The Boston Globe Magazine July 26, 1998 Alone Together Their shared illness, cancer, brought them to this
place. by Laura Pappano Wellness Community support-group leader Pamela Willsey is wrapping up the first meeting of what will become known as the "Thursday Group." Already one major hurdle has been cleared: Most of the six members, though they are meeting for the first time on this mid-October day, have no trouble speaking frankly. Joyce Holt, a legal secretary at Foley, Hoag & Eliot, has told of battling breast cancer after years of fighting alcoholism. Charlie Austin, a 52-year-old television reporter diagnosed with advanced prostate cancer three years ago, has admitted that there are times when "fear comes up like a monster. I dont cry a lot," he says, "but I cry a lot more than I used to." The conversation veers towards death--and veers away again. "What does survival mean?" Joyce asks. Then Willsey, who is guiding this meeting of cancer patients in Newton, sees that it is already several minutes past 4 p.m. "In a very short time, we have gotten to the important stuff that we will be talking about," she says. "But I realize we have already broken one of our first guidelines: ending on time." Introductions, first-day discussion of the rules and the commitment a support demands, and plain talk about Life With Cancer have swallowed two hours in what seems an instant. Almost everyone has jumped right in; only Julie Goldman, a fine-featured woman with dark, curly hair, has hung back. She mentioned working on a poem about how the support beams of a roller coaster make the ups and downs of the ride possible. It is important, she also observed, "to talk about weakness." But Julie has revealed little beyond the facts: She is 34 years old, and her breast cancer, once thought conquered, has recurred and spread to her liver and lungs. The four men and two women in this first group meeting--more will join in the weeks ahead, until they total a dozen--rise and join hands around the coffee table. People with very different lives but a common thread reach for one anothers hands. Heads lowered in thought and prayer. "Im happy to be here," someone says. Others echo the sentiment. Then silence and the contented sound of breathing. It is into this quiet that Julie releases a fragile, nearly whispered utterance. The words, like the image they paint, float alone. "I feel," she says, "like an autumn leaf falling to the ground." The Thursday group will meet in the same room every week. It is a comfortable but simple space: Three sofas form an uneven U around a coffee table, and a few upright chairs complete the circle. The colors are neutral, the lights low-budget halogen torcheres. The buildings systems, like those of its occupants, are not in perfect condition: On sunny days, the room grows hot, and the noisy fan makes it hard to hear. But even on an especially sweltering day, when members are offered a cooler space, they decline. The room, with all its imperfections, has become their nest, their refuge. This is what the Wellness Community is for. Unlike most cancer support groups, it focuses not on providing medical information but on giving emotional and social support, allowing patients to collaborate in fighting their disease physically and psychologically. "We really believe they know what is best for them," says Willsey, director of programming at the Wellness Community in Newton and an oncology social worker for 18 years. Group facilitators, who undergo rigorous training, handle conflicts, help members support one another, and at times push them to consider difficult truths. But it is the patients who provide a "therapeutic community." Some days they do it by telling jokes, spicy ones that make you laugh until you weep. Other days, there is not a container great enough to hold the pain. This group has allowed me to join them for six months and to take notes at weekly meetings and to witness the way a dozen people, connected only by common misfortune, forge bonds that transform them into an intimate circle. As the second weekly meeting gets underway, Willsey explains that her time with them is limited: She is pregnant, the baby is due in March, so at some point another facilitator will take her place. This week, too, there are new faces. One of them belongs to Anne Caputi. She is 40 and, so far, the person with the most recent cancer diagnosis. Willsey asks someone to read the weeks calendar of Wellness Community events, the ritual that begins each session. Anne volunteers. Then members introduce themselves, giving a "check-in" on how life is going. Jim Zien, a 50-year-old cultural planning and development consultant from Brookline, begins. He was diagnosed just over a year ago and treated for colon cancer, but he has happy news to add: Seven weeks ago, he became a grandfather. Charlie, the TV reporter from Lexington, checks in. He spent time the day before playing in the fall leaves with his grandson. Joyce, the secretary from Reading, checks in: Her breast cancer treatment ended in August and she has gone back to work two days a week. Julie is next. As she talks about herself--diagnosed with breast cancer at 31, surgery, chemotherapy, and radiation, and then, after 14 months, a recurrence--Anne sighs audibly. She, too, is young and fighting breast cancer. "The metastases are growing," Julie reports matter-of-factly. A graduate student in anthropology at Harvard, she is upset, but in command, as she lays out her dilemma: Should she have more