NIGHT REFLECTIONS
NIGHT REFLECTIONS
A True Story of Friendship, Love, Cancer, and Survival
ROBERT T. WINN, M.D.
WITH
TIMOTHY R. PEARSON
Humanix Books
Night Reflections: A True Story of Friendship, Love, Cancer, and Survival
Copyright © 2016 by Humanix Books
All rights reserved
Humanix Books, P.O. Box 20989, West Palm Beach, FL 33416, USA
www.humanixbooks.com | info@humanixbooks.com
Library of Congress Cataloging-in-Publication Data
Names: Winn, Robert Thomas, author.
Title: Night reflections : a true story of friendship, love, cancer, and survival / Robert Thomas Winn, MD.; with Timothy R. Pearson.
Description: West Palm Beach, FL : Humanix Books, [2016]
Identifiers: LCCN 2016017794 (print) | LCCN 2016029922 (ebook) | ISBN 9781630060701 (hardback) | ISBN 9781630060718 (ebook) | ISBN 9781630060442 (e-book)
Subjects: LCSH: Winn, Robert Thomas, Health. | Leukemia—Patients—Biography—Utah. | Cancer—Patients—Utah—Biography. | Leukemia—Patients—Family relationships. | Husband and wife. | BISAC: HEALTH & FITNESS / Diseases / Cancer. | HEALTH & FITNESS / Women’s Health.
Classification: LCC RC643 .W546 2016 (print) | LCC RC643 (ebook) | DDC 616.99/4190092 [B]—dc23
LC record available at https://lccn.loc.gov/2016017794
No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any other information storage and retrieval system, without written permission from the publisher.
Cover photo: Getty Images 186837005
Interior design: Scribe Inc.
Humanix Books is a division of Humanix Publishing, LLC. Its trademark, consisting of the words “Humanix” is registered in the Patent and Trademark Office and in other countries.
ISBN: 978-1-63006-070-1 (Hardcover)
ISBN: 978-1-63006-071-8 (E-book)
Dedication
To the countless patients and their families who have battled cancer together; to the many gifted researchers who have persistently advanced the science of treating leukemia; to the devoted staff of the trio of hospitals in which my beloved Nancy spent the better part of a year; to my late mother, who taught me the ideals that led to my own career in medicine, showed me how to unearth the goodness in others, and exposed me to the beauty and power of the written word; and finally, to the anonymous donor who altruistically gifted his bone marrow to Nancy and, in so doing, gave her a chance at life.
Contents
Foreword
Acknowledgments
Author’s Note
Prelude
The Beginning
As Sick as a Person Can Be
The Patient Who Stopped My Heart
A Life Turned Upside Down
Crazy in Love
A Rock in the Face of a Storm
The Importance of Kind Thoughts
The Exorcising of Demons
A Sack Full of Stones
The Hospital Roller Coaster
The Power of Determination
Hepburn and Tracy
Random Thoughts in a Dark Room
A Week Is a Very Long Time
A Mother’s Son
The Red Assassin
The Power of a Letter
A Glimpse of Nancy’s Garden
A Kick to the Groin
A New Perspective
A Half-Full Glass of Lemonade
As Close to Heaven as You Can Get
Cherishing Each Day as It Comes
Only in the South
Playing the Waiting Game
Beauty Is in the Eye of the Beholder
It’s All or Nothing
The Answer Is “Super”
Laughter Is the Best Medicine
No Worries
Anger Isn’t a Bad Thing
A Day Full of Promise
A Day of Less Promise
Singing in the Sunlight
Christmas in July
A Trip to Normal
I Yam What I Yam
A Tip of the Hat to Chemotherapy
Parting Is Such Sweet Sorrow
Donuts and the Nadir
An All-Too-Familiar Question
A Wait Well Worth It
It’s Party Time
The Numbers Don’t Add Up, Part 1
The Numbers Don’t Add Up, Part 2
It’s as Clear as Mud
The Details Are a Little Muddy
The Large and Small of It All
That’s a Lot of Stuff
New Stories from Cancerland
Smiles All Around
The Perfect Vacation
Two Is Better than One
In Search of Mecca
Perfection Is in the Numbers
The Many Kindnesses of Those around Us
Free as a Bird
Nectar of the Gods
Another One Bites the Dust
Laughter Is the Best Medicine
When Final Really Is Final
Merriment in a Dark Time
A Journey of Daydreams
The Last Supper
The Transplant Shuffle
Luck Is Believing You’re Lucky
Pleasant Dreams, Sweetheart
From This Day Forward
The One Redeeming Quality of a Crocodile
The Angels Were with Us Last Night
Nancy Has Begun Drinking Again
The Two Unspoken Words
The Engraftment Blues
One More Bite of Oatmeal
A Real Reason to Give Thanks
A Jumbo Pillbox
Ask and You Will Get Answers
The Merry-Go-Round Goes Round
Balancing on a Tightrope
So You Think You Can Dance?
