Time on Fire: My Comedy of Terrors (3 page)

This was the beginning of my medical education.  The very beginning.  Kessler told me that I should see a hematologist, a blood specialist, as soon as possible.  The reason for the platelet problem had to be found.  I was also told at this point that I was slightly anemic, meaning that I also had a shortage of red blood cells floating around, and that although the level of white blood cells was normal, there seemed to be some abnormally formed ones that needed explaining.  None of this meant very much to me because I didn’t have any idea what any of these cells did anyway.

When I look back on those conversations with Kessler I’m struck by a feeling of wonder.  They were like the last moments of some previous life.  When terms and substances that were about to become the focus of my life, the focus of the struggle to keep my life, seemed like a foreign language that I didn’t need to learn.  As long as I could get by, make my way through with enough knowledge to order from the menu and find the bathroom, I’d be home soon.  Back in my own country, where everything was familiar and I knew what to expect and I could feel safe.  But I never made it back.

Dr. Zweig arrived in my hospital room sometime Monday morning dressed in a long white coat with the word “Attending” stitched over his heart.  He was a tall man, with a bit of a paunch, who sported enormous sideburns and who seemed to be terribly uncomfortable being around someone whom he had been told was ill.  He looked just like a giant Groucho Marx.  He was followed by another doctor whose name tag read “Fun,” and whose eyes remained available for contact just as steadily as Zweig’s didn’t.  Fun didn’t speak, he just nodded and smiled.

The only other meeting I’d had with Zweig had been on the phone three days before.  He’d returned our call while we were trying to decide what hospital to put me into.  At that time he’d said, “I’ve spoken with the doctor who made the diagnosis and everything seems to be in order.  So have a good weekend and we’ll get started by having you admitted on Monday.”

“Do we have to wait until Monday?” I asked. “I’d like to get started as soon as possible.”

“We only admit emergencies on weekends,”  he said.

“Acute leukemia’s not an emergency?”  I heard my voice speaking the words, and I realized right away I might have sounded sarcastic.  I was
being
sarcastic.  I
meant
to be sarcastic.  But, for some reason, I didn’t want my new doctor to know that I was capable of sarcasm.

I told him that I was worried about the platelets.  I had been told that patients with platelet counts below fifty thousand should be hospitalized.  He said that yes, most hospitals would admit me as an emergency case immediately. “But we do things differently here.  Don’t worry.  Have a pleasant weekend.  Come to the emergency room if you start bleeding.”

“Come in if I start bleeding.”

“Yes, that’s right.”  And he was gone.

I hung up the phone and I lost it again.  I cried silently at first, and then, with mounting fury, I began to sob so hard, with such intensity, that the sounds that I made became beastly, animalistic.  I remember having at least a fleeting sense of embarrassment about it.  Not really embarrassment; it’s just that my ego didn’t completely disappear.  It couldn’t compete, but it was there.  And I didn’t like my girlfriend seeing me that way.  It didn’t fit in with who I had been with her for the past year.  I was a strong, successful guy.  My career was about to take off.

Well, we all got used to it.  It was going to become a constant companion.  There would be Evan, and his crying jags.  It became commonplace for me to just start crying at various times during the day.  The progression was something along the lines of constant, to common, to predictable, to boring, and ultimately, meaningless.  Just something that had to be done every day.  Like eating, or moving my bowels.  An activity that had always had powerful emotional connotations took on the appearance and impact of an involuntary bodily function.  Eventually I wouldn’t even interrupt whatever I was doing.  I would just carry on, while weeping quietly for as long as it needed to last.

My mother had the idea that a Valium might calm me down.  I was eager to pop a pill, but we weren’t sure if it was safe, so my father, who had been given Dr. Zweig’s home phone number before I had spoken to him, put in a call to the doctor.

My dad is a pretty cool dude.  I mean, I think he’s actually every bit as hyped up and neurotic as I am, he’s boiling inside, but he has the ability — a real talent it is, too — to put on a very suave, smooth exterior.  It probably comes from running an advertising agency for so many years through so many near crashes.  I have vivid memories of seeing him in his office when I was a kid.  His feet up on the desk, a phone receiver cradled between his neck and shoulder, huge amounts of tension, concern, and frustration on his face, and a voice being sent through the phone line that was nothing but calm and soothing.

