A Series of Catastrophes and Miracles

by Mary Elizabeth Williams

  I was supposed to visit Debbie in Philadelphia this weekend. Debbie and I arranged it several weeks ago, soon after she started chemo. Mike and the boys are going down to Florida for spring training, and we were to have a girly weekend of art museums and window-shopping and elaborately strung-together profanities. I had paid for my bus ticket and made reservations for dinner at Le Virtù, our college friend Cathy’s Italian restaurant in South Philly.

  When Dad got sick, I knew it was highly improbable I would be able to make the trip, but I had told myself it was possible. Just a few days ago, Jeff and I were making plans for how he’d come home to take care of the girls for the one night I would be away. Then we were in Denial. Now we have to get into Acceptance.

  “I’m sorry,” Jeff says. “I know you were looking forward to seeing Debbie.”

  “Don’t be stupid,” I say. “I’m just glad I came here in time to hang out with Dad.”

  I have to get home to get the girls from school, so I go over to Dad’s bed one last time. He’s sleeping now, his breathing shallow but steady. I flash back to a spring night two decades ago, nervously meeting my boyfriend’s parents for dinner. “I’m Jerry,” he’d boldly said, “but you can call me Dad if you like.” I’d never called anybody Dad before.

  “Goodbye, Dad,” I whisper. “I love you.”

  I make it out of the hospice, back onto a Metro-North full of U2 song–slurring midday drunks clad in green, onto the subway filled with more of the same, over to school pickup, and all the way home—clutching a broken cable box the whole time—before I start to fall apart.

  “Why don’t you watch The Princess Diaries?” I suggest to the kids as I close the bedroom door, and I pull myself together long enough to call Deb to cancel our weekend. “How’s the chemo been going?” I ask hesitantly.

  What you don’t want to say to someone who’s undergoing cancer treatment is anything that sounds like you’re pressuring her to get better. No “Not much longer, right?” No “I thought you’d be done by now.”

  “They’re telling me I have to get my CA 125 number down,” she says. Cancer antigen 125 is a type of protein that’s used as a marker for the presence of ovarian cancer. A number of 35 or under in your blood work is considered normal, but in ovarian cancer, normal is relative. “A few weeks ago it was down to 120,” she says, “so I thought, swell, we’ll be wrapping this up in no time. Then the next week it was up to 150. They keep telling me not to get hung up on the number. When you’re saying I have to keep doing chemo until I get my number down, I think maybe you’re the ones hung up on it.”

  “So, speaking of cancer,” I say, because I am that brilliant with a segue, “Jeff’s dad is going to go at any minute so I can’t leave town.”

  She doesn’t hesitate, not even a second. “It’s like he didn’t even think about us,” she says.

  “I know,” I reply. “He’s such a ruiner. I promise I’ll come down when he’s dead.”

  “All right,” she says, “but then you’re going to have to put up with Mike and the boys.”

  “Just for that, I’m bringing Jeff and the girls,” I say. “Two can play that game.”

  “I guess I’ll see you soon, then,” she says.

  “See you soon,” I answer, and then I put down the phone and sob like a child until Anne Hathaway assumes the title of heir to the throne of Genovia.

  Friday comes, and though Dad is lapsing out of consciousness more frequently, he is still hanging on. The logistical challenge of another weekend of solo parenting is the least of it—the girls and I know how to function capably as a trio. We had plenty of experience the period Jeff and I were separated, and we’ve been crushing it all month. This time, however, the mood is sadder and more ominous. “Can’t we visit Grandpa?” they ask, and it kills me to tell them it’s not a good idea.

  “He’s very sick and very weak,” I explain. “He can’t speak, and he’s really out of it with the medicine. You can make him cards.”

  So Lucy draws a diagram called “My Grandpa” mapped out with the words “Funny. Generous. Kind.” Bea meanwhile scrawls “I love you” and draws a sunny picture of the two of them together. They’re beautiful. He will never rouse enough to see them.

  Our school’s art teacher has a trip to the Museum of Modern Art planned for Saturday, so we immerse ourselves in an afternoon getaway of beauty. We stand, awed, in front of Van Gogh’s “Starry Night.” As the children sprawl in front of a Jackson Pollock, Bea raises her hand to share something with the group. “My grandfather is a wonderful artist,” she says, “but his stuff isn’t like this.” I bask in the pride in her eyes, savoring the fact that for today, she can still talk about her grandfather in the present tense.

