After we’re all dressed, we go out to breakfast at a local diner. I may have Stage 4 cancer, but with a treatment plan in place, I am beginning to feel better. The eight of us sit together laughing and talking over each other and ruthlessly grabbing food off each other’s plates, and buttered raisin bread and I even rekindle our lifelong romance. But as Debbie’s family and mine walk toward the cars to head back to our respective homes and the prospect of my Monday morning return to Sloan Kettering hits, suddenly so does the fear and the anger at the colossal number cancer has been doing on Debbie and me for the past year. The bandanna on Debbie’s head, the way she’s still in treatment. The relief of yesterday gives way to the inevitable fear and anger. And anxiety. Our families walk to the cars, and we promise to see each other again as soon as possible. I wonder if we will, though. See each other again, I mean. Cancer has a way of changing your relationship with the future and your plans for it. I watch Debbie get into her car as we all pile into our rental. I scoot the kids into the backseat, and then I climb into the passenger side. I don’t even get the door closed before I burst into tears.
The tears are so sudden and excessive that Jeff and the kids are alarmed. “Are you okay?” Jeff says. “Do you need to wait here awhile?”
“Just go,” I reply. “Drive. Please.”
We cruise right behind Debbie for a few blocks, until we come to the intersection where we have to turn and she must keep going straight on. She pulls up right next to us on her left-hand side. There are tears and mascara sliding down my face, but when she honks her horn, I attempt a valiant smile and wave through the car window. Obviously, she can tell how hysterical I am right now; she’s being polite as she gamely waves back. She’ll later tell me that no, in fact she couldn’t tell, because she was too busy crying herself. “I cried the whole way home,” she’ll say, a feat I find impossible to envision because I have never, in all the time I’ve known her, seen her even a tiny bit verklempt. “I thought for sure I’d never see you again.” I tell her that I had thought that too.
As soon as we come home, down the rabbit hole I go. While my aggressive cancer cells continue to do their work in my body, I embark on a punishing back-and-forth regimen at Sloan Kettering. Urine tests. X-rays. EKGs. An insane number of blood tests that fill vial after vial for collection. I do it all while working and parenting and trying to hold together the rest of my life. And I don’t for a minute take it for granted that both my job and my family are incredibly accommodating of my inconvenient, crummy health situation. I know not everyone gets that level of support.
There are also consultations with Dr. Wolchok and the trial team. I meet my no-nonsense trial nurse Karen and two of my team fellows: a whip-smart young doctor named Evelyn, and a young man with pearly teeth and good hair whom I will call Dr. Pete to his face and Dr. Handsome to my friends. I am not convinced he is yet mature enough to rent a car, let alone treat my melanoma.
“How old are you?” I ask him bluntly.
“I’m 30,” he replies.
“That’s a nice age,” I say. “You know what happens in your 40s? You get divorced, you get cancer, and your parents die.”
“I’ll … keep that in mind,” he replies politely.
In the blur of my days at Sloan Kettering, I even, at last, meet the chair of the immunology program, the famous Dr. James Allison. It is not a momentous event when I do. He just happens to be strolling by the front desk while I’m talking to Dr. Wolchok. “This is somebody you need to meet,” Dr. Wolchok says, but he doesn’t mean I should meet Allison. He means Allison should meet me. “This is one of our new candidates for the combo trial,” he says, smiling toward me. It’s extremely cordial, but I cannot help feeling that my dire diagnosis is there in the subtext.
I am not a particularly superstitious type, but knowing that the head of this medical team is an Allison provides me a comforting sense of symmetry. Exactly one year before my diagnosis, a dearly loved friend died suddenly and much too young. Her name was Allison. It feels right to have this new and very different Allison in my life. This Allison has white hair and small, neat glasses and a Texas accent. He’s probably the smartest human being I will ever come face-to-face with—and when I meet him my first impression is that I like him because he looks like a troublemaker. “Pleased to meet you,” he says in his honeyed southern drawl, and then he saunters off again. There’s something about the guy that seems a little wild and dangerous and makes me feel safe. He’s the feisty Mick to Dr. Wolchok’s cool Keith.
