We heard from him a few days later when we were in Austin, Texas. He was troubled. There clearly was some lab mixup. The analysis showed the blood of a very sick person. “Please,” he urged, “get retested right away.” I did. There had been no mistake.
My red cells, which carry oxygen all over the body, and my white cells, which fight disease, were both severely depleted. The most likely explanation: that there was a problem with the stem cells, the common ancestors of both white and red blood cells, which are generated in the bone marrow. The diagnosis was confirmed by experts in the field. I had a disease I had never heard of before, myelodysplasia. Its origin is nearly unknown. If I did nothing, I was astonished to hear, my chances were zero. I’d be dead in six months. I was still feeling fine—perhaps a little lightheaded from time to time. I was active and productive. The notion that I was on death’s doorstep seemed like a grotesque joke.
There was only one known means of treatment that might generate a cure: a bone marrow transplant. But that would work only if I could find a compatible donor. Even then, my immune system would have to be entirely suppressed so the donor’s bone marrow wouldn’t be rejected by my body. However, a severely suppressed immune system might kill me in several other ways—for example, by so limiting my resistance to disease that I might fall prey to any passing microbe. Briefly I thought about doing nothing and waiting for the advance in medical research to find a new cure. But that was the slimmest of hopes.
All our lines of research as to where to go converged on the Fred Hutchinson Cancer Research Center in Seattle, one of the premier institutions for bone marrow transplant in the world. It is where many experts in the field hang their hats—among them E. Donnall Thomas, the winner of the 1990 Nobel Prize in Physiology and Medicine, for perfecting the present techniques of bone marrow transplantation. The high competence of doctors and nurses, the excellence of the care, fully justified the advice we were given to be treated at “the Hutch.”
The first step was to see if a compatible donor could be found. Some people never find one. Annie and I called my only sibling—my younger sister, Cari. I found myself allusive and indirect. Cari didn’t even know I was ill. Before I could get to the point, she said, “You got it. Whatever it is … liver … lung.… It’s yours.” I still get a lump in my throat every time I think of Cari’s generosity. But there was of course no guarantee that her bone marrow would be compatible with mine. She underwent a series of tests, and one after another, all six compatibility factors matched mine. She was a perfect match. I was incredibly lucky.
“Lucky” is a comparative term, though. Even with the perfect compatibility, my overall chances of a cure were something like 30 percent. That’s like playing Russian roulette with four cartridges instead of one in the cylinder. But it was by far the best chance I had, and I had faced longer odds in the past.
Our whole family moved to Seattle, including Annie’s parents. We enjoyed a constant flow of visitors—grown-up children, my grandson, other relatives and friends—both when I was in the hospital and when I was an outpatient. I’m sure that the support and love I received, especially from Annie, tilted the odds in my favor.
—
There were, as you might guess, many scary aspects. I remember one night, on medical instructions, getting up at 2 A.M. and opening the first of 12 plastic containers of busulfan tablets, a potent chemotherapeutic agent. The bag read:
CHEMOTHERAPY DRUG
BIOHAZARD BIOHAZARD
TOXIC
Dispose of as BIOHAZARD
One after another, I popped 72 of these pills. It was a lethal amount. If I was not to have a bone marrow transplant soon after, this immune suppression therapy by itself would have killed me. It was like taking a fatal dose of arsenic or cyanide, and hoping that the right antidote would be supplied in time.
The drugs to suppress my immune system had a few direct effects. I was in a continuous state of moderate nausea, but it was controlled by other drugs and not so bad that I couldn’t get some work done. I lost almost all my hair—which, along with a later weight loss, gave me a somewhat cadaverous appearance. But I was much buoyed when our four-year-old son, Sam, looked me over and said: “Nice haircut, Dad.” And then, “I don’t know anything about you being sick. All I know is, you’re gonna get better.”
