Time on Fire: My Comedy of Terrors (25 page)

Two weeks later, after recovering from the Candida Krusie assault, I was released from Johns Hopkins and taken back to the Belvedere Hotel.  The treatment plan called for me to remain in Baltimore for a few more weeks, to be seen daily in the outpatient clinic, before being remanded back to a hospital closer to home.

The day of my discharge was a steaming hot, humid summer day.  While I had taken a few strolls outdoors in the latter stage of the hospitalization, for the most part, I had experienced nothing but a filtered, air-conditioned atmosphere for two months.  Since I was still considered to have serious immune system impairment, in spite of the heat, I left the building wearing a long-sleeved shirt, a jacket, a baseball hat, and a protective surgical mask.  My fear over the contagious contamination of everything I might come in contact with had me wishing it was winter, so I could have added gloves and a scarf to the ensemble.

As we spun through the revolving door and into the lobby of the hotel, we resembled an awfully strange entourage.  My parents led the way, pushing the doors around, while I shuffled in my own compartment right behind them, afraid even to touch the glass.  Behind me, bringing up the rear, was Jackie.  She was making certain that the door didn’t move too fast for me, that no one behind her sped it up to the point where I might trip and fall down.  When my parents emerged they peeled off to opposite sides and flanked me for our trip to the elevators.  Jackie burst ahead to hold a car, to make sure we had one to travel in by ourselves.

Walking gingerly into the lobby, wrapped like a mummy and skinny as a rail, with every surface covered so as to be nearly invisible to the human eye, I felt like Michael Jackson going into seclusion after plastic surgery.  I wanted to get into the elevator and up to our room quickly, with as few people catching sight of me as possible.  Barely out of the revolving door, though, I heard a stirring from my left and sped my steps only to see that the disturbance I had noticed was actually all activity coming to a halt.  The desk clerks and bell-hops, security guards and managers all stopped whatever they’d been doing and turned to face in my direction.  I put my head down, humiliated, and wished that I could have disappeared.  I couldn’t believe that anyone, much less a hotel lobby filled with people, could be so insensitive as to stand perfectly still and stare at someone, especially if he looked like a freak.  When I first realized they had begun applauding, I stopped walking mostly out of bewilderment.

Turning to face the room, an ornate and sprawling marble foyer, I saw the entire lobby staff, as well as many of the guests – some smiling and others crying – as they clapped their hands.  The applause went on and on, while I simply stared back, baffled.  I hadn’t realized that so many people had been following my progress.  I suddenly caught a glimpse of the lives my parents and Jackie must have led those eight weeks, surrounded by strangers, spilling their plight to anyone who’d lend a sympathetic ear.  The anticipation of how much my journey back would mean to others, if I could make it there and stay, had long been one of the greatest inspirations I’d prodded myself on with.  Seeing my fantasy so graphically displayed only increased my appetite.  In the lobby of The Belvedere Hotel, I felt as if I had entered one of my fever-induced hallucinations while I received a long awaited standing ovation.

The completion of a bone marrow transplant doesn’t equal immediate safety.  The procedure is not a foolproof one.  While surviving the dangers of the treatment itself is a large accomplishment, a full 50 percent of those survivors will again develop leukemia.  The new wrinkle in this statistic, as opposed to the numbers associated with conventional chemotherapy, is that these recurrences happen rather quickly.  Within twelve months, in most cases.  While there are a few “stragglers,” as I’ve heard them referred to, of those treated in the same way that I was, for the same disease, recurrences after twenty-four months are extremely rare.  Those who make it back for their one-year, certainly their two-year, check up in good health are considered to be “out of the woods,” and in all probability cured of their leukemia forever.

When I first heard it, this struck me as remarkable news.  With all previous forms of treatment, life had become a long, mysterious waiting game, with years and years of uncertainty ahead.  The compression of the critical period was both a relief and a torment, as one might feel crossing the last hundred yards of a minefield.  Safety can be seen.  It can be imagined.  At times it even feels as if it has arrived.  Yet the chances for destruction remain just as present with each step.

Added to the hightened tension of the condensed time frame were the medical instructions upon leaving the hospital.  My immune system would recover slowly, over the course of several years.  For the first six months, I was strongly urged to practice extreme avoidance of all public places.  No restaurants, no movies, no public transportation.  I was told to avoid contact with children, with animals, with plants, and with soil.  That I should share breathing space with no one who had recently been ill, or with anyone who had been around someone who was ill.  In essence, I was told, for the next six months, “don’t go any where besides the hospital for your check-ups, and unless you know exactly where they’ve been, don’t invite anyone over to your house.”  The home stretch in the race to regain contact with the world required first that time stand still, while I lived in solitary confinement for six months, with no frame of reference for how long that was, or how quickly it might be passing.