Not everybody here has that effect. For another one of my appointments, Dr. Wolchok is out of town at a conference, so I am sent for the day to a different doctor. Dr. Fields is an elegant Dr. Oz type who exudes TV star confidence and comes with his own entourage.
“I’ve brought some of our residents here today to observe, if that’s all right with you,” he says, pointing to a group of five very young-looking strangers.
I nod my assent. I’m part of research already. It would be silly not to acknowledge that I’m here for the doctors to learn from.
Dr. Fields tells the residents, in dry terms, about the cancer in my lung and on my back, recounting the Case of the Metastatic Melanoma. Then, pointing at me, he tells the group, “Let’s get a look at the tumor.” Apparently I am the tumor. I obligingly lift up my seersucker. “Ah yes,” he says with a nod as his posse flutters around me. “So we have a 2.5-by-1-centimeter unresectable tumor on the right chest wall.” He touches it and it’s sore.
“Dr. Partridge told me they can remove it if I want,” I pipe up.
He looks genuinely startled, and I cannot tell if it’s over this new development or the fact that the tumor is speaking.
“Oh, no,” he says firmly. “You have to let us know what you’re planning on doing, because we need that tumor for our study. It’s your only visible site of disease, so that makes it a useful marker for us to measure our progress. If you remove it, you can’t be in the trial. But,” he adds condescendingly, “it’s your decision.”
There’s no windup. No “Let’s talk this over.” Just an unpleasant person who seems not to give any damns that I am a human facing a serious disease. I’m not really here to meet your “needs,” I think, but I say, “I thought I could do both the procedure on my back and still be in the trial, because of the cancer in my lung. Dr. Partridge never said it would disqualify me. She told me we could do an in-office procedure; she said it to me while she was working on getting me into this trial.”
“No,” he says again. “We need both the tumor on your lung and the one on your flank.” Like I’m a horse.
I’ll still have to decide whether I want the surgery, but I know for sure one thing I definitely don’t want. I am not Tina the Talking Tumor, and I don’t give a rat’s ass about what Dr. Fields wants in his glorious quest for medical advancement. I’m happy to help the cause of science, but not to the exclusion of what’s best for me first.
I have already come so far in the process, but they cannot make me do the trial. “Well, I’ll think about what you’ve said,” I tell him, “and I’ll get back to Dr. Wolchok with my decisions.”
He nods. “You can get dressed now,” he says to the door as he walks toward it, his flock trailing behind him. I put on my clothes, and on my way out, I stop by the front desk with a message. “I won’t be seeing Dr. Fields again,” I say to Cal, the office manager. “I don’t want to talk to him and I don’t want him to touch me. So please make a note of it.” I never see him again. A year later I will read a newspaper interview with him and decide that he sounds like a brilliant and dedicated researcher—and a total cocky douche.
For the grand finale of my pretrial testing, I do an MRI over at the main hospital. I am put into a tube, get injected with a solution that immediately makes me want to vomit, and have images of my brain taken while I spend the next half hour listening to a clanging din. Then they send me downstairs for my CT scan. I drink my jug of contrast dye, change into a robe, get hooked
up to an IV, and wait in a crowded hallway with the other patients. I sit there next to a little girl who is whining to her mother. The girl cannot be older than four. She is as tiny and breakable looking as a baby bird. She is bald and shivering under a blanket. I glance over at her and her mother stoically fussing with her covers.
“I want to go home,” she pouts. “You said we weren’t going to be here this long. I’m cold I’m cold I’m cold!”
“I’m sorry,” her mother says. “We’ll be done soon.”
Across from us, a hollow-cheeked, dark-haired young woman is lying down on a stretcher, staring blankly into the middle distance and breathing laboriously. She seems entirely unaware of the other woman, the one who looks like a healthy version of her, holding her hand. I suppose they’re sisters. God, I hate this. I hate that we’re here, on a cloudless October morning, with saline in our veins and contrast dye in our stomachs. But we’re here to get better, I tell myself as the tears begin to sting my eyes yet again. We’re here to heal. I have to allow for the possibility that this child and that young woman are going to be okay. For their sake, and the sake of the ones who love them.
