“There’s almost always something we can do,” she replies, and she means something far more complex than containing cancer. It’s about finding some measure of control in an utterly out-of-control situation. It’s about not being helpless.
“Okay, then,” I say. “Let Dr. Wolchok’s team know I’m interested in getting on the list for the trial.”
I guess this means we are slowly forming a plan, my cancer team and me, albeit one that may keep changing. Do the ipi. Get the tumor excised. Try to get into the trial. Take it one step at a time. Remember that I am getting lots and lots of help. Try not to hate myself for what’s happening to me.
As I get on the A train heading home, I spy a young man in a black T-shirt getting off. His chest bears a message from the movie Pi—FAITH IN CHAOS. I stand there on the platform, rooted, staring at him, as the doors close. I’m trying, universe. I’m really trying.
But in addition to keeping the faith, you know what else you have to do when you find out you have Stage 4 cancer? You have to do your laundry. You have to buy the groceries. You have to do your job. You have to make sure the kids brush their teeth. You have to clean up and do it all over again the next day that you are just trying to stay around for. The world doesn’t grind to a halt just because your life might.
“Mom’s had a really rough day,” I tell the girls as we walk down Broadway heading homeward from their now dual school pickup, before the daily deluge of homework and cooking and baths. They exchange worried looks at each other and grip hands together. “And I think that calls for a little pampering.” I lead us up a narrow flight of stairs to the Dominican salon, the one over the pawnshop, to get our hair done. Nearly six years into living in the neighborhood, and I still conduct all my business there with a bright “Hola! Que pasa?” followed by a gesture that mimics either the snipping of scissors or the waving of a hair dryer. Why haven’t I ever learned Spanish? What was I waiting for? Now I have stupid cancer and I never even got to learn Spanish.
I am nevertheless feeling the most relaxed I’ve been in weeks as the girls and I sit in our swivel chairs, waving at each other in the mirrors through a thick mist of hair spray. Sure, I’ve got brand-new cancer popping up in my body, but what’s left of my hair is going to look very pretty. Then Lucy’s lady comes over and exchanges a few rapid-fire words with my lady, and I can tell from her tone that this day is not yet finished being crappy.
She speaks only a smattering of English, but the word she lobs at me today is potent. “Lice,” she says, pointing at Lucy’s hair.
“That’s dandruff,” I say, confident of our family legacy of flaky scalp.
“Lice,” she repeats firmly. She looks over at Bea, who’s looking fretful but regal in the chair next to her sister. “I think, the baby too.” Bea promptly bursts into tears.
We settle up quickly and hustle out the door, our hair still slightly damp, burning with shame at the accusation that we’re the lice family. The girls are both sobbing now.
“I swear it’s not lice,” I insist repeatedly, as they mope and cry all the way home. “I will check you thoroughly when we get to the apartment.”
As soon as we walk in and hang up our sweaters, I do just that. I turn on the bright overhead light and sit the girls at the dinner table, don my glasses, and inspect them both. My kids have never had lice. They have dry scalps and get itchy sometimes, but they haven’t been clawing their heads lately or anything. I gingerly pull Lucy’s hair apart at the crown of her head. There, glistening in her thick tangles of waves, are tiny, glistening, not-to-be-argued-with nits. Then I repeat the process, with the same results, on Bea.
Lucy is inconsolable. “I have lice,” she sobs. This day is the goddamn worst.
Now the work begins. I gather up laundry and toss out old hats, and assign the girls the job of pulling their toys off the shelves and their beds and putting them in tightly sealed garbage bags.
When I check in on them in their bedroom a short time later to gauge their progress, Bea is standing mutely in the midst of the mess, holding a small stuffed animal and crying. “It’s just for a little while,” I say.
“I know,” she says. “It’s just, I got this one with Grandpa.”
It’s the unicorn he gave her for her birthday. The last time he saw her.
“He asked me what I was going to name him, and I said that it was a girl, remember?”
“Yeah,” I say. We sit together on the edge of her bottom bunk, Bea snuffling softly. “You miss him. It hurts that you miss him, but it’s good that you loved him, so you just let it out. It’s a lot for a little girl.”
