Time on Fire: My Comedy of Terrors (16 page)

“Cool moss.  Cool moss.  Cool moss.”

Jack, one of the instructors, was cooing into the ear of a young, blond woman — our visiting fire walk specialist.  She was standing, as we all were, barefoot in the cool, wet grass.  I was stationed several feet back from the heat of the ember-filled trench, while our demonstrator was perched at the near edge of the rectangle.  After a few minutes, the blond woman, her eyes closed, began chanting along with Jack.  Their voices melded into a soothing mantra.

“Cool moss.  Cool moss.  Cool moss.”

As Jackie and I giggled, with Jack holding one of the blond woman’s elbows and Barbie, across the bed of coals, holding the other, they took off and walked her briskly, but deliberately, through the center of the length of the trench.  Back on the grass at the other end, she quickly wiped her feet in the dewy green blades, to make sure no coals clung to them, and jumped up and down, shrieking with enthusiasm and exaltation.

“Oh!  I wanna go again.  I wanna go again,” she said.

I stood rooted to my spot, my gaze fixed on the path she had walked.  I ignored her celebration, and I stared at the trench filled with coals.  I had watched them build the bonfire about ten feet away.  I had watched them carry the hot coals in shovels from the base of that fire to fill the trench.  I had been present for the entire time they waited for the coals to turn from bright red to gray, but by no means had they cooled down much.  I could still feel their heat from several feet away, and whenever the wind blew, the coals still managed to glow a deep orange-red in response.  My mind raced to supply acceptable explanations for what I’d seen.  The first to rush into my head was that Jack and Barbie had carried the woman across.  While posing simply as “spotters,” they had actually supported her weight.  But I had watched carefully, and I had seen the woman’s feet sink into the coals with each step, causing an unmistakable imprint as the embers were pushed down and to the sides.  I had watched her weight provoke the clouds of sparks that had wrapped themselves around her ankles.  Then I thought about her feet.

“I bet the bottom of her feet are callused,” I said to Jackie.  “She does this all the time, and the bottoms of her feet are probably scorched into hard leather.”  And then I watched Jack walk through the coals.  And then I watched Barbie.  And then they turned to us.

“Anyone else want to try?”  we were asked.

Are they crazy, I thought.  This is the most irresponsible thing I’ve ever seen.

During the course of the week, the frailties of most of the seminar participants had become clear.  While we might have been able to pull off the appearance of strength for an afternoon or so, over the length of our stay most of the folks had fallen prey to some bout of not feeling terribly well.  I couldn’t believe that these people were being encouraged to attempt something that was so obviously dangerous.  I also couldn’t imagine who would take them up on their offer.  When Donna, the wig woman, stepped forward, I was flabbergasted.

Donna had come to the center very shortly after having been treated for ovarian cancer.  She was clearly the next youngest participant to me, although I would have guessed her to be about ten years older than I was.  Donna had spent the week quietly, often appearing to be weak and, at times, complaining of nausea from her last chemotherapy treatment.  She was the last person I would have expected to walk across a fifteen-foot bed of glowing hot coals.

But I understood her desire.  In the desperate situations we all shared, we were searching for any advantage we could find.  We had just spent a week convincing ourselves that expanding our beliefs would be to our benefit, and here was an opportunity to blow old belief systems apart with the force of an atom bomb.  If we could control our bodies to the point where 850 degree coals didn’t burn our flesh simply by imagining we were strolling through a patch of “cool moss…cool moss…cool moss,” what could a few errant cells do to us?  The opportunity to prove our dominance over the bodies that were betraying us was as tempting as if someone had offered a swallow of curing serum.  As Donna lined herself up, nervous and giggling, I pushed my way right to the edge of the pit, wanting to inhale her triumph, should she make it to the other side.

Jack coached her in one ear, Barbie in the other.  “Okay, Donna,” Jack said.  “Just close your eyes and imagine you’re standing in a patch of cool moss.  That’s all you have to think about, what your feet are feeling.”

Barbie picked up her cue.  “Donna, just tell yourself that all you will feel for the next few minutes is cool moss under your feet.  Say it with us now.  Okay, Donna?  Say it with us.”

I stood watching the three of them.  Donna had her eyes closed, and Jack and Barbie were feeding their voices into her ears like two birds regurgitating food into the beaks of their blind chicks.  Then they all chanted together, “Cool moss.  Cool moss.  Cool moss.”