My father spoke into the phone.  “Good evening, doctor. Murry Handler calling you.  We spoke earlier about my son Evan.”  My father continued with the question about the Valium and then suddenly stopped talking.  I watched his face go through a wide assortment of silent expressions.  Finally, he flushed a deep red, as if he were coming to grips with a difficult decision, and said, “All right.  Thank you, doctor.”  And my dad’s voice still had that smooth tone, but it was stretched so tight and thin that it seemed about to snap like a rubber band.

“You can take the Valium,” was all he said to us.

“What happened?” we all asked.  “What was that all about?”

“He told me I was abusing the privilege of having his home phone number,” my father said.  And he looked like a frightened, scolded schoolboy, in the body of a suddenly old man.

So here was Dr. Zweig, in the flesh.  In spite of his dismissal of our concerns, and his assurance that “nothing happens in the hospital over the weekend,” we’d managed to get me admitted to Sloan-Kettering first thing Saturday morning.  Besides learning that he’d been right about the lethargic pace of weekend hospital life, I found out that news travels fast in the medical gossip network.  At our first face-to-face meeting, on Monday, Zweig already seemed to know that I had been forced to leave a Broadway show in order to check into the hospital.

“So, you’re an actor, huh?”  Zweig said it while he stared at his feet and kicked an old, stained piece of gauze bandage along the floor and under the bed.

Before I could answer he said, “I don’t really care for Neil Simon plays, myself.”

Then he dropped a heavy packet of pages on the meal table next to my breakfast.  He took a deep breath, and while he scanned the room with his eyes and touched and studied the cards and gifts left with me over the weekend, he said, “You’ll be part of a randomized study.  A computer has already selected a new, experimental treatment protocol for you.  Half the patients on the study get the new protocol, the other half get the standard protocol.  If you agree to be part of the study, you’ll have to sign the informed-consent form I just gave you.  If you don’t sign it, then you’ll automatically get the standard protocol.”  He took a pen from his shirt pocket, laid it on top of the pages he’d thrown down before, and he stood still and looked at me for the first time.

I was sure he was going to have more to say, but it turned out that he was done, so there was a very long pause.  Finally he said, “Feel free to read it, if you want.”

“Uh, yeah.  I think I would like to read it.”

“Well, of course you can read it.  We want you to read it.”  With that, Dr. Zweig flopped down into a chair, crushing a large, flat gift box beneath him.  He sighed deeply and, staring at the ceiling, he said,  “We can’t get started until you sign it, though.”

Then he again started picking up some of the get well cards.  Opening and closing them, running his fingers over them to feel their textures.  It was as if they were peculiar artifacts from some ancient civilization whose customs he just couldn’t come to understand.  His brow would wrinkle up, and he’d let out a sharp breath of air from his nose.  I found myself surprised when he put a card back down without sniffing it and licking it.

Instead, he shot up out of the chair and said, “We’ll stop back a little later to pick it up.”  He turned, and he walked out of the room – leaving Dr. Fun – who nodded and smiled, and then left the room himself.

Jackie now came over and sat next to me on the bed, with her chin resting on my shoulder, and we read through the pages together.  We  sat in the room by ourselves, side by side, and we learned that I would be treated with massive doses of chemotherapy drugs three times, covering a span of six months.  I would spend three of those months in the hospital, most likely being quite ill and in constant danger.  A month off to recover would be given between each of the treatments.  A successful first remission could be expected in 65 percent of the patients treated this way.  Twenty-five percent never achieve remission and die from the leukemia.  One out of every ten dies from complications of the treatment itself. The authors of the consent form had an interesting way of describing those people.  They wrote of the “patients failing the protocol,” rather than the other way around.

The information went on.  Let’s say you got to be one of the lucky 65 percent.  Eighty percent of them have a recurrence of the disease within two years.  A second remission is achieved in no more than 50 percent of those cases, and the length of that remission averages in at only one half the length of a first remission.  Third remissions are achieved in less than 5 percent of those who try.  This section of the consent form ended with a sentence which was, visually, indistinguishable from those around it: “Survival rates beyond five years do not exceed twenty-five percent.”

I looked at that sentence for a long time.  I studied the way the ink stained the clean white paper to form the letters, and how the letters formed the words that were conspiring to end my life.  I started to cry, and Jackie sat holding me, rubbing my back with the palm of her left hand.  Then she cried, too.

