Holding Tight, Letting Go: Living with Metastatic Breast Cancer [Paperback]

Musa Mayer (Author)

Book Description

Publication Date: September 8, 1997

This is a book about life: the daily lives of ordinary people confronting a deadly disease.

Holding Tight, Letting Go offers the stories of 40 women and men as they struggle to come to terms with metastatic breast cancer. All aspects of dealing with the disease are covered here: from coping with the shock of recurrence and seeking information, to making treatment decisions, investigating alternative and complementary methods, and communicating effectively with medical personnel. Finding sources of emotional support from other patients and friends and dealing with relationship and family issues are often as important as managing the side effects of treatment and the pain and symptoms of disease progression.

Frank and moving descriptions from those who have been there make their stories meaningful to anyone who faces a life-threatening illness, whether they are talking about making end of life decisions, or keeping hope alive through spiritual connections, or seeking loving and compassionate care and the search for meaning in the midst of adversity.

Women with breast cancer live in fear of recurrence. For a third to a half of those diagnosed, the disease will eventually spread. When this happens, most people assume it means an immediate and grim death sentence. The eloquent voices in Holding Tight, Letting Go speak of a different reality: that women with metastatic breast cancer generally go on to live with their disease, often for many years, and that through facing this reality, and gathering information and support, the time that they have can be full and meaningful.

Of the dozens of books and other resources dealing with breast cancer, few discuss the realities of metastatic disease. Holding Tight, Letting Go gives a voice to the side of breast cancer no one wants to hear about, with stories of extraordinary ordinary people, forced by circumstance to call on resources in themselves and their families they never knew they possessed.

Editorial Reviews

Review

"An excellent book....If knowledge is power, this book will be good medicine." -- Dr. David Spiegel, Stanford University, author of

"For years there have been so many requests for a resource book on metastatic breast cancer. Advanced Breast Cancer fills that void and does a wonderful service to thousands of women by giving them the resources they have been seeking, the support they need and the hope that research offers possibilities for a longer life.... The information on handling emotional issues, treatment options, side effects from treatment, and managing pain will be used as a resource bible on how to cope with metastatic breast disease for years to come." -- Jane Rodney, Director, Breast Cancer Resource Center, YWCA, Princeton, NJ

"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." -- Breast Cancer Action Newsletter

"Real stories, well-researched advice and practical references that will be a lifeline for a growing group of patients, too often overlooked....This book should be part of every woman's treatment plan."(Amy S. Langer, Executive Director, NABCO (National Alliance of Breast Cancer Organizations)) -- Amy S. Langer, Executive Director, NABCO (National Alliance of

"While there are dozens, if not hundreds, of self-help books on breast cancer, relatively few discuss these and other realities of metastatic disease. This is the superbly-handled subject of Musa Mayer's sensitive and beautifully written Holding Tight, Letting Go...This is a courageous book that needed to be written, but few could have done it, or done it so well. As it explores some of the most painful questions humans can ask themselves, it never ceases to be a celebration of the human spirit." -- NABCO News, January, 1998

From the Publisher

Praise for Advanced Breast Cancer:

"I want you to know how much your book means to me. I am currently in treatment for breast cancer for the fourth time since 1987, second time for bone metastasis. I live in a small town and felt I was the only person in the world who couldn't get rid of cancer. Your book reassured me I had a lot of company, and has given me many role models for dealing with the disease. I thank you and those you profiled in your book for sharing their hopes and fears. When I mentioned your book to my oncologist, he asked me if I was frightened after reading about what I was facing. I had to reply that, to the contrary, it had given me courage to continue my fight." --Judith Neilson

"I found your wonderful book at UCLA Cancer Hospital. I am eternally thankful to UCLA for telling me about it. I had scoured book stores for sources of information on metastatic breast cancer. I believe yours is one of a few, if not the only, book out there that deals completely with metastatic breast cancer. I will be shouting its praises to anyone who will listen. I have read it twice." --Judy Conklin

"Such a book was desperately needed, and I will be pleased to promote it through the many women I know who are living with a diagnosis of metastatic breast cancer, and others who are interested. It may prepare many of us for a road that we hope we will never have to face." --Liz Whamond, President, Canadian Breast Cancer Network

"There is little information and support available for the advanced breast cancer patient. Each year I receive the Resource List from NABCO. I turned to the page on metastatic breast cancer/recurrence. Usually the only things listed deal with pain management and hospice. I have no pain and thankfully am not near hospice.

I was pleased to find additional listings this year, including your book. Immediately I purchased it. I started reading and quickly realized what a treasure your book is, just what I was waiting for. I also told my husband and two daughters (27 and 29) that I'd like them to read it. I requested that the center where I am treated add this book to the patient library which they said they will.

