December 9, 2011
We’ve never been a family big on Santa. In fact, Lucy’s long held an active distrust of him, an aversion she’s made plain since she told us, as a strangers-averse toddler, she did not want him to come to our apartment. Now she’s almost 12 and mostly past the reindeer-on-the-roof phase of life anyway. But when Bea sat down recently at the dinner table to compose her Christmas list, Lucy had sat down next to her and written one too. When I’d asked to read it, she’d refused, saying that it was for Santa’s eyes only—and that she wanted to see him. “Maybe I just want to tell him he sits on a throne of lies,” she’d added, covering all her bases, belief and skepticism and Elf references–wise.
We’d trekked downtown to Herald Square, and it was everything Miracle on 34th Street and “SantaLand Diaries” had ever made me believe it would be—unbridled mayhem but also oddly sweet. We’d waited a long time as we snaked through an ersatz winter wonderland, until an adult dressed as an elf ushered us into a private area for a brief audience with Kris Kringle. The girls whispered wishes, and then the three of us sat together with him, smiling and laughing, for a photograph. We had Christmas and Santa, and going to Macy’s with Mama. And though neither girl will ever tell me what they murmured into Santa’s ear, I have a few ideas. I know what I’m wishing for this year myself.
Now, at the winter party in the homey backroom of our Gilda’s clubhouse, the girls play with Cassandra’s boys and their friend Donna, whose mother has Stage 4 colon cancer. The grown-ups sit together eating carrot sticks and cookies. I chat up Jeff’s friend June from the caregiver group, and her wife, Evie, who has inoperable lung cancer. Across the room, Jeff chitchats with my musician friend Hugo and his stunning new girlfriend. Cassandra, meanwhile, holds court in the lobby, with the queenly air of someone who believes if you’re worthy of an audience, you’ll come to her. “Where have you been?” she asks when I flop next to her for a few minutes of snark and gossip. “I’ve been so bored.”
“I was talking to Hugo,” I say, “about the benefit concert he’s putting together. How are you? How did the Neulasta shot go this week?”
“It was like,” she says, as her eyes turn toward the snowflake decorations hanging from the ceiling as if they contain adjectives, “it was like I was on fire. Or like I was made of glass. And I was shattering.”
“Yow,” I reply. Sometimes, when I consider what people can live with and keep going, it shocks me. It’s like after I had a baby, and realized that the world is full of exhausted women with lacerated perinea and clogged milk ducts who are managing to successfully keep small, helpless human beings alive. Now I know it’s also full of people who go to the doctor and have shattering experiences and then show up with their kids for parties. Unbelievable.
“How are you feeling now?” I ask.
Cassandra is not one to mince words. “The truth is that I feel angry,” she replies. “I’m angry at everybody who isn’t sick. I’m angry that they get to live their lives and make plans and I’m too tired to play with my kids.” She doesn’t look good tonight, in her knit hat and sweatpants falling loosely over her thin frame. She reaches into her bag, pulls out her cell phone, and brings up a photograph of a chubby blond woman, smiling and holding a fat baby. I’ve never seen this woman. But I know exactly who she is. “That was two years ago,” she says. “Back then, I wouldn’t have gone near a thing like this.” In another life, this all would have been way too lame for her. “And how are you?”
“Oh you know,” I say, lightly. “Work. Treatment. Family. Holidays. Still just trying to be Wonder Woman.”
She laughs, right in my face, at me. “Well, cut the shit,” she says. “Wonder Woman didn’t have cancer.” She makes an excellent point. I never imagined that having it all would include having cancer.
At some point there’s a raffle, and Lucy wins a lovely chemo scarf. Then Lily, the club’s president, comes in to introduce three impossibly fresh-looking Julliard students. “We’re going to play some songs for you,” says a tiny Asian girl clutching a violin, right before she launches into “Amazing Grace.”
