Being Brett is a memoir that chronicles the author's daughter's harrowing struggle with Hodgkin's disease.
"Hobbie's harrowing account of Brett's last days is a shattering portrait of how a family struggles through the loss of one of its beloved members." - Publishers Weekly
Being Brett is a memoir that chronicles the author's daughter's harrowing struggle with Hodgkin's disease.
"Hobbie's harrowing account of Brett's last days is a shattering portrait of how a family struggles through the loss of one of its beloved members." - Publishers Weekly
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Overview
Being Brett is a memoir that chronicles the author's daughter's harrowing struggle with Hodgkin's disease.
"Hobbie's harrowing account of Brett's last days is a shattering portrait of how a family struggles through the loss of one of its beloved members." - Publishers Weekly
Product Details
| ISBN-13: | 9781466823594 |
|---|---|
| Publisher: | Holt, Henry & Company, Inc. |
| Publication date: | 09/04/2024 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 337 |
| File size: | 600 KB |
About the Author
Douglas Hobbie lives in Conway, Massachusetts, with his wife.
Read an Excerpt
CHAPTER ONE
RECURRENCE
My life is supposed to be happening again, he thought, strapped into his seat as the early-morning westbound flight lifted into the air.
They were his older daughter's recent words and they made his heart race. A year and a half before, one year after her graduation from Smith College, Brett had flown to San Francisco, the chosen setting for her next big adventure, the quest for "real" work, financial independence, selfhood—a dazzling young woman, as she appeared to him, hastening to a world of possibilities. Just six months after her arrival on the West Coast and only weeks after she'd finally come into a challenging job on a small out-of-the-mainstream newspaper—"I have homework again," she reported-she discovered a small lump above her collarbone. Actually her girlfriend, Eve, had been the first to notice it. As if a powerful switch had been thrown, her life veered, not out of control, but onto a different, scarier track where events speeded up and everyday existence was perilously heightened.
The perplexing lump was an enlarged lymph node, possibly a symptom of some innocuous virus, she was told, or a relatively nonthreatening thyroiditis or—the ominous word became more frightening the longer they avoided it in their long-distance phone calls—cancer. A lymphoma. Alone in San Francisco with Eve, she went through the initial diagnostic procedures, soon becoming entangled in the frustrating bureaucracy of a large city hospital. The tape recorder purchased for her newspaper job she now brought to her interview with a Dr. Leavitt. The lump was removed under generalanesthesia for biopsy. She'd never been under general anesthesia before or experienced surgery of any kind. She'd never spent a day in a hospital. Following the surgery, she called from her apartment, sounding exhausted and distant and remarkably calm. "When I woke up, my doctor was at my bedside. He said he was quite certain it was Hodgkin's and I should know that. He was pretty emphatic about it." The cancer of young adults, someone had called it. Unlike other, more aggressive and stubborn lymphomas, she'd learned, Hodgkin's was curable ninety percent of the time if diagnosed at an early stage, often requiring no more than six weeks of radiation therapy. Instead of feeling only fearful and helpless, she had already begun to be determined. Back in Massachusetts, he promptly contacted experts at the Dana Farber Cancer Institute to develop a plan of action now that this unthinkable turn—unthinkable despite how accustomed one was to tragic misfortune constantly befalling others—was happening to them, to his daughter.
She'd returned to New England for Christmas and to have her illness staged in Boston. CAT scans, a splenectomy, for Hodgkin's can hide in the spleen, the oncologist explained. When it was established that she had Stage II Hodgkin's disease and her sole treatment would be the six weeks of radiation therapy, she decided to return to San Francisco and resume her newly independent life there. In fact, the course of treatment did not go smoothly. This so-called curable disease was far more complicated, plain trickier, than anyone had suggested. Doctors at the Medical Center at the University of California, San Francisco, found Dana Farber's assessment of his daughter's disease inaccurate. Six weeks of treatment became six months, beginning with dreaded chemotherapy and ending with radiation. Brett did what she had to do.
