August 2013
It is an oppressively hot afternoon. Mike and Deb are in town for a quick overnight getaway while their kids are away with friends, and I am free because I had a morning of blood work and scans at Sloan Kettering. Happy third cancer diagnosis birthday to me.
We have travel tales to exchange this afternoon. Mike and Debbie just got back from a big family trip to Northern California, where they showed the kids redwoods and Yosemite and cable cars. I recently got back from San Francisco myself. I was there for a memorial.
On July 5, I had awakened in the morning and read my friend J. P.’s series of Fourth of July tweets about watching the parade and listening to New Order with his friends. That was the morning his sister Nell called to say that J. P. had gone to bed that night and never awakened. “They think it was his heart,” she’d said. His memorial had been as lively and gregarious as he had been, with plenty of vodka and much dancing to the Spice Girls.
The day outside is sweltering, but it’s cool and dark in the Upper East Side pub that Mike and Deb and I are taking refuge in. We order a few plates of fries and a pitcher of beer. I keep my phone in plain view, as I always do on scans day, periodically checking. What if, after all, I don’t hear its ring? What if it vibrates and I don’t feel it? How will I know if there’s something wrong?
For the past few months, Mike and Deb have been trying to get Debbie into another clinical trial, or even another facility that might offer a more hopeful course of treatment. So far it’s been a frustrating litany of rejections. “One place wasn’t taking any ob-gyn patients at all because two docs were on maternity leave,” Debbie says. The secret to cancer, like comedy, is timing.
Since the news of my trial’s success has gone wide, my ipi and nivo drug combination has gone into new clinical trials for a variety of other cancers—including ovarian. I had asked my trial doctor Evelyn, who’s now working on the ovarian clinical trial, to talk to Debbie a few weeks ago. But that trial isn’t recruiting any more patients right now, so my wonder drugs are currently out of Debbie’s reach. We’re hoping she can at least get wait-listed. Deb also tried to get into a trial for a new kind of chemo called birinapant through the National Institutes of Health. “I worked on it for months with my doctors,” she says, “then I got a letter saying that based on my scans I didn’t qualify.” A few weeks ago she met with someone at the Fox Chase Cancer Center in Philadelphia about trials and second opinions, but the doctor there recommended the same protocol Debbie’s current hospital is giving her.
This is the cruel reality of successful cancer treatment. You want so much for everybody to get what you got, and for it to work like it did on you, but that’s not how it happens. Instead, getting better often feels as random as getting sick was. Right now in Colorado, a 40-year-old father of three with Stage 4 melanoma is in the midst of a desperate public campaign to pressure Merck and Bristol-Myers Squibb to grant him compassionate access to an immunotherapy trial like mine. He will die in three months.
“So how was Cali?” I ask Deb as we dip our fries into pools of ketchup.
“It was fun,” she replies. “Everybody got along for almost the whole time.” This, when you travel with kids and are confined together for two weeks without the usual helpfully distracting buffers of your day-to-day social circle, is a major achievement. “How was it for you?” she asks.
“Great,” I tell her, truthfully. “I saw a lot of friends I hadn’t seen in a really long time. The DJ was fabulous. Best playlist ever.”
“Hey, I have a memorial playlist,” she says.
“Me too,” I tell her. “I call it ‘The Fun in Funeral.’ I have big plans for my big day. ‘Time After Time’ is my ultimate funeral jam. I also have ‘Jump’ by Van Halen. ‘There Is a Light That Never Goes Out.’ ‘Love Train.’ Oh and most definitely ‘O-o-h Child’ by the Five Stairsteps. What’s on yours?”
“Dammit,” Debbie says, “ ‘O-o-h Child’ is on mine. Okay, whoever goes first gets dibs.”
“That’s not funny,” says Mike. We both look up from our fries, thrown for a moment by the interruption.
“We’re just kidding around,” I tell him, but I feel ashamed and contrite.
“Well don’t,” he says. “Don’t say stuff like that. It’s not a joke.”
