Time on Fire: My Comedy of Terrors (23 page)

From the moment that I checked into Johns Hopkins until the moment that I left; from the men and women who cleaned my room each day to the man who had helped to invent bone marrow transplantation, I got the impression that nothing was more important than my getting well.  This was a teaching hospital itself, and it was a research institution — two factors commonlyassociated with the kind of gruff  medical care that had offended me in New York.  As such, the success of its studies determined its status, and so its financial future.  But at Johns Hopkins they seemed to have succeeded in understanding, and in communicating to the entire staff, that the way to get those good results was to treat each patient as an invaluable resource.  That by helping each individual to
live
through the procedures, rather than put their lives on hold for the duration; and by encouraging and investing in each patient’s recovery, they were enhancing their own results, and so their status in the medical community.

At Johns Hopkins all patients are encouraged — encouraged, cajoled, prodded, and pried out of bed — to walk twenty laps around the floor each day.  One mile.  I didn’t succeed at it completely, but there weren’t many days that I got away with staying in bed all day.  It’s not that it was so pleasant in the room, but going out in the hall required certain precautions and preparations.  In my own room it was the visitors who had to gown up and wear surgical masks, but for me to leave, it was necessary to put on my own surgical mask and to thoroughly wash my hands upon returning.  It sounds simple, but when connected to a rolling metal pole with thirty pounds of liquid and machinery, it gets tiring.

And, oh, at Johns Hopkins they had
great
IV poles!  It was like they were ordered from a totally different section of the catalogue.  These were sleek poles, with solid construction, that rolled and spun, and responded to commands like a fine automobile.  At Sloan-Kettering it had been nearly impossible to find an IV pole that had all its wheels working.  These were the poles that patients were attached to for twenty-four hours a day, for four or more weeks at a time.  And they didn’t roll.  So what they quickly became were shackles and leg irons.  Any movement became an arduous task, and sitting still became far preferable to walking around.  At Johns Hopkins, I decorated mine, with ribbons, and a six-inch Superman doll impaled on top.  As I would spin around the circular track of the floor, my arm draped lovingly around my IV pole, Superman’s cape would float behind us in the breeze.  They rolled so well, those poles, that I wanted to organize IV races up and down the hallways.

And they had
computerized monitors
.  For every fluid that I had running into me, I had a big, square computer box fastened to the pole that could be programmed to deliver the precise dosage, with an alarm that would ring if it stopped flowing.  It may seem odd to get so excited about this, but all I had seen for dose regulation before were ineffective plastic clamps — chosen, I assume, for their inexpensiveness.  They worked, clumsily, by simply squeezing the plastic tubing to slow down the flow of liquid.  I had been treated at a world-leading, highly funded, and, I’d thought, glamorous institution.  Yet here I was in Baltimore, Maryland, looking back on Memorial Sloan-Kettering Cancer Center and New York City as if they were underdeveloped third world bastions of deprivation.  It was as if I had landed on another planet.  It was, it still is, almost impossible to believe that two places so entirely opposite in tone and facilities could exist in the same universe, much less the same nation. And how had Sloan-Kettering done it, I wondered?  How did they maintain such a renowned reputation, such a golden glow and imperious aura, when they seemed to relegate patient comfort and quality of life to such a comparatively low priority?  I became burningly curious to find out how much each hospital spent per patient on things like IV poles, linens, exercise equipment; on anything that the patients come in contact with.

The differences didn’t stop when it came to medical treatment, either.  While I found the doctors at Johns Hopkins to be every bit as astute and just as relentless in their diagnostic zeal, they had one major advantage over the doctors that I had met elsewhere.  They had no problem answering a question with the statement “To tell you the truth, I haven’t got any idea about that.  I’d have to check up on it.”  Sometimes they would even go so far as to say, “You seem to know more about it than me.”  And then they would sit back and start asking me questions, listening intently to try to learn what they didn’t know.