I had expected the transplant itself to be enormously painful. It was nothing of the sort. It was just like a blood transfusion, with my sister’s bone marrow cells on their own finding their way to my own bone marrow. Some aspects of the treatment were extremely painful, but there’s a kind of traumatic amnesia that happens, so that when it’s all over you’ve almost forgotten the pain. The Hutch has an enlightened policy of self-administered antipain drugs, including morphine derivatives, so that I could immediately deal with severe pain. It made the whole experience much more bearable.
At the end of the treatment, my red and white cells were mainly Cari’s. The sex chromosomes were XX, instead of the rest of my body’s XY. I had female cells and platelets circulating through my body. I kept waiting for some of Cari’s interests to assert themselves—a passion for riding horses, say, or for seeing half a dozen Broadway plays at one clip—but it never happened.
Annie and Cari saved my life. I’ll always be grateful to them for their love and compassion. After being released from the hospital, I needed all sorts of medical attention, including drugs administered several times a day through a portal in my vena cava. Annie was my “designated caregiver”—administering medication day and night, changing dressings, checking vital signs, and providing essential support. People who arrive at the hospital alone are said, understandably, to have much poorer chances.
I was, for the moment, spared because of medical research. Some of it was applied research, designed to help cure or mitigate killer diseases directly. Some of it was basic research, designed only to understand how living things work—but with ultimate unpredictable practical benefits, serendipitous results.
I was spared also by the medical insurance provided by Cornell University and (as a spousal benefit via Annie) by the Writers Guild of America—the organization of writers for movies, television, etc. There are tens of millions in America without such medical insurance. What would we have done in their shoes?
In my writings, I have tried to show how closely related we are to other animals, how cruel it is to inflict pain on them, and how morally bankrupt it is to slaughter them to, say, manufacture lipstick. But still, as Dr. Thomas put it in his Nobel Prize lecture, “The marrow grafting could not have reached clinical application without animal research, first in in-bred rodents and then in out-bred species, particularly the dog.” I remain very conflicted on this issue. I would not be alive today if not for research on animals.
So life returned to normal. Annie and I and our family returned to Ithaca, New York, where we live. I completed several research projects and did the final proofing of my book The Demon-Haunted World: Science as a Candle in the Dark. We met with Bob Zemeckis, the director of the Warner Brothers movie Contact, based on my novel, for which Annie and I had written a script and were now coproducing. We began negotiating on some new television and movie projects. I participated in the early stages of the encounter with Jupiter of the Galileo spacecraft.
But if there was one lesson I keenly learned, it is that the future is unpredictable. As William John Rogers, cheerfully penciling his postcard in the brisk air of the North Atlantic, ruefully discovered, there is no telling what even the immediate future holds. And so, after being home for months—my hair growing back, my weight back to normal, my white and red cell counts in the normal range, and me feeling absolutely splendid—another routine blood test took the wind out of my sails.
“I’m afraid I have some bad news for you,” the physician said. My bone marrow had revealed the presence of a new population of dangerous, rapidly reproducing cells. In two days, the whole family was back in Seattle. I’m writing this chapter from my hospital bed at
the Hutch. Through a new experimental procedure, it was determined that these anomalous cells lack an enzyme that would protect them from two standard chemotherapeutic agents—chemicals I hadn’t been given before. After one round with these agents, no anomalous cells could be found in my marrow. To mop up any stragglers (they can be few but very fast-growing), I’ve had two more rounds of chemotherapy—to be topped off with some more cells from my sister. Once more, it seemed, I had a real shot at a complete cure.
We all have a tendency to succumb to a state of despair about the destructiveness and shortsightedness of the human species. I’ve certainly done my share (and on grounds I still consider well-based). But one of the discoveries of my illness is the extraordinary community of goodness to which people in my situation owe their lives.
There are more than 2 million Americans in the National Marrow Donor Program’s volunteer registry, all willing to submit to a somewhat uncomfortable marrow extraction to benefit some unrelated perfect stranger. Millions more contribute blood to the American Red Cross and other blood donor institutions for no financial reward, not even a five-dollar bill, to save an unknown life.
