A Series of Catastrophes and Miracles

by Mary Elizabeth Williams

  The toll both disease and its treatment extract can be profound. Writing in 1957, Australian virologist Macfarlane Burnet concluded that “there is little ground for optimism in cancer,” but added that while at the time “anti-cancer drugs are also carcinogens.… A slightly more hopeful approach, which is, however, so dependent on the body’s own resources that it has never been seriously propounded, is an immunological one.”

  When President Richard Nixon signed the National Cancer Act of 1971, it was the beginning of a new era in looking at how cancer behaves—and exploring new ways of treating it. Recalling it now, Dr. James Allison, professor and chair of immunology and executive director of the immunotherapy platform at MD Anderson Cancer Center, says, “The best advisers in the field said, ‘We don’t know much but to throw chemo and radiation and surgery at cancer.’ I think what subsequently came out of that work was an amazing amount of detailed information about normal cell growth regulation and how it goes awry in cancer. It’s really magnificent. All that work was essential and had to be done.”

  Nearly 40 years later, in 2009, the Obama Administration launched a similar initiative, vowing a broad allocation of funds toward medical research across a wide spectrum, including one billion dollars for “research into the genetic causes of cancer and potential targeted treatments.” Yet even now, the default protocols for patient treatment are still often limited to the familiar trio: surgery, radiation, and chemo. And although overall cancer incidence and death rates have declined since what became known as the 1970s War on Cancer, progress has been slow and success has been erratic.

  One of the other great challenges for researchers has been that cancer has an exasperatingly bountiful array of manifestations. There are more than 100 different kinds of cancer that affect humans. There are cancers of the blood and bones and organs. Cancer is many, many things, though “sneaky” and “unpredictable” tend to be among the universal traits. A big breakthrough for one form of it doesn’t automatically mean a hopeful “cure” for any other types. Your neuroblastoma isn’t someone else’s breast cancer. The phrase “breast cancer” itself can mean different things to a person with the BRCA2 gene mutation and one without it. And because of individual circumstances and cell mutations, my melanoma isn’t your melanoma.

  That’s why there will likely never be a cure for cancer. And I say that as someone who has, for all intents and purposes, been cured. Cancer is not a single disease, and it almost certainly can’t ever be addressed with a single magical potion. It has to be approached with a variety of protocols. So when well-meaning people—or, more infuriatingly, certain cancer organizations that ought to know better—talk about finding “the cure” for “this disease,” it’s a good bet that they are talking a lot of nonsense. The path of medical research progress is not leading to one solution for everything. But as science moves forward with increasing sophistication and depth, there are going to be more and more patients like me: people fortunate enough to obtain a specific treatment—or combination of treatments—that seems to eradicate their cancers. Even then, though, there will probably always continue to be people for whom those same treatments simply don’t work. We aren’t built on assembly lines. Our bodies are unique. Our cancers are too.

  CHAPTER 3

  Welcome to Cancer Town

  August 12, 2010

  Imagine that someone woke you up in the middle of the night, put a pillowcase over your head, threw you in the trunk of a car, and then dumped you in a foreign country with the parting message, “This is where you live now.” You don’t speak the language. You don’t know the terrain. Your new job, for whatever you may have left of your sorry life, is to figure it out. This is what the period immediately following finding out you have cancer is like.

  Take, for instance, Midtown East. I’m never in this part of Manhattan. There’s absolutely nothing to ever bring me here—no work commitments, no friends, and God knows no decent bars. As Jeff and I walk toward 53rd Street and 3rd Avenue this late weekday morning after dropping the kids at camp, I am painfully aware that this neighborhood of drab office buildings and coffee carts, of Duane Reade and Jamba Juice, is about to be a stranger to me no longer. I have already added Sloan Kettering to my contacts list on my phone. In time I will learn medical terms and drug names; I’ll figure out where to go for soup or a magazine too. I’ll belong here. The impending familiarity of it all makes me immediately, desperately despondent. This is where I live now.