Debbie and I have done little else our entire relationship but joke. Even more ever since this whole fiasco began. We have joked about our internal organs falling out and infections and oozing scars and invasive procedures and awkward hair loss and awkward sex. We have joked about constipation. And diarrhea, too, because we don’t like to play gastrointestinal favorites. I almost don’t know if I know how to have a conversation with her that isn’t a joking one.
“I’m sorry,” I say. “It’s not.” I imagine this is all a lot less hilarious when you’re the one designated to be left behind.
I come home that evening and find Jeff splayed on the bed, watching the ceiling fan whir above him. “How were your scans? How are Mike and Deb?” he asks.
“Everything is fine,” I say. “Also kinda shitty. It’s so not fair. It’s all not fair.”
I feel his fingers brush against mine as outside the day turns into night. “I’m glad I didn’t lose you,” he says.
“I’m glad I didn’t lose you too,” I reply.
CHAPTER 24
The Graduate
November 6, 2013
I still think a lot about what my friend King said back when I was first diagnosed. The answer to “Why?” is “Because,” and the answer to “Why me?” is “Why not me?” Yet although that’s philosophically satisfying enough for me, it’s not quite sufficient to cancer researchers. When immunotherapy works, it seems to work like gangbusters. But it still doesn’t work on a lot of people. When I randomly met an oncologist from Sloan Kettering while sitting by a lake in Wellfleet this past summer, she knew who I was, but not by name. And she asked me, “It’s still such a small number of successes. The question is, why you?”
Jill O’Donnell-Tormey of the Cancer Research Institute surmises that after decades spent trying to understand the intricacies of the immune system and developing treatments that work on a sizable enough population, this is the next big puzzle to solve. “We’re in a place we’ve never been before,” she says. “We now have patients for whom immunotherapy works, and patients for whom it doesn’t. We now have a way to interrogate that. Is there a genetic difference in these patients? Is their immune system different? Are their tumors different? It’s unprecedented for immunologists to be asking these questions, and that’s really going to lead to new things,” she observes. But, she adds, “Even though people hear these great stories, immunotherapy is not an option for every single type of cancer. That’s why we have to do more research. We don’t have all the answers yet.” The story for scientists is getting really interesting now. But for me, it’s winding down.
After two years in this trial, I had a very romantic idea of how my last day of treatment—which falls conveniently right before my birthday—was going to go. I was going to kick back in my suite and watch movies all day. I was going to tearfully hug my doctors and nurses, and they were going to thank me for being such a great patient, and they were going to get misty-eyed too. I was going to finish up at my usual time, around 5:30 or so, and walk 20 blocks downtown to meet Jeff for my celebratory birthday-graduation dinner at Artisanal, and we were going to eat cheese, cheese, and more cheese.
Instead, the fourth floor is packed this day, and I spend most of it in the waiting room. Sloan Kettering is cancer’s hottest ticket now, evidenced by the steady stream of patients going in and out and the constant ding of the elevator. I have a granola bar for lunch while I wait for my blood work to come back from the lab.
Three years ago, in 2010, I was referred for an immunology consult before I even really knew what immunology was. Now I get emails from readers and friends of friends who’ve just been diagnosed with cancer, asking how they can have what I’m having. U
nfortunately, because of the limitations of access—or, frustratingly, because of doctors who aren’t keeping up with the advancements in their fields—not all of them are being accommodated. As immunology continues to make headlines, skepticism and resistance still abound, even as the demand for both approved drugs and clinical trials appears to overtake the medical community’s current ability—or in some cases, inclination—to meet it.
Dr. Pete notices it too. “I sometimes feel when I come to Sloan Kettering that even we are not prepared for the surge coming at us,” he says. “We’re at ground zero for innovation, and are turning people away. And then I look outside, go further afield: Are we really training the next generation of doctors to handle this? We need to think of ways to increase exposure and education all around the country—particularly in places where doctors are really good at other types of treatments but maybe aren’t so familiar with immunology. We need to find ways for more patients to have access to these treatments, and for more doctors to feel comfortable giving them and managing them.”
