Not that single compounds are out of the game—far from it. On March 25—exactly one day after Dad died—a story in the New York Times had caught my eye. It was about how “The first drug shown to prolong the lives of people with the skin cancer melanoma” had won approval from the Food and Drug Administration that day. The treatment, ipilimumab—also known by its Bristol-Myers Squibb brand name Yervoy—is the first new melanoma drug approved by the FDA in more than a decade. It works differently from conventional cancer treatment, by activating the patient’s immune system to destroy deadly disease cells. It’s the drug Dr. Esposito told me about last fall.
Cancer cells set off inhibitory mechanisms in our invader-fighting T cells. But a protein receptor called CTLA-4, which lives on the surface of those T cells, can be manipulated. That’s what ipilimumab does. It’s what’s known as a monoclonal antibody therapy (that’s what the “mab” in ipilimumab stands for), using antibodies made—and copied—in a lab, and then introduced into the patient to release the CTLA-4 braking system—so the T cells can attack the cancer.
Ipilimumab is also unusual—and controversial—for its astronomically high cost and its still relatively low survival rate. The current protocol is four treatments, and the price tag is—holy crap—around $120,000, a price tag that Dr. James Allison himself will later refer to in a newspaper interview as “obscene.” I assume it’s made of pixie blood and treasures from the lost city of Atlantis.
For that kind of money, for what Bristol-Myers Squibb notes in its press release is “the first and only drug therapy for melanoma to demonstrate significant improvement in survival,” you think you’d be getting a sure thing. Then you’d read the part boasting: “Median survival was ten months.” When you’re dealing with a deadly disease, just getting a little extra time is enough to be considered a triumph. But the kicker—the thing harder to discern in the midst of the media blitz—is that intriguingly, there are people on Yervoy who get much more.
The New York Times story notes, “More than 20 percent of the people who received Yervoy in the trial lived at least two years.” That’s not the kind of statistic that inspires loads of confidence. But this is the part that’s interesting. Trials have to have end points. The data won’t necessarily tell you about the people who live much, much longer. And the appeal of immunotherapy is that when it works, it looks like it really works. It’s like what William Coley saw more than a century ago—a population of patients who get better and stay better. That includes patients who get better without technically being cured.
The approval of Yervoy represents a small yet seismic shift in the way cancer is being viewed and treated. It’s a newer perspective, with an emphasis on overall survival. And it’s a treatment that doesn’t involve the typical grueling, traumatizing rigors of hair loss and nausea—protocols so rigorous and daunting that, as one of my oncology nurses says, patients are often scared off treatment entirely. “They see people who’ve lost their hair and lost weight, people who are throwing up. They don’t want to look sick.” That’s one of the many funny things about cancer—it’s often the treatment, not the disease itself, that makes you feel like hell. Heck, I walked around all last summer feeling just fine, while my melanoma was quietly burrowing its way into my head.
“Mary Williams?” says an administrator who looks exactly like George Michael, circa the Thatcher years. I cannot even be bothered to correct him.
Soon, I am sitting on the edge of the exam table in my seersucker as an intern I’ve never met before pads his fingertips around my neck, checking my lymph nodes. “Now go like this,” he says, putting his elbows straight out to the side and his hands up in the air, like he’s modeling for a hieroglyph. I take a deep nervous breath, and he begins to probe around the nodes under my arms. I instinctively swat him away, and then dissolve into helpless, shrieking giggles.
“Okay, so you’re ticklish,” he says.
“I apologize,” I reply. “I can do this.” I put up my arms again. As soon as he moves toward me, I clamp them shut again, and I’m laughing so hard now I can barely breathe. “This never happens,” I explain sheepishly. “I’m going to think very sad thoughts now. I just had a death in my family, so that should help.” I raise my arms up again and bite my lip, contemplating how much my children’s education IRA has depreciated recently and how rapidly the rain forest is disappearing. “Your hands could be warmer,” I say, squirming like mad while tittering uncontrollably as he proceeds to prod around my groin. I try to make light, distracting conversation. “Is melanoma going to be your specialty?”
