“They got one of my spots out, but the other one was too hard to reach,” I explain. “We’re probably going to do some treatment to make it go away. Like medicine.”
“Well, how much cancer is still in there?” she asks.
“Tiny bit,” I say, just like the doctors told me. I pick a round yellow circle off the brownie. It’s a little smaller than the space left by a hole puncher. “Like a sprinkle.” Just big enough to scare the hell out of me.
By Monday morning, the storm has blown through and left us intact. Although I’m still aching and exhausted, both the weather and my respiration are in promising enough shape to go at last up to the Cape.
But first, now that I’ve waited more than the required 72 hours since the surgery, I am dying to take off my hospital bandages and take a real shower. “Will you help me?” I ask Jeff as he’s tossing toiletries into a bag. Then I slowly peel off my oversize T-shirt and walk toward him in his mother’s sunlit guest room, my torso clad only in gauze and tape.
“Tell me if this hurts,” he asks, carefully pulling off the largest bandage, directly under my left breast. He looks scared but determined. “I don’t want to hurt you.” He then moves around to the other side, removing the one on my mid-back. Finally, he takes off the covering over the sorest, meanest wound, right at my left armpit. There are crimson gashes underneath all three sites, all deep and ragged, surrounded by stubborn globs of glue. This was all for a procedure considered minor, for the growth the docs said would be easy to get.
“You look like you’ve been stabbed,” Jeff says.
“You should see the other guy,” I tell him.
We have to get on the road in a few minutes, but he just stands there, wordlessly, looking at me. Then he starts to cry. “I am very mad about this,” he says.
I fold my right arm around him cautiously, as he sobs into my shoulder.
Then on this brilliant blue morning after the storm, my first Monday as a person with metastatic cancer, we all drive up to Wellfleet—Jeff, Mom, the kids, and me. I spend most of the ride passed out, my head smooshed into a pillow pressed against the window. We ride past entire towns that don’t have electricity, past rest stops still shut down. The day is fiercely bright and just a bit cool, like it sometimes is right after a big storm. Like it sometimes is at the close of summer.
It is a strangely great trip. It’s good being away for this recovery time. Much of it feels easy and comfortable, and the rest of it is like being on an entirely different planet. We eat corn on the cob and splash in Gull Pond and play miniature golf at Poit’s. I only go up to my waist in the water this time, though, to protect my surgical wounds, and my putt-putt game is far from my best. I spend many of my hours napping and reading and trying to resume physical activity while Jeff and Mom attend to the cooking and laundry and having coherent conversations. Sometimes I watch Jeff and the children as I sit weakly nearby, and think what an unexpected present our marital estrangement turned out to be. Jeff’s always been a good dad. I know from experience that he’s also a good single dad. He knows how to take care of those kids on his own. That’s a training that may well come in handy for him again soon.
In the moments I am not fending off an assload of pain, I feel like I’m floating outside of it all, observing myself blowing into the spirometer, putting together jigsaw puzzles with calm detachment, drifting to sleep at the drive-in before the opening credits of the latest installment of the Spy Kids franchise are even over. I chalk it up to a combination of coming off the anesthesia, the Percocet I am on, and the not-to-be-underestimated shock that I really do have more cancer. Every night, the sun goes down a few minutes earlier, and our sweatshirts come on a little sooner. It all feels achingly bittersweet. This must be how Dad felt, when he said Christmas was really over. In my photos from the trip, I have a faraway look in my eyes and a belly bloated from narcotic constipation.
On our penultimate night, we are finishing up our evening ice-cream cones outside of Mac’s when we hear the sound of some old-school disco emanating from the farthest end of the pier. It’s an informal dance party, with a DJ and grown-ups and kids and teenagers swaying in the crisp early September air to KC and the Sunshine Band and the Bee Gees. The girls run instinctively in the direction of the music. I am tired. I am hurting. It’s been a long day, and I am just about ready for a painkiller. “You go ahead,” I tell Jeff. “Mom and I will catch up.”