Except for
Wheel of Fortune
.  Two hundred and sixty episodes of
Wheel of Fortune
, to be exact.  It came on twice a day five days a week.  And it became my clock; it became my calendar.  I’ve often thought, since then, of applying as a contestant, because I can honestly say that
Wheel of Fortune
helped cure me of leukemia.  I’ve even suspected, at other times, that game shows themselves have curative powers.  My association of game shows with illness goes back deep into my childhood, when the lineup of
The Price Is Righ
t,
Concentration
, and
Match Game Seventy-Something
would act as my nurse whenever I stayed home sick from school.  The shows developed a comforting quality, as I knew when and where to tune in to find the same familiar faces that would help me to pass a lonely day.

But it was
Wheel of Fortune
that captured my heart.  I suppose it was the lottery-like spinning of the wheel, which echoed the tentativeness of my own existence.  Because even after the six months had passed, as I began to venture out — and as I tried so very hard to engage in life and to forget how dangerous the outside world  had been for so long — I continued to watch
Wheel of Fortune
.  I found, in fact, that I
could not stop
watching
Wheel of Fortune
.  The treacherousness of that wheel – the cold, heartlessness of the black “bankrupt” mark on that wheel – now spoke to me in a language that I could understand far better than the one spoken by any of the people that I knew.

Due to the damage inflicted by the transplant, my bone marrow was unable to keep up with my body’s need for blood cells.  For the time being, until the marrow was sufficiently recovered, I would be dependent on periodic blood transfusions.  But not just any transfusions.  As a result of the frequency of other people’s blood components being poured into my body, I had developed a resistance to most of them.  As with constant exposure to a particular drug, the body’s defenses learn to nullify the effects of any steady intruder.  This was the same problem I had seen earlier in my old friend Willie Dingle.  Whenever I was transfused with packages gleaming with blood cells that would once have bounced my blood counts off the charts, now there was hardly any rise at all.  This multiplied the number of transfusions I would need dramatically – increasing the risk of transfusion-related infections – and so made it necessary to transfuse me with single-donor blood products whenever possible.

Generally, blood products, such as platelets, are composed of mixtures of cells from several individuals.  Due to exposure to several different intruding organisms, this increases the possibility of rejection, and of allergic-type reactions in the recipient.  When a patient becomes resistant to transfusions, single-donor products are often tried.  When resistance rises to the point where even single donors are problematic, sometimes the patient fares better with one or more particular donors.  In my case, this turned out to be my mother, and her sister, Bara.

Bara’s platelets, especially, were like the Dom Perignon of blood products.  Whereas a normal transfusion of mixed-donor platelets wouldn’t even cause a blip in my blood counts, Bara’s platelets shot the numbers straight up.  This discovery relieved me tremendously, but, I’m afraid, caused Bara quite a bit of discomfort.  Every third day or so, as often as she was allowed, Bara would troop into New York from her home in New Jersey to be drained.  She showed up in my room afterward with her arms bandaged, sporting a fresh bruise from the latest needle.  When the veins on the inside of her elbows eventually collapsed, Bara offered up her wrists.  Although she never complained, I’m sure Bara had to be a little relieved when the doctors decided that, rather than risking my developing a resistance to her platelets as well, her blood ought to be reserved for any emergency circumstances that might arise.

All of these transfusions would be administered through my Broviac catheter, the small rubber tube that had been implanted in my chest several months before.  As it had through the intense treatments leading up to and including the transplant, this tube offered direct access to my bloodstream without requiring a needle to be stuck through my flesh.  The relief that this offered was enormous.  During my sixty days at Johns Hopkins, the nurses had often been able to do their predawn blood-letting without even waking me up.  They would let themselves into my room, leaving the door to the hallway open to provide themselves enough light, and then gently coax me onto my side so they could get at the little rubber nipples at the ends of the tubing.  Like a sleepy heifer in the trusted hands of farmer Jones, I’d drowsily let myself be milked each morning.  Milliliters; pints; gallons.  They could have drained my body of fluids altogether without my ever becoming aware of it.  The only thing that alerted me to the procedure was the chemical taste that would flood my mouth as the nurse injected an anticoagulant into the tube to complete her mission.  This last step was necessary to avoid blood clotting in the tube and cutting off the easy access that was its very purpose.

As with many things in this world, however, such convenience carries its own risk.  Easy access to the bloodstream for medical professionals means equal access for lethal bacteria.  Many of the billions of organisms that exist on our flesh every moment of every day would be quite capable of carrying us off this mortal coil if they were able to gain direct entry to our tender inner parts.  It’s why you should wash your skin and dab it with disinfectant when you cut yourself.  It’s the reason why it’s a good idea to spread some antibacterial ointment on an oozing scrape.  The bacteria are always there, but we think about them only when we see the evidence of their opportunity.  When we see what’s supposed to stay inside coming out, we get the notion that something that’s supposed to stay outside might get in.

