The late writer Marjorie Williams was known for her razor-sharp profiles of Washington's political insiders. She mixed keen insight and pointed humor in her stories and columns for The Washington Post, Vanity Fair and others.
Williams died in January of liver cancer. She was 47. She'd been diagnosed at age 43, a mother of two young children, then 5 and 8. Doctors said she'd live three to six months. She defied that prognosis and she lived three and a half years.
Her husband, Timothy Noah, has compiled her profiles and essays, including some she wrote about her own disease. He discusses The Woman at the Washington Zoo: Writings on Politics, Family, and Fate.
Following are two excerpts:
The Halloween Of My Dreams
I was the one who insisted on the body glitter. Normally, you understand, I am a mother who pulls her daughter's shirt down and tucks it into her waistband every morning to keep her from showing her navel to the whole third grade. I make her scrub the supposedly water-soluble unicorn tattoos off her cheeks before she goes to school. I court her wrath by refusing to buy the kids' fashions that seem designed to clothe tiny hookers. But after all, this was Halloween, the holiday that celebrates license. (A fifth KitKat bar after 9 PM? Why not?) Alice was determined to be a rock star, and I was happy to help her. Simple enough.
Yet my joy in conspiring with her felt so big. Usually I'm not much of a Halloween enthusiast, not since I was thirteen or so. For a while, having children of my own brought me a new version of the old childhood thrill. One year Will came home from preschool and told me he'd learned about a new Halloween creature, one that lurches through the night swathed in flapping bandages.
"Oh," I said casually. "What's it called?"
"The MOMMIES!" he announced, with much more excitement than dismay.
But my delight lasted for only a few years before I returned to thinking of Halloween as just a silly, gaudy night that strains at symbolism -- the floozy among the family of big holidays. I thought, for a while, that I had simply buckled under the demands of Costume Hell. ("I want to be a computer, but also my feet will be, like, a robot, and you can make me a head with glowing red eyes and a voice like Darth Vader.") But that explanation has become less and less convincing: At eleven and almost-nine, after all, the kids have more and more fun making their own costumes, with minimal help. Really, I think that I'm just not one of those people who easily climbs into fantasy and achieves flight.
Recently, after my dear cousin Sally spent a night guarding my sleep in the hospital, we talked about the one part of the experience I remembered as clearly as she. When I'd finally taken aboard enough pain medicine to dull the effects of the procedure I'd just been through, I'd said clearly, out of my cloud of Dilaudid, "I love all these random thoughts. All my life I've worked so hard to get words and sentences into line. They had to have a point. I love floating along on all these random thoughts."
It made me hugely sad to see that my escapes from the taskmistress of literalism are still so rare and hard-won. And in the days before this Halloween, it was especially hard for me to avoid interpreting its elements too bluntly. If you have cancer, if you've had it for a while, at some point you start really seeing all those skulls and skeletons and Styrofoam headstones, all those children in hooded capes, bearing scythes on their little shoulders. So how could I explain the euphoria of the forty-five minutes Alice and I spent in her bedroom, colluding over her hair, giggling at her faux-leather, deeply fringed bell-bottoms? The pleasure of watching her strap on those awful silver platform shoes, like something I wore in 1973?
Because Alice was getting picked up to join friends for trick-or-treating, I kept my eye on the clock, and shooed her into the bathroom just in time to add make-up: grown-up lipstick, a layer of shimmery lip gloss over that, and an overall, emphatic scribble, on her neck and face, with the body-glitter crayon. Every other day of the year, any mother knows that glitter is the work of Satan, but last Sunday it lit her skin with a dew of every color.
We could hear her friends pull up to the curb. As her momentum carried her to the top of the stairs, Alice looked back and tossed me a radiant smile. She had become my glimmering girl: She looked like a rock star. She looked like a teenager. She looked absolutely stunning. She thundered down the stairs in those shoes, and as the front door slammed behind her, it came to me -- what fantasy I had finally, easily entered this Halloween.
I'd just seen Alice leave for her prom, or her first real date. I'd cheated time, flipping the calendar five or six years into the future. The character I'd played was the fifty-two-year-old mother I will probably never be. It was effortless.
