How East Bay residents today are living more comfortably with cancer.
Twice a month, on Saturday mornings, I lead a healing writing workshop for people living with cancer. In a large, densely furnished medical conference room at the Oakland campus of Alta Bates Summit Medical Center, 10 to 15 survivors—me included—turn our backs on the fleet of empty chairs that are filled, during the week, by the posteriors of physicians and hospital staff. (Survivor, by the way, is one of those shape-shifting terms. Right this second, a woman is getting her first bad news about a biopsy. Voilà! She’s a survivor. Right this second, another woman is about to die of cancer. Until she draws her last breath, she’s a survivor, too.) We shove together the long conference tables, light a candle, and begin to write.
Often, typical writing workshop fare—recollections of childhood, odes to nature, whimsical free association—emerges from our pens. But always, running between and beneath and through these narratives like Mercury, or a vein of gold, are ruminations on cancer’s fluctuating terrors and unforeseen gifts. The odd aches and lingering pains. The spiritual awakening that does or doesn’t transpire. The way people who have hair are afraid of those who don’t.
After writing comes reading. Aloud. Not to get all Hallmarky, but it’s a pretty profound experience to hear the phrases and paragraphs that survivors—some barely dinged by their journey through the cancer machine, others frankly ravaged—employ to tell their universal, idiosyncratic tales. Words hang in the air, often infused with the darkest humor imaginable—darker than chocolate, darker than coal. Coal, of course, is history, but it’s also fuel. So, for that matter, is chocolate.
“Writing together as people who live with cancer reminds us that we are not alone in our suffering,” says my mentor, Sharon Bray, a breast cancer survivor who leads expressive writing workshops at Stanford Cancer Center and at Scripps Green Cancer Center in La Jolla. The author of two books on writing and cancer, Bray says that “through the act of sharing our poems and stories, we build a strong and supportive community.”
“We write about cancer, yes, but gradually, we write about life,” says Bray, who also posts weekly online prompts on her website, Writing Through Cancer. “It’s legacy. Proof that we have lived, that our lives meant something.”
Hospital or holiday?
Studies over the past 20 years (chief among them the pioneering work in the ’80s of Texas researcher James Pennebaker, culminating in his 2004 book, Writing to Heal) have shown that writing about illness or other traumatic events can alleviate stress, promote white blood cell production, and promote a sense of well-being. No one is claiming that setting pen to paper, or fingertip to keyboard, actually cures disease. Surgery, chemotherapy, and radiation (“slash and burn,” survivors joke) remain the mainstays of the Western approach to cancer. So-called “complementary” practices like healing writing, says David Spiegel, a nationally renowned leader in the field of psychosomatic research and founder of the Stanford Center for Integrative Medicine, “should be a complement, not an alternative, to good cancer treatment.”
But much of Spiegel’s groundbreaking career has been devoted to investigating the benefits of innovations such as support groups and hypnosis for people living with cancer. Such practices, he has found—despite, in some cases, his initial skepticism—“can be very helpful in managing the stress of cancer and its treatment, accompanying pain, anxiety, depression, sleep disturbance, and other cancer-related problems.”
During the years that Spiegel has been accumulating data, cancer care departments and centers across the country have burgeoned with complementary options, many of them drawn from Eastern traditions, to alleviate suffering and enhance quality of life. Some—acupuncture, yoga, massage, Chinese and Western herbs—are intended to ease physical discomfort (or “pain,” in layperson’s terms) and build strength. Others—meditation, hypnosis, support groups, arts therapies—speak to calming minds and raising spirits.
There is no universally accepted list of complementary practices—the sensible, trend-resistant Mayo Clinic medical website, based in Minnesota, gives a thumbs-up to 11 complementary cancer therapies, including aromatherapy and tai chi; other institutions and practitioners take an even broader view. Context, however, is everything: A non-traditional practice—the use of herbal remedies, say, or finding strength in prayer—is considered complementary if it is used in addition to traditional treatment, “alternative” if it is used instead of traditional treatment.
“In the past, some doctors understandably did not like the word ‘alternative’ because it sounded like a rejection of all medical treatment,” says Leslie Paine, manager of Markstein Cancer Education and Prevention Services at Alta Bates Summit Medical Center in Oakland. And the notion of complementary care, it seems, may have been tainted with the same brush. The growing acceptance of complementary care over the past decade—and therefore, it follows, increased funding opportunities for it—has more than a little to do with semantics, suggests Paine, an energetic, upbeat woman who directed a branch of Planned Parenthood before joining the Markstein Center staff in 1981. “Now everyone understands what complementary care is. The confusion between alternative medicine and complementary care is over.”