chemotherapy, poison that will make her sick, buy her some time, but make it hard to do what she enjoys, teaching an anthropology seminar? Or should she just take what time is left without treatment? She is leaning toward no treatment. "In deciding not to have treatment, people perceive me as giving up," Julie says. "My family, they want me to fight like hell to extend my life as long as possible, but I dont know if prolonging things is better." Willsey says theyll come back to Julie in a few minutes, keeping to the standard routine of letting everyone "check in" before tackling a big issue. Ralph Lombardi, who is 51 years old and a construction project manager from Chelsea is next. Diagnosed in October 1995 with non-Hodgkins lymphoma, hes had chemotherapy and radiation. Manny Hamelburg, 57, of Braintree, is a 10 year survivor of prostate cancer that had spread to his bones, a fact that gives others hope of beating the odds. "Im doing fine right now," he reports. "My next check-up is December 15." Then its Annes turn. A smooth-skinned woman with a soft, deliberate manner, she grew up as one of eight children in a close-knit Italian-Irish Catholic family on New Yorks Long Island. She hesitates. "The first time I tell this to people, there are butterflies and waves of panic," she says, not revealing whether the panic belongs to her or to her listeners. She was diagnosed with breast cancer six months earlier. She has not had surgery to remove the tumor. She has not had chemotherapy or radiation or any other traditional treatment. Anne is choosing alternative medicine to fight her cancer. And while she is firm in her decision, she says it is tough for some to accept, especially family members and long time friends. Her partner, Nicki, worries, but she is by her side. Without articulating it, Anne is asking members of the group to support her as they support one another, regardless of her decisions about treatment. She needs a place to feel safe, a place where she does not have to justify her choices over and over. For Anne, herself an alternative health practitioner, the battle is not merely against cancer, but against the same expectations Julie mentions: how others think you should handle your disease. And while there is a bias against alternative medicine for fighting cancer, everyone in the room knows that conventional medicine doesnt have all the answers. For now, the group focuses on Julies dilemma. Members share observations and experiences but dont give advice. The decision is Julies. Her problem, she says, is that chemotherapy makes her so weak that it is a struggle to enjoy the time that she has. Months earlier, drained by the treatments, she traded chemotherapy for "Merlot therapy." But now, she feels the tumor growing, and lab tests confirm what her body tells her. Michael Campbell, 51, has multiple myeloma--as well as prostate cancer and routinely describes his condition as "terminal. He expresses a certain comfort with death. Still, he observes, "I tend to want to fight for life." His adult children are now opening up to him, asking for advice. He wants to be around to give it. "But what does quality of life really mean?" Willsey prods, in her role as facilitator. "What is my bottom line? And how can you know if you have never been down this path?" It is an emotional leap to be here among near strangers, talking about life and death not in the abstract but in tactical terms: When do you fight and when do you retreat? Anne leans forward, facing Julie, to make a serious point that she poses as a question. "Youre giving yourself permission to change your mind at any time? Especially since youre the only one walking in those shoes?" During the next few weeks, members of the Thursday group settle in. They talk about the sober and the sublime, about how people constantly tell you how "great" you look when you feel lousy (and probably look lousy, too), about the fear of recurrence, and about coping strategies. Julie, ambivalent about the group at first, is feeling more connected. Even though she tires easily, she says, "I am teaching and loving it." And her mother, Florence Berlin, has begun accepting what parents fear most: losing a child. "My mom had a certain sound to her voice," Julie says, reporting a phone conversation. "She said to me, Julie, I can handle this. She also acknowledged that I am dying, in a way that was powerful and constructive. It is hard to hear such words. But when Julie speaks them, they are not words of terror, but of comfort, the sound of a burden lightening. Her sister begs, still, for Julie to have chemotherapy; Julie tries to explain that it might delay, but will not change, the outcome. Julie has also told her academic adviser of her cancer, bringing tears. "I hate the way this impacts on other people," she says. It is a theme that returns again and again. Ralph tells how his wife, Andrea, found a lump in her breast that turned out not to be cancer. "She said, I feel bad saying it was benign. I said, Be happy. Be happy for both of us!" Although everyone in the room looks healthy, even robust, they all understand how quickly the score can change. Charlie says he had a pain in his hip but feared the test that might tell him the cancer is back, spreading to his bones. He went for a bone scan and sweated out the anxious 48 hours between the test and results. At a November meeting, he describes the call from his doctor and his reaction: "I hung up the phone. Yes! Yes! Yes! Its only arthritis! Yes! Im getting