I’ve lived a relatively risk-averse life, but sometimes, I have waves of panic, an almost religious fear that if I had just worn more sunscreen or not eaten sugar or been a more positive person, I wouldn’t have found myself in this jam.
Even though I know, intellectually, my cancer didn’t necessarily care how virtuously I’ve lived, I cannot shake this strange sense of shame associated with my disease. I have to fight a sense of failure, like being alabaster skinned and getting sunburns as a child was my fault, or that my cancer was a manifestation of my unresolved emotional issues. I have to work at not blaming myself for what I’ve been through. It’s not always easy when the first thing people inevitably ask when you tell them you’ve had melanoma is “Did you tan?” No, I didn’t. But would I not deserve my clinical trial, my miraculous healing, if I had? I’ve read articles that describe melanoma as a “lifestyle choice” disease. A few nights ago, at a boring party full of low-tier media types like myself to celebrate the release of, I don’t know, something that meant free mini-quiches for showing up, I ran into a woo-woo, New Agey acquaintance who, in a very misguided attempt at party small talk, asked me, “Don’t you think it’s telling that you got cancer on your head? I mean, you are a person who spends a lot of time in her thoughts, right?”
Here’s a science lesson: UV rays from the sun activate the melanin in the body. When a person is standing or sitting upright out of doors, the first place the sun’s rays hit is the top of the head. Those of northern European ancestry and pale complexion are more vulnerable to the effects. But sure, I thought my way into that.
I cannot imagine how much harder it must be for people with conditions even more closely associated with behavior, the stigma they have to deal with for being unfortunate enough to get lung cancer or emphysema or HIV. I have had three family members die of smoking-related diseases, and I can attest that they were human beings who didn’t deserve to suffer either. And I have learned that all the weirdness cancer brings isn’t reserved just for the person who had it.
“I don’t understand,” Jeff says as the rush hour A train thunders toward Columbus Circle. “Everything is great. You had your latest scans two days ago and they were totally clear. Your treatment has been going fine. I know you’re okay, but,” and he looks so dejected and beaten down my heart cracks, “I’m so edgy and emotional lately. I feel really scared and sad all the time.” Dad has been dead over a year, and yet just this week Jeff texted me that he’d found himself unexpectedly sobbing about his father at work. He had told me, “A locked office door is a good thing today.”
“Well, you still are on the way to watch me get about two dozen vials of blood taken out of my body and a non–FDA-approved drug combination put into it,” I say, “so let’s not underestimate that. You do know why it’s called post-traumatic stress, right? It’s because it happens after the trauma.”
There’s this inane prevailing notion that grief only takes a year and then you move on, like it’s something you can set a timer to. There’s this idea that getting a clear diagnosis is a happy ending. Yes, grief does subside, and a complete response is better than dying of cancer, but it’s not quite that simple. There is a whole lot of emotional walloping along the way, and it is real and largely unavoidable and emotionally exhausting.
I am now in my seersucker robe, and Jeff is this time sitting with me. Before long, Karen comes into the exam room with her checklist of side effects to ask how I’m doing.
“Uhhh, great?” I reply, hesitantly. “You guys tell me I’m doing great. How are the other people in the trial doing?”
“We’re still pleased with the results,” she answers. “I guess you were meant to be here.”
I know she means I was lucky—and I was. But I’ve spent so much time trying to make sense of all of this, to find the meaning and the grace, that I have to ask myself, Who the hell is meant to get cancer? And who is meant to be saved from it? Was Dad meant to? Was Debbie? Was Cassandra meant to die before her sons could even rack up a childhood’s worth of memories of her? I cannot find meaning or sense in any of it, and I never, ever will. I don’t know why I was brought here, or what in this world is meant to be. I only know that here I am, one of an elite group that science will someday note the drugs worked on.
Jeff and I go into my regular suite with its reclining chair and its green, leafy potted plants and its view of the office building and its bored-looking workers right across the street. I settle into my chair and instinctively roll up my sleeve as the nurse comes in with the blood pressure monitor and the IV tower. It’s all still relatively unknown territory for Jeff. Welcome to my world, dear. When it’s all over, he takes me out to P. J. Clarke’s for a burger dinner, and he tells me, “Thank you for not dying.” Believe me, it was my pleasure.
A few days later, while the girls are at their day camp, I head to the Indian Road Café in the late afternoon to work on a freelance project. I go for the coffee and the all-too-welcome change of scenery from the four walls of our apartment. Yet when I walk in, I happily accept immediately I’m not going to get a lot accomplished today. Because Leo is back.
Leo is the last guy you’d have figured to wind up sick. For starters, he’s the unofficial mayor of the neighborhood. On Saturdays, you can find him at the farmers market on Isham Street, selling his art and his T-shirts. On weekday mornings he’s in Inwood Park, running or meditating on a bench. In the afternoons he’s working and socializing here at the café. He’s a vegan. He’s got a bike club. His online bio is “friend to all.” He was diagnosed with acute myeloid leukemia last month.
