Nothing Was the Same Nothing Was the Same

by Kay Redfield Jamison

  Neither of us slept that night, reaching out for each other, troubled and restless: talking, silent; lights on, lights off; looking through Richard’s old medical textbooks—hopelessly out of date in their discussions of cancer—to find a phrase or a statistic that might dampen the horror for a while. We went through every “What if?” we could imagine—and we could imagine many—and then drew into our collective self, coiled around each other in some ancient mammalian way to fend off desperation.

  The next day was better, in part because it was the day and not the night, and in part because it was not possible for it to be worse. Richard’s preliminary biopsy results offered us some hope, as well; it was possible that Richard had lymphoma, not metastatic solid tumor disease. Lymphoma, in our new world of bad options, was a good thing; it carried the possibility of life. My Hopkins colleagues made an appointment for us to see an oncologist at Hopkins the next day. I will go to my death, as Richard did his, more than willing to walk on broken glass for him.

  Richard Ambinder, the director of hematologic malignancies at Hopkins, took one look at Richard and said, “So. You look sick.” This, in itself, would not have been enough to secure our trust; it was not a penetrating observation. The lucidity and rigor with which he laid out the diagnostic and treatment possibilities, however, and the insistent concern with which he regarded Richard’s rapidly deteriorating condition, did catch our attention. Richard’s MRI scans showed clearly malignant disease, he said, and it was progressing rapidly. If Richard did not get immediate and aggressive treatment, he would die. We had entered the blunt and exquisitely competent world of Ambinder and were relieved to have done so.

  Ambinder said he would consult a Hopkins pathologist and one of his colleagues at the National Institutes of Health (NIH); if it turned out to be a solid tumor malignancy, he did not hold out much hope. If it was Burkitt’s lymphoma, as he thought likely, Richard had a chance. Ambinder grasped Richard’s shoulder and told him that he and the Hopkins staff would take good care of him. He then turned to me and assured me of the same. He took Richard up to the ward himself, talking with him all the while about their research interests and common experiences as medical students at Hopkins. I saw, for the first time in weeks, a trace of animation in Richard’s eyes. I also saw him tap deeply into the trinitarian roots of his true faith: Medicine, Science, and Hopkins.

  Ambinder told us that the pathologist would talk to me later that evening about his diagnostic impressions and suggestions for treatment. Things would get moving; everyone would do what could be done. No grass grew under Ambinder’s feet.

  The pathologist called that night. Richard almost certainly had Burkitt’s lymphoma, he said, and he concurred with Ambinder that if Richard did not start chemotherapy straightaway he would die. His directness, together with his careful description of Richard’s disease and its prognosis, made our decision relatively easy. He and Ambinder did not present an array of complex and competing options. There were no meaningful options besides chemotherapy, and there was no point in wasting time.

  Ambinder had said that if Richard responded to the chemotherapy, he was likely to show a quick and dramatic improvement in his symptoms. This was true. I went to sleep in a chair next to Richard’s bed that night and woke up in the morning to find him smiling at me, revived as from the dead. Not among the quick, perhaps, but a bracing distance from the dead. “I think I like this doctor,” he said. “I think I like him very much.”

  A few weeks after Richard’s dramatic response to chemotherapy, Ambinder recommended that he undergo a peripheral stem cell transplant. Stem cells would be recruited from his bone marrow into his bloodstream, removed, and stored. In order to destroy any remaining cancer cells, he would undergo eight days of very high-dose chemotherapy His previously harvested stem cells would then be transplanted into him through his veins and stimulated to proliferate. In painstaking detail, Am-binder made it clear to us that Richard was a high-risk patient undergoing a high-risk procedure. Death was a distinct possibility. Death was becoming part of what we had to think about.

  Richard was sick for a long time. He lost his hair, retched and vomited in places too many to mention, and became transiently psychotic from steroids. One day, as he put it, he shed his gut like a snake sheds its skin. Anticancer drugs were injected directly into his cerebrospinal fluid. He endured so many uncomfortable and harrowing procedures that what he went through was only partially imaginable to me. Yet he remained imperturbable and wryly engaged with life; he gave patience a good name.

