Time on Fire: My Comedy of Terrors (27 page)

I felt like the prosecuting attorney who has his witness on the run.  I didn’t think that Jesselyn Melman considered me to be in danger.  If I was, then she might have dragged the surgeon up herself.  But I also didn’t want to have to reach a level of danger before anyone took appropriate action, and I told her so.  I might be getting “adequate” care, as she said, but just barely, and certainly nothing more.  And I thought that, on the other side of the company line she was toeing, Jesselyn Melman agreed with that and was angry at me for pointing out her hypocrisy.

“Dr. Melman,” I asked.  “What is the recommended action for an infected catheter?”

“If the infection can’t be cleared, Evan, then the catheter should be removed.”

“And if the infection is not cleared and the catheter is not removed, that could be a dangerous situation.  Am I right?”

“Theoretically, yes.  Of course.”

“So, if I have an infected catheter, and it’s been three days, and it hasn’t been removed, and you can’t give me a date and a time when it will be, how is it that I’m receiving adequate care?”

“You are receiving adequate care, Evan,” I was told.  “Because this is the best care that the hospital can give you.”

It was the purest double-speak I had ever encountered outside the pages of George Orwell’s book.  I think it would have mesmerized the inventor of the term himself.  I felt I had been quoted a credo that granted anyone who really believed it a wide license to kill.  But I never thought Dr. Melman really ascribed to it herself.  I can only guess, but I choose to believe that Jesselyn Melman was embarrassed by the statement, and that’s why, the next day, only four days too late, a surgeon arrived in my room.  With a hard yank he pulled the dripping tube from my chest, and I tried once again to rest easy, trusting that I had surmounted the last obstacle on the road to my recovery.

The staph infection required that I remain hospitalized for at least two weeks while antibiotics were dripped into my arm.  I would stand at the window, my forehead leaving greasy circles on the glass, and stare out over the East River.  At night, lights would sparkle below, from the highway, the buildings, and the boroughs beyond.  I would watch the cars pulsing like corpuscles through a vein as they crossed over the Fifty-Ninth Street Bridge.  I wondered who the people were, traveling away from this place where I was trapped, and if they had any idea how lucky they were.  I wished that I could locate one single memory of what it felt like to be free, riding in a car, driving over a bridge, leaving something, anything, behind.

My blood counts, already at dangerously low levels, continued to drop.  Neither of the bone marrow toxic drugs I was on could be discontinued – or “d.c.’d,” in hospital parlance – until there was complete certainty that both of the active infections had been eradicated.  The three brightly colored paper warning signs were once again posted on the door to my room, warning all visitors and staff members that the patient within was under “protective isolation” and that neutrapoenic precautions had to be taken upon entering.  All who entered the room were now required to don a yellow paper gown and a surgical mask and to thoroughly wash their hands before coming near me.  No physical contact was permitted, unless it was to administer medical care, and even then the provider had to be wearing rubber gloves.  This also meant that I could be served no raw fruits or vegetables that hadn’t been peeled.  I had been in this place many times before but I had not expected to visit it again.

Next to my room was another private room, with a similar set of instructions.  Inside that room was a patient with pneumonia, probably the most fearsome and lethal of the possible complications.  Every time I coughed or complained of anything resembling a shortness of breath my chest was X rayed, to make sure that no bacteria were colonizing in my lungs.  When a patient did get pneumonia, he or she was immediately placed in a private room, in isolation, but this time designed to keep them from infecting the other patients throughout the building.  A hospital is the easiest place in the world to cultivate an epidemic.

It didn’t take me long to realize that some of the nurse’s aides who came directly from this room next door – to take my temperature every four hours, to record my pulse and blood pressure, to fill my water pitcher – were not gowning up upon entering.  I saw them come out of the room with pneumonia, peel off the protective garb they wore in there, breeze into my room, and shove a thermometer into my mouth.  They would clutch my wrist as they counted my heartbeats, wrap the cuff around my arm to record my blood pressure, make their notes on my chart, and float back out the door.  I made sure to ask a few of the doctors just what precautions should be taken before entering my room and, upon hearing what I already knew, I started to complain to the workers who wouldn’t comply.