Donna stood poised on the brink a bit longer than the previous walkers had, but eventually, much to my own amazement, she plunged in and forged ahead.  She tromped her way through the coals and out the other side.  This time, as she whooped and celebrated back in the grass, so did everyone else in the group.  It was as if she had liberated the rest of us.  Delivered us from having to accept the narrow “factual” realities of our predicaments.  There was no reality any longer, no hard truths, no indisputable facts.  When 850 degree coals don’t burn human flesh, science ceases to be of significance.  Nothing is indisputable, nothing is inevitable, and nothing, nothing, is impossible.

I left the Simonton Center on a terrific high of optimism, tempered with just a touch of chagrin.  Watching Donna, and the few other seminar participants who had made their way across the coals, had swelled the capacity of my receptors to absorb thoughts and ideas I would have previously dismissed as ludicrous.  I felt primed for exploration, determined to seek out more and more similarly mind-expanding experiences until, one day, the example of my life itself would serve as an improbable, though irrefutable, reality for others.  My confidence in the existence of powers beyond those I was practiced in had grown tremendously during the week.  But, even considering the value of that growth, I still had to contend with its limits, and the way that the expansion had ground to a halt.

Before dousing the hot coals with water and extinguishing the hope-spewing embers for the night, Barbie – who, after my initial skepticism, I’d come to appreciate more and more during the week – had tried to convince me to take a turn walking the fire myself.  I was already so captured by the desire to do it that I was hopping up and down on the sidelines, screaming with each successful pass by someone else.  But every time I considered moving over to the starting line, I couldn’t stop thinking of all the logical consequences of the move.  As I said, I had been sprung free from the hospital only about a week before coming to California.  Every imagining of a step off the grass and into the scorched channel brought visions of blistered flesh; of bandages and ointments.  Worst of all, it brought up the possibility of winding up back under the control of doctors and bureaucrats, stripped of all rights and individuality.  No matter how much I wanted to believe what I was seeing; no matter how much I was able to believe what I saw happening to others; whenever I imagined myself stepping away from what I had always held as undeniable, I couldn’t trust in anything else as much as what I had learned from the first twenty-four years of my life – that hot coals burn people.  I had to wonder if an inability to believe that my mind could protect my feet from the fire in Temescal Canyon wouldn’t affect my ability to escape the other one that was still burning all around me.

Just before leaving for the Simonton Center, I had made the decision to remove myself from the experimental protocol study at Sloan-Kettering.  The protocol had called for half the patients to receive what was referred to as “maintenance” chemotherapy.  This meant that, for a period of one year after completing the final course of intensive “consolidation” chemo, half the patients on the study would continue to receive weekly injections of low-level chemotherapy on an outpatient basis.  Theoretically, these injections would not adversely affect the patient’s ability to enjoy life, and might even offer the possibility of extending the length of what was expected to be a limited period of remission.  However, as the treatment was being given experimentally in order to gather statistical results, the only guaranteed beneficiaries of my injections would be the state of medical knowledge and those individuals who followed after me.

Since none of my relatives had proven to be an exact genetic tissue type match to me, there had been no way to perform what was already recognized as the most promising treatment for my leukemia – a bone marrow transplant.  There is about a 25 percent chance of any sibling being an exact match, and, had that been the case, a transplant would have been the recommended treatment as soon as the leukemia went into remission.  The two “consolidation” courses of chemotherapy were routinely given in the absence of a matching relative.  This was what was referred to as “conventional chemotherapy.”

However, recently there had emerged some new, experimental versions of bone marrow transplants that were either already being performed or just becoming visible on the horizon.  We had learned, through research done by my mother, that some medical centers – such as the Fred Hutchinson Cancer Center, in Seattle, and Johns Hopkins Hospital, in Baltimore – were doing what were called “autologous” bone marrow transplants, meaning, transplants using the patient’s own bone marrow.  Fred Hutchinson was investigating transplants using relatives who were not exact tissue type matches or using bone marrow from donors who were not related at all.  My mother, who by now had fully regained her gift for aggressive activism,  had been contacting centers all over the United States, cataloguing their responses, and asking them for recommendations.  She had spoken with dozens of doctors, not only those associated with hospitals, but also those affiliated with alternative therapy centers.  She organized the information onto three-by-five inch index cards and handed me the stack.  After leaving the Simonton Center, I planned to make a trip to Seattle as a way of following up.  I wanted to meet with some of the pioneers of the treatments and hear directly from them what my options were and what their recommendations would be.

