Before & After Cancer Treatment

Julie K. Silver, MD, is an associate professor of physical medicine and rehabilitation at Harvard Medical School and a member of the medical staff at Spaulding Rehabilitation, Massachusetts General, and Brigham and Women’s Hospitals. She developed the STAR Program® (Survivorship Training and Rehabilitation), a best practices cancer prehabilitation and rehabilitation model of care that has been adopted by many hospitals and cancer centers.

 

In honor of National Cancer Survivors Day on 05 June, and we've shared an excerpt from her book, Before and After Cancer Treatment: Heal Faster, Better, Stronger.

 

The Genesis of This Book

When I finished my cancer treatment, I knew how to heal myself. I didn’t start planning to write this book, however, until four days after I returned to work. The idea formed in my mind when the president of my hospital at the time invited me to attend a lunch in honor of several women, some of whom were cancer survivors, who were receiving awards for their various exceptional accomplishments. Hosted by the Boston radio station Magic 106.7, this annual event is truly inspiring. Radio personality Candy O’Terry is the emcee, and it is clear that she is dedicated to helping cancer survivors, in memory of her mother.

On this particular afternoon, during my first week back to work after months of grueling treatment, I sat at a table with several other cancer survivors. I was bald and frail and had endured significant difficulty making the one-hour drive to Boston. It was hard just to sit there for the two-hour lunch, and afterward I was thoroughly exhausted. But it was worth the trip, because, as I listened to one of the recipients give her acceptance speech, I knew that I wanted to write this book.

I listened to this physician and cancer survivor, and I knew that she and I had a number of things in common. We were both doctors who were diagnosed with breast cancer as young women. At a time when we were expecting to raise our children and further our careers, a life- threatening disease derailed our lives. Dr. Crivello’s story is remarkable. During her teen years, Madeline Crivello had watched her mother successfully battle breast cancer. The experience would change the course of Madeline’s life, as she decided to become a healer herself. Following her graduation from medical school, she specialized in radiology. But, as sometimes happens with cancer, the family legacy came back to haunt her. On the eve of her fortieth birthday, Dr. Crivello was diagnosed with breast cancer. She, unlike her mother, was told by her oncologist right from the start that she had a terrible prognosis. As she received her award, she explained that her doctors told her she had a 5 percent chance of living another five years and a zero percent chance of surviving the next ten years.

When I saw Dr. Crivello receive her award, more than ten years had passed since her diagnosis and she was cancer-free. When she was done with treatment, though, there was still cancer in her body. The doctors had done all that they could, and when she asked them, “Now what?” they replied that there was nothing left for them to do. Unwilling to accept this verdict, she did some research and figured out what she needed to do to heal herself. As I sat there listening to her, I thought about the last conversation I had had with my oncologist, who is truly a terrific doctor. My chemotherapy was over, and I asked him, “Now what?” His response was, “You get on with your life.” But how?

I wasn’t anywhere close to the person I was before I started treatment. I felt as though I had aged considerably. My 3-year-old daughter would tell me, “Mama, you don’t look pretty”—the only way she knew to tell me that I didn’t look healthy. She was right. I didn’t look pretty, and I was far from being healthy. My cancer was presumably gone, but I was still a very sick woman.

I knew that no one was going to help me to physically heal after cancer treatment. Dr. Crivello had a similar experience, and countless others have as well. Time is a great healer, but I was an impatient patient. I wanted to heal faster and I wanted to be stronger. In short, I wanted to heal optimally. I realized that, as a rehabilitation doctor who had spent years helping people recover from serious injuries and illnesses, I had the knowledge to do this. I planned it all out in my head, and, when I heard Dr. Crivello speak and I looked around the room at so many others who had walked in my shoes, I knew what I wanted to say when I wrote about surviving cancer and healing.

The story that Madeline Crivello told was truly remarkable, and I do not want to imply that the information I present here will help people with incurable disease find a cure. That is not what the book is about. Rather, it is about improving your physical and emotional health no matter where you are in your cancer journey. Whether you are gearing up for treatment or you are aiming to improve your strength and get your life back after you have received cancer therapies—this book is about healing as much as you possibly can. However, we do know that there are a number of actions that people can take to help prevent cancer from occurring in the first place, and we are learning more about what people can do to stop cancer from recurring once they’ve had it. There is quite a bit of crossover between these concepts—what works to help you heal may also help to reduce your risk of cancer in the future. Where appropriate, I will review these issues. For example, in chapter 7, “Dance, Skip, and Walk: Exercise Your Way Back to Health,” I discuss how exercise may help prevent recurrence. In chapter 8, “NourishYour Body,” I explain what we know about antioxidants and whether they are helpful or harmful to people diagnosed with cancer (some of each, so be sure to read this chapter and explore healthier ways to eat). In chapter 12, “Tap into Your Spirituality,” I summarize knowledge gained in the emerging scientific field of psychoneuroimmunology and the research that has been done on how spirituality and prayer affect quality of life, stress, and immune system function. While I do not want to promise anyone that reading these chapters will save his or her life, there may be tips that will help some people do just that. At the very least, if you have been diagnosed with cancer and you are in the process of reclaiming your health, this book can help you get your life back on track.

