A Series of Catastrophes and Miracles
Page 2
This is how the bottom drops out of your world, in ten seconds. It’s the sound of your doctor telling you, “I’m sorry.”
To her credit, she truly does sound sorry. My pretty dermatologist, the lady with the twins in kindergarten and the cute shoes, feels a pity for me I don’t yet even comprehend. “I’ve made an appointment for you with my colleague. You’re going to go to Sloan Kettering tomorrow,” she continues. It’s 10:16.
That’s when the first sickening wave of reality hits. Sloan Kettering. The cancer place. She wants me there tomorrow. Dr. Silver is speaking much too quickly now, and my hands are groping for pen and paper and my brain is flailing to grasp her words. “Because of the size and the depth of the melanoma, they’re likely going to have to be aggressive in treating it. The doctor will probably talk to you about surgery and some form of adjuvant treatment like chemo or radiation. You may also need some further therapy for your immune system. They’ll be able to discuss your treatment course once they determine how much it’s spread.” How much it’s spread.
“It’s a lot of information, and I’m sure you have a lot of questions,” she says. I do. How am I going to finish writing my story? What am I going to tell my children? What do you mean, malignant? I’m frantically scribbling notes as she speaks, grabbing on to one word in fifty. Aggressive. Adjuvant. Lymph nodes. Immune. I don’t understand. So instead, I just dully say, “Thank you. I guess we’ll be speaking again soon.”
My desk looks the same. My nearly finished story is still on the computer screen in front of me. And I have cancer.
Thomas, my editor at Salon, is expecting a story filed in ten minutes. Thomas doesn’t know. Nobody who isn’t a doctor knows. I have a secret, I think. Five days ago, I wrote a feature in Salon about Christopher Hitchens and his cancer diagnosis. Five days from now, The Big C, Showtime’s heavily promoted new series about a kooky, fair-skinned mom with life-threatening melanoma, is premiering, and I’d been planning on writing about that. My timing is hilarious. “I’m running late,” I tell him in IM.
A clipped reply boings back, “How late?” I can feel the flash of impatience from the other side of the screen.
I look at his words but I don’t reply right away, because I don’t want to say it. When I say it, it will be real and everything will be different. Except it already is real. It already has happened.
“Dude,” I reply. “I have cancer.”
“Oh God,” he writes back, “I’m so sorry.” Because he doesn’t know what else to do, he adds, “Take your time.” And because I don’t know what else to do either, I get back to work and file my story.
Thank God for the raw, motivating power of shock. It’s what gets us out of burning buildings. It’s what guides us calmly to the emergency room when the hospital calls to say a loved one has just been brought in. It’s what finishes stories when we’re on deadline.
Next, I write an email to my editors. It reads, “Just learned I have malignant cancer. Taking rest of day off. Going to Sloan Kettering tomorrow and back online Friday.” I hit send. Then, and only then, do I put my head in my hands and cry.
When I’ve composed myself enough to speak, I call Jeff at his job. Jeff and I—well, it’s complicated. We met and married in our 20s. In the ensuing two decades, we lived in three cities and seven apartments and had two kids and more jobs than I can count, and then, like a lot of other couples in this world, we broke up. We separated more than two years ago. And until just a few minutes ago, I’d have said that our marital crisis was the hardest thing that I’d ever gone through.
But even in the worst moments of our estrangement—and the breakup of a long marriage is no picnic—we held ourselves to two strict rules: We would always put our daughters Lucy and Bea first, and we would always try to treat each other with respect. To that end, we showed up together for every school play, every teacher conference, and every birthday party. We even rented an apartment right downstairs from our co-op, so the girls would never be far from both parents. If we’d never had the kids, we would have evaporated from each other’s lives. Instead, with all that togetherness, I suppose it was inevitable we’d fall for each other eventually.
