And in Health, page 1
“Shapiro is a triple threat: a psychologist who has been both a cancer patient and the spouse of a patient. He brings these perspectives to this terrifically helpful book that will assist couples as they face the challenges of serious illness. Lucid, practical, and informed by research and interviews with patients and their spouses, Shapiro provides a blueprint for managing the illness and succeeding as a couple.”
—Andrew Weil, MD, author of 8 Weeks to Optimum Health and Spontaneous Happiness
ABOUT THE BOOK
This book offers engaging and digestible lessons for couples navigating the life change that a cancer diagnosis brings. Dan Shapiro draws on his more than twenty-five years of clinical work as a health psychologist who has researched and worked with couples facing cancer, and on his own experiences of being both the patient (having and beating Hodgkin’s lymphoma in his twenties) and the supporter/advocate (when his wife was diagnosed with breast cancer) to weave together insights on facing cancer while maintaining a strong relationship. And in Health gives advice in short lessons on the main areas of concern or conflict that can come from life with cancer—from diagnosis to treatment and life post-treatment.
Topics include:
How to forge yourselves into a powerful team and evade common conflicts
Dealing with physicians and getting the best care possible, along with tips for navigating the medical world
Strategies for coping with the emotions that can interfere with your relationship—anger, mood swings, spouse fears, and depression
Distinguishing between supportive and draining people in your lives, and learning to invite and accept help
Opening to new types of intimacy and making peace with dependence
DAN SHAPIRO, PhD, is the Arnold P. Gold Foundation Professor of Medical Humanism and the Chair of the Department of Humanities at Penn State College of Medicine. He earned his PhD in clinical psychology at the University of Florida and went on to Harvard Medical School, where he completed his fellowship in medical crisis interventions. Shapiro is the author of Mom’s Marijuana, about his personal cancer experience, and Delivering Doctor Amelia, on his psychological treatment of a physician.
AND IN HEALTH
A Guide for Couples Facing Cancer Together
DAN SHAPIRO, PHD
TRUMPETER
Boston & London 2013
TRUMPETER BOOKS
An imprint of Shambhala Publications, Inc.
Horticultural Hall
300 Massachusetts Avenue
Boston, Massachusetts 02115
www.shambhala.com
© 2013 by Dan Shapiro
Cover design by Kathleen Lynch/Black Kat Design
Cover photograph © plainpicture/tranquillium
All rights reserved. No part of this book may be reproduced in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the publisher.
Library of Congress Cataloging-in-Publication Data
Shapiro, Dan, 1966–
And in health: a guide for couples facing cancer together / Dan Shapiro, PhD.—First edition.
Pages cm
eISBN 978-0-8348-2890-2
ISBN 978-1-61180-017-3 (pbk.)
1. Cancer—Patients—Family relationships. 2. Couples. 3. Caregivers. I. Title.
RC262.S458 2013
616.99′4–dc23
2012043419
For Terry, who held my hand when the storms came.
And came again.
He is the cheese to my macaroni.
—Diablo Cody, Juno: The Shooting Script
Contents
Acknowledgments
Introduction
1. Things to Know Immediately
2. Navigating Your Relationship through Early Challenges
3. Conquering the Medicine and the Medical Team as a Team
4. Learn to Deal with the Emotions
5. Having a Great Relationship during Treatment
6. Work Together to Get What You Need from Outside People
7. Let’s Talk about Sex
8. Closeness and Making Peace with Dependence
9. Navigating Our Relationship at the End of Life
A Few Last Words
Notes
Index
About the Author
Acknowledgments
I am grateful to the many couples and individuals who shared their experiences and generously allowed me to tape and quote them. Notably, every person I spoke with contributed a piece of wisdom. Over the years I’ve also learned a great deal from courageous patients who came to me for couples counseling. Their insights formed the backbone of the book. I thank Alma Jeanne Brandt and Dee Bailey, who transcribed all of the interviews. Dee Bailey developed an organizational scheme and while doing so noticed a few themes I’d neglected, and those became chapters. Dr. Kimberly Myers read the entire manuscript and provided line-by-line suggestions and, as always, optimistic, practical, and insightful feedback. I am also grateful to my agent, Rebecca Friedman, who gave early input, and to my hard-working editor, Jennifer Urban-Brown, who helped sculpt the manuscript. Finally, I am grateful to my family, who are, by now, accustomed to being exposed in my writing and still live with me despite this.
Introduction
Cancer will take you places you never thought you’d go.
—NANCY N.
She had a double mastectomy eight days ago. The surgery recovery has been painful, but now, for the first time in weeks, she feels frisky. And on a deeper level, she wants to feel sexy and attractive after spending the past week in hospital gowns tethered to IV poles.
Maybe these painkillers are loosening me up a little too. No matter, she’s going to have some fun. She carefully puts on the black underwear he likes with the cut that runs high on her thigh and wears a sweatshirt so that she can still move despite the tight bandages wrapped around her chest over the drains.
