Time on Fire: My Comedy of Terrors (24 page)

The assurance in his declaration helped me to feel very hopeful, and scared me out of my wits.  I was terrified of becoming one of the people whose marrow never “came back,” a dire situation that cannot be discovered until some weeks after the transplant occurs, when signs of regeneration are expected.  I was afraid to ask, but I wanted to know if they had taken out enough for a backup dose – an adequate amount of marrow left untreated and held in reserve, in case the purged marrow fails to graft properly.  This is obviously a measure of last resort, which  offers little chance of long-term survival.  The patient will have endured the risks and horrors of bone marrow transplantation only to wind up with the same marrow he started out with.  But I was aware of one case in which a patient had to be given his emergency backup dose, only to recover and never fall ill again.  The most likely explanation is that he was – of course, unknowingly – one of those few individuals who would have remained in a state of perpetual remission (another oxymoron) without any transplant at all.  If you are getting the impression of a miraculous procedure defined by guesswork and imprecision, that was just the climate in the land of bone marrow transplantation in 1988.

Once I’d mustered the courage to pose the question, I was almost sorry I had.  “Oh, we got a little left over,” Dr. Barton announced.  “Not very much though.  We’ll worry about that if we get there.”

Sliced oranges had already been placed in dishes around the room.  This was not to ward off or attract various godlike spirits, as it might have appeared to anyone stumbling upon the scene.  The marrow infusion causes a ghastly sour garlic smell to emanate from the recipient for about a week after it’s given.  In the days before my transplant, we had walked the halls of the floor with perfect knowledge of whose had happened most recently and whose was some weeks behind.  The smell billowed forth from the rooms like smoke pouring out of a burning building.

Jackie had already said good-bye and left my room.  In anticipation of the horrible stench we’d sampled in the hallway, she’d given me one of our “noncontact” hugs which were necessitated by my nonexistent immune system – both of us would spread our arms wide as if to embrace, leaving a space of two feet between us – and she’d fled the scene.  Every now and then over the afternoon she would poke her head into the room, peeking at my parents and me, holding part of her shirt over her nose to filter the odor.  She’d giggle self-consciously, wrinkling her nose up into an adorable attempt at a scowl and say, “I’m not coming near
you
for a few days!”

After I had been shot up with my GVHD-preventing cortisone, electrodes were run from various points on my body to a portable heart monitor.  Since the infusion of marrow requires a large amount of viscous fluid to be pushed into the bloodstream, there is some concern about cardiac function.  In other words, a heart attack is possible.  If I was forewarned about this danger I had no memory of it, so by the time the nurse arrived to actually begin administering the marrow I was in a state of high anxiety.  The pomp and circumstance of what came next didn’t alleviate it any.

As the nurse first unwrapped and then handed the doctor a large cylinder containing what looked like deep maroon sludge, I was somewhat baffled as to the solemnity being granted to the day’s event.  As I watched the doctor click the tubing through which the marrow would travel onto the first cylinder, I slowly began to understand the caution being exercised and the terminology I’d mocked thus far.  The drugs had already been administered.  Regardless of whether or not that marrow made it into my body, my blood cells were dying and there was no saving them now.  As the nurse made her way down the hallway toward my room, as she held on to the cylinder until she was sure of the doctor’s grip, she knew what she had possession of and the implications of what she was doing.  I was in the same boat as the blood cells still alive in my body.  I was a doomed man, and that was my rescue dose.

There were seven cylinders of marrow to be infused, and the contents of each one had to be pushed into my Broviac catheter slowly — over the course of twenty minutes apiece.  It took me a bit longer to figure out the next part of the puzzle.  Only after the first cylinder was empty of its contents did the doctor call the nurse back.  And not until she took the empty cylinder from the room did she go to the refrigerator and remove the next one.  If there were seven cylinders of marrow, I wondered, why had the nurse brought only one and gone away?

