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
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
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
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 SusanLoveMD.com and WebMD.com. 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."