Time on Fire: My Comedy of Terrors (12 page)

My way of navigating these treacherous waters was to become, for the first time in my life, a criminal of sorts.  I knew that there was another blood lab, on another floor, intended for use only for the blood drawn from inpatients of the hospital.  Since the authorization slips used to instruct that lab were identical to those used in the outpatient clinic,  I would check into the clinic, take one of the blood forms, forge the doctor’s signature, and take it to the other blood lab.  There, though I’d get some funny looks, I would get the technicians to draw my blood, run the tests quickly, and hand me the results.  If the blood count results  were what I knew they should be and I had no other immediate complaints, I’d skip the doctor visit and I’d go home.  If I saw the results indicated that I would need a transfusion, I’d go back up to the clinic and pester the doctors and nurses dashing from room to room until I got one of them to stop and write out the orders for the transfusion blood.  That way, by the time I got in to see the doctor for my official appointment, the blood would be arriving at the transfusion room, where I would be sent to receive it.  This was how I would cut out three or four hours from my day.  Three or four hours of sitting in a giant room with two hundred other sick people, waiting for a doctor to take me into a room and read the same numbers that I’d read off the computer printout myself.

At times I would wonder if I might be contributing to some of the problems of the hospital by doing this.  Was I compromising someone else’s care by manipulating the system this way?  I didn’t let those thoughts bother me for very long.  I saw myself as I imagined my ancestors must have been, vying for a job on the food line of a concentration camp.  That stolen carrot, those two extra crusts of bread, could mean the difference between life and death.  I saw my time, those precious two hours, three hours, of time, and the energy that went into them — for resting; for making love; for living — as every bit as essential to my survival as those scraps of food.  So I became a thief.  I collected stolen moments, in the hope that they might add up to an extra day, an extra week, until the liberation.

When I finally got in to see Zweig on that particular day, he was even more distracted and dismissive than usual.

“This is what you came in about?”  he said.  “This?  This?  It’s a rash!”

“I know it’s a rash.  But it came out of nowhere.  And I’ve got a fever.  I got the rash and a low grade fever at the same time.”

“What’s your temperature?”

“About a hundred.”

“A hundred?  A hundred and what?  I thought you said you had a fever!”

It’s amazing what fear can make you put up with.  Fear and ignorance, neither of which I was used to being the victim of.  I didn’t know at the time that a drug rash can occur days, or even weeks, after a patient has completely stopped taking a medication.  I learned it that day, though.  And I also didn’t know that a frightened, sick young man and his family don’t have to be grateful for the abusive attentions of a seemingly troubled man, no matter what kind of an M.D. he holds or how prized is his specialty.  But Dr. Zweig taught me that, too.  And now that I had learned my lessons, it was time to find myself a doctor who hadn’t developed what appeared to be such a deep hatred of the people needing his help.

Not that anyone at that hospital was going to make it easy.  I scheduled an appointment to meet for a consultation with a Dr. Elizabeth Klaus.  If my visions of myself as a reincarnated Jew fighting persecution by vicious Nazis in an elaborate scheme for my destruction needed any reinforcement, Elizabeth Klaus was the perfect choice to help.

Dr. Klaus was a hefty woman who spoke with a thick German accent, and whose voice rasped as the result of a deeply committed relationship with a pack of cigarettes, which I rarely saw her without.  I don’t know why they were visible; the doctors’ coats had pockets.  But she would routinely either have them in her hand when she entered a room or take them out of her pocket and place them, with her keys, on the table between us.  It was as if she was making a defiant proclamation.  “Here, Cancer Patient.  See the doctor.  She has no fear!”

I was being coached, through all of this, by the psychiatrist that I was seeing, Dr. Yehuda Nir.  As a result of his own experience at Sloan-Kettering, Dr. Nir had already proven invaluable with his advice on how to best  handle the inflated egos of the doctors and how to gain access to the few advantages of the hierarchical systems of the hospital.  In shopping for a new doctor, I was warned, beware.

