Nothing Was the Same Nothing Was the Same Read online

  Bob shifted out of silence. He asked Richard to fax him the biopsy results as soon as we got home and to have the pathologist send him any viable cells obtained during the biopsy. He would consult with other scientists and oncologists to find out which experimental protocols might help. His own laboratory had recently synthesized a naturally occurring compound that promoted a form of cell death. He thought it might be possible to use this against proliferating cancer cells. To this end, he proposed growing cells from Richard’s lungs in mice genetically engineered to have no immune system. (These mice were later christened “Little Richards,” and, for a while, the tumors thrived as they should and died as they should. And then they didn’t.) Bob said he would read up on Richard’s particular type of lung cancer, talk with experimental vaccine and gene therapy specialists, and place calls to colleagues at the National Cancer Institute, Dana-Farber at Harvard, M. D. Anderson, and Sloan-Kettering. He would immediately consult with Richard’s oncologist at Hopkins.

  By evening’s end, friendship, wine, and the possibility—the unlikely possibility—that science might outgambit Richard’s cancer gave us enough hope to confront the immediate future. Our friends heartened us; our belief in science kept us from abject despair. It was the beginning of a quest that was to be marked by a thousand acts of kindness and capability from friends, colleagues, and strangers. It was a journey to save Richard, and it took place during an unnerving era in medical science. It was a time when, as now, hope could reasonably exist next to a prognosis of death; a time when the odds of staying alive or dying were whirling, inconstant things; a time when science could suggest, but not guarantee, breathtaking results.

  Our difficulty would be to navigate between false and reasonable hope, and to avail ourselves of new knowledge that might save Richard’s life while, at the same time, keeping close to our hearts the inescapable truth that Richard was likely to die. The truth would be what it would be; it would be what we would have to come to terms with, and it would demand our first commitment. We did not want to send ourselves on a fool’s errand, flying after every new and as yet unproven treatment, but neither did we want to give up and cease to explore possibilities that might save or prolong his life.

  When I look back on those darkly wonderful days of Christmas, I remember the gentleness and love we had for each other, and I can feel still the warmth we took in from friends and colleagues who reached out to us with such generosity. Dread would hit unawares at times, paralyzing us for a moment or an hour. But we found the dread to be as often as not reversible; love and friends, and our awareness of the shortness of the time that we had, worked well enough, often enough, to keep us from drowning. Richard ran his lab meetings from our living room and worked, as ever, into the early morning hours. I burned Christmas cookies, and broke my heart trimming our tree with ornaments we had gathered over the years. I hung the snowflakes made of gingerbread and the glass candy canes on the tree branches, and then added an ugly clay parrot we had gotten at a scientific meeting in Puerto Rico and a half-dozen handblown glass balls from our days together in London. Only the tinsel went onto the tree without my hanging a memory upon it.

  Richard, as he did every year, put the angel on top of the tree. But this year, I had to help him. I felt him, so physically weak, tremble against me, and we looked at each other with alarm. Then we just held each other. Knowing that he was going to die, and knowing how little we knew about what was ahead of us, gave us an intimacy unlike anything we had known before.

  We drove nearly every day through Rock Creek Park, a great and beautiful park less than a block from our house. We looked for deer, which Richard inevitably caught sight of first, and followed the creek as far as we could; we saved the life of a box turtle wandering on the parkway. We found places off the tangled capillary roads of the park that we did not know existed, and knew ourselves freshly beholden to the park’s beauty for what it gave us now that we had not known we needed. A pleasure became a necessity.

  We went one day to our old house in Georgetown, where we had lived for many years; we pulled up outside of it and sat in the car admiring the small pond we had built in the front yard. Building and stocking the pond had been a lesson in our differences, never more apparent than while debating what to do with the pond once the work on it had been completed. We had decided to buy water lilies. This entailed going to a water lily farm in Maryland, the kind of small adventure both of us loved. Neither of us knew anything about water lilies, so Richard described the size of our pond to the salesman, who, while polite, was less than impressed.

