Debbie flags only a little. Jill and I are picking up paper cups and tidying up when she says, “My cancer is acting up again. I’m so tired. It’s frustrating.”
“Take a little snooze,” Jill says. “It’s okay, we’re all friends here. We’re just relaxing.”
“No,” Debbie says, and then she says it again more firmly. “No, I’m all right.”
When Jill and I return from putting things away in the kitchen, Debbie is nonetheless drowsing. But she rouses purposefully as soon as we attempt to creep quietly back into the room, refusing to miss a thing. When Mike, on the other hand, returns with Jeff from lunch, he parks beside Debbie on the couch and falls immediately, deeply asleep.
I have a photograph from the day I met Mike. I had gone over to Italy to meet up with Deb and to spend a few weeks tooling around Europe with her on our student rail cards. Debbie had been studying art in Rome, and Mike was a fellow student, getting his degree in architecture. The fall that Debbie had been abroad, she had written that she’d begun a romance with a new boy, and when I got to Italy, I was prepared to judge said new boy and his worthiness of my Debbie. By the end of my first lunch with him, I knew that he was a fittingly boisterous, uninhibited counterweight to my reserved and practical friend. What I liked most about him, however, was that he was so obviously crazy about her.
In the picture, they are on a low wall near the Vatican Museums. He is playfully kissing her neck, and she is laughing in the warm Italian light. Two kids in love. I look over at them now—she on her cushions and under her covers, he passed out next to her. Two kids in love.
“How’s the radiation been going?” I ask. I remember Rasputin, the tumor that was causing particular discomfort that the doctors had been trying to shrink.
“The radiation helped me a little with the pain,” she says. “It’s just about giving me more time. That’s what they told me, months ago. But I want to feel better. I want to get around.”
Life doesn’t follow a smooth, linear course. It goes forward and then back and then high and then very low. Debbie knows what is happening to her body. Yet she quite justifiably believes this doesn’t have to be a straight shot into worse and worse days. She believes there can be better ones, ones with less suffering. The hope of recovery is gone, but the hope of ease and comfort is still there. There’s hope for different things—but there’s hope nonetheless, and it’s powerful. It’s not an unconditional surrender, and it sure as hell isn’t losing a battle.
Her toes are stuffed into athletic socks and the rest of her feet are bare and grossly swollen, two inflated balloons punctuating her twiglike body. “Look at that,” Debbie says. “I’m sorry. That’s weird.”
“You don’t need to apologize,” Jeff says. He’s seen it before. He’s seen it on his father.
“That’s the edema,” she explains.
“That’s different from neuropathy, right?” I ask.
“Oh, I have neuropathy too,” she replies.
“I had edema after I gave birth to both of the girls,” I say, “and when I was marathon training. It’s cool how you can poke the puffy parts and not even feel it.”
Mike, who has been slowly rousing, leans over and prods two fingers into the top of Debbie’s foot, and then traces a semicircle right below the indentations. He looks up at Debbie with satisfaction and then back at that smile on her foot that is already fading.
As the day wanes into dusk, we all recognize that it’s our cue to leave and let Debbie get some rest. I stand up to go over to her to say goodbye. “Not yet,” she says. “Mike, help me up.”
Mike comes to her one side, and Michele takes the other to hoist her up to stand. She has neuropathy and edema and lost muscle function and a bag doing the work of her kidneys, and she weighs as much as my purse. And she is going to stand up and give Jeff, Jill, Michele, and me a hug. I put my arms around her tiny body and kiss her quickly. I’m afraid of breaking her, afraid of making her stand a moment longer than necessary and prolonging her obvious pain. But my friend and I get to hold each other and say goodbye. We get to do it on her terms. On our feet. “I love you,” I say. It is one of the most singularly transcendent moments of my life. Because it’s a moment shared with my Debbie. The least huggy person you’d imagine. The most generous and strong and loving.