God, what a cliché. I have never liked that song, not even as a devout, churchgoing child. It always seemed so flat and dirgelike, so wildly overused. Yet when I look around this room, on this night, at all these faces, it doesn’t sound tired at all. For the first time in my life, I feel like I’m actually listening to the song—its first two words in particular. Amazing grace. Not soft and friendly, Hallmark card grace. Amazing grace. Like, blow your mind, rock your world, bring you to your knees grace. A Christmas ago, Dad was singing this song in church. A year from now, several of these people won’t be here for the next holiday party, and that will forever change the lives of so many of the other people in this room. The spouses and the children and the friends and girlfriends and parents. Yet here we are tonight, a community united in friendship and devotion by the worst thing that ever happened to us. I sit back in my director’s chair with the name of another member on the back, clutching a paper plate of Carr’s crackers and bright orange cheese, rapt with amazement. And grace.
CHAPTER 18
The Valedictorian
January 10, 2012
It’s two weeks after Christmas, just a few days into the new year. The new year I have lived to see. It’s the night I’ve won the cancer lottery. The night I will forever more hope to mark as my “Cancer free since …” date. My new birthday. Because I had my scans this morning, and I just got off the phone with Dr. Wolchok.
There’s never an optimum location for bad news, but I could not possibly receive good news in a better place than right here at Gilda’s Club, immediately before going in to my support group.
Our session tonight was surreal, in the nicest way. Everybody’s got their own stuff going on, and some of it’s really serious. Cassandra looks so tired lately. Ned has his big surgery next week. Yet my friends had all congratulated me, cried happy tears with me, when I told them that Dr. Wolchok had just informed me that my tumors are gone.
Downstairs, Noogieland is decorated with balloons and crepe paper. Tomorrow is the girls’ birthday. As a preschooler, Lucy bragged to her friends about her baby sister before I was even pregnant. Her conviction was so convincing, like a Fox News reporter in heavy spin mode, that this other member of the family somehow seemed inevitable. Beatrice arrived on the morning Lucy turned four, an event they both describe as the best birthday present each ever got. When Lucy came to visit the hospital that afternoon, she regarded her new sister like she was a loved one who’d finally come home after a long time away. “There you are,” she’d murmured, as she climbed into the bed with us. Bea snuggled right into her. They just fit.
Tonight, Emily and the other Noogies have thrown the girls a birthday party. Everybody is smiling and wiping cake crumbs off their mouths when Jeff and I walk in the room, ready to deliver the message from Dr. Wolchok.
I have learned not to say things to the girls like, “I have to talk to you,” because it freaks them out. They are traumatized by the past year and a half of consistently horrible stuff. I will instead smile and say, “Mama just got some good news.”
That was the idea, anyway. Unfortunately, as soon as I see my children, as soon as it sinks in that I get to keep being their mom a little longer, I promptly burst into overwhelmed, grateful tears.
“Oh my God, what’s wrong?” asks Lucy.
“Mommy, what happened?” says Bea. “Is it bad news? Did someone die?”
I mutely gesture at Jeff, trying to indicate to tell them that it’s all okay. “Nonononono,” I burble, which doesn’t help. Finally, I manage to get it out. “I’m cancer free. My scans were clear.”
The kids look at their father, puzzled that Mom is basically behaving exactly like she does when she gets terrible news. They hug me tentatively as I just cry and cry like an idiot.
In my photo from that evening, the girls are sitting with their arms slung around each other, smiling. Their friend Don
na is next to Bea, looking demure, and Zeke is on Lucy’s side, making a goofy face. In just a few weeks, both Donna’s and Zeke’s mothers will be gone.
Two days later, I am back at MSKCC for treatment. Twelve weeks into my trial, and I’m a pro at this by now—I’ve got my yoga pants and extra-warm cashmere sweater on to keep me cozy, my laptop for watching escapist TV shows on Netflix, and a SmartWater in one hand and a fresh Jamba Juice in the other to fortify me for all the blood they’re about to take out. It makes me think of the last time I had lunch with my friend Bruce. He had talked about how he’s been doing since his company went under and his parents died, and he’d said, “I used to feel like I was waiting for my life to get back to normal. Now I see, this is my life now. So this is my normal.” This is mine.
