Time on Fire: My Comedy of Terrors (20 page)

I wanted to leap out of the bed and tackle her.  I wanted to grab her by the neck and strangle her.  I wanted to say, “You fucking bitch.  How dare you?  How dare you wake this man up at five in the morning to give him news like that?  Five hours before any visitors are even allowed on the floor to see him.  And who do you think you’re talking to anyway?  That’s Willie Dingle over there.  Willie Dingle doesn’t even know what a ‘mass’ is.  He doesn’t know ‘extraordinary measures’ or ‘resuscitate,’ and he sure as fuck doesn’t know what ‘incapacitated’ means — even before you hypnotized him with the word.  And worse than any of that, who do you think you are telling him all that horrible gruesome shit right here in the room WHERE I HAVE TO LISTEN TO IT TOO?  You think I don’t have problems of my own I have to worry about?  You think I need to be here when Willie Dingle hears he hasn’t got a prayer left in this world, and that no one’s heard any of his prayers so far anyway?”  I wanted to kill this doctor for her stupidity, for her insensitivity, and for her complicity in the conspiracy that had trapped me there.  And I wanted to kill her for nothing more than being the messenger who had brought the bad news.

She smiled at me as she left the room and faded away down the hall.  I watched her go and didn’t say a word.  I learned that I had been wrong about my neighbor Willie, and about what he could and couldn’t understand.  As the first rays of light squeezed through the break in the curtains, in the silence of the aftermath of the attack, I lay still in my bed and I listened to Willie Dingle cry.

The next day I moved myself into a private room.  The cost was $150 a day above what my insurance would pay for.  I never asked about Willie Dingle again, and I did my best to avoid even going back down to that end of the floor.  Besides the arguable insanity of placing one patient preparing for a bone marrow transplant in a room with another patient suffering from all of the procedure’s worst complications, I just couldn’t bear to be around any more grief than my own life contained already.

There was also now a great urgency to the treatment schedule.  The only hope for survival from that moment on was to get the leukemia into remission once more, to recover from that battle, and then to have a bone marrow transplant as quickly as possible.  The leukemia once again proved to be highly susceptible to the chemotherapy and a second remission was soon achieved.  But then one night as I lay in the hospital counting the moments until I’d be well enough to move on to step two, and wondering how long this new remission might hold, I got a fever.  The fever rose that night to 106.5 degrees.  The fever came on with the force of a storm brewing inside my body.  A restlessness.  An energy that was trapped, that was looking for a path to blow, but that could only inhabit a tiny space and burn itself out.  I would just have to wait.  And wait I did.

For the next ninety days I had that fever.  It would explode at two in the morning, then level off for several hours.  Just before dawn, it would attack once more, only to drowse at mid-morning.  That’s when I would sleep, when the fever would let me.  With a fever of such strength, but no clear diagnosis, the treatment is minimal.  Tylenol is given every four hours.  And when the hot winds blew, when it seemed that the apocalypse had arrived and was launching it’s mad fury from within my very own flesh, on went the cooling blanket.

A cooling blanket isn’t really a blanket at all.  It’s a pad laid on the bed, underneath the sheet.  The pad is hooked up, by thick rubber tubes, to a large machine on wheels, which, when turned on – besides causing a holy racket of whooshing, grinding, screaming sounds – sends jets of ice-cold water through the pad on the bed.  This is done to try to lower the temperature of the patient, and causes, much like the Shake and Bake I’d come to know so well, violent shivering spasms alternating with crippling heat and sweats.

For two months I lay on that cooling blanket.   I was put through every test, every procedure that any specialist could have conceivably recommended:  magnetic resonance imaging; radioactive white blood cell scans; liver needle biopsy.  Some of these maneuvers were conducted using enormous, gleaming machinery.  Just as often, they were performed in dank, grimy cells below ground level, with sunlight struggling to penetrate the filthy windows near the ceiling of the room.  I saw the miracle of modern medicine revealed as what it truly is: an astonishing assortment of marvelous tools that serve only to practice a thorough process of elimination.  With this lineup of equipment, doctors are able to look for clues in one area of the body, and then continue to search in an achingly wide arc through the list of every possibility until they get a positive result.  In the most arduous endurance test imaginable I was probed, punctured, and drained.  Infused with gallium and barium.  Twisted, spun, wrung out, and plopped back into bed.  Every test was performed that was available, yet no diagnosis was found.  As the doctors began to speak about sending surgeons to see me — surgeons who could offer me various types of exploratory surgery, as a salesman might offer samples from a briefcase — all I was told was that “fifty percent of the time, fevers of unknown origin are not diagnosed until autopsy.”