When it’s all over, no one tells me officially that I’m accepted into the trial. There is no congratulatory letter that arrives, preferably via an owl. There is no lottery winning–like ebullience in the message. They just call me in for another screening consultation and mention that the MRI was clear. “Nothing in your brain but your brain,” the technician says.
I have aced the mysterious vetting process, proving myself sick enough yet fit enough, while also meeting other, more ephemeral qualifications. The first thing I had going for me was just a willingness to show up. Dr. Pete tells me later, “Lots of people hear the words ‘clinical trial’ and it freaks them out.” I know, because I was one of them.
He continues, “It’s about patients being interested, understanding what it is that they’re participating in, and being motivated to follow the trial protocol. We need patients who will take the pills as prescribed or come to their appointments as scheduled. If a patient wants more flexibility in their care, that’s more than reasonable, but maybe Phase 1 trials are not right for them.” And when I ask him if age is a factor, he says not really. “You can be 40 years old and you have something that may make you not a good candidate, or be a patient who’s 75 who’s an excellent candidate, no problem. Functional age is just as important as a numeric one.”
For the next step before I can start getting some drugs in my cancer-riddled body, I meet with a tiny, dark-eyed nurse who reminds me of Wednesday Addams in a lab coat. She hands me a 27-page document explaining my treatment plan and every possible side effect they’ve considered. Of course, because this drug combination is virtually untried on humans, there may be others that surprise us. “It’s all pretty standard. This is just in case, you know, your head falls off or something, ha ha,” she says, but I don’t laugh. Among the “likely” side effects are fever, low or high blood pressure, sweating, rash, itchiness, shakes/chills, fatigue, decreased appetite, and diarrhea, which apparently is so very likely it’s printed in bold. Other “less likely” effects include vomiting, dizziness, and shortness of breath. Under “rare but serious” possible side effects are autoimmune disorders, lung inflammation, acute kidney injury or failure, multiple organ failure, and meningitis. I am also warned I cannot take herbal supplements or do acupuncture or get a flu shot. Maybe my head will fall off or something.
I fill out all the forms, including the one that says, “You will be asked to take part in this study for life.” I fill out the one that asks, “Are you the only person responsible for minor children and unable to care for them?” I am not the only person responsible for my children, and I can care for them just fine. Yet the implication of the question, the issue of potentially leaving one’s offspring, hits me like a brick. I sign off on everything, asserting that I understand the risks, that I consent to have my blood and tissue studied, that I am entering into what in the very best possible case scenario is a very long relationship. As I leave, I am handed a printout of a schedule. It has me down for two full years of active treatment, and follow-up appointments with dates years into the future. I wonder how many of them I will live to keep. “You’ll be with us forever,” the nurse says with ominous cheerfulness. You can check out any time you like, but you can never leave.
It’s becoming very real to me that this will not be easy, even though being in the first cohort means I am to receive the lowest dosage combination. I had wanted to be closely watched, and, by God, I will be scrutinized beyond my wildest dreams. The hope is that the dose is high enough to be effective but low enough to not have a battery of other consequences.
Here’s another thought: Even if this bombs out and I’m dead in a few months, maybe my messed-up, diseased body can be of use to somebody else. Somebody who’s getting a phone call today from a doctor who’s telling her, “I’m sorry.” I am a patient, but I really am a medical experiment too. I’m like one of Nils’s little mice—as Dr. Fields’s behavior rather tactlessly reminded me. But I like the idea of being helpful, even if I’ll never really know exactly how. As Dr. Pete tells me later, as we sit in the afternoon sun in a conference room at Sloan Kettering, “We’re doing so many studies now on the melanoma samples we’ve collected from patients, and looking at different mutations in them. That is a big part of the scientific literature.” I am not Mary Elizabeth anymore; I’m not even Mary. I’m Trial Patient Number 1626. I’m your bitch now, science.
