A Series of Catastrophes and Miracles
Page 1
ADVANCE PRAISE FOR
A Series of Catastrophes & Miracles
“Devastating and wise, clear-eyed and funny, A Series of Catastrophes & Miracles is a cliché-busting tour guide through a country no one volunteers to visit. This is a book for all the survivors of all the trials and journeys that make us who we are.”
—Jennifer Weiner, best-selling author of Good in Bed and Who Do You Love
“In writing a book not just about her own cancer but about the vexing history and science of cancer itself, Mary Elizabeth Williams has given us both a page-turning personal story and deeply informed look at a disease that fascinates even as it terrifies.”
—Meghan Daum, author of The Unspeakable
“I so admire Mary Elizabeth Williams’s gaze and candor, but most of all her humor, which keeps us great company in this touching book.”
—Jami Attenberg, author of Saint Mazie and The Middlesteins
“Mary Elizabeth Williams bares so much of her soul on the page—her joys, her fears, her suffering—we can’t help but fall in love with her. This is as real as it gets.”
—Susannah Cahalan, best-selling author of Brain on Fire
“Mary Elizabeth Williams is the funniest, raunchiest, smartest, science-geekiest guide not only to the cancer netherworld but also to the unvarnished reality of marriage, motherhood, and family.”
—Deborah Copaken, best-selling author of The Red Book and Shutterbabe
“Mary Elizabeth Williams’s story is harrowing, hilarious, enlightening—and above all, touched with the kind of grace that comes from having stared mortality right in the eye.”
—Gayle Forman, best-selling author of If I Stay
“Mary Elizabeth Williams offers an important lesson in how to endure the worst days of your life while remaining tough, tender, and funny as hell.”
—Sarah Hepola, best-selling author of Blackout
Published by National Geographic Partners, LLC
Copyright © 2016 Mary Elizabeth Williams. All rights reserved. Reproduction of the whole or any part of the contents without written permission from the publisher is prohibited.
NATIONAL GEOGRAPHIC and Yellow Border are trademarks of the National Geographic Society, used under license.
Library of Congress Cataloging-in-Publication Data
Names: Williams, Mary Elizabeth, (Journalist), author.
Title: A series of catastrophes and miracles : a true story of love, science, and cancer / Mary Elizabeth Williams.
Description: Washington, D.C. : National Geographic, [2016]
Identifiers: LCCN 2015033584 | ISBN 9781426216336 (hardback)
Subjects: LCSH: Williams, Mary Elizabeth, (Journalist),–Health. | Metastasis. | Cancer–Patients–Biography. | Cancer in women–Patients–Biography. | Women–Health and hygiene. | BISAC: BIOGRAPHY & AUTOBIOGRAPHY / Personal Memoirs. | BIOGRAPHY & AUTOBIOGRAPHY
/ Women. | HEALTH & FITNESS / Diseases / Cancer.
Classification: LCC RC269.5 .W55 2016 | DDC 362.19699/40092–dc23
LC record available at http://lccn.loc.gov/2015033584
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Interior design: Melissa Farris
eBook ISBN: 978-1-4262-1634-3
v3.1
For Debbie
Contents
Cover
Title Page
Copyright
Dedication
Author’s Note
Spoiler
Chapter 1: Cancer Club Night
Chapter 2: Best Summer Ever
Interlude: Cancer for Beginners
Chapter 3: Welcome to Cancer Town
Chapter 4: Off the Top of My Head
Chapter 5: Don’t Call Me a Survivor
Interlude: Immunotherapy 101
Chapter 6: One in Three
Chapter 7: Christmas Is Over
Chapter 8: Bad Hair Day
Chapter 9: Spring Breakdown
Chapter 10: Spring Breakthrough
Chapter 11: Wig Out
Chapter 12: Here It Comes Again
Chapter 13: The Storm
Chapter 14: Stage 4
Chapter 15: Lab Rat
Interlude: How to Make a Drug
Chapter 16: The Trial
Chapter 17: Hotel California
Chapter 18: The Valedictorian
Chapter 19: Side Effects
Chapter 20: It’s Not a Sprint
Chapter 21: The Veteran
Chapter 22: Truly Remarkable
Chapter 23: Where Do We Go From Here?
Chapter 24: The Graduate
Chapter 25: O-o-h Child
Chapter 26: Stage 5
Want to help?
Sources
Acknowledgments
About the Author
Reader Discussion Guide
Author’s Note
This is a work of nonfiction. I have tried throughout to present scientific facts and history as accurately as possible and to the best of my ability—albeit as someone with a decidedly unscientific background.
For the narrative aspects, I have relied heavily on the notes, date books, and journals I kept, my medical records, and the stories I published throughout the experience. I’ve also depended on the very generous cooperation of many of the individuals who were present for and participated in the events depicted. I am exceedingly grateful to them for letting me interview them, for giving me access to their own journals and personal stories, and for helping me reconstruct many scenes and conversations.
