Time on Fire: My Comedy of Terrors (5 page)

I was lying on my side, on blue industrial carpeting, with my pants around my knees.  I was clutching the all-too-small plastic specimen jar in my left hand, holding it close to,
but not touching
, my penis, as I masturbated frantically and felt an orgasm approaching.  My mind was soaring, my surroundings spinning in and out of my awareness, as I struggled to give myself over to pleasure in this situation.

After all, orgasms feel good.  And that became a problem.  I was not having fun, I hated where I was, my reason for being there was catastrophic, and nothing had happened to me over the past week that was not demeaning and humiliating.  I was on my last outing from an existence of torture that was about to begin, having my last free moments before a time of great physical pain, and, as my body went rigid and convulsed, I came into the cup, thinking only of the story to be told to my children one day of how they came to be.

My children, who were dripping down the inside of the jar.  My children, who were mostly in the first spurt.

I exhaled slowly, deeply.  I got my breathing back under control, all the while refusing to grant life to the groan of pleasure and release that was reaching up and out from inside my chest.   I had a momentary image flash through me of what it would be like if God became a rapist, and that perhaps that was what He had just done to me.

Back outside room number three there was a line of men, containers in hand, waiting to get to the woman in the window.  I was fourth or so from the front, glad to be that far back, because my greatest wish at that moment was that the semen in the cup would cool off before I had to hand it over.  Blood, somehow, would be different.  Urine, slightly humbling.  I had, in the past, handed over stool specimens, still warm in their waxed cardboard containers that so resemble those in which take-out food is packed up, and felt embarrassed.  Nothing though, for me, can match the emasculatory glory of standing with four other men; a fresh, hot ejaculate in hand; waiting to hand it over to a stranger; a woman, in uniform; who then proceeds to place the now-sealed plastic container on a scale, and weigh it.

That’s right, the specimen is handed over, and, in full view of all the others in line, its weight is checked and announced, just like at the weigh-in before a boxing match.  The weight is then recorded in a giant, hardcover book, and that is how the fee for storage is determined.  I wondered if any of the other men had the same instinctive urge as I did to applaud one another as each weight was announced, to cheer each other in our accomplishment, having produced these massive specimens, as only a man can do.  “Weighing in at just under two ounces!”

Instead, we all waited quietly, staring down at the white lids to our tiny plastic jars.  Each here for his own secret reason.  Each one hoping someday to reach back in time, from a better future, and to thaw out a piece of himself, preserved intact from how he was today.

There is little chance that I could ever give an accurate, visceral impression of what the chemotherapy treatment for acute leukemia felt like physically.  But believe me, if the body had any sense of its own, it would not allow what was about to happen to begin.  Death be damned, no body would allow itself to be punctured and poisoned, to be reduced to a state of heinous malfunction without an egocentric personality running the show.  The body knows that the universe is just as accepting of its death as of its life.  Only the frightened person steering the ship believes that the Earth needs them alive as desperately as they need Her to live.

And that’s what makes chemotherapy possible.

Leukemia itself is simply an overabundant production of nonfunctioning white blood cells.  Like a switch getting stuck on, these cells continue to divide and reproduce, overcrowding the bone marrow and interfering with the production of other cells.  The bone marrow is the birthplace of all the body’s blood cells, and so the entire immune system, all nutrition, and all clotting capability is dependent upon its precise functioning.  Therefore, untreated, one would quickly die from a lack of immune response, due to the shortage of healthy white cells; from bleeding, as a result of the lack of platelets (a process that had already begun on my waist and ankles — my “rash” was actually an array of
petechiae
, tiny blood capillaries that were leaking); or from problems stemming from anemia, the shortage of red blood cells, which transport oxygen to all the body’s organs.  The basic premise behind traditional chemotherapy treatment for leukemia is to kill off as much of the patient’s bone marrow as possible without actually killing the patient.  This scheme can go wrong in a number of ways.

When chemotherapy drugs are introduced into the body, they destroy the bone marrow, as well as many other cells in the body.  The cells that reproduce the fastest consume most of the toxins, thereby offering the possibility that the marrow cells that are out of control will be obliterated before the ones that are behaving appropriately.  These variations in absorption speed also explain some of the side effects of the treatment:  loss of hair; stomach distress; terrible mouth sores, as the skin lining the mouth and throat dies and peels away.  Cells in these areas of the body naturally have a fast metabolic rate, and so also absorb a good deal of the medicine.

The greatest concern, however, is in regard to the bone marrow.  There is no perfect way to gauge just how much poison can be tolerated by the marrow, while successfully eradicating the leukemia cells.  Too much can result in the same quick death as the leukemia would have provided itself:  from infection, bleeding, or anemia.  More often, though, there is an extended battle while the patient’s blood counts drop down to nothing, and life is preserved through transfusions of red cells and platelets, and infections are fought off with antibiotics and antifungal and antiviral drugs. Since white blood cells constitute a body’s immune system they can’t be transfused.  The white cells from the donor’s body would perceive the recipient’s tissues as an invading force and attack.  Eventually, hopefully, the marrow then recovers and resumes its own life support.  If, after the marrow’s recovery, no abnormal cells can be detected under a microscope, the leukemia is said to be in remission.