Summer is ending. My brief time as a cancer success story is over. But, hey, they’re playing the Village People, and if I’m on my way out, I’m going out like a leather man or a cowboy or an Indian chief. I can do this. I want to do this. I want to dance with my family. I break into a run and find my place between Jeff and the girls. It’s worth it to watch my daughters laugh under the moon near a harbor. Because maybe next summer they’ll be dancing without me. Though it hurts to lift my hands above my head, I know you cannot spell YMCA without the Y. And if my obituary reads, “Ridiculous woman dies overdoing it to seventies grooves,” that will be just fine with me.
CHAPTER 14
Stage 4
September 2011
By the time I go for my postsurgery checkup, fall has already fully descended. Lucy has started at her new middle school, and we are cobbling together a clumsy schedule for getting her all the way downtown in the morning and all the way back uptown in the afternoon. She’s settling in well so far, though her new routine is exhausting for all of us. Bea, meanwhile, is relishing her new status as a hot-shit second grader and the sole member of the family at her elementary school.
Though I am a bit of a basket case, Dr. Risk is chipper and breezy. “The melanoma that traveled to your lung likely did so before your operation last year, which would mean no new growth,” he says.
This is a massive relief, an assurance that in spite of the setback, everything is under control. “We’ll see how the drugs do, but in the meantime it looks like you’re healing well and getting back on track.”
Less than a month ago, the FDA approved another new melanoma drug—Genentech’s vemurafenib, also known as Zelboraf, for patients who possess a particular mutation in their BRAF gene. Roughly half of all people with melanomas have it. Mine does not, so I don’t qualify for the drug. Instead, Dr. Partridge is interested in putting me on a course of that much buzzed about new drug ipilimumab, the one the FDA approved last March. My new immunologist Dr. Wolchok played a leading role in one of the patient trials that led to its approval. I think that ipilimumab, known to doctors by the casual nickname ipi, sounds like a name you’d give a Teletubby, or the national dish of North Korea, or a vengeful Egyptian pharaoh.
“That all sounds good,” I say. “While we’re here, can you look at this thing on my back?” I hike up my gown, to what looks like a small bruise. It’s a distinct, purple line, slightly raised and tender to the touch. I’d noticed it only earlier this week, and surmised it was a mark from the surgery or getting moved around afterward.
He doesn’t look surprised or troubled. We both know he and Dr. Partridge have gone over every inch of me, and recently. He just says, “We’d better biopsy you, to be safe. Want to check everything out before the treatment.” My consultation report will note that a biopsy was sent to cytology “to confirm that this is not related to any underlying malignancy.” Dr. Risk sticks a needle in my back and a bandage over it, and I put my clothes back on and go outside and get a turkey burger and a beer—okay, two beers—for lunch. Less than 24 hours later, a nurse I’ve never met or spoken to before calls with the results.
“Ms. Williams, your biopsy came back malignant,” she says as crisply as if she were confirming an appointment. When you’ve got cancer, you get one delicate, sensitive phone call—the first one. The rest are pretty straightforward communications of the facts before the person on the other end of the line goes back to eating lunch.
I hang there on the other end of the line, dead silent.
“Are you there?” she says.
“Y
es,” I say, almost inaudibly. “So am I going to have another operation?”
“We’re sending the results to your doctors,” she tells me. “They’ll discuss with you the best options for a person at Stage 4.” Stage 4. Well, that’s the first time anybody’s said that to me. That’s a game changer, what with there being no Stage 5 and all. I suppose I should have figured it out when the cancer moved into my lungs, but I didn’t connect the dots. I didn’t want to. I still don’t reply.
“Where are you right now?” she asks.
“Home,” I say.
“Do you have someone you can call and talk to?”
“Yes,” I say. Then I hang up and get on with the business of flipping out. I can barely get the words out when I call Jeff. I open my mouth to speak, and deep, choking sobs come out instead. He knows what it means, and he says, “I’ll be right home.”
When I’ve pulled myself a little more together, I send an email to a select handful of friends. The subject head is “Cancer continues to be an asshole.”