The Best Christmas Ever
Stepping Up Isn’t Hard to Do
A Holiday Miracle
A Christmas to Remember
Warts and All
Tonight’s the Night
The New Normal
Sharks in the Water
A Single Blade of Grass
A Shining Light
An Age-Old Ritual
The Mother of Good Fortune
Thoughts on Kissing a Fashionista
The Real Deal
The Best Gift of All
The Good, the Bad, and the Ugly
The Good, the Bad, and the Ugly
The Good, the Bad, and the Ugly
This Isn’t Our First Rodeo
The Best Laid Plans
The Essence of Happiness
A Toast to Regularity
A Very Important Anniversary
Hope instead of Uncertainty
Such a Long, Long Way
A Great Day for a Haircut
Growing Up Is Hard
Christmas in April
Transplant + Two
Castles by the Sea
Conclusion
Finale
About the Authors
About the Leukemia & Lymphoma Society
Foreword
A diagnosis of acute myeloid leukemia is a shocking, disorienting, terrifying event. Only a month ago, your life was unfolding as usual. Only one week ago, you sensed something wasn’t quite right, noticing just a bit more fatigue and a few unexpected bruises. Only a minute ago, you heard your doctor declare that you have leukemia. Without therapy, you are told that you will likely die in a few weeks and that the only alternative is to receive intensive chemotherapy—which itself could kill you. If, following initial therapy, you are fortunate enough to
enter a complete remission, you are advised that you will need further treatment to keep the leukemia from recurring. Later, you will have to make a decision between receiving additional chemotherapy versus undergoing a bone marrow transplant, one of the most crucial and anxiety-producing decisions in all of clinical medicine. Simply, it could happen to any of us, and it did to Nancy Winn.
In Night Reflections, Robert Winn, himself a physician, describes the roller coaster events following his wife’s diagnosis of acute myeloid leukemia. The book is medically and scientifically accurate. More importantly, Dr. Winn’s story is remarkably open, unguarded, and intimate—a personal journey of discovery, friendship, love, and ultimately survival. Dr. Winn’s willingness to candidly explore and expose his own vulnerabilities provides an honest look into the tumultuous and sometimes chaotic events experienced by a caring husband and family as a loved one faces a potentially fatal illness. I believe that almost any physician, staff member, patient, patient family member, or friend will come away with new insights and understanding after reading this moving memoir.
Nancy Winn was blessed to have a supportive husband and family. She was also fortunate to be treated in the current era rather than a few decades ago. Medical advances have been significant in many ways. Although the treatment of acute myeloid leukemia still leaves much to be desired, there has been noteworthy recent improvement in outcomes. Today, the risk of dying from a complication of chemotherapy has dropped remarkably, mostly due to the development of better ways to combat infection. With this advance and the development of new chemotherapies and refinements in their use, cure rates with chemotherapy alone have increased from 15% to almost 50%. Outcomes with bone marrow transplantation have likewise improved over the last several decades, and cure rates of 65% are now regularly reported. The credit for these advances goes to the scientists and clinicians who developed and tested these new approaches. But enormous credit should also be given to the countless patients who willingly participated in the clinical trials that were required to test these new approaches and demonstrate their effectiveness.
Nancy Winn did not have a matched sibling to serve as a donor but rather received her transplant from an unrelated volunteer donor. The first transplant from a matched unrelated donor was reported in 1980. It was obvious from the very beginning that if unrelated transplants were to become widely available, a very large donor registry would have to be created. Remarkably, today over 25 million normal individuals have agreed to be typed and entered into an international registry to provide bone marrow for individuals they have never met and to do so for no financial or other reward. While Nobel prizes and honorary degrees go to leading scientists and clinicians, there are many other heroes in the fight against leukemia, including past patients, volunteer donors and societies, and supportive, loving family members like the Winns.
Frederick R. Appelbaum, MD
Director, Clinical Research Division, Fred Hutchinson Cancer Research Center
Head, Division of Oncology, University of Washington School of Medicine
President, Seattle Cancer Care Alliance in Seattle, Washington
Acknowledgments
When my wife, Nancy, was diagnosed with an aggressive form of acute myeloid leukemia, our lives changed forever. Overnight, our world went from the normality of daily life to one tumbling and careening out of control. For the next two years, we existed under the dark uncertainty of a life-threatening disease and amid the roller coaster of tests, treatments, and hospitals. My escape was my medical practice, and my only comfort was the unwavering support of our families, friends, and our community. Heartbreakingly, I simply began to cry whenever I was asked about Nancy.
Since it was so much easier for me to write than to talk, I began composing letters on many of the evenings that I sat quietly and resolutely beside my acutely ill wife in the soft, flickering nighttime lights of her hospital room. My middle-of-the-night updates became the way for me to share our journey with our friends and family. And over time, I came to learn that these late-night reflections depicting our struggles and travails touched the hearts of friends and acquaintances alike.
Critically, scores of our friends reassured me that it was all right to communicate with them during these hours of darkness. Their constant caring and expressions of encouragement allowed me to share my most intimate thoughts and fears. Without this positive feedback and overwhelming acceptance, I would not have continued my writings during those two years. To them, I will forever and always be grateful.
