I was diagnosed with acute myelogenous leukemia (AML) on April 25, 2003, at age 44, and immediately hospitalized. After having a double–lumen Hickman catheter inserted into my superior vena cava vessel near the right atrium of my heart, chemotherapy, consisting of Ara-C and Idarubicin started the following Monday. I never before had a major medical problem or was ever hospitalized.
At that time, over the prior 2 weeks, I had accidentally pricked myself on rose thorns while on vacation with my wife in Pennsylvania, and strange rashes appeared on my knees and hands. A cold sore on my mouth refused to heal. One day, despite it being springtime, a heavy snow fell, which seemed oddly out of place. Looking back, it was an ominous sign. Upon returning home, I started feeling progressively weak, with low-grade fevers, night sweats, irritability, and bleeding gums. People at the mental health clinic where I work as a psychotherapist noticed I didn't look right. I was internally worried about what might be wrong, and felt febrile—it was difficult to listen attentively to my therapy patients. Upon visiting my primary care physician, the ensuing blood test revealed a “shockingly low” white cell count—I recall the fear and loss of control as she told me this on the phone, and soon after I gulped down the first dose of anti-anxiety medication she called in for me. The next day my wife and I consulted an oncologist/hematologist, who reassured us the low white count could be a virus, but my blood would require further study to ensure nothing more serious was brewing. The following day he called to say there were abnormal blast cells in my blood sample, and a bone marrow biopsy was needed. The ante had been raised, and now I was scared. Feeling somewhat panicky, I called my wife, canceled my patients, and met her at the oncologist's. I recall at the time feeling an anticipatory dread of bad news. I was glad my wife was there. She was worried too, but at the same time calming me down. Never before in this predicament, and a well-trained and seasoned clinician, there was I in an outpatient hospital gown having a bone marrow aspiration. Trying to make sense of it all, I realized I had to be brave. I had to stand up and face squarely what others were trying to figure out was wrong. This is what I counseled my patients to do. There was no other way. Deep in my core, however, I was feeling very out of control.
The next afternoon my wife and I, happily married for nearly 2 years, returned for the results and were informed the biopsy showed acute leukemia. The oncologist said the goal is cure, which today still rings in our ears. My wife exclaimed “Oh God.” I felt numb, and probably in shock. I asked if I was going to die. The doctor said I would need to go to the hospital and get treatment, and that I would be admitted—today. It would be about 1 month in the hospital. My wife and I hugged and cried. We called family with the news and eventually got ourselves together and walked to the hospital campus. I don't remember what we said to one another. I was wearing my black leather jacket, and somehow I had lost the self-confident feeling the jacket provided. I was admitted right to the cancer floor. There was immediacy to it all. My wife stayed the night and rushed home the next morning for some clothes, headlong, still in shock. Neither of us could believe what was happening.
This was the first of 10 hospitalizations. Illness was thrust upon me, upon us, with no grace, no pronouncement of context. When I looked around, I saw busy doctors, residents, nurses, milling around the nursing station, on the telephone, conferencing patients, writing notes, looking up articles or lab values on the computer; when I looked up at my I.V. pole I could not believe it was me receiving chemotherapy. “Cancer floor ... cancer floor ...” would repeat in my mind. As the chemotherapies invaded my cells during this induction phase of treatment, I got weaker and sicker for the first time in my life. Early on, while rising from a wheelchair for a chest X ray, I unexpectedly fainted, and as I did I realized “I'm really sick.” I became so weak I could hardly walk. My mood was cranky and irritable, and I tended to question and argue with the nurses and even alienated one trying to help me. I found it hard to be ill mainly because I was anxious about the remote possibility that I might not recover. I felt very angry and resentful about the world going on without me on warm summer days while I was stuck in the hospital. The chemo zapped my appetite and I lost 20 pounds. I spent 4 days in intensive care due to a serious colon infection and a dangerously low potassium level. However, as the weeks passed, my white count came on line again, and the chemotherapies put the leukemia in remission. I recall bursting into tears of relief when my oncologist told me I was going home. It felt like I had gone to battle on foggy seas, and now I was approaching shore. My wife and I were so happy and terribly relieved. Strangely, in the town car on the way home, we were both quiet. I suspect we were feeling anxious about leaving the hospital and what was to come.