There are no composite characters here. Everyone within has a real-life counterpart. I have, however, changed names and identifying details of certain individuals to protect their privacy. I have also in a few instances condensed conversations and events—mostly involving doctor visits—that took place over more than one episode into single scenes for the sake of clarity.
There is no doubt that everyone involved in this tale has his or her version of how it all went down. This is mine.
Portions of this story have appeared, in slightly different format, in Salon and in the New York Times.
SPOILER:
I lived.
CHAPTER 1
Cancer Club Night
January 10, 2012
It’s a bad time for the phone to ring. Jeff is already down the hall at his caregiver group; Lucy and Bea are downstairs doing arts and crafts with the other kids in Noogieland. My own support group is just about to start, and our facilitator Marlena is strict that outside interruptions—and latecomers—are not tolerated. I glance at the phone and see that the call is from an unfamiliar number. Do I answer it and risk banishment, or spend the next two hours going crazy wondering who it was from—especially today, of all days?
The family started coming to Gilda’s Club in the fall—right after the rediagnosis—and since then we’ve grown to treasure our Tuesday ni
ghts here. It’s a weekly source of stability and support in the chaos of my cancer. We love the unexpected community that my disease has provided us, and the raucous laughter we always wind up sharing within these walls. We love the friends who’ve become family over the past few months. But sometimes this little clubhouse is a hard place to be. Eventually, everybody leaves it—and there are only a few ways out. The hoped-for option is by getting better.
I have a lot to talk about tonight. This morning, I had examined my shampoo bottle as I washed my hair and wondered if I would make it to the bottom of it. Lately I weigh the practicality of renewing my New Yorker subscription, and the uncertainty of making plans for summer vacation when it’s only early January. I wonder if I will finish a canister of oatmeal, or if my bottle of Tabasco will outlast my presence in this world. These are the things I think about these days, because I have Stage 4 melanoma—a condition that typically grants people like me only a miserly handful of months to live. These are the things I had contemplated today before going for my first set of scans since starting my clinical trial. The ones that will tell me if the tumors in my lung and soft tissue are shrinking, or if I’m closer to dying the painful, merciless death of late-stage cancer.
I am now three months into the trial. Tomorrow is my children’s shared birthday. Lucy will be twelve and Bea will be eight. They’re so in sync, they even came into the world on the same date, four years apart. Whatever else happens next, we will mark another milestone. We will celebrate another year.
I have my next treatment in two days. The side effects haven’t been too debilitating—the word I keep using is “tolerable.” I’m exhausted all the time, have an itchy rash, get dizzy spells, and my sense of taste is off. But I get to keep what’s left of my hair and not throw up, so who’s complaining? Especially when the tumor on my back—the tender purple lump that rests right under my bra strap—has been looking smaller since the first treatment. Dr. Wolchok says it’s very encouraging, though I’m trying not to get my hopes up. People with multiple distant metastases don’t usually get happy endings. We usually just get endings. We get doctors asking us if we’re in pain, an unspoken “yet” dangling from their lips. We get the understanding that the cancer could be dancing anywhere in our bodies, eating our organs.
Earlier today, I had guzzled down a jug of disgusting orange fluid and I’d held my breath as technicians took pictures of my insides, wondering what they would reveal about the monster within me. “Whatever happens,” I’d told Jeff when I called him afterward, “I can probably try to talk them into operating on my lung.” I wasn’t sure I believed it. The lung tumor is in a delicate place, and if my condition is worsening, my options are diminishing.
Thank God Debbie has been doing okay. She’s been on Abraxane since September, and this round of chemo seems to be going well, even if the fuzzy new Chia Pet growth of hair she’d finally grown back over the summer is gone once again. “I have one eyelash left,” she’d told me the last time I called. “It’s driving me crazy.” She doesn’t know how long her course will be this time. The doctors keep saying they have to wait and see how she’s doing, how her CA 125 numbers are.
Debbie is tired of the constant rigors of getting her parking validated at the hospital parking lot. She’s irritated with her chemo port, and she’s over this whole having poisons flowing through her body thing. She’s also scared of what happens when the chemo ends.
I’m scared too, but I feel like I could live through anything else they dole out on the fourth floor of Memorial Sloan Kettering if they can just get me to the spring. Just to see the cherry blossoms one more time. But even if my tests today tell me that the cancer has been arrested, there’s still the nagging doubt, the skepticism that comes when you’ve already had one recurrence. If I live through the next few months, what will become of me when the initial course of treatment is scheduled to end? How many reprieves will I get in this life? Tonight, I’ll settle for one. Tonight, that’s what I want to talk about with my group.
So when the unknown number appears on my iPhone right now, I am sorely tempted to ignore it. But I pick it up anyway, just in case it’s important, as I scurry guiltily out of the room toward the hall.
The voice on the other end is Dr. Wolchok’s. “I have your results,” he says. He must be calling from his own phone instead of his usual office one. Dammit. If it weren’t grave, he’d wait till my appointment this Thursday. He wouldn’t be calling me from his own phone at night.
