Cancer, Siddhartha Mukherjee describes cancer patients as storytellers, narrators “of suffering” – travelers who have “visited the kingdom of the ill.” Writing helps us express our pain and suffering, helps us “unburden” ourselves of it. Expressing through writing these events we’ve ex­perienced, and the feelings surrounding them, helps us heal.

At the first meeting of each of my writing workshops, I ask everyone to write about when they first heard the words “You have cancer.” Within seconds, pens and fingers move rapidly, words filling the page or laptop screen. As the participants read aloud what they’ve written, it’s often with trembling voices. Tears may be shed, but every­one is nodding in understanding.

Why write? It helps us to make sense of the chaos of emotions brought on by cancer and repair the damage cancer inflicts on our lives, our sense of self, our disrupted futures. We write to re­member who we were, but we also write to discover who we are becoming. Re­search confirms that the most healing kind of writing takes the shape of a story. Stories are how we communicate. They are the language of community. Through shared story, isolation and loneliness are diminished. We discover we are not alone. Writing helps us gain perspective, helps us rediscover life and remember what truly matters.

I launched my first “Writing Through Cancer” series one year after I finished cancer treatment. I’ve never ceased to be inspired and humbled by the men and women who attend my workshops to write and share their stories of the cancer experience. Though joined by cancer, each person’s story is unique.

“I am the only one who can tell my story and say what it means,” Dorothy Allison writes in her memoir Two or Three Things I Know for Sure. Her words are wise and true. No one can tell your story or create meaning in it but you.

Do you want to write? Then ask yourself, “What is the story I want to tell? ” Your story matters. If you don’t tell it, who will?

♦ ♦ ♦ ♦ ♦

Dr. Sharon Bray is the author of two books on the health benefits of writing through cancer. She leads expressive writing groups for cancer survivors and teaches creative nonfiction for the UCLA Extension Writers’ Program.

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

The Language of Commitment

What Being There Really Means

by Val Walker, MS

Wellness image

In times of illness, we of­ten need to depend on the help of others, and rely on them to follow through. But when someone backs out at the last minute or breaks a promise, even for understand­able reasons, we are left worried, stranded, or vulnerable.

Most family members and friends genuinely care and want to help, but they some­times fall into the trap of overpromising, or making vague, unclear commitments. Indeed, any of us, in a hurry or in the throes of offering our best, heartfelt inten­tions, can make generous, but unrealistic promises. Our plans can backfire when we find our­selves overextended, as we scramble to recover from curve­balls coming our way and messy, awkward complications.

Most of us already know the basics of making solid commit­ments – but we all know, as human beings, life doesn’t work so neatly. I can honestly attest to my own habit of overpromising under the influence of powerful feelings like love, guilt, duty, or hope. I’m still learning to keep my word by using the right words in the first place when I make a promise – being mindful of what I say, and thinking before I open my mouth.

For over 20 years, as a rehabilitation counselor facilitating support groups for caregivers, as well as for people living with cancer, I’ve heard the good, the bad, and the infuriating about counting on other people. From their accounts, I’m convinced that even the smallest act of keeping a single promise is deeply reassuring during un- predictable and painful times. Reliable people are comforting because they don’t overprom­ise, but instead offer what they can realistically, truly deliver.

Reliable people are comforting because they don’t overpromise, but instead offer what they can realistically, truly deliver.

Author of Article photo

Val Walker

Thanks to the practical wis­dom of hundreds of support group participants who have spoken out about keeping com­mitments, I’m offering a short list of their suggestions for mak­ing a solid, keepable promise.

The Four Elements of a Solid Commitment

1 Keep it specific and tangible.
A promise or commitment should never be vague. It’s too difficult to follow through when something’s unclear.

Specific:
bullet Could I call you Monday night to check in?
bullet I could text you this evening to see what the lab results are.

Too Vague:
bullet Call me if you need me.
bullet Let me know how the labs turn out.