Jesselyn Melman, my new doctor in New York, knew of my plans to visit some other medical centers.  Dr. Melman, as opposed to Leonard Zweig, had been willing to spend some time during our visits discussing what I had learned about leukemia and the various treatments available.  Just before leaving for California, when I informed her that I was declining any further treatment, she wasn’t overtly supportive of my decision, but neither was she unsympathetic to it.  Months earlier, when I’d asked questions about the advisability of the second round of consolidation chemo, I’d gotten answers that acknowledged a lack of scientific evidence of benefit.  But, unlike with my current inquiries,  I was told then that the doctors 
suspected
the treatment plan was advisable.  Of course, the doctors couldn’t speak with authority, much less make professional recommendations, based on incomplete results of an unfinished study.  So these variations were the subtleties of response that offered clues into the doctors’ knowledge of how the statistics of a particular study were shaping up.  Had there been any inkling on Dr. Melman’s part that I might have been endangering myself, I felt confident that her response would have been clearly pointed in that particular direction.  I often felt as if Dr. Melman and I were speaking in code.

However, while Dr. Melman was somewhat helpful when it came to answering questions put to her directly, she was not terribly forthcoming with any information that was not explicitly requested.  When I inquired about the Fred Hutchinson Center and its work with monoclonal antibodies; or when I tried to discuss a Johns Hopkins Hospital study that had been published in the
New England Journal of Medicine
, demonstrating a striking level of success after performing more than one hundred autologous transplants on patients with acute myelogenous leukemia in second and third remissions, Dr. Melman only nodded her head politely and complimented me on the thoroughness of my research.  Then she told me that at Sloan-Kettering they would soon be performing their first two such transplants, adding, like an executive loyal to her firm, “And with our transplants, Evan, we’ll be offering radiation!”

A consultation at the Fred Hutchinson Cancer Center in Seattle, Washington, is like spending a day at an all-inclusive holiday resort.  Jackie and I arrived on a Tuesday for our first of several scheduled appointments, this one with a social worker.  We were told there would be a bit of a wait, and we were seated in a small, comfortable waiting room that was filled with children’s drawings outlining the history of their own, or a family member’s, illness.  The space was quiet, except for the sounds of the birds chirping in the trees outside the window, and we were the only people in the room.

When we were welcomed into the social worker’s office, we were given stacks of booklets and written materials.  The woman we met with was round and open-faced, friendly and eager to help.  She outlined for us the length of stay should a transplant be decided upon, and  the philosophies behind the Fred Hutchinson type of care; namely, that the patient and family must be kept together as a cohesive unit even though their lives would be temporarily uprooted, and that the best way to approach these changes was to keep everyone a well-informed participant from beginning to end.  This last aspect of the Hutchinson way was startlingly displayed when we traveled through the building to our appointment with the doctor.  Lining the halls of the medical floors were very large, full-color photographs of patients and facilities.   Some of the pictures were standard long shots of smiling, slipper-clad, baseball-capped bald people.  Most of the pictures, though, were graphic medical journal close-ups of what lay ahead for those enrolled in the program.  There were several photos of the ulcerated lining of a mouth; there were shots of blistering skin lesions; there were photos of patients isolated in protective plastic bubbles, where they had to remain for the better part of two months while their immune systems recovered from the devastation of a bone marrow transplant.  Many of the pictures were not easy to look at or easy to decipher.  The damaged flesh was so distorted that it took several minutes to puzzle out just what the photograph was showing.  For this reason there were explanations posted describing the potential side effects displayed; the frequency of their occurrence; and, of course, the overall statistics for the procedures.  This wall at the Fred Hutchinson Cancer Center most resembled a display in a museum commemorating the victims of war atrocities or of some particularly horrific industrial accident.

When the doctor at Fred Hutchinson, after hearing my history and assessing my plight, began discussing his knowledge of the research being conducted
all around the world
, I was taken aback.  I had come to believe that, in the medical profession, such things simply weren’t done.  My experience as a patient so far had shown me that, while there might be a lot of information out there, access to it was limited and I would have to find my own way in.  Even the
New England Journal of Medicine
itself is difficult to gain access to unless one is a doctor, and no doctor other than my psychiatrist had ever offered to find articles or research papers for me.  The message, as I understood it, seemed to be “Yes, we want you to get well.  But we don’t want anyone but ourselves to get you there, or to get any of the credit for it.”  And so I was even more surprised when the doctor at Fred Hutchinson began talking about the Johns Hopkins study, comparing it favorably to the Hutchinson program for my particular problem, and ended the consultation by saying that, as far as he could tell, Johns Hopkins seemed like the place that could help me the most.  His recommendation was that Jackie and I take one more trip on our fact-finding mission and visit with them there.  When he openly complimented a “rival” institution by saying, “They seem to be doing what you need.  And, hey, you can’t do any better than them,” I wondered if this was a generosity common to the Pacific Northwest or if this doctor happened to be of a particularly radical breed.  We thanked this man with a profusion that had to puzzle him, and we packed up and headed to Baltimore.

