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Relativity
  1. A A Khorana
  1. The James P Wilmot Cancer Center, and the Department of Medicine, University of Rochester School of Medicine and Dentistry, 601 Elmwood Ave, Box 704, Rochester, NY 14642 USA; alok_khorana{at}urmc.rochester.edu

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    I’m a physician, an oncologist. I take care of people with cancer. I’m trying to write a love story. It’s a little disjointed, so bear with me. I’m going to start in the middle, with wedding pictures. No particular reason, except perhaps because it’s the high point of the story. Then I’ll work my way back to the beginning. And the end—well, it’ll be at the end. Or, not: that’s right, I might not write an ending. You see, it feels good to be able to control something.

    It’s kind of sad, if you think about it: the only way an oncologist can write a pretty love story is if he skips the ending . . ..

    The wedding pictures were beautiful. Perfect, really.

    Strangely enough, that’s what I remember most, of that tumultuous year and a half. Looking at their wedding pictures in the chemotherapy suite, where she and her husband had brought in their wedding album. She sat in a blue recliner, holding the album in her lap, turning pages using her left hand. The golden brown chemotherapy agent infusing into her right antecubital vein contrasted with the blue of the armrest. Her husband sat on a little stool to her left, helping her flip the pages. I stooped awkwardly over her right shoulder, gazing raptly at the collage of images. They were in nearly every one of the pictures, with friends, with parents, with family, always smiling, laughing, glittering, glowing. The situations differed: in jeans and t-shirts, rehearsing; animated faces and hands crowded around small tables, raising toasts; bare shoulders accentuated by black dresses and black bow ties on a dance floor; in obligatory portraits, surrounded by symmetrically positioned (and colourmatched) friends and family. They, and I, lingered most over pictures of the ceremony itself: the walk up the aisle, the reading of the vows, the exchange of rings, the you may kiss the bride kiss. For a few moments, they had transported me outside the cancer ward, and allowed me a glimpse of another world, happier, richer, more fulfilled, but still theirs. One image, in particular, stayed in my mind. It had been taken outdoors, at the end of the ceremony, as the newlyweds descended the steps outside church. Lively, vivacious, smiling, laughing faces were lined up on either side of the couple. The giant wooden church doors towered in the background. He was one step ahead of her, his face half turned, left hand extended, clasping her right, helping her down. She had just safely negotiated the first step, trying not to trip over her bridal gown, and was looking up at him, laughing at her small success. I wondered if the photographer understood what he had so perfectly captured here: the true obliviousness of the truly in love. I remember feeling, despite myself, a little envious looking at the picture. My fiancée and I had just finalised our wedding plans, and our meagre budget would not allow for a professional photographer.

    In the months preceding and following that wedding, I saw her (and him) in many imaginable, and unimaginable, settings; in many different moods, pensive and confident, anxious and sad; in hurried appointments after work, and in frantic emergency room visits in the middle of the night. Such encounters left me with many memorable images. But it is this picture of her face bathed in a golden September sunlight, framed in shimmering bridal white, looking up at him, laughing at his half smiling, half concerned gaze, not denying herself happiness, that is the most vivid in my memory, and that I choose to carry with me. (They thought it was perfect, too. I know, because they told me later that they had this particular photograph made into a poster.)

    The envy, of course, was ironic.

    Ironic, because, more than anyone else, it was I, her oncologist, who knew how the photographs could be construed as an illusion. Don’t get me wrong, now. I don’t mean illusion in the sense of a contrived image. Many wedding pictures are like that, of course. Everyone participating in the ceremony, slyly making bets on how long the marriage is going to last. Here, the happiness was heartfelt, every gesture of joy genuine, every tear spontaneous. No, the illusion was a little more complex. It was an illusion in the sense that we view marriage as a beginning. Beginning of family, beginning of a life together, the beginning, in a way, of hope. It’s what makes grown women cry, watching wedding ceremonies. But, as almost everyone attending the marriage had to know, this was not a beginning but an end. They were celebrating not the beginning of a remarkable love, but the end of one.

    Beginning, end.

    Yes, she had cancer. Yes, it was incurable. Yes, she would die in a few months, at most. Yes, she would die a rather painful death—after suffering through chemotherapy, multiple surgeries, and whatever else we could throw at her in our vain attempts to control the uncontrollable.

    Yes, she knew.

    Yes, he knew.

