Time on Fire: My Comedy of Terrors (28 page)

It was not uncommon for me, sometimes three or four times a night, to call Jackie at home for some comfort.  If I was scared, or if a fever had cropped up, Jackie was the one I would call.  No one else had the level of understanding she did or the degree of compassion that she had been able to show.  But, as of recently, Jackie had begun to sound annoyed.  She exhibited much less patience for indulging my fears, and I started to get the impression that my calls home from the hospital were being received reluctantly, as if they were an intrusion on the limited amount of time that she had to elude me and my burdensome predicament.  My comprehension of this dynamic was vague, however.  It only crystallized in my consciousness when the trend was reversed, at least temporarily, by Lanford Bimberg’s proclamation.

“Well, there are no leukemic cells in there,” he said, as he burst through the door.  That was Dr. Bimberg’s style.  He blasted into a room spewing forth information, and then stopped himself short, seemingly surprised by whom he’d found inside.

“Oh,” he’d say, as if correcting himself, steadying his course.  “Hello.  Hello.”  And then he’d gallop on.

“No, no leukemic cells,” he said.  “But then again it’s just as bad.  There’s nothing there at all.  Just empty marrow.”

“What does that mean?”  I asked.

“Just what it sounds like,” I was told.  “You’ve got no counts ’cause there’s nothing there.  Just fat cells.  And there’s nothing else we can do for you.  We can’t take you off the antibiotics because the infection will come back.  We can’t d.c. the acyclovir because the zoster lesions aren’t crusted over yet.  So you haven’t got leukemia.  I mean, that’s the good news.  But this is really just as bad.”

I was speechless.  His manner was definitive, extremely energetic.  Almost upbeat.  It seemed to bear no relation to the information he was imparting.  I couldn’t think of anything else to ask him, and it seemed he had nothing more planned to say.  So he said good-bye.

“Just try to relax, have a good weekend, and we’ll check in on you Monday,” was what I heard.

It had been some time since I’d gotten the rush of love that comes with a death sentence.  This time the emotion hit me more intensely than ever before.  I felt like a man who was drowning within sight of shore.  I could see each of my dearly beloved friends and family members, but no matter how loudly I screamed, they all continued to laugh and play on the beach.  There would be my wife, I imagined.  There are my parents and my child.  I could just give up, I thought.  I could just slip under the water and disappear, and no one would know I had gone.  They would never know that I had even been here.

Dr. Bimberg left the room, and Jackie and I sat by ourselves and we cried.  We held each other for hours, unable to comprehend what we’d just been told.  I knew that a recurrence of leukemia would have meant certain death for me at that point.  Hadn’t he said this was just as bad?  And was that how my life would end, I wondered?  With a too loud, too large man telling me there was nothing more that they could do?  I hung on to Jackie like I was hanging on to life itself.  Not because she could save it for me or change it for me.  But because she might be my last taste of it.  For the first time in quite a while, she clutched me back.  It was the return of the intensity of her emotion that made me first realize that it had gone away.  And the only reason I could have it now was because, according to Fred Flintstone, I would soon have to relinquish it forever.

As one of his very wise suggestions, my therapist Yehuda Nir told me that I ought to call the folks at Johns Hopkins.  “They are the ones who most recently treated you,” he indicated.  “Give them a call and see what they have to say.”  I put in a call, and within an hour, one of the attending physicians had phoned me back.

I told the story of my most recent admission.  I described the plummeting blood counts, and the empty bone marrow aspirate.  I told the doctor from Baltimore, with as much composure as I could muster, about Dr. Bimberg’s assessment that there was “nothing else we can do.”

In very calm tones and with reassuring language I was told that what was happening to me was to be expected.  “Your blood counts have dropped because of the medications you are on,” the doctor said.  “We have seen this happen many times.  When you are removed from the drugs, your counts will come back up.  It may take a long time.  But we have never seen a graft that has taken go away.”

And after the reassurance came the encouragement.  “You hang in there.  This might take a while.  But don’t give up now.”