First, though, I have to get my vitals checked and consult with Dr. Wolchok, Karen, and the medical team. As I walk toward the examination room, I can feel the penetrating gazes of a row of interns and administrators. They’re not even trying to be cool about it. I feel like I should be waving from a float while they toss rose petals at me. I knew they would be excited about my results, but it’s not often you see such a celebratory mood on the cancer treatment floor. By the time I get to the exam room, I’m surprised that there isn’t a sash and tiara waiting for me. A few minutes later, Dr. Wolchok walks through the door, looking considerably pleased.
I am, however, still in a state of cautious optimism. In cancer, we don’t like to use words like “cured.” We instead grudgingly bear the weight of other ones. Words like “recurrence rate” and “five years out.” The memory of my kids pummeling me with kisses and declaring, “You’re cancer free!” after my first surgery is a little too fresh. So when Dr. Wolchok says, “You present no evidence of disease” less than five months after being diagnosed at Stage 4 and just three months into treatment, I’m not entirely sure what to make of it.
“Tell me more about what the scans mean,” I implore him. “You say the tumors are gone, but could there still be cancer in my bloodstream?”
He gives a “meh” face. “The idea with immunotherapy is that your system goes after the places there’s disease,” he explains. “If we’re not seeing the cancer where we know it’s been, we can assume it’s not showing up anyplace else. We still don’t have long-term data, but what we believe is that this treatment activates your immune system to keep defending itself in the future. It’s not rocket science.”
“Yeah,” I say, “but it does seem to be curing cancer, and that’s not too shabby.”
The immune system learns, and it remembers. That’s why I only got chicken pox once. The experience taught my body—the one I’ve lately been so angry at for turning on me so viciously—how to keep from getting it again. Now it’s doing the same with cancer, kicking ass and taking names anywhere it suspects trouble. That’s what this type of treatment does. The implications—not just for my cancer but other cancers—are almost limitless. Or, as my nurse Karen likes to put it, “It’s the immune system, stupid.”
Yet the urgent question remains: Why does this type of therapy work for some of us and not others? If any of the other handful of us doing this trial at MSKCC are anything like me, they’ve been dealing with scarred veins, side effects—and plenty of nagging uncertainty. Science is moving at a breathtaking clip, but when you’ve got a cancer that tends to kill within a year, it simply may not be fast enough for everybody.
“We had two other patients who had scans this week,” Dr. Wolchok continues. “Both of their tumors have shrunk significantly. But you’re at 100 percent, so for now that makes you our valedictorian.”
“I’m just here to win,” I say.
He nods. “Well, congratulations,” he says. “Because, believe me, when a person with Stage 4 cancer has a complete response, that gets our attention.” Oh, mine too.
I figure today I can hear it. Today, I need to. “So, exactly how bad is Stage 4?” I ask Dr. Wolchok. “Because Dr. Partridge says it’s not what it used to be.”
For once, Dr. Wolchok looks at a loss for words. “Ah, well,” he stammers. “People don’t usually ask me in those terms. They generally want to hear how bad it isn’t.”
“Yes, but I’m your medical miracle, and I want to know.”
He nods. “Melanoma cells are pretty tough. Think about it—they’re what give you your skin color. They’re designed to change and adapt and move around. That’s why they’re so resistant to conventional treatment. With other cancers, they often follow a predictable path. You rarely hear about cancer spreading into the small intestine or a tumor in the heart. With melanoma, you do.” He pauses, searching for a phrase that will convey the seriousness of my case without making me launch into a full-blown panic attack. “You had a growth in your lung and an aggressive subcutaneous tumor, so we knew this thing wasn’t fooling around. Your original tumor in your lung was growing. And,” he adds, “there was the new one on your back.”
I ask, “Was the tumor on my back the game changer? Did it mean the cancer was progressing much more quickly?”
“Not necessarily,” he replies, cautiously. “Of course, any new tumor, regardless of where it is, compels you to do something. But I’ve never been a fan of counting the number of tumors that a person has, because the treatment that I’m usually offering people is one that affects the whole body. I try to reel people in from the numbers because the numbers can be very overwhelming.” He’s a diplomatic man. Though he will never say it to me directly, he’ll later mention in an interview, “The textbooks would say that a patient with metastatic melanoma lives, on average, a bit more than a year.”
