My life was irrevocably changed that cold December afternoon in 2001. From that day til now I have been involved in a process of redefining myself, a process instigated by my disease and shaped by the medical treatments and procedures I experienced.
As healthcare professionals we perform various activities . We use a variety of instruments and tools. And these activities, these procedures can take on the aspect of ritual. For us, these rituals and instruments can lend a sense of order, of reassurance, a sense of comfortable familiarity, and even a feeling of professional pride.
But for patients these same rituals have starkly different meanings. They hint of the unknown, of discomfort, of pain. These rituals are events which are done to us, rather than by us. We become, by definition, the receivers of interventions, the objects of medical machinations. At some point we must submit, …if not frankly acquiesce, …to the results of decisions … which we found ourselves forced by circumstance to participate in to whatever degree we were able.
Let us imagine a typical chemotherapy suite. Rows of recliners, cabinets with supplies, copious surfaces on which to spread out charts, orders, and labs, hopefully sunlight streaming in from somewhere. This is where I work, or used to work. I am there five days a week in a very circumscribed context, a gestalt composed of professional identity, a social and collegial network, and the necessity of gainful employment. This is a second home, a place where a large part of my waking hours are spent, a familiar setting in which I derive a large measure of self-esteem. This has become a wholly natural and mostly predictable part of my life.
During my first consultation with my oncologist I was led, innocuously enough, into a similar chemotherapy suite simply to be weighed. I paused just briefly before stepping onto the scales, staring at those chairs. I would soon be occupying a recliner. I would soon be on the other side of an IV needle. My world was already starting to change.
All of the same physical elements in which I had immersed myself for the previous 14 years were present. But they had been rearranged. My life’s paradigm had shifted, the context of daily experience had tumbled. This new gestalt was an amalgam of uncertainty, fear, anxiety, dependence, and what we refer to so delicately in medicine as “insult”.
And my new identity as a cancer patient was informed by a rather rigid constellation of rituals. Getting up in the dark for early morning labs, waiting in the lobby for the differential, getting weighed, enduring the peripheral IV start, succumbing to the warm wave of stupor as the pre-meds entered my veins, awkwardly stumbling out some four or five hours later, and always accompanied by some caretaker friend.
This gave way to the rituals of survivorhood after my first relapse. The continuing ritual of lining up bottles of prophylactic medications on the kitchen counter, monthly follow-ups, relentless vigilance for any signs of relapse, repeatedly responding to the comments of others on “how good” I looked, then watching the mirror each day for signs of health – improving skin color, roundness returning to my face, gauntness receding.
After twenty-three months these rituals again replaced by those of leukemia. Relapse brought the need for retreatment. New research by now pointed to the subcutaneous rather than intravenous use of my drug, Campath. A new constellation of gentler rituals replaced those original ones. No chills and rigor this time. Soon no need for stuptifying premedications. I no longer needed a caretaker for chemo sessions. I ws able to drive myself. I was conscious on treatment days. My weight was stable. Eventually the rituals of blood transfusion wre added to my new world.
Then came my stem cell transplant, preceded by near-lethal doses of chemo and followed by sterile vigilance against the spectre of opportunistic infections. The rituals of being severely neutrapenic – masks, gloves, restricted diet.
The the long, slow journey back to health, a road that I still seem to be traveling. The permanent passage to employment disability creating a new universe of rituals of daily living. The longer in relapse, the further out from transplant, the great weight of illness ritual begins to recede, to be replaced by an ever-changing sense of normalcy. It’s a long journey home.