The next morning is a Saturday, but sleeping in never seems to happen when you’ve got two young kids. Today is no different. The sun’s barely up when the girls come bounding in to the bedroom from whatever cannon they’ve been shot out of, jumping on the bed in a pile of giggles, deftly attacking only my right side. My eyes blink open reluctantly. The girls are demanding attention, chanting, “Wake up! You’re cancer free! You’re cancer free!” as they smother me in kisses. Now this I can get up for.
I’ve still barely been outside yet, but today, we’re off to visit Jeff’s parents in the burbs for the first time since my surgery—and only the second time since Dad got rediagnosed. Dad looks tired but happy when I come in to the house and hug him, hug him there in the living room lined with his paintings of flowers and mountains and trees. “How are you feeling?” he asks. “Now, are you going to be getting chemo like me?”
“No chemo,” I say. “Nothing else for now. I still have to meet with the immunotherapy doctor, but I don’t even know what that would involve.”
“Oh, that’s so fortunate,” he says, and I can tell he’s anxious about starting treatment again. He looks more worried this time than last. I know he’s trying not to let it get to him, determined not to let it interfere with his artwork and his busy schedule of museum trips and volunteer work and seeing friends. Nevertheless, it’s an aggressive regimen.
Later, when I rise from the afternoon nap that the kids’ early morning assault and the pain meds have made necessary, I find Dad out on the back porch with the girls. The three of them are patiently painting watercolors of a vase of gerbera daisies that perches on the table in front of them. It’s a nice afternoon for painting.
When I groggily ask how he’s been doing, he says, “The doctor says my numbers are good. You know, chemo’s not so bad. It’s mostly just boring. I’ll bring a book. Or write in my journal.” I imagine he has a lot of pages yet to fill.
The rest of my recuperative days pass in a blurry haze. Friends continue to generously bring over meals, dishes that my daughters fussily push around their plates. “Why did our mom have to be the one to get cancer?” Bea pouts in contempt at a neighbor’s chicken potpie. I, on the other hand, am stunned by all this kindness, humbled, and a little uncomfortable with it. It’s strange to let people be so nice. It’s strange to be so taken care of. I used to think I was strong because I could fend for myself. I didn’t know how much of a challenge it would be to surrender control like this. Come to think of it, I have always made a terrible submissive. The lesson of cancer appears to be getting me in touch with my inner power bottom.
Jeff and I have fallen into an elaborate maintenance routine. There’s a folding table now in the bathroom, full of all our supplies—the squirt enema bottle and the gauze and the cream and surgical gloves and the meds. I hate it. It all makes me feel sick and old, like my grandmother at the end, propped up on pillows, surrounded by pill bottles. Twice a day, either Jeff or my nurse friend Jolie, who stops by on her way to her grueling shifts at the hospital like it’s no inconvenience, will bust out the Fleet and clean my scalp, anoint it with a layer of Silvadene cream, and then cover it with a protective pillow of gauze and a head scarf. Then I get a modified version of the same procedure on my thigh. Despite all the precautions, in the mornings, I sometimes wake up smeared in blood. But while I’m still in a lot of pain, it’s getting better every day, and the bottle of 30 Percocet I’d been granted is dwindling. “Are you going to save some pills for a rainy day?” my stoner friend Tad asks one afternoon as we sit in the park together, watching squirrels. I just had major surgery involving three different parts of my body, Tad, I think. I can’t imagine there will come a time when I could possibly enjoy narcotics as much as I do right now.
My hair, meanwhile, is not exactly filthy, but it’s definitely been roughing it. Hygiene has to be approached with the utmost of caution. Every two or three days, Jeff helps me shampoo, taking extra care around the surgical scar. I sit in the bathtub as he leans over me, helping me to suds up while avoiding the wound, and pouring fresh water from a plastic cup to rinse. Think Redford and Streep in Out of Africa, but gross and full of blood, and instead of Africa, it’s a cramped Manhattan bathroom. Blow-drying is not even a remote possibility.