She smiles through her tears, like she always does. She grasps my hand, and though I think I’m trying to comfort her, she looks up at me and says the most generous words of comfort to me. “It’s okay,” she says. “It’ll be okay. We’ll get rid of the lice. And you’re going to be cancer free again too, Mama.” Then I’m the one who’s crying.
By the time Jeff comes home, he is greeted by a trio of semi-hysterical, vermin-riddled females, and he and I set about the grim task of inspecting each other’s heads for bugs like intimate gorilla mates in a nature special. He has miraculously managed to avoid getting even a single nit, but when he checks my scalp, it’s obvious I’m infested too. Man, the repulsive things that happen on my head.
The next day the kids have to stay home from school, so Jeff takes a day off from work, because I have to go in to meet with Dr. Wolchok to begin the preliminary exams for my course of ipi. With my hair pulled back in a very tight bun, I have my weight measured and my treatment schedule discussed because I have metastatic cancer, and I am now also trying not to touch my head because it’s crawling with bugs. It’s a lengthy, stressful morning, so when my friend Joey texts me, “What are you doing right now? Because the answer is, letting Steve and me buy you a drink,” I am all over it. I am woozy with emotion and blood loss. A drink sounds about right.
Joey is an advertising executive, married to a roller derby girl, and Steve is a researcher friend from my years in San Francisco, in town on business for his biotech firm.
I arrive at the French restaurant in a sleeveless red dress, freshly exsanguinated and sporting a large bandage on my arm. “Nice bid for sympathy,” Steve says. “By the way,” he adds, opening his arms for an embrace, “you look beautiful.”
“I have lice,” I reply, and he deftly shifts course for a fraternal pat on the shoulder. “I have lice and I have Stage 4 cancer.”
“And you are,” he answers diplomatically, “the most beautiful woman with lice and Stage 4 cancer I have ever seen. So how are you feeling?”
“Like I’m on the real Wheel of Fortune,” I say. “Like I could land on ‘It’ll Be Okay,’ or ‘Start Making Final Arrangements.’ But I guess I can’t complain,” I continue, launching into a litany of nervous happy talk. “Everybody at Memorial is great. They’re amazing. I’m lucky. Everybody says I’m lucky.”
Joey looks at me, amused. “I’m giving you five more minutes,” he says, “and then I want you to knock it off with how awesome your cancer is.”
“Thank you,” I say, “because I’m scared. I’m scared and I have lice.”
In search of some measure of intellectual grasp on my increasingly chaotic situation, I ask Steve for some inside dish on Yervoy—and about the combination trial I’m currently wait-listed for. Joey, meanwhile, is tasked with the pressing matter of getting us a minimum of one bottle of wine, ASAP.
“The anti-CTL-4 has already had some very interesting results in monotherapy,” Steve says, “and there’s an awful lot of excitement around the early research with this other anti-PD-1.” This is fancyscience-guy talk for saying that Yervoy, by itself, seems to do the job for some people, and the new drug looks good too. But the kicker—the thing even I understand—is when he says, “These kinds of treatments tend to be superexpensive, and using them in combination is almost unheard of. If I were you, I would try to get in this trial and stay on it as long
as I could possibly tolerate it. If you get in, do everything you can to not drop out. If you quit, you’re going to have trouble getting in another trial. In the meantime, you’re getting an unbelievable deal here. For the cost of the drugs, your net gain on this would be extraordinary.” Assuming, of course, that it works.
I’m still having a hard time grasping the science of it all, but I am great at sniffing out a bargain. More than that, though, I can tell from Steve’s enthusiasm that he wants this for me. He knows all too well that my very few other treatment options offer slim chance of survival.
On Saturday, Jennifer, a woman known to uptown parents as the resident local lice guru, comes over. Normally Jeff and I would have tried to suck it up and handle the crisis on our own with some hastily purchased products from Rite Aid, but this has been a pretty outside-the-box week—and Jeff and I feel that if ever there was a problem that needed us to throw a little money at it, this would be the one.
“Before you do the girls,” I tell Jennifer, “I need to explain a few things about my condition. I have cancer and I have a skin graft on my head. The graft’s over a year old and it’s solid, but you just need to be gentle around the edges.”
