Introduction: X Marks the Spot: A Personal Perspective on Cancer and Exercise
February 13, 1988. The x-ray marked the spot -- non-Hodgkin's lymphoma. I heard the words and then couldn't take in the rest of what the doctor was telling me. As I gained a better understanding of what the diagnosis meant, I began to feel smaller and smaller as I pulled in with fright. My life was caving in, and I no longer felt like a free-spirited 24-year-old. I felt like the storm clouds had rushed in and were swirling around me and I was left blanketed in darkness. Alone, terrified, and confused, I was overwhelmed with decisions and emotion.
Like a horse with blinders on, I methodically plodded on through my final semester of nursing classes, the blinders blocking out what was happening to my life. Class met consistently at 8 A.M. and clinical assignment days began at 7 A.M. The regimen provided a distraction from the storm clouds, the only time the darkness from the clouds would lift to swirl above my head -- though remaining an ominous presence that was always with me.
In a deliberate effort to minimize my fears and cope with the diagnosis, I called my cancer the "little problem." If it was a "little problem" it couldn't be too serious, right? The little problem changed my outlook on everything. I developed an intensity, concentration, and passion to pursue excellence or at least do my best and to do what I truly felt was important. What a change for a University of Florida partying Gator! Before my diagnosis I was your typical college kid, floating through life without many worries, doing my work, not exactly focused or driven.
I was always curiously interested in pushing the limits and exploring new frontiers, and when I graduated from nursing school I wanted a job that was cutting-edge and research focused. Somehow I didn't realize, or perhaps it was denial, that when I accepted a position in a bone marrow transplant unit that all the patients would have cancer. This was a difficult discovery and realization for me during my first week of work, because so many of the patients' concerns were all too close to my own personal struggle. To make matters worse, we were treating a woman my age with lymphoma who everyone thought looked like my twin. We not only looked alike, but we had the same sense of humor and similar likes and dislikes. I couldn't cope with taking care of her, much less seeing her or hearing her status in daily reports. I would go home after an evening shift feeling overwhelmed by the intensity and emotion of the day. Although I had always been a natural athlete and competed in tennis, swimming, and running in college, I was overwhelmed with everything in my life and got fat, depressed, and hopelessly out of shape.
I knew that I needed to do something; I needed to move! All my life, physical activity had always been freeing and centering for me. Bicycling had always appealed to me as the ideal form of sport -- you got exercise, could go places fast -- and a childhood dream had been to ride across the United States. So, at the urging of a friend, I started bicycling with the local group. Little did I know that Gainesville, Florida, was a winter training mecca for cyclists, and that I was riding with world-class cyclists. When I realized this, I was delighted, amazed, and incredibly motivated to pursue more time on the bike. I dived into bicycling with my newfound passion and enthusiasm and much to my surprise was achieving more than I ever imagined -- my depression was resolving, I was losing weight, and I was winning races. I pursued cycling with zeal, enthusiasm, and intensity. I was determined to begin following the race circuit and to have a more flexible work schedule. My nurse manager was wonderful, and we negotiated a work schedule that allowed me to travel to races, set up a coaching and training business, and train to set three world records.
After many months of emotional struggle, I succeeded in sorting out my illness from those of my patients and learned that my experience gave me a different perspective and way of helping my patients. I credit cycling for helping me overcome this forbidding emotional challenge. My time on the bike often required a lot of concentration to stay with
the group, but when I rode alone, I had hours to mull over the beauty and troubles of life. This time alone on the bike was like therapy. For me, exercise was therapy as I learned to sort out my cancer, my treatment, and who I was and what I wanted to do with the next year, three years, five years. And what if I had ten years? I learned from cycling the discipline and commitment that helped me not only get through cancer treatments but pursue my life passion of helping people to live beyond their cancer.