I still don’t like to see my head or touch it or acknowledge it exists. I can, however, smell it clearly—and it doesn’t smell like a nasty infection at all. It smells clean and earthy, like a sweet sort of sweat, like sex after a shower. “We still have some pus today,” Jolie soothingly relays to me one early morning, en route to work, adding with a loving sigh, “but your granulation is beautiful. Now what’s this dark business here at the edges? I can’t tell if it’s scabbing or necrosis. Don’t worry about it.” I have a beautifully granulating, sexy smelling, large, infected head wound with flesh that may or may not be dying. It’s all going so well.
October 2010
I am back at Sloan Kettering this morning for post-recovery MRI and CT scans, and a brief consultation with Dr. Esposito, one of the hospital immunologists. As a newbie to cancer, I am still unfamiliar with its protocols and treatments, so I don’t get that this is not an especially typical experience for someone who’s recently dealt with melanoma. I don’t get that having a meeting with one’s immunology team is unique—because having an immunology team at all is unique—or that I am dealing with a crazy-smart group of individuals who’ve spent the past several years developing innovative treatments, many of which are not even available to the general market.
I don’t know yet that the current chair of immunologic studies at MSKCC is James Allison, or that Allison is basically the rock star of immunotherapy—so much of a rock star, in fact, that he sings and plays harmonica in a group called the Checkpoints. I don’t know that his team’s work in uncovering the intricacies of a protein called cytotoxic T-lymphocyte antigen-4—or more familiarly, CTLA-4—is currently paving the way for the biggest breakthrough in melanoma treatment in decades. I just know I’m here to meet with Dr. Esposito, because Dr. Partridge said so, and that I am going to get a Pinkberry after this, hell yes, I am.
“Your margins were clear,” Dr. Esposito says, repeating Dr. Partridge’s assessment, “and there is no standard of care for Stage 3 disease,” he says, “let alone Stage 2c like you.” Although I am not happy he’s just let the cat out of the bag regarding my staging, the big picture sounds great to me. Not getting additional therapy suggests confidence in my cancer-free status. “There’s no point in referring you to a clinical trial right now because you wouldn’t qualify,” he explains. “We do have one going on right now for a drug called ipilimumab, but it’s for later-stage patients. If down the road your status changes, though, it’s good to have you in our system.” I thank him, buoyed by the notion I don’t need him, and have forgotten the word “ipilimumab” by the time I get down into the lobby. He, meanwhile, will go on to write in his report of our meeting: “Her tumor showed features which increase her risk for recurrent disease, including depth of 8 mm, ulceration, and close deep surgical margin, given the scalp site. Disease can recur locally or can be metastatic.” I’m glad I didn’t know any of that then. I’m glad I didn’t know what I was in for.
INTERLUDE
Immunotherapy 101
Immunotherapy is not like chemo or radiation. When it works (and unfortunately, it often doesn’t) it coaxes your body’s own defenses to attack disease—and then, astoundingly, to continue defending the body after treatment has ended.
In the past few years, as more of these treatments have been going into clinical trial and making headlines, the buzz has made them sound like the next big thing. The reality is that unlocking the mysteries that the immune system holds for cancer treatment has, for researchers, been a laborious—and often thankless—pursuit in a field that not too long ago was regarded by many as a dead-end fringe of science. Its moment has been a long time in coming. It all begins, as these stories so often do, with the personal.
> In 1890, Elizabeth Dashiell was a teenage bone cancer patient at New York’s Memorial Hospital—the same facility that would later become Sloan Kettering—and bone surgeon William B. Coley was her doctor. Her death just a few months after diagnosis moved Coley deeply, and spurred him to try to understand why some patients, like Dashiell, succumbed, while others survived. His research soon led him to observe that cancer patients who developed bacterial infections after surgery seemed to fare better than those who didn’t—perhaps, he conjectured, because there was something in the bacteria that adversely affected tumors. In 1891, he began experimenting with injecting cancer patients with live bacterial cultures (Coley later developed a heat-killed version of his therapy)—and what became known as Coley’s toxins produced durable regressions in some patients.
Coley continued to use his form of therapy on nearly a thousand patients for the following 40 years of his career. But with the rise of radiation and chemo—and the inconsistent patient response rate to his toxins—the treatment was eventually assigned “new drug” status by the FDA and essentially banned from use.