I have never felt love for a woman with such a startling intensity as in those moments with Jackie.  I’m just like a lot of the men and women that I know.  I can’t resist someone in direct proportion to how unavailable they are to me.  Love, in my life, has been an endless cycle of passionately wooing women to win their love, followed by a scramble to escape as soon as the mission is accomplished.  If the escape is successful, they’re wooed back with greater and greater cunning and desperation as the drama is played out again and again and again.  The repetitions are limited only by each woman’s patience, or, more accurately, her endurance.  It’s not that I don’t love them, I do.  Every one of them.  It’s just that I need to feel that I’m about to lose someone to stay interested.  So I can win her back.  And what’s a better way to know you’re going to lose your woman than to learn you’re about to die?  I fell madly in love.

“Do you think you’re going to die of leukemia, Evan?”

It was midnight, my third night in the hospital, and Karen was in a chair pulled close next to my bed.  With dark hair framing her doughy face in the light leaking in from the hallway, her head seemed to float in space, making her disembodied whisper all the more eerie.  Karen was a nurse on her first break after coming on duty at seven, and she’d promised to stop by to talk with me when she got a chance.  This wasn’t quite the conversation I had been expecting.

“Well, you might,” she said.  “A lot of people do, you know.  Most who get it, in fact.  And there’s no point in spending all your energy trying to deny it.”

Karen and I had met just a few hours earlier, after I had been told by three or four nurses that I really ought to meet her.  “Oh, you and Karen would really get along,” they all said.

Maybe they were trying to get back at me, I thought.  I had already spent the weekend chafing at fitting myself into the “system” of the hospital, and I thought I felt the nurses losing patience with me.  But their system seemed nuts.  I was constantly being sent for tests with no warning or information provided to me.  A nurse would simply arrive in the room and announce that they were “ready for me.”

“They’re ready for you at X ray!” they’d sing from my doorway.  “Ready for you at nuclear medicine!!  Ready for you at sonogram!!!”  And I was expected to go.  If I asked why a test was needed, I was told that it was needed because they wouldn’t treat me without it.

These tests happened in far-off branches of the hospital, reached through long underground tunnels.  I’d be met in the hallway near the nurses’ station by an “escort,” without whom I was forbidden to travel off the floor for my procedures.  The nurses demanded that I sit in a wheelchair and be pushed by the escort to wherever it was that they were “ready for me”.  My first thought was that I’d never again be able to fantasize over the late-night cable television porn ads.  I found myself imagining calling one of those escort services and winding up with a wrinkled, old Filipino man pushing a wheelchair ringing my doorbell.

Down in the basement of the hospital, I’d be met by a technician dressed in blue surgical scrubs, giant blue booties, and a blue shower cap.  On one of my early trips down, a tiny, fast-talking Korean woman pulled me up out of the wheelchair by the sleeve of my shirt.  She dragged me through a small, brightly lit waiting room, past rows of patients who were all dressed in their own blue space outfits.  These patients were sitting on hard plastic chairs, and they were each staring at the single white floor tile right in front of their own giant blue feet.

The technician pointed me toward a doorway off this room and, in the most staccato display of human behavior I’d ever seen, she barked at me ferociously.  “You go in this room
here
!  You take off all your clothes!  You take off all your underwears, too!  You put on this robe
here
!  You come back outside this room!”

I stood still, staring at her dumbfounded.

“
You come back outside this room!
  You sit down in this chair
here
!”

The most amazing thing about this scene was that none of the blue patient people even looked up.  No, they all kept staring at the floor right in front of their feet.  I was afraid that if I put on those blue clothes, I’d become just like them.  I wondered if anyone had ever rebelled.  I mean, John Wayne had cancer.  Did he put up with this?

Then there were the patients back up on the twelfth floor.  The screamers, the limbless, the ghostly.  My first roommate, Joel, and his mother.  Until early Monday morning — when his bed was wheeled out and he inexplicably disappeared, never to be seen again — I’d sat in the room with my family and friends and heard his doctors brusquely charge into the room for their daily visits.  On the far side of the curtain they would gruffly lay out absolutely horrifying scenarios and treatment plans in very complex language, then leave and joke and laugh their way down the hall. That was the only thing that stopped Joel and Mom’s crazy chatter.  After the doctors left they sat in complete silence for ten or fifteen minutes.  Mom would then start a one-sided discourse completely twisting and respinning the doctor’s report until it was nothing but a fairy-tale version filled with her own fantastic dreams and distortions.  If she ever raised any questions about Joel with the doctors or tried to participate in any of the decision making at all she was trampled.  Bulldozed by technical terminology and patronizing platitudes until she shut up.  Then the doctors would get out of the room fast.