“They will love to hear everything bad you have to say about Zweig,” Dr. Nir advised me.  “They will want all the dirt, so they can use it for themselves later.  Then, they will turn on you.  Once they hear what you have to say, they will do everything they can to protect him and to punish you for attacking him.  Say nothing but ‘Dr. Zweig and I have different ways of communicating, and I find it difficult to talk with him.  I need a doctor whom I can communicate with.’”

“But how can I find a doctor that I like if I don’t really tell them what I’m looking for?  I want someone who will understand all the other things that I’m doing.  The healings, nutrition, the – ”

“You won’t find it there.  You find a way to use them as best you can.  You will know if you’ve found a doctor you can use.  You don’t have to tell them about yourself.  They can’t handle it.”

Inside I laughed at Dr. Nir.  We had begun to work together only about three months earlier, but I was already impressed with the way his estimation of his fellow humans consistently fell well below my own.  I think Yehuda Nir was the first person I ever met that I could describe as being more suspicious and jaded than myself.  But one of the problems I was having in my therapy, in trying to view the world as a less hostile environment, had a lot to do with how often his bleak view seemed to be right on target.

At my consultation with Elizabeth Klaus, it was as if my therapist had written the script.  First, she wanted to know if I’d told Zweig that I was seeing her.  I told her that I hadn’t, that at that point it didn’t seem necessary.  Then she wanted to hear every complaint that I had about him.  She pried, she schmoozed, she coaxed, and she joked.  She smiled knowingly and told me she understood how hard it could be.  I stuck to my story: we have trouble communicating.

“What kind of trouble?”  she asked.  “I can’t help you if you don’t tell me what the problem is.”

It had become a battle of wills, it seemed.  It was too perfect.  I thought I must be creating this scenario out of my own expectations.  My psychiatrist had prepared me to anticipate defeat, and that was what I had brought upon myself.  I decided to break character and give her a chance.  I pulled back the veil a quarter of an inch and let her in.  No sooner had I shared with her one of the many instances of Zweig’s insensitivity than Elizabeth Klaus cut me off and said, “Well, that’s just ridiculous.  Dr. Zweig is a fine doctor, and I don’t see what the problem could be.  I think that you’re going through a very difficult time, I can see by your chart that you’re not doing as well as you were a couple of months ago, and I think that you’re overreacting.  There’s no need to take out your troubles on Dr. Zweig.”

I sat very still and I stared at Elizabeth Klaus.  I sat no more than eighteen inches away from her, but I allowed myself to examine her as if she were not a person but a specimen.  Time seemed to slow down around me, while  my mind raced and I pondered my next move.  Then, the little voice inside my head that keeps me company all day long started talking.  The voice said, “If you ever try to tell anyone about this, they’ll never believe you.  They’ll think you’ve become completely paranoid.  If anyone ever told
you
about this, you wouldn’t believe
them
.  I’m here, right here where it’s happening, and I can’t believe it.”

The next day, my phone rang at home.  It was Dr. Zweig.  He demanded to know why I had met with Elizabeth Klaus.  Not only was I surprised that my visit with her hadn’t been protected by a rather honored regulation known as doctor/patient confidentiality, but I also quickly gleaned that Zweig was enraged.  He launched into a monologue that I listened to in wonder.

“I mean, okay, you had a rash.  You had a rash, and if I didn’t give you, uh, the uh, the proper amount of sympathy to please you, well, I…I apologize for that.  I suppose.  Although I don’t know what I’m supposed to do about a rash, anyway.  I mean, we’ll…we’ll…we’ll get you a prescription, if that’s what you want.  But nowadays it’s just, well, obviously, it’s always the doctor’s fault.  I mean, I accept that.  With all the malpractice suits going on now, well…the doctor is always the monster.  That’s the way it seems to be, and I’ll just have to live with that.  Because, okay, okay, the patient dies.  So?  So?  That makes me a monster?  The patient died.  If that makes me a monster, so be it.  I just want you to know that I’m still willing to treat you.  I’ve thought about it and I’ve decided that I’m still perfectly willing to remain as your physician. The fact that you consulted with another doctor…nothing that has transpired will alter my ability to treat you.”