"Today begins with the usual burning gut and bent-overness of morning," she wrote, once the spooky, poisonous chemo had begun. Scrambled eggs and toast and fifteen pills and a tall glass of something fresh-squeezed to ward off the evil spirits. My body begins to feel like a hive or a fist.... Rawness inside my veins.... Afternoons are sleepy, incoherent. I walk on the beach with my eyes closed.... I wait for hunger and sleep like holidays. This is so hard! . . . I'm trying to keep my head on my shoulders, my hair on my head, my hair on my chinny chin chin.... This body isn't helping, but I try to love it, to trust it. Driving me crazy, though-the internal limp... always the pain or the absence of pain, while everyone around me goes to work or play or grumbles about the weather. Yesterday I got bundled up and went to watch a soccer game-came home all freckled and bummed out. I couldn't remember the feeling of being able to run, kick a ball, and breathe deep.... Leavitt thinks I'm "tough." I joke around with him. I use words like "appreciable" and "morbidity." I've learned some things. I ask him if all oncologists wear pink shirts. He's cute.
Things that help: chocolate frozen yogurt; hot baths and mineral salts; talking to you both on the phone; the idea of flying to Italy as soon as this stuff is over; yes, the Hobbies in Roma in beautiful shoes eating big plates of pasta and looking at big art with big hearts.... Oops—my side effects are starting up-pins and needles, dry mouth, dizziness—gotta go. I'm thinking of you all the time. Stay warm. Stay healthy for Christ's sake. All my love.
When she began to lose her hair, she had her head shaved—a hairdresser's fantasy, the hairdresser told her-and found she was quite beautiful bald, her eyes bigger and bluer. A fashion designer in a Cole Valley boutique, mistaking the consequences of chemo for a new hip style, asked her to model his dresses at Nordstrom's. There were emergency hospitalizations, once for a virulent, inexplicable skin eruption and several other times, each more frightening than the last, for variously mysterious fevers. There were numerous invasive proddings and pokings, repeated X-rays and CAT scans, the dark claustrophobia of the MRI, the grueling torment of bone-marrow biopsies, the anxiety of treatment postponed while her white count fluctuated uncooperatively. By June, despite the pain and fear and loss associated with the whole ordeal—her life on hold—she had come through. It was over and done with. The sacrifice of her spleen carried a burden of caution. Her radiologist warned ominously that she could perish of a bacterial infection within forty-eight hours. Any fever above 101 degrees required emergency attention. The chemo and radiation had impaired her heart and scarred her lungs. This formerly strong, athletic young woman was now plagued by a harsh, nagging cough and severe shortness of breath.
When the course of treatment ended, though, and the MRI, among other tests, showed that the cancer was indeed gone, she was ecstatic, that was the word for it, and shouldered her losses without bitterness. On the last page of the journal that had seen her through those months, she wrote thank you and goodbye.
She spent a restorative month with the whole family and a lineup of friends in New England, where, undeterred by the condition of her lungs, she settled into a self-disciplined routine of long daily walks. By Labor Day, sitting in the sunny garden waiting for the hour of her departure for San Francisco, she was in great form. Stoically, she endured another bone-marrow biopsy at UCSF and submitted to the precautionary procedure of a bone-marrow harvest. Healthy bone marrow, one and a half quarts of it, was extracted from her backside and preserved, frozen, against a possible recurrence of the disease While her doctors told her there was an eighty percent chance that she was completely cured-George Canellos of Dana Farber, with whom he'd kept in touch throughout Brett's treatment, therefore considered the procedure eighty percent unnecessary and didn't recommend it—they insisted it was smart to have healthy marrow in the bank. For Brett it marked the end of the whole process, the final detail, a last cause for celebration. "Back to the intrigue, moral complexities, black humor, irony, grainy realism ... of urban adulthood," she wrote them. She was especially excited about the spacious apartment she'd located, Uclean and sunny enough to be happily empty for a while ... until we're raking in the dough."