I’m not trying to glorify ignorance.  Not at all.  But I had already learned to run away fast from anyone who claimed to know the most, or be the best, at anything.  I had been told countless times by doctors in New York that seeking another opinion was pointless as, “we’ve got the best neurology department in the world here.  If we don’t know what’s wrong with you, no one else will.”

That’s a load of shit, and in Baltimore I was able to see why.  Down there they didn’t try to convince me of anything, because they didn’t have to.  They had supreme confidence in themselves and were glad for me to check with anyone else, because they knew that I’d be back when I learned the truth.  I’d come back knowing I was in the best hands, not because someone had screamed it at me, or threatened me with it, but because I had seen it for myself.

At first, all this love and kindness did was to scare the hell out of me.  I said to Jackie over and over again, “These people had better cut it out.  If everyone’s gonna be so fucking nice and helpful all the time, I’m never gonna make it through.”  I’d only learned how to “fight” for my life, and I was afraid that if there was no enemy, then there could be no victory.  I
endured
their affection at Johns Hopkins, while I waited for them to slip up and show their true colors.

It seemed that my neighbors in the next room had decided to solve this problem by fighting with each other.  For two days, since my admission, we had been hearing the most awful yelling from the next room.  A female voice, filled with such hostility that it was hard to believe she wanted any kind of recovery for whomever she was screaming at.

“Why don’t you
eat it
??!!  What are you,
stoopid
??”

All day long we’d hear this stuff.

“Enough already!  You’re making me
crazy
!!!”

A husband and wife, we decided.  A special kind of affection.

On the day after my harvest, I stole my first look into that room next door.  I was strolling the halls, passing time until Jackie and my sister, Lillian, showed up.  The man was on the bed, flat on his back, with a tube down his throat, staring up at the ceiling with an incredulous and horrified look on his face.  I couldn’t believe that this was the man who was being screamed at so viciously every day.  Later on, still craving my visitors, I saw a commotion from his doorway, and out came a stretcher with the man. His neck and head looked unrelated to the rest of his body, both in color and size. Still with the tube down his throat, he made a rough, gurgling sound.  As he was pulled closer to me, his head looked like it had been inflated with a basketball pump.  And his head was blue.   Not a tinge of blue, but definitive and unequivocal.  Deep and distinct.  Desperately sucking on his rubber respirator tube, he seemed to be appalled that he was being forced to witness the beginning of his own demise.

A little later, Jackie and my sister showed up. I was never so happy and relieved as when Jackie would arrive when I was in the hospital and frightened.  She had a quality of comfort that went beyond my powers of description, and an ability to inspire me on to deeper and deeper effort and desire.  But no sooner had we arrived in my room, after my describing the morning’s events, than the family next door must have gotten word of the blue man’s death.  The shrieks and screams of agony, disbelief, and loss – incomprehensibly irreversible loss – echoed through the halls. They epitomized all of my worst fears and fantasies, my most painful imaginings of control lost, and the grief of life and love left behind.

The next morning, after popping the combination of pills that would help to destroy my bone marrow, I was taken aback when one of the doctors said, “Why don’t you go see the town today?”

I said, “What do you mean?  See what town?”

“Go see this town,” he said.  “Nothing’s going to happen here for you for the rest of the day.  For these first few days we just ask that you come back here to sleep at night.”  And so, for the next four days, I had a vacation with Jackie and my parents in Baltimore.  We saw the Inner Harbor area; we visited Baltimore’s Little Italy; I’d go back to the Belvedere and take naps with Jackie.  It was a great opportunity for us to experience some of the joy of life that we were working so hard to preserve.  A great way for us to be able to experience each other as we loved each other — before the coming days transformed us into ugly receptacles for suffering once again.  Evenings though, became sad, as I would have to go back to the hospital and be left alone.  Just as painful was leaving Jackie in a strange town to sleep in an impersonal hotel room, by herself.  I would watch her walk away down the hospital hallway, and I would feel her loneliness, and wonder why she would even consider coming back again the next morning.