Today, at local hospitals like Alta Bates Summit Medical Center and John Muir Health, as well as at nearby institutions like University of California, San Francisco (UCSF) Medical Center and Stanford University Medical Center, new patients are likely to receive, along with a diagnosis, a description of onsite and offsite complementary care options. At Kaiser Permanente, members are eligible for discounted complementary care from a contracted group of offsite practitioners.
Cancer virgins, take note: For some medical center services, complementary also means complimentary. While a major illness often means hemorrhaging money, (according to a 2007 article in the American Journal of Medicine, medical problems contributed to 62 percent of bankruptcies that year), there is seldom any charge for onsite exercise or relaxation classes, nutrition consultations, support groups, or health-related lectures. Individual treatments such as acupuncture, massage, and herbal formulations, however, are less likely to come gratis in the hospital package.
To some, the freebies are the equivalent of the mint on the pillow at the pricey hotel, or the complimentary digestif the waiter offers before presenting a staggering bill for the dinner that preceded it. As one of my survivor friends jokes, “You pay tens of thousands of dollars and they throw in a yoga class.”
Some places, they’ll even treat your cancer-free companion to a mini-massage. Waiting for a check-up at the Stanford Cancer Center last spring, I was offered bottled water and magazines by a volunteer, listened to a pianist tickling the ivories (grand piano ivories, at that) in the lobby, and observed patients and their family members enjoying free chair massages in a garden-side hallway illuminated by natural light and works of modern art. Except for an extraordinarily long line of patients waiting to check in for appointments, it felt a lot like waiting for a facial at a fancy spa.
“We live in a bubble in the Bay Area,” acknowledges Peggy McGuire, executive director of the Women’s Cancer Resource Center (WCRC) in Oakland, a 24-year-old nonprofit that offers free classes, a resource library, referrals, and peer support to help women make informed choices about their cancer care—including traditional, complementary, and alternative options. “There has always been a higher consciousness here, thanks to the human development movement.”
But, McGuire notes, many people with cancer—especially women of color—lack financial and other resources to get themselves into what she refers to as “a system of care”—let alone one that resembles a spa. My husband’s full-time job with good health care insurance makes it possible for me to pursue follow-up oncological care at the Stanford Cancer Center—where I could, if I chose, sign up for yoga, take Pilates classes, participate in a writing workshop, and so on. But “some women are undocumented, some have no time, some are working hourly jobs with no insurance,” McGuire says. “Of course they will not be aware of broader modalities [kinds of treatment].”
Charlotte Maxwell, an East Bay social worker who died in 1988 of ovarian cancer, deplored such inequities. A devotee of acupuncture and massage, she credited complementary therapies with enhancing the quality of her life during cancer, and wanted others to have the same experience, regardless of ability to pay. Today, the Women’s Cancer Resource Center refers clients whose income falls below poverty level to Oakland’s 20-year-old Charlotte Maxwell Complementary Clinic—a state-licensed, primary care clinic for women, named in Maxwell’s honor. “It’s the only organization of its kind in the country,” says Krista Alderson, the nonprofit’s executive director.
The growing, donation-dependent clinic (a second clinic was established in 2005 in San Francisco’s Mission district), which receives no public funding, has seen numerous “clients who are told they have six months to live,” says Alderson. “Ten years later, they’re still here, using strategic complementary therapies” along with traditional treatment. “They’re not cured, they’re not in remission, but they’re keeping themselves going.”
Lior Jacober, a single mother who lives in Oakland, has endured several bouts with lymphoma, a chronically recurring form of cancer, over the past two decades. For Jacober, the clinic’s homey environment reinforces the stress-reducing effect of the therapeutic massages she receives. “Settling down to a cup of green tea, having a healthy nosh, and even ‘shopping’ for quality clothing that is gently used are all part of the gifts Charlotte Maxwell offers,” she says.
Like the Charlotte Maxwell clinic, the newly renamed Cancer Support Community East Bay in Walnut Creek (up until last month, the facility was known as The Wellness Community) celebrated its 20th anniversary this year. Part of a federation of 50 related facilities across the country, including a newly opened branch in Mountain View, the Cancer Support Community offers support groups, drop-in art workshops, social activities, educational programs, and a menu of mind-body classes that includes tai chi, African drumming, acupressure, Pilates, yoga, and more. You might call it one-stop shopping—except that all the services, paid for through grants, sponsorships, and fundraising events, are free to those with cancer.
The Berkeley-based StressCare organization, which offers an intensive eight-week course of mind-body relaxation and pain management techniques, doesn’t label its services specifically as complementary cancer care. But the program, based on the methods of stress reduction expert Jon Kabat-Zinn, author of Full Catastrophe Living and Wherever You Go, There You Are, attracts people with a wide variety of illnesses, including cancer. The standard course runs $395—but some insurance companies help cover the cost.