2 Keep it simple, in small steps, and time-limited.
Offer help that is easy to remember and that is doable in a few steps, without getting too far ahead of yourself in the planning. When people are feeling very tired and weak with an illness, it might be too overwhelming to think much further ahead than a few days, or even one day. Regular check-ins and small steps along the way make it more manageable for all involved.

Simple, Clear:
bullet I can come by around 6:00 p.m. for the next three days.
bullet I could stop by the pharmacy every Friday this month.

Not So Simple, Less Clear:
bullet I’ll be there – all through your chemo. I promise.
bullet As long as you need, I can always pick up your refills.

3 Keep it sincere, which means being realistic and honest with yourself.
This means you may sometimes need to say no. You don’t want to overcommit and risk letting your friend down, or stretching yourself too thin.

Sincere and Realistic:
bullet I’d like to wait and talk after dinner when I can really listen.
bullet I can certainly do your laundry on Sundays, but weekdays are not good for me.

Overdoing It or Multitasking:
bullet We can chat while I make dinner.
bullet I can do all your cleaning and laundry.

4 Keep it proactive – a thought-out decision, not a knee-jerk reaction.
Avoid making a commitment in haste without thinking about it first. You can always get back with the person a little later with a well-informed decision. But you do need to make sure you follow up soon and don’t leave the person hanging.

Proactive, Thinking First:
bullet I know I can help in some way, but first I’d like to think over the best way.
bullet I’m sure I can help. I’ll call you in the morning with some ideas after I give this some thought.

Reactive:
bullet No problem; I’ll make it happen.
bullet I’ll do whatever you need.

♦ ♦ ♦ ♦ ♦

Val Walker, a rehabilitation counselor and grief consultant, is the author of The Art of Comforting: What to Say and Do for People in Distress. You can keep up with Val at ComfortingInAction.com.

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

Ways to Help Your Child Cope with Cancer in the Family

by Jennifer Gretzema, LLPC, NCC, SCL, CCLS

Wellness image

The diagnosis of cancer is often unexpected and daunting. How­ever, many survivors and their families come to find a source of strength in the community they come to know, a sense of support in the guidance they receive, and a feeling of empowerment in the strides and discoveries made every day. These connections can be helpful not only to adults but to children as well. It is up to you to foster these connections with your child when someone in the family is diagnosed with cancer.

Developmentally, children have an egocentric view of the world. When someone in their life is diagnosed with cancer, they may feel they did some­thing to cause it. They may also be dealing with silent worries about being able to catch a family member’s cancer. Adults in the child’s life can help assuage these fears by communicating with the child in an age-appropriate way.

After a cancer diagnosis in the fam­ily, a child’s questions and anxieties may feel all-consuming. A helpful metaphor to use when discussing feel­ings may be to equate these feelings with lava building up inside a volcano waiting to erupt. Teach them how deep breathing, sharing their feelings, and using art, music, and play to express themselves can help them calm the volcano inside.

Most children digest information best through hands-on, developmentally appropriate play.

Author of Article photo

Jennifer Gretzema

Explaining Cancer Using Play
Most children digest information best through hands-on, developmentally appropriate play. For example, using a doll or stuffed animal, a child can role-play care of a central line (or some other aspect of treatment the adult is experiencing). You can ask medical staff for an infant-sized anesthesia mask, tubing for a central line, cleaning swabs, and dressings to aid in the role-play. What makes a child most anxious is that which is foreign and unknown. Sitting beside your child while they role-play and talking to them about cancer treatment will bring knowledge and comfort to you both.

As treatment progresses, people with cancer often begin to lose their hair. To prepare your child for this, you can talk about how cells are like build­ing blocks in our bodies. Sometimes, these cells get sick. The chemotherapy medicine helps get rid of the sick cancer cells, but sometimes it gets confused and tells the healthy cells (such as the ones that build our hair) to go away too. Just make sure to draw the distinction be­tween chemotherapy medicine and the medicine that a child takes for a cold, for example. Reassure your child that this won’t happen to them when they have to take medicine. You can also use the central line doll to role-play the hair loss – and regrowth – process. In fact, the doll can continue to be a supportive, educational tool for the child through­out the entire cancer process.