He continues, “The doctors we talk to care just as much as anybody. The challenge, I imagine, for them—that I give them the most respect for—is that they have to see so many different types of diseases. They’re often seeing different kinds of patients with different cancers. They’re seeing breast cancer, prostate, colon, the common cancers. Immunotherapy is still not the main type of cancer treatment. I hope it becomes a bigger part of it, because we know that chemo really doesn’t work for certain kinds of cancers. And I’d like to hope immunotherapy is as good for other kinds of cancers as it is for melanoma. Is the medical community really catching up? I wish it didn’t take so much time—but I understand it.”
There is no question that what worked so decisively for me isn’t for everybody. But my deep wish is that every person diagnosed with cancer can make informed choices with a compassionate, knowledgeable medical team. Not everybody needs my treatment. What everybody does need is attention, information, and options—and care they can afford.
At five I call Jeff and tell him we might as well cancel the reservation. By the time I finish up with my final treatment, around eight, most of my regular staff has gone anyway and my big hugging moment is instead a low-key wave to the skeleton staff and janitors. It is not special or triumphant or anything that would make a great scene in a movie. There’s no music, no montage at all. It is utterly banal and boring, down to the burger I grab on the way home. Except for the part where they have apparently cured me of cancer, it’s about as great as a long layover. This is what miracles look like. It’s not fireworks. It’s waking up another day.
Exactly one week after my last treatment, I’m back for my first follow-up as a graduate. I have until now avoided letting either of the kids come with me to Memorial—not so much because I worry it will upset them, but because I prefer my solitude when I go there. It’s easier when I’m not trying to entertain someone else. I like to go and read a book and simply be quiet so I can focus on the intense emotional upheaval it takes just to be there. But I am finished with my treatment—and God willing, there won’t be many more chances for Lucy to hang out with my medical team. Besides, there’s someone else she wants to see.
This morning I have given Lucy a day off from school, and we’ve gone together for my appointment. She watches me have my blood drawn and blood pressure checked and answer invasive questions about how often I poop. She also has a delightful time enjoying the unlimited tea from the beverage machine. Now we’re walking over to the main hospital to see our Gilda’s Club friend, Jessica.
In September, five days after her birthday, Jessica was officially rediagnosed with ovarian cancer. “It was a blow,” she’d told me, “because you hope against hope that it’s not happening. That maybe they’re wrong.”
She had told me that the first time she was diagnosed, the doctor showed her a sonogram of her tumor. “It was beating, like a heart,” she’d said. “The doctor said it had its own blood supply. I thought, I am going to name it Loki, the son we never had. I didn’t want to think of waging a battle with some invader. I just wanted to get Loki safely out of my body.” Then the trickster returned.
Jessica had her latest surgery four days ago. She had lots of pieces of herself taken out: cervix, spleen, appendix, some lymph nodes from her groin that will leave her with mild lymphedema of the left leg, what had been left of her omentum (which covers and protects the abdomen) from her first surgery, as well as a five-inch recto-sigmoid colon resection and a diaphragm resection. You learn all kinds of new body parts when you get cancer in them. The surgeons congratulated her afterward, so that ought to be a good sign—though she will later tell me that when she looks at her surgical report, “I want to throw up. Holy fuck. I should be dead.”
Now, as Lucy and I peek cautiously into her room to make sure we’re not disturbing a late morning nap, Jessica looks tiny in her hospital bed and loose gown. Her cheekbones seem more prominent. “Hey,” she says weakly. “Take off your coats and stay awhile.” A nurse comes in with some forms for her. “Do you want a therapy dog today?” she asks, and Jessica nods. “Can I get that little guy who was here on Monday?” she asks.
“Pepper isn’t here today, but I’ll send you Barney,” the nurse says. “Barney is a doll.” Jessica’s small, thin face lights up. If you want to heal a person, if you want to ease her pain and aid in her recovery, it is not just about sewing her up and handing her some meds. It’s about stuff like this: the support groups and the art therapy and the dogs. It’s about treating patients like they’re humans.
Lucy doesn’t say much as Jessica and I gab, albeit at a sleepier, more relaxed pace than usual. But my teen stays gratifyingly present nonetheless. She doesn’t pull out her phone or ask, “Can we go now?” She’s watching, and learning. You don’t need to do much. You just need to share the space. That’s what love looks like.
