Cynthia Hayes - The Big Ordeal

PRAISE FOR

THE BIG ORDEAL

The Big Ordeal addresses a critically important need for cancer centers and their patients to better understand the emotional arc of the disease and how to support patients through what is a physically and psychologically challenging experience.

STEVEN K. LIBUTTI, MD, FACS, Director, Rutgers Cancer Institute of New Jersey; Senior Vice President, Oncology Services, RWJBarnabas Health; Vice Chancellor Cancer Program, Rutgers Biomedical and Health Sciences

While important strides in cancer care have led to substantial increases in survival, the personal experience of having cancer remains extraordinarily challenging. In The Big Ordeal, Cynthia uses her knowledge as a cancer patient and her skills as an observer to present a message of understanding and hope for all those touched by the cancer experience.

GREG FRICCHIONE, MD, Professor of Psychiatry, Harvard Medical School; Associate Chief of Psychiatry, Massachusetts General Hospital; Director, Benson-Henry Institute for Mind-Body Medicine

The Big Ordeal is a vital guide for patients and family members contending with a cancer diagnosis, treatment, and life beyond. Interweaving the empathic perspectives of a survivor with grounding insights from the science of the stress response, fear, anxiety, depression, cognition, and resilience, this book provides a unique roadmap for an often disorienting and life-changing journey. With its double helix of heart and science, The Big Ordeal is a must-read for anyone trying to fathom the unfathomable.

JONATHAN ALPERT, MD, PhD, Chair, Department of Psychiatry and Behavioral Sciences, Montefiore Medical Center; Professor of Psychiatry, Neuroscience, Pediatrics, Albert Einstein College of Medicine

The Big Ordeal is a must-read for anyone facing cancer, as a patient or loving caregiver. Through her research with patients and experts, Cynthia brings new insights and understanding to the experience of cancer, helping to reduce the isolation, fear, and anxiety so common with a diagnosis. I witness the psychosocial challenges the diagnosis engenders on a daily basis and know that the empathy and intelligence shared in this book will help to ease the stress of a cancer care journey.

SHALOM KALNICKI, MD, FASTRO, FACRO, Professor and Chairman, Department of Radiation Oncology, Montefiore Medical Center, Albert Einstein College of Medicine

This book is intended as a reference volume only. It is sold with the understanding that the publisher and author are not engaged in rendering any professional services. The information given here is designed to help you make informed decisions. If you suspect that you have a problem that might require professional treatment or advice, you should seek competent help. Many of the names and identifying characteristics of the patients referenced in this book have been changed to protect their privacy.

Published by River Grove Books
Austin, TX
www.rivergrovebooks.com

Copyright 2021 Cynthia Hayes

All rights reserved.

Thank you for purchasing an authorized edition of this book and for complying with copyright law. No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means, electronic, mechanical, photocopying, recording, or otherwise, without written permission from the copyright holder.

Distributed by River Grove Books

Design and composition by Greenleaf Book Group and Mimi Bark
Cover design by Greenleaf Book Group and Mimi Bark

Publishers Cataloging-in-Publication data is available.

Print ISBN: 978-1-63299-335-9

eBook ISBN: 978-1-63299-336-6

First Edition

In loving memory of Amy,
with appreciation for all that she gave.

CONTENTS

FOREWORD

F or twenty-five years, I was honored to take care of hundreds of women who came to a small chemotherapy suite on the Upper East Side of Manhattan for treatment of their various gynecologic cancers. As their physician, I developed a close bond with each of these women and was privy to private conversations they shared with each other as they sat for countless hours while their chemotherapy was infused.

It struck me, in listening to the women, that very little of their conversation focused on cancer. Rather, patients shared freely how they tried to cope with the lack of control, the fear, and the anxiety that a cancer diagnosis brings. They talked about how cancer was changing their home lives, their work lives, even their intimate lives. The emotional toll united these women as they recognized that they were undergoing not only a physical experience but an emotional transformation that could be felt only by those who have a diagnosis or are intimately involved with someone who does. And through their conversation, they validated one anothers emotions, learned from one another strategies to deal with those emotions, and gained the strength they needed to get on with their lives.

One of these women was Cynthia. As a card-carrying member of this unique group of women, Cynthia always wanted to know the why and how of everything she experienced, physically and emotionally. As her physician, I did not have all the answers, but Cynthia was determined to find those answers, and she didnot just in her countless interviews with fellow cancer survivors, but through her in-depth research and interviews with experts in the field.

The result of her inquest is The Big Ordeal, which explores in detail the psychological turmoil that patients go through with cancer. It presents the typical emotional response to the disease at each phase in the process and shares the science behind those emotions and the collective wisdom of fellow patients and caregivers about managing them.

I would like to think that the chemotherapy suite was the cocoon that gave birth to this remarkable book. It provided Cynthia with an environment in which people were disarmedthey could let their hair down (or, rather, hang their wigs up) without being judged or embarrassed. It is a must-read for anyone entering the world of cancer for the first time, or the second or third time. It is a must-read for caregivers, friends, relatives, or coworkers of anyone going through the cancer journey.

ANN MARIE BEDDOE, MD, MPH

INTRODUCTION

N o one expects a cancer diagnosis. But that element of surprise, that jolt out of nowhere, becomes a defining factor in how we experience cancer, setting us up for the cascade of emotions the disease and its treatments will provoke in the weeks, months, and years to come. As unexpected as the diagnosis might be, the roller coaster of emotions that follows is actually somewhat predictableinstant panic and fear of death give way to stress, anxiety, feelings of isolation, and depression. These affect patients quality of life, hindering their adherence to treatment and often interfering with physical recovery.

Of course, our personal histories, DNA, diseases, and treatments influence how we internalize and express our emotions, but the patterns are far more common than we might expect. Nearly 70 percent of patients report feeling stress and anxiety; At the same time, most books for patients avoid or only graze the surface of emotional topics, focusing instead on the physical and leaving us in the dark.

The Big Ordeal: Understanding and Managing the Psychological Turmoil of Cancer addresses emotions head-on, validating patients feelings through survivors shared experiences and helping patients, caregivers, and even doctors better understand the emotional ordeal, the physical and chemical drivers of those emotions, and coping strategies to get through it all.