Just Get Me Through This! - Revised and Updated. Deborah A. Cohen
journalistic brilliance and editorial rigor.
• My editor, Tracy Bernstein, who humored me past obstacles in the road to completion.
• And last, but far from least, my coauthor, Rob, who kept me on course when I began to stray, and calm in the midst of the storm, in more ways than one.
I feel honored and privileged to have had such a talented group of individuals providing such support, encouragement, and friendship throughout this endeavor.
Deborah Cohen
This book is dedicated to:
• My beautiful wife, Jody, and our wonderful girls, Madeline, Erica, and Jessica.
• My mentors and friends, to whom I owe more than I can ever repay—Anne, Arnie, Mort, and Rob.
• Deborah, who will always be an inspiration to me.
Robert Gelfand
A NOTE FROM THE AUTHORS
This book is intended specifically for women with early-stage breast cancer. Yes, “cancer” is a terrifying word that immediately conjures up visions of mortality and unfulfilled dreams. Yet with the miracles of the modern medical world today, early-stage breast cancer is, for the most part, a treatable, manageable disease. It will, as everyone will tell you, profoundly change you and your attitude toward life—life, not death. It will often be on your mind, just like any other chronic disease. Yet it need not diminish the quality of your long and healthy life. You will grow old, hopefully. And you probably will see the cure in your lifetime. We hope the advice and wisdom contained herein is helpful, insightful, and uplifting.
ACKNOWLEDGMENTS
We would like to gratefully acknowledge all those medical experts, other professionals, and survivors who graciously donated their time and insights. Your perspectives were invaluable in providing us with both factually correct information and a sound basis for forming the opinions expressed throughout the book on how to address a multitude of experiences and situations.
Overall Perspective: Andrea Martin, Executive Director, The Breast Cancer Fund, San Francisco.
Surgery: Eugene J. Nowak, M.D., New York Hospital/Cornell Medical Center, New York.
Medical Oncology: Larry Norton, M.D., Chief of Solid Tumor Medicine, Memorial Sloan-Kettering Cancer Center, New York; Greg Berk, M.D., New York Hospital/Cornell Medical Center, New York.
Radiation Oncology: Beryl McCormick, M.D., Department of Radiation Oncology, Memorial Sloan-Kettering Cancer Center, New York; Alison Grann, M.D., Department of Radiation Oncology, Memorial Sloan-Kettering Cancer Center, New York; Alfred Rosenbaum, M.D., Assistant Clinical Professor of Radiology, Mt. Sinai School of Medicine, New York.
Psychooncology: David Payne, Ph.D., Psychologist, Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York.
Dentistry: Thomas J. Magnani, D.D.S., New York. Alopecia/Hair Loss: Gwen Bourhis, Barry Hendrickson’s Bitz-n-Pieces Salon, New York.
Prostheses: Marion Kieves and Carol Art Keane, Underneath It All, New York.
Dermatology: David E. Cohen, M.D., M.P.H., New York University Medical Center, New York.
Mammography: Danielle Carbone, imaging systems specialist.
Gynecology: Charles J. Bacall, M.D., Attending Obstetrician-Gynecologist, Mt. Sinai Hospital, New York, Private Practice.
Alternative Medicine: Raymond Chang, M.D., Meridian Medical Group, New York.
Nutrition: Courtney Gravenese, M.S., RD, Clinical Research Dietician, Memorial Sloan-Kettering Cancer, New York; Betty Reiser, Director, SHARE: Self Help for Women with Breast or Ovarian Cancer, New York.
Financial, Legal, Employment, Insurance: S. Susan Slavin, Esq., Slavin Law Firm, Jericho, New York; Kelly A. Martz, President, Healthcare Administration Management Corp., Montebello, New York; Katherine Tsougranis, Human Resources, Pricewaterhouse-Coopers, New York.
Editorial: John Thackray, Editorial Advisor, New York; Judy Baron, Copyediting, Chicago; Nancy Cesari, President, NameLogic, Dallas.
Women Survivors : And a heartfelt expression of gratitude to the many truly amazing women I spoke with and interviewed, both formally and informally, especially Roberta F., Sara H., Kim O., Claudia S., Carolyn O., Kate M., Mary C., and Ellen G.. Your courage, spirit, perseverance, and candor should be an inspiration to everyone, and your advice and wisdom of particular help to all women yet to embark on their own unique breast cancer journey.
FOREWORD BY DR. GELFAND
Over the past decade there has been a growing movement in the practice of medicine—patient advocacy. Patients are increasingly taking charge of their own health and taking steps to be well informed and active in decisions about their own bodies. The passive patient with a “whatever-you-say-Doc” attitude is becoming the exception rather than the norm. However, in the case of a serious, complex illness like breast cancer, the proactive patient may end up confused, overwhelmed with information, and excessively anxious. The saying that “a little knowledge is dangerous” is apt for these situations. The acquisition of great amounts of technical information by breast cancer patients without medical training—from books or extensive exploring on the Internet—frequently ends up aggravating the anxiety. A lot of the questions that I get asked by breast cancer patients reflect their earnest attempts at self-education but also their minimal understanding of the complexity of the underlying issues, or knowledge of how the information should be organized and utilized.
Women with breast cancer, and their family and friends, most of all need a balanced approach to this illness. They need a basic road map to help them deal with the up-and-down journey from diagnosis into the world of the “patient” and back to the world of “normalcy”—a map that outlines the major phases of the process, offers guidance and insights along the way, and presents basic technical information in simple, understandable language. Just Get Me Through This! strives for balance through the collaboration of a seasoned professional and an intelligent patient. The result is neither a technical manual to breast cancer, nor a personal biography of overcoming breast cancer. Rather we have blended the perspectives of doctor and patient—enhanced by extensive conversations with other medical professionals, patients, and survivors—to offer readers a well-rounded, straight-from-the-shoulder view of the illness and of appropriate responses. We do not aim to be the only source of information and insight that you will need. We simply offer a foundation on which to build trusting, open dialogue not only with your health care team (e.g., surgeons, oncologists, nurses), but with family, friends, and even coworkers.
One of the most important and least written about aspects of breast cancer is the degree to which the diagnosis alters one’s life experience. By and large doctors do not prepare patients for more than the technical aspects of treatment. For example, doctors will go to great lengths to explain the powers of today’s highly effective antinausea drugs, but they will rarely help a patient manage the inevitable emotional traumas, anxieties, and practical difficulties of chemotherapy. Few surgeons will discuss the fact that a spouse or significant other might have difficulty coping with the results of a mastectomy or other bodily changes, and recommend ways to improve communication to work through such tough relationship issues. And who warns a patient of the possible coldness and even disappearance of old friends who are terrified by her cancer diagnosis because of their own issues with mortality?
Yes, it is wonderful and comforting to learn from your doctor that chemotherapy and all the other conventional medical treatments available today are typically well tolerated as long as the symptoms are managed well, and that by and large most women go on to live normal lives in the aftermath of cancer. Yet it is the nonmedical facets, the gestalt of the whole breast cancer experience, that most of the 200,000 women a year diagnosed with breast cancer are unprepared for. We have written Just Get Me Through This! to address that need. It is our hope that when you have turned the last page, you will