A few groggy hours later, I’m being pronounced well enough for discharge, and Jeff and I are in the backseat of my friend Shannon’s car, hauling ass back home. Home. Jeff opens up the black front door to the apartment we spent three years searching for. The place where our children sleep. I feel like I’ve been gone away a lifetime. It’s eerily empty without the kids, who are still safely ensconced with Jeff’s parents in White Plains. On the dining table is a lush floral arrangement from my co-workers at Salon. The card reads, “Good luck telling cancer to go fuck itself. From your family.”
Though I have what I believe is plenty of my own steam, Jeff protectively ushers me directly into the bedroom, which he has specially prepared for my convalescence. The bed is turned down on my side, and Bea’s pink bolster is propped up on it. A folding table is perched nearby for all my beverage, book, and pharmaceutical needs. “This looks so good,” I tell him as I crawl in. “Thank you.” Then I fall asleep so quickly and so deeply I don’t remember anything else for a long time.
I am napping my way through the afternoon when Jeff’s mom returns the kids, but I groggily rouse when I hear the dainty rumble of their feet excitedly pounding their way through the bedroom door. I slowly hoist myself up. My head is still wrapped in bandages and topped with a jaunty mesh cap, knotted at the top. I look like a cross between Little Edie and a Keebler elf.
“You need to be very gentle with Mommy,” says Jeff, and they slow down right in mid-pounce, their faces going from giddy to solemn as they take in the sight of their bandaged, messy mom. Fortunately, all my procedures are on the left part of my body. “Just don’t get on my bad side,” I reply, beckoning them toward me for a modified hug. Then I command, “Come with me,” and drag myself out of bed and march into their bedroom.
I dig out the girls’ overstuffed bin of assorted magic markers in various states of inky viability and their dress-up shopping bag of ribbons and pieces of lace, and dump the lot on the dining table next to my pile of fresh mesh caps.
“The nurses said I need you to decorate them,” I say.
“That’s so fun,” Bea says, her eyes lighting up at the prospect of a project. “This is the funnest thing that happened since you got cancer. You’ve got to be okay if we can do this.” Then she adds, more gravely, “I guess this is a big deal, right?” Yeah, I’m still processing that one myself.
We spread our notions out and set to bedazzling my headgear. We thread delicate ribbons through the mesh weave. We draw flowers and butterflies. Bea festoons a cap with bright green lace, and Lucy monograms my name in script. We thread and knot and tie cute bows. Combined with the hot pink Lilly Pulitzer beach cover-up I’m rocking, the eccentric invalid motif is now complete. I put on one of my caps.
“What do you think?” I ask.
“You don’t look sick, Mommy,” Bea says approvingly. “You just look crazy.”
That night, nauseatingly drugged out on Percocet and exhausted, I turn in early while Jeff stays up watching Billy Madison for the umpteenth time. It’s not even 11 p.m. when I rouse from a deep sleep and stumble to the bathroom for a pee run. I drowsily wash my hands, and then absently sweep my hair off my shoulders. As I do so, I touch my neck. My knees are buckling underneath me.
It isn’t even a thought yet. I’ve just felt the place they biopsied my lymph nodes, and it’s swollen either from the procedure or something far more serious. Is that a tumor? Is that what one feels like? It doesn’t matter right now anyway, because the room is going black around me. I’m hyperventilating now, lurching toward a perch on the edge of the toilet while I feebly call out for help. “Jeff?” I moan. “Something’s wrong.”
Through the fog, I feel his cool hand guide me toward the bed, where I crash like I’ve been dropped from a great height. I hear his voice, muffled, speaking from far away. “Just breathe with me, okay?” he says. “One, two, three, inhale. Four, five, six, exhale. Good girl.”
So this is an anxiety attack. This is what it’s like when the darkest part of your brain takes your body hostage.
“You’re doing fine,” Jeff coos soothingly as I frantically continue to attempt to remember how to breathe. I hear his footsteps tread out of the room and soon after approach again. I feel a washcloth on my brow. If the cancer doesn’t kill me, the hysteria may do it first.