--November 3, 2004
Editor's Note: A month after Marjorie wrote this, her oncologist concluded that there was no further treatment to recommend. Marjorie died, at home, on January 16, 2005, three days after her forty-seventh birthday.
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The book includes a previously unpublished piece titled, "Hit by Lightning: A Cancer Memoir." In it, Williams writes that she and her husband came to think of cancer not just as a disease but also as a locale -- they called it Cancerland. Read an excerpt:
Hit by Lightning: A Cancer Memoir
We arrived at last at the office of the preeminent gastrointestinal oncologist in Washington, DC, whom I will call Dr. Liver. We had been warned away from the hospital where he was based -- in part by former employees we'd met in other hospitals, who had said, "Whatever you do, don't go there. It's a mess." Administratively, they meant. But it turns out that you don't really have that much choice if you want to get treated in the Washington area. This ran against my assumptions, but there it was.
We sat for a while in the pleasant waiting room of the hospital's cancer clinic. Then a nurse led us to a tiny examining room. And about forty-five minutes later, in swept Dr. Liver with a retinue of two -- a nurse and a "Fellow" (as I learned later, this is a full-fledged doctor who comes to the hospital for a time to be trained in oncology). Because the room was so tiny, with only two chairs, Dr. Liver stood. He was a tall, southern presence, with fair skin and very light blond hair with a tint of red.
Dr. Liver had looked at my MRI already, and, I imagined, had made a series of binary decisions. Will she live? (Yes/no . . . No.) Will she die soon? (Yes/no . . . Yes.) Is her situation so desperate that I should convey this with all possible, brutal force? (Yes/no . . . Yes.) Should I bother to learn her name? (Yes/no . . . No.)
He began by shaking his head. "How much do you know about what's going on?" he asked. As he spoke, he leaned against the examining table and towered over us. (For the next two years, I made a point of perching on the examining table for the duration of every appointment, to match his height -- until one day I realized he had for a long time been sitting down in a chair for our meetings.)
We assured him we'd already been to five doctors: We knew how bad it was.
Dr. Liver nodded. Good: We didn't have to have The Conversation.
"So," he said, "you know your only real treatment option is chemotherapy. And even that is unlikely to do much good."
We talked about various chemotherapies I might try. He wanted to try a fairly standard combination of adriamycin and taxotere. "But we have a trial -- ," he said; words I would hear him say again and again in the future. "A trial, where we're using those drugs but testing a new regimen of the agent we give you after the chemo to keep your white count up."
"So the trial part," I said, "wouldn't actually be doing anything toward treating the cancer."
"Nope," he said.
"Can I get those drugs outside of the trial, just as a regular patient?"
"Well. Sure. But I'll get you the consent form to read over, just in case. Think about what you want to do and call us when you're ready."
His voice and body language were beginning to hint that our meeting was coming to a close. One day I would come to respect and be grateful for his frankness, and discover an unsuspected well of kindness and compassion; but for the moment he had the air of a breezy pessimist: not the easiest personality type for someone with a death sentence to enjoy.
"What," I asked, "are we shooting for here? I mean, what would you consider a success?"
"Well you know," he said, "this is mostly palliative care. If we didn't do any chemo, you'd begin to have some very unpleasant symptoms soon. So I guess we'd be hitting a single if it acted enough to make you comfortable for a while. A double would be if it actually shrank your tumors some. And a triple -- which is very unlikely -- would be if we were still standing here six months from now talking about what to do next." Apparently a home run was not an option.
Tim asked whether we couldn't consider some far-out experimental treatment -- something way back in the pipeline, which we might attain through a compassionate-use policy at some drug company yet to be identified.
"No. There's not a chance," Dr. Liver answered bluntly. "This is Washington. Everyone thinks they can be the exception. But the lists for the kind of treatment you're talking about are ten thousand long."
Finally, we had the obligatory conversation about how I could have gotten this cancer. "You've got no cirrhosis," he said wonderingly, ticking off the potential causes on his fingers. "You've got no hepatitis. It's wild that you look so healthy."
So how do you think I got it? I asked.
"Lady," he said, "you got hit by lightning."
My biggest fear was that death would snatch me right away. An oncologist at Sloan-Kettering had mentioned, parenthetically, that the tumor in my vena cava could give birth at any time to a blood clot, causing a fast death by way of pulmonary embolism. The tumor was too close to the heart for them to consider installing a filter that would prevent this. It would be "rational," he said, in answer to our questions, to make it a policy for me not to drive anywhere with the children in the car.