In October she flew to Santa Fe, where she hooked up with a new roommate, Beth Wilson, who had driven from the East Coast. They had connected that summer through a mutual friend, Edgar Mclntosh, who was also moving to San Francisco after the new year. In Santa Fe their friendship quickly flowered into a relationship, something they both must have been anticipating for a while. Their ensuing trip was a lovers' whirlwind tour of the West, which his daughter saw as a transitional adventure, her passage to a fresh start on the Coast. "Sunburned, agnostic, earthquake-proof, with a chipmunk on my knee, and evolution all around," she wrote from Bryce Canyon. "I'm one big iron pill in denim, thank you. Feeling very sunkissed and hearty.... Love and blisses, tall in the saddle, Brett." Earthquake-proof: the Great Quake of '89 had struck San Francisco on October 17; they'd missed it. One big iron pill: the marrow harvest had left her anemic.
In mid-November, a month after the bone-marrow harvest and less than five months since the conclusion of her treatment for Hodgkin's, she began to experience the same symptoms that had come down on her almost exactly one year before. Fevers, night sweats, tightness in her chest. It terrified him to imagine her fear on awakening at night, soaking wet, alone with what the eerie and unmistakably familiar sensations might mean. "Don't worry, kids," she told her parents long-distance. Only the week before she'd had her monthly checkup and everything seemed fine. She didn't believe the disease could recur so soon after being done with it. It had to be pneumonitis again, which she'd had before as a result of radiation therapy. The next time she called she said, "I'm not panicking, but there's something in the X-ray."
Now, en route to her adopted city, enclosed in the muffled reverberation of flight, how vividly he remembered her call the following afternoon. It was still morning in San Francisco. Both he and his wife, Holly, were on the phone. Brett had just spoken with Andrew Leavitt, her doctor at UCSF.
"I have Hodgkin's," she stated flatly. She began to cry. "I can't face this again. I can't take it. I don't want it."
She'd been so sure that she'd done all she could and that the awful year was over. She had a new girlfriend and the new apartment, which they'd been painting and fixing up for weeks. Beth had made her a desk that looked like she was about to embark on some serious work. She'd been getting her resume together. "I don't want to be the sick person," she said, "I don't want to be the one who needs help and support." She had always played the opposite role among her friends. "Now I'm always going to hate this time of year." Fall, the best-loved time of year, the season of beginnings. Her emotion was raw. "At last I've got this wonderful apartment," she cried, "to be sick in. I can't take the chemo, my veins can't take it. Symbolically, it scares me—all the repercussions of it....I don't want to make Beth and Edgar go through this." She had persuaded them to take up with her on the West Coast, she'd found the apartment. She didn't want these new people in her life to see her unwell. "I'm beginning to feel like a sick person. I know I'm healthy mentally, but I'm not a normal person with this." She felt herself becoming jealous of her friends just because they were normal and healthy. "My life is supposed to be happening again."
Carefully turned from the person beside him, a young woman have had yet to look at directly, he inwardly shuddered at his daughter pain. He had never heard her cry as she cried then, not even as a small child Throughout all the frustration and anxiety of the preceding year she had never wept as she did during that phone call. At one point she was sobbing so uncontrollably she wanted to get off the line.
"No, stay here," he said. "Stay and talk." He wanted to rescue her from this anguish, but the words he attempted to pile against it—words of reassurance and understanding and encouragement—felt hollow, useless.
Pulling herself together, she asked them, "My having cancer doesn't put too much stress on your relationship, does it?"
They talked, the three of them, until it seemed she had regained her composure, the rawness abated.
"Are you going on with your plans for Thanksgiving?" Holly asked. Brett was expecting twenty people to attend a traditional feast in the new apartment.
"Yes!" Her voice bristled with defiance.
"What are you going to do this afternoon?" he asked, anxious that she would be alone with her impossible knowledge.
"I'm going to squirt Visine into my eyes and go out on the street and look at people."
He and Holly had wanted to fly out immediately, the very day their daughter had delivered her disastrous news. But Brett wanted to carry on with the Thanksgiving she'd planned with her friends. One of them would fly out for a weekend right after the holiday, they decided.