old!" The reminders of cancer are everywhere. Anne says that she and Nicki avoid movies with a favorite Hollywood subject: illness and death. We look for comedy, Steve Martin in The Jerk," she says. Among the videos on the Do Not Rent list are Sleepless in Seattle (the wife died of cancer) and Marvins Room (its all about Marvin dying). Anne says even The Diary of Anne Frank is off limits: "I dont need more evidence of loss." On the Saturday night after Thanksgiving, the Comedy Studio, above the Hong Kong restaurant in Harvard Square, is packed. At least 50 people sit on folding chairs or stand in the aqua room with red curtains and gold dragons on the ceiling. Waitresses deliver bottles of beer on round, cork-lined trays. This is Ralphs graduation: The finale of his stand-up comedy class, taught by comic Rick Jenkins, is, fittingly, a performance. Many of the people here are Ralphs friends and family, including his wife and his daughters. But Ralph has another group of supporters, too. Members of the Thursday Group cluster against the back wall, sipping beers at high tables, looking like old friends: Charlie, Manny, Jim. Michael, often quiet but a powerful presence, grins through intense pain; he fingers a Percocet in his pocket, wondering if its time to take the painkiller. Ralph, dressed in a freshly pressed shirt and slacks, zips through the crowd, weaving, pausing, embracing. When his turn comes, he springs onto the stage, his blue eyes reaching out to meet, to hook, his audience. "Can you tell Im from Providence, Rhode Island?" he begins, and pauses. Theres laughter. His lines have been honed and timed, and practiced in front of his wife, before the inmates at MCI-Norfolk, where he regularly performs--and even in front of the Thursday Group. For Ralph, humor is the vehicle for coping with the fear, anger, and tension that cancer--along with the rest of life--brings. Part of his routine, in fact, deals with an earlier phase of his treatment, in which he was given radiation on the wrong side of his body. "After six weeks, they say, Oh, Mr. Lombardi, weve made a mistake." He goes on to desccribe how, after being marked with Xs over the sites to be radiated, he is marked with Os on the other side. He looked, he jokes, "like a tick-tack-toe board." Other jokes deal with his father, Vinny, described as self-centered and rejecting. Now that his father is old, Ralph says, "he suffers from garmentia--he loves to wear dead peoples clothes." Pause. Laughter. "This guy reads the obits to find someone his size." Laughter. The crowd is delighted, free from the worry you sometimes feel for performers, especially comics. Then Ralph says, "I was diagnosed with cancer." There is a hush in the room. "Hey, whats this silence?" he shouts. "Im. . . alive!" On December 4, Julie says she is considering chemotherapy to shrink her tumor, to buy herself some time. There are things she wants to do, including teaching another course. Shes not ready, after all, to die. "Its a funny thing," she says. "I think I have a choice. If I choose I want to live, I do." Cancer is not Julies only source of stress. Academic environments, especially institutions life Harvard, are high-pressure places. Julie, working toward her doctorate, has spent months observing and interviewing Chilean fruit pickers for her dissertation; that goal is receding as she marshals energy just to live. She rations trips out of her apartment, staying inside more and more, writing poetry and renewing her interest in pottery. But she still holds tight to the thing she loves and does so well: teaching. On a late fall afternoon in a Harvard seminar room, Julie greets students as they file in to her junior tutorial, an intensive course called "Think Globally, Act Locally: Latin America and the Global Economy." Julie, wearing a brown sweater with a silk scarf knotted at the neck, arranges a bottle of Poland Spring water and her notes, a single sheet augmented with Post-its filled with tiny, neatly rendered ideas. As the class proceeds, students pass cookies and orange sections. The atmosphere is collegial, but respectful and serious, And in this room, there is no cancer. The students do not know, and Julie does not give them any clues. It is, she says, her "safe space." For two hours, the talk is of sugar plantations in the Dominican Republic, cigar factories in Cuba, Columbias economy. Julie asks whether economic encounters can have a moral aspect, or whether capitalism is an impossible fit with local economies based on trading and relationships. Students respond. She presses. "Cant the contradictions coexist?" She is not speaking of cancer. But her everyday life demands that she allow the contradictions of wellness and illness to coexist in her body. Sometimes the tension is palpable for Julie, whose organized nature runs so fervently counter to the chaos cancer wreaks. The Wellness Community is closed for the holidays. But on January 2, an unseasonably warm and placid Friday, six members of the Thursday Group meet at Ralphs house in Chelsea. It is a stately Victorian on a hill, with a view of Boston. Ralph, dressed in jeans and sneakers, is the perfect host, scurrying to put away coats and offer sparkling water and beautiful, almost painterly food--a voluptuous bowl of fruit and a platter of Italian cookies and biscotti. Ralphs artwork is on the walls, his wifes collection of angels arranged in a glass case. Anne is not here, but she began her holiday with good news: Her practitioners say their tests