  Richard received a bone marrow transplant in early December of 1999, and then we did what cancer requires one to do: we waited. We waited for the results of blood tests and scans; we waited for the inevitable complications; and, most rackingly, we waited to see if his transplant would produce the cells he needed to stay alive. A normal white cell count is between four thousand and eleven thousand; at one point, Richard’s was thirty. He was more tense during this time than I had ever seen him, keenly aware of the danger if his transplant failed.

  Richard did what I had always known him to do when he was hurt or worried: he turned inward, to his imagination. One day, for diversion, he called up the names of all of the rivers he knew; on other days, it was stars and constellations, or viruses and bacteria. One night, during a particularly difficult time, he reconstructed in his mind, bone by bone, the skeleton of a dinosaur in Chicago’s Field Museum, which he had visited as a child. As his physical health improved, his mind regained its elegant inventiveness. I came into his room one morning to find that he had spent much of the night conjuring up a brain nearly as large as his hospital room and had then set about exploring it. He hiked across its fissures and rappelled his way down the substantia nigra, a part of the brain he had studied and particularly liked. He swam in the brain’s ventricles and bounced up and down on the optic nerve. Richard was on his way back.

  Mostly he slept and I did needlepoint, or I read to him from Sherlock Holmes or from Antoine de Saint-Exupéry’s Wind, Sand and Stars. When he was better, I read to him from Annie Dillard’s Pilgrim at Tinker Creek, a book he had given to me shortly after we met. We talked at length about the naturalists and the scientists I was studying for a book I was writing about exuberance. He fell in love, as I had, with Wilson “Snowflake” Bentley and Bentley’s world of snowflakes, and many times I came into his hospital room to find him asleep with Bentley’s book of snow crystal photographs open on his chest, or lying next to him on his bed.

  Richard was discharged from the hospital on the winter solstice, profoundly weak and glad to see something other than hospital walls. We spent Christmas and its surrounding days in a Baltimore hotel near Hopkins so that he could receive intensive outpatient care. It was a difficult time—he was frail and his immune system more so—but we soon fell into a quiet rhythm that was not without its appeal. Each morning, we went together to the oncology clinic, where he had his blood drawn, and then we waited to hear the day’s numbers, each of which took on its own significance and created its own anxieties when it was too high or too low. We talked to other cancer patients, which we loved doing and which gave us heart. In the afternoons, we went back to our room and listened to carols, or Richard slept and I read. We lay nestled together at night, taking joy in the season and in the warmth of our bodies next to each other.

  Richard got better. He gained back his weight and we gained back our hopes. We worried less about each fleeting fever or day of fatigue and, after a long time’s passing, we made love again. Slowly, gently, we fell back into life. One day several months after Richard’s transplant, we went to Hopkins for a routine follow-up visit and waited for Ambinder to give us the results of Richard’s most recent lab tests and scans. We had cause to be optimistic, but dread tends to trump optimism when one is waiting for results in an oncologist’s office.

  Ambinder lumbered into the room, radiant. This was a good sign; Ambinder is not an essentially radiant man. “So,” he said to Richard, “I thin
k you are well. I think you have beaten this thing.” Richard and I, used to Ambinder’s more usual bluntness and nuanced pessimism, sat silent and disbelieving. Then it sunk in.

  Those minutes of pure joy will stay with me always: Richard smiling at me, me at him, both of us at Ambinder, and Ambinder at Richard and me. It had been a terrible, intimate journey with the best doctor we could have asked for. Ambinder had taken Richard through a grave illness and high-risk medical procedures. He had been blunt, clinically astute, and kind. He had not promised what he could not deliver. He had been everything one could wish for in a physician, and I felt toward him the kind of gratitude and respect you feel for someone who has saved the life of the person you most need and love. Richard, in turn, felt for him the kind of respect that, until that point, he had given only to Henry Kaplan at Stanford. Ambinder, he said, was a “doctor’s doctor and a scientist’s scientist.” That was as good as it got for Richard.