Establishing Routine in the Chaos of Cancer
Children thrive on predict­ability and consistency. Cancer may challenge their routine. Including chil­dren in making decisions about changes in routine that occur due to cancer will give them a sense of empowerment. For example, you can let them choose which relative to stay with if both parents are at the hospital. You may even want to record yourself reading a bedtime story for your child to play while you are in the hospital. This can provide a comforting ritual to your child, as well as serve as a point of connection between the two of you. You can also create a calendar so your child knows in advance when changes in the routine are going to occur. If possible, seek help from family mem­bers or friends to allow your child to continue their regular schedule and activities as much as possible. Establish a relationship with a school counselor or trusted teacher to help ensure your child is adjusting well at school.

A cancer diagnosis in the family can be overwhelming, especially for chil­dren. Partner with your community and support networks to provide a sense of comfort and connection for your child. Join your child in play, as this will allow them to process their thoughts about cancer and give you an opportunity to share your own. Recognize that resil­ience is made up of strong moments of triumph, as well as quieter moments of communion. Each of these holds power and significance.

♦ ♦ ♦ ♦ ♦

Jennifer Gretzema is a certified child life specialist at the University of Michigan C.S. Mott Children’s Hospital in Ann Arbor, MI. She works with pediatric hematology/oncology patients and their families to provide psychosocial support during treat­ment. She also has a private counseling practice, Connections Counseling of Michigan, in Brighton.

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

Depression

The Unwelcome Guest

by Katherine Easton, LCSW, OSW-C

Wellness image

A warm family and healthy social connections can help lower your risk of depression.

When people think about the side effects of cancer treat­ment, physical effects like fatigue, hair loss, and nausea and vomiting are often what come to mind. However, cancer survivors are at risk of developing another rarely discussed, and far less visible, side-effect – depression. This unwelcome, and often unexpected, guest can even affect people who may normally have healthy coping skills.

In an effort to help combat cancer-related depression, the American College of Surgeons’ Commission on Cancer now requires community cancer centers to screen anyone undergoing cancer treatment for something doctors refer to as distress. Distress is an unpleasant emotional experience that may interfere with a person’s ability to cope effectively with cancer, its physical symptoms, and its treatment. Left unchecked, persistent distress can lead to depression. Most oncologists now actively assess and treat distress and depression as part of comprehensive cancer care.

What is depression?
Everyone feels low sometimes, but these feelings usually pass after a few days. When you have depression, the low feelings persist, and they can be intense. These low feelings hinder your ability to do simple, every­day activities for weeks at a time.

Author of Article photo

Katherine Easton

People who have been diagnosed with cancer may be at higher risk of developing depression for numerous reasons. During cancer treatment, you may experience increased feelings of fear or worry, along with other powerful emotions. In addition, many people have difficulty adjusting to the significant changes cancer brings about in their lives, their work, and their relationships.

Not all people experience depression in the same way. For some, it is experi­enced as a sad or “empty” feeling. Others may feel a sense of hopelessness or helplessness. And still others may ex­perience more physical symptoms, such as fatigue, aches and pains, headaches, loss of appetite or an inability to sleep. For many, depression causes a loss of interest or pleasure in activities they once enjoyed.

What causes depression?
Different factors play a role in the risk of de­pression. The disorder tends to run in families. One of the reasons for this has to do with genes. Some genes in­crease the risk of depression, while others increase resilience (or the ability to recover from hardship) and protect against depression.

Experiences such as trauma or abuse during childhood and stress during adulthood can also raise your risk of depression. However, factors such as a warm family and healthy social connec­tions can increase resilience, which may lower your risk of developing depres­sion. Hormonal therapies used to treat some cancers also put people at higher risk of depression.

Many cancer survivors experience situational depression in response to their illness. Sometimes referred to as an adjustment disorder, situational depression is defined as a short-term condition in which a person has difficulty coping with or adjusting to a particular source of stress, such as a major life change, loss, or stressful event. A cancer diagnosis definitely fits that description. However, it’s important to note that some stressors or losses can trigger de­pression in one person but not another. Thus, while many cancer survivors do experience depression, not all people with cancer are depressed.