And then it dawned on me.  If she took seven cylinders out of the refrigerator and tripped on her way down the hall, my life would be a gooey mess mixed with broken glass lying on the floor of the hospital.  A maintenance worker in a green uniform would arrive with a broom and mop, and my life would be scraped up and cleaned off the floor, my only legacy a small island of linoleum left slightly brighter and shinier than the area surrounding it.  Suddenly, the comical aspect of the event vanished and I was watching every movement the doctor and the nurse made.  I studied her footsteps and projected her trajectory, ready to call out if there was anything blocking her path.  I made sure the doctor squeezed every last droplet from the cylinders, refusing to relinquish my rights to as many cells as had been taken from me ten days before.  For the rest of that afternoon this was the ballet that was danced on the third floor of a building in the town of Baltimore, Maryland.  A woman wrapped my life in white swaddling cloths and, as if she were saving seven baby Moses from the banks of the Nile, she delivered them to another man who gave my life back to me via a thin rubber tube.  That’s what is called a rescue dose.  That is how a man is rescued, and that is how they rescued me.

On the fourteenth day after receiving my rescue dose of bone marrow, Dr. Andy Yeager waddled into my room.  Dr. Yeager was a wonderfully odd little man.  He was short, with a body like one of those Weeble toys that won’t fall down.  Dr. Yeager always dressed with a bow tie, and he seemed pretty thrilled with his work as well as his position in the general scheme of things.  He spoke precisely, with great enthusiasm and warmth, but with the type of sincerity so rare that it provokes the slightest sense of suspicion – a bit like children’s beloved Mr. Rogers on television.  On this day Dr. Yeager seemed even more thrilled than usual.

“Hey, well, we’re just, we’re just tickled to death over your marrow, Mr. Handler.  Looks good.  Looks really,
really
good.  Why, I might even go so far as to say, in an especially cavalier moment, that your marrow looks, well, positively excellent.”

Andy Yeager had probably just added a good ten days to my ability to endure anything dangerous that might still come along.

Then he said, “Would you like to see it?”

“Wha…wha…what do you mean?  Would I like to see what?”

“Your marrow!  There’s not a whole lot to see, we don’t expect to see much on day fourteen.  But I think I can show you — well, I’m quite sure that I can show you — some very beautiful red cell precursors; some very beautiful, very clear granulocytes in various stages of development; why, it’s probably too much to hope for, but I could swear I even saw a megakaryocyte or two in there.”

This had been my wish all along.  To be included in all aspects of my medical care.  To be included, so that, if I had to go through all this, it would at least be my journey and not just some ride that I was taken on, blindfolded, like a hostage.  Now that the opportunity was being offered, I found myself paralyzed with fear.  For the first time, I had an inkling of why so many people don’t want the doctor to share too much with them.  The reasoning goes like this:
As long as there is someone who knows more than I do, there is someone who must be more powerful than I am.  If I give the doctor more power than I have, then the doctor will really have more power than I do.  If I know everything that my doctor knows, and I don’t know if I’ll get well — then my doctor must not know either
.

I got up and followed Andy Yeager down the hall.  I walked in a trance, like a medical student climbing the stage to claim his diploma, suddenly realizing that he is no more qualified today than he was the day before.  Andy Yeager sat me down in a squeaky, wooden chair in a cramped, little room, and I peeked timidly into a microscope at the cells that had been taken from my body.  He talked on and on about the slides he was showing me.  At one point I glanced up and saw that his face was beaming with pride.  When he caught my eye, though, his look hardened.  He gave me a long, cold stare and, finally, gloomily, he said, “Well…”

Andy Yeager glared at me as if he was about to impart dreadful news.  Just as my grin began to fade into a plea for mercy, his eyes brightened and a smile exploded across his face.  “What’s your opinion?  Doctor!”

I buried my face back in the microscope.  I pretended to be riveted by what I was pretending to see, as I hid from him my tears.  Tears of joy, cried over the doctor who let me be one of them.

The most brilliant illustration, though, of inspirational psychology at Johns Hopkins Hospital, in my opinion, was something called the “Evening of Elegance.”  I was told, upon my arrival, that each patient who makes it through to being discharged one or two months later, is entitled to an Evening of Elegance of his or her own design.  This most often consisted of a waiter in tuxedo arriving at the hospital with a cart to serve a gourmet dinner of, say, filet mignon, fine wine, and something described as a “parfait sundae dessert.”