Scientists and technicians work for years—against long odds, often for low salaries, and never with a guarantee of success. They have many motivations, but one of them is the hope of helping others, of curing diseases, of staving off death. When too much cynicism threatens to engulf us, it is buoying to remember how pervasive goodness is.
Five thousand people prayed for me at an Easter service at the Cathedral of St. John the Divine in New York City, the largest church in Christendom. A Hindu priest described a large prayer vigil for me held on the banks of the Ganges. The Imam of North America told me about his prayers for my recovery. Many Christians and Jews wrote me to tell about theirs. While I do not think that, if there is a god, his plan for me will be altered by prayer, I’m more grateful than I can say to those—including so many whom I’ve never met—who have pulled for me during my illness.
Many of them have asked me how it is possible to face death without the certainty of an afterlife. I can only say it hasn’t been a problem. With reservations about “feeble souls,” I share the view of a hero of mine, Albert Einstein:
I cannot conceive of a god who rewards and punishes his creatures or has a will of the kind that we experience in ourselves. Neither can I nor would I want to conceive of an individual that survives his physical death; let feeble souls, from fear or absurd egotism, cherish such thoughts. I am satisfied with the mystery of the eternity of life and a glimpse of the marvelous structure of the existing world, together with the devoted striving to comprehend a portion, be it ever so tiny, of the Reason that manifests itself in nature.
POSTSCRIPT
Since writing this chapter a year ago, much has happened. I was released from the Hutch, we returned to Ithaca, but after a few months the disease recurred. It was much more grueling this time—perhaps because my body was weakened by the previous therapies, but also because this time the pretransplant conditioning involved whole body X-irradiation. Again, my family accompanied me to Seattle. Again, I received the same expert and compassionate care at the Hutch. Again, Annie was magnificent in encouraging me and keeping my spirits up. Again, my sister, Cari, was unstintingly generous with her bone marrow. Again, I was surrounded by a community of goodness. At the moment I write—although perhaps it will have to be changed in proof—the prognosis is the best it could possibly be: All detectable bone marrow cells are donor cells, XX, female cells, cells from my sister. Not one is XY, host cells, male cells, cells that nurtured the original disease. People survive years even with a few percent of their host cells. But I won’t be reasonably sure until a couple of years have passed. Until then, I can only hope.
Seattle, Washington
Ithaca, New York
October 1996
EPILOGUE
With characteristic optimism in the face of harrowing ambiguity, Carl writes the final entry in a prodigious, passionate, daringly transdisciplinary, and astonishingly original body of work.
Mere weeks later, in early December, he sat at our dinner table, regarding a favorite meal with a look of puzzlement. It held no appeal. In the best of times, my family had always prided itself on what we call “wodar,” an inner mechanism that ceaselessly scans the horizon for the first blips of looming disaster. During our two years in the valley of the shadow, our wodar had remained at a constant state of highest alert. On this roller coaster of hopes dashed, raised, and dashed again, even the slightest variation in a single particular of Carl’s physical condition would set alarm bells blaring.
A beat of a look passed between us. I immediately began spinning a benign hypothesis to explain away this sudden lack of appetite. As usual I was arguing that this might have nothing to do with his illness. It was merely a fleeting disinterest in food that a healthy person might not even notice. Carl managed a little smile and just said, “Maybe.” But from that moment on he had to force himself to eat and his strength declined noticeably. Despite this, he insisted on fulfilling a long-standing commitment to give two public lectures later that week in the San Francisco Bay area. When he returned to our hotel after the second talk, he was exhausted. We called Seattle.