She looks unhappy. “Let me see,” she says, and as I bend my head forward and part my hair, she continues. “I don’t know. I’ve never done a job like that.”
“It’s fine,” I repeat. “You just have to be gentle at the edges of the graft.” She continues to look unhappy as she sets to work.
Jennifer combs through the girls’ hair while simultaneously maintaining a constant level of cell phone chatter. She first turns her attention to Lucy and her tremendous mane of thick curls, and then moves on to Bea and her long, straight tresses. The girls sit patiently on dining room chairs parked in front of the TV the whole time, enjoying an epic binge of the High School Musical trilogy. Jeff and I, in the meantime, run back and forth to hog up the laundry room with the most recently used sheets and clothes.
I am walking in the door with a pile of fresh from the piping-hot dryer towels and Gabriela is joining Troy for a conflict-resolving duet when I notice that Jennifer is nowhere to be seen. Jeff, meanwhile, is looking at me like he does when he has to tell me I have cancer. “She left,” he says. “She said she didn’t think she could do you.”
This is a woman who combs bugs out of children’s hair for a living, but my head was too much. She couldn’t even face me to tell me. She waited till I was gone for a few minutes to run away. My stupid disfigured head. I feel ashamed, and I’d be full of rage if I wasn’t busy being completely defeated. The coward couldn’t even say to my face she was leaving. “I’m such a mess,” I say, sobbing. “I’m disgusting.”
Bea pats my hand gently. “I feel sad for you,” she says, plainly.
“It’s, okay, Bea; Mom’s just feeling her feelings again,” says Lucy. I have spent most of my children’s lives trying to be strong and reassuring for them. Lately all I do is fall apart in front of them. I’ve always told them it’s okay to cry, but I never set them up for Mama to be the crying one. I don’t know how to protect them from this.
“It’s not a big deal,” Jeff says. “I watched her do the kids. I’m going to go out right now and buy a big bottle of Pantene and a special comb, and Tania can go screw herself.”
“Her name is Jennifer,” I say.
“And Jennifer,” he replies, “can go screw herself.”
We spend the rest of the weekend doing impossible amounts of laundry, dragging fine-tooth combs through each other’s hair, and smothering bugs under shower caps and mayo. I had thought March was going to take the prize for crappiest month of the year, but wake me up when September ends. For our efforts, the kids will henceforth have a violent aversion to Hellmann’s, permanently eradicating tuna fish salad from our lunch repertoire.
On Monday, Lucy’s new school has a meet-and-greet party for the families of the sixth graders and their teachers. I am indifferently regarding a fruit plate—lately my appetite, the one thing in my life that has never failed me, has all but disappeared—when I hear a “Mary Elizabeth? Is that you?” from down the hallway. It’s a mom from our old school back in Brooklyn. Her son and my daughter are now, once again, classmates.
“It’s been forever!” she says. “How are you? How come you don’t keep up your personal blog anymore? You hardly ever update it.”
“Yeah,” I reply, “things have been busy.”
She regards me skeptically. “Busy? Like how?” she demands.
“Well, I have my work and the kids,” I say—and then I decide, Let’s just get it over with, so I add, “Also, I have cancer.”
She blinks. She cocks her head warily. Then she says, “I didn’t know you’re a survivor.”
“I’m not,” I reply. “I have cancer.”
Her face drops. Perhaps she’s flummoxed by the awkwardness of her assumption, but whatever the cause, there’s a clear “Get me out of here” expression on her countenance. “Oh,” she says. “Well, good luck.” With that, she walks quickly away, melting into the crowd of healthier adults and children. As I watch her disappear, I feel broken and useless, like a battered umbrella to be tossed in the trash. Stage 4 may not be what it used to be, but I’ll tell you this much—it’s still a very small, very lonely club.
CHAPTER 15
Lab Rat
September 2011
It is now getting very bad, and it’s happening very quickly. I feel like hell. I suppose it means that I’m dying. It could just be anxiety, but if anxiety means that a person cannot keep any food or liquid in her body, it’s still a problem.