  We go home, and I make pancakes and bacon for dinner, because, why not. Afterward, we stride on to the baseball field by our building, where our astronomer friend Jason has set up his telescope so we can look at the sky. Tonight the moon is the closest it has been to Earth in 18 years, and it’s big and bright and at least for tonight beats the pants off anything in Times Square. But there are other wonders in the sky.

  “Look over here,” Jason says, as he spins the telescope in the direction toward a far-off nebula. I peer through the telescope and gasp in astonishment at the sight of distant miracles. Somewhere on the other side of the universe, stars are being born. This is where we all come from. This is where we all go.

  The days go by, and still Dad does not die. He is not going gently. I’m beginning to doubt he’s going at all. The thing nobody ever told me about having someone close to you die is that it can get downright boring.

  “My father hung on for ten days after they said it was the end,” says Shannon as she and I stand shivering in the schoolyard on a frigid afternoon as our children romp, stubbornly oblivious of the elements.

  “Christ,” I say. “It’s like when I went two weeks past my due date with Bea.”

  “It takes a lot of work to come into this world,” she says, “and it takes a lot of work to leave it.”

  On Wednesday night, the girls and I have a camping trip in the living room. I cook up hot dogs and we make s’mores in the microwave and we tell stories, and eventually we spread out to sleep together on a pile of pillows in the middle of the floor.

  At 3 a.m., I bolt upright, wide awake, unfathomably unnerved. It’s as if I’d heard a strange sound in the apartment, or forced myself awake from a nightmare, but I didn’t. I get up and check on the children, peck them each on their sleeping cheeks, and stumble back to restless sleep.

  In the morning, there is a light dusting of fresh snow on the ground. Apparently Mother Nature didn’t get the memo that we’re three days into spring now. I somnambulantly move through our routines. Breakfasts are consumed and dishes piled up. Teeth and hair are brushed. The girls and I walk together in near total silence to school, and I trudge back in the unseasonably bitter cold with my neighbor Ciaran, talking about the upcoming school spring break. It isn’t until I’m back home and emptying my pockets that I notice the new voice mail on my phone. “It’s me,” the voice says. “Call me when you get the chance.” Jeff doesn’t need to say any more; the message is already there in the tone in his voice.

  I tell my editor I’m taking a day off, and call Jeff to check in. He and his mother have already been busy with arrangements. He says it happened around 6:30 this morning and that it was peaceful. “We just left the funeral home,” he says. “So now I’m going to grab a latte and hit the cemetery. I have to say that after watching what dying of cancer looks like, I’m seriously hoping for a heart attack.”

  “Oh, totally,” I tell him. “I am all about getting hit by a bus. Which,” I add, “is also my retirement plan.”

  Later, when I meet the girls at the school gate at dismissal time, I have a nervous smile frozen on my face. “Who wants cupcakes?” I ask, transparently. “How about some big chocolate chip cookies?” I take them over to Beans and Vines and sit them down. “Sky’s the limit.
Whatever you want.” The girls look at each other nervously. They know this is Mommy’s stupid way of telling them that Grandpa is dead. So they rightfully exploit my vulnerability and demand cupcakes the size of their heads. I reach across the table and put one hand on Lucy’s hand and one on Bea’s. “Grandpa passed away this morning,” I say. They don’t look surprised. They don’t cry. They are as tired as I am.

  The next day Jeff comes home, drained and in need of his best suit. And this time, when he goes back out to his parents’ house, he’s bringing all of us. We pack our bags and follow him in a somber procession toward the Metro-North train. We bring the pictures the girls drew for Grandpa, to put in his casket.

  Mom ushers us into the house. It’s the first time the girls and I have been there since we came out for the girls’ birthday two months ago. Everything looks just the same, but everything feels entirely different. We hang up our coats in the hall closet, wedging them in among Dad’s jackets. The sight of them hits me sharply. Death isn’t just about loss. It’s about absence. Loss happens once. Absence is the rest of your life. It’s never hearing a voice on the phone again. It’s an empty chair at the dinner table. It’s coats that will never again be worn.