Following this initial hospitalization I had three 1-week hospitalizations for further high dose Ara-C chemotherapy regimens as per the standard protocol. My sister and I beat formidable odds in being identical HLA (human leukocyte antigen) matches, making me a candidate for allogeneic stem-cell transplantation. My wife and I learned that research has found largely equivalent rates of sustained remission, and perhaps cure, using high dose Ara-C versus stem cell transplant in patients within certain age parameters. Given the equal odds, and that I had no chromosomal abnormalities, we chose chemotherapy. However, like with all chemotherapies, the Ara-C would cause my blood counts to drop to dangerously low levels, requiring four additional hospitalizations for weeks at a time until my counts would rise to safer levels. These were absolutely grueling experiences in which I sustained neutropenic fevers up to 105°, I was pumped with I.V. antibiotics to prevent infection(s), and at times would be shivering uncontrollably under many blankets. I have lost count of all the red blood cell and platelet transfusions I received. The days and weeks in the hospital were long and boring; Sundays, when my wife was resting at home, were for me interminable.
By November 2003 I had completed the consolidation phase of treatment. At first it was psychologically difficult to adjust to being in remission because I felt vulnerable and feared a relapse. It seemed that as long as I was receiving chemotherapy I was taking an active step against the cancer. My oncologist assured me that as time passed I would worry less about it, and that is exactly what happened. Monthly visits to my oncologist for blood count checks turned into seeing him every 2 and then every 3 months. I returned to work, and life returned to normal.
I remained in remission for about 32 months, during which I completed my Ph.D. and trained for and ran half-marathons. Earning my Ph.D. required a tremendous amount of learning and study with a brilliant psychologist, and with my new lease on life I found this exhilarating. As time passed I felt increasingly self-efficacious and proud of my achievements and my sustained remission. I had survived cancer and completed my doctorate. My oncologist (a marathoner himself and my inspiration) and I were fairly confident the AML would not return. I relapsed in late July 2006, several weeks on the heels of having presented my doctoral dissertation at a prestigious conference in Edinburgh, Scotland and a week of vacationing in London. My wife and I were now faced with me spending another month in the hospital, enduring the identical chemotherapy regimen to hopefully effect a second remission, eating the same take-out food on a hospital bed, and then on the heels of all this, a stem-cell transplant at a different facility. There is really no adequate way to explain the psychological effects of facing something like this. It is perhaps similar to Post Traumatic Stress Disorder, but not quite. It involved a sting of disappointment and resentment over having to relinquish life's simple pleasures—a jog on an early summer morning, sitting with my wife in a favorite restaurant, gardening, a sense of well-being—for confinement in a hospital room and life-saving medical care that has to nearly kill me first before making me better. The only choice was to return to the hospital—there was simply no other way.
And return to the hospital we did. My room was ready with my name on it. Everything and everyone there looked pretty much the same as in 2003. I found it difficult to exchange the staffs' kind smiles and greetings when I was feeling so angry and resentful about having to return to the hospital. Time moved very slowly. I preferred to see it rainy outside. From my window I watched people jogging. After the chemotherapies I felt that overwhelming fatigue again, accompanied by neutropenic fevers. I was pumped up with several powerful I.V. antibiotics. I became depressed and anxious, feeling very confined, and developed an insatiable impatience for my blood counts to elevate so I could go home. The thought of the stem-cell transplant loomed in the near future—I tried not to think about it because at that time it represented more confinement. I lost the month of August. Fortunately, I gained a second remission.