Shortly after Nancy’s final hospitalization, I received a very special gift from Edgar and Polly Stern, longtime friends of ours. Polly had saved each of my middle-of-the-night letters and compiled them into a compendium she titled A Love Story: Letters from Winnie. When I was given the twenty-five copies that Polly had self-published, she said, “At some point, your loved ones will want to read this story. It’s important. And you should consider sharing your words with others.” Polly possessed a gentle kindness and a gigantic heart. Her gift reflected her person: Caring. Insightful. Inspiring. Little did I know how important her gift would become—because I had not saved any of my writings.
Since then, a similar sentiment has often been expressed to me. Yet for many all-too-self-apparent reasons, I was always hesitant to revisit and retrace our journey, because to do so was simply too painful. But with the passage of time, I healed, too. The tipping point for me came at a most unexpected time and surprising place.
Late last year, near the end of the ski season, I was at a small, intimate dinner party in a mountain yurt on the upper slopes of the Canyons Ski Resort in Park City, Utah. Unexpectedly, I ran into Kristin Barber, who I hadn’t seen since she had been a nurse practitioner student in our office. She said, “Winnie, I’ve been wanting to tell you something important. You had an impact on my life.” She explained that she had asked to be on my mailing list and that my writings had influenced her career choice—she became an oncology nurse practitioner. Like Polly, Kristin proclaimed, “I hope you will publish your writings someday for others to learn from and find inspiration—just like I did.”
By sheer coincidence, Tim Pearson, a close friend and the brother of Tom Pearson, the two hosts of the evening’s affair (and himself an author who had written the critically acclaimed New York Times bestseller The Old Rules are Dead), had been talking with Kristin before my arrival. He listened thoughtfully to our exchange. “Would you like to publish your letters?” he asked. “Send me copies. I’ll give you my honest opinion and offer some suggestions on where to go with a manuscript.”
I don’t know if it was the wine, the circumstances, or both. I sent one of Polly’s compilations to Tim the next day. The rest, as they say, is history. With his unwavering, nurturing guidance and rigorous editing, Love Letters from Winnie was transformed into Night Reflections: A True Story of Friendship, Love, Cancer, and Survival. Our chance meeting led to both his ongoing sage counsel and his truly invaluable continuing involvement that challenged and sustained my efforts during our own journey of discovery together. This book is his as much as it is mine.
Author’s Note
Quite simply, I have always lived more in my head than in my heart. As a pediatrician and the longtime medical leader of both the Deer Valley Resort and the Park City Mountain Resort on-mountain medical teams, my early childhood predisposition and affinity to science (and ultimately medicine) has served me well. I have treated literally thousands of patients over the years. And I consider myself privileged to have been able to provide both care and consolation to those in need of my skills and talents.
On any given day, I can be faced with life-and-death decisions that require not only an understanding of human nature but also a vast encyclopedic knowledge of standard protocols, complex procedures, prescriptive approaches, and surgical outcomes. My decisions are carefully considered, patient centered, and caringly advocated. My patient’s lives literally depend on me. And there simply isn’t any room for errors in my
chosen line of work. (Or, for that matter, any practicing or attending physician. I am no different.)
I was born in what seems like a very different world than the one that we live in today. Penn’s Woods (or Pennsylvania for those not a product of the suburbs south of Philadelphia) was a simpler, more rural place than it is now. My parents were very “old school” and married after a short courtship when my mother was in her early twenties and my father was in his mid-thirties.
My mother was vivacious and a model of openness. She expressed her feelings clearly, honestly, and frankly. She possessed an ability to describe and illuminate the solution to almost any problem. And she naturally and freely displayed her emotions.
When my father died after a protracted and grueling battle with cancer, she was left to raise two children, and I was left at an early age to be the “man of the house.” This tumultuous time period transformed me, and I increasingly found ever-greater comfort in ideas, equations, books—as well as the quiet outdoors, where I could be surrounded by the smells, sounds, and wonders of nature.
As an adult, I have changed over time, but it wasn’t until I met and married Nancy that I truly became the man and husband that I am now. She changed my life. She changed my world. Simply, Nancy changed me in such a way that I could never again live as a man divided.
This is our story—a tale of despair, of love, and ultimately of survival. And, like all stories, it has a beginning—one that, for me, begins with the change of the seasons.
Prelude
As ski season ends in the Rockies, a jagged range of geologically complex mountains partially covered by glaciers and high peaks that I have called home for over forty-one years, snow still abounds in any direction the eyes pivot. Unfailingly, year in and year out, as April dissolves into May, frequent storms unleash walls of rain rather than the wondrous white offerings dumped with great abandon during winter. Colored rooftops quickly emerge from beneath what is always, for that time of year, still a thick blanket of winter snow.
In contrast, the lower elevations cling only to those last few white patches that are both north-facing and protected by tree shadows. The sun, which ascends ever upward into the sky, consistently raises the temperatures above freezing during most daylight hours. With each passing day, the snow retreats higher and higher up the ski runs toward the mountaintops while the water released by such rapid melting turns the ground beneath into vast archipelagoes of dark, thick, heavy mud.