suggest the cancer may be cutting off its blood supply, and a San Diego alternative practitioner says her "life force number" has shot up, indicating good health. "I can fight all the information and say its not true," she said at the last meeting. "We are either all collectively very wrong or on to something good." Charlie, too, is absent. He has been sent out to do a story on ski safety after Michael Kennedys accidental death. "Anybody think about all of us having cancer, and this 39 year old guy dies?" asks Joyce. "Theres no logic." Muses Manny: "We sit here thinking all these thoughts about death, and this guy, it probably never crossed his mind." The talk this day is casual, relaxed. It is more a time for reflecting and taking stock than for pushing the envelope. Manny, festive in a brightly patterned shirt and red suspenders, says he had a "wonderful checkup" and is happy to see 1998. "On New Years Eve, I kissed my wife, and she said, "You son of a bitch! Youre still alive!" Joyce says that this time last year--January 3--she started chemotherapy. "It was like I was on my deathbed," she says. "I remember asking, What is the statistic for people in my situation?" She was told one in three survive. "It took me a long time to ask what survive meant," she says. "When I asked, it meant 10 years." Julie has started chemotherapy again. Yesterday, she turned 35. Back at The Wellness Community on January 8, the table in the meeting room holds popcorn and cookies, remnants of the party food that seems ubiquitous this time of year. Manny is vacationing in Peru. Willsey, looking every bit the seven months pregnant that she is, reminds the group that they need to talk about a new facilitator. The issue is left untouched; there is too much else that needs attention. By now, the group has a character of its own. Members show real affection for one another, socializing outside the scheduled sessions, calling if someone seems off. Jim and Michael drive Julie to the meetings; a powerful bond is being forged. Jim is often quiet in the group, but one morning at home, his dog Jake at his feet, he admits he is now deeply engaged: "What it amounts to is, I feel as attached to people in this group as I do to most people in my life for the last 50 years." Today Julie reveals that she has skipped chemotherapy for two weeks because Bret, a fellow anthropologist and close friend, is visiting from Bolivia. Her undefined friendship with Bret, her sadness at his leaving soon, lead the group into a long discussion about intimacy. Julie feels very close to Bret but says the relationship is "an eternity without a future." She longs for physical intimacy." I want to be enveloped," she says. "This is not sexual. It has been years, absolutely years, since I have had someone hold me." And the cancer makes it harder. "What if, when I took my shirt off, I felt really beautiful," she asks, "and not like a Picasso painting?" "This comes up in other groups," says Willsey. "What happens when your body changes when you have cancer?" Joyce, who is 60, says that after her radical mastectomy, she never looked back. "The whole issue of losing a breast was easy for me," she says. "I wanted to get rid of the cancer. My beauty was never what I got by with. But Im not 35 years old." Charlie says he can relate. "Cancer," he says, "has stolen our intimacy." Charlie, the father of three daughters, including Danielle who has Downs syndrome and is legally blind, is no stranger to the stress of struggle. He has himself suffered a stroke and an aneurysm and constantly battles the side effects of drug therapies. On top of it all, there are times when Danielles health has been in danger and times when he and Linda, his wife of 30 years, are just exhausted. Intimacy, he says, was once "an elixir" that could lift the weight of the world. "But now," he says, "cancer gets in the way." Its one reason he and Linda have decided to sell their house and rent an apartment on the Charles River. Instead of waiting for some mythical moment to renew their lives, he says, they are doing it now. "We were joking that we get rid of everything, but we still have the cancer. Can we still get intimate?" he asks. "I hope so." As winter deepens, new members join the Thursday Group. Cynthia Jenkins is a competitive runner and professional fund-raiser, a charming and witty powerhouse who, just months before being diagnosed, was considering the job of executive director of the Wellness Community. She is 34 years old, now the youngest in the group, and she is scared. The problems came out of nowhere. In August, she felt weakness in her left arm and numbness in her face. An MRI, or magnetic resonance imaging, of her brain and spine revealed nothing. One morning in October, she awoke to acute pain in her arm and shoulder. Surgery and another MRI revealed a tumor, but no firm diagnosis. It wasnt until early December, when she consulted a doctor at Memorial Sloan-Kettering Cancer Center, in New York, and saw patients who had lost their hair to chemotherapy, that it truly dawned on her that she might have cancer. The whole idea is still very new, and Cynthia sits on the middle sofa in the meeting room looking exhausted. Twelve days ago she had a second lengthy surgery; her doctors are now recommending six weeks of radiation. They are also talking about intensive chemotherapy that would require months of hospitalization. But Cynthia says the only treatment study for a tumor like hers had just 20 people enrolled. Ten patients