Within minutes, the phone is ringing.
“I want you to know you’re a warrior,” Debbie declares when I pick up the phone. “So you go, girl.” Then she adds, “I’m just kidding. This sucks.” That’s the Debbie I know and love. “You feel however you want to feel,” she says, “because right now I’m going for rage and feeling really sorry for us.”
“That sounds perfect,” I tell her. “I’m going for shock and tons of fear.”
An hour later Jeff and I are sitting at the bar of the Indian Road Café. We don’t talk a lot; we just share the space in quiet defeat. What I am thinking, however, is how much I hate the word “survivor.” It’s a lie. It’s a crass fiction that other people impose on you to make themselves feel safe. Like we can all move on now and forget about the cancer. But you cannot forget about cancer. It huffs and it puffs and it blows through your life, and even if it doesn’t tear your house down today, it’s just going to try again tomorrow. Maybe I’m just a mite fatalistic right now, I think, as I stare into the ruby bottom of a glass of Malbec, because I am such a bad survivor. Because I have cancer. Again. Worse. A lot worse. Dammit, T cells, YOU HAD ONE JOB.
I feel like me. I look, except for all the new scars of the past year, like me. Dr. Risk had said there was likely no new growth, and new growth was blazing up in my body after all. How can I be this sick? How can it be this bad? Is it possible my respected doctor doesn’t know anything? My cancer is becoming more insistent. It’s going to be a race against time from here on in. So let’s start racing.
I am halfway through my second glass of wine when Jeff looks at his watch. “If we settle up now, I figure we have 15 minutes for life-affirming sex before we have to pick up the kids from school.”
I cast a sideways glance at him. And I knock back the rest of my glass and motion to the bartender.
When I go in to see Dr. Partridge, she’s considerably more relaxed than I am. “How are you?” she asks casually.
I’m devastated. I’m terrified I won’t see my children grow up. I’m dreading the possibility of winding up in a hospice, watching my insides drain into a carafe while I slip in and out of lucid consciousness. I can’t think straight because in just a few days, the lump has become more tender and sore, and when I shift in my sleep or put on my shirt, it feels like a giant zit that wants desperately to pop. I’m so freaked out I want to throw up.
“I’m surprised,” I say. “I didn’t think it would come raging back like this, not after a year.”
She gives me a sad, small shrug. “The odds were against you from the start,” she says. “We knew that, because of the size and the depth of the melanoma, because of the location, on your head.” But you told me I was cancer free, I think. I thought that meant I could stay that way.
When my friend Michele was a lifeguard, beachgoers used to ask her all the time, “Are there sharks in the ocean today?” She’d tell them, “There are sharks in the ocean every day.” The cancer has always been a threat. Today, it is swimming up to me. I guess the fact that I’ve lived this long without getting attacked again is supposed to be encouraging. It’s not.
“I’ve read about this ipilimumab,” I say. “I read that people on it lived a median of ten months. And that it worked long-term on only about 20 percent of the patients.”
“With your cancer,” she says, “that’s considered a home run,” which makes me glad she’s in the oncology business and not the birth control one. I can take the drug with the low chance of success, or the cancer with a considerably higher chance of killing me within a year. The math here is agonizingly simple.
“What about this new tumor on my back?” I ask.
“It just means you have a soft tissue metastasis. It’s a subcutaneous tumor.” Subcutaneous. Under the skin. “The new tumor doesn’t change how we’re proceeding with your treatment,” she continues, “but, no, I don’t like that you have a new melanoma. The rapidity of this makes me anxious, but it confirms our plan to treat you systemically. There’s no reason to think this won’t work. We’ll get you on the ipi, but there’s also a very promising trial Dr. Wolchok has been running I’d like to see you in.”