It sounds nuts, but, oh, how that challenge takes hold.  It’s a fascinating psychological ploy.  Maybe not for everyone, but it sure worked with me.  I was not about to get cheated out of my free, hospital-supplied, gourmet dinner.  For the next six weeks, through fevers and blisters, through emergency trips down to the monstrous machines in the bowels of the hospital, with mouth sores so severe that I couldn’t swallow my own spit, I screamed in delirium at nurses and doctors, at my parents, at God and the devil himself:  “FUCK you!  I’m not going anywhere until I get my Evening of Elegance.  I’m not going anywhere until I get my fucking filet mignon and my GODDAMNED PARFAIT SUNDAE!!!!”

When, at last, my Evening of Elegance arrived, Jackie and I were almost as eager for the dinner as for my release scheduled for the next day.  The admission for the transplant had been relatively easy, lasting only six weeks — close to the minimum.  Most of that time had been spent, to borrow an image used by airline pilots to describe their work, enduring periods of savage boredom, punctuated by moments of extreme terror.  There had been a recurrence of the intense pain emanating from the area of my liver.  Since this can be indicative of VOD, or, venal occlusive disease, a treacherous and often deadly transplant complication in which blood supply to this vital organ is cut off, the entire floor staff flew into action.  With my father helping to push the gurney, I was again rushed down to the hell-pits of the hospital to be scanned and, ultimately, reassured that I was not in the throes of my final campaign.  There had been various fevers and painful infections and inflammations.  But, until the night when I was scheduled to enjoy my catered party, none of the problems had proven to be as dangerous as we all knew they might have been.  Most of my time was spent trying to amuse myself, sleeping for hours each day, and waiting for the weeks to pass.  Then, as we watched for the arrival of our congratulatory feast, I started to feel a slight chill.  As I wrapped myself in an extra blanket, the slight chill turned into a steady shiver.  No longer harboring any doubt that I was heading down another dangerous road, I began to sweat, my teeth started to chatter like an industrial sewing machine, and my temperature shot up to 105 degrees.  Clinging tenuously to the hope that I might still be able to have some sort of party that night and be released from the hospital the next day, I only realized after the dark red splotches began appearing all over my body and the subsequent response of the doctors who rushed into my room that after all the close calls and false alarms, I was in the midst of the real thing.  This fire was worthy of five alarms, and I had finally stumbled upon one of the real killers I’d heard so much about.

One of the most common assassins of leukemia patients in the weeks following a bone marrow transplant is a fungal infection.  The most common of these is Candida.  A yeast.  Jackie and I used to be endlessly amused that one of the most likely causes of my death would turn out to be the same organism that caused her vaginal infections.  But, as all the lifelike color drained from my flesh, leaving only a gray pallor surrounding the now brown splotches; as the doctors pronounced my system to have “gone septic” with Candida Krusei, there was nothing funny anymore about this tiny, deadly, fermenting agent that was running wild in my bloodstream.  I was put back on the Shake and Bake I had become so familiar with, I curled into a fetal ball, and I didn’t speak for the next three days.

Jackie described my reaction as if I had “retreated” into myself.  As if every function that was not essential to the sustaining of life was shut down.  She claims that I did, in fact, speak a few words to her  over those next days but that mostly I lay very still, sleeping.  Every now and then, she has told me, I would let out a sigh, or a slight, hushed whimper.  Her parents came to Baltimore, and my girlfriend, my doctors, and two sets of parents held a vigil, waiting to see if the young man in the bed might pull through.

My only memory is of that first night – my Evening of Elegance – of turning my head on the pillow, too weak to even pick it up, and seeing Jackie.  She was sitting at a portable dinner table, the kind with a hollow storage cabinet underneath, like those brought to a hotel room with a room service order.  The hulking box was covered with a crisp white tablecloth, and there was a centerpiece of freshly cut flowers.  I remember seeing her cutting her steak into pieces, and feeding those pieces into her mouth.  She ate the meat and potatoes and dessert, chewing  deliberately, squeezing the flavor out of each and every mouthful.  When she had finished with her dinner, she reached across the table, and she started in on mine.