“Oh, no,” I was told.  “You’ve got it wrong, honey.  I only have to  do that stuff if I’m touching you.”

If I pressed the point, or indicated that they were, indeed, touching me when they entered, I got stiffer resistance.

“Listen, I just got undressed from in there.  I can’t be putting those things on and off all day,” was a typical response.  I began wondering if some of these nurse’s aides had been trained by Stu, my three-hundred-pound friend from Westchester County.

Meanwhile, Jackie had been taking more and more time off to be on her own.  The degree to which she had previously been sacrificing her own life was staggering, and, with my encouragement, she now came later in the day to the hospital, and stayed much shorter hours.  It was no longer unusual for her to skip some days altogether.  Her independence was something we both agreed could only be for the good, but it did leave me much more lonely, and it meant I would have to become better at fending for myself.  In becoming my own guardian, I demanded the same concientiousness I was insisting on from those around me.

I started to check the information being recorded in my chart.  By this time, I could usually give a remarkably accurate estimation of my own body temperature, without the help of any devices.  I knew when my temperature was normal, I could feel a fever beginning to brew, and once it clicked in I could count off the numbers as I started to cook.  The information in the chart was not matching what I knew to be true.

Ordinarily, this wasn’t a problem.  Under normal circumstances, electronic fever thermometers are used.  One instrument is used by patient after patient, with only a plastic sleeve being discarded and replaced between each use.  The machine gives a short beep after about thirty seconds, and a bright digital readout of an accurate temperature, down to a tenth of a degree.  But, under neutrapoenic precautions, the patient is issued his own glass thermometer, which is kept at the bedside in a glass of alcohol.  As the nurse’s aides came in and out of my room, blithely recording temperatures well below normal while I sweated through my bedclothes, the reason for the discrepancies I was experiencing became clear.  The glass thermometer was being left in my mouth for the same thirty seconds as was required by the electronic one.

The nurse’s aides lackadaisical performance may seem trivial, but in post-chemotherapy care, with an immunosuppressed patient, the fever chart is the map that holds all the clues.  It is the first document that each and every doctor consults, and all decisions spring forth from the information recorded there.  If a fever is present, then blood cultures must be drawn to find its cause.  Once the cause is known, an informed choice can be made on how to treat it.  If the information shows that no fever is present, then the patient is considered to be stable, and no treatment is prescribed.  With a neutrapoenic patient, this disparity between information recorded and reality can rapidly become disastrous.  If an infection, even a seemingly mild one, gets a head start on the medications, it can easily rage out of control.  These dangers are exacerbated by the fact that, as I was to discover, the numbers in the chart are often given much more credibility than anything the patient might have to say.  Doctors are seemingly trained to give all their confidence to the floor staff and their instruments, while maintaining a hefty skepticism toward their customers.

“Well, Mr. Handler.  Everything looks great.  We should be able to let you go home soon.”

“Really?  That’s funny, I don’t really feel very well.  I think I’ve got a fever.”

“Nope.  No fever here, take a look for yourself.”

“Yeah, but I
feel
like I’ve got a fever.  I mean, I
must
have a fever.”

“You’re probably just anxious about leaving the hospital after a long stay.  We’ll keep an eye on you for another day or so, and you should be just fine.”

It would have helped if the eye being used was kept open.  I took to taking my own temperature immediately after the “official” one was recorded, and, sure enough, where I saw written 97.9, I registered 99.6.  When theirs reached 99.4, I was really up to 101.  Again, I asked the doctors to clarify the official policy for me.  How long, I asked, should a glass thermometer be left under a patient’s tongue to gather a precise reading of body temperature?  Although it required some discussion among themselves, they ultimately agreed on a figure of at least four minutes.  Judging from the response of the nurse’s aide I told this to, I might as well have told her that she would have to strip naked and dance for me each time she took my temperature.

“Four minutes?” she cried.  “Four minutes?  I’m not staying in here for four minutes!”