In fact, this cold, detached casualness about my possible death had become the norm in the doctors’ behavior toward me.  While I had enjoyed a warm, if still somewhat formal, relationship with Dr. Melman, since my problems had become more serious I was detecting an undeniable change in her attitude.  The amusement that she had at one time gotten from my breadth of knowledge about my illness, as well as her exasperated admiration of my logical arguments for altering some of the hospital’s routines, had vanished.  Her daily visits changed into brusque, rote reports that she would conclude with a shrug of her shoulders.  Day after day she would stand at the foot of my bed and say, “I’m afraid we have nothing new to tell you, Evan.”

I can’t fault Jesselyn Melman for not having any more information for me.  But each day would bring a parade of several different doctors and nurses.  An intern would stop by, as would a resident.  Every shift change brought a new nurse, and, in addition to whatever specialists might be monitoring my progress, once a day I saw Dr. Melman, my attending physician.  Unvaryingly, the worse my condition became, the more curt and strained were their daily visits.  It was as if these professionals, and whatever warmth they might have once shown me, began receding in direct proportion to how poorly I was faring.

Perhaps as a result of their frustration at having to stand by my bedside and continually confess their ignorance over the cause of my problems, another tactic became common.  Some of the younger doctors took to bursting into my room with a bizarrely forced, cheerful demeanor, making pronouncements about what the next plan of attack was going to be.  Apparently these people, lower in the hospital hierarchy than they wanted to be, needed to feel that they had some news item for me, because I counted a six different occasions, over a seven-day period, when I was told by a staff member that “they’ve decided on surgery for you.”

I would explode when this happened, and the poor soul who had been presumptuous enough to utter the statement would gawk at me, puzzled by my anger.  “What the fuck do you mean?”  I’d snarl.  “Who’s decided on surgery for me, and since when does surgery get decided on
for
someone?  Am I wrong, or don’t I at least get a vote on the matter?”

“Oh, well, I don’t…of course you do.  I was just…it’s just what I’d heard.”

“Yes, well,” I’d snap back.  “Why don’t you leave those discussions to me and my attending physician?”

“Of course.  Of course.”

But no matter how I complained, this happened day after day.  I had agreed to have a surgeon examine me, and to listen to his recommendations.  But why were these interns and residents and nurses parading into my room with news about what the hospital had “decided” to do to me?  And what kind of staff did they have there, anyway?  Who could possibly think along the lines of doctors deciding what would be done to a patient without that patient’s prior knowledge or consent?

When I asked Dr. Melman what was going on she seemed perplexed as to what I was so upset about.  “Ignore them,” I was told.  But if a half-dozen hospital employees could, though mistaken, be certain that they knew what was in store for me how could I rest assured that one of them wouldn’t arrive before dawn, administer a sedative, and cart me away to the operating room?  And if there was such efficient communication among the staff that everyone could share the wrong information, why was it impossible to replace the rumor with facts?

About the only pleasure I allowed myself during those two months was having my friend Daniel come and sing to me in the hospital.  We had gotten to know each other about a year before, during my stay at Sundance Institute, and we had played around at writing a couple of songs together there.  What that really means is that Daniel indulged me by letting me contribute a few lyrics to one of his beautiful creations.

Daniel is a born musician, from an intensely musical family, who writes songs of simple, elegant, inspirational beauty.  Most are love songs, with a strong country/gospel feeling, and many invoke soaring images of faith and redemption.  We had become fairly good friends since spending part of the previous summer together, and dinners with Dan and his girlfriend, Barbara, and Jackie had become a common occurrence.  Daniel and I had begun planning a cross-country bicycle trip together, one that would take us from New York all the way back to Sundance, in Utah, for the next summer’s session.  I was taking particular pleasure from our girlfriends’ vested interest in the trip.  Apparently Dan’s girlfriend had been getting annoyed with his stunningly self-effacing manner and wished that someone would instill a bit of assertiveness in her sweet-natured man.  Jackie, on the other hand, had witnessed about all she could stand of my competitive, self-promotional personality, and it was clear that each of the females was openly coveting a little bit of the other woman’s man, and hoping we’d come back from the journey ever so slightly altered by our exposure to each other.  I suppose if we’d been thirty years or so older, some easygoing mate-swapping might have been the more sedentary solution.  But being the healthy young bucks that Dan and I were, we all hoped our bicycling two thousand miles together might do the trick.