had radiation, and 10 had radiation plus chemotherapy. Cynthia concludes that its too small a sample to justify six to nine months in the hospital. For now, she has told her doctors no chemo. "I hope its the right decision," she says, weeping. "I have been through spinal taps, CAT scans, MRIs. It has kind of been a lot." A few weeks later, she will have a diagnosis: malignant nerve sheath tumor on the brachial plexis, an area between the top of the lung and the shoulder. Still filled with fear, she will tell the group how she stopped next to another car at a red light and saw the other driver smoking. She rolled down the window. The other woman did the same. And Cynthia found herself calling out a warning: "I am 34 years old, and I have cancer, and you should think twice about smoking! It is really terrible for you!" Even on this first day, her vulnerability, the shattering of all that came before, is palpable and painful; there are moist eyes around the circle. Julie, who is sorting out class sections on the first day of the second semester, is not here to help. The next week brings Anne Powers, a small woman with sky-blue eyes, auburn hair, and a Southern lilt to her voice. Unlike Cynthia, whose intense emotion drew the groups attention and empathy, Anne focuses the group simply with her presence. She is dying. She is 47, the single mother of a 16-year-old daughter, and cancer is taking her life. "Im from the South," she says, when it is her turn for introductions. "Ive only been up here a year. Ive been diagnosed with liver cancer, and its past the point of chemo or radiation. It was right at Thanksgiving. I wasnt supposed to make it past Christmas, but here I am chugging along. . . I wanted to get to know other people with cancer, because I feel like I am on another planet. I am really glad to be here. I dont know how long Ill be here. But Im glad to be here." Anne is not fighting. She is accepting, not merely that she has cancer, but that it is ending her life. Right now, as she enters the lives of these people, she is also leaving. It is that powerful combination of living and dying in the same breath that evokes both fascination and fear. Anne is a reminder, just in case anyone could ever forget, that this cancer thing is for real. Meanwhile, Anne Caputi is nearly celebrating. "I got good news on Tuesday," she says. "There is nothing abnormal in my blood at all." She still has a "situation" is her breast that she says resembles mastitis. But her caregivers are suggesting her cancer is gone. The range of emotion is almost numbing: They have run through death, fear, joy, in just minutes. But the group seems able to hold it all. When Julie speaks, she does not focus on herself but turns to Anne Powers and Cynthia, the newest members. "Welcome," she says. "This is an incredible group." She tells them, what they must feel already: that it is hard being new when everyone else knows each other. But stick with it, she says, and "you get enveloped." She grins. "I had a big revelation," she says. "Its about love, in the big, overarching spiritual sense. There is the kind of love that fills our heart. And there is the kind of love that is hard-won." She uses Charlies love for his daughter Danielle as an example, the way the strains and demands of bringing up a handicapped child make him focus on appreciating exactly who she really is. "The natural kind of love is a beautiful thing. But that hard-won love pushes us to expand out hearts, because it gets us to love in ways we didnt even think were possible," Julie says. "I was realizing . . . I have come to the point where I can feel a greater acceptance about the way my body is." For Julie, who has in the past been depressed enough to consider suicide, it is a turning point. Even as her body betrays her, she can love it. Even as she mourns the loss of her breast, she finds beauty in who she is. Others will observe later that she seems to be rising heavenward, even as she walks on earth. A tear slips down Charlies cheek. He does not wipe it away. One a morning in late February, Anne Powers its on the sofa of her sister Marthas home in Westwood, drinking tea and trying to summon the energy to speak. She is receiving hospice care, and that means her main goal--from her caregivers point of view--is to keep pain at bay. She has a continuous dose of painkillers, administered in pills and through transparent patches that cling to her skin. But even as her energy slips away, her appetite dwindles, and her ankles swell, she feels an urge to contribute. She is crocheting blankets for crack-addicted babies. She also uses a computer to link to the on-line world of cancer support, though sometimes, Anne says, the relentless messages to keep fighting get to her. "I got blasted on the Internet because I said I was dying of cancer," says Anne. "Someone said, No! Youre living with cancer! But sometimes you have to face things directly. You cant beat around the mulberry bush with something like this." Downstairs is the bedroom where Annes teenage daughter, Erin, sleeps. Anne knows Erin will be well cared for by Martha, but parting with her only child is unspeakably painful. Anne has been a single mother since Erin was 8 weeks old. Lately, says Anne, Eric has crawled into bed to sleep beside her. The bad news came just as new possibilities were entering her life. A year ago, Anne reconnected with an old boyfriend, and in June she and Erin moved to Maine to live with him and his son. But shortly after the move, she