* * *

Transplant day.  With the toxic chemicals having poisoned the patient’s marrow beyond any hope of survival, the time has come to begin the process of rebuilding and rebirth.  A nurse is in my room.  She is moving slowly, with a seriousness of expression and manner that renders the rest of us silent.  The nurse is cradling a small bundle of white cloth in her hands, and she is handling the bundle oddly.  Not in the shockingly casual way that blood and urine samples are tossed about, but with an equally troubling measure of exaggerated care.  She steps cautiously toward the handsome young resident sitting at my bedside, raising and lowering each foot in what looks like a parody of someone carrying eggs over slippery terrain.  Just before I make a crack about how she looks like John Cleese from the Ministry of Silly Walks on
Monty Python’s Flying Circus
I realize what’s happening.  That is my bone marrow she holds in her hands.

Although it would still take several days for the marrow inside my bones to die off completely, the effective life span of the chemotherapy drugs is short.  That is why the “rescue dose” of bone marrow, having now been “purged” of its transgressions, can be administered before the process of cellular genocide taking place inside the body is complete.  Like an invading army, the cleansed marrow cells ride into a town that is still populated by natives, but natives who are doomed from their exposure to a weapon that has been sent ahead of the soldiers, that has sealed their fate and moved on.  The occupying forces are free to enter and move about, to choose their new homes even as the former inhabitants are slowly dying off around them.

The preparations for the invasion to liberate the body are fairly extensive.  Prior to the infusion of purged marrow, heavy doses of steroids are given.  In the more standard version of bone marrow transplantation, an allogeneic transplant, a patient receives not his own purged marrow, but bone marrow from a donor.  Even if this donor is a relative with identical genetic coding, there is still the likelihood of serious complications from graft versus host disease, or GVHD.  This is a condition that is perfectly explained by its title.  The “grafted” tissue, meaning the donated marrow, has no knowledge that it has been removed from one body and placed into another.  To the perception of all the white blood cells that will ever issue forth from this new transplanted marrow, the body into which it has been deposited is actually a foreign force invading the body from which it was taken.  To combat this falsely perceived invasion these cells will fight long and hard, attacking any and all tissues of the new “host” body, causing acute and chronic problems, which can range from painful and debilitating to supremely lethal.  For some mysterious reason this syndrome is duplicated, in extremely mild fashion, in an autologous transplant, where the grafted marrow was removed from the very host it is placed back into.  In this one respect, recipients of autologous transplants, such as I, face lower risks than those whose marrow comes from a donor.  But since the risk is only reduced and not eliminated, the large dose of steroids is given on transplant day to try to control the reactions that are typical of GVHD.

In certain other respects, patients like me faced steeper odds than their allogeneic counterparts.  First, there is a slightly higher risk of relapse posttransplant.  The formula for how large a “cell kill” to go for when purging the marrow is both complex and imprecise.  The presence of even one leukemia cell in the rescue dose can lead to a recurrence of leukemia down the line.  Since there is no way to effectively examine bone marrow and be certain that no abnormal cells exist, the goal is to inflict as much damage on the rescue dose as possible without impairing its ability to regenerate.  If the correct balance is struck, the leukemic cells, with a higher metabolic rate and weaker resistance, will absorb most of the poison and die off.  Theoretically, the survivors of the purge will be the strongest of the normal cells and, once transplanted, the descendants of these hearty cells will support the life of the host body for years to come.

Unless, of course, the marrow is so devastated that not enough cells survive to repopulate adequately.  Nine days before, the morning after my harvest, a Dr. Barton had stood at the foot of my bed.  He was a small man, with right angles everywhere about his person.  He had a square head, with his hair cut into bangs that framed his face into a perfect box shape.  His shoulders shot out from his neck at precisely ninety degrees, and his arms dropped off toward the ground to complete the staircase effect.  He was a friendly enough guy, once you got to know him.  But his manner was so crisp and staccato that it was just as fearsome as the information he imparted.

“Well, Mr. Handler, we got a reasonably good harvest from you and, I expect, an exceptionally good kill ratio.  We hit your marrow hard.  If it comes back at all, you should be just fine.”