  We are already approaching our destination nerve-rackingly ahead of schedule and it’s almost noon—two conditions that I take as signs from the universe. “We have plenty of time for a drink,” I tell Jeff. Because we don’t yet know the area and don’t feel like working too hard, we just duck into the café downstairs at Bloomingdale’s. I order a Stoli and tonic and popovers with extra butter and give the waiter a look that says, “You want to make something of it?”

  Poor Jeff. Just a few weeks ago he had a healthy dad, a healthy partner, and was enjoying plenty of healthy makeup sex. Just a few weeks ago, after a rough couple of years, things were really looking up for the guy. Now he’s sitting at a table across from a woman who’s trying to gauge how sober she has to stay to fathom what her new oncologist has to say, and how drunk she needs to be to hear it.

  “You know,” Jeff says, “cancer’s not like it used to be in the old days. You might not even lose your hair. Dad didn’t.”

  Jeff’s parents live just a few miles away in the suburbs of Westchester. For 20 years, they’ve been the guiding parental figures of my life. My own father walked out three months before I was born, and I’ve only ever met him a handful of times in my life. I’m not even sure where he lives. My mother and I have a strained and distant connection. I love her, and I know she loves me. But there are mental health issues that keep us apart. We rarely speak, and even though she lives a short train ride away in New Jersey, I haven’t seen her in five years. I haven’t told her yet I have cancer, and I’m not sure how or if I will. You don’t always get a good relationship with your parents in this life. You don’t always get a relationship, period.

  Jeff’s folks, in contrast, took me in as one of their own from the first time I came over for dinner. Even when Jeff and I were separated, they included me in family events and treated me like a daughter. When we called them last night, we drafted them into our cancer crisis management team, because I love and trust them. And because they have experience.

  Thirteen months ago, Dad was diagnosed with colon cancer during a routine checkup. He sailed through surgery and a relatively mild course of chemo, staying healthy enough along the way for vacations in Japan and Scotland. He and Jeff’s mom have been everywhere, and they live to travel. The walls of their home are covered in photos and Dad’s paintings from their adventures. When Dad finished chemo in March and the doctors declared him cancer free, he and Mom immediately booked a fall sightseeing journey through the national parks of the Southwest canyons.

  But just last month, on his follow-up annual CT scan, the doctor saw what looked like the cancer again, spreading to his stomach. A biopsy confirmed it. He’s starting a second round of chemo in September, and now the vacation will have to wait. “That’s how it is with the crazy cancer,” Mom had said when she called Jeff to tell him. “They think they’ve got it and it comes back.” This time, the doctors say, the chemo is going to be more “extreme.” Dad and Mom responded by planning a trip to Key West for the winter.

  Dad’s slowed down a lot in the past year. At 78, he’s not exactly psyched about having his cancer back just a year after going through it, but he’s far from grim about it. “I feel like I have a lot more things to do yet,” he always says, “and I don’t see why I wouldn’t do them.” And as a retired minister who met his wife while they were at seminary together, he has a well-mastered system for dealing with life’s spiritual challenges. Jeff and I have been trying to follow his lead and remain hopeful and optimistic. About him. Now, about me too. Because I a
m only 44, and I have a lot of things to do as well.

  I think of Dad as I pick at my popover, feeling the vodka going straight to my already adrenaline-flooded system. “When this is over,” I say to Jeff, “I’m going to open up a bar directly across the street from Sloan Kettering, and I’m going to become a millionaire.”

  “I always knew you’d be my gravy train,” he replies. “What are you going to call it? The Stage 4 Deli?”

  “Nah,” I say. “I was thinking Terminal.”

  After our fortifying carbohydrates and alcohol, Jeff and I make our way at last to one of the few New York City landmarks I’ve never visited: Memorial Sloan Kettering Cancer Center. This place is famous. It’s the oldest and largest private cancer center in the world. It’s the Madison Square Garden of research, the Radio City Music Hall of chemo. In the national ranking of cancer facilities, Sloan Kettering eternally races neck and neck for the top spot with Houston’s MD Anderson. By virtue of my health insurance network, my dermatologist’s affiliations, and the fact that I live in New York City, I have been hooked up with one of the premier treatment centers in the world. I still have malignant melanoma, but in terms of cancer care, I have hit the jackpot.