 

The Journey Continues

Cancer survivors often function at a lower level—both physically and emotionally—than they need to. In the scientific literature, I have written about this many times, because having survivors function at the highest possible level is not only good for them and their families but also for society. For example, I wrote an editorial in the medical journal Cancer titled “Cancer Rehabilitation and Prehabilitation May Reduce Disability and Early Retirement.” This article explains to oncologists and other healthcare professionals how cancer rehabilitation is a critical part of oncology care and will help to improve the outcomes of those diagnosed. This has a big ripple effect and in turn improves the lives of their family members as well as benefits society. Indeed, there is an enormous cost to society when working-age survivors retire early or become permanently disabled. It’s good for survivors and their families to continue functioning at the highest level possible at work. Many survivors are older and have already retired, but, even if they have, it’s much better for them and everyone else if they continue to be productive members of society—engaging with their families, friends, and community.

In my own work, I knew I had many opportunities to help survivors feel and heal better. With some colleagues, I developed a model for cancer rehabilitation care that has been implemented throughout the United States and is now expanding to other countries. This is called the STAR Program and stands for Survivorship Training and Rehabilitation. The STAR Program is something that institutions adopt; it involves ensuring that their staff is properly trained and up to date on the latest research in survivorship care. Healthcare professionals in STAR Programs must put the patient first—patient-centered care—and focus on empowering the survivor and family members. They must also focus on specific outcomes, including how well the patient functions and how satisfied he or she is with the care provided.

The STAR Program is widely accepted as a best-practices model, or “gold standard,” for cancer rehabilitation and survivorship care. Most of the services are covered by your health insurance (not including deductibles or copays). Your hospital or cancer center may already have implemented the STAR Program—if you haven’t been referred to it yet, ask your healthcare team about it. You can find out more information and also see whether there is a STAR Program near you by going on the website www.OncologyRehabPartners.com.

It is especially important for all survivors to understand is that rehabilitation is not the same as general wellness or exercise classes. Exercise is usually very good for survivors to participate in, but this doesn’t mean that they should skip having experts help them with rehabilitation in favor of an exercise class. It’s important to begin with getting good advice from someone who is qualified to medically address the physical problems that occur with cancer and its treatment. In Figure 1.2, you can see how rehabilitation is different from general exercise and well- ness services. As you go through treatment, your oncologist and other healthcare professionals should be giving you guidance about what interventions you need and when.

It’s sometimes easier to understand how Figure 1.2 works if you think about rehabilitation in the context of stroke instead of cancer. Stroke survivors are first evaluated for their physical problems and then treated by a rehabilitation team of healthcare professionals. Their care is usually overseen by a physician and covered by health insurance. When they are finished with physical, occupational, or speech therapy, they may be transitioned to a hospital-based exercise class or program. There is still some oversight by healthcare professionals but less so than in the individualized therapy sessions they were receiving. Once they’re ready, they transition to a community-based or home-based exercise program. This is precisely how it should be for cancer survivors as well—they should be referred first for individualized rehabilitation services (which are different from general exercise or wellness services) so that what- ever physical problems they are having can be addressed from a rehabilitation perspective.

Getting the right help is important. But cancer is a worrisome diagnosis, regardless of your prognosis. We didn’t choose cancer; cancer chose us. In her autobiography, Margiad Evans writes, “Our health is a voyage: and every illness is an adventure story.” This is one adventure that I would much rather have skipped, but I had no choice. Now all I can do is move forward with my life as a cancer survivor. I don’t think that any of us in this ever-growing club, which initiates unwilling members, are completely fearless. I wish that I could take away any fear that you have. I wish that I could eliminate my own fears. But I know I can’t. Instead, what I suggest is to use whatever fear you have as a means of motivating yourself to do the best job that you can to heal. If you have to live with demons, make them work for you. Make them part of the healing  process.

By far my greatest inspiration comes from my patients and other individuals I have met through my work who have dealt with tremendous adversity—cancer as well as other serious illnesses and injuries. I have profound admiration for people whom I have watched live through some truly devastating injuries and illnesses and who seemingly handle their health challenges with grace. I have been an earnest student learning from them for years. One of these individuals is Trisha Meili, a beautiful young woman who was raped and beaten. You may have heard of Trisha—she has been called the Central Park Jogger. When I met Trisha, her outward appearance, soft voice, and ready smile give little indication of her enormous suffering. But on April 19, 1989, when she arrived in the emergency room, she had been brutally beaten. She had multiple fractures and her body temperature was 85 degrees. She was comatose and had lost so much blood that the doctors gave her scant hope of surviving. Yet she did survive, after a long recovery period. In her memoir, Trisha writes, “I built a life until I was twenty-eight, was struck down, and so had to build another. Two lives, and I’m proud of both.”

As I went through my own cancer experience, the words of mythologist Joseph Campbell kept coming back to me: We must be willing to give up the life we have planned, so as to have the life that is waiting for us. If you have cancer, then you are probably in the process of building another life. You may have heard people say that you need to find a “new normal.” I don’t really like that saying—I think it’s a bit of a cliché. I also think that survivors are often told to accept a new normal before they have healed optimally, and this may mean that they live with more pain, fatigue, and disability than is necessary. Wherever you are in your cancer journey and whatever the future holds for you, I hope that the information in this book will help you to be as strong as possible—both physically  and  emotionally.

 

References

W. Sheed, In Love with Daylight: A Memoir of Recovery (Pleasantville, NY: Aka- dine Press, 1999), p. 234.

M. French, A Season in Hell: A Memoir (New York: Ballantine, 2000), p. 60.

S. Sontag, Illness as Metaphor and AIDS and Its Metaphors (New York: St. Mar- tin’s Press, 1989), p. 3.

D. Chopra, Journey into Healing: Awakening the Wisdom within You (New York: Three Rivers Press, 1994), p. 17.

J. K. Silver, “Cancer Rehabilitation and Prehabilitation May Reduce Disability and Early Retirement,” Cancer 120, no.14 (July 2014): 2072–76.