Tonight, Jae is with Jill’s parents so that Jill and Michele can go out to dinner with Jeff and me, our first double date in quite possibly ever. Debbie had advocated for Mike to join us, but he refused. As Michele drives toward the Philly skyline, Jill reaches back from the front seat of the car and we silently hold hands. I can tell what she’s thinking, because I’m thinking it too. We’re thinking of the little house on Naudain Street where the three of us lived in college. We’re thinking of wedding days and babies and vacations and everything our trio has lived through together for so long. Of all the things yet to come.
We arrive at Le Virtù well ahead of our reservation. “Do you want to sit at the bar and have a drink,” Michele asks as we walk in, “or see if they can seat us early?”
“What?” Jill replies. “I don’t know. I’m in a bit of a dissociative fugue state right now.” Michele tenderly guides us to an empty table.
What follows is a glorious, shell-shocked, three-hour dinner of cured meats and grilled trout and spicy broccoli rabe and granita made of orange and basil. Our pal Cathy sits down and joins us, and we all catch up and spend a very welcome amount of the time simply savoring the fleeting pleasure of one another’s company.
“How was it, seeing Debbie?” Cathy asks us.
“It was a good day,” Jill replies. “It felt like us.”
September 2014
When I speak to Debbie lately, her voice is still strong, but her body is growing ever weaker. “I’m coming to terms with becoming increasingly incapacitated,” she says to me today. She’s lost most of the use of her arms and legs. Mike makes her eggs and protein drinks, and that’s about all she can handle. People keep trying to bring them food, but food is really not happening at their house anymore. “It’s not good,” she says. “We’re just trying to take it one day at a time.”
She’s on narcotics and she’s sleeping a lot. She’s bored. She tells me that they’re installing a lift so she can come up and down the stairs. “Like one of those old lady things from the commercials,” she explains. They got a wheelchair for her doctor visits, and a special bed. “When Mike got it,” she tells me, “they said the good thing is that you can return it when you don’t need it anymore. At first I thought, that’s nice. Then I realized what they meant.” She’s nervous about her next appointment with her oncologist, not so much because of what she thinks they can possibly tell her at this point, but because she doesn’t want to be admitted to the hospital again. I don’t blame her a bit.
She talks about how great Mike and the boys are being. She tells me how her friends came by the other day and massaged her feet, and how nice it felt. When I ask about her folks, she says, “They’re amazing. I can’t imagine what they’re going through.” She chokes up a little before she adds, “Can we talk about something else?” We talk for a long time about all kinds of things. We talk about how the kids are settling in for the new school year, and how strange it feels for her to not be teaching. We talk about British comedies, and the joy of Spaced. Then at the end I tell her I’ll come down to see her again in October, and she says that sounds good. I’ll be down in October, of that I’m sure. But I won’t see her.
It’s been almost four years now, four years of Debbie’s cancer. Four years of treatment and operations and emergencies and trying to come to terms with it all. It’s been six months since she gave us the “surgery not an option” news. Why then am I so racked with pain and grief when, tonight, we say goodbye? Why does it hurt so much? Why is the sting of loss so shockingly unrelenting?
Maybe it’s because no matter how much you think you’re prepared for it, a knife in your heart is still a knife in your heart. I feel latel
y like I’m watching her float away on an iceberg. She’s going farther and farther away, and there isn’t a damn thing I can do to help. I can still talk to her, but I cannot stop what’s happening to her, cannot keep her from getting smaller and smaller in the distance. I want her to not have to suffer anymore and I don’t want her to leave, and those things aren’t contradictions. I think she probably feels like that too. And I think that when people watch someone going through something like this and say, “I don’t know how they do it,” they don’t understand that the answer is “Because they didn’t have a choice.”
Debbie and I have a few more brief communications, mostly by text, about how she’s feeling and her wheelchair rides and what TV shows she needs to binge watch, until, on a Sunday afternoon, I get a call from Jill to say that Deb has gone back into the hospital with bleeding. She had to be carried out of her home in an ambulance. “They’re trying to get her released for home hospice,” Jill says. She and I then have a very practical conversation about how we should proceed with scheduling and travel plans, and we cry through most of it. Afterward, I listen to “Heroes” and cry some more when Bowie sings, “We could be us, just for one day.”