  Richard said, “I think one plant will do.”

  “I agree,” said the salesman. “Two would be more than you really need.”

  “She will want at least seven or eight,” Richard said, nodding in my direction. “Why don’t we take three?”

  We drove back to Washington with our three water lily plants on my lap, talking about what we didn’t know about water lilies. There was a silence for a while and then Richard said, “I trust you won’t go overboard with the goldfish?”

  “Of course not,” I said indignantly. “I’ll get only as many as makes sense for the pond.” I looked at Richard, who looked deeply skeptical and then burst out laughing.

  “Right,” he said. “I can only imagine. We’ll be feeding everything in the neighborhood that walks on four feet.”

  I made up in goldfish for what I thought we lacked in water lilies. At least a hundred came to join us. Before two summers passed, the water lilies had taken over the pond and were on the move over the pond’s stone ledge. The fish flourished, despite the occasional electrical storm that left some of them fried and floating.

  One evening, Richard brought a half-eaten goldfish into the kitchen and dangled it in front of my eyes. “Congratulations,” he said. “We’ve created alfresco dining for the raccoons. They eat here, tell their friends, and then take one for the road.” The fish continued to thrive, the raccoons continued to fish in our pond, and I never heard the end of it. Now, years later, I asked Richard if he remembered our trip to buy water lilies and the legions of goldfish I had gotten for the pond. He laughed out loud: How could I not? he said.

  I think, until that moment—sitting in our car in front of our old house with its very small fish pond, watching the snow as it came down in great, beautiful flakes—I had not fully realized how wondrous laughter is, how fortunate we had been to have so much of it, so easily.

  Christmas day was quiet and close. My mother was staying with us, and we had coffee and opened presents in front of the tree; the fireplace, now a source of mordant one-liners from Richard, had been cleaned and worked well. Richard gave me a pair of gold earrings from Newport, Rhode Island, with a note to wear them “in good times and in bad.” In the months, and then the years, to follow, I did exactly that. They became a bellwether of my moods and expectations: an amulet to act against bad days, a glyph of hope or delight during good ones. We had dinners with friends, and drove around our neighborhood looking at lighted Christmas trees in window bays, their joy up against the dark. It was a good Christmas, all things considered.

  We saw in the new year with a finger of whiskey, shortbread, and a shiver of dread.

  Ambinder had turned over Richard’s care to David Ettinger, a Hopkins specialist in lung cancer. He was to prove to be a very good doctor, open to the ideas of the scores of physicians and scientists we consulted from hospitals and laboratories across the country. Two of the scientists we consulted, Jim Watson of Cold Spring Harbor Laboratory and Bob Gallo, director of the Institute of Human Virology at the University of Maryland, had been friends of ours for many years. Jim contacted numerous scientists about their work, tracked down results from clinical trials that had not yet been published, invited me up to Cold Spring Harbor Laboratory to attend meetings on experimental cancer treatments, and introduced us to Judah Folkman at Harvard, whose treatment recommendations Richard and I believed prolonged Richard’s life by many months.


  Bob Gallo, in addition to talking with scores of oncologists, gene therapists, and vaccine researchers, continued to grow—and to try to kill—Richard’s tumor cells in his own laboratory. He also introduced us to Jeff Schlom, a prominent cancer vaccine scientist at the National Cancer Institute, who together with his wife, Kathleen, was unbelievably helpful and kind to Richard and me; they became close friends, in a class by themselves.

  The winter and spring of 2000 came and went and brought with them a generally quiet rhythm to our days. We spent our mornings and afternoons in the room across from our bedroom; it caught the best of the light coming into the house and became a room of our own, private and quiet and undisturbed. Richard worked on his laptop in a chair across from mine, and I read or wrote, did needlepoint, and watched the manuscript pages slowly accumulate for the book I was writing about exuberance—an odd topic, given what we were going through. Richard worked on scientific papers as well as on a short book, Cancer Tales, that he was writing about his experiences with lymphoma and lung cancer. In the evenings, we had dinner with friends or watched movies, or I would read and Richard would disappear into his study to work, often into the early hours of the morning.