I knew, too, that the disease outside my liver had grown with incredible speed. Only a couple of weeks after diagnosis, I began having symptoms -- including stomach pain bad enough to hospitalize me for two days. After watching my father's five-year battle with cancer, I was aware that a cascade of side effects could begin at any time, some of them fatal.
I wasn't ready, I said to friends. Not in the way I could be ready in, oh, three or four months. Perhaps I was kidding myself in imagining that I could compose myself if only I had a little time. But I think not entirely. I had watched my parents die three years earlier, seven weeks apart -- my mother, ironically, of liver disease, and my father of an invasive cancer of unknown origin. I had a pretty good idea, I thought, of what was coming.
But from almost the first instant, my terror and grief were tinged with an odd relief. I was so lucky, I thought, that this was happening to me as late as forty-three, not in my thirties or my twenties. If I died soon there would be some things I'd regret not having done, and I would feel fathomless anguish at leaving my children so young. But I had a powerful sense that, for my own part, I had had every chance to flourish. I had a loving marriage. I'd known the sweet, rock-breaking, irreplaceable labor of parenthood, and would leave two marvelous beings in my place. I had known rapture, and adventure, and rest. I knew what it was to love my work. I had deep, hard-won friendships, and diverse, widespread friendships of less intensity. I was surrounded by love.
All this knowledge brought a certain calm. I knew, intuitively, that I would have felt more panicked, more frantic, in the years when I was still growing into my adulthood. For I had had the chance to become the person it was in me to be. Nor did I waste any time wondering why. Why me?
It was obvious that this was no more or less than a piece of horrible bad luck. Until then my life had been, in the big ways, one long run of good luck. Only a moral idiot could feel entitled, in the midst of such a life, to a complete exemption from bad fortune.
So now my death -- as a given -- dominated my relationships with all of those close to me: With my two dear, dear older sisters, to whom I was doubly bonded by the shared ordeal of helping my mother die, and with my stepmother -- a contemporary of mine, who had seen my father through his five ferocious years of survival. With my best friends -- who spoiled and cosseted and fed and sat with me, rounding up great brigades of clucking acquaintances to bring us dinners, saying just the right thing, and never turning aside my need to talk: especially my need to talk about when, not if. My friend Liz even went out to look over the local residential hospice, to help me work through my practical concerns about whether, with children so young, I was entitled to die at home.
Above all, of course, death saturated my life with my children -- Willie, then eight, and Alice, then five. I don't think death (as opposed to illness) dominated their view of me, but it certainly barged its cackling way into my heart and mind during even the simplest of family interchanges. After talking to friends and reading several books, Tim and I had decided to handle the matter openly with them: We told them that I had cancer, and what kind. We told them about chemotherapy, and how it would make me seem even sicker than I looked then. We emphasized that they couldn't catch cancer, and had nothing to do with causing it.
Beyond that, we would answer with honesty any question they asked, but wouldn't step ahead of them in forcing their knowledge of just how bad things were. When the timing of my death revealed itself, then we would have to tell them. Above all, I wanted to spare them the loss of their childhood to a constant vigilance: If they knew we would talk to them honestly, they wouldn't have to put all their energy into figuring out at every turn what new distress was agitating the air around them. Neither of them, at first, chose to ask the $64,000 question. But I couldn't lay eyes on them without seeing them swallowed by the shadow of devastation to come.
Notice, though, that I don't include my husband among those to whom my death was an imminent fact. From the moment of diagnosis, Tim rolled up his sleeves and went to work. In this way, we divided the work of assimilating our nightmare. I addressed myself to death; he held a practical insistence on life. It was the best possible thing he could have done for me, although it often separated us at the time. It could make me crazy, lying awake on the left side of the bed, wanting to talk about death, while Tim lay awake on the right side trying to figure out the next five moves he had to make to keep me alive, and then beyond that, to find the magic bullet in which I did not believe.
But I never thought of refusing treatment. For one thing, it was obvious that I owed my children any shot at reprieve, no matter how improbable. Also, my doctors said that even the slim prospect of mitigation was worth a try. And so Tim and I drifted into a tacit, provisional agreement to act as if. . . . As if, while I began chemotherapy, I were in some genuine suspense about the outcome.