CHAPTER 5
Don’t Call Me a Survivor
September 2010
I’m sure that every minute you’re waiting for the lab results from your cancer surgery always feels interminable, but no joke, the wait at Sloan Kettering today is ridiculous.
For my first postsurgery doctor’s appointment, I am today wearing the bright green FUCK CANCER shirt that Debbie gave me with a flowing peasant skirt, an item chosen because it seemed the least likely thing in my wardrobe to rub up against the bandaged, playing card–size patch on my thigh where my skin used to be. My head is still swaddled in bandages and my little mesh elf cap. I feel impossibly fragile, like I’m balancing a newborn on my head. As I shift uncomfortably in my chair, I am keenly aware of the steady throbs of pain coming from several regions of my body that my first big outing since surgery has set off. Not so mighty now, are you, Percocet?
I leaf unconvincingly through a copy of People, trying not to notice the wig brochures fanned out on the coffee table, as Jeff makes light, jokey chitchat. I am increasingly panicky and headachy and sore and sweating like a beast. Now I know why they call it “clinical strength” deodorant. It’s because it’s what you need when you’re waiting for your clinic results.
Finally, someone calls my name. “Mary Williams?”
“Mary Elizabeth,” I say dully. I get up and wave meekly to Jeff as I trudge off to change into seersucker.
This morning, as I left for Sloan Kettering, Bea had thrown her arms around me and said, “Don’t worry, Mom, the worst is over.” Now I try to read Dr. Partridge’s expression when she walks in the door, to determine if Bea was correct. But Dr. Partridge has the poker face down pat. So I state again what I told her on our first meeting. “Please don’t tell me what stage I am. Just tell me how we’re going to treat it from here.”
“Then I suppose you don’t want to know that the cancer wasn’t in your lymph nodes?” she asks, with obvious pleasure.
“I guess you can tell me that,” I tell her.
“Your margins were clean, too. It doesn’t look like there’s any spreading,” she continues. “We don’t recommend chemo for you, based on how the surgery went and because we find chemo isn’t very successful as an initial course for melanoma anyway. I’d be very skeptical of anyone who tells you otherwise.”
There is currently only one FDA-approved single-agent chemo drug for melanoma, dacarbazine. It has at best a 20 percent response rate in patients with late-stage melanoma—and as low as a 5 percent one. Even in people it works on, the duration of its effectiveness is often short-lived, usually only six months or fewer. Yet in 2010, it still remains the standard protocol for most patients with advanced melanoma. It’s also been associated with the development of secondary malignancies. Temodar, an oral chemo drug used for brain tumors, has also been used for metastatic melanoma patients, and with similarly discouraging overall results. As one of my nurses will later recall, “When I came to melanoma, patients were getting Temodar like Tic Tacs—and it really wasn’t doing much prolonging their lives.”
“You do have the option of interferon,” she says, “if you feel that you want additional treatment, but we don’t suggest it and don’t offer it. The data don’t support its effectiveness, and the side effects are awful. You’d feel like you had the flu for about a year, and it might not do any good at all. If you want to pursue it, we’d help you transfer to another care facility.”
Interferons are proteins that can be used therapeutically to trigger immune system responses. The treatment has had some, but very limited, effectiveness in treating melanoma. And though Dr. Partridge doesn’t mention it, interferon can also often induce or wo
rsen depression, sometimes severely, in many patients.
“Okay,” I say. “I’ll think about it and let you know.”
“Great,” she says. “In the meantime, I’m going to make an appointment for you with our immunology team to discuss any possible adjuvant therapy they might recommend for you, and you’ll come back in October for an MRI and CT scan. For now, you’re cancer free. You know,” she adds, “this is a terrific time in melanoma research.”
I’m apparently cancer free and picked the right time to get melanoma, but my cancer was definitely not messing around. My medical report confirms that I had what has been classified as a T4b scalp melanoma with ulceration and a Clark level of 5—which means it was bigger than four millimeters in thickness, that the epidermis covering the melanoma was not intact, and that the melanoma had invaded into the subcutaneous tissue. The long-term prognosis for melanoma patients with ulceration is typically worse than those without. My cancer was, as Bea would say, a big deal. On the upside, I had a negative sentinel lymph node, and the hope is they got that big old ulcerated cancer out, and I can move on.