I kept my own fever chart.  It wasn’t until I insisted that they take blood cultures that another infection was diagnosed, and it wasn’t until the diagnosis that my statistics were believed.  Once the truth of the situation became clear, however, the solution was just as insane as the problem.  While I never witnessed or heard of anyone instructing the staff on how to properly perform their tasks or insisting that they comply, they asked me to continue to monitor myself.  When I recorded a fever, I was assured, a doctor would be called, and blood cultures would be drawn.  Just as well, I supposed.  I wasn’t about to trust anyone else at that point anyway.

Dr. Lanford Bimberg bounded into the room.  Dr. Bimberg was a giant man, tall and broad, who gave the impression that his borders were intent on a continued expansion.  Long before a movie was made of The Flintstones, in my casting portfolio, Lanford Bimberg had been slated to play Fred.

I had never chosen Lanford Bimberg as my physician.  Just as, when buying a car, one cannot get the air-conditioning without purchasing the floor mats, he came as part of the dealer package.  After establishing my early relationship with Dr. Melman, after initially becoming comfortable with her, and she with me, I was informed that they had gone into business together.  They would share patients, I was told, and they would alternate, month by month, between the inpatient and outpatient duties.  It was the last week of the month when this plan was revealed to me, and I was already scheduled for a stay in the hospital.  The next week I would have a new doctor, and from that point on, the doctor I saw – either the one I’d chosen, or the one I’d had thrust upon me – would be decided on by the calendar, and nothing more.  Someone should have handed me another informed consent form to read, this time outlining the risks and possible side effects of dealing with Lanford Bimberg.

Since there was serious concern over the precipitous drop in my blood counts, a bone marrow aspirate had been taken earlier in the day to investigate the cause.  Given the fact that I’d just received a bone marrow transplant a few months before, recurrent leukemia, while utterly catastrophic, would not have been a statistically surprising development.

We had been through this countless times before.  Jackie and I, my family and friends.  A doctor would come early in the day, suck some bone marrow out of my body, and disappear with the slides.  As had happened on that day long ago with Dr. Nixon, we would then have to wait.  We had waited outside Dr. Nixon’s office, on that day that was remembered more like a legendary story I’d been told rather than as an actual event from my own existence, for more than three hours.  Back then, we’d had no notion of what we were waiting for.  Our faces had twisted into grotesque attempts at smiles as we’d joked and teased each other, our own creeping terror the only clue to what level of solemnity might be called for.

Since then, waiting for the results of a bone marrow aspirate had become an occasional, but somewhat routine, trial.  We would try to amuse and distract each other as hour after hour passed.  No matter how strained our relations had become, on those days my parents and I were glad to have each other there.  The more people there were to pass the time, the less each of us would have to continually lift in order to keep the weight of the vigil from crushing us.  Each time the door to the room opened, each unexpected creak of the hinges, of which there could easily be twelve in an hour – the custodial crew to clean, a technician to test the oxygen valves, nurses and their aides, delivery of the meal tray, a visit from a volunteer – caused a coalescing of the separate energies in the room.  From my mother reading the newspaper to Jackie and me working on a jigsaw puzzle.  My father asleep in the chair or my brother or sister watching the television.  Like the seven fielders behind the pitcher on a baseball team, whose random, disparate wanderings are united into a single, concentrated moment as the ball is pitched, each time the door swung open our heads lifted, the conversation stopped, and the air in the room grew still because it was no longer being breathed.  Each false alarm was followed by an awkward intimacy and a few chagrined smiles, with which we hoped to re-create our temporary denial of the news we were girding ourselves for.

So far, each time the pronouncement was made, we had been spared the horror of having to not only imagine, but to confront, our worst fears.  This time, when Lanford Bimberg barreled through the door, five and a half hours after the bone marrow sample had been taken, my parents had already left for home.  It was late in the day, heading toward a Friday night.  Jackie and I had been alone for the last few hours, and, as Lanford Bimberg spoke, I had my first glimmer of awareness of the distance that had been steadily developing between my girlfriend and me.