Yet it made me furious any time someone tried to cheer me up by reciting the happy tale of a sister-in-law's cousin who had liver cancer but now he's eighty and he hasn't been troubled by it in forty years. I wanted to scream, DON'T YOU KNOW HOW SICK I AM? I knew, of course, how narcissistic and self-dramatizing this sounded. Still, it enraged me when anyone said, Aaanh, what do doctors know? They don't know everything. I was working so hard to accept my death: I felt abandoned, evaded, when someone insisted that I would live.
That was a deeper anger than the irritation I felt at the people -- some of them important figures in my life -- who had memorably inappropriate reactions. I can't count the times I've been asked what psychological affliction made me invite this cancer. My favorite New Yorker cartoon, now taped above my desk, shows two ducks talking in a pond. One of them is telling the other: "Maybe you should ask yourself why you're inviting all this duck hunting into your life right now."
Another woman sent me a card to "congratulate" me on my "cancer journey," and quoted Joseph Campbell to the effect that in order to achieve the life you deserved, you had to give up the life you had planned. Screw you, I thought. You give up the life you had planned.
And a former mentor insisted on explaining the entire cosmic plan: According to Teilhard de Chardin, she said, we are not human beings having a spiritual experience, we are spiritual beings having a human experience, and so now I had taken on this cancer because I had evolved to the point that I could ascend to the next level, where her Aunt Shirley was already hanging out. But I would also get to somehow swoosh down and visit my family and check out how they were doing. It was painful to hear such an admired friend explain this, with no humility or scintilla of doubt, but finally it became funny when she began sending me books on the same theme: I never got past a single glance into pages that couched the words "life" and "death" in quotation marks.
You know how common wisdom insists, in answer to the awkward feelings that always accompany sickness and death, that there's really no wrong thing to say? This is entirely false. Around the same time I started treatment, my friend Mike revealed to all his friends that he had been dealing for some years with Parkinson's Disease. We began a competition, by email, to see who could compile the most appalling reactions.
I found my best ones in hospitals, among doctors and nurses who seemed unacquainted with -- or terrified of -- fear and death; who were constantly holding up the garlic of their difference from me, to ward me off even as they pretended to minister to me. There was the nurse who hissed at me, with inexplicable ire, "You have a very bad disease, you know."
There was the nurse's aide at Georgetown University Hospital who trudged into my room one morning, heaved a great sigh, and said, "I tell you, I hate working the oncology floor. It's so depressing." Her aunt had died of cancer, she said, and, "Boy, is that an awful disease."
At least her oddball gloom was right out there on the surface. Perhaps worst of all was the nurse in the chemo infusion ward, with whom I fell into conversation to while away my seventh hour of chemotherapy on a gray day in late December. We talked idly about vacations we'd like to take some day. "Oh well," she said, putting down my chart and stretching kittenishly on her way out the door, "I have all the time in the world."
At the start of this struggle, with one shining exception, no one in a white coat ever uttered a single humble word; a single doubt; a single suggestion that surprises happen in medicine, and I might hold out a distant hope of doing better than the norm. It was as if any flickering hope I held might set fire to the floor, forcing them to stamp and stamp until they had blown it out. I see, of course, the reasons why oncology might make you a pessimist (or might attract pessimists in the first place): Ninety percent of Dr. Liver's patients die, so why would it be anything but painful for him to watch false hope lighting the eyes of a young-ish mother who had children the same ages as his own? But, until very recently, understanding didn't mitigate my anger. Is it so much to ask that a doctor, while telling the truth, might at least refrain from lashing his patients with the rage of his impotence?
The great exception among the scythe-bearers was Jerome Groopman, MD, the hematologist-oncologist-researcher who writes medical articles for the New Yorker and holds an endowed chair at Harvard Medical School. I knew of Jerry by reputation, and was lucky enough to have several mutual friends and acquaintances in journalism who put us in touch. When my husband called him and described the specifics of my case, Jerry said, "We're going to have to manufacture a miracle." He made it sound eminently possible. And while I never formally became his patient, he became our guide, sherpa, adviser-in-chief -- teaching us the secret handshakes, describing the tests we should insist on and the drugs we should ask about, shaking out of his pockets at several turning points the specialists that my other doctors thought there was no point in pursuing. He never denied the reality of my disease, but took the unusual attitude that until shown otherwise, any patient entering treatment had at least the right to hope for the best.