“So at what point,” I ask her, “do you think I get to call myself a cancer survivor?”
She gives me an indulgent look and answers truthfully. “When you die of something else. Now,” she adds as she gingerly begins to cut away at the bandages, “let’s take a look at how we’re doing.” The sound of metal slicing through fabric, through the protective layer of stitching sewn to my skin, is close in my ear. The nurse dabs at my head, and then I feel a shocking trickle of cool fluid flow down to my ears. My first thought is that she’s popped something disgusting, but it’s just a saline solution to clean my wound. A discarded patch is tossed onto a silver tray. It is deep crimson, ringed with spiky black threads that look like the hairs on a spider’s legs.
“Okaaaaay,” Dr. Partridge singsongs, like you do to a child when you’re about to tell her the cat died, “I can see by the pus that we’ve got an infection here.” If I can’t clear up this infection, the implication is clear—another graft surgery. Another mining of my flesh. “I’m going to give you a prescription for an oral antibiotic and some Silvadene cream,” she continues. “You’re going to need to clean it twice a day. If you can use saline solution, that’d be best.” Before surgery, I hadn’t really considered the management of my gross healing process or what that would entail. Now I understand that it’s just another part of my new job in my new town. I watch Dr. Partridge intently cleaning and realize that Jeff’s just been recruited too.
My nurse Nina has been standing by patiently during this whole exchange, looking at me like I’m a safe she’d like to crack open. As soon as Dr. Partridge gives her the signal, she swoops in. “We need to clean up along the edges,” she says. She purses her lips as she surveys the area, and only once she’s got the lay of the land does she begin to excavate it with an intimidating, tweezerlike tool. “Is that a suture?” she asks, plucking a waxy length of thick black thread out of my head and holding it up for me to inspect. Christ, I hope that’s a suture. Pick, pick, pick. Dig, dig, dig. I sit stock-still as she removes packed-on ointment and God knows what else, and then proudly displays the results to me. “See that?” she says, showing off a tiny tray full of accumulated dried skin and blood. “You need to get that.” Between the sight of my surgical detritus and the opioids I’m on, I feel like barfing.
Then a flash of inspiration hits Nina. She flies out of the room, and when she returns, she is carrying a fistful of plastic wands the length of chopsticks, each topped with what resembles a mascara brush. “Let’s give this a try,” she says, and she tenderly flicks more flakes off my head. She seems pleased with her ingenuity—and I’m absurdly grateful for a less crusty head. “You don’t want to know what we really use these for,” she says as she pops the bunch in a plastic bag marked BIOHAZARD and hands it to me. Let’s see … they’re long and slender … oh.
My margins are clean. My lymph nodes are clear. My doctor says I am cancer free. I don’t need any further treatment. And just to recap, I have spent the morning having my wide-open head worked over with a cervical sampler brush.
“And how are your bowels?” Dr. Partridge asks as Nina reswaddles my melon in cream and gauze. “Is the Percocet making you constipated?”
“Outrageously,” I answer truthfully. This woman has sawed open my head. I can’t imagine there’s any mystery left. “The stool softeners aren’t cutting it.”
“Move on to something stronger, then,” she says, ordering me to up my laxative game, and with that imperative, I am free to leave. There is still work to be done. More doctor visits and consults and the fear of what they might reveal. My head hurts and my wounds are nowhere near healed. But there’s today. There’s me getting to tell my kids I don’t have cancer anymore. Today is tremendous.
Later in the afternoon, when Jeff is getting ready to go get the groceries for dinner, he asks, “Do you need me to pick up anything for you while I’m out?” I decide that this is a good moment for the private concerns the doctor raised to now be shared.
“As a matter of fact, yes. I need something to help me, you know …” I say as my voice trails off meaningfully, “go.”
“Gotcha,” he replies with an exaggerated wink, and dashes off like he’s a constipation-fighting superhero. When he returns a half hour later, he is beaming—and proudly carrying a full case of Fleet enemas.
“Oh sweet Lord in heaven,” I say. “What have you done? How are we ever going to show our faces in the Rite Aid again?” I gaze in horror at the economy-size collection of anal paraphernalia. “They’re going to think you run a fetish club now.”