“Except your fucking
INSANITY
!”  I wanted to yell.  I couldn’t see how anyone who was not losing his mind could find it remotely appropriate to phone a twenty-four-year-old man in grave danger of dying of leukemia and plead for sympathy about some other patient who had died.  A man earning, probably, over two hundred thousand dollars a year; who leaves his patients in the hospital each night, alone, while he goes home to his wife, or his lover, or whomever he chooses; who chooses, once again, the next morning, to return to the hospital, or to quit, or to go into advertising, or whatever he wants to do!  Who has his health, and therefore all the freedom anyone could ever wish to have.  He called me on the phone and told me that he was still willing to be my physician.

I remembered the way my father had looked after his first phone conversation with Dr. Zweig.  I could feel my body shrinking into the same submissive pose.  I was sitting on the floor of my apartment, trembling, with tears running down my face.  But I summoned up all my courage, and, borrowing my father’s deceptively controlled telephone voice, I spoke for both of us.  I said, “I appreciate that, Dr. Zweig.  I would like you to continue.  I will continue to see you in the clinic for the next two weeks while I continue to meet with other doctors.  When I make my decision as to who my new doctor will be, then I will let you know and you can arrange to have my records transferred to them.”

“Okay, Mr. Handler.  I’ll see you in clinic then.”  And he was off the phone.

I found a new doctor quickly, and though we still saw each other often, in and around the hospital, I never exchanged another word with Dr. Leonard Zweig.

And I never did get anything for that rash.

* * *

As I prepared to enter the hospital for the third, and final, round of chemotherapy, I was armed with a new doctor, and an excitement that came from the feeling that the end of the nightmare was near.  My new doctor was Jesselyn Melman, a woman who wore a soft cushion of friendliness over her otherwise officious demeanor.  Compared with Zweig and some of the others I had met so far, Dr. Melman seemed like a blessing sent from heaven.

During the previous two months my mother had continued to gather all kinds of information about other treatment centers in this country.  In fact, my parents had both succeeded, in spite of my constant efforts to find fault with and exclude them, at finding many ways to be truly helpful.  Not only had they continued to maintain their stalwart schedule to meet my everyday needs – by bringing me food when I was in the hospital and endlessly shopping for and laundering the seven sets of bedclothes I sweated through nightly – but they had also put together the Evan Handler Recovery Fund, the organization overseen by my aunt and a family friend that solicited donations to offset my living expenses while I remained unable to support myself.  Also within the fund’s domain were the medical costs that outdistanced my extensive, yet still insufficient, insurance coverage.  With a steady stream of friends, business associates, and relatives, my parents had continued to keep the blood-donor room jumping as well, making sure that for every pint withdrawn for me, at least a quart was put back in.

In an even more extraordinary development, they had begun to distribute a newsletter describing my progress as well as the stresses they were under.  Whoever called them at home, during the few hours they had to rest themselves, was thanked for their concern and put on the mailing list.  While a few old friends mentioned this newsletter to me with narrowed eyes that suggested their suspicion that my parents were cracking under the strain, I saw it as a brilliant device.  The exhaustion that is unavoidable to a parents of a sick child, even an adult child, is enough to overwhelm the strongest individual.  The hidden demands, one of which is the exertion of energy necessary to respond to people’s well-meant and desired inquiries and good wishes, can be the straw that breaks their backs.  When some of the well-wishers’ eyes glaze over, in a clear indication that they really never intended their offers of compassion to be seized, the heart can break as well.  My parents were simply accepting the offers coming forth and sharing their burden in a fashion that didn’t increase their already superhuman load.  By revealing themselves in the newsletter, both the good news and the bad, they gave their friends the option of tuning in or tuning out, without having to suffer the indignity of facing those who could not cope with what my parents dealt with daily.

Among the information my mother had gathered were often conflicting reports of what was the best course of treatment for someone in my position.  All the experts had their own opinions, and many of them would warn against using anyone’s advice other than their own.  Others, though, might be quite gracious, and simply say that there were drastically differing opinions on the matter.  This information, while very helpful and necessary to wade through, could lead to agonizing decisions.  For instance, I learned through my mother that doctors at one highly respected hospital had told her that there was no evidence to support there being any benefit from having a third round of chemotherapy.  No one had been able to demonstrate that another tour through hell would actually have an effect on my chances for long-term survival.