felt intense pain in her belly; it turned out to be cancer, spread over 75 percent of her liver. Anne says she never felt angry about her diagnosis. "The doctor came in and said, Im sorry, Im so very, very sorry," she recalls. "He said, You know about Mickey Mantle, right? I thought, Oh yeah, he died of some disease. I said, I get what you mean. I left the doctors, and I was driving along thinking, Oh well, heres a twist in my life." At Thanksgiving, Anne was told she had just months to live, and in January, she and Erin moved from Maine to Westwood. Anne says that her deep religious faith has made the prospect of dying bearable. "Everybody should have this time to prep," she says. "I definitely believe when I die I will raise up and enjoy a new direction and a new adventure. We are trying to think of what to put on the memorial card--I think something like Here she goes again! Dying should be a joyful thing. I can sit and cry at the drop of a hat at what I am leaving behind. I can sit and cry that I will not see my daughter graduate or get married. But those are all material things. I will be in another place, where those things wont mean a hill of beans." She pauses for a moment, this tiny woman with the riveting blue eyes. There is so much calm, so much bravery. "I havent told anybody this," she says softly, "but I kind of look forward to it." Anne Powers makes it to the Wellness Community the next day, February 26, one of those unexpected 50-degree winter days. The Thursday Group has now reached a dozen, with the addition of two new members in recent weeks. Thelma Golembe, 75, is a sharp-witted woman who has lived long enough not to fear saying whats on her mind; she has lung cancer, the result, her doctors say, of 48 years of smoking. Ten years ago, she was treated for breast cancer. She has joined the group because she wants to deal with her new cancer better than she did with her last. "This time," she says, "I decided I wasnt going to be such a damn fool and push people away." Geri Malter, a 53-year-old from Newton with liposarcoma, is also new. A veteran of the cancer fight--she has had her disease, a cancer of the soft tissues, for 15 years--and of support groups, Geri adds the steady voice of experience to the weekly session. And today, Steve Maurer, another facilitator at the Wellness Community, is here to get acquainted with the group. He will fill in during Willseys maternity leave. Willsey tells everyone to keep their check-ins "very, very, very short--otherwise, we wont have a meeting." They travel around the circle, rapid-fire: Joyce, Manny, Cynthia. "Ralph Lombardi, non-Hodgkins lymphoma. I find out in April if I need more chemo," Ralph says. "Badabing!" "I feel like Rowan & Martin," says Anne Caputi. "Only youre the straight man." She pauses. "Get it?" The room erupts in laughter. Julie says she has written a poem about the group, called "Survivors." She reads it aloud, and it is as if the group is holding its breath. She has put into words what they mean to each other using the image of daffodils. It becomes their defining symbol; one week, when Julie cannot come, Michael brings a small vase of daffodils for each woman in the room. Charlie says he is in remission and "doing great." Jim too, is doing well. Anne Powers says simply, "Im Anne. Im 47. I am not on any therapies. Just nudge me if I snore." The warm day makes the room hot. The air is like a blanket, thick, muffling, tired. "Whats the energy?" Willsey asks. "Were all fighting depression," Charlie says. Anne Powers says her father has not accepted her dying. "He is the one in the family who keeps thinking I will get better. Im not. Not unless a miracle happens. If a miracle happens, Im arms open." On Tuesday, March 10, Julie notices that she is bruising easily. She has a horrible headache and is almost too tired to manage a shower. She visits her oncologist, Dr. Lidia Schapira, who sends Julie to the emergency room at Beth Israel Deaconess Medical Center and orders tests. Julies left pleural space--the area between the outside of the lung and the chest wall--is filling with fluid, making it hard for her to breathe. There is also evidence of disseminated intravascular coagulation--DIC--which Schapira describes simply as "a monster. The patient is essentially bleeding from everywhere." In the hospital, Schapira pumps Julie full of clotting proteins, fresh plasma, and blood--but two days later, she hasnt improved much. Schapira transfers Julie to the intensive care unit, and her condition seems to stabilize. Then, on Friday afternoon, March 13, Julie goes rapidly downhill. Fluid is backing up into her lungs, stealing the space she needs to breathe. At 5 p.m., with her family gathered, the decision is made to classify Julie DNR, meaning "do not resuscitate"; caregivers will help Julie, but without putting her on a respirator. If she survives, it will be her bodys doing, not the result of medical heroics. Family members and friends speed to the hospital. Members of the Thursday Group call each other, and several go to the hospital, where they hear Julie is not expected to make it. Though they have known Julie could die, they are shocked: They havent been letting themselves believe it. Eyes are swollen with tears, throats clamped tight. Ralph and Jim visit Julies room, sneaking in a daffodil--no plants are allowed in the ICU--and pinning it to the wall. For a moment, Julie lifts off her mask and, pointing to the crowd in the waiting area, tells them in a half-conscious