Our new relationship ignited as slowly as the marriage had died, and in much the same manner. Old feelings subsided, and in time found themselves replaced with different ones. That’s life for you. Things change, and then they keep right on changing. After the initial pain of the breakup diminished, we’d formed a deep and satisfying friendship. Then one day a few months ago he’d cracked a joke, and I’d laughed, and he’d said, with a sexy new confidence, “In case you hadn’t noticed, I’m flirting with you.” It felt good to be flirted with. It felt good to flirt back. We’d gone on a date—one that had led to more. The past spring and summer had been a monumental leap of faith for both of us, and a damn fun one at that. I had always hoped that after my marriage ended, I’d someday be able to give my heart away again. Sure enough, this had been the year I had fallen in love. It just happened to be with the father of my children.
We both still find ourselves at a loss when friends ask if we’re “back together.” The phrase implies retreat, whereas we have been happily regarding this as a very different chapter. It’s not the starry romance that happens when you’re young; and unlike last time, it hasn’t hinged upon guarantees. We now both understand that life can’t always pan out exactly as you’d imagined. “Let’s just take it one day at a time,” he’d said recently, a notion I’d found, at this stage in life, far more solid and real than the naively ironclad vows we’d so confidently exchanged so long ago. Now I have to tell this poor bastard that the woman he chose—twice—is massively, medically defective. You want to take it one day at a time? Well, let’s see how you take this day, buddy. Because it’s a whopper.
“Hey, honey, what’s up?” he asks cheerfully, surprised by my late–mid-morning interruption.
“I just got off the phone with Dr. Silver,” I blurt back in a breathless stream, “and I have melanoma and it sounds like it’s bad and I have to go to Sloan Kettering tomorrow.”
He doesn’t answer at once. My words tumbled out so quickly they need some time, like the light from a distant star, to reach him. “Okay,” he says finally, slowly. “I did not expect this. I did not expect you to say you have malignant cancer.”
“Neither did I,” I say.
“Obviously, I’m going with you tomorrow,” he quickly adds. “We’ll get more information and we’ll find out what we need to do and then we’ll do it. You know, my uncle Jim had melanoma or skin cancer, one of those, and it wasn’t so bad.”
“Right,” I say. “Right. And if it is bad, I’ll probably have great access to wigs and weed, so that’s a plus.”
I wish I wasn’t alone in this apartment right now, so I wouldn’t have to freak out all by myself. I’m glad I’m alone, so I can freak out in uninterrupted solitude. Imagine if I’d been in an office cubicle or waiting for the Bx20 bus to Marble Hill when I got this life-changing news.
“Is there anything you need?” he asks.
“Just to hear it’ll be okay,” I answer.
This time, there’s only the slightest pause. It’s the sort of change in the rhythm of speech that only two people who’ve known each other for ages can even perceive, that microbeat before speaking. “Of course it will,” he says, and I want so badly to believe he’s telling the truth.
Throughout the summer, as my scab refused to diminish on its own, I’d typed my way through my share of meaningless search terms, never once getting near an inkling of what was really going on in my body. “Infected cut.” “Bug bite.” “Hair dye allergic reaction.” Nothing of any use, nothing that prepared me. So now let’s try a new one: “Malignant melanoma scalp.”
Oh, dear. Dr. Google is definitely not your friend. Melanoma is one of the most diagnosed forms of cancer among younger people, and over the past 30 years, its incidence rate has been skyrocketing. But it doesn’t always have to be a big life
-or-death deal. Even though it unsurprisingly accounts for “the large majority of skin cancer deaths,” the American Society of Clinical Oncology notes that its overall five-year survival rate is 91 percent. Unfortunately, it turns out my kind is different. As I search, up pops a New York Times story and a quote: “Research finds that having a first invasive melanoma on the scalp or neck leads to twice the risk of dying in five to ten years as having it on the extremities, trunk, face, or ears.” An April 2008 report out of the University of North Carolina warns, “Scalp/neck location is associated with poorer melanoma survival.”
That’s inspiration enough to then detour right toward the most messed-up path I can think of: my diagnosis combined with the phrase “survival rate.” Melanoma is usually very responsive to treatment when caught early. But right now in 2010, when it’s diagnosed later, the phrase “less than 10 percent” comes up in a heartbeat next to “ten-year survival.” I guess this isn’t the good kind of cancer.
