My primary truth of the last two plus years was that I was dying. I was assured by scientific research and oncologists that my gastric cancer would likely kill me in less than five years. I have written about earlier stages in this journey (Schell, 2009a, 2009b). When my cancer recurred, the numbers connected to my remaining life changed to “months” or, if I took part in the research trial I subsequently entered, “one-and-a-half years.”
I am not an optimist. Indeed I am somewhat bloody-minded. Furthermore, I am deeply introverted. The way I lived my dying was deeply shaped by my introversion and bloody-mindedness. I consciously and unconsciously prepared to die. I consciously planted shrubs, trees, and perennials with the thought someone else would enjoy the flowers or the fruit. My wife and I consulted a lawyer about financial wills, living wills, and healthcare power of attorney. I kept my patients aware of the medical realities of a grim prognosis and spent considerable effort trying to track their and my reactions. Unconsciously, I began withdrawing from people and from involvement in future-related activities. I had the rest of my short journey clearly laid out. My spiritual life was deepening, from conscious intent and, perhaps, from my soul’s urgency to be more complete in this life. When I imagine some after-death summing up of my life, I frequently find myself apologizing for how immature I still am, like a partially ripened pear.
I have lived the months and then the year-and-a-half. I am not dead. Now, in July 2010, I have been off treatment for three months. I am the only person in the research trial who has no evidence of cancer on his/her PET (Positive Emission Tomography) scan. How sad for my compatriots and their families, who entered the study with their own desperation-fueled hope. My oncologist is delighted with me. There is no guideline that predicts how much cancer-free time I will have, or when it will return, but for now I have received a reprieve from my sentence. The sentence is not dismissed or voided; rather it is continued with an indeterminate end point. My cancer may recur next week, month, year, or perhaps never.
I return to Duke Medical Center every eight weeks for blood work and a PET scan. Each return brings anticipatory fear that the cancer will have returned. A clear PET scan brings me relief but not delight. Please do not misunderstand: I am glad to have more of a future life. Note my use of the qualifier “more.” We who have recurrences of a deadly disease — even when we get reports that it is gone — live knowing that death and suffering, personified by our disease, awaits us around the next corner.
In many ways life is much harder now than when I knew I was dying. I was prepared for death, not life. I was following a clear path with a definite end. Perhaps it is particularly difficult to dream a new beginning when the beginning may end with my next PET scan. I am more anxious and acutely feel being lost, which I did not feel in the certainty of my impending death. There is something in many of us that prefers certainty, even dire certainty, over the state of not knowing (Smith, Lowenstein, Jankovic, Ubel, 2009). In my uncertainty I am more difficult to live with. I am moodier. The stable routines of my life have changed. Foods I used to enjoy are no longer palatable. My energy level, that I took for granted, is much diminished. Exercise has been a core component of my life for many years. Now it has been several months since my last workout.
For now, life is lived within the two-month cycle between each PET scan. In the mornings, defenses intact, I do well, most days. I am in my third cycle. Each cycle begins with the oncologist telling me I have a clear scan. Barring any new symptoms, relief lasts about a month; then worry and anxiety begin to seep into me. By the last two weeks of the cycle I am withdrawing and becoming testy. I am emotionally absent or labile, including with my wife. Thoughts of my death from cancer and memories of my son’s death are present. In the afternoons I begin to read compulsively. I may read a novel a day during the last week as I attempt to hold myself together. In the evenings, I will drink two glasses of Chardonnay, eat Jolly Rancher candies and have Edy’s brand fruit popsicles. Then it is time to drive back to Duke, fearfully wondering what this next PET scan will reveal.
I am new to my status as an off-treatment patient with a history of recurrent gastric cancer. There is research data to show that I am living the “normal” torment of a patient in my position. The studies show that, if I do not have another recurrence, living in the two-month cycles will get better, but I am not there now. I cannot control the two-month cycles—I can only continue them, limiting damage during them and trying to stop obsessive thoughts. The cycle’s life is powered by all in me that wants to live, a force much greater than consciousness.
I don’t hear a calling, or discern a holy pilgrimage to undertake, that matches the unexpected wonder of being alive. I miss the rock-solid, sad peacefulness that came when I knew I would be dead. By “holy,” I mean that which will fill my being with the yes-ness of my existence. My holy calling may primarily be psychotherapy, though with a different slant and with far fewer patients. For now, I am lost. My sense of my self’s possibilities has grown much larger, but there is no longer a pole star guiding my way. I no longer want to live, even if I could, the way I used to live. The known boundaries of my self and of my place in the community no longer fit; when I try to wear that old stuff it chafes and stifles. It is not time for me to know what will emerge from me. It is time for me to search, in trust that what is next will come in its own time.
A still-unfolding blessing comes in the form of the tears that my intimates, including many of my patients, have shed at the news of my continued living. One patient, whose circumstances have not changed, calls less and comes to sessions less frequently. Was she caring for me by bringing me the struggles of her life? Another, having heard I am doing well, returned to therapy and explained she had left to protect me from being drained by her needs. What a poignant commentary on her life. My heart has been stretched by all the expressions of love at my continued life and grief at my anticipated loss. This profound gift I could only have received through my cancer. Some of this awful gift from God truly sucks. Some of this awful gift is awesome.
* * *
It is now mid-November. I returned from Duke after my latest PET scan three days ago. I drove the three-and-one-half hours home crying, disoriented, and feeling even more lost. My gastric cancer has returned. For the moment there is no future, save a grim one. Yet, in the morning as I twirl down my driveway to get the newspaper, I am enveloped by the beauty of God’s creation.
REFERENCES
Schell, B.(2009a) Don’t Go Anywhere. Voices, 45, no. 2 (2009): 53-55.
Schell, B.(2009b) Awful Gift. Voices, 45, no.3 (2009): 52-56.
Smith, D., Lowenstein, G., Jankovic, A., Ubel, P. (2009) Happily Hopeless: Adaptation to a Permanent
Bruce Schell received his PhD in 1970 and practiced in Asheville North Carolina. He was a member of the Academy for decades. He retired as a professor in 2008 and continued the practice of psychotherapy. He was married to Kay Loveland for much too short a time. He died December 27, 2011 at the age of 68.
