My leukemia has returned, both inside and outside my bone marrow. I have had so many Indiana Jones–type escapes. There has to be a last time, and my family and I are all wondering, Is this it?
My mother died in May of this year. We had a service for her in Chester, where she owned the farm. My sisters and I and many of our children spoke. This was my contribution.
After a healthy summer and an optimistic September, I wipeout again and spend months in the hospital. Once more, I rebuild my strength and regain not hope so much as my defiance.
I come out of the hospital feeling weak and helpless, expecting to return any day. New scans show my tumors disappearing. Gradually, I gain strength. I enjoy spring more and more until I am doing things that I probably shouldn’t.
This is a story about some of my worst moments. It has taken me a couple of months to feel ready to share it. There has been better news since, which I will describe soon.
As I wait for evidence that any of my treatments are working, I try to be realistic about the progression of my disease.
The daily calendar in my hospital room has been blank since January 4th. That reflects my uncertainty about what the future might hold.
After three years in remission, I have relapsed. I find myself back in the hospital at the beginning of another lap in a journey I hoped was complete.
As the transplant approaches, the number of tests increase my fear. Each test raises the possibility of new pathologies. And I finally hear a number for my chance of survival. But I have to jump.
Whenever I visit the outpatient clinic, I share my principal source of distress. I dread the progression of my illness. I am terrified of what will happen after my stem cell transplant.
After nine weeks, I am finally discharged from the hospital to enjoy a few weeks of normalcy before I return for my stem cell transplant. I expect it to feel like a holiday.
As I learned to manage my creative process, as I found the book I meant to write, family found me. I had spent so long trying not to live my father’s life. Now my life started to resemble his.
“Whenever I look at you as a boy with your father,” Suzanne told me once, “I see Caleb and you but with different heads.” A sudden setback makes me worry about what else Caleb and I will have in common.
Remembering how I had an idea for a novel. I left New York to focus on the idea. Deep focus immediately established that I had no compelling story and only the vaguest sense of what I wanted to say.
Remembering what it was like to finally start writing only to discover I had no ideas. Morning after morning, month after month, I waited tables at night and then woke up to make no progress writing at all.
Health gave me a confidence that cancer took away. When I turn to face death, when I start to ask questions, the facts swim or shimmer and I can’t see clearly at all.
During chemo, I feel formless, almost deboned, as if the inner skeleton of my history had been removed. I am no longer who I worked so hard to become.
Remembering how watching my father be forgotten shaped me as a teenager. So vital, so passionate, so present, yet he sank from sight. Life flowed above and below and all around his death, closing over him like water.
I have a biopsy on Day 21. Six days later I have heard nothing. I become convinced that doctors are withholding information, and I struggle with the memory of what my father’s doctors withheld from him.