The plane began its descent, shredding clouds, and the unfamiliar landscape below gradually emerged. Now I'm always going to hate this time of year. No you aren't, he'd insisted to her. In six months it will be over, really over, and you'll have your whole life ahead of you. How were any of them going to get through what lay ahead, especially Brett? During those confusing first months of treatment and afterward, he'd grieved the loss of her spleen, the brutal assault of chemo and radiation on her splendid body, her young life thrown of Etrack by illness just as she was coming into her own. He'd grieved her loss of innocence, the loneliness of her suffering, the unfairness of the whole ordeal. But the tears he'd cried recently sprang from an intimation of loss too profound to contemplate at all. "We're disappointed," one of her doctors had said concerning the recurrence, "but we think you have a good chance." That shocked and angered him. Chance of what? Brett's ultimate survival had never been in question, no matter what she might have to endure.
That day of rage and tears when she'd first learned she had Hodgkin's again, she said as their conversation came to an end, "I'm never going to be sick when I'm old. I'm doing it all now."
In blue jeans, with short, dark hair, Beth was waiting at the arrival gate as he got off the plane. As if to skirt his disappointment—he'd been anticipating the sight of his daughter's face—he approached her too impetuously, maybe, for someone who had only laid eyes on her twice before, and she seemed shy of his he-man embrace. He was grateful to this young woman for the impossible part she seemed willing to undertake. Within weeks of their Santa Fe rendezvous, surely with no idea of what she was in for, Beth found herself entering the frightening world of serious illness. I want to be there for her, she'd told him over the phone. They'd been together all of a month, and yet their relationship had already been subjected to extreme emotions and events, the sort of intensity that tore people apart if it didn't forge enduring bonds. Beth had comforted his daughter through the initial shock of the recurrence. They'd thrown their first big Thanksgiving dinner together despite their sudden unhappiness. She had bravely accompanied Brett to the exacting grind of yet another bone-marrow biopsy-evidently Andrew Leavitt was getting better at that; the first time, the table shook as he put his weight behind the instrument, the thickness of a pencil, trying to penetrate the bone in her backside—and earlier in the week, on Tuesday, she was there for Brett's fir chemo infusion and its grisly aftermath. That, it seemed to him, would have been plenty to discourage most people, especially young people intent on their pleasure and entitled to be free, hopefully for decades, from the daily miseries of arduous illness. Yet here she was greeting this stranger, Brett's anxious and overeager father, with a smile.
"How is she?" he asked.
"She wanted to be here to meet you but just couldn't make it." The intense nausea following the infusion on Tuesday—vomiting every ten minutes as if she'd suffered food poisoning—had let up by the following morning, but Brett was still exhausted and feverish two days later, and this morning, stomach cramps had immobilized her. "But she's pretty amazing," Beth said. While Leavitt was extracting marrow from her bones, she was asking him how his Thanksgiving had been.
Driving to the city, Beth talked about how much she liked San Francisco so far, job prospects, their apartment—as if everything in her life here were going according to plan.
Their apartment on Central Avenue, a steep block above Haight Street and just below Buena Vista Park, was in a newly painted three-story Victorian building with typically elaborate moldings and handsome pillars. At a glance this was a welcome improvement on his daughter's previous address. The apartment was on the first floor, a wide flight of steps above the street. He took a breath to calm himself.
She was still in pajamas this sunny blue day when she opened the door to greet him—the Black Watch plaid pajamas he'd been given one year, he realized, but had passed on to her. His last sight of his daughter had been at the airport only three months earlier. Striding down the wide carpeted concourse to board her flight to another start in California, she had turned to wave confidently. "I feel I can do anything now," she'd told him one afternoon that summer. She would need every ounce of that self-assurance in the months ahead.
"Hi," she smiled.
After the past two weeks, it was a relief finally to put his arms around her.
The new place was fairly spacious and light-filled, with tall ceilings, two fireplaces, unusually fancy oak floors, and a glassed-in back porch.
"Don't you love it, Dad?"
They drove through Golden Gate Park, lushly tropical to him—sequoia, eucalyptus, palm trees, fern, and rhododendron. When they reached the beach they decided to get out of the car.
"I love to come here." She hadn't been outdoors since her chemotherapy infusion on Tuesday.