When he comes back into the bedroom she makes that little music sound she makes when it’s time. The one they always joke about that sounds like an X-rated movie soundtrack. She stands near the bed and swivels her hips, throwing her long hair back even a little more aggressively than usual so there can be no mistake.
He hovers in the doorway to the bedroom and squints at her.
She makes the sound again, louder, and this time, swivels her rear while looking away.
“Are you crazy?” he asks her, gruffly. “Damn, Susan,” he says. He spins on his heel and disappears into the recesses of the house.
And with these five words her sexy mood evaporates like vapor in a desert. Suddenly, her chest throbs. She quickly changes underwear, pulls on sweatpants, and climbs back into bed. He will never long for me again, I will never be sexy again. He called me crazy. What does that mean? Am I crazy for thinking that all of my sexiness wasn’t just in my breasts? This conviction etches itself into her consciousness and stings.
She forges a brave face for the outside world, but she knows that her sexual side is gone and it haunts her more than fear of recurrence—it is harder than the burn from radiation, and it chips away every time she sees a romantic scene in a movie or watches a couple touching at the real estate office where she works when she feels well enough. She doesn’t worry that he’ll leave, but she tries to quietly say good-bye to that part of herself.
When I met the couple in my office, the dry had settled around them. It was a few months after treatment had ended. I gently asked each of them to describe their lives since the diagnosis, and on this, they agreed. It had been hell. Neither would talk much, which is uncommon in the beginning of couples therapy. Usually at least one member of a couple has a lot to say. I knew I couldn’t barge in with recommendations until we shared a better understanding of their experience, so I went slowly and sent them on date nights to stoke up the romance. I told them that when they were ready, we’d have some honest conversations. Before we could do that, we needed to find a small seed of affection and nurture it awhile.
And then about a month into therapy, while they were both outside raking leaves, he made the sound of that music. It had been more than eight months since they’d been sexual. Eight months of misery. She was angry at first, but then he looked so silly strutting around his rake, his flannel shirt flailing out like a girl’s dress. He offered his hand, and, confused, she took it, and then they were back up in the bedroom and it was awkward but OK, even though he didn’t seem to know what do with his hands anymore. And after, in the quiet, the anger and hurt lifted like a storm and poured down.
She reminded him of that day when she strutted right there next to the bed, and how horrible she’s felt, asexual, and alone. At first she thought he didn’t remember—he never remembers the moments that seem so massive to her—but he did, and he listened, to every word, and then, when she was done and it was all out, she half-expected him to bolt from the room and never return.
“Oh no, baby, you got it all wrong,” he said finally, taking her hand. “You had those drains and all them stitches. I was scared we’d rip something open. I’d hurt you. And besides, I knew . . . I mean, I was convinced in my heart that you was just doing it for me. . . .” And then he added, “This whole time I thought you hated me, I had no idea why.” Looking at this relationship from the outside, their anguish was preventable. These lovers both already had a heaping plate of cancer, they didn’t need an additional serving of loneliness, isolation, and self-deprecation. Ultimately, they were fortunate—f
In this particular case, I taught them about the benefits and problems with protection, a concept we’ll cover later in this book. But this is just one of the many predictable challenges cancer whisks into couples’ lives.
As I’ve struggled to understand my own relationships, and those of my patients, I’ve come to understand how easy it is to lose our mooring in the face of cancer’s visit. And how ironic it is that so many of us spin away from the people we love and need most as we venture into the foreign and hostile cancer world.
The stakes are high. The quality of our marriages and relationships appears to impact not only how we feel psychologically but physically, too. Researchers who have followed couples for up to five years—starting with the initial diagnosis—have found that individuals in distressed marriages recover more slowly from cancer treatment and have worse outcomes.1
If we scratch, like miners, beneath the surface, we find that we want the same things: To feel that in the abyss, there will be someone there with us. To make us laugh, to hold our hands, and to face the unknown, bravely together.
I wrote this book to help you stand together, shoulder to shoulder, wing to wing, in the doorway of the hostile unknown and emerge at the other end, still deeply in love, intimate, and even . . . when possible . . . frisky.
Your Tour Guide
I am not happy to have this expertise.
I would trade all the opportunity that has come packaged with my experience for a chemotherapy-free lifetime, but I did not have a choice. I’ll bring a few perspectives to this writing. First, and most important, I’ve played both roles. I’ve been the supportive spouse and the cancer patient.
For five long years during my early twenties, I battled a resistant, life-threatening lymphatic cancer. In the middle of that struggle I met, dated, and ultimately married my wife, Terry. Against the odds and after a significant amount of treatment, including a failed bone marrow transplant, I was cured, though I wouldn’t know it for years. And then, about twelve years later, Terry developed a serious breast cancer that also required significant treatment.