During these numerous hospitalizations, my wife was always allowed to sleep in my room on an uncomfortable, rickety cot. My illness drew us even closer, and we strove to be together as much as possible. Her presence, her embraces, her reassurances calmed me down and buffered me from my mind's whispers that I had cancer. Whenever I would yearn for home, my wife would say “soon, very soon.” She would rub my back for long stretches of time. No matter how much I talked with my psychiatrist about the psychological weight of relapsing, it would all spill out in tears of diffuse feelings while hugging my wife in the early evenings. This was especially true upon relapsing, and looking back I now recognize how vulnerable I was feeling. Cancer's reoccurrence and my reconfinement in the hospital stirred up many feelings of anger, abandonment, and guilt, stemming from childhood separation and attachment issues. Despite many years of addressing these areas in a personal psychoanalysis and psychotherapy, as is de rigueur in my profession, I was only dimly aware of their continued presence and influence.
After achieving a second induction, I rested at home for a 2-month period, which included meeting my new oncology team and preparing for the transplant. I tried, mostly unsuccessfully, to refrain from reading about stem-cell transplant statistics on the Internet. During this period I would experience bouts of anxiety about what I was facing, fearing a virulent infection, like Aspergiliosis, or severe graft versus host disease, or death. I was hungry for reassurance from my new team of doctors. In an attempt to psychologically prepare for the transplant, I began working with a consultation-liaison psychiatrist who would also follow me in the hospital. We agreed that I was suffering from an adjustment disorder with depression and anxiety due to the relapse and upcoming transplant. We decided to start me on Lexapro (I was already taking Ativan) with the goal of stabilizing my anxiety and tearfulness pretransplant. Interestingly, despite the use of antidepressant and anti-anxiety medications, what ultimately proved most psychologically helpful was a brief psychoanalytic treatment during the transplant hospitalization itself. Seeking psychological assistance pretransplant turned out to be a sound move, which I will elaborate upon below.
As my admission day arrived, my wife and I took deep breaths and once again entered the hospital. My new temporary home became a very small room within a four-bed transplant unit in which each room contained a special laminated air filter to prevent hospital-borne infections. The nurses were highly skilled, friendly, and dedicated, immediately milling around my I.V. pole, giving me instructions and suggestions. It was a lot to take in. Additional infection precautions were strict from the beginning: My wife and others had to wash their hands and wear gloves and masks whenever they entered my room. My wife was not allowed to sleep there. I was not allowed to eat take-out food, only cooked food from home, processed foods (i.e., jelly, canned tuna), or hospital food. I was expected to apply prophylaxis antifungal ointments to my armpits, groin, and anal areas and rinse with two special mouthwashes four times a day. Saline hydration started immediately. Every bodily fluid was bagged and analyzed. There was no bathroom in the room—each and every morning I was given two tall bottles of heated saline solution and mild soap which I poured into a small basin. In my slightly chilly room with the curtains drawn I would stand naked on two towels and wash my body head to toe. Toileting involved a commode and urine bottle. The day after I was admitted I started a full myeloablative conditioning regimen involving Cytoxin and Bisulfan to clear out my bone marrow to receive my sister's stem cells.
Unfortunately, I completely underestimated the physical and emotional isolation of the transplant. I was used to having my wife sleep in my room, and I sorely missed her presence at night. By Friday of the first week I was feeling increasingly anxious and claustrophobic in my small room in anticipation of the stem-cell transplant scheduled for the following Tuesday. My worst fear was of having some type of reaction to my sister's cells and dying. I was reassured over and over by the nurses that all would go well. However, the inner tension and nervous anticipation mounted over the weekend. I tried very hard, like with the first bone marrow biopsy, to be brave. My wife was present on what is considered Day 0—the day of the transplant. She held my hand as my sister's stem cells infused into me through my catheter. I was scared, and became tearful, looking at my wife. She said, referring to the transplant, “It's a good thing.” I nodded, thinking to myself ‘Yes indeed, it is a good thing.’ I looked up at the bulbous red bag of my sister's stem cells hanging on the I.V. pole, and felt fortunate, realizing this is a momentous occasion which may save my life. Now began the wait for engraftment.