The previous Easter the whole family, the five of them, had come to this beach. Dressed in gold blousy pants and a colorful antique kimono and beautifully bald, Brett looked then like a member of some Eastern religious sect. Her treatment was under way at that point, following considerable debate, but she'd been an indefatigable host. There was a wonderful photograph of her standing on the beach with her arms outstretched in an expansive, even triumphant, gesture: halleluiah. They'd taken many pictures to commemorate that day. Everyone looked well, everyone was smiling-an optimistic and youthful family striving on under temporarily troubled circumstances. Now that batch of snapshots captured an innocence that he'd never suspected at the time.
She took his arm as they walked down the wide beach, the wind in their faces. She moved slowly, slightly stooped-the chemo hunch, one of her friends called it-her black tam tugged down on her head. Suffers wearing black wet-quits, both men and women, bobbed on the water like seals, waiting for a wave. Kites high above the beach wagged in the air as if impatient to sail free. A tireless dog acrobatically field a tossed Frisbee. g~is daughter walked as if walking hurt. You had to go along, shooting the breeze, as though you weren't dismayed and crushed by the people here, the sky, the ocean, everything. He hated seeing her this way. Typically, she would have run directly to the water, splashing up to her knees in the cold surf.
She wanted to hear about her younger sister and brother.
Jocelyn was in Florence for her junior year of college, studying art.
As they continued along the beach, he summarized what he knew about her life abroad so far—her ancient apartment, the unbelievably good food, trips to Rome and Venice, a man she'd met in the program, also an American, and fallen in love with-as in a fairy tale, it must have seemed to Brett.
"That little artist," she smiled. She hadn't said how she felt about her sister being out of the country while she undertook another hellish course of cancer treatment. She'd never suggest that Jocelyn return to the States.
In September, Nathaniel, the youngest, instead of starting college like most of his friends, had sailed out of Newport on a tall ship.
"The Salty Dog," she said.
They discussed additional measures that might help her through the next six months. Megavitamins, acupuncture, support groups. She had already begun to pursue those possibilities. The fear was that her body wouldn't be able to withstand the normally prescribed six cycles of chemotherapy. Judging from her response to her initial treatment, her doctors didn't believe her white count would bear up. They intended to take the therapy as far as possible, but one specialist had told her to prepare herself for a bone-marrow transplant, which sounded nightmarish.
"Three times," and she laughed to tell it, "he's told me I could die in a transplant." No, such last-ditch options weren't something she had to think about now.
Several surfers began frantically paddling as a wall of water arose behind them. Two of them caught the wave. A young woman, powerful-looking in her black wet-quit, took it the farthest.
When they returned to Central Avenue, she sat on the steps waiting for Beth to unlock the door, pale, her breathing stressed. Their brief stroll down the beach had seemed leisurely and relaxed. In fact she had extended herself, inspired by his presence, eager to seem okay, and the modest outing had tired her.
It was easier, he realized—easier for him—to be with her in this trouble than to be apart from her. Separation made him prey to impossible imaginings, anxiety, and guilt. But to find her so altered, all her youthful fire subdued, following one blast of the fucking chemo. The first time around the doctors had decided a combination of four chemicals, collectively called MOPP, was the appropriate regimen for Brett's case. The first of these, mechlorethamine, was a derivative of the agents they'd used to make mustard gas in World War I. This time they were hoping another recipe, ABVD, would be kinder to her body as well as to her white count. The evidence following the first infusion wasn't encouraging.
"Damn it," she said, exasperated by her fatigue.
But an hour later, showered and changed for the evening, she appeared transformed, her complexion rosy, lips brightened with color. They found a festive restaurant in North Beach—nouvelle California Italian, Brett called it. She devoured an appetizer, salad, her whole hunk of swordfish—"It's so good to see you eat," Beth said—and they began to have fun, talking about the trip out west, Eastern Europe unraveling, Bush's language, lesbianism, the San Francisco art scene, new love. Before returning to the apartment they spent an hour browsing in a bookstore. He bought her a new volume of poetry by Sharon Olds, which she especially wanted, and an anthology of spiritual writings, a handsomely packaged book entitled The Enlightened Heart. By ten, the three of them were ready to turn in. They had avoided Hodgkin's disease for this evening out, and the evening was better for it.