“Hey, how’s it going?” I ask, like this is a social call and I give a damn how he’s doing this evening.
He wastes no time. “I’m calling because I have good news,” he replies. “I would have contacted you earlier, but I didn’t want to tease you until we had confirmation on everything from the lab. We got your scans, and the tumor on your back has completely receded. The one in your lung is gone.”
I leave my body for a moment as the universe abruptly lurches in an entirely new direction. “Did you say gone?” I ask. Then I add, because I want to be sure I understand what he’s saying, “Now, what does that mean, exactly?”
“Gone,” he repeats. “Your tumors are completely gone. You present no evidence of disease. So we’ll see you again on Thursday and we’ll run your blah blah blah and you’ll come back blah blah blah.”
I don’t comprehend him. His voice has become the droning horn of a grown-up in a Charlie Brown special. I’m too busy simultaneously registering shock and crying. As he continues, I sleepwalk into Jeff’s meeting room. I simply point at him and beckon him out. He follows obediently as I say, “Thank you, Doctor,” and hang up.
Jeff regards my tearstained face with apprehension. “He says it’s all gone,” I say. He looks utterly bewildered for a moment, at the blubbering woman giving him impossibly happy news. Then a smile spreads across his face. He holds up his hand for a high five that melts into a hug. “Okay,” he says, his eyes damp. “Okay, I’ll take it.” We don’t jump up and down and whoop like contestants on a game show; it’s too unreal. Instead, he goes back into his room and I quickly scoot into mine. My metastatic, eager-to-kill-me cancer is gone. In just three months. Three months and a hundred years of research and my doctor’s entire life’s work.
Everyone else is already well settled in when I return to our group. Cassandra is curled up in her usual spot on the couch like a sleepy cat. As soon as I stagger, red-faced, into the room, she shoots me a worried look, and flashes her thumb—first up, and then down—in silent question. I reply with a hasty thumbs-up as I grab my seat next to her, and she squeezes my hand reassuringly.
Tonight is the last time I will ever see Cassandra. She will be dead in a month. Her sons, who are currently downstairs screaming circles around the girls, will be the next to leave the children’s family group and go into the children’s bereavement group. Tonight, though, she and I sit hand in hand on the couch, friends who, in other circumstances, might have met and bonded over playground parties and homework hassles and passionate debates over where to get the best hot chocolate in town. Now instead fighting tooth and nail not to leave their children.
Marlena breaks the spell. “If everybody’s here, I guess we can start,” she says. “Who would like to go first tonight?”
I raise my hand. As Cassandra gives me an encouraging nod, I say, “I would.”
CHAPTER 2
Best Summer Ever
August 11, 2010
The thing that tried to take my life was as big as the eraser on a no. 2 pencil. Significantly smaller than a bullet. Less formidable looking than a drop of poison. I can’t remember the first time I noticed it, because there wasn’t much to notice. I only know that it was sometime in early summer, and that as the season slipped from the bright cool of June to the muggy stillness of August, I realized that the scab on my scalp was still there, and the fact that it wasn’t healing was getting old.
I felt it when I washed my hair, and wondered what I’d managed to do to myself this time. I’m
always discovering some new nick or bruise or scratch or gaping wound I hadn’t perceived at the time it was inflicted, usually in the course of chasing after the kids. It wasn’t causing me pain; it didn’t itch or ooze. It was such a minor nuisance, such a superficial imperfection that my hair covered anyway, that it hardly seemed worth a call to the skin doctor. But I didn’t want this stupid bump on my head indefinitely either, and figured some ointment or antibiotics never hurt anybody.
When I went to see her last week, my dermatologist hadn’t offered any pills or topical solutions, though. Instead, she’d knit her eyebrows together and meaningfully sucked in the air between her teeth. “That looks like skin cancer,” she’d said. “I’m going to need to biopsy it.”
Even then, I figured it was no big deal. I know lots of people who’ve had basal cell carcinomas removed. It’s the sort of thing people call “the good kind of cancer.” A little scrape. A little Band-Aid. A little scar. Lucky for me, mine was in a place nobody would even see. I felt something pinch the top of my head, and the doctor said she’d get back to me in a few days.
It’s 10:15 on a Wednesday morning when I get the call.
The kids are downtown in Chelsea at their summer day camp. Jeff is at his office in the West Village, writing copy. And I am working at home, draining the last of my morning coffee and plugging away on a story about a belligerent McDonald’s patron whose temper tantrum has gone viral, when the trill of the phone disrupts my train of thought.
I’ve had calls from doctors before, even a few unnerving ones that included phrases like “more tests” and “procedure.” Right away, though, this one is different. It cuts right to the chase. No chitchat or “How are you today?” Not this time.
“Hi, Mary Elizabeth. It’s Dr. Silver,” the voice says. “We got your biopsies back, and I’m sorry to tell you this, but you have malignant melanoma.”