Living With Cancer

When people sometimes suggest that I've "beat" cancer, or that I've put it put it behind me, I never agree. Once you've had cancer, I say to them, its presence never strays far from your awareness.
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It was 10 years ago today that I was diagnosed with lymphoma, a cancer of the white blood cells. After more than a month of what seemed like an incessant number of suggestive but inconclusive diagnostic tests -- blood work, sonograms, CT scans and a CT scan-guided biopsy -- I was told that the grapefruit-sized tumor in my abdomen was filled with follicular lymphoma cells. I was informed that although follicular lymphoma -- the most common sub-type of non-Hodgkins lymphoma -- responds well to treatment, it remains incurable.

In one day my world was turned upside down. Until my diagnosis, I thought little about illness, and less still about my mortality. For years I had followed a healthful regimen. I ate lots of fresh vegetables, consumed only small amounts of red meat, drank moderate amounts of alcohol, exercised regularly and enjoyed a satisfying personal and professional life. I was not a prime candidate for cancer. And yet there I was, in a cold and sterile examination room -- a relatively young man with an incurable disease. My life would never be the same.

Soon thereafter, I embarked on a path of aggressive treatment, very much relieved that the psychologically debilitating uncertainties of diagnosis were over. Like most people, I did not know what to expect from treatment. Chemotherapy was no cakewalk, but it did force me to change my routines. The world slowed down. What's more, in the treatment room I met an array of people whose quiet unassuming "profiles in courage" both humbled and inspired me.

After nine months of treatment, CT spans indicated that I was in remission -- a strange place to be. In remission, you are -- for the most part -- free of symptoms, but you are not "cured." Somewhere between sickness and health, you are told to come back every six months for CT scans to determine if you have remained cancer-free -- or not. If you remain cancer-free, you make your way further into the nether world of remission. If the cancer has returned, as is often the case with follicular lymphoma, you begin a new regimen of treatments that continues until you get back into remission. If the treatments fail, you may try other treatment options, enter a clinical trial or stop treatment altogether. In remission, you get to be like a defendant in court, waiting for what seems like a life or death verdict -- not an easy place to be.

There is, of course, no perfect way for cancer patients to deal with such existential upheaval. Some people in remission become more religious. Others may change their occupations, learn a new language, take up a new hobby or decide to travel more frequently. Because I'm an anthropologist, I attempted to cope with remission's uncertainties by revisiting my experiences as a young researcher in West Africa, where I spent many years as an apprentice to a traditional healer. That process eventually resulted in a book about my confrontation with cancer, "Stranger in the Village of the Sick: A Memoir of Cancer, Sorcery and Healing," in which I wrote about how West African ideas about illness and health helped me to confront cancer and cope with living in the sometimes confusing and always nebulous state between sickness and health -- between what I like to call the village of the healthy and the village of the sick.

Ten years after the initial diagnosis, what can I say about living with cancer? When people sometimes suggest that I've "beat" cancer, or that I've put it put it behind me, I never agree. Once you've had cancer, I say to them, its presence never strays far from your awareness. Several years ago, during a public lecture I gave, someone in the audience asked, "Do you often think about cancer?" My answer was simple: "Every day."

If that sounds depressing, it's not. The specter of cancer has both negative and positive aspects. It can make you crabby and angry -- the "why me?" syndrome. But because the presence of cancer makes you conscious of your mortality -- something that most of us in mainstream American culture don't like to think about -- it compels you to search and, in many cases, find what is truly important in life: contacting a lost friend, reinforcing family ties, traveling to a place you always dreamed of visiting, making some kind of contribution to the world. Looking back on the last 10 years, I can say that cancer prompted me to think much more about the future. It compelled me to try to meet the greatest obligation of West African healers: to pass knowledge on to the next generation, so that their lives might become just a little bit sweeter.

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