My daughters are only ten and six years old. For the first of what will be a thousand times, a thought occurs to me: If I died now, for the rest of their lives, people would ask them, how old were you when you lost your mom? How much of her do you remember? They would feel sorry for them, the two sisters without a mother. I look down at my hands, and realize they’re shaking. I push my chair away from my desk and walk into the bedroom, where I sit down on the edge of the bed and stare blankly at the apartment buildings across our narrow uptown Manhattan street. This beautiful day. This perfect morning. This catastrophe.
I stay frozen on the bed for I don’t know how long, until I decide at last that I need to get the hell out of the apartment. I put on my big, cheap, Jackie O–size sunglasses from Target, slather on a thick layer of sunscreen as if my life depended on it, and head out the door, blindly moving forward. As I walk toward the A train, I feel the heat of the August sun on my head and instinctively reach my hand to my hair. It’s warm to the touch, igniting the cancer cells in my skin beneath it, no doubt. I feel defenseless and exposed.
It’s not as if my vampire-grade, chalk white complexion has escaped my attention until now. I am in every way a textbook candidate for melanoma. Incredibly pale and freckly? Check. Had one blistering sunburn—or more—before age 18? Check. What about that bonus childhood head injury on the Log Flume at Six Flags Great Adventure, the one that left me with the tiniest patch of scarred, hairless skin right at the crown of my head? Just big enough for the sun to do its work. Yet I’ve lingered in the shade my whole life, a barrier of SPF 35 and a touch of Jergens Natural Glow perpetually standing between the world and me. It just never once, in all my years, crossed my mind how much I needed to protect my head. I thought that was what the hair was for. Oh lordy, Nicole Kidman was right. We gingers should always be wearing a hat.
It’s a straight shot on the train from our neighborhood at the tip of Manhattan to Columbus Circle, and from there I walk directly toward Lincoln Center. Just last week I took the girls for Chinese food at Ollie’s, right up the street, and afterward we ate ice cream from the Mister Softee truck. It was sublime. On Saturday, I had been swinging 25 feet above the ground in a trapeze class on Governors Island. Yesterday, my Facebook status was “Best summer ever.” Now, abruptly, it’s become the worst. It’s become, maybe, the last.
Then I think, No. Not yet. As I approach the fountain, I fish a piece of change out of my purse. The copper glints in the afternoon sun as I hold it tightly for the length of time it takes to make a wish, and then fling it toward the water, where it lands with a small splash. I put on my sunglasses and walk away, back toward the subway, with tears streaming down my face.
Later, I am stumbling through the motions of making dinner when Jeff walks in with the girls, worn out from their respective days at work and camp. “Mommmeeeeeeee!” the kids squeal. I throw my arms around them like I haven’t seen them in a year, inhaling deeply the smell of their skin and the sunshine in their hair.
“How are you doing?” Jeff asks. I look up at him, and my red-rimmed eyes are answer enough. We whisper briefly in the kitchen on the topics of hospital appointments, subway logistics, and paralyzing fear as I drain spaghetti.
Over plates of pasta, I try to tell the girls. But the thing about children is that they tend to not sit primly around the dinner table, waiting for grown-ups to tell them about their cancer. Mine have spent the day at Rye Playland, so they’re especially cranked up with tales of nausea-courting thrill rides and funnel cake abuse. Lucy and Bea are racing to tell me about who forgot her lunch box on the bus and who screamed loudest on the Ferris wheel, clamoring for more garlic bread and another glass of milk. I can barely get a word in edgewise, and anyway, I have nothing planned for when I do. No inspirational, Churchill-like speech about how we shall fight this on the beaches and the landing grounds. Instead, I just look at their happy, exhausted faces one last time before their lives are going to change in ways I can’t even fathom, this final moment before we become Cancer Family. Remember this, I think. Remember what it felt like before it all changed. Then I say, “I have something to tell you about my day too.
“I got a call from the doctor,” I continue, “and you know that little bump I had looked at last week? Well, we found out that it’s cancer. So Mama is going to meet a new doctor tomorrow, and she’s going to have an operation, and she might have to have some treatment that could make her seem sick. You know, like Grandpa.” Then I exhale.