But while Jerry's bracing advice would revive my courage at many turns, I had bought deeply into the pessimism of the doctors treating me. We think our culture lauds the stubborn survivor, the one who says, "I will beat this cancer" and then promptly wins the Tour de France. But the truth is that there is a staggering vulnerability in asserting one's right to hope. Even most of the doctors who have, from time to time, promoted my optimism tend to wash their hands of it as soon as some procedure or potion fails to pan out. So I have carried what hope I have as a furtive prize.
This attitude was driven, too, by what I brought to the fight. I grew up in a house where there was a premium on being wised-up to impending disapproval or disappointment; and there was punishment by contempt for any blatant display of innocence or hopeful desire. It was all too easy for me to feel shamed in the blast of medicine's certainty. If I carried hope from the start, I did it in secret, hiding it like an illegitimate child of a century past. I hid it even from myself.
It is in my personality, anyway, to linger on the dark side, sniffing under every rock, determined to know the worst that may happen. Not to be caught by surprise. I was raised in a family full of lies -- a rich, entertaining, well-elaborated fivesome that flashed with competition and triangles and changing alliances. If your sister was becoming anorexic, no one mentioned it. When your father's ubiquitous assistant came along on family vacations year after year, and sat at picnics with him thigh-to-thigh, no one named the strangeness of it. That my parents divided me and my sisters up between themselves and schooled us in scorn for the other team: that was certainly never acknowledged. But it married me for life to the inconvenient argument, the longing to know what was real.
Hence, even when my prospects for recovery or remission have looked best, there has always been one face of my being that was turned toward the likelihood of death -- keeping in touch with it, convinced that denying it any entry would weaken me in ways I couldn't afford. Forced into a corner,
I'll choose truth over hope any day.
I worried, of course, that I was dooming myself. Americans are so steeped in the message that we are what we think, and that a positive attitude can banish disease. (You'd be amazed how many people need to believe that only losers die of cancer.) Was my realism going to shoot down any possibility of help? Superstitiously, I wondered.
But it turns out that hope is a more supple blessing than I had imagined. From the start, even as my brain was wrestling with death, my body enacted some innate hope that I have learned is simply a part of my being. Chemotherapy would knock me into a passive misery for days. And then -- depending on which formula I was taking at the time -- a day would come when I would wake up feeling energetic and happy and very much like a normal person. Whether the bad time I had just had lasted five days or five weeks, some inner voice eventually said -- and still says -- Never mind. Today is a ravishing day, and I will put on a short skirt and high heels and see how much of the future I can inhale.
On the morning of my first chemotherapy, Dr. Liver dictated notes that closed with this fragmentary, misspelled sentence: "It is to be hoped, . . .unlikely that we will get a second chance."
Two chemo cycles later, I had a CT scan that showed dramatic shrinkage in all my tumors -- shrinkage by as much as one half. Dr. Liver actually hugged me, and hinted that it was not impossible I might be a "complete responder." The first thing you learn when you get cancer is that the disease you've always thought of as 90 or 100 precise conditions is in fact hundreds of different diseases, which shade into each other all along the spectrum. And I turned out to have some mysterious fluke, a bit of biological filigree in the make-up of my tumors, that rendered them far better targets than I'd had any right to expect.
I went right out and bought four bottles of champagne, and invited our eight dearest friends to the house for a party. It was a beautiful September night and we all ate pizza on the front porch. The kids were thrilled by the energy of it all, without quite understanding it. (After all, I still had cancer, didn't I? And they hadn't known how firmly I had felt sealed in my coffin before now.) It was as if a door far across a dark room had opened a small crack, admitting brilliant light from a hallway: It was still a long, long shot, I knew, but now at least I had something to drive toward. A possible opening, where before there had been none.
I became a professional patient. And all my doctors learned my name.
--May 2004
From The Woman at the Washington Zoo by Marjorie Williams. Copyright 2005 PublicAffairs, a member of the Perseus Books Group. All rights reserved.
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