In addition to qualifications as a patient and lover, I’m a Harvard and University of Florida–trained clinical and health psychologist who has researched and worked with couples facing cancer. I also interviewed forty couples for this book—in every couple at least one person had cancer (a few had both had cancer, and one couple had chemotherapy at the same time!). Finally, I teach medical students and residents at a medical school, so I’ll bring a few observations about modern medical care, too—in particular, how the care we receive can cause friction between us.
I’m going to try to make this easy and fun to read with plenty of true stories and observations about real people. Along the way, I hope you’ll laugh with me a few times, and do some thinking, and in the end, have a thriving relationship.
A few words about organization. This book is written in short, digestible sections that are meant to be mosaic chips that stand on their own, so you can copy just one and share it. Whenever possible I’ll ground our discussion in real people’s experiences, provide quotes from other couples, and tell stories from our life. Taken together, the mosaic chips will fit together and tell our entire story, as well as provide a guide to most of the issues facing couples when cancer visits.
The first chapter focuses on things to know immediately, just after being diagnosed. Chapter 2 addresses early challenges as we adjust, as a couple, to treatment. The third chapter is designed to help you in interactions with medicine and medical teams. The fourth chapter, and one of the most important, will help you think about your emotional life as a couple during the cancer experience. If you read no other chapter, dig into this one. The fifth chapter focuses on life as we settle into new routines and offers specific advice centered on issues that frequently combust in couples facing cancer. Chapter 6 is about outside relationships and how they can help and harm us. The seventh chapter focuses on sexuality, a key issue for many couples going through cancer. The eighth chapter should help you think about two key issues in relationships during cancer: closeness and dependence. I’ve also included the ninth chapter, which looks at navigating our relationships at the end of life. Finally, there are a few words about generosity. We’ll commence with the key lessons you need at the very beginning, just after being diagnosed. Let’s get started.
1
Things to Know Immediately
If you’ve just been diagnosed, or your spouse has just been diagnosed, I’m sure your head is swimming. For many years I met with newly diagnosed patients, and over time, I developed a “Cancer 101” for couples that consists of three basic parts; all three are in this first chapter. First, I want you to know that even if your relationship isn’t perfect, you can still be effective. Second, I’m going to orient you to key relationships in your life now, namely your relationship with your physicians. I’ll especially explore how physicians are trained and how this impacts how they communicate. Last, I’ll provide some guidelines to help you avoid common conflicts during this period. The chapter has two additional issues that are both important: I’ll share some information about the challenges and benefits of doing research on your own; and for those of you of reproductive age, I’ll give you some guidance about preserving fertility.
I’ve got one additional note for you. As you read through this chapter it may feel that I’m making all sorts of recommendations about things you should do early on in your experience when you are both already feeling overwhelmed, afraid, and exhausted. It may be taking enormous effort just to get out of bed, and all of a sudden, you have a new full-time job in addition to all of your old ones. Remember, you only have to do what you have to do today—and if that’s too much to think about, just do what you have to do right now. You don’t have to cope with the entire cancer experience right now.
1-1. Even though our relationships are not perfect, we can forge ourselves into a powerful team.
How do you ever know you are inseparable? We all think we know. We thought we knew before the bug. But we do know now.
—MIKE PROCTOR
When we beat this we’re going to be a better married couple.
—TOBIN HODGES
Violins do not start playing when I enter a room, and my hair only rarely flows behind me when I ride bareback through a forest to save my wife from a dragon. Our relationship is not Hollywood perfect. Yours probably isn’t either. The good news is that they don’t need to be for us to be effective partners.
That said, it will be helpful for us to take a quick peek at our relationships and preferences to help us stave off predictable conflicts that sometimes arise early on in the cancer experience. There are two issues I want you think about now, and both concern how you interact with physicians.
1. You may approach authority differently.
2. Technical expertise and bedside manner may have different levels of importance to the two of you.
Let’s start by talking about physicians and their authority. I’m going to share some quick history about physicians and communication with patients to illuminate why some of these discussions aren’t optimal.
Cancer surgeries were first described around 1600 B.C.E., or even earlier, on papyri scrolls discovered in the late 1860s in Egypt.1 We of course don’t know if the Egyptian surgeons told their patients the truth about their diagnosis. But at least for the more recent two hundred or so years that physicians have known about cancer, they said little.
In the 1950s, and then again in the 1960s, researchers asked doctors if they told patients when they knew the patient had cancer. The vast majority, over 90 percent, said no. “It would be like putting a person in a concentration camp,” one of them wrote.2
By the late 1970s, the trend had reversed.3 By then, there’d been limited success with cancer treatments, the culture around authority had shifted, and physicians started telling patients the truth. Then we moved into an era of legalistic medicine—when physicians were occasionally sued for hiding patients’ problems from them—and the pendulum swung dramatically in the other direction. Now physicians often feel obligated to share any potential bad outcome—including obscure side effects of necessary medications.