“Actually,” he says, “I’m pursuing colon cancer.”
“Well, you won’t get a lot of laughs when you do those exams,” I say. He looks considerably less amused than I am as he scrawls on a clipboard and exits hastily.
Dr. Partridge comes in to go over my last labs and scans and to do some follow-up poking around. “Everything looks great,” she says. “You still have these two growths on your lung. They’re very small, but we need to keep an eye on them. We’ll check again in July. They could be scar tissue, or benign growths.” Or, though she doesn’t come out and say it, cancer.
Although much depends on factors including a person’s initial staging and treatment, melanoma has a comeback rate that could rival Robert Downey, Jr.’s. Doctors often speak of recurrence in terms not of if but when. People who’ve already had melanoma are nine times likelier to develop new melanomas than those who have not. The Cleveland Clinic Center for Continuing Education estimates that “Despite adequate surgical resection of the primary melanoma, approximately 15 percent to 36 percent of patients with Stages 1 and 2 melanoma will have some form of recurrence or metastasis during their clinical course.” In other words, the expectation that I will have cancer again is ever present.
After my appointment, I go down the street to a vegetarian restaurant for a steamy bowl of pea soup and a roll, and to bury my nose in Nathaniel Philbrick’s Mayflower. I learned early on in this cancer adventure to make a special day of it when I go to Sloan Kettering. It takes a daunting amount of emotional energy, and afterward all I’m usually good for is weeping and ice cream. Debbie likewise has a routine—for her, it’s all about those South Philly Italian sandwiches near her treatment facility.
Ever since our thwarted weekend in March, Deb and I have been trying to figure out a time to reschedule, something that won’t conflict with her sons’ Little League practice or a close family member dying. As I do a quick email check before heading home, I see she’s sent me not only some dates in May but also some exceptionally good news. “The doctor says I have only two more chemo treatments to go. Then it’s a year of the drugs. She even says my hair should come back pretty quickly.” I’m sure a year of medication is no picnic, but it says that there’s another year to be had. It says that there will be a 2012. “Jeff and the kids are welcome too,” she adds. “Mike and the boys would like to see them.” It’s not the one-on-one chick weekend I’d originally envisioned, but it might be very therapeutic for Mike and Jeff to spend some time together.
CHAPTER 11
Wig Out
May 2011
It feels like the season turned to summer overnight. There’s something about the change, and moving on, that’s both wonderful and terrible. It snowed the morning Dad died. Now, as the temperatures rise, the grief is subsiding, but there’s a strange guilt too. There’s comfort in staying in place. It makes you feel close to the one who’s gone. Moving on can feel like forgetting, and bring surprising new jabs of pain. I’m getting used to the bittersweet, though. Like seeing Deb and her family this weekend.
As the end of her chemo had approached, I’d sent Debbie a congratulatory gift—a print emblazoned with the words BAD HAIR DAY. Then, just two weeks ago, she’d called. “They found a two-centimeter tumor on my vaginal cuff,” she told me. She’s starting a new round of chemo soon, this time with Avastin. I have decided she’s going to be okay, because she has to be okay.
As we pull into Debbie’s drive, I spy a lanky, bespectacled, dark-haired figure through the window. For a crazy split second, I think it’s her. Of course it’s not. It’s her son Tim. The bald lady coming out the front door, the one with no eyebrows and the Steven Van Zandt scarf action, that’s Debbie.
“Welcome to our shit show,” she says as she ambles toward the car, and my children tumble out of it. The last time we got together was 14 months ago. I’d come down to Philly in the midst of what turned out to be a ludicrous nor’easter that destroyed my umbrella and soaked through my luggage. We’d practically blown all the way to our friend Cathy’s restaurant, shivering and famished, but when the food arrived, Debbie complained of a stomachache and could barely touch anything. For Halloween, she’d dressed as Medusa, just days before the diagnosis. I’ve got to give her credit—she’s damn near cinematic in her ominous portents.