I’m still hopeful for a brighter fate than being just a lesson from an experiment, though. Just as Dr. Partridge once told me, it is indeed a terrific time in melanoma. Dr. Wolchok will later explain to me, “I spent the first decade of my career dealing with medicines that had a vanishingly small chance of helping someone—and when they did help, they didn’t help for a long period of time. The world changed in 2010, because of ipilimumab and also because of the BRAF inhibitors [like vemurafenib]: two different approaches to treating melanoma, both of which were rapidly approved by the FDA because both were demonstrated to improve overall survival. This had never been shown before in medicine to treat metastatic melanoma. Melanoma is teaching us a lot about how all of the things we believe we know about cancer may be untrue.” In the United States in 2011, roughly 70,000 new patients will be diagnosed with melanoma. More than 9,000 patients will die of it. That’s one person every hour. I have been accepted into the first cohort of this Phase 1 trial. There will eventually be 53 people in my arm of the trial—but right now, there are fewer than a dozen enrolled. They will range in age from their early 20s into their 80s. Because I am considered relatively young and healthy, because I live where I do and have the cancer center I have, I now get the chance to be one of them. So suck on those odds, cancer.
CHAPTER 17
Hotel California
October 13, 2011
I’m in the waiting room in my FUCK CANCER shirt and magical butt-flattering Lululemon Groove pants, which is as close to being in my pajamas in public as I feel I can pull off. Today is the first day I’m finally getting these mysterious drugs I’ve been hearing so much about, and I want to be as comfortable as possible for it.
For the initial week, I will go to Sloan Kettering four out of five days so they can give me the treatment—an infusion of one drug, and then the other—and monitor me and take my vitals and my blood. If all goes well, I will then go back for monitoring, blood work, and/or treatment at least once a week, every week, from now until the springtime, so they can make sure I’m not losing weight or my liver is not staging a rebellion.
I’m not the only rookie here. Directly across from my chair is a dark-haired, blue-eyed young man who isn’t even trying to conceal his secret identity. He’s wearing a dark T-shirt with the numbers 007 on it. “Nice shirt,” I say.
“You too,” he replies. His is name is Frank. He’s 24, and this is his third recurrence. He’s already done chemo and interferon and th
e ipi alone, and nothing stuck. He’s brought in his laptop today, and confides that he’s told his office he’s taking a work-from-home day because he’s afraid of the career consequences if they find out he’s sick. “I don’t talk about it with the people at my job,” he says. “I don’t talk about it much with my friends either. They don’t really get it.” Everybody I know has an intimate relationship with cancer. I cannot imagine how lonely it must be for someone young like Frank. Fuck cancer, indeed, in so many ways.
For my first stop, I meet with Dr. Wolchok and Nurse Karen, and then go back to the treatment area and am introduced to my new team of nurses: Susan, a Bay Area native who’s supposed to be preparing for retirement but says she loves the work too much to stop; Naomi, a divorced mother of two young children; and Christie, a fresh-faced recent nursing school grad from the suburbs who tells me, “It’s the craziest day. I just ran into a guy I went to high school with. It’s his first treatment day too.” I’ll bet it’s crazier for Frank.
I am disheartened when I am told I cannot go out for lunch but perk up when they hand me a deli menu and tell me I can order anything on it. On the one hand, I have forfeited my emancipation today, cooped up in a chemo suite. On the other hand, my appetite has been coming back, and there’s free soup. I can also have all the Shasta I want from the kitchen. It’s a mite disingenuous, however, that they call my humble cell a “suite,” like Kanye is going to show up with a bottle of Dom and invite me to hang out on a white leather couch. Yet for a location whose defining characteristic is the giant IV tower, it’s all right. There’s a reclining chair and a TV and a window lined with potted plants. I have a sliding door that I can close to tune out the noise from the nurses’ station. I have brought my laptop and there’s free Wi-Fi, so while all the other chumps who don’t have cancer are stuck working today, I have American Horror Story on Hulu. It’s quite a racket I have going on here.
A Series of Catastrophes and Miracles Page 18