  Going to Hopkins for Richard’s appointments with Ettinger usually shattered the calm of our daily world. We were anxious driving there, anxious while we waited, and anxious, if not distraught, once Ettinger had spoken to us. We spent a great deal of time at the hospital. While Richard was getting his bloodwork and scans done, I worked on a needlepoint tapestry of entwining tulips that I cannot, now, bear to look at. Our time in the “infusion” room, where Richard received his chemotherapy, was better, and after a while, it did not seem so alien: Richard listened to Harry Potter books on tape and I read or did my needlework, we held hands, or we talked with other patients and their families.

  Life unfolded, as it will. Richard continued to feel reasonably well during the spring of 2001, although his scans showed slow growth of the tumors in his lungs. At some point, it became clear that the chemotherapy was having no effect, so we pursued experimental treatment options. We spoke to a vaccine expert at Georgetown University, who said that Richard, because of his recent bone marrow transplant, was not eligible for the vaccine trial. If necessary, however, he said he would apply to the National Cancer Institute for a compassionate use waiver. The NCI research protocols made it absurdly difficult for Richard to participate, however: Could he give truly informed consent? This seemed to us to be on the other side of Alice in Wonderland; Richard was a physician and a scientist, he had a terminal illness, and he had conducted clinical studies for thirty years at the National Institutes of Health. If he couldn’t give informed consent, who could?

  Fortunately, our friend Jeff Schlom, who is chief of the tumor immunology lab at the NCI, offered to help Richard with the inordinately complicated application procedure. In the meantime, Richard and Ettinger consulted with Judah Folkman and decided to try his treatment protocol, which was designed to limit the growth of the blood supply to tumors. There were, we were discovering, many options on the cusp of viability. Richard noted wryly that he loved being on the cutting edge of science, even if he turned out to be that edge.

  Richard went through the standard treatments for lung cancer and then the experimental ones. He lived a year longer than had been predicted for his type of disease, a year that was a gift of science and the hard work of people who did everything they could to save Richard’s life. But the tumors in his lungs grew; they grew erratically, sometimes not for weeks or months, but they grew.

  Science and medicine cannot be pushed beyond a certain point. Richard lived longer than initially expected because of the remarkable scientific times in which we live. He died because there are limits to knowledge. We knew these limits well—we saw them every day in studying and treating schizophrenia and depressive illnesses—and we were generally philosophical about them, Richard more so than I. Both of us, in our clinical teaching, had often quoted Sir William Osler, the first physician in chief at Johns Hopkins. “In seeking absolute truth we aim at the unattainable,” Osler had said, but we must be content with “broken portions.” I wanted the unattainable. I wanted Richard to live. I understood the concept of broken portions, but I wasn’t resigned to it.

  The first daffodils came. We drove to the Tidal Basin early in the mornings and took in the cherry blossoms and, on occasion, drove to Theodore Roosevelt Island. Life was often normal, although in some ways more wonderful, as we knew that it was not at all normal. We continued our long drives through Rock Creek Park, usually taking Pumpkin, our basset hound, along and listening to the songs of Stephen Foster and Paul Robeson. These were small, shared passions—the park, the beauty of Washington, Foster and Robeson—and they gave a sustaining happiness to our days.

  That spring, Richard was honored by his colleagues on three different occasions, and each was a source of great pleasure for him. Although the tributes were triggered by his likely death, he did not find them melancholic events. On the contrary, he could not have enjoyed them more. The first, a scientific meeting on schizophrenia, was dedicated to him by the psychiatrists working in Veterans Administration hospitals across the country. In their remarks, his colleagues described him as a “towering” figure in psychiatry, science, and medicine. He reveled in the “towering.”

