There’s lots of checking my vitals and peeing in cups before we can officially get the party started. Naomi comes in with a large tray of tubes. She puts a needle in my arm and takes blood, and then she keeps on taking. “I’ve never drawn this much out of one person at a single time,” she says, and I feel like an overachiever. She will do two smaller though also damn impressive additional blood draws before the day ends for a grand total of 36 vials. USA! USA!
It’s lunchtime before my drug cocktail comes back from the pharmacy and they even start the first infusion. I have a blood pressure cuff on my arm and an IV line in the other when Naomi rolls in with a bag that says “High Alert.” She and Christie crosscheck the name on my bracelet against the name on a form and recite the protocol number, and then at last I feel a rush of saline entering my body and a telltale metallic taste in my mouth, the opening act for the drugs themselves. It’s cool, and startling, like an ice-cream headache in my veins. Get in there and do your thing, drugs, I think. My T cells are ready to greet you and to go on an internal killing spree.
The rest of the day involves a lot of mechanical beeping and getting tangled in a mess of cords while the blood pressure cuff periodically inflates. On this first day, I will be at Sloan Kettering for 12 hours, comfortable and scared and bored and very, very drained. Finally, as I leave in the evening, I pass by Frank’s suite as he’s wrapping up too. “See you next time, Mr. Bond,” I say.
“Until we meet again, FC,” he answers.
I will come back again and again this week, getting monitored and tested. Every time, the journey to and from Memorial will seem longer and more tiring. The side effects are kicking in quickly. This wouldn’t be so bad, I had assumed. I have a strong constitution. I am in good shape. I will be one of those people who sails through this sort of thing. Then again, I tend to be wrong about a lot of things, especially when it comes to my cancer.
This morning I found myself absently scratching my forearm in the shower and discovered that overnight, a richly hued red rash had bloomed there. I was further surprised to note the places along my legs and arms where I’d clawed off my itchy flesh in my sleep. It’s okay, I had thought, I can just dab it with the A+D ointment I’ve been stockpiling since the scalp surgery until I can get something stronger from the doctor. The funny taste in my mouth—a puckery, tannic sensation usually associated with strong tea or not great red wine—that’s different. The breathlessness during my morning run—that strained, exerted feeling that doesn’t usually start until several miles in or when I’m conquering a steep incline—that was new. It had been with me from almost the first moment my sneakered feet hit the pavement. It had dogged me like a hankie full of chloroform all during my train rides to and from 53rd and 3rd, as I sat listless and groggy on the A. Now, walking up Isham Street with Lucy and Bea this afternoon, I am suddenly all too aware of why they call this neighborhood Inwood Hill.
I haven’t been this tired since my pregnancies. My pregnancies. So long ago now. Eight years since the last. I’m in my mid-40s now. I not only don’t want any more babies, I know damn well my body most likely cannot make any more babies. But when, as I’d filled out all those release forms for the trial, my creepy Charles Addams cartoon nurse had asked, “You have your family, right? You’re done having children?” and then added much more firmly, “You cannot get pregnant,” something inside of me died a little. My “don’t want to” became a “not allowed to.” My most abstract, fuzzy-wuzzy concepts are now vividly real. I am never going to have another baby. I am going to die someday. Possibly soon. Really.
On the upside, I got through the first treatment and it didn’t kill me. Only two more years to go—if I’m lucky. As a bonus, Dr. Wolchok called me yesterday to say he’s had a conversation with Dr. Partridge, and that I am approved for the back tumor surgery if I should choose to do it. It won’t affect my participation in the trial. I know she’d said it wouldn’t change things much regarding my overall condition, so for now I’m going to wait and see. But I like feeling in the driver’s seat of my own care, like knowing that Dr. Fields is not the boss of me.
The girls and I are now lurching past the playground when I spy Jolie with her kids. “You’re not wearing your hat,” she says. “I almost didn’t recognize you.” I haven’t seen Jolie in months. It’s been an eventful time.
“My hats were sacrificed in the big nit smothering of 2011,” I say. “I haven’t had any time to get out and get any new ones, because Sloan Kettering’s been keeping me busy.”