They don’t really know what cancer is. They know that Grandpa had an operation last year and that they went to visit him in the hospital. They know that the gift shop was very pretty. They know that he did something called chemo and that he was okay for a few months but now he has to do chemo again and get a weird button stuck under his skin, near the collarbone. They don’t have a lifetime of dread associated with the word.
Bea—sweet, cheerful, sunny Bea—looks over at her big sister to gauge how she should react. And it’s not from my words but the look on Lucy’s face that she realizes it’s serious. She widens her eyes dramatically. “Oh no!” she says. “You have to have yucky medicine?”
I smile. “Maybe.”
“Because you have cancer,” she continues. “Even if you don’t look sick.” Then another thought occurs to her. “So are you going to get better or are you going to die?” she asks curiously. Six-year-olds—not famed for their subtlety.
That’s where Lucy, my wise, sardonic big girl of few words, steps in. “She’s going to get better,” she declares. “Right?”
I look across the table and straight into her somber brown eyes. She’s a clever, funny girl, but her default mode is reserved and serious. Somewhere around age six, her wardrobe turned black, making her the first Goth in her kindergarten class. Fortunately for her future chances for melanoma, she hates sunlight, preferring rain, clouds, and cold. Someday, she and some windswept moors are going to be very happy together. I reply to her, as honestly as I can. “I’m going to try,” I say. “Really hard.”
That night I have a dream. In it, it happens very quickly. We’re in the kitchen—actually, it’s a subconscious version of my kitchen, far bigger and cleaner than the real thing—when a woman who looks unmistakably like Gertrude Stein creeps into the room. She is holding a knife. “I’m going to kill you,” she says, “and you can’t stop me.” I open my mouth in horror and no sound comes out. She is amused. “Look at you,” she laughs. “You can’t even scream.” I open my mouth again, and still cannot make a sound. You have to scream, I think, you have to get help. Just do it. Scream. My knees give out from under me. I watch my children’s faces go from surprise to concern to horror. As I tumble to the ground, I realize with a silent, certain helplessness, that I’m dead. But when I wake myself and the rest of the house up, I am screaming.
INTERLUDE
Cancer for Beginners
The body is a brilliant machine, designed to be strong and resilient. It heals from wounds and fends off sickness. It provides us with T cells, whic
h patrol the body to recognize and destroy abnormalities and invaders. Most of the time, the system self-regulates without us even being aware of the work it’s doing. But sometimes, the system glitches.
As Dr. Jedd Wolchok, chief of Memorial Sloan Kettering’s Melanoma and Immunotherapeutics Service and the guy who eventually saved my life, explains it: “The idea is that there are several phases in immune surveillance. The first is elimination. Tumor arises. Immune system sees it. It’s gotten rid of. End of story. The next phase is equilibrium, where a tumor arises, the immune system sees it, can’t quite get rid of it, but the cancer doesn’t do any more; it doesn’t spread. Then there’s the final E—escape. Escape is what we deal with, unfortunately, on a day-to-day basis. The tumor has learned skills that allow it to evade the immune system.”
Cancerous cells, clever devils that they are, contain an inhibitory signal that scrambles that immune system response. That’s what allows cancer to survive and the reason that cancer cells spread—the T cells that are supposed to destroy them don’t know to kill them.
Once the immune system has been overridden, it’s traditionally been the job of conventional—and invasive—protocols to do that work of fighting cancer instead. And once you’ve experienced cancer firsthand, it’s generally been understood that you will live forever with the awareness that it’s always lurking around the fringes of your future, waiting to pop up on the next set of scans. There’s always been another shoe that could drop, another chance the signal could get scrambled again.
For generations, treatment barely progressed beyond surgery, radiation, and chemo—the holy trinity known as slash, burn, and poison. For many patients, these treatments are highly effective. But because cancer invades on a cellular level, it can be an extraordinary challenge to remove it definitively—and blasting away cancer frequently comes at the expense of the healthy parts of the body too. Surgery cuts around wide margins of the cancer’s surrounding terrain. Chemo kills dividing normal cells as well as cancerous ones.