What should I do if I think I’m depressed?
Depression is a serious illness that needs treatment, as it may significantly affect your quality of life. A combination of antidepressant medi­cations and psychotherapy is often the best approach to treating depression.

Psychotherapy, or “talk therapy,” may help by teaching you new ways of think­ing and behaving. Your therapist may also work with you to change habits that may be contributing to your de­pression. Moreover, therapy can help you understand and work through dif­ficult relationships or situations that may be causing your depression or making it worse.

Discussing your concerns about your depression is an important conversation to have with your oncologist. Your doctor may decide to prescribe an antidepressant and encourage you to meet with a behavioral health spe­cialist, such as a licensed professional counselor or licensed clinical social worker, with experience treating individuals with cancer. In addition to professional help, you may also find that support groups, wellness classes, a balanced diet, and exercise may also help you manage your depression.

Living with cancer can be difficult, but that doesn’t mean you have to live with depression and sadness. Remember, depression is an unwelcome guest. Don’t let it have a seat at the table. Seek help for your depression, and take back con­trol of your life.

♦ ♦ ♦ ♦ ♦

Katherine Easton is a licensed clinical social worker certified in oncology at Atlanta Cancer Care, affiliated with North­side Hospital Cancer Institute, in Atlanta, GA, where she provides clinical psycho-social support to individuals with cancer and their families.

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

Get Your Camera Ready!

Your National Cancer Survivors Day® photos could be featured in Coping magazine.

 

Celebrity Cancer Survivor

Coping's July/August 2015 cover

Five Tips for taking amazing photos of your Survivors Day celebration

Once again, Coping with Cancer magazine is featuring local NCSD events in the July/August 2016 issue. And your photos could be included – maybe even on the cover.

If you’re hosting an NCSD event this year, send the best digital photos of your event to Coping with Cancer magazine by June 13 to be considered for its official coverage of National Cancer Survivors Day®.

National Cancer Survivors Day® will be filled with special moments everyone will want to remember. And you’ll want to be sure to have a camera (or two, or three) on hand to document it all. Is your camera ready?

You don’t have to be a professional photographer to take amazing photos of your celebration. Just follow these 5 tips for capturing those unforgettable NCSD moments:

1. Take action shots. Pictures of people doing things are more interesting than photos of people just standing around. Instead of photographing your guests passively listening to a keynote speaker, try to capture those special moments of laughter or tears during the speech. You should also take photos of people participating in NCSD activities – like crossing a finish line, dancing, giving high fives, or creating artwork.

2. Look for candid moments. Candid shots of people caught up in the moment – sharing hugs, laughing, wiping away a tear – capture the spirit of the event much better than posed photos in front of the same background over and over again.

3. Photograph people together. When you photograph people together, it introduces a relationship into the shot. After all, National Cancer Survivors Day® is about bringing cancer survivors together to celebrate life.

4. Don’t be obvious. When people are aware of you taking photos of them, they may get nervous and tense up, or turn on the fake smiles and pose. In order to capture those coveted candid moments, you’ll have to be a little less obvious with the camera.

5. Take a LOT of photos. If you have a digital camera, you can click away without having to worry about setting up the perfect shot every time. Your camera’s burst function is perfect for this. Taking lots of photos increases your chances of getting that one perfect shot.

Pick out your best shots to share with Coping and follow these guidelines to prepare your entries:

WHAT TO SEND

  • Format: Close up, candid shots are preferred. Front cover candidates should have a vertical format and space left at the top for the Coping logo. Inside coverage candidates can be vertical or horizontal.
  • Photo Description: Provide a short description of each photo submitted; list people from left to right.
  • Digital Camera: Set your camera for the highest possible resolution (quality). Submit via email; CD; or for large files, via FTP.
  • Film Camera: Coping no longer accepts prints. Only digital photos will be considered.
  • Event Information: Please provide the name of the event host (sponsor), event name, location (treatment center, park, etc.), city, and state. Also, provide your contact information, including your name, organization, phone, and email.