Jackie and I visited Johns Hopkins when the hospital was beginning to do autologous bone marrow transplants on patients in first remissions.  Until that point, due to the riskiness of the procedure, transplants were performed only as a last resort on patients who had already relapsed and gained a second, or even a third, remission.  I had come looking for information to help me decide if I should be one of the first to jump right into the transplant arena or take my chances with the 80 percent probability of a recurrence.  At that time we met with a doctor named Rein Saral, who stunned us by graciously inviting us into his office at precisely the agreed-upon hour of our appointment.  After all my travails at Sloan-Kettering, after all the debasing expisodes in their outpatient clinic, this was the first time that I had ever been seen by a doctor without enduring an excruciatingly long wait.

I sat down across a cluttered wooden desk from Dr. Saral and looked up to notice a small framed drawing hanging over the light switch on the wall.  The drawing was a simple rendering of a hammer, poised at an angle suggesting an imminent blow.  The hammer was labeled with the letters “BMT,” and below it, at the bottom of the picture, was the printed message “When all you have is a hammer, everything looks like a nail.”

I repeated the saying in my head a few times while I stared at the picture.  Slowly, through my confusion, I recognized that the letters “BMT” stood for bone marrow transplant.

“Just a little reminder,” Dr. Saral said.  I hadn’t known that he’d noticed me studying the drawing.  “It helps keep us honest.”

“When all you have is a hammer, everything looks like a nail.”  I was astonished.  I was an in-the-flesh, first-person witness to a group of doctors, or, who cares? just one doctor, who framed and hung a cartoon for the purpose of reminding himself to question his own judgment!  I almost laughed out loud right there in his office.  I wanted to run around the desk and hug this man.  I wanted to throw my arms around him and be held.  I turned to Jackie on my left and found her staring back at me with her own expression of wonder.  If the look on my face was anything like hers, it was screaming “Did you see what I just saw?”

We then proceeded to have an unhurried meeting that lasted more than ninety minutes.  Dr. Saral never made any attempts to do anything other than to help give us as much information as possible about all my options for future treatment.  The meeting became an exchange of ideas, as the doctor began to recognize the level of knowledge that Jackie and I shared about leukemia.  In fact, our knowledge seemed to not only impress this man but to inspire him to share more of his own expertise with us.  It wasn’t that he was any more encouraging than anyone else; he had only the same cold, hard facts at his disposal – basically, that my life was probably almost over.  The difference was, those facts didn’t seem to make him want to run away from me.  Just the opposite.  He seemed genuinely eager to help, while openly recognizing that the amount of help available was limited.  In addition, he was quick to acknowledge the difficulty of the decisions that were confronting us and sympathetic to the strain that we were under.

After all the travel, after all the phone conversations and all the reading, it was a simple decision that landed in my lap.  Was I prepared to immediately enter a new hospital for a procedure that might substantially increase my chances for a permanent cure but that carried at least a one-in-five chance of killing me before I ever got out again?  Or, was I ready to dive back into life, with the full knowledge that 80 percent of those in my situation suffer a recurrence of the disease within a short period of time?  I started to weigh the pros and cons of each choice.

If I went to Johns Hopkins and had the transplant right away, should I survive the procedure, I would then be in a group out of which about 50 percent would be expected to remain free from disease.  That meant, with the 20 percent mortality risk of the transplant factored in, the procedure offered, from beginning to end, about a 40 percent chance of a cure.  That seemed a large increase from 20 percent.  In addition, the Hopkins study suggested that almost all recurrences happened within one year of the transplant.  In my present situation, the only way to know if I would turn out to be one of the lucky few who never relapse was to go on living and wait.  After about five years or so, the graph shifts dramatically, and the chances of  relapsing become minute.  That seemed an awfully long time to endure Damocles’ sword hovering over my head.  On the other hand, it was a harsh proposition indeed to think of going into the hospital once again, quite possibly dying there, when I might already be in the group destined to remain well from the treatment I’d already had.  I became obsessed with the numbers and the calculations as I tried to sort out my options.  The mundanity of the statistics I was juggling all day, as opposed to the existential depth of their repercussions, made for one of the most surreal periods of my life.  And it couldn’t have been very easy for the people around me.  A social inquiry as  innocent as “How are you?”, regardless of the company, would often lead to an intricate asessment of my stastistical calculations for my own chance of survival.  When I’d finish my impromptu presentation, the entire group would sag into a stunned silence.  I’d be mortified, silently vowing that in the future I’d keep my problems to myself.  The next day, in front of a different group of friends, I’d repeat the scene all over again.