    The beginning: I remember the first time we met. It was her second visit to the cancer centre, just before she was about to start chemotherapy. I hadn’t looked at her demographics before I walked in, and I tried my best to contain my surprise at how young she looked. She was of average height, with dark hair; pretty, in an understated sort of way. Her warm smile immediately made me feel familiar. There was a young man sitting next to her, similar in age, whom she introduced as “my friend”. They were both optics majors; she just starting her first job, he completing his doctorate. Standing next to my attending physician, listening to their story unspool, I observed the two interact, and it seemed clear that they were more than friends. Two weeks earlier, she had been driving back upstate from her home in the Wisconsin, when she felt an ache in her abdomen. Reaching for the site of pain, her right upper quadrant, even her untrained hand could feel the lump. She’d never smoked or drank or done drugs. There was no family history of cancer. She’d never been exposed to hazardous chemicals or asbestos or lead. Nor had she lived near a power line. In other words, she had no risk factors. A needle aspiration and a few days later, we had a diagnosis. Adenocarcinoma of unknown primary, stage IV disease, with multiple nodules involving the liver and peritoneum. Incurable by chemotherapy. Unresectable by surgery.

    At 24, she’d just been told that she passed middle age when she turned twelve.

    On that first encounter, I introduced her to her disease. We discussed her options—chemotherapy, surgery, radiation, clinical trials, palliation. We discussed the side effects—nausea, vomiting, diarrhoea, fevers, chills, susceptibility to infections, hair loss, loss of appetite, weight loss, fatigue, all of the above. And the possible benefits: extending her life span by a few months, but certainly not a cure. They both listened to us—and I could see them feel strong, confident—“we’ll beat this”. I remember walking out of the room that day, and remarking to the attending physician, “They didn’t get it.”

    All of the above is what she experienced over the next few months. She came to the clinic every three weeks for chemotherapy—and was occasionally admitted to the hospital in between cycles for the side effects. She was young, and we pushed the doses as high as we possibly could. She suffered cheerfully through the side effects: hair loss, vomiting, neutropenic fevers. Three months after starting chemotherapy, we repeated our scans—to look for a reduction in tumour size. Despite using the most aggressive chemotherapy we could, the tumours had all grown. Progression of disease. I remember the growing desperation in their eyes, when we told them the results. What next? We decided to try a different kind of chemotherapy. A different drug, similar side effects. This time, the side effects were a little harder to take: it’s always harder when you know it might not work. A few weeks later, we repeated the scans. Progression of disease. Desperate situations, desperate remedies: we sent her to the surgeons—futile attempts to hack out what tumours were growing. She took nearly two months to recover from that surgery. Two months of being too weak to feed herself—of often coming into the hospital or emergency room with an obstructed gut and other problems. When she finally recovered from surgery, and was able to eat again, we repeated our scans, hoping to gain a new baseline prior to restarting chemotherapy. Progression of disease. This time around, she had lung involvement as well.

    All of us noticed that at every one of those numerous admissions, he was always at her side. Whenever he left for his lab (and never for more than a few hours), he’d make sure his mother or someone else was with her. This was not an ordinary couple.

    A month after those latest scans, and a few weeks after we had started her on thirdline chemotherapy, he proposed to her.

    They’d talked about this before, and they’d mentioned it to me, but none of us taking care of her actually believed they’d go through with it. Then he went to a local jewellery store, bought a ring, went down on his knees and popped the question. She said yes. A good eight months after she’d been diagnosed with terminal cancer, they were engaged to be married. I remember them telling me the story, laughing, recounting the details. The obvious incongruity of the situation, that they were talking about his proposal of marriage, in her oncologist’s office, didn’t seem to strike them. I searched his face for signs of insincerity or naiveté or even immaturity, and found none. They knew, both of them, exactly what they were doing, and it was exactly what they wanted to do. Which was this: to get on with their lives, as simply and normally as they could, accepting of reality, but not of reality’s attempt to impose limitations. Even to my mind, raised in the Eastern philosophy of maya, life as illusion, and numbed in my chosen profession by too many patients lost to cancer, each loss no less of a tragedy, this was a remarkable courage. Since childhood, I had been taught again and again, of the lessons of the Gita: one must remain the same, in heat or in cold, in pleasure or in pain, in victory or in defeat. I would have to travel halfway across the world, however, to see this put into practice.

    When I saw her again, a week later, she’d started to recover from chemotherapy. Her face was still gaunt, and she continued to have trouble eating and was persistently throwing up. We sent her back to the surgeons, for one last surgery. Her liver was so enlarged by cancer, it was actually obstructing her stomach. The surgeons operated and created a bypass to restore some functionality to her intestinal tract. It was the last surgery she’d ever have. Then we discontinued chemotherapy and placed her on an investigational agent, a blood thinner that was the focus of my research. It had little of the side effects associated with chemotherapy, and might possibly slow the growth of the tumours.

    You see, we wanted her in the best possible shape for the wedding

    It was a September wedding, and it was beautiful. She looked a little thin, but otherwise well. If you didn’t know the story, it was difficult to guess. They cried when they said their “I do’s”. In sickness and in health, until death do us part. I teased him about the crying afterward. For their honeymoon, they went to a little island in the Great Lakes, a place, apparently, where automotives weren’t allowed. I found that ironic—raised in technology, educated in technology, yet our failure to treat her disease represented a failure of technology. No wonder they wanted to keep technology out of their honeymoon. They had a great time.