HOW TO SEND

  • Email to: .(JavaScript must be enabled to view this email address). Send digital photos only at a minimum resolution of 300dpi (preferred method).
  • Overnight digital photos to: Coping NCSD Issue, 1107 Lakeview Drive, Suite C-2, Franklin, TN 37067.
  • Mail digital photos to: Coping NCSD Issue, P.O. Box 682268, Franklin, TN 37068-2268.
  • To send digital photos by FTP: contact .(JavaScript must be enabled to view this email address).

NEED HELP?

  • Email: .(JavaScript must be enabled to view this email address)
  • Call: (615) 790-2400

We’re excited about NCSD 2016, and we hope you are too. Join with other Coping readers in celebration and sharing this special day!

♦ ♦ ♦ ♦ ♦

Cook for Your Life

When you have cancer, cooking isn’t just about healthy eating.

by Ann Ogden Gaffney

Wellness image

I love to cook, and I live to eat. Two cancer diagnoses couldn’t put a dent in that, but they did get me thinking about food.

When you have cancer, cooking isn’t just about healthy eating; it is also about feelings, both physical and men­tal. Cancer treatment protocols have their ups and downs, bringing good days and bad, and although each day is different, a rhythm starts to build that allows you to predict when you’re going to feel your worst or be at your best. Good food can help you get through all of it. It can soothe, or it can excite. It can certainly make you feel human again.

During the often arduous cancer journey, cooking also gives you con­trol. When cancer forced me to hand my body over to my medical team, I found that cooking for myself and my family gave me a positive path back into life after doctors: At least I could control the food I put into my body. Many of the people who come to my Cook for Your Life classes feel the same way. And cooking can bring a rush of instant gratification at a time when it feels as if you’re always wait­ing for something, whether for test results or CAT scan results, or your doc­tor, or simply for the grueling months of treatment to be over. Cooking a meal that gives you healthy deliciousness in minutes equals control over an impor­tant part of your life.

There are more than 15 million of us in the United States either living with cancer or having survived it. I want to help us all to eat better, stay well, fight cancer with our forks, and to cook for our lives.

Cancer survivors are frequently told what to eat for nutrition,
but not shown how to prepare it.

Author of Article photo

Ann Ogden Gaffney

Cancer survivors are frequently told what to eat for nutrition, but not shown how to prepare it. To fill this gap, I decided to write my own cook­book, Cook for Your Life, with the recipes labeled according to the health considerations cancer survivors must take into account when preparing meals. Here are a few tips from my book on what to cook for certain cancer-related nutrition concerns.

For Fatigue
Fatigue is, sadly, a necessary evil of many treatment protocols. While there is no “magic” food to combat these feelings of ex­haustion, try recipes that offer easy, comforting options for when you may be too tired to prepare a complex meal. Although sugary treats will pick you up temporarily, excess amounts of refined carbohydrates can increase feelings of lethargy once the initial burst of energy wears off, so the foods in this category should be lower in starches.

Easy to Swallow
A side effect of some chemo drugs is painful mouth sores and cankers. People undergoing radiation to the head or neck will also have to deal with severe mouth or throat soreness, and many find it difficult to eat at all. I would advise anyone in this situation to consult a registered dietitian. Recommended foods are those that are soft and smooth and low in acid, to minimize irritation. Food should be eaten or sipped in frequent small portions and served warm instead of piping hot. To make foods easier to swallow, add smooth, fatty foods like avocado to, say, a smoothie, and even unsalted butter to a soup.

For Nausea
Go for easy-on-the-stomach, bland-tasting, inoffensive foods and beverages: think bananas, white rice, applesauce, and plain toast.

Bland Diet
A bland diet is made up of foods that are soft, not very spicy, and low in fat and fiber. This diet may be used to ease ulcers, heartburn, nausea, vomiting, diarrhea, and gas, or may be recommended after stomach or intestinal surgery. It may also be advisable to follow a moderately bland diet leading up to or following chemotherapy infusions, particularly if you’ve experienced digestive side effects in the past.