  Yet even with its auspicious reputation, MSKCC is still not what I expected. Up to this point in my life, my blessedly limited experience with medical facilities has been that they’re where you go to get treated like garbage when you’re sick. They’re where the administrators ignore you and act exasperated when you ask questions and leave you freezing on a stretcher for hours at a time. They’re where harried, cranky doctors fend off crazy people in dingy emergency rooms, and Nurse Ratcheds with clipboards browbeat you about filling out your forms incorrectly. That’s what I think, anyway, because that’s what I’ve endured in the past.

  This joint, in contrast, is like the nicest Marriott Marquis I’ve ever seen. There’s soothing lighting and a waterfall wall in the lobby, and a concierge desk where the nervous newbies are directed to their destinations.

  Up on the third floor, a cheerful squad of administrators greets Jeff and me as if they’ve been looking forward to seeing us all day and ushers us to the waiting area. There is a station of free coffee and tea, and crackers and hard candy. There are orchids and large windows and happy paintings of flowers. The last time I was anyplace like this, I was using the spa gift certificate a friend gave me for my birthday. “Yikes,” I say to Jeff. “I must be in huge trouble.”

  The fact that everything here is easy and welcoming only serves to throw into sharp relief the palpable sense of terror in the air. There is a girl in her early 20s across from me sporting a Led Zep shirt and a peach fuzz haircut. There is an elderly couple slumped on each other on a couch. There is a middle-aged man speaking into a cell phone in clipped, authoritative Russian. None of them are crying; none are losing it. They simply emanate the urgency this space and this situation command. Outside, afternoon shadows are falling over the East Side. From my chair in the waiting room I can see straight into the building across the street, at the office workers back in the real world briskly moving around their cubicles. Do they ever look over here at us? Do they see our faces, and wonder how we got here?

  A doe-eyed girl in a black sheath dress strolls into the room. “Miss Williams? Mary Williams?” she chirps brightly.

  “It’s Mary Elizabeth,” I say. I don’t want to be an abbreviated name on a form. I don’t want to be a patient at all. I want someone to tell me this was just a silly mix-up and to go home now.

  Instead, the manic pixie hospital admin beckons me to follow her. I wave to Jeff like I’m being led into a war crimes tribunal as she ushers me into an examination room, where she hands me a seersucker robe. Seersucker. I should have known that an East Side joint with a name like Sloan would be the preppiest hospital in the United States. I wonder if they switch to plaid flannel after Labor Day.

  A few minutes later, my new oncologist, Dr. Partridge, strolls in. She has a chic bob, platinum gray hair, and a patrician manner befitting our elegant surroundings. But her eyes are lively and bright, and I sense immediately a distinctive air of mischief about her.

  “Let’s take a look at what we’ve got here,” she says, pulling apart the hairs on my head and inspecting the damage. “Yup,” she says simply, and my last hope that I don’t belong here dissipates. “Now I need to feel your lymph nodes,” she adds, and suddenly she’s thrusting her hands around my neck.

  This morning as I drank my coffee, I had practiced my speech. But here, in this humblingly short gown, the words don’t come out so easily. “I want to tell you a few things before we move forward,” I say as she prods my armpits and I squirm. “I have a family and a career and a parent with cancer, and I can’t be stressing out about this too. So all I want you to tell me is what you’re going to do and what I need to do. I don’t need anything else. Okay?”

  Her demeanor is crisp and professional. “Of course,” she says, before adding, “So tell me about your kids.” She thumps around my body, pushing her fingertips into my groin as I brag on about the girls, grateful for the distraction.

  Then Dr. Partridge tells me, gently but emotionlessly, what I’m in for. “Your lymph nodes feel good,” she says, “so my initial opinion is that this is treatable. But this is a sizable melanoma, and we’re going to be very aggressive about removing it.” She takes a breath, long enough for me to run the words “treatable” and “aggressive” through with the highlighter pen in my brain.