In addition to large medical centers and small nonprofits devoted to the needs of cancer patients, many private practitioners work extensively—and pleasurably—with people with cancer. I once heard a massage therapist rave so extravagantly about a hospice client’s responsiveness to touch that I felt envious. As Sarah Puyans, a Rosen worker and meditation guide who volunteers at Charlotte Maxwell Complementary Clinic and the WCRC as well as conducting a private practice in Berkeley, says of her clients with cancer: “They are usually opened to a deeper level of their being. You just don’t encounter that in your everyday life as often as we do in this kind of work.”
De rigueur in the cancer community as among the general population, yoga remains one of the mainstays of complementary care. (Any day now, we’re apt to see Survivor Yoga Pants—perhaps embellished with a pink drawstring—on the market.) A soft-spoken, unprepossessing engineer who was born in India, Berkeley’s Bidyut Bose learned yoga first from his father, then from monks in the Himalayas. While coaching seniors through their downward dogs at the downtown Berkeley YMCA in 1998, Bose began to worry about other populations who might benefit from the practice—but couldn’t afford the cost of classes. Say, people with cancer.
“There is plenty of research evidence that chronic stress, which is endemic in cancer patients, compromises our immune systems,” notes Bose, now 58. “We also know that yoga is an optimal approach to stress management. Hence it is feasible that yoga has a beneficial impact on our immune systems.” Today, the Niroga Institute in Berkeley, which Bose founded in 2005, offers sliding-scale classes in healing yoga, as well as yoga therapy and workshops for many groups facing special challenges, including cancer survivors.
Hypnosis, aficionados say, offers many of the same benefits as yoga. Seth-Deborah Roth, a Castro Valley registered nurse and medical hypnotherapist, invites skeptics to close their eyes and imagine that they’re about to bite into a slice of pepperoni pizza or another food they enjoy. Usually, the mere idea of the tasty snack causes anticipatory salivation. “The brain doesn’t know the difference between reality and non-reality,” says Roth, who sees clients in private practice as well as at the Lolo Integrative Medicine Center in Oakland. In addition to teaching visualization and relaxation skills to decrease physical suffering, Roth instructs clients in techniques to “distort time, so that if they’re getting chemo for three hours, it doesn’t seem so long,” and how to tune out the negative “war stories and ‘I knew someone who had your kind of cancer and she died’” commentary that every cancer patient must contend with. Like other certified hypnotherapists in the area, Roth charges about $150 per hour, but offers reduced rates to clients with cancer.
Then there’s acupuncture. Carla Dalton, 64, a Berkeley acupuncturist who also counsels clients on nutrition and health-enhancing herbs, says the beauty of the practice is that it can be tailored to the individual. “We’re all designed with our own ecological system,” she says. “If I’m treating two different women who are receiving radiation for breast cancer, I’m going to treat them in two different ways.” A breast cancer survivor herself, and a founding member of the WCRC, Dalton says that her role isn’t just to perform acupuncture. “I’m also there to bear witness,” she says. And, when appropriate, to lighten the atmosphere with a touch of wry humor. (“Are you always so funny?” more than one new client has inquired, Dalton says.) Dalton charges about $80 for an hour-long acupuncture session, repartee optional.
Marion Coleman, a Castro Valley social services counselor and fiber artist who leads therapeutic art workshops with various groups (“I let them play with my sewing machine at Juvenile Hall!” she says), has never been diagnosed with cancer. But having lost a son to a brain tumor, she’s deeply aware that “all of us are impacted by cancer.” Last month, Coleman brought fabrics, glitter, and other “found” embellishments to the WCRC for a workshop in making fiber postcards. As with other arts-based therapies, the point was not for the participants to create masterpieces, but simply to decrease stress through self-expression and creativity. And, says Coleman, whose solo show, “The Art of Living Black,” will debut at the WCRC in January, through fun. “We work with our hands, we listen to music, sometimes we get up and dance,” she says. “It’s all about feeling better.”
Often, people who engage in complementary therapies report a greater sense of control over their lives.
“Meditation and yoga center me and focus my attention on ‘what is’ rather than on the 101 things that arise throughout the day,” says Berkeley resident Peter Boland, 65, who was diagnosed with early-stage prostate cancer four years ago. A health care management consultant and author, Boland participates in Dean Ornish’s lifestyle modification program for men with prostate cancer—featuring stress management, diet, exercise, yoga, and emotional support—through the Preventive Medicine Research Institute in Sausalito. “What we have control over is not only our choice to be present but how to be present,” says Boland.