When you have cancer, cooking isn’t just about healthy eating;
it is also about feelings, both physical and mental.

High Fiber
A high-fiber diet is recommended to promote regular bowel habits, manage weight, and encourage general health. This diet may be particularly important for someone who is prone to constipation or is experiencing irregularity as a result of treatment. Twenty-five to thirty-five grams of fiber per day is thought to be ideal, but increase the fiber in your diet slowly; if you’re not used to it, it can cause intestinal dis­comfort, aka gas. As you add more dietary fiber, make sure to increase your fluid intake, too. It will help you avoid constipation.

Neutropenic Diet
Some medical centers recommend this diet (otherwise known as “low microbial” or “low bac­teria”) if neutrophil (a type of white blood cell) levels get too low to ad­equately protect from infection. When white blood cells are low, microbes your body typically deals with easily could send you to the ER. A neutropenic diet is low in foods that are prone to con­taining bacteria, helping to keep you well. Neutropenic diet restrictions vary depending on white blood cell counts, so make sure you talk to your doctor for specifics. Usually, raw foods, sushi, and food from buffets, salad bars, and delis are off limits. Some medical centers also add probiotics (like yogurt) to this list, so it’s always best to ask. These no-nos may make you feel as if you can’t eat anything, but this isn’t so. There is still a lot of tasty, good food out there for you. (See sidebar for a delicious, neutropenic diet-friendly summer sauté.)

What I Cooked While on a Neutropenic Diet
During treatment, my oncologist put me on an antimicro­bial diet, which meant that I could not eat any raw or undercooked foods. This diet can feel like horrid depriva­tion. My doctor told me that raw fruits and berries, crunchy veggies, and sal­ads were banned. Sushi, rare meat, and fish also were off the menu, as well as certain cheeses. I was also warned to be wary of commercially prepared foods, so I couldn’t rely on takeout from delis, or food from hot tables and buffets.

The restrictions sink in as soon as you realize just how much the forbidden foods were part your daily meals. I had the particular misery of being put on this diet in the summertime, so I was denied that delicious first taste of local strawberries, or the joy of biting into a juicy, ripe peach. My favorite salad greens were out of bounds, too. I wan­dered like a bald ghost through my favorite greenmarket, knowing that I couldn’t indulge. But then I focused on what I could do to have all the for­bidden things I loved: I cooked them.

I made delicious chilled salads of lightly steamed summer vegetables or roasted root vegetables dressed in tangy vinaigrettes. I enjoyed wilted greens and herbs, drizzled with a little olive oil, at room temperature. I made compotes from soft summer fruits, which I chilled and ate on their own or froze into gran­itas or gelatos. No deprivation there.

The moral of this story? If you can’t make lemons into lemonade, make cherries into compote.

♦ ♦ ♦ ♦ ♦

Ann Ogden Gaffney is the founder of Cook for Your Life, a cancer-fighting nutritional program that offers free hands-on cooking classes in person and online to cancer sur­vivors. Ann is the author of the cookbook Cook for Your Life, from which this article is adapted. She is also a two-time cancer survivor.

Consult a registered dietitian about your nutritional needs, and get more recipes and cooking tips from Ann at CookForYourLife.org.

Reprinted by arrangement with Avery Books, a member of Penguin Group (USA) LLC, A Penguin Random House Company. Copyright © Ann Ogden Gaffney, 2015.

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

Putting Together the Pieces

by Cynthia Cox

Inspiration image

Cynthia Cox

The waiting room in the radiation center is quite stellar, and I should know. With my chemotherapy, surgery, and hormonal treatment, I’ve been in many different waiting rooms this year. How­ever, this one is a little different from the rest.

When I go in for my first day of radia­tion, a woman is playing guitar and singing, which does wonders to calm my nerves. Lovely pieces of art hang on the walls, many of which were created by survivors, and big windows offer a brilliant view of a peaceful garden.