But the work of Coley and his colleagues was encouraging enough to keep the flame going. In 1953, with the help of a $2,000 grant from Nelson Rockefeller, Coley’s daughter, Helen Coley Nauts, and her friend Oliver R. Grace founded the Cancer Research Institute—the first and still only nonprofit organization in the world dedicated solely to cancer immunotherapy.
“She really felt immunotherapy had been abandoned by the medical community prematurely,” says Jill O’Donnell-Tormey, the institute’s chief executive officer and director of scientific affairs, “because she tracked hundreds of patients that her father treated, and saw that many of them had benefits. You’re probably talking less than 10 percent, but these people didn’t die of cancer; they died of other things. Many years after. She was convinced it was because of Coley’s toxins. As Lloyd Old, who was head of our scientific advisory council for 40 years, used to say to her, ‘Helen, the science has to catch up to your father.’ ” And when Old, who was also the William E. Snee Chair of Cancer Immunology at Memorial Sloan Kettering, died in 2011, his New York Times obituary called him “the patriarch and chief proponent of a nascent branch of cancer treatment known as immunology.”
Of course, if you or someone you care about has had cancer in the past several decades, you most likely didn’t have the luxury of waiting for science to catch up. As a wise friend once put it to me, there’s a difference between treating a patient and curing a disease. All these years, as doctors have continued to treat patients, researchers have continued persistently to try to cure disease.
That journey has been a challenging one. Nobody would suggest that protocols like chemo or radiation or surgery are easy, but the job they do on cancer cells is more straightforward. My friend Steve, who is both the most die-hard Burning Man veteran I know and a big smarty-pants head of research at a California biotech company, explains it like this: “Tumor cells are evasive. If you look across treatment, there are the cytotoxic drugs [like the ones used in chemo]—they kill cancer cells, but kill anything else in your body that’s dividing rapidly. That’s the traditional way of treating tumors.” In contrast, the elegance of immunotherapy is its selectivity. When it works, the body recognizes and destroys the cancer, with little or no collateral damage.
But getting a handle on the human immune system has taken—and continues to take—a lot of time and a lot of trial and error. Modern immunotherapy’s main forerunner is interleukin-2, an immune system treatment for patients with metastatic cancer that is infrequently used, sporadically effective, and famed mostly as the stuff they gave Izzie on Grey’s Anatomy when she had Stage 4 melanoma. “It was one of the original cancer therapy drugs,” says Steve. “It was used in kidney cancer and melanoma. It turned out that it didn’t work very often—but in a rare number, patients were completely cured.” As time passed, he says, “We got to understand better about the immune system and how cancer cells subvert it.” The immune system is smart. It learns. It remembers. The challenge has been harnessing it, but we’re getting there. It’s not the typical scorched-earth policy to cancer treatment. It’s an activation of the body’s own incredible weaponry.
And now, after decades of research, immunology is finally having a moment. New drugs offer hope for patients with once near-unbeatable cancers. There have been breakthrough vaccines like Gardasil, which prevents human papillomavirus (HPV), the virus that can lead to cervical cancer, and Provenge, to treat prostate cancer. There have been profoundly promising successes in what’s called adoptive T cell therapy, a process by which a patient’s T cells are collected, reengineered, and then reintroduced into the body to fight cancer.
And then there is what I eventually got: monoclonal antibody therapy. Cancer ingeniously sabotages the brakes, or checkpoints, of the immune system. It suppresses the body’s natural aggressive, take-no-prisoners response. But one way to get around it is to go in via what are called checkpoint inhibitors: therapies that essentially release those brakes. It begins by introducing man-made antibodies into the patient that then bind themselves to the killer T cells, releasing them to attack cancer like Pac-Man devouring pellets. It’s an ingenious means of bypassing the dangerous signal that cancer sends to disrupt the immune system and allowing the body to do what it’s supposed to do: kill those sonofabitch cancer cells—and only the cancer cells.