In an act of great mercy from the universe, Debbie is indeed sent home Sunday night so she can finish her journey where she belongs. It’s just about trying to make it as peaceful and as painless as possible now.
On Wednesday evening, I get a text from Mike telling me that if I want to write Debbie a note, he’ll read it aloud to her. I then compose the hardest email I’ve ever had to write.
In it I say, “I talked to Jill last night and we shared a lot of memories of Miami trips and Halloween parties and, of course, of wigs. You are the best fun, Debbie. You are the best, period. We are thinking of you and Mike and the boys, and of cheesesteaks, and sending you ridiculous amounts of love. I hope they’re giving you lots of delicious morphine. I hit the jackpot the day I walked into that house on Naudain Street, and I’ve been a winner ever since. Some people get crappy roommates. I got my best friends. I love you very much. I am always here for you and the dudes. We all are.” Then I close with a dick joke, because I want to end our relationship how we started it—with a total disregard for what’s mature or appropriate.
Three hours later, I am in the middle of a therapeutic game of Tetris when Jill calls to tell me that she’s gone. My friend Debbie died on a Wednesday night in September 2014. She was 48 years old. She died with her husband and sons nearby, telling her that they loved her and stroking her hair, with her friends sending in messages of support and strength. She died, fittingly, with the TV in the room turned on to Survivor.
I go into the bedroom, where Jeff is watching an old episode of The Bob Newhart Show with the headphones on, and stand quietly in the doorway. He looks up at me, and in that moment before I speak, a world of emotion passes between us. It’s all there. It’s them. It’s us. It’s a door closing. “It’s over,” I say, and I climb into the bed and he puts his arms around me. I never knew that crying yourself to sleep was a real thing until tonight.
The next morning, I tell the girls. I don’t say that she passed or that she’s not with us. I say that Debbie died, because there’s nothing wrong with saying that death is what it is. They are both spectacularly tender and gentle with me. “I’m sorry,” Bea says, and then she adds, “She’s not in pain anymore.”
I try to back off to give Debbie’s family some space, but in the afternoon Mike calls me. When I see his name on my phone, I pick up and instinctively say, “Hey, how are you?”
“Fine,” he replies dryly. “What’s new?” And I laugh. Right off the bat he tells me, with the directness of an old and true friend, that he doesn’t want me to send anything or do anything or make a big deal. “I just want to be as normal as possible right now,” he says, and I really respect that. I tell him that I’m grateful he gave me the chance to say goodbye, and he tells me the details of the memorial service.
“I loved taking care of her,” he says. He tells me how glad he was to share what he rightly calls a wonderful, colorful life with her. He tells me how just a week and a half ago, he took her out in the wheelchair and they’d gone for a walk through the neighborhood, and how “it was as close to before as we’d been.” He tells me how the ambulance had to take her back to the hospital where she was born, one last time, and how as they carried her down the stairs of their house she promised Tim, “I’m coming back,” and how glad they were when they let her go home. He tells me in detail every moment of the day she died and he tells me that though he’s living now with half a heart, he’s at peace. “You don’t have to cry,” he says. “It’s okay, don’t cry,” he says as I’m blubbering my eyes out.
“You really stepped up for her,” I say. “Thank you.”
“No, I didn’t,” he answers. “I just did what needed to be done.” He’s right; he didn’t step up. He didn’t have to. He was there all along.
After Mike and I get off the phone, I pore through my box of Debbie’s old letters and cards, because I’ve saved them all. I find the valentines signed “George Glass.” And I find the birthday card she sent me last year. It has a picture of Bigfoot and one word on the front: Believe. I’m trying, Debbie; I really am.