It was the casting of
Broadway Bound
that caused the cancellation of our trip.  But we had stayed close and just a day or two after the new diagnosis, we all had dinner together.  We met on the Upper West Side of Manhattan at a restaurant specializing in steak.  I had decided to bulk up before I headed off down the road to Hell once more, and I remember gathering at the restaurant, showing them my Valium prescription, and working very hard to make heroic jokes about my plight.  In the middle of a sentence I was speaking, Daniel reached over, and in an act of intimacy that embarrassed me to the core of my being, put his hand over mine on the table top.

“I’m gonna go through it with you this time, buddy,”  he said.  “I’ll be with you the whole way.”

I nodded my head mutely and tried to blink back my tears.  Daniel and Barbara had heard me, many times, disparage the friends who had “abandoned” me during the first episode of my illness.  Friends who had faded away over the last two years, either immediately following the first diagnosis or somewhere else along the line.  Friends who’d sent a card or bouquet but who’d never shown their faces or called on the phone.  And I don’t mean to suggest that I craved the presence of people I wasn’t close to.  I refused dozens of visits from distant relatives or friends of my parents who thought nothing of arriving at the hospital unannounced with the deluded notion that I would be happy to see them.  An impromptu hospital visit to someone who is seriously ill is not, in my opinion, the way to demonstrate support for their family.  I’m speaking of friends whom I saw or spoke to on a weekly, or even daily, basis, and whom I never heard from again.

Daniel cut right through my stoic posturing and spoke precisely what I’d longed to hear.  That is something that takes an incredible amount of courage.  The only thing that takes more is to live up to the promise.  And live up to it he did.  For hours at a time, Daniel would sit on the bright orange, plastic-covered, institutional furniture of my hospital room.  I would lie in my bed, heavily sedated by pain medications, with several drugs and blood products at a time flowing into the catheter in my chest.  After the recurrence of the illness, Dr. Melman, being diplomatically uncritical of Zweig’s earlier decision, had agreed that it was time to implant a more permanent vein-access system.  In an operating room procedure, while I was under general anesthetic, a small rubber tube was inserted into one of the major veins in my neck until its end rested inside a chamber of my heart.  The other end was tunneled under my skin until it emerged a few inches to the right of my left nipple, where it branched off into two separate tubes, each capped with a rubber port for sticking needles into.  This device, while gruesome to look at at first, emerging from my flesh like some two-headed parasite, would save me from having any more needles stuck into me.  With scrupulous hygienic care this Broviac catheter could remain in place indefinitely.  There was, though, a constant risk of a serious infection infiltrating the equipment, and, if that were to occur, I was told, the catheter would quickly have to be removed.  I cared for mine as if it were a helpless creature, dependent on me for its life.  Whenever nurses administered drugs to me through it, I would chastise them if they didn’t clean the access ports adequately, and I would ask them to push their potions in slowly.  This method of delivery resulted in almost instant effectiveness of the drugs, and, as was common, if the drugs were pushed in too fast, they would cause intense chemical tastes to flood my mouth and throat, as well as an overwhelming sense of nausea.

Half-conscious, deeply depressed, and severely ill, I was not a pretty sight or a pleasant host.  Without the help of a major narcotic, Dilaudid,  administered every four hours, I was in agony as the result of a severely swollen liver – the only diagnostic clue we ever got as to the cause of my fevers.  Yet Daniel would quietly unpack his mandolin in the darkened room, sit himself down near the foot of the bed and begin to play.  Oftentimes Jackie would climb onto the bed next to me, and in the only exertion of energy I might make for the entire week, I would softly sing along with my friend Daniel as he played.  The mood in the room was hushed.  Reverential.  The degree of suffering being endured was granted an equal measure of respect.  Panting in the bed, with Daniel singing to me and Jackie stroking my burning head, I had arrived at the place where I had fought so hard to avoid falling.  I was a patient.  And there was nothing for me to do but live up to the label, to wait, and to accept whatever might come to pass.  For the first time, with no strength left to struggle, I understood where the term had come from, and what it was supposed to mean.