Alone in his daughter's room—Brett would sleep in Beth's bedroom while he was there—he was moved to observe the life she had begun to put together here. She'd painted the room a warm off-white. There was a beveled mirror over the ornate Victorian mantel. In addition to the desk, Beth had made a bookcase and a night table, all painted white. Brett's aquamarine comforter contributed to the feeling of being near the ocean. Her grandmother's hooked rugs provided textured color on the inlaid oak floors. Jocelyn was present in a large self-portrait in oils, which the painter disclaimed at this point in her artistic development but which was a vivid and enjoyable likeness nonetheless. Everything here was orderly and cared for. She had arranged special stones, sand dollars, and shells, mementos of her travels and times of her life, on top of the bookcase and the mantel-piece, like sacred objects. They were sacred, he supposed. Her collection of poetry books represented an authentic passion. There were numerous cards and photographs and manila envelopes containing letters and important papers. There was a shelf of her journals in various sizes and shapes. Her violin, on the bottom shelf of the bookcase, was another crucial element of her inner life. She had hoped this year to get involved with a chamber group, something. There was a soccer ball in the corner on the floor. Long braids flying, he thought. He wanted her to play the violin again, if only for herself; he wanted her to play soccer again, a Sunday afternoon in the park, three or four to a side, just to open the lungs and stir the blood. Healthy blood.
The cowboy hat from Santa Fe—how happy she appeared in photographs from that trip a month ago!—hung on the wall, and a used, broken-in pair of cowboy boots from the same journey stood by the fireplace looking like old friends. It was an aesthete's spare, ascetic room, which conveyed what was important to her. She wasn't motivated by material things. The room represented her idea of home, everything she needed to make her life here. On her desk, along with books, photographs, various papers, there was a folder of information from UCSF pertaining to her course of treatment.
Now I have this wonderful apartment ... to be sick in.
The previous December, almost a year earlier, he'd gone into her bedroom in Conway her first night back home in Massachusetts after her brief venture on the West Coast. The evening felt incomplete to him, her loneliness unacknowledged in the cheerful banter of everyone's being together again. She was lying on her back with her eyes open They embraced, and tears momentarily surfaced as he pressed his face against her shoulder.
"It's going to be all right," she said. Spontaneously, she moved her hand to the back of his head, pushing her fingers through his hair, comforting him, the father, who had come into her room to offer comfort. The intimate, unexpected gesture startled him, and rather than shield her from his fear, he wanted to confide it.
"It's so scary," he said. "It hurts, it really hurts."
A moment later, as he straightened up to leave the room, she said, "Thanks for coming in." As he pulled her bedroom door shut behind him, she added, "It's good to be home."
It's going to be all right. That was the assurance they'd received from the medical establishment from the beginning. "I have every reason to believe that she'll be cured," Andrew Leavitt had boldly told them during a minor setback that first year of treatment. Leavitt's wife, a psychiatrist, had had Hodgkin's disease many years before, a fact that contributed to their confidence in the man's determined outlook. He believed his daughter would come through, unquestionably, but the additional cumulative costs frightened him, her immediate suffering as well as the long-term repercussions.
Why Brett had gotten Hodgkin's disease was a question he'd given up-but why~ad the disease so suddenly recurred? What had been overlooked or misjudged? What could have been done to make a difference? He'd been over these issues repeatedly, and now, wishing to sleep, he found himself futilely going over them again.
In Canada Hodgkin's patients automatically received six months chemotherapy as the sole treatment, which avoided the whole splenectomy issue. The Canadian approach had something to do with the costs and contingencies of socialized medicine but was also posited on the supposition that diagnostic surgery to examine the lymph nodes and the spleen might fail to uncover microscopic disease. Doctors in the United States, however, sought to avoid chemotherapy because of the greater severity and duration of treatment, as well as possible side effects such as sterility and, years later, secondary tumors, namely leukemia. Empirically, the surgeon at Dana Farber had informed them, the chance of missing disease was very low, and Brett's preliminary scans had indicated that the risk of the operation was worth taking.