“Cancer is adaptable,” says James Allison. “It’s incredibly able to deal with change. Unless you take out that last cancer cell, it can come back. But step back 200 feet. What we know about the human immune system is that it’s also designed to be adaptable. It’s designed for this.”
CHAPTER 6
One in Three
November 2010
The last time I saw my friend Carolyn was so long ago that Lucy was still a toddler in a stroller. But today we are together, eating lunch at an artsy bistro near an old movie theater and celebrating many things, including our forthcoming autumn birthdays, conveniently located just a few days apart. I find cancer has been an incredible motivator in my social life. “This place is great,” she tells me. “I used to come here with Georgiana.”
Georgiana was Carolyn’s adventurous, outdoorsy workmate. She was in her 30s when life handed her a degenerative—and fatal—soft tissue disease. As we dive into our tomato soup and bread, Carolyn speaks lovingly of her comrade—of the swift diagnosis, of her slow, wrenching decline, and of her dry sense of humor. “Near the end,” she recalls, “she thought I was spending too much time with her. She used to tell me, ‘You know, I’m not going to be around much longer. You’d better start making some new friends.’ ”
“I think one of the most annoying things about having a terminal prognosis would be feeling like everybody is just waiting around for me to die,” I say. “I wouldn’t want people to look at me like, ‘What are you still doing here?’ ”
“Oh, hi! I thought you were supposed to be dead weeks ago!” Carolyn laughs. Then she adds, quite sensibly, “I want something sparkly,” and orders us two glasses of Prosecco.
“To your health,” I say.
“To yours,” she replies, and our glasses make a happy clink.
We spend the rest of the afternoon browsing pawnshops and thrift stores. “It’s the photo albums that make me sad,” she says, as we leaf together through a leather volume filled with images of Nixon-era hairstyles and casual smoking. “These people are probably all dead,” I observe idly, “and now they’re going to wind up in some idiot hipster’s art project.”
These ticket stubs and playbills and matchbooks, these graduation day photos and wedding invitations, they once meant everything to the person who lived them. Now they’re just a curiosity on a table in a shop. Although my mementos may not someday appear underneath a jackalope and next to a set of Fonzie jelly jar glasses, in time all those letters and photo booth strips that added up to my life will be gone too. I understand that now. I’m here for a time, an
d then I’ll be just a memory, like a photo of an unknown man with a wide collar and a Pall Mall dangling from his lips. Thank God that day isn’t here yet.
When my birthday rolls around a few days later, I am the happiest to mark one more year on the planet than I have been since I turned 21—and back then I celebrated the milestone by drinking something with a worm in it. No matter what happens from here on in, I most likely have more time behind me than ahead. My head is changed, permanently damaged and weird, and currently still rebuilding itself and slathered in ointment. My free and unfettered pleasure of walking down the street on a sunny day has changed. My friendships have changed, and a few apparently have already evaporated altogether. But I’ve had people I didn’t think even remembered me tell me they love me. I got to hear the stuff most people don’t get said about them until their funerals. I can still work. I can still run. I can still hug my family. I’m still here. I think I did get the best summer ever after all. It was the one that saved my life.
A few days after my birthday, exactly three months to the day after my diagnosis, it’s 10 p.m. and I am uncharacteristically online, working on a story I have to file first thing in the morning. I give so much of my day to the Internet that I’m strict about avoiding it at night. Tonight, however, I have to be in front of the glowing screen, layering my notes into what I hope will become coherent sentences, when a distracting bloop tells me I have a new message. It’s from Debbie, and it’s addressed to me, Jill, Michele, and four other close friends. The subject is “My Lady Parts.”
“Sorry for the big group email,” it begins. “I had an appointment today with my new gynecologist, and he confirmed that I have ovarian cancer. I’m getting CT scans tomorrow to see if anything else shows up, and he’s going to do a hysterectomy on Wednesday. I’m told to expect to be in the hospital three to five nights, and then have a four-week recovery. After that I’ll get chemotherapy, the amount depending on what he sees during the surgery. Then I’ll be all better and life will go on. The upside is he told me clear liquids include vodka. I like him.”
A Series of Catastrophes and Miracles Page 6