These all contribute to the waiting room’s ambiance, but I’ve found that what I enjoy most are the puzzles.

Spread out on a big table in the middle of the room, a puzzle is always in progress – elaborate puz­zles with famous paintings, more simple ones depicting gorgeous landscapes, some with photographs of rural life. When one puzzle is completed, it’s replaced by another. Every person in the waiting room can contribute to the puzzle in the moments before they’re called back for treatment.

Each day, the puzzle progresses slowly toward completion, with various people put­ting in a few pieces here and there throughout the day. It’s exciting to watch the progress as I return each day for my treatment. The puzzle magically becomes more com­plete, as countless other unknown sur­vivors have worked on it in my absence.

Although we have to find the pieces that fit our own individual puzzles, none of us can do this alone.

I feel happy when I notice some­one else has found the missing piece I’ve been hunting for in vain. I feel a sense of pride in seeing the fin­ished product, knowing it was a joint effort among all those receiving treatment.

While lying on the radiation table one morning, it occurrs to me that the puzzles are a metaphor. All survivors have this one puzzle in common – how to beat cancer – and we are all working on a solution. Although we have to find the pieces that fit our own individual puzzles, none of us can do this alone. We rely on small contri­butions from others to slowly progress toward recovery. Like the waiting room puzzles being completed by unknown contribu­tors, many of the contributions to our health happen behind the scenes, dispersed by a panel of doctors or by unknown chemists in a lab.

In addition to this, much of our wellness can be attributed to small contributions from family and friends. For each person who brings a meal, offers a ride, or reaches out through a phone call, another piece of the puzzle is put in place. They’re all contributing to our healing and recovery.

As long as we each strive to find the miss­ing pieces, a little at a time, we can reach a solution. We are not alone in this journey; many others are helping us along the way. This knowledge has helped me cope with my own frustrations and fears. When I pause to be grateful for the assistance of others, it helps me keep going, piecing together my cancer recovery, one puzzle piece at a time. With the help of others, I know I’ll survive!

♦ ♦ ♦ ♦ ♦

Cynthia Cox is a breast cancer sur­vivor living in Corvallis, OR. She and her mother were both diag­nosed with breast cancer one month apart; they now are both in remission.

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

Together Against Cancer

The Quality of Your Relationship Matters

by Wanda Garner, MS, MA

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The doctor’s voice sounded muffled, as if it were coming down a long tunnel, while I sat with my sister-in-law as her husband’s proxy. His own cancer treatment and preparation for a stem cell transplant in another city kept him from going with her. I left the office in a fog from the shock a cancer diagno­sis creates. Cancer happens to families, and it trumps everything.

A cancer diagnosis brings the threat of loss to each partner, and both are terrified. How do couples navigate this unfamiliar, scary terrain? Do they turn to each other and confide their fears? Or do they turn inward, trying to be “strong” in order to protect their partner? Unfortunately, the latter often prevails, and couples lose the opportunity to in­crease their emotional connection when they both may be feeling isolated and alone. But how do you turn to your part­ner and share vulnerable feelings when to do so leaves you feeling exposed?

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Wanda Garner

It’s terrifying to risk vulnerability when your relationship already feels unsafe or disconnected due to the threat of cancer. It’s like being on the edge of a cliff and knowing you may jump, but also knowing there’s no soft place to land. The danger seems too great. Feelings are kept inside, or anger is displayed. And the result is greater and greater disconnection and aloneness.

Couples coping with cancer need a “safe haven” where they each will be heard and where their partner will respond with care, support, and reassur­ance. A safe-haven relationship is one where emotional connection is present; it’s one that serves as an “inner resource” helping couples cope better with stress and process fear.

How does a couple develop a safe-haven relationship? Some couples have learned to repair rifts in their relation­ship soon after they occur by talking from the heart about feelings stirred up in an argument. They share their universal needs to be seen, heard, and loved. How­ever, couples who do not repair these rifts end up in infinite loops of conflict about finances, kids, or sexual intimacy and never get to the root of the problem, which is usually about the longing to be loved and respected by their partner.