This period, between the giving of the drugs and the marrow’s regeneration, is the time of pain and horror.  Any organism has the capability to overwhelm the body.  Infections attack suddenly and can be relentless.  The specter of deadly hemorrhaging lurks in every moment.  Blood transfusions are therefore essential and unending, and each transfusion requires premedication with powerful drugs and carries risks of its own.  Any infection present in the donor’s blood, including serious ones like hepatitis, can be passed on to the recipient.  This danger zone can easily last three weeks and is spent enduring high fevers, furious full body rashes, nosebleeds, vomiting, and drug induced stupors.  That’s the scenario if everything goes as well as possible.  Among the other possibilities are an internal hemorrhage, sepsis of the blood from bacterial infection (leading to organ failure and possibly death), and, one of the great fears, pneumonia.

During this time the patient is referred to by the medical professionals as being “nadir,” or, loosely translated, “nothing,” due to the zero level of white blood cells in the daily blood count.  Colored signs are posted on the patient’s door advising all who enter to take “neutrapoenic precautions” to avoid bringing any germs into the room.  The “neutrapoenic” patient has no measurable immune function, and so, a surgical mask and plastic gown must be worn by all visitors.  Hands must be scrupulously washed before each entry, even though any physical contact is forbidden.  The patient is required, in spite of the fevers and the rashes, to shower three times a day with rough sponges soaked in iodine, to avoid fungus growing on the skin.  Food must all be either cooked or peeled, as the whole world turns hostile and dangerous, and the body is transformed into nothing more than a defenseless host for myriads of parasitic organisms that had been previously unimagined.  Suddenly, it’s as if you can feel them walking on your skin; smell them in the air you breathe; taste them in every bite of food.  In the strange vernacular of the Bhagavad Gita, life is become danger, and each moment survived carries the seed that could grow destruction.

Early on in the treatment my brother, Lowell, came to visit me.  My brother, at this time, was my closest friend in life.  We had only recently stopped living together in my apartment, we spoke constantly by telephone, and it was rare that one of us got invited anywhere that the other didn’t end up going as well.  Until about a year before we had even had girlfriends who were also roommates.  We would tromp over there together, like two happy puppies, making jokes about getting laid and calling ourselves “The Breast Brothers.”  We always said that we wished that the women were sisters as well.  Then it would be perfect.

Lowell and his Touretticisms could cause quite a commotion when he’d show up at the hospital, so I had tried to limit his visits.  The last time he’d come by was a couple of weeks before; since then, as it was designed to, the treatment had destroyed my bone marrow and my immune system, and so I was suffering from a serious infection.  That’s why I was on “Shake and Bake.”

“Shake and Bake” was the nurses’ playful name for the drug amphotericin.  Amphotericin is a yellow liquid used to fight systemic fungal infections that’s administered intravenously over a period of hours each day for two weeks.  It causes raging fevers, 104 to 105 degrees, which are then followed by violent, shaking chills.  We’re talking
Exorcist
, bed-shaking, shaking chills.  Whenever the chills came it was important to call a nurse right away so she could give me a shot of Demerol, which, when mixed with the Thorazine and Nembutal that I was already getting for nausea, (as well as to control the drug induced hiccoughs that wracked my body for days on end) would calm the chills, which were then replaced by a raging fever.  This was all done to save my life.  This was called “Shake and Bake.”

I had been shaking and baking for several days already, and, in addition to having lost my hair from the chemotherapy, I had turned the color of a lobster from the amphotericin, the Demerol, the Thorazine, and the Nembutal.  I have never seen the color red displayed with such purity as it was by my flesh on “Shake and Bake.”

“Hnn.  Hnn.  Hnn.”

I heard my brother doing his Tourettic dance down the hall.  He stopped outside the room to read the name card on the door, and I could see half his body, bobbing up and down in the door frame.

Satisfied that he was in the right place he bounced into the room, with his head down, carrying flowers and a wide smile on his face, and he said, “Brother!”

When he looked up and saw me he said, “Oh, shit.  Sorry.”  And he turned and he left the room.

He had already disappeared around the corner by the time I called out to him.  I heard him stop at the familiar sound of my voice.

“Evan?  Evan?  Where are you?”

“Lowell, come back.  I’m in the room.”

And my brother
slooowly
crept back into the room, staring at me in disbelief, like we were two bad actors trapped in our own version of
The
Metamorphosis
. The flowers he held were pointing down at the ground, about to slip out of his hand.