During this waiting period the strict physical and emotional isolation of remaining in my small room became overwhelming. I became sadder, weepy, and clingy during my wife's visits, and when she would leave for the evening or head for home on early Sunday afternoons, I'd feel abandoned and resentful of her because she wouldn't stay longer and that she was well and I wasn't. While I was able to recognize and verbalize my feelings, they seemed impossible to modulate. As these feelings became more pronounced, my Psychiatrist and I began having three to four sessions a week in my small transplant room, exploring why I was crying so much. What was it that I was feeling? Was it related to the transplant itself or other things? Why was I so sad and resentful about my wife not being with me all the time, despite intellectually understanding that our marriage was solid and that it was important she take care of herself by resting at home, seeing her family, and refueling? I recognized something painful I already knew, but which was not in my conscious thoughts: My loneliness, my weepiness, the feelings of abandonment and resentment, all drew their roots from an earlier template of feeling abandoned and unworthy as a young child due to attachment problems with an anxious and depressed mother.
As I reflected more into myself I was reminded of something that as a psychoanalyst I knew only too well: that an anxious mother begets an anxious child. I recalled the texture and fabric of a clingy, insecure bond with my mother during my developmental years. My father, an electrical engineer, was very concrete in his thinking and rigid in his approach to parenting. Sadly, my feelings during childhood were rarely understood for what they meaningfully represented because so much of my experiences were filtered through my mother's anxious and irritable moods; additionally, my mother exhibited a subtle belittling competitiveness toward me. During these formative years, feelings of insecurity plagued me, and I developed difficulties separating from mother to attend school, day camp, or sleep-away camp, and then, as I grew older, anxiety and lowered self-esteem caused me to have difficulties dealing with competition and romantic and peer relationships. As an adult I worked through many of these issues in prior psychotherapeutic treatments, but I came to realize there was still a deeper resonance of these anxieties within me that were being expressed.
This legacy of anxious attachments pervaded my hospitalizations up through the transplant experience, at which time attempts to understand my feelings and reactions served to contain and interrupt what was repeatedly being enacted. As a result of this psychoanalytic exploration, I subsequently became much more self-aware of these earlier attachment issues and how separations, mainly with my wife on the unit, tended to trigger self-blame and anger, which, under the present circumstances, essentially short-circuited my recognition of the secure marriage with my wife and secure relationship with myself. These insecure, self-blaming, weepy feelings lessened their hold on me, and I recognized that while they are my feelings, I could still behave differently. While I would still feel a twinge of tearfulness upon kissing my wife goodbye, I no longer blamed myself, and that familiar crummy envious feeling eased up. I started to feel better about myself in my small confined room, whether my wife was there or not. My mood improved, and I would like to think it eased the strain on my immune system. This psychological work helped me immeasurably throughout the remainder of the transplant hospitalization. My blood counts started coming up on day 13 posttransplant, and I went home on day 15, the day before Thanksgiving. As of this writing I am home, resting, in the process of recovery, with a 93% chimerism of my sister's stem cells. I will be returning to work very soon.
In conclusion, my stem-cell transplant experience caused me to have a psychological regression in which I encountered earlier origin emotional vulnerabilities and unresolved attachment issues that masqueraded as weepy emotional states during prior hospitalizations. Despite many years of psychoanalysis and psychotherapy that addressed these issues, this recent psychotherapeutic experience distinguished itself as being more emotionally powerful than prior treatments. The isolation and confinement the transplant procedure demanded provided a context and container for long-standing emotional enactments to be psychologically investigated and recognized as an integral part of me, which were then further analyzed, clarified, and ultimately relinquished as I felt I could step into a safer and stronger sense of self. While I could have increased the dose of the antidepressant and/or anti-anxiety medications, there was much more I gained by re-remembering and re-working through.