About two-thirds of the other patients I’d seen so far were attached to IV poles whose wheels didn’t work.  They didn’t roll right.  I’d watch people, up and down the hall, wrestling with these poles, or coasting out of control until they slammed into the wall.  Some of the people had just picked the whole contraption up and were carrying it around with them.  But I didn’t see anyone fighting back.  The few tentative protests that I had made so far, about being pushed in a wheelchair, say, were met by the nurses with chuckles and nods to each other that seemed to say, “Oh, how cute.  One of those.  We haven’t seen one in a long time.”  Always clear in their communication was that they knew exactly how to deal with my kind.

Just that morning, two nurses had come into my room to make the bed.  They were being really friendly, asking me to tell them all about myself.  “Oh!  An actor.  How nice,” one of them said.  “We’ve had a lot of actors here.”

And the other one said, “Sure, sure.  Johnny Cazale died on this floor.”

So maybe Karen was my punishment.  Sent to torment me into submission and cooperation.  She cooed spookily into the darkness.  “Are you religious, Evan?”  she asked.  “Maybe you’d better spend some time thinking…about
faith
.”

Sometime later that night, I don’t know how long after I’d fallen asleep, I was startled awake by my new roommate, Robert, crying out.  His voice sounded like it was coming from the bottom of his soul.  He said, “Hi…,”  with a combination of wonder and joy and resigned acceptance.  Inevitability, that’s what I heard him express.  And it was terrifying.

My immediate thought was that he was dreaming about meeting someone he had never expected to see again, and that he was being torn away from them at the same instant as the reunion was taking place.  And “hi…” was all that he managed to get out before they were gone.  Then I thought it sounded as if he might be meeting God.  And that was the next thing he said.  “God!”  I put the pillow over my head.  I wondered how a person might
create
faith in their heart.  Was it possible?  Could a person
will
himself to believe in God?  To entrust his safety to a universe that had landed him in this situation to begin with?

Earlier that morning I’d received my first mail at the hospital.  One of the cards was from a friend of my parents, a woman who had adopted fundamentalist Christianity several years before, after her oldest son was diagnosed as  schizophrenic.  The card had a colorful painting of Jesus Christ on the front.  His expression was warm and friendly, his arms spread open with his palms facing upward in a welcoming gesture.  I opened the card, and the printed message said “Only when you accept Jesus Christ as your savior will your soul be safe in the kingdom of Heaven.”  I closed the card fast.  I felt like I’d just received a letter threatening my life.  From a close family friend.  Or was it being threatened by Jesus Christ himself?

I was really shaken by that card, until I opened the one from my parents’ neighbors.  A couple whom I used to baby-sit for, and who I still saw a few times every year.  Theirs was one of those pop-up cards — when I opened it, a picture of a bouquet of flowers unfolded toward me.  They had written their message in pen down the side.  “Dear Evan,” it said.  “We want you to know we are thinking of you, and we will always remember you.”  We all had a good laugh over that one.  And it made me forget about Jesus threatening my life.  For a while.

I began giving more and more thought to what I might depend on to pull me through the months ahead.  I realized that, in my nonreligious family, the only faith that had ever been instilled in me, during my childhood, was a faith in myself.  Even if I had wanted to respond to Jesus’ offer of salvation, it seemed impossible to impose an entirely new set of beliefs on such short notice.  But I began to think that if I could find some form of spirituality that relied primarily on me, and on maximizing my own potential, maybe I’d have a shot.  I had no idea what form it should take or where it would come from.  But, in the hopes that pleas from even the most skeptical souls can be heard in Heaven, I started praying to whatever God might be willing to listen.

*  *  *

I’d been hearing for days about the “chemo nurses,” how great they were, what good hands I’d be in.  I couldn’t understand why special nurses were needed for the chemotherapy, though.  I’d been having my veins punctured for four days already.  To leak blood out, to pour liquids in.  Some of the vampires were definitely better than others, but why “chemo nurses”?