Having a small rubber tube bursting through an opening in your flesh for months on end creates opportunities for even the most complacent of bacteria.  The fact that the other end of the tube rests deep inside a vein at the entryway to the heart makes the pathway something more than merely direct.  It makes it immediate.  Add to the equation moderate to severe immunosuppression inside the compromised fortress, and then figure in the act of piercing the rubber ports at the end of the tubing several times a day –  to pump fluid in or pull fluid out – and you have major infections waiting to happen.  In fact, the patient who avoids getting an infection in his access line at one time or another is almost unheard of.  That’s why scrupulously adhering to safe hygiene practices becomes necessary.  And after tenderly caring for my equipment for eight months without incident; after completing a bone marrow transplant, with the scent of freedom filling my imagination, I wasn’t about to stop demanding ruthlessness.

Each day for the past eight months I had done as I had been instructed.  After washing my hands thoroughly, I laid out a series of sterile packages.  I carefully pulled off the bandage covering the site where the tiny tube poked out of my chest, and inspected it for any redness.  If all was well, I opened the package containing the first of three Betadine swabs.  These were very much like giant QTips that had been saturated with Betadine, a powerful iodine disinfectant.  The soft, wet head of the swab was then placed directly on the insertion site and, moving always outward from the center, wiped around and around on my skin in a circular pattern.  The key was to never move the swab backward over where it had already passed.  Any bacteria near the site would first be doused with Betadine, and then moved away from the broken skin.  After discarding the first swab, the procedure was repeated twice more.  Once cleaned, the area was then coated with a small dab of antibacterial ointment and covered with a new bandage.

Besides the daily cleaning, each of the two ports that the tube split into had to be “flushed” every day with heparin, an anticoagulant.  This is the same procedure that the nurses performed after every infusion or extraction, and it required its own special care.  In probably the most crucial aspect of infection control, each time a needle is stuck into the soft rubber of one of the ports – an event that can happen dozens of times a day – the surface of the rubber has to be sterilized, lest any bacteria present be pushed right into the patient’s heart and pumped throughout the body.  Carelessness in this area can lead to an infection lodging inside the tubing inside the patient’s body.  Due to the extreme difficulty in clearing this type of infection, even with intravenous antibiotics, removal of the access system from the body altogether can be required.  This not only increases the amount of pain and difficulty for both patient and practitioner thousandfold, but if the infection reaches a point where it can no longer be controlled, death can result.  Mortality from an infected access line is not an uncommon occurrence.

In trying to minimize my risk of infection I had already traveled far and wide.  Johns Hopkins insists that, as long as “adequate” care is available in a patient’s home state, those patients seek their longer-term aftercare there.  Limiting the patient load is one of the ways that the hospital is able to maintain the level of care it manages to deliver.  The first strategy was, immediately after completing the transplant, to move in with my mother and father.  After our experiences in differentiating between the quality of treatment in New York City and just about anywhere else, we thought that the more rural approach of the Westchester County Medical Center in Valhalla might be a soothing alternative.  The hospital in Valhalla had just opened a transplant unit, and I paid my first visit shortly after leaving Baltimore.  Thinking that I had already seen most everything a major medical center had to offer, I was soon looking at Sloan-Kettering from a new perspective.

In Valhalla, the doctors’ offices were located in a different building from the blood lab.  Since all cars had to be parked in the day lots, this meant that, on the day of my very first visit, after having my blood drawn, I would have to walk a quarter of a mile, in the rain.  When we arrived in the doctors’ air conditioned offices, wet, we discovered that the hematologist I was to see, the man who was treating bone marrow transplant patients, shared his waiting room with a pediatric surgeon.  After being told that spending too much time around a potted plant might be enough to kill me, I was sitting in a room filled with children and, at times, their pets.  Across the aisle was the young brother of a patient.  I heard his mother remark that he’d just gotten over the chicken pox.  I nearly held my breath until we got back outside.

Since I would need a platelet transfusion, we then headed in the direction of yet another building, this one a slightly longer walk away.  Something told me this transplant program had not been terribly well thought out.  That was before I met Stu.  Afterward, I decided that it had been brilliantly designed — if the intent was to end life as efficiently as possible.

Stu was the three-hundred-pound nurse who ran the outpatient transfusion facility.  He was friendly, eager to please, and concerned about my comfort.  And he was an absolute pig.  Stu sweated more than any living creature I had ever seen, and he wiped the sweat off his brow with his right hand.  His right hand, it appeared, also had a fingernail that was bothering him, because he immediately and repeatedly kept thrusting one of the fingers into his mouth, where he chewed and sucked on it.  Stu put most everything else he touched into his mouth as well.  The caps to the pens he wrote with; the pens themselves, which he gnawed like a giant starving squirrel; the wrappers to the tubing and needles, which he tore open with his teeth.  When he uncapped the needles the same way, exhaling all over the one he was about to plunge into my Broviac catheter, I wanted to leap out of my reclining chair.  The problem was, I was already medicated for the transfusion, with an antihistamine that acts as a sedative, and all I could do was close my eyes and pray that Stu was healthier than he looked.  Once the transfusion was complete and I was back to myself, I stumbled out to my parents’ car, drained and pale, where we drove away fast and never looked back.  I went back to my apartment in New York City, and back to Sloan-Kettering, which suddenly didn’t seem like such a bad idea.  I should have known better.