stupor that "there are some good things about cancer, and this is one. And then," she adds, "theres the sucky part--all these tubes." Then, from somewhere, Julie summons strength, and she begins to improve. By 9 p.m., she has turned a corner. "For some wonderful reason, her respiratory distress had stopped," says Schapira. "She was able to breathe easier." The ordeal has worn on Julies mother. Her eyes are rimmed with red as she pushes through the doors of the ICU, walking the familiar path she has paced over and over. She says she cannot imagine life without Julie, and then she sweeps back the hospital curtain to reveal her daughter lying there, eyes closed, oxygen mask over her nose. Julies black hair is pushed away from her face, which is pale and gritty with dried moisture. This compulsively neat, careful dresser is carelessly covered in a blue johnny, her legs jutting out. A thin hospital blanket, its folds articulating the exhausted terrain of her small body, spills off the edge of the bed. Julies mother, radiating the surprising energy born of relief and exhaustion, gazes at her baby. "She has bought herself another day," she whispers. When visiting hours begin on Monday morning, Julie is sitting up in room 435, out of intensive care, holding court and making jokes. Her room is brimming with flowers, especially daffodils. Her younger sister, Denise, sits on the foot of the bed; she tells everyone the funny things Julie said on painkillers, like asking for dough to make tortillas, even though she has no idea how to make tortillas. "When youre on morphine," Julie tells her, "you feel you can do anything." Three days after Julie is sent home, she is back in the hospital. The monster, DIC, is at it again. Julie is given heparin, a medication that halts the process, but it could stop working at any time. Julie is no longer well enough to live on her own. On Monday, March 30, a week into this hospital stay, Julie is hard at work. She has an answering machine hooked up, a headphone nearby, a notebook on the tray table in front of her. The notebook, bought last fall, was supposed to be a log of symptoms, but that only lasted a week. Instead, it has become a time capsule of this period of life, with anthropology class notes, journal jottings, errant thoughts, and poetry. Now she adds another subject: hospice. She gestures to a floral-covered binder by the window. This, she says, is where she is going, to the Stanley R. Tippett Home, in Needham. Julie says she doesnt want to die in her mothers new home in New Jersey or in her apartment in Cambridge, which she shares with two roommates: "I want my spaces to be living spaces, where I have been vital and not sick," she says. It seems unnatural that this young woman, whose friends are having babies and careers, is readying herself to live and converse and share meals with people more than twice her age. But for Julie, it is also a relief. Now she can acknowledge the tremendous pain she lives with, the sharp, searing ache in her abdomen. Patients often hide their pain from oncologists, Schapira says, because they fear it signals more bad news. Julie, who enjoys pottery, has started working with Sculpey, a modeling medium that is softer than clay, and easier to mold. She shows her latest creation: a miniature trunk, 3 inches long, in a rich auburn, with golden straps and tiny dark specks for the tacks that hold them firm. "This," she says proudly, "is to pack up all my troubles." These weeks for the Thursday Group are particularly intense. There is so much need, so much raw emotion, it sometimes seems there will not be time to reach everyone. Anne Powers misses several sessions; when she comes, she sinks into the sofa, speaking little, but seeming to find solace in the sound of voices as she drifts off, awakens, and listens some more. Anne Caputi, who is still trying to find out whats wrong with her breast, is leaving March 29 for two weeks in San Diego with a homeopathic practitioner. "A number of tests have said the cancer is gone, and I am going to have treatments to clear up what we believe is the aftereffect," she says before leaving. Thelma, who felt hopeful after surgery for her lung cancer in mid-March, says nervously one afternoon that there is new evidence of cancer growth. A few weeks later, she arrives at the group meeting tearful, without hair, a light blue turban around her head. While her medical oncologist was coming up with new plans, making her feel hopeful, her radiologist, she says, was very negative. He made her feel it wasnt wise to even make dinner reservations or buy theater tickets, because she wasnt going to live that long. He was stealing her hope. "When I said to him, What about attitude? he said I only think about physical things. I told him he should not treat me like a disease. I expected a little humanity out of him. I said, I feel discarded, like a dirty bandage." Geri is getting ready to have surgery on April 1. A few days before, on her last day of work as an ultrasound technologist, we visit her oasis of a room on the second floor of her brick colonial home. It is impeccably neat, a contrast to other rooms, which brim with her husbands journals, books, and papers. She lunches on Jarlsberg cheese and Bremner wafers, plays the violin, pets her cats, and talks. Geri was diagnosed with liposarcoma 15 years ago when she was 38. Over the years, she has had 10 surgeries, radiation, and chemotherapy. Despite all the treatment, though, the tumor is growing again. Geri