As the wife of a congregational rabbi in San Francisco, Erin Hyman was at first reluctant to let the synagogue community know she had been diagnosed with breast cancer. But thanks, in part, to a literary project, her reticence has been replaced by openness.
In fact, Hyman — whose husband is Rabbi Micah Hyman of Congregation Beth Sholom — is sharing her experience fighting cancer not only with congregants, but with the public at large in a newly published anthology. “The Day My Nipple Fell Off,” a collection of essays by Bay Area young women living with the disease, was published in May.
Hyman, a freelance editor and former literature professor, contributed an essay and edited the anthology. She and others will read from the book at Lit Crawl on Saturday, Oct. 19 in San Francisco.
The anthology is a project of BAYS, Bay Area Young Survivors, a support group for women who receive a breast cancer diagnosis at age 45 or younger. Only 5 percent of all breast cancer cases diagnosed each year are in women under 40, according to the American Cancer Society; however, the disease tends to be more aggressive in this group, which has a lower five-year survival rate (85 percent vs. 90 percent).
BAYS was founded in 2004 to address the specific needs and concerns of younger women with breast cancer, such as fertility preservation, according to Hyman, who currently serves as BAYS president.
“At first I wanted to be very private. I felt vulnerable,” said Hyman, 41, reflecting on her diagnosis. But her initial approach changed once she realized that by sharing and writing about what she was going through, she could engage in a meaningful dialogue about health and illness with people who genuinely cared about her.
Hyman started a blog (bmatzav.blogspot.com) as a way of coping with the disease and maintaining control of the information flow about her illness and treatment.
“I wanted to reflect my experience through a Jewish lens,” the Palm Springs native explained. “I wanted to tell people what was OK to ask me about, and what wasn’t. For instance, I don’t want people to ask me about my cancer at Kiddush, especially when my children are right there with me. I want to keep the synagogue a spiritual space.”
What she did tell people was that in December 2011, four years after she moved to San Francisco with her husband and two young sons, she discovered a lump in her breast. Tests showed that it was breast cancer, and that there were also some smaller tumors that she had not detected. Hyman underwent a double mastectomy and surgical reconstruction of her breasts. She had chemotherapy and is on anti-estrogen therapy. Recently, she shared with friends and supporters that she is still living with cancer.
Just as Hyman had initially been averse to telling the Beth Sholom community about her breast cancer, she was also less than enthusiastic about joining a support group. “Before I went to my first BAYS meeting, my only experience with support groups was in seeing them parodied in film and on TV. I had vague apprehensions about being subjected to tuna casserole, oversharing, or pious invocation of Jesus,” she wrote in the introduction to “The Day My Nipple Fell Off.”
“But what I discovered was a room full of women my age who were funny and engaging, and who just blew me away,” Hyman said.
Members of the group get together for monthly meetings as well as a variety of social, educational and breast cancer research fundraising events. “Our listserv is a great outlet to get people to rally around you and tell you you’re not crazy,” Hyman added.
It was Hyman’s idea to put together the anthology after learning that other BAYS members — professional and amateur writers alike — were also writing through their experiences with breast cancer. “Each story is different,” Hyman said. “Some are bizarre, some are heartbreaking, and some are hilarious.”
She solicited pieces from BAYS members, lightly edited them, and organized them into four sections: Medical Maze; Body Blows; Navigating Relationships; and Grief and Gratitude. For the anthology’s cover, Hyman chose a photograph by Lynnly Labovitz, a BAYS member who died in 2008.
All the personal stories are written with extreme candor and pack an emotional punch. The women write about everything from the shock of receiving a dreaded diagnosis, to the guilt associated with not being able to take care of one’s children, to the difficulties of dating after going through premature menopause.
There are humorous accounts as well, like the one by Google attorney Dorinda Vassigh, who made a special trip to a strip joint in Portland, Ore., to track down a stripper named Viva Las Vegas. The stripper had written a profound account of the health industry, breast cancer and her mastectomy in her memoir, “Magic Gardens.”
San Francisco therapist Laurie Hessen Pomeranz tells how a group of BAYS women ended up touching each other’s breasts in a restaurant bathroom (it all started with their wanting to check out one woman’s nipple tattoo on her post-mastectomy breast). Pomeranz also wrote the book’s title story, about her reluctance to let her irreparably damaged nipple dry up and fall off, followed by its mysterious disappearance once day. “My left nipple was M.I.A,” she wrote.
Hyman worked on the book, along with other writing and editing projects, throughout her treatment. “It has been important to have something to focus on,” she reflected.
For her, the varied experiences of the women reflect what Judaism teaches with the Mishebeirach, the traditional blessing recited for those who are ill or in need of healing. “It speaks of the healing of the spirit and of the healing of the body. The two are not the same,” Hyman said. “You can become cancer-free, but still be traumatized. And on the other hand, you can be in the metastatic group, but your spirit can be at peace and you can have greater acceptance of your situation.”
Hyman realized she wanted to be more open about her own situation in order to be able to accept her community’s love, support and guidance. “If people don’t know you’re still sick, then how can they say a Mishebeirach for you?
“There’s a cost to privacy,” she said, “and it’s one I decided I didn’t want to pay.”
Lit Crawl reading with BAYS and stripper Viva Las Vegas, 6-7 p.m. Saturday, Oct. 19, Public Works, 161 Erie St., S.F. Free. www.litcrawl.org/sf
“The Day My Nipple Fell Off and Other Stories of Survival, Solidarity, and Sass” (126 pages, CreateSpace Independent Publishing Platform, $8.99)