More than 12 years ago, my oncologist gave me the great news that the Non-Hodgkin Lymphoma (NHL) that had been afflicting my body was in remission. After a grueling nine-month program of chemotherapy and immunotherapy, there was, he told me, no discernible trace of NHL in my body. The news made me leap for joy. I returned home to celebrate with loved ones. Champagne had never tasted so good!
Soon thereafter I came to the sober realization that remission is a slippery slope for cancer patients. Indeed many friends, colleagues and loved ones think that the state of remission means that you're cured, which, of course, is not the case for most cancers. Remission puts you in the indeterminate space between health and illness, a space that can be fraught with doubt, anxiety and fear -- of cancer's return.
Remission is a state during which your disease is "managed." During this period of physical and emotional limbo, you go for checkups at arranged intervals. From my anthropological vantage, I see these as remission rites. In my case the rites included blood work, a physical examination, and a CT scan, procedures that produced medical evidence that would be evaluated and discussed during a doctor visit. If the results of these rites were good I'd still be in remission, which meant that I would go through the same -- or slightly modified -- set of remission rites six months or one year later. If the results were not good, I'd reenter the prison house of treatment, hoping again, like Sisyphus, for a weary return to the state of remission.
Remission is sobering and taxing. But as you move along, the time between remission rites can become more or less normal. Everyday life can take on a pleasant routine. Your friends and loved ones no longer have to think so much about your disease. Some people you know may think that you have beat cancer or that you're a fearless survivor. Cancer patients can also fall into the false consciousness of having toughed it out, of having survived a painful ordeal, of having fought the enemy and won.
I certainly include myself in that all-too-common category. Ongoing remission gave me an unwavering confidence. At 10 years I felt deep gratitude for an unexpected extension of my life. At 11 years I knew that the uncertainties of remission would not slow me down. I still felt the passion to teach, the itch to travel, the desire to write more books, the wherewithal to initiate a research project and the perseverance to produce a documentary film.
Even so the specter of yet another remission rite always gave me pause. The remission rite is not unlike a trial the verdict of which can unalterably change your life. Even though I had become a 12-year remission rite veteran, the prospect of going to The Cancer Center three months ago frightened me.
My doctor and I chatted about our travels and our families and friends. He asked me routine questions about night sweats and unusual lumps, none of which I had experienced. Then he palpated my body looking for swollen lymph nodes or other potential abnormalities -- never a pleasant experience, especially if your physician finds something unexpected and says:
"What a minute, what's this?"
"What do you mean?"
"Let me feel that again." He examined my underarms and my elbow a second time. "You've got some swollen nodes. They're tiny, but they're there."
How ironic that this exchange was almost identical to the dialogue I shared 13 years earlier when my primary care physician discovered an abdominal tumor. It's funny how your life can be turned upside down in matter of seconds. The swollen nodes might have resulted from an infection or from the scratches I routinely get from roughhousing with my dog. By the same token, the swollen nodes might be a signal of lymphoma's return.
My doctor suggested we wait to see if the nodes would persist. Trying my best to live with such unforeseen uncertainty I returned one month later. Physical examination revealed the ongoing presence of the nodes. He ordered blood work and a CT scan, which due to scheduling issues and snow delays took place late in January. During the holiday season my life took on an unexpected and unwanted twist, reminding me once again of remission's innumerable difficulties. I tried to be festive and I succeeded to some extent, but I couldn't completely shake the dread of cancer's potential return.
Having avoided CT scans for many years, the one I endured in late January proved exceedingly stressful. What would the results reveal? Would I again be a regular guest in the treatment room? As it turned out the CT scan was normal, which was great news -- more champagne. This time the celebration was intense but short lived. Given my medical history, I know that remission rites will be permanent feature of my future, which means that my existential limbo will persist.
Even so, you can learn to live -- and live well -- in remission. Beyond its stresses and strains, remission can be space of great creativity and insight, an arena of what John Keats called "negative capability" -- learning to live with psychological and physical uncertainties. Indeed, my continuous state of existential limbo has enabled me to better understand the human condition, which, is a good thing for an anthropologist.
Being a remission rites adept, however, does not make me a "fighter," a "warrior" or a "survivor." Like most cancer patients, the realities of remission make me a person who simply tries to live fully within the limits of his circumstances.