The surgeon had also assured Brett that her disease could not be progressing as rapidly as she, who was sensitive to her body, believed it was. The cancer had taken years to develop, he explained—this wasn't an emergency; a few weeks made no difference. Nor had George Canellos been concerned about the short term when they'd contacted him before the holiday. Subsequent X-rays and CAT scans showed that Brett had been right. The oncological surgeon was wrong. In particular, the tumor in her chest, which they'd known about from the outset, had enlarged in a startlingly short time. If it continued to grow, radiation would soon be ruled out because of the risk to her heart and lungs. Suddenly it seemed to have been a mistake not to have acted as promptly as possible-before Christmas rather than after. In the end, additional scans persuaded the doctors that the laparotomy, involving a splenectomy, was still appropriate. The date of the operation was moved up.
As it turned out, no disease was discovered below the diaphragm. Brett recuperated from the surgery rapidly. Soon she was on her way back to San Francisco to begin radiation. Within two months this would all be over—that was the thing to bear in mind. The transition from Dana Farber to Moffitt Hospital at UCSF couldn't have gone more smoothly.
Doctors at Moffit, however, continued to be concerned about the growth in her chest. They decided to put her through an MRI, which provided a more precise image of the heart. That procedure detected a "layer" of cancerous cells too near her heart to risk radiation therapy. She would need chemotherapy after all. That had been shattering, the first major blow since she'd been diagnosed.
Of course, the disease in her chest had been the question at Dana Farber. Why hadn't they employed magnetic resonance imaging there? Canellos explained that they didn't use that technology for such cases in Massachusetts, not yet anyway.
"So if Brett had remained at Dana Farber for radiation therapy, the undetected and untreated cancer would have recurred?"
"It's conceivable," Canellos suggested, "that the scatter or broadcast of radiation would have gotten those cells without damaging the heart."
"That sounds awfully arbitrary."
"Unfortunately, for patients with tumors in the center of the chest, like Brett's, there's a thirty percent chance of recurrence in any case."
This was the first anyone had mentioned such a statistic to either of them. "Is that due to the very predicament we're talking about—the radiation inevitably fails to address those cells too close to the heart?"
Canellos said, "That isn't clear."
"Maybe it's worth taking the chance on radiation now and sparing Brett the chemo. That was the whole point of the laparotomy, wasn't it?"
"When the data is staring you in the face," he said, "you can't ignore it." As for Brett's laparotomy, that hadn't been in vain. The knowledge gained would be crucial to designing the most appropriate treatment. "You don't need the spleen," Canellos told him. "That's over." It was possible she would require only minimal chemo, along with radiation, "It would be worse," he said, "to have the disease recur following radiation, forcing her to go through the maximum chemo treatment then."
"The bottom tine in all this is that she'll be cured, one way or the other." His bold assertion pleaded for confirmation.
"It's not a hundred percent," Canellos replied, "as I told you."
Dana Farber was universally recognized as one of the premier cancer treatment centers. In his daughter's case they had missed what UCSF had discovered, and they would have treated her unsuccessfully. They might have gotten lucky, Canellos had suggested. How much was luck and nothing but luck? What had they overlooked in San Francisco, for all their high-tech apparatus, because they didn't know how to look?
He'd called Sloan-Kettering in New York and managed to speak to a woman who specialized in Hodgkin's disease. Sloan-Kettering didn't use MRI in such cases either. As the doctor got the drift of his phone call—Had Dana Farber culpably omitted necessary procedures?—her tone became impatient. Look on the bright side, she advised. It was fortunate they'd seen the cancer in California. His daughter's prognosis was very good. As for the most suitable chemo regimen, George Canellos was the man to consult. He knew more about MOPP and ABVD than anyone in the field.