  “We’re going to operate,” she continues, “and we have to remove around the margins as well to be safe.” She grabs a pen and draws a neat circle, roughly the diameter of a good-size plum, on a piece of paper. “Based on the size and depth of your tumor, this is what we’re taking off. We’ll take a skin graft from another part of your body, either your neck or your thigh, then replace the skin. Do you have a preference—right or left side?” Apparently I get a say in which half of my body is harvested but not which part. Then she adds nonchalantly, “You’re going to have a bald spot. The hair won’t grow back. We also need to biopsy your lymph nodes, so we’ll remove those from your neck. Then when we get back all the information from the surgery, we’ll know how to proceed with your course of treatment.”

  I cling to one word. “It’s treatable,” I say.

  “I said I believe it’s treatable,” she replies. I understand. No promises. No miracles. She pulls out a date book and says, “It seems like we want to get this over with soon. How’s next Friday?” She says it like I’m going to say no, like I’m going to have other plans that will conflict with the removal of my malignant cancer.

  This is close to what I do. “The 20th? I guess so,” I reply. It’s the girls’ last day of camp. We usually celebrate it with a night out of Chinese food and an outdoor movie by the Hudson River. “How does this work?” I ask. “Is this an in-office procedure? Local anesthetic?”

  Dr. Partridge casts a quizzical look in my direction. “Uh, no,” she says. “You’ll have to stay at least one night in the hospital, maybe more, depending on how the surgery goes and how you’re feeling afterward.”

  “I see,” I answer. No Chinese food or movie that night after all. “We have tickets to a Liberty game for Sunday,” I continue. “Do you think I’ll be able to go? Will I be back to work on Monday? Tuesday I’m taking my older daughter to see Wicked.”

  “You’re going to miss your basketball game,” she tells me, patiently. “You’re not going to be ready to work for a few weeks. You’re going to put your feet up, and be treated like a princess for a while. You’re not going to do housework; you’re not going to cook; you’re going to be waited on hand and foot.”

  Never has a promise of rest and relaxation sounded so fraught with dread. You’re not going to do all the things that make your life a glorious mess, you see, because you are not a normal person anymore. You are a sick one. Your little bump on your head is not a little bump in your life. This thing is about to change all your god
damn plans. You’ve earned this extended staycation the worst way possible. “I guess I don’t really know how this works,” I say. “I’ve been lucky so far.”

  “You’re right,” she says as she puts her hand around my shoulder and walks me back out to the waiting room. “You were lucky.” Were.

  That night Jeff and I sit the kids on the couch and tell them the plan we hastily hatched on the subway ride home. “Next week, I’m going to the hospital for a night or two so they can take my cancer out,” I say. “You’re still going to camp, and then you’ll go out to Grandma and Grandpa’s for the night. When you come back, I’ll need some time to recover, and I’ll have a bald spot on my head, but I’ll still be Mom.”

  My firstborn, ever practical, has a few questions. The primary one is “Who’s going to do my laundry?”

  “I’m going to take care of everything,” Jeff says, and Lucy looks utterly appalled.

  “You’ll be out of the hospital in time for us to go to Wicked, right?” she presses further.

  “The doctor says I won’t be well enough yet to go out. Daddy’s going to take you,” I explain. “And Grandma will stay here to help me take care of Bea.”

  That’s when both of my children start crying at the horrible unfairness of it all. “You and I were going to go!” Lucy sobs.

  “Daddy and I were going to order a pizza!” Bea pouts.

  The idea that Mom has cancer, a disease my children only vaguely understand as the thing Grandpa had to get an operation and treatment for, is incredibly abstract. But Mommy not doing laundry, not taking them to shows? Now, that’s serious.

  “No,” Lucy says through angry tears. “I don’t want Daddy to do my laundry, and I don’t want Daddy to take me to Wicked.”

  “I’m sad too,” I say. “Maybe when I’m all better, you and I can go too?”