The trial, she explains, is the ipi in combination with another Bristol-Myers Squibb drug, so new and mysterious it doesn’t even have a name yet. It’s just known as MDX-1106. It works in a manner similar to ipi in that it’s another monoclonal antibody, one that targets a protein called programmed cell death 1, or PD-1. Like CTLA-4, PD-1 is a protein that hangs out on the surface of T cells. If another protein, called PD-L1, binds to it, it can thwart the T cells from doing their work. The hope is that the MDX-1106 can run interference, blocking the PD-L1 from getting to its destination and leaving the T cells to do their job.
The trial so far is still only in Phase 1. As the name implies, Phase 1 is the initial stage of a clinical trial for a treatment or combination of treatments. Because the researchers are usually trying the protocol on humans for the first time, they typically take only a small number of patients, who are divided into dose escalation groups to establish safety and efficacy. The earlier the cohort of the trial, the lower the dose usually is. This new trial has only a handful of people in it so far and has been acquiring them selectively. There’s one new spot currently earmarked for a patient coming in from the Midwest to do it. “That may fall through,” Dr. Partridge tells me, “and then you’d be next in line.” As Jedd Wolchok will later explain it to me in terms that are equal parts reassuring and chilling, “For a study like this, which was considered very high risk, the time in between patients was very long, because we did not want to make the mistake of exposing a lot of people at the same time to a toxic regimen,” he says. “We wanted to be sure that every single patient that we treated was reasonably safe before exposing another person to that treatment.”
Because I am now considerably worse off than I was a year ago when I met with Dr. Esposito, I have been ushered into the VIP room of cancer, a club whose qualifications are a Stage 3 or 4 diagnosis. The rewards are a broader range of clinical trial options. I am fortunate to be getting a fatal form of cancer right at a moment that I have the possibility of jumping into a trial like this.
With new drugs and new protocols, there are inevitable risks. In the clinical study report for ipilimumab, “Adverse events with an outcome of death were reported for 44 subjects, of which 14 were judged by the Investigator to be related to study drug.” That’s still a small number of people from what was a large and long study, and half of those 14 deaths were judged to be tied to “immune-related adverse events.” Still, there’s nothing like the words “bowel perforation and liver failure” to give one a case of the willies.
I am nonetheless intrigued at the idea of getting two cancer-fighting drugs instead of one, which certainly seems to better my odds exponentially. I also like that I could be monitored constantly and intensely, which is exactly the amount of attention I’d like right now. You can’t fall off the rada
r if you’re a subject of research.
But I am also concerned about why Dr. Partridge is talking to me about a clinical trial. A trial to me implies that she’s giving up. I feel like maybe she’s throwing in the towel on her failed patient, and preemptively donating my body to science.
“You’re very early Stage 4,” she says, “and believe me, Stage 4 isn’t what it used to be. I believe your long-term prognosis is excellent.” That’s just swell. Stage 4—it’s the new Stage 2! Except it’s not. Not really. It’s great that medical advancements are giving more people more time, but Stage 4 is not a place people generally come back from. It’s usually instead the next to last stop on the Cancer Train before Boot Hill, and everybody knows it. “You’re not in pain, you’re not symptomatic. Right?” Dr. Partridge asks. I’m not. I will hear these questions again many times in the weeks that immediately follow this conversation. I will learn that when you’re Stage 4, doctors ask you a lot if you’re in pain. There’s a kind of implied inevitability to the inquiry.
“If it’s not so horrible, then why aren’t you guys just cutting out the tumors in my lung and my back?” I say.
“The one in your lung is in a difficult spot. And we can take the one off your back,” she explains, “but the cancer would still be moving around your body. That’s why I recommend we try to get you into this trial. The only reason we’d remove a subdermal like that at Stage 4 is for the patient’s comfort anyway.” I’m sure she means it kindly, but that “comfort” line sounds palliative as hell.
“We’d just be putting out fires,” I say quietly. There’s not much point.
Dr. Partridge looks at me with a tender gleam in her eye. “It’s a simple procedure if you want the back tumor removed. You’ll be in and out in a half hour. Let’s do it. I think it’ll ease your mind.”
“There’s nothing we can do,” I say.
A Series of Catastrophes and Miracles Page 15