The news of Leo’s illness immediately shook our little community like an earthquake. That man is as much of a fixture in the landscape here as graffiti murals and the giant plastic chicken on the roof of the Fine Fare—and nothing bad could ever happen to any of them, right? He’s always had the appearance of being strong and healthy—the guy you could pick out in the crowd by the sound of his laugh and the gaggle of friends surrounding him. The only real strike against him—and it’s a doozy—is that he doesn’t have insurance. Maybe if he did, he’d have gone to see a doctor sooner. Then again, maybe it wouldn’t have changed the diagnosis at all. All that matters right now is that so cherished in our neighborhood is Leo that his crowdfunding effort to pay his hospital bills quickly netted over $25,000. If you get sick and you’re not fortunate enough to have insurance, I suggest as a Plan B to be very, very well loved. If Leo had needed a treatment like Yervoy—which costs a fortune if you’re not in a Bristol-Myers Squibb drug-combination clinical trial like me—I don’t know how he could have done it. This is a fact both outrageous and cruel.
Yet here Leo is now, at his usual perch—back home after several weeks in the hospital undergoing aggressive chemo, a memorable place to have passed his 40th birthday, to be sure. He looks great—a lot better than he was earlier this year when the disease was taking hold. He’s still clearly weakened, though, and he looks melancholy too. He hugs me enthusiastically when I walk in.
“Welcome back,” I say. “Inwood missed you. It must be good to be back.”
He smiles a little ruefully.
“Yeah,” he says. “But you know how it is. For six weeks all I wanted to do was come home. Then on my first night back, I woke up in the middle of the night in a panic, reaching for the rails on a hospital bed and wondering where they were. My own bed doesn’t feel like my bed anymore.” He starts to sob. “I can’t even explain it to most people. Everything is different, and I’m just trying to stay alive for my daughter.”
“I know,” I say as I put my arms around him. “I know.” We stay like that for what feels like a long time, wordless and sad. People talk about getting “back to normal.” You never go back to normal. The person you were before is gone. You just go on in a new place.
I will see Leo many more times over the days and weeks that follow. I will see him sitting in the park and reading at the café. I will follow his Instagram and see his photos of his
raw, vegan treats and his triumphant face after his runs and bike rides, and then the images from his chemo treatments after his relapse. In one of them he writes, “When one no longer fears death and instead makes it a friend, one can truly begin living.” I will see him at the farmers market, right after Christmas. “My doctor says my white count is too low,” he’ll say. “He tells me I only have a few weeks, and that I have to do another round of chemo. I tell him, I’m not hearing that.” He will look gorgeous, that last time I see him, when I wish him a happy new year. He will live the first two weeks of it before he dies at his home, surrounded by loved ones. And I will feel him at my back, even now, on my morning runs through our park, pushing me forward.
CHAPTER 21
The Veteran
November 18, 2012
It’s not the running that’s the hardest part. It’s how you feel when you stop.
I’m doing remarkably well. My doctors are currently writing about my trial to publish their results in the New England Journal of Medicine this coming spring—just in time to present them at the American Society of Clinical Oncology’s annual conference in May. Dr. Wolchok tells me that our trial—and in particular, results like mine—have created a stir in the medical community. I, meanwhile, have spent the past months diligently teaching my feet the route of the New York City Marathon, with measured runs through all five boroughs. I had pictured crossing a finish line—a real, physical one—so differently. I thought my big moment would have been in my own city. I thought my family would be there to hug me at the end. But Hurricane Sandy changed the plan. Our Gilda’s Club team wound up instead spending marathon day pitching in on Staten Island.
And then this morning, less than three weeks after the storm, I ran the Philadelphia Marathon instead. The experience was beautiful and bittersweet, with throngs of well-wishers cheering on runners like me, who charged from the Art Museum to Fairmount Park and into Manayunk and back, in shirts declaring we were refugees from the New York City Marathon that didn’t happen. I felt loved every step of the way. But work and school meant that Jeff and the kids had to stay back at home. I have luckily snagged a place to crash, staying at the house of an out-of-town friend. But I’m in relative solitude here.
Debbie had hoped to be encouraging me from the sidelines. Instead, today she’s too sick to attend. She spent the past year on Abraxane, a “good year,” as she calls it. We’d seen each other most recently just a few months ago, during a relaxed family weekend together in Philly. Just a short time ago, her CA 125 numbers had been great. Under 35 is normal. She was at 16.
“I was going to be done, just one more scan,” she’d said when I got the call.
As I stand in the shower feeling blisters blooming around my toes, some of which no longer have nails on them, I think how different everything is now from when I signed up with the Gilda’s Club team just six months ago in May. This marathon—I’d thought I had to prove something to myself. Instead, it wound up being a gesture of devotion for a friend.