On Monday Dr. Bimberg arrived in my room with a team of doctors visiting from Israel.  I asked if I could speak to him privately for a few minutes.  When we were alone I told him about my conversation with the doctor at Johns Hopkins.  I told him I thought he had done a reckless thing by leaving me with his callous declaration on a Friday evening, with no way to contact him for further information until the beginning of the next week.  I told him that he had made me believe that my life was over, and that it seemed, now, that not all doctors would have made that same determination.

Dr. Bimberg offered an apology — of sorts.  “If they’ve never seen a patient lose a graft, I’m happy for them,” he said.  “But I don’t see how they can tell you what’s going on from two hundred miles away.  I’m the one who’s looking through the microscope, and I just told you what I saw.  Hey, I didn’t know you’d be so concerned.  I wasn’t concerned.  If I upset you, I’m sorry.”

My blood counts, as soon as the medications were discontinued, rose steadily and rapidly.  The moment I was well enough to leave the hospital I called the doctors at Johns Hopkins again, and I begged them to let me return and complete my outpatient care there.  I tried to communicate to them the savage indifference I was encountering in and around New York.  There seemed to be an insistence at Sloan-Kettering, I told them, on the validity of a series of equations that held that, if an individual’s needs exceed what the institution can comfortably provide, then that individual’s needs must therefore be excessive; that whatever level of care the institution is capable of must be adequate, and, therefore, if that care is not good enough, then the patient is unsalvagable.  The medical professionals I was dealing with seemed overly inured to the premature deaths of young people, I said, and I was afraid for my well being in such an atmosphere.  After struggling so long to preserve my life I was loath to watch it float out of my grasp while surrounded by people who figured my death was to be expected anyway.

I was told that it was their experience that both the Westchester County Medical Center and Sloan-Kettering provided capable care, and my request was refused.  I couldn’t really fault them for denying me access; I understood Johns Hopkins’s need to preserve the conditions that allowed its staff to give me such fine care for a time.  But it troubled me deeply that they felt the need to cast aspersions on my observations, my experiences, in New York.  I had, and I still have, no hidden motive for denigrating any particular facility.  But I did think it was important, in the interest of sparing others the dangers I’d faced, that there be a climate in which criticism could be freely expressed, and, when it was, that the criticism be seriously considered.  The pressure to improve, I reasoned, could only come from peer institutions, and from their willingness or refusal to refer cases.  That way there would be no doubt as to whose care is truly “adequate,” because there would be no business for those whose care is not.

Life and love back at home didn’t quite live up to the overwhelming flood of intimacy that had followed the most recent pronouncement of doom.  The aftermath of a postponed execution is, I imagine, closely related to the mortification felt by passengers after riding in a plane that almost crashes.  I don’t know if the reports I’ve heard are true; of terrified passengers reverting to beastly yelps and howls in the face of imminent death.  But I can imagine a planeload of traumatized travelers, heading into the safety of the terminal after their near miss, all timorously avoiding the eyes of the strangers who witnessed their regression.  Most fearsome, I suspect, would be facing up to one’s own, familiar companion, who may have heard and may remember all the frantic yearnings and confessions hurled toward them in the moments of panic.  I am familiar with the emotional retreat that can follow an episode of revealing too much; of promising more than can be delivered; of pledging a love too large.  When Jackie and I found ourselves spared the brutality of a separation imposed by premature death, what we discovered in its stead was the shame of realizing we meant many of the things we’d said only within a context in which they were inherently impossible.  The embarrassment suffered privately then fermented into a resentment of the person whose presence aroused it.  And the prospect of living happily ever after was not enhanced, but made to seem ludicrous.

The toll that the last three and a half years had taken became clearer as I tried to shed them and to reconnect with people who had moved on with their lives while mine had been standing still.  While my gratitude toward many of the people who had helped me was profound, that was something that I’d had the chance to communicate, in person, on many occasions.  After being discharged, though, I eventually began to spend time with some old friends who had sent a card almost four years ago but who hadn’t been heard from since.  Or, friends who had been among the most devoted for a while and who had sort of slipped off the train along the way.

