I was sitting, trying to write letters with the IV in my left arm. I was in the back room of my hematologist’s office: with its desk, examining table and worn back issues of magazines, where the “chemo” was blessed and administered. I waited as the initial fluids infused, feeling the room-temperature solution tingle up to my shoulder as it mixed with my body-temperature blood. The day was gray, with snow forecast. The Pittsburgh view from the 11th-floor window had changed over the months of treatment only in the amount of afternoon light. They’d made special accommodations for me: the 4 p.m. chemotherapy allowed me to be a doctor as long as possible before relinquishing myself to the role of patient. The nurse came in to administer the medication designed to kill my leukemic cells, to change IV bags and then to leave me in solitude. I lay down on the examining table, insulated from its cold leather by the thin white paper; I turned away from the room with its fluorescent brightness and faced the wall. Sleep came easily, as the combination of leukemia, chemotherapy and my busy schedule had left me extremely drowsy. An hour later I awoke as the nurse took out my IV, saying it was time to go home, reminding me the next dose was in two weeks.
As best I could, I walk-ran to my car and drove home, cursing the slow drivers, red lights, distance and my increasing nausea. I slogged up the dark stairs to the bathroom, talked myself out of vomiting as I undressed, and took what I called my “magic meds.” The first was designed to prevent the rapidly rising nausea, but was of insufficient strength. The second was an amnestic, a memory-eradicating drug that rendered the former’s insufficiency unimportant. I set my alarm for four hours later, the time for repeat doses. I called home; my mother answered with a voice that knew who was calling. The conversation was brief: yes, my blood counts had been reasonable; yes, I got my chemo; yes, I was home; yes, I was going to sleep; yes, don’t call me; yes, I would be OK.
My next brush with reality would be 24 hours later when, still forgetful, reeling and drained, I would try to drink or eat. Any vomiting in the previous day was like a dream, a short wretchedness full of the smell of cold porcelain and unwashed floors that might or might not have actually happened. I hated being alone. I hated being sick alone. Yet I didn’t want to be seen as sick and out of control. As a physician, I had always been the one in charge of the patient, of the illness. Now it was upside down, backward, ultimately and inexplicably wrong: I was the patient, controlled by my illness and its treatment.
I kept up a frenetic pace on clinical service, with regular months and weekends on call, available to my patients and to the physicians and students I taught. I continued my research, despite the interruptions of days missed. I still continued running several miles every day between chemotherapy treatments. All this in a vain effort to appear whole and unscathed by illness. In the days immediately following my diagnosis, I found myself in the library reading about my illness, only to become depressed when looking at the ominous survival curves and, inevitably, reading case histories that sounded all too familiar.
When I was hospitalized for a month with fever, I looked forward to having visitors. But when they arrived I didn’t want them, preferring solitary desolation to seeing the pain in their faces. My life was being attacked and destroyed, but I was used to battles that were private, not public. I remember the face of the Mayo Clinic specialist when he told me my diagnosis. I had seen him because a mass had been found on my chest X-ray, which I had taken because I thought I’d cracked a rib from a persistent cough. His look said everything even before he took a slightly deeper breath: “Listen to this, I don’t want to have to say this twice.” He explained my diagnosis as I, benumbed with disbelief, heard almost none of his words after “hairy-cell leukemia.” I felt as if I were a spirit in the room, watching the two of us; I felt more sorry for him than me because of the news he carried.
The counsel of the hematologist on the day of diagnosis - the need for my spleen to be removed and, later, a major chest operation to remove the mass - had little impact on me. My mind was frozen, paralyzed and subservient to my fate. I tried not to betray my panic while I fought back tears and told myself to “be brave,” although the idea of “being brave” was as remote as other feelings during the first days and weeks of facing the hidden foe that was taking over my life. Like the vomiting that was to come, it all seemed a dream.
And then over a year ago my bone marrow was declared “clean”; I was delivered into the state of grace known as remission. I was finished with chemotherapy, rid of the evil that was my own DNA, with my altered life before me. The leukemia had given no respite in its relentless mission. It had no rules except division and multiplication, and took part of me with it when it left, changing forever that part of me which remained. For those cells didn’t just die, leaving no trace. Friends feel the weight of my fight. When I’m asked how I am, the answer “fine” is no longer enough. I have to add that my chest X-ray is unchanged and “counts” are normal, without a sign of relapse. My chest X-ray will never be normal: the wires holding my sternum together, the metal clips on blood vessels will always be there.
My life may be another two months or 40 years. I’ll always be able to taste the “chemo,” the metallic taste awakening my nausea. But those days immediately following chemotherapy are distant memories. The leukemia, through my genetic code, added its own helix to the turns of my life. The twists of the days I cannot find and recall, the solitary nights, the vomiting, the fear, all are a silent, gauzy part of me with which I still struggle. They’re another component of the price paid, one of the things no one mentions except at the time of diagnosis, when they state the obvious: “This will change your life…” Even if you win.
