Nothing Was the Same (5 page)

I hoped that this would be true, but the world and his illness being the way they are, I was not sure that luck would carry him as far as would be fair.

Six months after I first discussed my manic-depressive illness in public, Richard and I spent our wedding anniversary in Rome, where he was giving a medical talk and, as part of a bicentennial lecture series about John Keats, I was speaking at the American Academy in Rome. We had several days together of aimless wandering and evenings with friends and, on our anniversary, a romantic dinner on the rooftop of the Hotel Hassler, where we were staying. It was a sweet lull in the wheeling days that had become our lives. Late one afternoon, after a long walk by myself through the Borghese Gardens, I returned to our room, where Richard had been working on a paper. It was evident he had been up to something.

“I got you some flowers,” he said.

I looked around the room and saw nothing.

“But first you have to find them.”

His smile was broad, his mind afoot. I looked around the room again but still could see no flowers. The only place left was the bathroom, so I opened the door. Richard had outdone himself. The bathtub was filled with floating blossoms of white and pink and lavender. It was a stunningly beautiful sight. I looked at the flowers more closely; they looked suspiciously familiar.

They were. The day before, the staff of the Keats-Shelley House had kindly sent me a beautiful bouquet of roses and lilacs to thank me for my lecture. Richard, while I was out on my walk, had removed the flowers from the vase, cut their stems, and set them a-sail on the water. It was low-cost and very Richard.

He said eagerly, “Keep looking. You’ll need to get down on your knees for this.” Feeling mildly ridiculous, and wheezing because I’m allergic to roses, I got down on my hands and knees to explore the blossoms as they drifted in the bathtub. My hands were wet and cold and my knees soon sore, but I kept at it and finally discovered, attached by a paper clip and a rubber band to the stem of one of the roses, a pill bottle with a note inside: “Check the bed.” It was a hunt. Richard was in his element.

After a prolonged search of our exceedingly large bed, I found a small red box. It was from a jeweler in Rome and inside, on silk, was an antique gold ring. Underneath one of the pillows was a note. “Thank you for the happiest year of my life,” Richard had scratched in his dyslexic hand. “I know that talking and writing about your illness has been hard. I am very proud of you—not only as your husband, but as your colleague.”

The next morning, Richard dipped my new ring into the waters of the Trevi Fountain and then slipped it onto my finger, next to my wedding band. It would be with me when he could not, he said; it would lessen the hurt from the cool silences or sharp remarks that might come my way. After we returned to Washington and criticism did lay me low, Richard was wry and loyal and he brought me back again. When things went well, his joy was undiluted, and we hung the moon.

We laughed and made love through those Italian days, and thought our happiness imperishable. It was a time of such closeness that even now I cast into those memories for assurance. I had Richard, we had each other, and it was enough.

Time sped by without our believing that it could end. Love pushed back our fears that his or my illness might come back, that one of us might die. It was a blithe time, and it did not last.

PART TWO

L
AST
C
HAMPAGNE

Medical etiquette called for a
physician to call for two glasses
of champagne and to drink them
silently with his patient when that
patient was a medical man who
had just passed any hope of
recovery. The meaning of the
champagne was understood: the
need of awkward words obviated
.

—RICHARD DAVENPORT-HINES

B
ROKEN
P
ORTIONS

Richard was thirty-three years old when he was diagnosed with stage IVB Hodgkin’s disease. This, in 1973, was a death sentence. A large tumor in his chest was growing rapidly; the cancer had already spread to his spleen, liver, and bones. Two vertebrae had disintegrated from the malignancy in his spine. There was nothing to be done, Richard said, except to read carefully through his life-insurance policies, write up the experiments he had been working on, and think of a way to say goodbye to his three-year-old daughter and his twin sons, born only months earlier.

Richard’s colleagues insisted he fly out to the West Coast for a consultation with Henry Kaplan, the Stanford oncologist who had pioneered a radically aggressive treatment for Hodgkin’s disease. Over the next two years, Richard received massive doses of radiation and chemotherapy, which saved his life. He attributed this stay of death to the fearlessness and the restless brilliance of his physician. Kaplan’s “secular miracle,” as Richard put it, lost no wonder for him because it came from a doctor
rather
than an ancient faith or prayers. On the contrary, it intensified his childhood belief that science could do incomprehensible things.

Richard caught the morning side of a fast-breaking wave in medical science, and he remained indebted to clinical scientists, especially Henry Kaplan, for the rest of his life. He regarded the nearly thirty years of life he had after his diagnosis of Hodgkin’s disease as a gift neither deserved nor undeserved, but an astonishing feat of medicine. He did not believe that the seeds of death left in him by the radiation were unjust. He knew what he owed to science, and he had an unassailable gratitude toward his doctors. Nothing changed those basic beliefs.

Richard stayed well for twenty years. The second ten of these were ours, a decade of health that lulled us into believing that his past medical problems were truly past, not the determinant of our future. The next decade, however, defined more by illness than by health, established that the arrangement between his life and his death was a darker one. Kaplan’s treatment for Hodgkin’s disease had been brilliant but imperfect, as science at its frontiers so often is. Radiation, which cured Richard of his first cancer, was to come back three times: twice nearly to kill him and the third time to succeed.

We knew such delayed damage was possible. Leukemias and other late-occurring cancers were not uncommon in patients treated with radiation; more recently, doctors had observed that a disturbing number of the Hodgkin’s patients who had been treated with high-dose radiation were also dying of “silent” heart disease. Because Richard had been a part of the early Stanford clinical trials, our internist ordered a cardiac stress test; it had to be stopped. The year before we got married, Richard was treated at Johns Hopkins for a 99.
9
percent blockage in his left anterior descending artery, a vessel subtly referred to by cardiologists as the “widow maker.” Four hospitalizations later, Richard’s heart was again hale and fit and, for a handful of years, he had an easy health. We were more wary than we had been before but thought, without thinking well, that we had paid our dues for his earlier survival of Hodgkin’s.

It was never to be that easy. In the summer of 1999, fast and without warning, Richard got very sick. His weight plummeted and he found it hard to breathe. He no longer was the alert, intensely curious man I had fallen in love with; rather, he was dull and disinterested. I scarcely recognized him. Richard was fading away quickly, melting like the Wicked Witch, someone for whom, when he was well, Richard maintained a strong affection.

The scans ordered by our internist revealed tumors in Richard’s liver, rectal wall, and lungs. No one tried to minimize this medical reality, although, in an unthinking moment of whistling past the graveyard, I mumbled something about the advances being made by our colleagues in oncology. This seemed improbable even as I said it. Richard looked at me incredulously: there was little hope against tumors strewn archipelago-like, so far and wide throughout his body. Richard and I were optimists by nature, but not insensate.

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 think 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.”