“I…I didn’t recognize you,”  he said.

Then we had our visit.

My parents, though they would be enraged whenever I suggested it, were also exhibiting some startling effects from the strain of my diagnosis and hospitalization.  They didn’t cease to function, but their functioning was thrown off-kilter, and their judgment became confused.  My parents seemed cowed by fear in the presence of the doctors and bewildered by any attempt to comprehend the disease and its treatment.  I was becoming increasingly enraged by what seemed to be either their inability or refusal to grasp even the most basic facts about leukemia and the process that I was undergoing.  The only reason that I even suspected purposeful unwillingness on their part was that my brother had been living with a rare neurological disorder for years — medical terminology was not foreign to any of us.  Why had they abruptly lost their ability to process even rudimentary information?  The fact was that my parents were in a state of deep shock.

The treatment plan called for me to be hospitalized for a few days to receive the large doses of chemotherapy intravenously.  I would then be discharged to wait as most of my blood-making bone marrow (and so, my immune system) died off.  As a result of this marrow damage it was expected that I would inevitably develop an infection, which would declare its presence as a fever.  At that point it would become urgent to return to the hospital,
without delay
, for emergency treatment, which would last until the bone marrow recovered.  The whole process, from beginning to end, would last about a month.

Since it could be anywhere from one to ten days until the drugs did enough damage for the fever to occur, I would be discharged from the hospital to wait.  My parents were able to borrow, through phone calls to friends, a spacious Upper East Side apartment, to be used as our “safe house,” to bide the time until a fever popped up.  However, while they were able to engineer these luxurious accommodations and willing to abandon their own lives while trying to save mine, I found any input from them into the many critical medical decisions required was consistently frightening due to their lack of understanding of the issues involved.  My mother had even tried, the night before the fateful visit to Dr. Nixon, to get me to take a dose of a powerful steroid — albeit at the urging of a misguided, hometown family physician.  One possible explanation for the symptoms that had driven me to the doctor was an autoimmune disorder that would have been treated with steroids had that proven to be the case.  But in her panic, and with the encouragement of the man we’d long referred to as the “chicken soup doctor,” my mother was trying to convince me to treat something that was still undiagnosed, in a manner that could have prevented accurate detection of the leukemia.  This kind of well-intentioned, but potentially dangerous, clouded thinking had remained common all through the first hospitalization.

This infuriated me.  While I was aware that I was being ruthlessly demanding, no matter how hard I tried to appreciate the trauma they were enduring as parents, I could not transcend my rage and disappointment over the limits of their strength.  My wrath grew out of my perception that I was being denied the opportunity to have a collapse of my own.  No matter how I might have wanted to put my fate into the hands of others, it was all too clear to me that my existence in the hospital was going to be one of clawing to survive.  Forget the glamorous ring of the name of a world-class research institution.  The reality was that there were not enough pillows and blankets to go around.  Sheets and pillowcases were stained and in shreds.  To get enough of these items, as well as towels, required going to other areas of the floor, or to other floors, and swiping them before someone else got there.

There was an even greater shortage of nurses and doctors.  I quickly learned that several of the routinely prescribed drugs at the hospital, used as transfusion premedications or to combat dangerous chemotherapy side effects, gave me horrendously adverse reactions.  This should not have been such an extraordinary problem, for there were other drugs available to do the same job.  The problem was that, to save time, one drug would routinely be ordered for all the patients on the floor undergoing similar treatment.  The doctors writing the orders didn’t necessarily know my case personally.  When the nurses would bring the medication to the room, I would have to point out that, if they’d check my chart, they’d see that I couldn’t tolerate that particular drug.  This would throw everyone’s schedule into chaos.

The doctor would have to return to the floor to write another prescription, and this could take an hour or more; the new prescription would have to be sent to the pharmacist to be filled; but by the time the new drug arrived and could be administered, the time limit for administering the blood would have expired, and so new blood would have to be ordered from the blood bank.  I would be confronted, on several occasions, by a red-faced nurse who, overwhelmed by his or her own responsibilities and the lack of resources available to meet them, would scream at me for the problems that I was causing.  Since I might very well be barely conscious at the time, it would fall to someone else to keep the nurses from giving me the wrong medicine.  Often, the only way to do this was to scream back at them, louder, and for a longer period of time than they could afford to stay and berate me for refusing to take the drugs that would make me ill.

The energy required for hunting for linens, or monitoring the nurses’ work, was something that I couldn’t consistently muster.  If my parents couldn’t remember the names of the drugs that gave me bad reactions, then they couldn’t help me in one of the many ways that I needed help.  If they couldn’t challenge the bullying nurses, then I had to remain eternally alert to do it myself.  Luckily, Jackie became quite good at this.  “Look, you’re not giving him that shit.  Just call the fucking doctor and stop wasting so much time!”  she’d scream.  Finally, they’d leave and do just that.