A few weeks ago they found a 2.5-centimeter mass on Deb’s hysterectomy site. She’s started a new treatment in a promising clinical trial of her own—she’s getting a combination of alisertib and paclitaxel. And while I was devouring a pretzel at the Reading Terminal Market yesterday, she had called to say she couldn’t come to see the race. She had calmly explained that she was in agony because the new drugs were making her mouth unbearably sore, and none of her doctors were around on the weekend. She was so worn out from pain she could barely speak. But she called anyway because, that’s Debbie.
So this morning I’d gotten up at four and gone down to the art museum. I’d run 26.2 miles around our old haunts, past bars she and Jill and I used to stumble out of when we were roommates together at Temple that are now Starbucks, through Fairmount Park and up into Manayunk and back to Logan Circle. As I crossed the finish line, Kate Bush’s “Running Up That Hill” was playing. I got a shiny finisher’s medal placed around my neck, and tomorrow I will put it in the mail for Debbie. It will not cure her cancer. It will not fix anything. It will only tell her that I love her.
CHAPTER 22
Truly Remarkable
May 17, 2013
I have just made the greatest published appearance of my life. I’ve been a writer for more than 20 years. I’ve had my byline in a lot of places, but nothing compares in excitement with this venue—and it never mentions my name. I’m just a dot. I’m just a line. A year and a half into my trial, I’m a marker of something incredible.
This week, Dr. Wolchok and my immunology team have presented the results of our trial at the American Society of Clinical Oncology’s annual meeting, in advance of publishing them in the New England Journal of Medicine. Suddenly, my little trial is big news. In a statement, American Society of Clinical Oncology president Dr. Sandra Swain says of the findings, “This is truly remarkable. This kind of response has not been seen with immunotherapy before.” I write about it for Salon; I appear on NBC Nightly News to talk about my experience. I now learn my second drug has a cute new name that I’m unsure how to pronounce: nivolumab. It’s a surreal time.
I’m not usually one to snuggle up with a copy of the New England Journal of Medicine, but in this case, it makes for a mighty satisfying read. “A total of 16 patients had tumor reduction of 80 percent or more at 12 weeks, including 5 with a complete response.” Complete response, that’s me. My favorite bit is the part that reads, “Rapid and deep responses occurred in a substantial proportion of treated patients … including some patients who had had extensive and bulky tumors. Particularly striking was the observation that across the concurrent-regimen cohorts, 31 percent of the patients with a response that could be evaluated had tumor regression of 80 percent or more by week 12.” I am also psyched to see that “No treatment-related deaths were reported.” And, confirming that two is often better than one, the report notes the “combined blockade of PD-1 and CTLA-4 achieved more pronounced antitumor activity than blockade of either pathway alone.”
When I next go back to Memorial for another round of blood work in June, a new nurse tells me, “I’ve read about your trial. That’s so wonderful.” Then she adds, clearly quite moved, “You know, in Phase 1s, we usually expect a lot of losses.”
I do know, sort of. I know in the abstract way that I couldn’t really get my head around when I was in the thick of it. I know it from the casual way one of the residents on my trial now mentions to me how, “In Phase 1, it’s mostly just testing for safety.” Of course, the doctors and the researchers and the pharmaceutical companies hope that it’ll work and that we’ll live. It’s just that, historically, it hasn’t always worked out so successfully. Not in the early trials anyway.
I also know that, even with a success that is making headlines, not everyone in my trial has had reason to celebrate. The report makes that part clear too. There have been days when my team has come into my exam room, jubilant at how well I’m doing. But I know they have walked into very different rooms too, with different news, and that there have been very different outcomes for others. I don’t believe that anybody ever loses a battle when it comes to cancer, but not everybody responds to treatment either. And I have insane amounts of respect for what it takes to steer people through all of it, in all its variations.
When I ask her how she deals with working in a field that’s so rife with loss, Karen doesn’t offer clinical reserve. Instead she admits, frankly, “It’s devastating for us. What we try to do is give all the patients some level of hope, and becoming that hope is what I do. I try to mirror that hope for them, and keep myself focused on the fact that we’re saving a lot of lives. Unfortunately we’re not going to save all of them. We have to just be strong for them, be confident for them, no matter which situation we’re faced with. But it’s very hard, because these patients do become very close to us, and it’s devastating when it doesn’t go right.”
I understand that devastation, in no small part because of Debbie. She was kicked out
of her clinical trial this winter. Right around Valentine’s Day, she went in for her treatment, and they instead dropped the bombshell that it wasn’t working and that they were moving her to a different protocol. They told her she had a tumor that had grown to 3.5 centimeters, that they had to come up with a whole new treatment plan for her.
By the time of her latest surgery, a few weeks ago, the tumor had grown to five centimeters. Her cancer is ferocious and tenacious. She told me beforehand that they were taking out six inches of her bowels, and then, as she put it, “They’re putting a 29-millimeter ring in me, so I can only poop as big as the ring, I guess. I looked at it and said, ‘Do you have a bigger one?’ ”
The entire course of our relationship, we’ve been on similar paths. Now our paths are diverging drastically, and in the worst possible way.
CHAPTER 23
Where Do We Go From Here?
A Series of Catastrophes and Miracles Page 22