Over the next few years of work in the bone marrow transplant unit, I observed that some patients didn't seem to suffer as much as the others. The primary difference in these patients was that they got up and walked around their room or rode the stationary bicycle that typically sat in the corner of every room, most often being used as a clothes rack for raincoats or purses. The patients who followed their own exercise routine seemed physically and emotionally healthier. Often these patients were able to push their wheelchairs out of the hospital rather than being pushed out by someone else. As I observed the patients who were physically active, I realized that they seemed to be experiencing the same benefits that I had received from exercise. Exercise seemed to reduce their level of suffering, fatigue, weight gain, depression, and anxiety. Because I was so intrigued with this phenomenon, I decided to return to graduate school to pursue a degree that would give me the skills to become a researcher and conduct the studies necessary to investigate and, I hoped, confirm the link between exercise and cancer recovery.
I took a rather circuitous route to a doctoral degree in nursing, but along the way I learned that many health care providers were afraid to have cancer patients exercise and that little research had been done to study the effects of exercise on cancer patients. Building on my knowledge of exercise science (I earned a bachelor of science degree in this field at the University of Florida in 1985), it seemed logical that an exercise program could be developed that simply adapted exercise to fit the physical limitations of a patient with cancer. By now, I was an expert patient and oncology nurse, and I knew what needed to be done, but persuading a professor to support this research was no easy feat. So, I started trying to develop the knowledge that I needed, and along the way collected a number of academic degrees that, in hindsight, have been very helpful.
After some searching, I succeeded in finding a mentor who was supportive of my cancer and exercise research, and I began a wonderful new life combining my background in sports, and nursing and my fresh knowledge of research. The doctoral program allowed me to start formally testing my theory that exercise could reduce some of the side effects of cancer treatment. Ironically, my mentor, Lillian Nail, Ph.D., RN, FAAN, was a lymphoma and breast cancer survivor, but unlike me a certified couch potato. She brought a challenging perspective to developing this area of research and one that forced me to examine ways to make exercise during cancer treatment something that any patient could do. During my studies, I would take Lillian to the gym to exercise regularly. One of the many things she taught me was that some people need a hand, extra support, and guidance in learning to exercise and transitioning to become a regular exerciser. Coaching Lillian helped me develop insight into key elements that help people begin and stay with an exercise program.
My doctoral studies were interrupted in January 1995 by a recurrence. I was devastated and felt myself screaming inside, like the painting by Edvard Munch called The Scream,
the familiar dreadful feeling of pulling in and shrinking as the dark storm clouds gathered. This time the clouds were darker and more ominous -- the greenish tint of clouds before a violent storm or tornado. Dispair, disbelief.
I struggled to pursue my work during chemotherapy and felt a huge obligation to exercise regularly since this was what I believed was the right thing to do and had helped me in the past. Besides, exercise was the tenet of my research. On the days following chemotherapy it felt impossibly hard to get up and move, but a walk or an attempt at a jog always made me feel better. I played tennis with IVs and PICC lines and felt stronger with every ball I hit, even if it went flying out of bounds. In 1997, I completed a Ph.D. in nursing at the University of Utah. Since that time I have been conducting research on cancer and exercise in newly diagnosed patients and in cancer survivors, always searching for ways to improve quality of life and reduce suffering.
Today, as I look back, I realize that I had no idea of the impact cancer would have on my life and my whole way of looking at the world. As distressing and horrible as the cancer experience was, I gained insight, strength, and the courage to pursue my dreams, which helped me to set three bicycling world records, win a national championship title, and become a leader in research on exercise for people with cancer. Although exercise is not customarily recommended or formally prescribed for cancer patients, I have learned through personal experience as a cancer patient, as an athlete, and now through careful scientific study with nonathletes that exercise can strengthen not only your body but also your soul.
My personal struggle with cancer, which includes recurrence and different courses of therapy, and my professional experience as an oncology nurse have given me a unique perspective to conduct research and teach others about managing their disease and healing. I hope the information in the following chapters will help you not only to begin an exercise program to strengthen your body and heal your soul bu...