“Anything we can do while we’re here?” I ask. “I used to be a candy striper.” I spent my high school years making beds with perfect hospital corners—a skill that has vastly deteriorated in the three intervening decades, and one I doubt Jessica has any need of right now.
“Actually, yes,” she says. “You can walk me to the bathroom.”
It’s a grueling process. Great care must be taken as she moves out of the bed and onto her feet. We must walk slowly even though she no longer has an IV tower or tubes stuck to her.
“You’ve got this, sweetie,” I say. “I’m going to stay right here.”
She makes it inside and right in front of the toilet. I close the door almost all the way so she has privacy but I can get in there if she needs help.
“That was a lot,” she says when she’s finished. “My abdominal muscles started spasming in there.”
“We’ll just take our time,” I tell her, as we inch the handful of feet between the bathroom door and the bed. She seems not just in agony but actively concerned that Lucy is witnessing this. “I know you’re there,” she says quietly. “I just can’t turn.”
“It’s okay,” Lucy tells her.
The distress is visible on her face, and the journey to her bed takes three times as long as the one from it. By the time she climbs back in, she’s in deep need of pain relief and ringing for the nurse.
The nurse arrives quickly with some meds and helps her grind up the pills into her applesauce. When it all finally gets in, she heaves a sigh of relieved achievement.
Within minutes, she is noticeably calmer. “I was standing up in the bathroom,” she says. “I was holding on to a rail and it was like, ugh. It was pain outside of my ability to do anything to contain it. I just had to wait for it to release me.”
She looks down at her empty, scraped-up applesauce cup. “Dilaudid is really chalky,” she observes. “Why is it, with all the best pain meds, they skimp on the coating? Is it because they think people will swallow chalk to get high, so we don’t have to pay for the extra?”
“Not worth the splurge,�
� I reply. “You get some rest now. I’m going to let you sleep.” I can see the pain visibly continuing to ebb as she gives in to weary surrender. I see in Jessica the way I must have looked at various times as well. It’s hard to be the patient. It’s no picnic to be the one who loves the patient either.
She will later tell me she remembers nothing after she entered the bathroom. And later, when she has her last day of chemo, I’ll call her to see how she’s feeling. “I’m angry,” she’ll say. “I’m angry and I’m scared and I’m mad at myself for not just being happy and grateful.” The truth is that you can be angry and scared and happy and grateful and tired and fed up at the same time. I guess that’s the gift of cancer.
December 2013
One month after my last treatment, it’s a good time for immunology. James Allison wins the three-million-dollar Breakthrough Prize for Life Sciences. He says that among the things he’d like to use part of the funds for is developing a biomedicine study program for high school and college students. In announcing the award, co-sponsors Anne Wojcicki and Sergey Brin of Google proclaim that “scientists should be celebrated as heroes.” I couldn’t agree more. Just a week later, the American Association for the Advancement of Science proclaims cancer immunology the scientific breakthrough of the year, declaring, “Clinical trials have cemented its potential in patients and swayed even the skeptics. The field hums with stories of lives extended … for physicians accustomed to losing every patient with advanced disease, the numbers bring a hope they couldn’t have fathomed a few years ago.” The results of my own trial are cited as evidence.
Yet even though my outcome has been sensational, I still sometimes wonder, like a veteran who forever has nightmares of redeployment, what further horrors could be in store. A few months ago during a treatment day, my blood work showed that the calcium level in my blood was high. Dr. Pete had told me, “It could just be a hyperparathyroidism issue. It’s not uncommon.” But then he’d added, “In patients who have cancer—which you don’t—sometimes it means the cancer has spread into the bones.” He’d sent me to a specialist and assured, “When you’re looking at people as closely as we’re looking at you, you’re always going to find something.” It had turned out there was no cause for alarm, but I will always need monitoring. There will be CT scans and MRIs and skin checks and blood work. Until I die. And nobody really knows for sure what the long-term effects of my treatment are, because so few people have ever done this particular course before I did. But I don’t need to be reminded that I’m one of the fortunate ones.
A Series of Catastrophes and Miracles Page 23