When someone you loved very much leaves, you don’t just lose that person. You lose that part of yourself that belonged to her. You lose all her memories of you, all her love for you. She takes that with her and you die a little bit too. That’s why you have to work so much harder then at keeping that love you shared alive. You have to look at a birthday card that says “Believe,” and you have to do it. You have to work so you can still feel her when she’s gone.
October 5, 2014
The memorial is profoundly sad but full of the deepest sweetness and heart. Hundreds of friends and family members line around the block to say goodbye, and when they play the music mix that Jill put together—the one that starts with “O-o-h Child”—I think, Okay, Debbie, you won. One of the best gifts of the whole experience is the conversation I have with another of Deb’s friends, who visited her at home right before the end. “That was the only time I ever heard her complain,” she tells me. “We were sitting together and she said, ‘You know what? This fucking sucks.’ ” It’s not the sort of thing that one hears in a eulogy, but it says it all as perfectly as the last message Debbie texted me—an emoji of a turd.
On the ride home, Jeff and I listen to Jill’s mix, the music of Bowie and Iggy Pop and Patti Smith. We talk about Deb and Dad and about us too.
“I keep thinking of Giuliani on 9/11,” Jeff replies. “When they asked him how many casualties there would be and he said, ‘More than any of us can bear.’ ”
“You know what?” I answer. “It fucking sucks.”
CHAPTER 26
Stage 5
January 2015
That I am still alive remains something of a strange novelty, even now. Not so long ago, Stage 4 was the final destination on the cancer train. People like me weren’t expected to get better. We weren’t even expected to hold steady. We were pretty much just assumed to get worse and die. Now look at us. The 110 percenters. The ones who go all the way to 11. The growing population of a new land: Stage 5. And just to be perfectly clear on this point in case somehow you missed it—I didn’t get better because I prayed correctly or because I’m strong. I got better because the science worked on me.
Talking with my researcher friend Steve is eye-opening with the distance of hindsight. “The attitude used to be, ‘Maybe we can fight cancer to a tie for a while and think of it as a long-term condition,’ ” he says. “But I don’t want patients coming in every few weeks for infusions. Now it’s like, fuck it; let’s just cure people. It’s an exciting time, from a medical standpoint. “I’ve got to tell you, we were all rooting for you, but shut my mouth, how well it turned out. This doesn’t just happen. The other thing—it wasn’t just you.”
Steve is right. My ipi/nivo combination has resulted in a
two-year survival rate for 79 percent of patients—and I am happy that other trials are showing similarly hopeful results. Still, it hits me like a brick when I read a story in the New York Times where my own doctor, Jedd Wolchok, is quoted: “It’s a completely different world for patients with metastatic melanoma to talk about the majority of patients being alive for years, rather than weeks or months.”
I am now three years cancer free, one year out of treatment. What happened to me is more than just an isolated breakthrough. It was the promise of a different way of treating cancer altogether. My melanoma drug trial was so successful that in May 2013, it leaped from Phase 1 directly to Phase 3. It went from a group that started out with 53 people to one that enrolled 900 patients, all over the world, within a year.
The expected years and years of testing—and painful trial and error—that it once took to get a promising drug to patients are not necessarily the norm anymore. Dr. Wolchok says, “Our expectations are that about half the time, this treatment is going to help melanoma patients in a dramatic way—meaning significant reduction in the amount of tumor on the scans or a physical exam by the first time you look. Five years ago, we were barely used to that happening at all. Now we’re actually seeing this in many Phase 1 patients. Regulatory authorities are having to take seriously large data sets from Phase 1 trials that have very compelling signals in them—and the reason is that the agents we’re bringing to clinical trials have a high likelihood of working. In the past we would have some very sound scientific evidence, but we still were dealing with relatively ineffective medicines. Now we know to apply the targeted therapies only in patients who have the profile that makes it likely for success. The spectrum from Phase 1, Phase 2, and Phase 3 is becoming much more blurry.”
A Series of Catastrophes and Miracles Page 25