My digestive system has now gone on a full strike, refusing to accept even a glass of water without vengefully hurling it back out. I’ll be at my desk working, and I’ll nibble a bite of toast, trying to quell the urgent hunger. A half hour later I’ll feel the cramping in my gut, like a fist in there squeezing it. I’ll run to the bathroom again, and make it just in time. I am consequently weak and woozy, my stomach growling demands to be sated, the other parts furiously vomiting and crapping out everything I try to get down. It’s what happened to Dad, at the end. His body no longer accepted sustenance. I remember the swampy carafe of his fluids draining by his bedside, and wonder if my body is now eating away at itself too. This is how it starts, I think, exhausted by the dual demands my body is making to fill and evacuate as undigested bits of food stream out of me. Then I clean myself up and go pick up the kids from school.
I’m supposed to start on the Yervoy next week. How will I get through it, when I’m falling apart before it even starts? I am hurtling into the darkness. I never call the doctor, because what if I go to the hospital and I never come home? I’m scared not just of dying—although that certainly is not a ride I’m ready to take—but of what happens when I’m dead. I’m a parent, a partner, and a provider. I care for the kids; I pay half the mortgage. Take me out of the picture and there is an emotional and, frankly, financial, void. I’m imagining Jeff and the kids plunged into economic chaos as well as grief. They’d have to move. Maybe get a cheap rental on the other side of Broadway. Or sell the apartment and move in with Jeff’s mom. Damn, and in this market. I’d be the lucky one. I’d just have to die. They’d be stuck with this mess I’d leave behind.
As the days count down to the start of my new treatment, I do my yoga and my meditation. I try so hard to let it all go. Then I panic and I stagger to the bathroom again. I just want to stay, I think as I toss fitfully in bed. I want to stay. I don’t want to leave my children, not yet. I say it to myself a million times, over and over and over, like the drunk who won’t leave the party. I want to stay. Don’t make me leave. Not now, not yet. The school year has barely started and I’m scared I won’t see the end of it. Will I see the cherry blossoms in the Botanic Garden in the spring? Will I get to Christmas? Will I make it even to my birthday? Everything I ever thought about the futility of treatments that might only give people who have a fatal disease just a few more mo
nths anyway—everything I believed about the pointlessness of it—right now, I take it back. I may well have only a few months, but I want those few months very much. If I could do something to get a few more months on top of that, I’d like to take them too.
It’s early evening when the doorbell rings. I haven’t even started making dinner yet, a dinner I strongly doubt I will be able to digest a morsel of. When I open the door, it’s the two little girls from down the hall who go to school with Bea, and our three other neighbor kids from down the street. They’re holding a tall chocolate cake. Spelled out on it, in white candy stars, are the words “FUCK CANCER.”
“Our moms made you something,” Natalie, age six, explains. “It has a bad word on it.”
“Sometimes in life,” I say, “you need a bad word.” Then I turn toward Lucy and Bea, doing their homework at the dinner table and say, “Kids, get the plates.”
Within a few minutes, the children’s parents show up bearing ice cream, sprinkles, syrup, and Reddi-wip. “I told Natalie,” her mother, Kristin, explains, “that it was okay to use the bad word because it would make you smile.”
“It does,” I say. “I’m impressed with both the sentiment and the kerning.”
By the time Jeff walks in the door, we have already doled out many slices of cake and scoops of ice cream. I hold my plate and pose for photos, but I can barely get in a bite. If there was a symbolic conquest to be made via consumption of the chocolate cancer cake, I have failed. But if this was a reminder that our family is not alone in this whole miserable thing, then tonight, we’ve all succeeded quite mightily.
On the Tuesday before I’m supposed to have my first ipi treatment, Dr. Wolchok’s office calls. “There’s a new spot in the trial,” he tells me. “Are you still interested?” I wonder if this means the trial is expanding, or if someone has dropped out or not qualified, or perhaps even, miraculously, gotten better. I hate to consider the other possibility of why that spot has so abruptly become available. My nurse Karen will later speculate, “It could mean we had decided to expand the trial for your dose. It could be somebody’s screening failed. It could be they were in the process of eligibility and then they didn’t qualify. We had to look at patients based on how well or how sick they were. A clinical trial—it is a lot of responsibility for the patient. And unfortunately, for the very sick,” she adds, “this is not always the best avenue for them to take.” Fortunately for me, it looks like I am just sick enough.
A Series of Catastrophes and Miracles Page 16