We regard each other almost sheepishly now. We’ve seen each other drunk and walk of shamed and pregnant, but with cancer? This is new. “Hey now,” I tell her, as we part from an awkward hug, “your arms are so smooth.”
“You should see my legs,” she replies.
“I’m sure your entire bathing suit area is like a porn star’s,” I retort.
Mike, meanwhile, slaps Jeff on the back. “Hey man, I’m sorry. When all this happened, I really kept meaning to reach out to you,” he says. “I would have if I wasn’t so lazy.”
“Yeah, me too,” he replies.
Deb and I feed the kids first, dishing out grilled cheese sandwiches hot off the panini press while Jeff and Mike bond. Then, after the children have eaten, the grown-ups sit together outside at the big picnic bench, munching on crackers and the Rice Krispie treats I’ve brought.
“I lost my job,” Mike says. “Same day they found Deb’s new tumor.” Then he breaks into a sardonic chuckle as Jeff’s and my jaws drop. “Yeah,” he says. “I was saving that one for when you got here.”
“Can you believe it?” Debbie says. “Hey, let’s lay off the guy whose wife has cancer.”
“People have been very generous, though” says Mike. “When someone gets sick or you lose your job, you get all these lasagnas.” He thinks a moment. “I hate lasagna now.”
“We got potpies,” I tell him. “First it was the cancer potpies and then it was the dead dad potpies. They got us through some rough days, and I never want to look at another potpie again.”
In the afternoon, the kids run around Mike and Deb’s big house and their big yard. They clamber up into the tree house; they go bananas on the trampoline. At a certain point I find myself jumping along with them. Debbie’s son Adam does effortless somersaults, but the girls and I stick to chasing each other around, leaping ever higher and higher. I feel weightless and free.
“It’s all been hard on Mike,” Debbie says later. “He’s so frustrated.”
“When it’s your own cancer, it’s tough because you feel like you have no control over what’s happening to you,” I tell her. “Seeing it with you and with Dad, I get it now that when it’s someone you love, it’s a different kind of tough. Because then you really have no control.”
Later we go to the local Strawberry Festival, where there are sack races and pie-baking contests and a fire truck just for climbing around on. Lucy correctly guesses the number of candies in a giant jar and wins them, a triumph for the visiting team.
As the fair winds down, Deb and I take off to have dinner together at Cathy’s restaurant. “Don’t get cancer,” we yell in unison to Mike and Jeff. “Unless you already have it!” We guffaw as the car roars away.
On the drive, we talk, just a couple of cancer club ladies alone. It’s then that Debbie tells me at last the full story of her diagnosis, and all about her former doctor.
“I hate that woman,” she says. “I was having problems for months—months. Remember?” I do. “I got deathly sick in February of last year. That was the beginning of the symptoms. My doctor didn’t even want to look at me. She told me to stop drinking milk. She said, ‘When you get to be our age, a lot of women become lactose intolerant.’ ”
“Turns out you were cancer intolerant,” I say.
“Then I went in for tests in the spring and she said, ‘We found some cysts. Let’s wait and see.’ She told me to take Tums. Finally, at the end of the summer, I went in for a regular appointment and I said I was still having problems. She said they’d remove the cysts laparoscopically. I’ll never forget it. She said, ‘If that’s what you want.’ ” You bet, that’s what she wanted. I hate to imagine what would have happened if she hadn’t.
“It was during the surgery they found the cancer,” she continues, “and my doctor decided to try to take it out right there instead of closing me up and sending me to a real cancer doctor. She had no business whatsoever doing what she did. It was like the Keystone Cops operating on me. When I woke up, it was, ‘Oh, I’m so sorry, you have cancer in your ovaries and you also have it in your abdomen and I saw something on your liver.’ ”
“That. Bitch.” I say.