“I heard,” she says gently. I always feel at ease around Jolie. Her experience as a nurse makes her unsqueamish around festering head wounds and hair vermin. Her empathy as a friend makes her priceless.
As our respective broods scamper off together, she asks, “So are you guys doing anything? As a family?”
I’m not sure if she’s talking about the lice or the rediagnosis. I look at her blankly.
“I just know that when Andy and I were going through the D-I-V-O-R-C-E, it helped to have some extra emotional support.”
“The girls are doing great,” I reply. “They’re so strong and so together.” I think back to how Bea managed to be a comfort to me, even when she was bagging up her stuffed animals.
“I can tell,” she replies, looking over at our children, frolicking carelessly. “But sometimes it’s nice for kids to have somewhere they don’t have to be great. Sometimes it’s nice for everybody.” She gives me a look that’s both eminently kind and fiercely penetrating. “There’s a place downtown,” she continues. “A lot of my patients go there. Have you heard of Gilda’s Club?”
“Maybe,” I say. “It’s for women with ovarian cancer, right?”
“Not just them,” she answers. “Anybody affected by cancer. Patients. Families. It’s helped a lot of patients I know.”
“Thanks,” I tell her. “I’ll think about it.” But as soon as we get home, I am Googling “Gilda’s Club.” They have support groups for people with cancer, for their children, and for their caregivers. I remember Deb’s and my conversation last spring, about how hard cancer can be on the people who don’t have it. Maybe it’s just my childhood fondness for Gilda’s SNL characters Lisa Loopner and Emily Litella calling out to me now, or just a trust that Jolie sees something in the girls and in us that we need—but I know immediately when I look into Gilda’s that I want us there.
Lucy, meanwhile, peers over my shoulder suspiciously.
“Are you going to try to make me talk about my feelings?” she asks. “Because if that’s what this is about, I refuse to do it.”
“Me too!” Bea chimes in, like a character out of A. A. Milne.
“Take it easy,” I tell them. “Try to keep an open mind. I just want to check it out. You know, it’s right by the gelato place.” A look passes between the girls, one of their creepy telepathic sister things.
“That means it’s near the pizza place too, right?” Lucy prods.
“I suppose it is,” I coolly reply. Oh, they’re in.
“Would Daddy come too?” Bea asks.
“I think it would be very nice if he did,” I say, even though I haven’t even talked to him yet about putting the family in a support group. He walks past Gilda’s red clubhouse door every day on the way to work. Now it’s time to walk in.
October 27, 2011
It’s two weeks after my first treatment, and I’m at Memorial for monitoring again. Karen runs down a laundry list of side effects. “Itching?” Yes. “Rash?” Yes. “Diarrhea?” Ironically, not since I started the trial.
“Your bowels are otherwise okay? Because we need to know if there are any changes in your bowels.”
“My bowels are amazing,” I say. “If something happens, I promise you’ll be the first to know.”
Karen is all about my bowels. “We are obsessed with bowels here,” she admits to me later. “I’ll tell you, what ipi can do to someone’s bowels is unbelievable. It’s like a full-time job, literally, managing some peo
ple’s bowels. As often as I can, I teach new people who are treating patients with something like ipi: bowels, bowels, bowels.”
My bowels are currently holding their own just fine. There is something else going on, though. Something I’ve been scared to admit to myself, because what if I’m crazy, or just wrong? The discolored bump on my back. This morning I’d looked in the mirror after I stepped out of the shower and thought I saw something impossible. I called Jeff in and asked him, “Is it me or does my lump look different?”
He’d studied it intently. I could tell he was considering his words very carefully. “It’s smaller,” he said.
It’s only been one treatment. We are hallucinating.
Yet when Dr. Wolchok asks, “Can we take a peek at your back?” his response is unhesitant and his delight is undisguised.
“Karen, look at this,” he says. “Well, that is neat.”
“Whoa,” Karen assents. “Look how much it’s gone down.”
He peers at my back and then directly into my eyes. This must be what a ten-speed bike feels like on Christmas morning, because the expression on his face right now is not medical detachment. It’s not unbridled elation either. It’s the pure wonderment that one grants to a wish fulfilled.