says the group allows her to talk about fears others have trouble hearing. "People who have not had a serious health problem dont understand," she says. "They just want me to say, Im fine." Anne Caputi returns from San Diego and reports to the group that she "had a wonderful trip, but the treatment didnt do what we hoped. We are back at a very confused place." After a year of fighting her cancer, hearing that it had been conquered and then that maybe it had not, Anne feels as if she is back at the start. "The biggest thing that is haunting me right now," says Anne. "is: What if we have been massively wrong?" By mid-April, Julie is settled in the Tippett Home. She grew up in New Jersey, and this, she says, is the "nicest place I have ever lived." She loves her room, with its dusty-rose walls, white trim, and arched window. The room is adorned with photos, flowers, a bottle of Merlot, and a painting Ralph gave her--the view from Ralphs window, with daffodils shooting up into the frame. Below the watercolor, he has mounted a copy of her poem "Survivors," and the group members have signed the white mat board. "Today is a very slow-moving day in my brain," Julie apologizes. She is now on a constant dose of morphine to dull the pain, and she begins each day by putting ice on her thighs, preparation for the first of two daily heparin shots, which she dreads, but which so far have kept the "monster" in check. She shows her legs, mottled with bruises in all stages of healing: black, purple, green, yellow. There is almost no unmarked skin. Still, Julie now more than ever wants to prolong her life. "Whats always on my mind is how lucky I am and how perverse, how ironic that is," she says. "There is a sense of peace inside me that makes me want to live more." With her dissertation a distant thought and her teaching career vanished, Julie now reaches for a new goal. She wants to see her poems published. Before she joined the group, Julie says, she had concerns about being with people so different from her, particularly the men. "I am tofu-land, Miss Spirituality," she says. "I didnt think they would connect with that. I never expected to love Ralph, Charlie, Jim. But they have all given me comfort I didnt have coming from anywhere else." Sometimes, though, Julie feels frustrated by it all. "This dying thing," she says, "is not what you think it is. Its mundane. You make mistakes. You get cranky. But there is also a way in which the dying part becomes everyday. It still doesnt feel like its really going to happen." On April 28, a Tuesday, Ralph is in room 272D at Massachusetts General Hospitals cancer center infusion area to receive a newly approved drug he hopes will eradicate his cancer. Although the drug, rituximab, is not technically chemotherapy but a genetically engineered treatment, he will spend four to five hours hooked up to the same IV lines that deliver chemotherapy. If all goes according to plan, Ralphs own immune system will destroy the remaining lymphoma cells. By midmorning, Ralph is finishing a Danish and bantering with the nurse who is taking his vital signs. For Ralph--as for many patients--treatment is an active, even upbeat time; you are fighting your cancer. Ralph has brought a jar of water, paints, and brushes; his watercolor pad is open to a new sheet, and his hope is great. His doctor comes in and looks approvingly at his previous paintings. "Maybe youll see me hanging in a Newbury Street gallery," says Ralph. "Maybe by my neck." Two days later, on April 30, Charlie is at his home in Lexington dressed in jeans, a polo shirt, and a WBZ cap. His job is to clean the master bathroom, bring trash barrels out for the garbage trucks, and stay out of the way of the movers. There is a "sold" sign in the front of the house where he has lived for 15 years. "Im trying to get sad," he says, "but I just cant. Were moving to another level." Anne Powers dies on May 14, a Thursday at 10:30 p.m. Ten days later, on a glorious afternoon, about 50 people gather for a memorial service at a house in Brookline with spacious grounds, its long drive shaded by mature trees. By the entrance are pots of tomato and basil plants that Anne raised from seedlings, mementos for guests to take home. In a room with folding chairs, a woman with an earthy voice sings, hums, sings. Anne wanted a celebration, and the word "celebration" is printed on the program, but the service is mournful. Some of those closest to her, their faces wet, cannot speak at all. Inside the program are pictures of Anne as a child, young woman, mother. It is hard to see these images--of Anne balancing baby Erin on her knees or sitting by a swimming pool in denim cutoffs--without aching at the cruel surprise concealed in her future. During the services, Michael, smart in a blue suit, steps to the podium to talk about Anne and honor her powerful presence as a member of the Thursday Group. He takes a folded sheet from his breast pocket to read a poem, he says, by another member of the group, one who has now embarked on the same journey Anne has just completed. The poem is Julie Goldmans "Survivors":
We huddle together: I tell you about dark days, frozen soil, Inhaling warmth, a few days of sunshine, Sometimes we relive winter. This story is posted with permission from the author. No portion of this text may be copied, posted or otherwise duplicated or distributed without the author's permission. Laura Pappano is a visiting scholar at the Henry A. Murray Research Center at Radcliffe College. |