  To a person, they acknowledged him for his pioneering contributions to understanding the brain and schizophrenia, for improving the treatment of schizophrenia and other psychotic illnesses, and for his generosity as a teacher of young doctors and scientists. At a dinner in his honor, the director of the National Institute of Mental Health, now provost at Harvard, talked about Richard’s groundbreaking work in psychiatry. Then he said, to great laughter, that Richard’s good papers had been published in Science, his rejects in Nature. Richard loved every minute of the conference, as he loved an equally generous and warm day of tributes from his colleagues at Columbia University in New York, where he held a faculty appointment and had collaborated with many of the physicians and scientists.

  The National Institutes of Health paid him the unusual tribute of hosting an all-day scientific symposium in his honor, followed by a dinner at the Army-Navy Club. Many of the world’s most distinguished neuroscientists talked about Richard’s influence on their work. They talked, as well, about his grace and formidable energy, his generosity as a mentor, and his scientific creativity. Richard was deeply moved by these tributes. I rarely saw him cry during the years I knew him, but at one point during the remarks I saw tears that he could not hold back. Respect from one’s peers is not for sale, and Richard, of all people, knew this.

  Richard wrote in Cancer Tales that those days of recognition from his colleagues helped him get through his illness and face the prospect of death. He knew that he was loved; he knew he had made a difference. He believed that everyone has an obligation to give back in life, particularly those who have had advantages. Listening to the heartfelt appreciation of so many of the scientists he had trained or worked with made him believe that he had given back as best he could. He did not write or talk much about death, but during this time of tributes he did:

  Many people think about death every day. Call me shallow—many have—but it is a rare day when I concern myself with my own death. Long ago, I decided that if I paid my debts I would not worry about death. As I was growing up, it occurred to me that I had been very fortunate—I had been given a great deal and owed a large debt. I had been healthy, born and raised in the United States, was well-educated, privileged to go to medical school and finish my training. By the time I was thirty-three years old and developed Hodgkin’s disease, I believed I had performed a sufficient number of good deeds that I had paid back my debts—I might even be even. Being successfully treated for Hodgkin’s left me in the hole again. So I spent the next few years getting myself on the right side of the ledger. Certainly there were many times I did things that hurt others or committed sins of omission, but by my accou
nting I stayed ahead and feel I am still ahead. For me, not being in debt means I do not have to be concerned about death.

  Richard’s views on death were not my own—death to me is unimaginable and horrifying—but he gave me an enviable slant on it.

  RAINING STARS

  Richard and I were given a long Indian summer before he died, a year beyond what we had banked on. After the round of tributes from his colleagues, Richard suggested a vacation in California. We had no talks to give or schedule to keep; we could relax, spend time with family and friends, and enjoy what we had. We could worry later about what was to come. It was a perfect interlude. Richard, who was still in reasonable health, sat on the deck of our family house in Pacific Palisades and worked on his laptop, or slept in the sun. In the mornings, I walked to the bluffs overlooking the Pacific or down to the ocean; in the afternoons I sat on the deck next to Richard and read.

  Everywhere there were the defining scents and colors of Southern California: sweet jasmine, pungent eucalyptus; bougainvillea vines with their hooked thorns and papery blossoms of tangerine and fuchsia. The jarring blue hibiscus. Richard particularly loved the camphor trees, as I did the eucalyptus, so we drove the streets of the Palisades with the car windows open, inhaling and happy. On one of our daily drives, Richard mentioned that camphor had been used centuries earlier to treat mania. He insisted we stop to gather some leaves: “Just in case,” he said with a smile. I told him that camphor sounded better to me than an injection of the antipsychotic he carried in his black bag, so I gathered up an armful of glossy leaves. We put these in a basket to ward off madness and, as he pointed out, from that point onward not only madness, but also moths kept their distance. We saw friends and family, visited with colleagues at UCLA, and at night drove up the twisting streets into the hills behind our house and looked out on the lights of Los Angeles and the unfurling of moonlight over Santa Monica Bay. We made time stop for a while, and knew how lucky we were.