“So what do I tell people now?” I ask him. “How do I describe where I am in this?”
“You can tell people,” he says, “that you had a complete response.” In cancer, a complete response means you have no detectable signs of disease. “You can tell them,” Dr. Wolchok continues, “that you had Stage 4 cancer.” Past tense. My official report from the CT scan, meanwhile, refers to my tumors as “resolved.” I love the icy cool of that. It’s a very mafia word, or maybe a Cold War spy one. Those cells that betrayed your body, Ms. W? They won’t be bothering you any more. They’ve been “resolved.” Which, in addition to being one of the best things that ever happened to me, is also a pretty damn fantastic—and not terribly common—thing to happen in the first cohort of a Phase 1 trial for cancer research. To a team of researchers and to Bristol-Myers Squibb, I am no longer the patient with Stage 4 cancer. I am the patient with solid results. I’m like Harry Potter, the boy who lived. I am the woman who did.
I am not the only one this is happening to. I just don’t know the details yet. I don’t know about the people from the original ipi trial who now, years after they completed it, are still thriving. I don’t know about other patients like the one Dr. Wolchok later tells me about.
“This other gentleman—who doesn’t even come back to see us anymore because he’s out living his life—had a subcutaneous tumor he would point out to us every time he came in that kept getting smaller and smaller,” he says. “Around the time of the fourth treatment, I said to Dr. Partridge, ‘This guy is getting better, can you take this thing off his back? Because I can still feel it. It’s a lot smaller, but I’m dying to know what’s going on in there.’ I remember there was a jaded surgery fellow working with her that day, and I ran up and asked, ‘What did it look like? Was it all white cells?’ He said, ‘No, it was all black. It was just melanoma.’ I walked away all dejected. Then I waited for the pathology report. It’s still hanging on the corkboard above my desk. A ‘histological picture of therapeutic success’—that was what the pathologist wrote to me. There was no melanoma left. There was just the pigment-laden debris. That was the beginning.” He adds, “We also had people in your dose cohort who didn’t do well. So it wasn’t as if we had this expectation that you were going to do great too. But,” and at this point he gives an eminently relieved shrug, “I could believe it.”
&nb
sp; That means that right now, there is the possibility that the middle-aged woman in Treatment Suite 26, the one whose elderly father sits by her side as they watch Dr. Phil together, is getting better. That the student in Suite 21, who endured a hellish year on interferon before he came here, is. That Frank, wearing his 007 T-shirt and talking to his old high school friend turned nurse in Suite 22, is too. That a whole lot more of us have the possibility that the fluid coursing into our veins is more powerful than the cells multiplying in our bodies.
This bleak winter morning is a quietly auspicious one. At a future CT scan, an oncology nurse elsewhere in Memorial Sloan Kettering will be chatting with me while taking my blood pressure and say, “You must be the one I’ve been hearing about.” Months from now my friend Steve will tell me about being at a cancer event and hearing the buzz about, as he describes, it “some blogger lady with No Evidence of Disease.” And Nils Lonberg will later describe to me seeing Dr. Wolchok at a conference in Washington, D.C., soon after and having him excitedly tell him about a woman in the trial he’d seen that week. As he recalls it, “Jedd was just hopping up and down. He came running over and said, ‘We’ve got a complete response.’ We were in tears.” He will smile at the memory. “I bet that was you.”
“So, do you want to see your scans?” Dr. Wolchok asks.
“Oh hell yes,” I reply.
He sidles over to a monitor in the corner of the exam room and brings up an image. It’s dated October 6, 2011. “This is your lung,” he says. “See that there? That blob? That’s the tumor.” I peer at the screen. Well, hello, cancer.
He brings up another image right next to it. “This is it now.” It looks just like the other one, but with one significant difference. No blob. He then does the same for the pictures of my back. “Here’s the cancer,” he says. There’s a green arrow pointing to it, a flag that some radiologist added three months ago, a signpost of malignancy in my soft tissue. “And this,” he says, double-clicking on a different picture, “is you now. Nothing.” It’s the most beautiful absence in the world.
A Series of Catastrophes and Miracles Page 20