    And the wedding pictures were beautiful. Perfect, really.

    The end: I remember an emergency room admission almost a year after she was diagnosed, and soon after their wedding. It was two o’clock in the morning when I received a call from the emergency room physician. I went in to see her, more from a sense of responsibility, than for a real need for my presence. He was there, of course. They called me by my first name. We’d grown close, over that year. While she endured her annus horribilis, I’d gotten married as well. That night I stayed and talked awhile. We spoke about irrelevant stuff. Henna. Harry Potter. iMacs. Movies. Rushdie. They told me what their work meant to them, and I talked to them about my career plans, my recent wedding (and frustration with our amateurish wedding pictures). After an hour and a half of procrastination, I told her what she and he already knew. I told her she was dying. I said I didn’t think she had very long to live. And I handed her Do Not Resuscitate papers, and asked her to sign them. That was the first time I ever saw her cry. We both held her hands, while she sobbed. Then I left them alone, together, and went home to my wife, and hugged her and cried, thanking whatever or whoever determined our destinies: thank god it isn’t us.

    When I returned in the morning, her chart carried a bright orange sticker on front, with these words in bold: Do Not Resuscitate/Do Not Intubate.

    I followed her for nearly six months thereafter. Intermittently, she kept taking the investigational agent although we had no idea if it was even worthwhile. It made us both feel that she was receiving treatment. To give up hope is to die early. We didn’t prescribe any more chemotherapy. We focused on pain control, and symptom relief. She stayed at home, and gave up trying to work. She was too tired, really. She tried reading books, and finished the new Harry Potter. Her morphine requirements kept on increasing, as her body grew increasingly used to it. We encouraged her to seek second opinions. She did; there was nothing anyone had to offer.

    We stopped taking scans when she reminded us that, for all we’d put her through, there hadn’t been one scan that hadn’t shown progression of disease.

    After a few months, it became more and more difficult for her husband to take care of her by himself. She was pining for her hometown in Wisconsin, and for her family. They’d visited her, as often as they could. And she’d gone back and forth. She decided to leave, then came back, and then finally decided to leave—this time, for good.

    That last visit, for the first time since I’d known her, we hugged. She’d always been very dignified, in a quiet kind of way, not wanting to show emotion, at least not in front of her physician. This time, though, she embraced me. Is this goodbye, I asked, laughing. For now, she said, but her jaw was set, and she had a resolve in her eyes. Her husband looked on, smiling, and shook hands with me. Goodbye.

    I called them at her parents’ home in Wisconsin, a few weeks later. She was on a morphine drip, too sedated to answer the phone. He was there, of course, and filled me in. Her pain had steadily worsened, and they had to call the hospice in. The hospice nurses felt it was a matter of days. Interestingly, the emergency room at their local hospital had performed a scan to evaluate her worsening pain. For the first time that either one of us could remember, her tumours had not grown in size. Stable disease. “At least we gave her that much.” It didn’t really make a difference. I promised him that I’d keep in touch, and asked him to call me if things changed. He never did. I never called back either.

    As I said, what I write on this paper I have control over. I’d like to believe that she’s still out there, in a little town in Wisconsin, puttering along, waiting for summer. That her tumours are strangely, mysteriously controlled, as she rises out of a morphine induced haze. Although I resent losing her to a strange physician in Wisconsin, maybe it’s all for the best. This is one ending I’d rather not see. Either way. No, really.

    You see, sometimes, despite being a physician, despite everything they hammered into me in medical school, despite my natural curiosity, there are some details I really don’t want to know. Or care to. Because I’m an oncologist, and it makes my job a little easier. Not knowing.

    THE END

    Some patients (and some deaths), as most physicians would acknowledge, are more equal than others. Why would this patient, this couple, impact my life, make me want me to set pen to paper, more than the others I’ve seen, and continue to see? Many answers come to mind. One, of course, is age. Most of my patients are in their sixties and seventies, and somewhat disdainful of younger physicians, unlike the subjects of this narrative. Shared points in the trajectories of our lives (even as these—related, relative—trajectories were tragically diverging) linked us as well: completion of school, beginnings of careers, new marriages. Other superficialities drew us together: our interests in academia and research, a love of both culture and multiculturalism, our passion for books.

    All of these answers, but, above all, this one: I needed to write an account of what I had seen, and how I had responded to it. More than that, I needed to be able to control that account, control that response, and write a narrative that would somehow transcend my unwieldy pen, to convey the uniqueness of its subjects. For I needed to grant to my patient the immortality (however transient) that I had been unable to grant when I used this same pen to write her prescriptions. And the act of telling this story, their story, my way, would release me from the guilt and, yes, the impotence of not being able to change the way it ended.

    Acknowledgments

    Dr Khorana is supported by the James P Wilmot Cancer Research Fellowship.

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