“You said you needed something,” he shrugs. “They didn’t have any individual boxes.”
“I meant something in a pink box with the words ‘gentle’ and ‘overnight’ on the label, not a lifetime supply of colon hoses,” I reply. He looks crestfallen. I’d given him an important mission and now I’m being ungrateful. “I’m sorry,” I say. “Thank you for the case of enemas.”
“You’re quite welcome, my special lady,” he replies. Ever the gentleman.
That evening, I flip the toilet lid down and take a seat as Jeff washes his hands and snaps on a pair of surgical gloves for his first go at cleaning the wound site. “Now, how should I do this?” he asks.
“Dr. Partridge said we should try to get something with saline,” I reply. “I should have asked when you went to the drug store.” Then the lightbulb goes off above what’s left of my head. “Something in a squirt bottle,” I continue. “That’d be convenient.” I get up, go to the closet, and pull out a Fleet bottle. “Here you go, pal,” I say as I hand it to him. “I think you may just be a genius.”
I sit back down and he slowly pulls away the gauze padding. It’s all very Bride of Frankenstein. I feel there ought to be lightning and lots of bzzt bzzt sounds and Jeff shouting, “She’s alive! ALIVE!” Instead, once all the bandages are off, he just quietly says, “That is intense.” And he doesn’t say anything else.
I get up, wordless as well. I take the hand mirror from the basket by the sink and stand in front of the medicine cabinet mirror—and do nothing. What kind of wuss are you? I think. Scared of your own body. Just look at it. Look at it. Then I bend my chin into my chest and hold up the smaller mirror behind my head so I can view, for the first time, the empty place where my hair used to be. My disaster area.
Then I gag, my breakfast bolting toward my throat. Okay, that was some serious Ray Liotta in Hannibal fare. Some Lucy Liu in Kill Bill action. What the hell happened to the top of my head? It’s gone. I steady the mirror in my hand, and look again.
I know, intellectually, that this isn’t my brain I’m looking at, but I’d been expecting a lot more in the way of skin up there. Below the waist, it sure looks and feels like they took plenty off my thigh. Yet up on top there’s a delicate, near invisible webbing growing over blood and muscle and goo surrounding my skull and, oh my God, I might fa
int. I can see straight down into everything normally protected by scalp and hair. Jeff was right. That’s intense.
Ever since the surgery, I’d been trying to avoid grieving for the patch of my head that’s never coming back. I had thought I’d easily slip into the role of positive, cheery cancer “survivor.” Instead, here it all comes now, all the darkness, flooding in all at once. It’s different from the fear of cancer, or the pain of healing, although those things are still very much kicking up a storm in my psyche too. This is something else—it’s straight-up loss. Of course I’m grateful the melanoma is gone, but part of my body is part of my past now, and it’s odd how viscerally it affects me. I sit down on the edge of the tub, gulping air and sobbing.
I look up at Jeff. He looks both defeated and terribly tender. This is a new kind of intimacy between us—and a new kind of distance too. I’m the one who got cancer. He’s the one who has to pick up the pieces. He’s the one who took the kids back-to-school shopping, the one making dinner and doing the dishes, every day, and running out for enemas. I got abducted to Cancer Town, but he has chosen to come with me into it. “You ready?” he says, and continues his new job as the person in charge of my bloody, pus-filled surgical wounds. I nod, and he spackles thick white cream on my wide-open head, more delicate than an infant’s fontanel, with a tongue depressor.
“I’m sorry,” I say. “This sucks for you. This isn’t what you signed up for when we got together.”
“True,” he replies. “I just wanted your roast chicken again. Still, you’re not getting rid of me that easily this time.” He puts his hand on my shoulder. “When you got diagnosed,” he says, “I thought, this is bad. But your doctor says you’re cancer free, and you don’t have to have any chemo. It’s gone even better than we could have hoped. What’s a little spackling? Now tell me how this feels.” I sense cool cream sliding over the place my scalp used to be, and the touch of someone very sweet. “It feels good,” I say. It does.
A Series of Catastrophes and Miracles Page 5