  We owed a great debt to the rest of the medical and nursing staff at Hopkins as well, and in a more abstract way, to Hopkins itself, a great teaching hospital. Richard was convinced that who he was as a physician, and much of how he did his science, came directly from his medical education at Hopkins. For my part, I had fallen in love with Hopkins the first day I joined the faculty and had stayed in love ever since. Our Hopkins bond was a strong one. Sometimes, after one or the other of us would return from giving a lecture or doing Grand Rounds at another hospital, we would compare our experiences there to those at Hopkins. Fairly or not, there was never any serious competition. We might acknowledge that another medical school did good science or had good doctors, but Richard would usually end up saying, with a trace of the romance that Hopkins often evokes, “I don’t know. There’s just something about Hopkins.” It was a phrase we used many times as shorthand for how we felt: no long discussions, no elaborate comparisons. One of us would turn to the other and say, “I don’t know. There’s just something about Hopkins.”

  After our meeting with Ambinder, we decided we should do something to mark the moment. A believer might have suggested we stop at the hospital chapel, but Richard, who was Jewish, was not a believer. Instead, he said quietly, “Let’s go to Hurd Hall.” We sat together in the hospital’s great clinical teaching amphitheater, where he and I had taught and been taught, and found ourselves absorbed in thought, each trying to comprehend what we had just been told. Neither of us said anything. There was just peace. Just quiet. Finally, Richard put his arm around me, looked around the amphitheater again, and said, “I love this place.” Then we went home.

  In the months to follow, we had our future back. Richard threw himself into his science, we saw our friends often, and we arranged to give lectures without being concerned that we would have to cancel them. Richard worked on his studies of schizophrenia and started seeing patients again. I, with delight, got back to writing my book about exuberance; we began to make up for time lost and commitments broken. It was a magical interlude, gentle and love-filled, perfused with thankfulness. It might have lasted, but it didn’t.

  Six months after our celebratory meeting with Am-binder, Richard returned to Hopkins for a follow-up visit. Richard’s most recent scans did not look good, said Ambinder. There was a mass in his lung, and it looked like cancer. The thoracic surgeon Ambinder had consulted did not think it was cancer, but neither of us found this reassuring. Unfortunately, we trusted Ambinder’s clinical intuition. We would have to wait for more consults and the results of a lung biopsy.

  We snapped back into the dark space we had occupied before with the Burkitt’s, but tried to get on with our lives until we knew for certain whether Richard had lung cancer. We saw friends, we worked, we loved. But there was fear again, and dread. Uncertainty was in everything we did. For each time we did something of consequence, there was a moment of ice-cold fear, a question unasked: Is this the last time we will do this? How long do we have? How will he die? When? Where?

  There was a possibility that Ambinder was wrong—anything was possible—and this slim chance allowed us to make it through for a while. The last days of November slid into December, a time of year we both loved, and a time in Washington we particularly loved. We lived what we knew to live. My mother and I bought a Christmas tree and a juniper wreath and we strung the lights. We listened to carols and watched, as we did every year, The Bishop’s Wife. We waited, with the rest of America, for the outcome of Bush v. Gore in the United States Supreme Court. We waited for the results of Richard’s lung biopsy, which, when we got them in mid-December, were unequivocal. Richard had lung cancer, it had spread to both lungs, and it was inoperable.

  Our initial reaction was paralysis, then shock. These feelings protected us for an hour or so, and then everything became a nightmare. I poured us each a scotch and we crawled into bed to talk and to hold each other. We were not by temperament inclined to view difficulties in our lives as unfair—we never questioned that we had been immensely lucky in friends and opportunities and in having each other—but this day was an exception. It was the first and the last time we ever said it, but it did seem unfair. We had just gotten back to our normal lives, or thought we had, after months of chemotherapy, a bone marrow transplant, and long months of terrible anxiety. We had spent our store of emotional energy on fighting his lymphoma and, once we knew he was cured, had put the experience behind us as well and as fast as we could. We had grown accustomed to having an open future again and to knowing our days as less worried, lighter and easier. We were beginning to take for granted making love again, and laughing without constraint. We had shed the greater part of our morbid irony.