I had a lot of anger toward those people.  I felt abandoned.  Eventually, I became worried that I had scared everyone away.  Although not nearly as acute as they had been for the previous few years, some medical problems persisted, troubling me at least as much psychologically as they did physically.  When I would see or speak with friends, these were the issues on my mind, and I’d give long, detailed descriptions of my symptoms and complain bitterly about my frustration that recovery was taking so long.  It was clear that everyone had a limit, a point at which they, too, would jump ship to save themselves.  So far, Jackie had been the only person in whom I had so rarely seen the signs of imminent retreat.  When I began to recognize the distant numbness that I’d seen in others creeping into her eyes, I finally fell apart myself.

How could I endure any more losses? I thought.  My life was still held together by nothing more than my own refusal to surrender it.  I was still months from being able to resume anything close to a normal life.  I had been warned about some of the bodily functions that would be driven haywire from the ferocious barrage of chemicals that had been run through me, and I was learning to cope with them.  The most annoying was also the most common after the treatment protocol I’d received.  My sweat glands were temporarily disabled, and for some months, until they switched back on, any exertion resulted in an uncomfortable stinging sensation all over my body.  Like a million tiny needles pricking my skin simultaneously.  If I wanted to do any exercise I had to be vigilant about regularly wetting myself down with cool water, so as not to overheat my engine and wind up causing damage to the vital parts inside.

In addition to all the more serious repercussions, there was another disturbing problem.  My hair hadn’t grown back.  After each round of chemotherapy prior to the transplant, watching my hair repopulate my head had been an enormous symbol of recovery.  Even if I wasn’t feeling very well, once the hair had returned, I at least
looked
normal again.  As long as I kept my mouth shut about my situation, no one would know that I was any different from them.  But since returning from Baltimore, the only action happening up top was that a few wispy colorless hairs grew between the ones that had never fallen out.  These continued to get longer and longer until I sported a windswept terrain of patchy, downlike fuzz.  If anyone had felt uncomfortable facing me and my illness before, now, without a head of real hair to conceal the evidence of where I’d been, there was no hope of alleviating their anxiety.  With Jackie fading away from me emotionally, the question became, What will happen when the strain becomes so great that anyone who can escape must, and will, leaving only me?  Trapped, with no way to ease the relentless pressure of the past or to avoid the horrendous uncertainty of the future.  Not at all.  Not for one second.

All of my planned or projected medical treatments had been completed, except for one.  The protocol from Johns Hopkins for posttransplant care called for a series of spinal injections, to be given as soon as a safe level of platelets had been attained.  These injections, of a chemotherapy agent called methotrexate, were to guard against the proliferation of any leukemia cells that might have crossed the cerebellum/blood barrier and taken up residence in the brain or in the cerebral-spinal fluid.  If it sounds horrible, it is.

Since the administration of the drug required a spinal tap, which until this point had only been the title of a movie I had wanted to see, the procedure required that my platelet level be adequate to avoid any hemorrhaging.  But, since my platelet count had never fully rebounded after the transplant, this aspect of the treatment had been long delayed.  The likelihood of abnormal cells in my brain was extremely low, it was reasoned; my platelets were sufficient for most activities and might never go any higher.  Go about your business, I was told, and we will reassess the situation if ever your platelets come back up.  Although it happened with so little fanfare that it was difficult to comprehend, the time had come to begin living the rest of my life.

I had been in touch, intermittently, with my agents for some time already.  I had been turning down audition appointments for months, preferring to hold off on my professional reemergence until I was absolutely sure of my durability.  But now that the treatments had been deemed complete, or maybe because The New York Shakespeare Festival’s Public Theater was only two blocks from my apartment, I agreed to audition for a production of Shakespeare’s
The Winter’s Tale
.  The hair issue probably also had something to do with it.  Most of the calls from my agent had been for films that had roles for college students.  This was the height of the “Brat Pack” days, when it seemed that every American film was about people under the age of twenty-five. 
TAPS
, the movie I had done with Sean Penn, Tim Hutton, and Tom Cruise a few years before the illness, had been one of the first of this era.  As every newspaper and magazine published stories about the hottest young actors, I was asked repeatedly by one friend, who knew the story of the last three years of my life and still gave no indication that he was being anything other than sincerely curious, “Why aren’t you in the Brat Pack, Evan?”