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When we are willing to talk from the heart about these longings, our partner can respond positively by drawing closer to us, thereby creating our longed-for connection. However, this closeness does not always happen after one con­versation, as many couples have been in conflict for so long that neither part­ner trusts the other. For these couples, it will take time and repeated sharing to build the trust required for their partner to reach back when a heartfelt fear is shared. Building trust takes a great deal of work, and perhaps some professional counseling.

Couples need to take the risk to express their fears. They need to risk overturning the silence or the anger that hides their true emotions. Physically touching or holding each other is very powerful and can help make sharing fears easier.

For couples facing cancer together, it’s important to work on developing a safe-haven relationship. This kind of relationship will offer the cancer warrior major benefits, such as reduced depres­sion and anxiety, a decreased sense of isolation, and a greater sense of control over life. When facing cancer together, the quality of your relationship does matter. To strengthen your bond, try having a L-O-V-E conversation with your partner. Listen with an open heart and mind, validate and acknowledge each other’s fears, and express your thoughts and feelings softly and simply.

You do not have to have all the answers; just listening, understanding, and being present are enough. You are all your partner needs.

Risk opening your heart, and allow your partner to do the same. A strong connection with your partner is like emotional oxygen. It’s a powerful nutrient for cancer warriors.

♦ ♦ ♦ ♦ ♦

Wanda Garner is a certified emotionally focused therapist and supervisor who leads couples workshops at the University of California, San Diego, Moores Cancer Center. For more information and workshop dates, visit her website, WandaGarner.com.

If you think your relationship might benefit from emotionally focused therapy, you can locate an EFT therapist near you by visiting the International Centre for Excellence in Emotionally Focused Therapy website, ICEEFT.com.

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

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.

♦ ♦ ♦ ♦ ♦

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.

♦ ♦ ♦ ♦ ♦

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.

♦ ♦ ♦ ♦ ♦

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 uncertainties, something beautiful happens – a space for newness and fresh ideas opens up.

Cancer has pushed you out of your comfort zone. Your life looks different now. And a rebuilding is about to take place. After what feels like the hundredth doctor’s appointment or chemotherapy infusion, you may find yourself craving forward movement in your life. You may begin to seek ways to reconstruct your identity, infusing your new life after cancer with beauty, meaning, and joy. This process is one of creativity – of learning new things, discovering who you are, and deciding what is important to you now.

Your cancer does not define you, but you can use your experience to grow as a person and to find new passions and interests.

Creativity can mean many things. It can mean expressing yourself through art, writing, music, or design. But it can also mean saying yes to new experiences. As humans, we tend to stick to what we know, to what is comfortable. But there is nothing comfortable or familiar about a cancer diagnosis.

You can choose to resist the changes cancer brings about – to cling wildly to the life you had before cancer (even though you know you can never really go back). Or you can accept the new possibilities that lie before you with a gentle openness to change.

If you allow yourself to say yes – to the yoga class, or the local art group, or the therapeutic writing clinic – you open more doors to a new, reconstructed identity. This is where you will find your new normal. When you open yourself up to new possibilities, beautiful things will happen.

Your cancer does not define you, but you can use your experience to grow as a person and to find new passions and interests. When you look at it this way, creativity is ultimately about self-discovery, about open­ing your eyes and your mind to a unique perspective. One that offers you an opportunity to rebuild from loss and embrace courage through creation.

♦ ♦ ♦ ♦ ♦

Caitlin Glenn is an oncology clinical social worker at Hoag Family Cancer Institute in Newport Beach, CA, where she works directly with cancer survivors and their families, as well as develops and facilitates supportive programs to increase cancer survivors’ quality of life, encourage creativity, and provide therapeutic outlets.

This article was 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.

♦ ♦ ♦ ♦ ♦

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.

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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.

♦ ♦ ♦ ♦ ♦

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

Inspiration image

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.

Inspiration image

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

Wellness image

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

Wellness image

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

Inspiration image

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

Wellness image

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

Knowledge image

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

Inspiration image

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.

Inspiration image


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.