You answered a need that was lacking for most of us on the breast cancer journey. And you did it perfectly. Bless you for that. I had been putting off getting involved with the computer. While reading I knew I couldn't delay any longer. So you are directly responsible for my joining the breast cancer email list. I thank you for that. It is a gift." --Ruth Wolf

"I started to read it and cannot put it down! As a woman who was diagnosed with a primary breast cancer last year,I have found the book reassuring, and feel that you have chased away some of the scary monsters in the breast cancer closet. As a friend of someone with metastatic disease, I have found something that I know will give her great comfort. I will be purchasing another copy of your book so that I may keep a copy for myself and add it to my private lending library." --Norma Steele

"I was afraid to even open the covers of this bookit seemed like it was going to be too difficult a journey. Silly me! You were right there with me, holding my hand, gently taking me down the path. I started it last night and look forward to reading the whole thing." --Harriet Kay

"Your book truly is a gift to all women and those who love them. With tenderness and respect you wove the stories of these spirited survivors into an outstanding guide for fully living to life's end. The extensive resource list was a delightful surprise. What a joy to have the organizational web sites listed. As one of the early-diagnosed breast cancer survivors without a personal knowledge of chemotherapy, I found the glossary especially helpful." --Rosemary Locke

"I just finished reading your latest book, andwow!what a good one it was. I wish I could get more women to read it. I did ask our cancer center to add it to their library. I think it is a fantastic book and a must-read for all so that everyone can understand the realities posed by metastatic breast cancer. As I have said before, the women with metastatic disease do face life issues differently than those of us who are disease-free." --Lois Anderson

See all Editorial Reviews

Product Details

• Paperback: 510 pages
• Publisher: Patient Centered Guides; 1st ed edition (September 8, 1997)
• Language: English
• ISBN-10: 1565922549
• ISBN-13: 978-1565922549
• Product Dimensions: 8.9 x 6 x 1.2 inches
• Shipping Weight: 1.5 pounds
• Average Customer Review: 5.0 out of 5 stars  See all reviews (3 customer reviews)
• Amazon Best Sellers Rank: #893,914 in Books (See Top 100 in Books)

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Customer Reviews

Most Helpful Customer Reviews

16 of 16 people found the following review helpful:

5.0 out of 5 stars helpful and realistic, August 4, 1998

By A Customer

This review is from: Holding Tight, Letting Go: Living with Metastatic Breast Cancer (Paperback)

A personalized and at the same time highly informed guide to life with breast cancer. A subsample of highly articulate Breast Cancer Discussion List participants, who agreed to be interviewed by Mayer, are repeatedly quoted throughout, as Mayer invokes their voices and occasionally her own, to put the realities of life with cancer into an experiential context, then place these experiences into the appropriate wider context of medical expertise or psychotherapeutic wisdom. Topics covered: the shock of recurrence, treatment choices, complementary therapies, side effects, family and friends, remissions, disease progression, hard choices and last days. Well-balanced treatment of everything, but most crucially the controversial High-dose Chemotherapy decision. A truly impressive compendium of resources unfolds in Appendices B and C.

Mayer assumes (and this was news to me, unwelcome news) that a depressing percentage of those who are touched by breast cancer will event! ually, maybe in a few months, maybe in a couple of decades, have to deal with a metastasis. Life with the metastasis may then go on for another 12 or so years, even longer as new treatments come on line. There may be blissful further remissions during this phase or a lurching from crisis to crisis until the end. One husband of a breast cancer sufferer wrote of their experience: "This disease began as a mist, deepened into a fog, and ended like a tornado."

Life in this sort of world, similar in ways to life in HIV-land and both vastly alien to the world of the healthy, is made more tolerable by the companionship of others that is offered by books like this. Mayer's emphasis is on the real. "Real help comes from hearing real stories, and from learning you are not alone." "In real lives, along with precious moments of peace and transcendence, there is also pain and anger and a terrible sadness."

Will appeal to: People such as those rep! resented by the Breast Cancer Discussion List - educated, ! secular-but-spiritual, liberal and accepting of Western medicine.

7 of 7 people found the following review helpful:

5.0 out of 5 stars Musa has written the book I needed to find 5 years ago., October 7, 1997

By 

[e-mail] (Pam Hiebert - Portland, Oregon) - See all my reviews

This review is from: Holding Tight, Letting Go: Living with Metastatic Breast Cancer (Paperback)

When I was first diagnosed with metastatic cancer, nearly five years ago, my most difficult adjustment was facing the reality of my situation. Publications I desperately needed to read hadn't yet been written. Musa Mayer has written the book I needed to find five years ago. As a contributor, I wanted to cross over the ocean of suffering and connect to life. As the author, Musa has taken the larger step of daring to look beyond her own fears, to the reality of lives with metastatic breast cancer. She is able to demonstrate a reality filled with human emotion... beyond the blanket of fear. This is the book that would have taught me that I am not alone. The stories, the resources, a vision of a larger reality in a world of personal ambiguity. I am proud to have contributed to this effort.

2 of 2 people found the following review helpful:

5.0 out of 5 stars This is a "must" for anyone with a potentially fatal disease, October 1, 1997

By 

Dr. Karen M. Gray "kmgrayphd" (Hagerstown, MD United States) - See all my reviews
(REAL NAME)   

This review is from: Holding Tight, Letting Go: Living with Metastatic Breast Cancer (Paperback)

Ms. Mayer has used her own wisdom and the voices of people who have metastatic breast cancer as well as of their family, friends, significant others and breast cancer activists to explore the difficulties and possibilities of life with a potentially terminal disease. The book is inspirational, profound and practical. If you are human, you are likely to die of a terminal disease and you will find this book helpful in charting your course and making your journey through such an experience as positive as possible.