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First Person: June 4, 1997
A former patient finds a calling helping others deal with cancer BY JIM BLACK '76 My oncologist said he could get my tumor into remission with six cycles of chemotherapy. I would have to take eight drugs during each three-week cycle, and every one had nasty side effects. My wife, Martha, and I shared his optimism, although we expected treatment to be difficult. The tumor shrank dramatically and quickly, but the side effects of chemotherapy took their toll. I had to be hospitalized for nearly 70 days with multiple complications: mouth sores, a blood clot, cellulitis, infections of the infusion port, and a mystery fever. I barely had time to assimilate each crisis before I was plunged into the next. I kept telling myself that I would bear whatever was necessary to get through treatment. Remission did not come easily. The tumor, which had shrunk quickly in the first few weeks of treatment, still showed signs of activity after six cycles of chemotherapy, and again after eight cycles, and again after nine cycles. My oncologist concluded that I had a resistant tumor that would require a bone-marrow transplant in order to-perhaps-achieve a cure. After each setback, I was consumed by depression and despair. It took several days to convince myself that I could go on, that I could attempt to continue with life, that I could cope with the specter of this disease that seemed to get more threatening as time went on. The sea change came just after the ninth cycle, eight months into treatment: a blood infection caused me to go into septic shock, leaving me delirious and near death. When I regained consciousness five days later, I had no idea what had happened. The infection was devastating, but the long process of recovery gave me time to reevaluate my situation. Six weeks later, in spite of my oncologist's warnings, I decided to refuse further treatment. Although I was relieved to be done with treatment, there was an 80-percent chance the lymphoma would recur within six months. But six months passed and I did not get sick again. I got better-my tumor mass shrank, and I started to sleep through the night once in a while. I allowed myself to believe that I might be able to regain a normal life. As I continued to heal, I felt the need to share experiences with other patients. Although I had returned to work and my daily routines were nearly back to normal, I remained in emotional and spiritual pain. My family and friends were empathetic, but they were not able to understand me the way other patients could. I started volunteering one afternoon a week on the outpatient oncology floor at Georgetown University's Lombardi Cancer Center, where I had been treated. I felt uneasy at first and approached patients tentatively, but gradually I gained enough confidence to circulate actively and engage them in conversation. Some kept their feelings to themselves, but many were eager to discuss their treatment and to hear about mine. They asked many questions: How fatigued did you get during chemo? How can I cope with all the side effects of treatment? Because I had the dubious benefit of having suffered nearly every side effect at least once, I was able to give fairly knowledgeable answers. Many patients were disproportionately worried about hair loss and its emotional and social impact. We talked about the benefits and drawbacks of wigs, hats, and scarves. Those who were nearing the end of treatment wondered if the fear of recurrence would always be a cloud hanging over their heads. I said that it never goes away, but decreases with time. I call that particular cloud "psychoma," the metaphorical cancer of the psyche. As we told stories and talked of our fears, I found that I was able to inspire hope in my fellow patients. Hope is by far the most important gift I can pass on to other patients. Sometimes, surrounded by humorless doctors, negative prognoses, and bleak statistics, it is all we cancer patients have. One day, after I had been volunteering for several months, one of the infusion nurses asked me to help with a distraught patient, a woman in her 50s. After I related my experiences, she told me the history of her disease. She had been aware of the lump in her breast for a year, she said, but had delayed consulting a doctor because she considered cancer an automatic death sentence. But in the course of our conversation her view began to change. She asked repeatedly about my treatment, seeking to reassure herself that I had indeed triumphed over a serious case of cancer. By the time we finished talking, her disposition had changed, and she was smiling. I took deep pleasure knowing that I had managed to lift her spirits. Other patients were less direct. One young man chatted for months about computers and desktop publishing-he seemed willing to talk about Anything But Cancer ("ABC," as we ruefully called this form of denial). He was so nonchalant that I began to wonder whether there was anything seriously wrong with him. Four months into our friendship, he suddenly asked in great detail about my experiences, then revealed that he had incurable liver cancer that could only be stalled. When he asked what I did to take care of myself, I talked about diet, exercise, and meditation. He has since learned to meditate, and his disease remains in check. We cancer patients form strong bonds. We are endlessly curious about each other's struggles, and we seek in others validation of the wrenching emotions that cancer leaves in its wake. We search for the "meaning" of our illness when there may be none. Why me? Why now? Was cancer some sort of message or just a genetic fluke? My search for meaning, like most, has been frustrating. I will never know what caused the lymphoma that took a year from my life and very nearly took me, and I can never be sure it won't return. But even cancer can have its benefits. I have discovered in myself an ability to counsel and calm people in crisis. My cancer has given me a calling and a way to help others that I have found immensely rewarding. Jim Black '67, an executive in a printing firm, lives in Cheverly, Maryland, and has started a support group for cancer survivors.
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