“Then the nurse said, ‘I’ll pray for you,’ and I thought, I don’t want you to pray for me, I want you to treat me. Later, when I got hooked up with my gyn-onc and went to the hospital for the full hysterectomy, you know, doctors are always trying to cover their asses, but he read some stuff off the chart out loud.” She hesitates, like she’s not sure she wants to continue. “This is so disgusting. I can’t even think about it,” she says. “One of the ovaries came out fine. The other was ‘compromised.’ That’s what it said. When she took it out, something happened, and now there are all these cancer cells swimming around in my blood. My new doctor said the cancer was probably not self-contained and already in my blood anyway, but I just picture this cancerous ovary, dripping back into my body.”
I picture it too, and I don’t know whether to be enraged or just really, really sad.
“I hope there’s a hell,” I say, “so that dismissive butcher of yours can go there.”
The next morning, I wander into Debbie’s bedroom looking for towels. Debbie is in her bathroom, inspecting her cranium. “Look at this,” she says. She has a few stubby gray hairs that have come in on her head since the last chemo ended. Before the next one starts. “Goddammit, now I’m gray. What if it all comes in like this when this is all over?” Debbie is not a touchy-feely person, but I cannot stop myself from reaching out and rubbing her nearly bare head. It’s a little prickly and pleasant, like when you let your legs go for a while. It’s the aftermath of a calamity, and the fresh canvas for a new one.
“That reminds me—want to meet Ellen?” she asks, and she leads me out of the bathroom toward the bookcase in her bedroom. There, on the top shelf, is a plain mannequin head with a brunette wig that looks like the doll hair version of Debbie’s old haircut.
“There she is,” she says. “I hate this bitch too.”
“Hi,” I say. “I’ve heard a lot about you, Ellen. I thought you’d be taller.” I turn to Deb. “Why did you name her Ellen?”
“It’s her name,” she says. “It was on the box. I got her at the Cancer Lady store.”
“You have a Cancer Lady store in town?” I say.
“Yeah,” she says. “I drive past it every day. It’s called Lovely You.”
“That,” I say, “is the most terrible thing I’ve ever heard.”
We need to get back home, and Deb and her family have their own Sunday engagements, so we pack up our toothbrushes and take a few last photographs. On the way out of town, we all go to the ball field to drop off the boys at Little League, and to say hello to Debbie’s parents too. I’ve known them as long as I’ve known Debbie. I still think of us as the kids and them as the grown-ups, even though I’m now the age they were when Deb and I first met. Deb’s mom, Clara, always still talks to me like I’m the teenager she feels she should take care of, the girl sleeping over at her house. I love her for that. We say our goodbyes while the boys play ball, and I’m totally fine un
til Clara hugs me—a big, fierce hug that I know is as much for Deb as it is for me. When she releases me from it, her eyes are red and moist.
“Well, that was fun and profoundly heavy,” says Jeff as I sit in the passenger side, looking on my camera at the photos from the weekend. There’s one that gets me. A picture from this morning of four smiling, silly children on a bright green lawn. Four children who a year ago had never considered the possibility of losing their mothers. Four children whose lives have been rewritten.
“Now you cheer up and dry your tears,” Jeff tells me. “Then next weekend we can celebrate my dead father’s birthday.”
June 2011
“How are you doing?” my dermatologist asks cautiously. It’s now my first summer after my ill-fated best summer ever. “I’ve been keeping in touch with your doctors at Sloan Kettering. Let me make sure I have all your information right. You just had surgery, no chemo, right?”
“So far, so good,” I say.
“That’s amazing,” Dr. Silver replies. “Because that was a very serious melanoma.”
I know the truth—that escaping chemo means almost nothing when it comes to melanoma. It doesn’t mean I was amazing. It means I was without other options. I look down at my crappy, crinkly pink ensemble. “The gowns are much nicer at Sloan Kettering,” I tell her. Then I add, “I’ve watched two people I love go through some serious cancer this year, and I’m really glad you’re my doctor.”
A Series of Catastrophes and Miracles Page 11