  It was a long night. I slept little and badly, constantly reaching out for Richard, burrowing my head in his shoulder, listening to him breathe. Richard, more practical than I, took a prodigious amount of diazepam and slept soundly. The next morning, we talked about what to do to make the best of things. Neither of us knew how long he would live—the life expectancy for his kind of lung cancer was six months—but we had always enjoyed each other’s company, and we were determined not to allow the prospect of death to take that from us. Indeed, as we desperately sought some hint of a silver lining, we realized we would have more time in each other’s company than we had ever had. This would be a good thing.

  Somehow the morning and the afternoon passed; they must have. I built a fire in the fireplace, put on Christmas carols, and told Richard that I had planned a romantic evening—music, wine, and dinner in front of the fire—and that no matter what happened, I was, as always, his for the asking.

  Richard began to cough, a deep and frightening cough. I panicked and immediately assumed the worst: we were going to have even less time than we had imagined. With a bitterness I did not know I had, I thought: Enough—God never opens a window that he doesn’t close another two. My bitterness was premature. Richard pointed frantically at the fireplace, which was filling fast with smoke. Soon, the living room and finally the entire house were full of smoke. We were living an Addams Family nightmare. Squirrels, it seemed, had built a nest in our chimney, and while they broiled, we smoked.

  Hacking, Richard and I made our way up to the top floor of the house, abandoning carols and romance as we went. I was disconsolate at what I had done, desperate that my plans for an evening of love had so ridiculously gone up in smoke. I couldn’t even get the first evening right; what would happen in the months ahead?

  Richard, seeing how I felt, put his arms around me.

  “Thank you for the fire,” he said.

  He paused slightly.

  “Did you know that smoke is a carcinogen?” he asked.

  There was a moment of horrible silence. Then I saw the smile on his face, and we both burst out laughing. We were on our way to dealing with something unknown and awful but at least we were going to be in it together. And, we would have Richard’s wit to help.

  Richard’s prognosis focused our thinking. I canceled as many of my lectures and academic commitments as I could in or
der to stay at home and look after him. We canceled professional trips to Davos and London and Rome, but kept our plans to visit Los Angeles in a few weeks’ time. We had close friends and family there and could read and relax. We could walk alongside the ocean. Richard was still alive, and we did not plan beyond that.

  Certainly, the Christmas season was sad, but it was at times quite wonderful as well; we laughed even more often than we usually did, and reached out to each other with more need and a tender pleasure. It was Christmas made lovelier for our thinking it was our last. Life, strangely and redeemingly, went on in a rather normal way. Knowing that death was likely within the year, we laughed and loved and took little for granted.

  A week or so before Christmas, we had dinner in Georgetown with close friends of ours, Bob and Mary Jane Gallo, both of whom had been unimaginably kind to us during the long months of Richard’s chemotherapy and bone marrow transplant. Bob, a virologist and an AIDS researcher, was talking science with Richard when he stopped suddenly, looked directly at Richard, and said, “It’s great. I can’t believe how much better you look.” My heart dropped fast and froze. It was only two days after the Hopkins pathologist had confirmed the diagnosis of lung cancer, and we were still trying to figure out how to tell our friends and colleagues.

  Richard told them about the diagnosis. Bob looked stricken and was, for a while, uncharacteristically quiet. He and Richard were particularly close. Bob had been the head of a major laboratory at the National Cancer Institute (NCI), part of the National Institutes of Health in Bethesda, for decades; both were doctors. No one needed to say aloud what it meant to be diagnosed with inoperable lung cancer, particularly in the wake of a recent bone marrow transplant. I could see Bob taking it all in, and I could see Richard watching Bob taking it all in.