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Musa Mayer
Meet Activist Musa Mayer

By Nancy Keene

Twelve years ago, becoming an advocate for women with breast cancer was the farthest thing from Musa Mayer's mind. She was about to graduate from a graduate writing program at Columbia after spending a decade as a mental health counselor. Her first book, Night Studio: A Memoir of Philip Guston had been published and was receiving critical acclaim. She was finally pursuing a long-held dream of writing.

But in April 1989, a few months after her book came out, Musa was diagnosed with breast cancer and her life turned upside down. Instead of following her dream, she began feverishly researching her treatment options and reading everything she could find about the experience of living with breast cancer. Although not much was in print in the late 1980s, the breast cancer advocacy movement was beginning. Women were learning that the disease touched people's lives in complicated and interesting ways. They were banding together in support groups to share their experiences.

Halfway through her chemotherapy, Musa joined a support group, helping her to overcome the isolation and depression she felt. "The group was a real lifeline for me," Musa says. Eventually, she began writing again, using what she had learned in a memoir of her cancer experience called Examining Myself: One Woman's Story of Breast Cancer Treatment and Recovery. Published by Faber & Faber in 1993, it described her own experience as well as the stories of some of the women in her support group.

In 1994, Musa discovered the newly created Breast Cancer Listerv on the Internet. (To find out more about this free mailing list, go to Founded by Jon Church, a cancer researcher at Memorial University in St. John's, Newfoundland, the Breast Cancer List's membership soon exploded to several hundred. Men and women with breast cancer, their loved ones, researchers, and healthcare professionals asked questions, shared their hopes and fears, and offered practical and medical information.

Mailing lists not only function as a way for people around the globe to share information about the newest treatment options and cutting-edge drugs, but they also become close-knit communities. The Breast Cancer List that Musa has belonged to for six years organizes national and regional meetings, as well as many smaller gatherings, to which all list members are invited.

Musa says, "A V-formation of migrating Canada geese has become the List's symbol. As the goose flying in the lead position tires, another will take her place. The geese in front draft for those following behind, so that flying long distances takes far less energy. If one goose is ill or injured and can't keep up when flying, two other geese fall out of formation to stay with their friend until she dies or recovers. It's the perfect metaphor for our virtual community."

Sharing their journeys has given the group tremendous depth and compassion. Many members are treated and recover, having no further evidence of disease, but some do go on to have recurrences and eventually die from breast cancer. Though it's been hard at times, the group has not splintered into the newly diagnosed and those struggling with metastatic disease. In addition to offering emotional support and sharing their stories, the members of the list help one another research their particular medical situations and find clinical trials, and they offer their experiences with the latest treatments for both primary and advanced breast cancer. They stay in touch with members who are dying, memorialize them on the list, and share memories with loved ones. Musa says, "The benefits of our remaining one community have been enormous for all of us."

From reading the eloquent words of women and men dealing with advanced breast cancer, the germ of an idea for a new book was born. Musa had already felt the healing process of sharing her story in her own writing. Now she was seeing how it helped others in her online community. Many people, isolated in their homes in the late stages of disease and sometimes unable to share their thoughts and feelings with family members, poured their hearts out to their Internet community. As Musa wrote, "Both physical and emotional barriers of isolation imposed by advanced disease and difficult treatments were breached when connection with others was only a few keystrokes away. Over and over, I'd seen despair and terror, when expressed and confronted in a caring atmosphere, yield to acceptance and love."

From one another, these women and their families learned that advanced breast cancer, while generally incurable, can be treated as a chronic disease, often over many years. They learned that women have choices about how to live with advanced disease. Reading and sharing stories about how each of their families coped helped them to be fully alive, even when struggling with later stages of the disease. Based on these stories and on other extensive readings and interviews, Musa's book, Advanced Breast Cancer: A Guide to Living with Metastatic Disease (Patient-Centered Guides, O'Reilly & Associates, Inc., 1998) expresses the firm belief that knowing more about metastatic disease and the way others experience it can be of enormous emotional and practical help--not only to patients but to family members as well.

In addition to writing books and continuing to participate in online support groups, Musa leads writing workshops for people dealing with life-threatening illness. She believes strongly that emotional healing can come from expressing traumatic experience in writing. She says, "The act of writing itself creates meaning, which is transformative." Musa also is a contributing editor and feature writer for MAMM magazine, and a contributor to and She has participated in the National Breast Cancer Coalition (NBCC) training course, Project LEAD, and has been involved with the National Action Plan on Breast Cancer. In October 2000, Musa was recognized as one of three outstanding advocates by the NBCC at their annual gala in New York. She regularly attends many of the large medical conferences at which the latest breast cancer research is presented and closely follows the clinical literature. As a writer and patient advocate, translating the complexities of emerging research back to the breast cancer community is a priority for her.

Musa's varied activities over the past eleven years show her commitment to making sure that no person with breast cancer need face the struggle in isolation. She wrote in the preface to Advanced Breast Cancer: "Out of the pain and depths of illness, new and hard won bonds of love can sometimes be formed. Moments of beauty and clarity of mind can be savored. Meaning and renewal of faith can be pursued. In this book, you'll see over and over again how ordinary people in difficult circumstances are able to call upon resources in themselves they never knew they possessed. They have learned to reach out to others to give and receive support and help. They have moved from paralyzing anxiety and despair to a state of acceptance and intense aliveness in the moment. They have found ways to strengthen their faith and spirituality, to prepare and support their families and friends. They have done it, and so can you. No one has to take this journey alone."

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