These women wore special little caps, like what you’d expect to see on nurses in a 1950s movie.  They acted pert and spunky, wore their hair in Donna Reed flips, and, in so doing, they almost succeeded in disguising the grave seriousness they brought to the task of correctly identifying the live body in front of them.

One of the team of two took  hold of my left wrist with one of her hands.  Her other hand gripped my fingers, and, with me effectively immobilized, she positioned the hospital name tag bracelet in front of her face and read my forearm like it was a fortune cookie.

“What is your name?”  she asked.

After I told her, the other nurse said, “Now spell it.”

This was not Donna Reed anymore.  Thinking that they were through with my limb, I sent a message from my brain to what had been my arm to go quietly back by my side.  But my arm no longer belonged to me.  The chemo nurse held tight and seemed to notice not one bit that I had tried, with a good deal of strength, to reclaim it.  She then proceeded to repeat my name herself, repeat the spelling of my name, and read off the patient ID number to her partner, who was checking the information off on pink sheets of paper attached to a clipboard.  When I again thought that they were through, the nurses suddenly switched roles, and the one with the clipboard began barking out all the facts over again as the one who held my wrist studied the ID bracelet, mouthing the words silently as she read along.

When the security check was complete the two women
popped
, like a bubble bursting, back into the Betty Crocker mode.  They were asking me about my life, gurgling and fawning over everything I said, as they quickly, gracefully, with military precision, attached tubing and clamps to the IV line already in my arm.  They had a system wherein one of them spoke with me, distracted me, while the other performed the intricate mechanical maneuvers.  I had the thought that this must be how animals feel, in the moments before they are expertly slaughtered, never having quite enough time to figure out what it is that’s being done to them.

My mother and father were in the room with me.  We were all extremely apprehensive about the procedure about to take place.  On one hand, it was a very welcome event to be getting started in the treatment of the leukemia.  On the other hand, we were quivering in nervous anticipation of all the worst side effects that might be right around the corner.  We could have guessed about the nausea and the vomiting that would follow.  No one had to tell me that my hair would fall out.  But what we’d learned about the mechanics of the treatment itself was a frightening shock to all of us.

The chemotherapy agents would be administered over four consecutive days.  These drugs, one of them called Ara-C (not a bad name for a sports drink, I thought), and the other 4-DMDR (a character from the
Star Wars
trilogy?), would severely damage my bone marrow and all blood-making capabilities, wiping out most of my immune system.  For that reason, it was expected that I would almost certainly become extremely ill, fairly quickly, with an infection caused by whatever organism got to me first.  At that time the doctors would try to make an accurate diagnosis and administer antibiotics before the infections overwhelmed my organs.

Less serious, but more immediately on our minds, was the nurses’ repeated caution to
immediately
tell them if I experienced any burning or tingling sensations while the drugs were being given.  This was thanks to Dr. Zweig’s imposing recommendation, delivered as an already-made decision, that it would be best for me to receive my chemotherapy, all transfusions, all medications, all electrolyte infusions, through single IV lines inserted into veins in my arms.  These lines were plugged in using needles, by IV nurses who made regular rounds, and lasted no more than two or three days before they had to be replaced with a new needle.  These same lines were used to draw blood, though not very effectively.  Trying to draw blood from one of these peripheral lines often caused a blow-out of the vein, which then required a fresh stabbing to draw blood, as well as another puncture to get a new IV line going.

The alternative to this was to have a Broviac catheter implanted into my chest.  This was a permanent tube, one end of which would be inserted into a vein in my neck.  The other end of the tube would then be tunneled under my skin until it poked out a small hole in the chest area.  The tube then branched off into two smaller ones, and, with two little rubber ports plugged on the ends for sticking the needles into; no more stabbings!  Almost all the patients on the floor had these access lines in, and seemed relieved to have them.  They and the nurses gave me odd glances when I said that I was going to have my chemo on my arms alone, but Dr. Zweig told me that there would be no problem, that those access lines could get infected, and why increase the risk?  Not yet knowing the unusual level of discomfort this portended, even within the harsh context of chemotherapy treatment, I consented to be treated with a minimum of risk, and with a maximum of pain.