For Marcie Beyatte, 58, developing her own writing practice fostered a welcome sense of autonomy. “I was Marcie-the-Super- Cancer-Survivor,” says Beyatte, a longtime Orinda bookstore employee who was treated for breast cancer at Alta Bates Summit Medical Center in 2003. “I was more worried about taking care of my mother and husband and son.” But in the many pressboard composition notebooks that she filled with uncensored poems and essays during her treatment, “I didn’t have to deal with everybody else’s fears, with them saying ‘No, don’t say that,’ or ‘Of course you’re going to be fine,’” says Beyatte, who now lives in Toronto. “Writing really helped me take care of myself.”
Perhaps a new DSM code is called for. While few people look forward to the next medical treatment or checkup, many, says Leslie Paine, the Markstein Services manager, become “junkies—in a good way” for complementary care. “One of the things that always amazes me is the reaction to our four-week Nourishing the Mind-Body Connection workshop,” she says. The course offers instruction in guided visualization, breathing for relaxation, and mood-enhancing motion. “The gist of it is,” says Paine, “that people keep repeating. They walk out of here feeling wonderful, and they know that if they come to this workshop, that for at least a short period of time they’ll be able to feel that way.”
Early on a recent Saturday morning, I stopped by a favorite Oakland bakery to pick up some pastry for my group of writers. (Apricot wreath or cinnamon buns? Such are the challenges a healing writing teacher must regularly confront.) Chatting with the pleasant clerk who boxed my purchase, I happened to mention that I was en route to a workshop.
Oh? What kind of a workshop?
“Writing,” I said, reaching for my debit card. “For people with cancer.”
“Oh, that must be hard!” the clerk exclaimed, her mouth suddenly curving downward like an unlucky horseshoe.
“No, it’s not,” I said, startled. “You’d be surprised.” And then I marched up the hill, lit a candle, and let the words I had been holding back—some honeyed, some tarnished and pocked—spill onto the college-lined page. All around me, pens were scribbling, and I felt the thrumming, human energy of a roomful of people just like me.
Autumn Stephens is co-editor of The East Bay Monthly, a freelance writer and writing consultant, and a nine-year breast cancer survivor. She lives in Berkeley with her nuclear family.
Following is a non-exhaustive list of local medical centers, institutes, and private practitioners offering complementary cancer care.
Cancer Support Community East Bay, 3276 McNutt Ave., Walnut Creek, (925) 933-0107; cancersupportcommunity.net.
Charlotte Maxwell Complementary Clinic, 610 16th St., Suite 426, Oakland, (510) 601-7660; charlottemaxwell.org.
Comprehensive Cancer Center at Alta Bates Summit Medical Center, 2001 Dwight Way, Berkeley, (510) 204-1591; altabatessummit.org/clinical/cccabout.html.
John Muir Cancer Institute, 1601 Ygnacio Valley Road, Walnut Creek, (925) 947-3322; johnmuirhealth.com/index.php/cancer.html.
Kaiser Permanente Oakland Medical Center, 280 W. MacArthur Blvd., Oakland, (510) 752-1000; mydoctor.kaiserpermanente.org/ncal/facilities.
Markstein Cancer Education and Prevention Services, Alta Bates Summit Medical Center, 3100 Summit St., Oakland, (510) 869-8833; altabatessummit.org/clinical/markstein_intro.html.
Stanford Cancer Center, 875 Blake Wilbur Drive, Stanford, (650) 723-4268; cancer.stanford.edu.
University of California, San Francisco, Helen Diller Family Comprehensive Cancer Center, 1600 Divisadero St., San Francisco, (415) 885-7221; cancer.ucsf.edu/afr.
HEALTH INSTITUTES AND PROGRAMS
Lolo Center for Integrative Medicine, 3300 Webster St., Fourth floor, Oakland, (510) 444-2772; loloclinic.com.
Niroga Institute, 111 Fairmount Ave., Oakland, (510) 451-3004; niroga.org.
Preventive Medicine Research Institute, 900 Bridgeway, #1, Sausalito, (415) 332-2525; pmri.org.
StressCare Training, 2001 Dwight Way and 3030 Telegraph Ave., Berkeley; 140 Brookwood Road, Suite 201, Orinda, (510) 540-8928; stresscaretraining.org.
Sharon Bray (traveling and online writing group facilitator), San Diego, (619) 410-3254; sharonbray.net, writingthroughcancer.com.
Marion Coleman (art group facilitator), Castro Valley, (510) 582-1464; marioncoleman.com.
Carla Dalton (acupuncturist), Berkeley, (510) 524-4812.
Barbara Hoffer, Montclair Physical Therapy and Wellness (postoperative Pilates for breast cancer survivors), 6125 Medau Place, Oakland, (510) 985-1861; back9pilates.com.
Sarah Puyans (Rosen bodyworker and meditation guide), Berkeley, (510) 531-2400; bodylistening.com.
Seth-Deborah Roth (hypnotherapist), 2881 Castro Valley Blvd., Ste. 3, Castro Valley, (510) 690-0699; hypnotherapyforhealth.com.