“It’s smaller,” he says, just like Jeff did this morning. “Is this tender?” he asks, as he gently prods my flesh with his thumb.
“No,” I say.
Three weeks ago, it was sore to the touch. There’s no big whoop-de-do, no congratulatory handshaking. I just get off the table, gather up my purse and coat, and take my blown mind back to where I need to go next. This isn’t all in my head. This is happening.
Three nights later I am at Fanelli’s with Chez. Chez is a journalist and TV producer who lives in Miami. We became friends after he called me a humorless feminist on his blog, and I wrote him an email to call him a dismissive apologist for the patriarchy. Somehow we clicked. Chez has in his past three ex-wives and a benign but pinball-size brain tumor, and I currently have a fatal form of cancer, so whenever he comes to town we have plenty to bond over. It’s still early in the evening when he asks how the trial is going.
“Not bad,” I say. “I’ve got a crazy rash and I’m wiped out, but now I think I’m over the hump.” I lean in to whisper what I’m still afraid to say out loud, afraid of jinxing it all. “I know it’s nuts, but I think I may be improving. The tumor on my back, it’s weird.”
Chez, ever the newsman, demands evidence. “Let me see,” he says.
It’s been a while since I’ve lifted my top in a bar, but it turns out it’s just like riding a bike. I reach my hand to the hem of my T-shirt and slide the back of it up to the place over my ribs where the mark is.
“I don’t see anything,” he says.
“It’s a purple line,” I tell him. “It looks like a bruise.” I poke my finger to the place I know it is, though it’s difficult to isolate precisely. Just a few days ago I’d have had no trouble locating it by its tender throb alone.
“Nope,” he insists. “Believe me, honey, I’m looking. There’s nothing there.”
I turn my head back and meet his puzzled gaze. “Well, that,” I tell him, “calls for another drink, don’t you think?”
November 1, 2011
For our family’s first night at Gilda’s Club, we go for pizza and gelato beforehand, just as I’d promised the girls. They still don’t seem that into the idea of a support group, but like their mother, they can be talked into almost anything if there’s a melted cheese incentive somewhere in the deal.
Afterward, we stroll over to the cozy-looking building in the West Village, ring the bell, and are ushered inside. The four of us scan the lobby with a first-day-of-school nervousness. It’s a small but inviting room, warmly lit and intimate. Two little boys are wrestling each other while their mother sprawls on the couch, casting heavy-lidded glances from underneath her ski cap in the direction of their shenanigans. The big one looks a year or so younger than Bea. I’d estimate his brother is just out of diapers.
A sunny, soft-spoken young woman with shiny, brown hair emerges from a doorway leading downstairs to the kids’ club called Noogieland. “I’m Emily,” she says, extending her hand first to me and then to Jeff before turning to the girls. “You must be our new Noogies. Come with me.” She looks over at the boys. “You too, Zeke and Mo.”
“Daddy and I have to go up to our groups now too,” I tell the girls. “Have fun tonight.”
Lucy gives me a hug, and as she does, she leans in toward my ear. “If they try to make us talk about our feelings, we’re not coming back,” she stage-whispers.
The woman on the couch looks amused. She hoists herself up wearily and heads toward the elevator with the grown-ups. “They’ll be fine,” she says, “if my boys don’t wear them out.”
“I’m Mary Elizabeth,” I say, extending my hand. “Metastatic melanoma. It’s my first night. This is Jeff. Caregiver, with a side of dead dad grief.”
“Cassandra,” she replies. “I have Stage 4 breast cancer.”
“Sorry I just missed your special month,” I reply, and the way she rolls her eyes tells me immediately I’ve found a comrade.
The elevator ascends, and Jeff and I part to enter our respective rooms. In mine, our serene-looking facilitator, Marlena, is already perusing the sign-in sheet and looking at her watch. Soon the other members of the group file in. The retired teacher. The songwriter. The dot-com entrepreneur. We are an odd assortment of humanity that would never have found ourselves in the same room if we didn’t have this one thing in common. Yet within minutes of conversation, it’s clear we have so much we share—the challenges of parenting, the demands of relationships, the struggles of ambition, and the balancing act of dealing with it all while facing our illnesses. By 8 p.m., I have a new family.