The doctors urged us to come back to the Hutch immediately. I dreaded having to tell Sasha and Sam that we would not be returning home to them the next day as promised; that instead we would be making yet a fourth trip to Seattle, a place that had become to us synonymous with dread. The kids were stunned. How could we convincingly calm their fears that this might turn out, as it had three times before, to be another six-month stint away from home or, as Sasha immediately suspected, something far worse? Once again I went into my cheerleading mantra: Daddy wants to live. He’s the bravest, toughest man I know. The doctors are the best the world has to offer.… Yes, Hanukkah would have to be postponed. But once Daddy was better …
The next day in Seattle, an X ray revealed that Carl had a pneumonia of unknown origin. Repeated tests failed to turn up any evidence for a bacterial, viral, or fungal culprit. The inflammation in his lungs was, perhaps, a delayed reaction to the lethal dose of radiation that he had received six months before as preparation for the last bone marrow transplant. Megadoses of steroids only compounded his suffering and failed to repair his lungs. The doctors began to prepare me for the worst. Now, when I ventured out into the hospital hallway, I encountered a whole different species of expression on the too familiar faces of the staff. They either winced with sympathy or averted their eyes. It was time for the kids to come west.
When Carl saw Sasha it seemed to effect a miraculous change in his condition. “Beautiful, beautiful, Sasha,” he called to her. “You are not only beautiful, but you also have enormous gorgeousness.” He told her that if he did manage to survive it would be in part because of the strength her presence had given him. And for the next several hours the hospital monitors seemed to document a turnaround. My hopes soared, but in the back of my mind I couldn’t help notice that the doctors didn’t share my enthusiasm. They recognized this momentary rallying for what it was, what they call an “Indian summer,” the body’s brief respite before its final struggle.
“This is a deathwatch,” Carl told me calmly. “I’m going to die.” “No,” I protested. “You’re going to beat this, just as you have before when it looked hopeless.” He turned to me with that same look I had seen countless times in the debates and skirmishes of our twenty years of writing together and being wildly in love. With a mixture of knowing good humor and skepticism, but as ever, not a trace of self-pity, he said wryly, “Well, we’ll see who’s right about this one.”
Sam, now five years old, came to see his father for one last time. Although Carl was by now struggling for breath and finding it harder to speak, he managed to compose himself so as not to frighten his little son. “I love you, Sam,” was all he could say. “I love you, too, Daddy,” Sam said solemnly.
Contrary to the fantas
ies of the fundamentalists, there was no deathbed conversion, no last minute refuge taken in a comforting vision of a heaven or an afterlife. For Carl, what mattered most was what was true, not merely what would make us feel better. Even at this moment when anyone would be forgiven for turning away from the reality of our situation, Carl was unflinching. As we looked deeply into each other’s eyes, it was with a shared conviction that our wondrous life together was ending forever.
—
It had begun in 1974 at a dinner party given by Nora Ephron in New York City. I remember how handsome Carl was with his shirtsleeves rolled up and his dazzling smile. We talked about baseball and capitalism and it thrilled me that I could make him laugh so helplessly. But Carl was married and I was committed to another man. We socialized as couples. The four of us grew closer and we began to work together. There were times when Carl and I were alone with each other and the atmosphere was euphoric and highly charged, but neither of us made any sign to the other of our true feelings. It was unthinkable.
In the early spring of 1977, Carl was invited by NASA to assemble a committee to select the contents of a phonograph record that would be affixed to each of the Voyager 1 and 2 spacecraft. Upon completion of their ambitious reconnaissance of the outermost planets and their moons, the two spacecraft would be gravitationally expelled from the Solar System. Here was an opportunity to send a message to possible beings of other worlds and times. It could be far more complex than the plaque that Carl and Carl’s wife, Linda Salzman, and astronomer Frank Drake had attached to Pioneer 10. That was a breakthrough, but it was essentially a license plate. The Voyager record would include greetings in sixty human languages and one whale language, an evolutionary audio essay, 116 pictures of life on Earth and ninety minutes of music from a glorious diversity of the world’s cultures. The engineers projected a one-billion-year shelf life for the golden phonograph records.