Francine Halberg, Brett's radiation oncologist at UCSF, had said that there they would have reduced the tumor in her chest with radiation immediately, before the surgery, just to be sure they had it under control. There was no way of knowing whether that would have happened or not. It seemed the radiation oncologist wouldn't have been called in until the staging had been done. Would they have taken an MRI prior to the splenectomy to establish the need for preliminary radiation? And if they had, would they have found the cancer to be too near the heart at that time? The truth was, they began to see, this so-called curable disease was far more complicated than they'd imagined or anyone had yet made them realize.
And it was lucky, wasn't it, that she had returned to San Francisco after all. At least, that's what he'd attempted to argue long-distance to somehow alleviate his daughter's anguish over the whole mess. Far from being comforted, she may have felt more alone with the ominous new verdict. All her luck! She was lucky it was Hodgkin's, she'd been told, instead of some worse lymphoma, lucky she'd discovered it at an early stage, lucky to have received the best available care at Dana Farber, and then she was lucky to be at UCSF where they could reevaluate all her previous luck. Andrew Leavitt had called him at that time, when they were developing a plan of treatment, and insisted that between Dana Farber, UCSF, and Stanford, with whom they frequently communicated, his daughter's case was getting the best possible attention. That thought was no longer as reassuring as it had been.
Following two cycles of MOPP, two months, an MRI scan showed the disease had been substantially reduced, and the consensus was—people at Moffitt had conferred with Stanford at something called a Tumor Board—that the risks of further chemo outweighed the benefits. They were convinced radiation was the best choice to complete the therapy. "I feel like I've won an Oscar," he remembered Brett saying. But radiation, once it began, turned out to be more problematic than they'd foreseen. Treatment had to be postponed when Brett's white count was down. In the first month, out of a possible twenty-seven treatments, she had received only fifteen. Francine Halberg spoke of her as an atypical case, a person with very sensitive bone marrow.
But then her white count did stabilize, she received the balance of radiation therapy on schedule, visualizing like mad, she said, and praying to a Chinese goddess. And then it was over. He had called George Canellos for the last time, he believed, and summarized the successful outcome. At UCSF they believed she stood an eighty percent chance of being completely cured. Those were good odds.
"We're assuming it's over," he said.
"You can't assume that," Canellos replied in the firm, rather dignified manner he'd cultivated over the years for just such sensitive discussions. He added, "A cure is a function of time."
And now ... the disease was present again in less than five months not years, and his daughter was facing the maximum chemotheraphy on top of what she'd already been subjected to. If she'd done the six cycles in the first place and been spared the splenectomy, spared radiation, everything might be different. It might really be over. There had been no way to make that call at the time.
Change one detail, and everything might be otherwise—or nothing might be otherwise. Questions oppressed him, and yet he was unable to see how they could have proceeded, detail for detail, differently. Throughout the past year he and his daughter had been as determined, vigilant, and questioning as possible, it seemed to him. He also believed that in Boston and then in San Francisco her doctors had done—they continued to do—all they could for her. In many respects, the sad truth was, they didn't know what they were doing.
They'd insisted on the bone-marrow harvest because they'd feared recurrence. Did that imply that something might have been, should have been, done differently? What did the doctors know or suspect now concerning his daughter's illness that they weren't revealing?
Leavitt had recently told him that the prognosis was less positive with patients who recurred so suddenly.
But it was not as though Brett's disease had recurred after maximum treatment or had turned up in a new site. The disease had arisen in exactly the same place in her chest. Wasn't it plausible that her recurrence represented cancer cells that survived the initial treatment? Two cycles of chemotherapy hadn't been enough, apparently, and the cells near the heart hadn't been subject to radiation. "Six cycles of chemotherapy will be a different story." Surely such considerations improved his daughter's prognosis.
MAN of the CENTURY
THE LIFE AND TIMES OF POPE JOHN PAUL II
By JONATHAN KWITNY
Henry Holt and Company Copyright © 1997 Jonathan Kwitny. All rights reserved.
TAILER
Table of Contents
| 1. Recurrence | 1 |
| 2. Cure | 37 |
| 3. Alone | 68 |
| 4. Distance | 94 |
| 5. Marrow | 117 |
| 6. Pain | 152 |
| 7. Home | 197 |
| 8. Autumn | 237 |
| 9. Snow | 274 |