I feel an instant affinity for all of these people, but I like Cassandra first and best. I like the way she plants herself into her place on the couch in our meeting room with a New Yorker’s territorial ruthlessness. I like that she is cranky and sardonic and unflinchingly tender when she speaks of her children.
Afterward, Jeff and I meet up in the hall. “How’d yours go?” I ask.
“It was … fine,” he answers. “They’re a good group. I feel like I can’t say it to too many people outside that you’ve got Stage 4 cancer and I’m so tired. In there it was totally normal. But there’s no way that confronting mortality for two hours isn’t heavy.”
Fortunately, the kids have been doing nothing of the kind. They are beaming when we pick them up downstairs, as Cassandra’s boys run amok around them.
“Did they make you talk about your feelings?” I ask Lucy.
“No,” she laughs. “We ate popcorn, and then we played with doggies.” If you’re going to put your kids in a support group because you have serious cancer, starting out on therapy dogs night is definitely the way to go.
“Jesus,” I say. “Can I switch to your group?”
As we step outside, the relatively mild fall seems to have turned cruelly cold, and I shiver the whole way to the subway. When we get home, I crash into bed and am asleep before the children.
By Thursday, when I drag myself to treatment, I know something is up. “How are you doing?” Karen asks again as she runs through the list of side effects.
“Crappy, actually,” I say. “I think I’m coming down with something, and it has nothing to do with my bowels. It feels like the flu.”
I have my blood pressure checked, and it’s my usual low number. My temperature is normal too. I have two dozen vials of blood drawn. While I wait for my cocktail of drugs to come up from the pharmacy, I go into the closet where they also store the greatest machine in all of Sloan Kettering, the blanket warmer—and grab myself a throw that feels fresh from the dryer. I return to my chemo suite and curl up with the first season of Sherlock on my laptop.
When Susan comes in to check on me, I say, “Listen, I’m not feeling too great. While I’m wai
ting, do you think I could go downstairs to the Duane Reade and get some Tylenol?” The fact that I am in a world-class medical facility, where they probably have access to Tylenol, doesn’t enter my mind.
“Sorry,” she says. “You can’t have anything that would interfere with the treatment.” She takes my temperature again and it’s still normal. An hour later she and I repeat this scene almost verbatim. But by the time my first bag of drugs is wheeled in a short time later, I am shivering uncontrollably. And this time, when Susan takes my temperature, it’s 103.
“Can I get a Tylenol now?” I ask grumpily.
“We need to send you to x-ray first,” she says, “to make sure there’s no infection.” So I go to another floor and get some x-rays to rule out pneumonia, come back, and at last a young resident comes by bearing a tiny cup and two small, white, fever-reducing pills. “We can’t do treatment today,” he explains. “We have to wait to see how you’re reacting.” He looks over at my useless IV tower and the bag of ipi inside it, and the Tylenol in my hand. “Well, I’d guess this has been about a $25,000 day.” Sorry about the high price tag, medical research.
I spend the next few days utterly miserable with fever and chills—and not a little terrified that my painstakingly documented experience at Sloan Kettering will raise enough concerns to get me kicked out of the trial. Fortunately, the crisis passes and nobody benches me. And although there’s no way of saying definitively whether it was just one of the promised side effects of the treatment, my immune system going into overdrive, or an unusually wicked case of the flu, all I know is that as wretched as I feel, I’m not scared that this is a manifestation of my disease. I’m now hopeful that it’s a sign of my improvement.
When I go back to Memorial the following week, I have a scheduled check-in with Dr. Partridge. “I’ve been hearing a lot about what’s been going on with you,” she says. “So let’s take a look.”
She runs her hand over the place on my ribs where, two months ago, there was a welt. “Look how that’s gone down,” she says, obviously impressed. “That Dr. Wolchok is going to put me out of business. Fortunately, I do a beautiful hernia operation.”
A Series of Catastrophes and Miracles Page 19
