Newsletter #44–Oct./Nov. 1997
Book Review: Holding Tight, Letting Go: Living with Metastatic Breast Cancer by Musa Meyer
O'Reilly & Associates, 357 pp., $24.00
Reviewed by Susan Claymon
Musa Mayer has given us a gift that we have needed for a long, long time: an in-depth, truthful, personal and informative resource about metastatic breast cancer. I believe that this book will be as important to women with metastatic breast cancer as Dr. Susan Love’s Breast Book is to newly diagnosed breast cancer warriors. Musa is a woman living with breast cancer herself (fortunately no metastasis), and her previous book, Examining Myself: One Woman’s Story of Breast Cancer Treatment and Recovery, was our first experience with the beauty and truth of her writing.
Musa Mayer discovered the internet and the then newly created Breast Cancer List in 1994. She was fascinated by the remarkable group of women (and non-women) who posted messages daily from around the world. Musa found information seekers like herself “whose anxieties were allayed somewhat by finding out the facts. I felt right at home.” She realized that the “imponderables of breast cancer treatment and the diversity of medical opinions seemed only to emphasize how important informed self-knowledge really is as a basis for decision-making.” Wise words.
Those who read Holding Tight, Letting Go will be inspired and strengthened, as I was, by the articulate and courageous revelations from a wide variety of people. Musa developed a remarkable rapport with her subjects. “They knew of my deepest beliefs: that mindful exploration of the self is crucial if we are to be fully alive, that living fully is the best and only antidote to mortality, and that those on the edge of life can tell us more about this than anyone.”
Even though each person’s experience with metastatic breast cancer is different, it is always frightening and confusing to be confronted with that diagnosis, and it helps to know that others are willing to share freely and openly the things they have learned and experienced. “Hearing from these extraordinary ordinary people offers the hope that you, too, can cope with this disease,” Musa writes.
The book offers three important sets of tools: practical information (sorting out what is known from what is not known), common ground (the psychological and spiritual issues that are universal) and new sources of knowledge and hope (learning how to live with breast cancer). Musa notes that there is little written about the real experience of life-threatening illness. As a well-known medical sociologist says: “Illness is the total experience of living with the disease. Yet it is only the physical facts of the disease, and not the illness, that medicine deals with.”
Musa shares some elegant words about the people who have bared their souls to her: “Take some comfort in the strengths reflected here...These stories show that we are interdependent rather than independent, that we discover our best selves in relationship with others.” She adds that “by telling their stories and sharing their insights, it is their hope and my own that your journey will have been made less lonely and frightening.”
In addition to the intimate revelations, this book contains a wealth of commentary from physicians, researchers, therapists and others who focus their work on those with cancer. One example is a statement by a “decision specialist”: “Not running into controversy in breast cancer may be a sign that you need to gather more information! Although the lack of consensus about how to treat breast cancer can be frightening,...you can strive to craft a strategy which you believe makes the most sense for you. Aim to be comfortable and clear about the reasoning behind every breast cancer decision you make.”
A unique aspect of this book is the inclusion of revelations by partners of women with breast cancer. Also, there is an exhaustive resources section (over 40 pages), and the book has a website, which will include resources and a place for reader’s own stories.
If there is a shortcoming in Holding Tight, Letting Go, it is the need to have more women who are strong breast cancer activists talking about their advocacy work in depth as a vital part of their healing. I also wish that she had been able to include stories from underserved and minority women, to express a broader spectrum of opinion. Using only those who were on the Breast Cancer List at the time was a self-limiting choice.
In her first chapter, Musa writes the following words, which I would like to tattoo on my hand: “Holding Tight, Letting Go. Holding tight to those you love, to integrity, courage, to what matters most to you, to the promise of remission and even cure, to life itself. Letting go of your illusions of control, of immortality, of health and youth and beauty—and of the guaranteed future. Letting go of regrets and expectations, into the present moment in which you live, into your final moments and the mystery beyond.”