  After Jeff and I get unpacked, I find Lucy standing in the kitchen crying, with Bea fused to her in a hug. Lucy is in a moral crisis. She wants to go to the wake and she doesn’t want to go to the wake. “I don’t know what to do,” Lucy says. “I don’t want to see Grandpa looking all different, but I want to say goodbye one last time. I want to be strong.”

  “You are strong,” I say. “You are so strong. If seeing Grandpa will upset you, then don’t do it. If it’ll make you feel better, then go ahead. Just don’t think you have to do anything for me or Daddy or anybody else. It’s about what you need, okay?”

  Bea chimes in philosophically. “You know Grandpa isn’t really there, right, Lucy? Grandpa is gone. What’s left—that’s just his clothes.”

  She nods. “I do. I’m just not sure I can see it.”

  Bea, meanwhile, has decided she does not want to see what’s left of Grandpa, and I am cool with my seven-year-old skipping the sight of her dead, cancer-ravaged grandfather. Tonight she and I will stay back at the house, receiving a steady stream of roast chickens and fruit baskets.

  Later, as Jeff is straightening his tie, Lucy slips upstairs and dons her black velvet Christmas dress, the one with the taffeta ruffle and the wonky zipper.

  “Are you sure?” I ask as I pull the zipper up slowly and hope that it doesn’t, like this entire month, go completely off the rails.

  “I’m sure,” she says. “I want to be with Daddy.”

  By the time Jeff, Lucy, and Mom return in the evening, Bea is fast asleep and I am in my pajamas watching The House Bunny on TV. Though I had expected that Lucy would return thoroughly exhausted, I had not anticipated this fresh new air of drowsy loveliness about her. She looks older, and absolutely beautiful. She parks herself on the couch and rests her head on my shoulder. “Mommy,” she says with a heavy sigh.

  “How was it?” I ask.

  “It was surreal,” she replies. “Grandpa was there, but he looked really different.” She pauses. “I met the mayor. I talked to people about how I’m playing Prospero in The Tempest at school.”

  She’s grown up so much this year. Part of her childhood, the one that didn’t yet know sickness and death, is gone. “You know,” I say, “you’re always so good and so kind. When a kid is kind, it’s usually because she feels like being kind. Today, you were there for your family. You were kind because you were needed.” She places her hand in mine. “Mommy,” she sighs again, sleepily.

  The next morning, the morning of the funeral, the family goes to the church and files into our pew at the front. Lucy wears her velvet dress again, because we don’t exactly have a closetful of dressy mourning apparel. Bea is in her darkest dress as well. Undeterred by the fact that it’s sleeveless, she resourcefully packed something to wear underneath. It’s a roller derby jersey I bought her a few months ago. Under that prim navy blue frock, she’s sporting a shirt emblazoned with the words MAYHEM FOREVER.

  Bea swings her hair playfully as she plops down between Jeff and me, while Lucy somberly places herself on my right. There’s maturity to Lucy already, but though I know Bea adored her grandfather, she so far seems blessedly less troubled by the loss. We sing hymns and say prayers. Jeff gets up and nervously begins the eulogy.

  “I was so worried about what to say,” he says, “then I remembered, a half hour after this is over, nobody will remember anything I said anyway.” But I will. I’ll remember how he credits his father with teaching him to be a father himself. How he praised his generosity. How he stressed that the support his father gave so freely wasn’t an accident; it was a conscious act. “Love,” he says, “is a choice.”

  Jeff and I learned that the hard way when our marriage fell apart, when we realized that love is either something you actively do every day or it isn’t. We learned it a new way when we reconciled. I can pinpoint the moment I knew we had a real chance of making it work a second time. It was when we’d gone on a big date late last spring. He had told me then, “I used to think the relationship part of my life was settled and I never had to worry about it. Now I think, if you love someone, you have to take it one day at a time. And you have to work at it one day at a time.” Love is an ever renewing contract. It’s a choice you make—and keep making. You make it when you learn to change a woman’s bandages. You make it when you show up to watch your father die.

  Then Dad’s friend Will, his former church organist, gets up to say a few words of introduction before sitting down at the piano. “This was one of Jerry’s favorites,” he explains. As he launches into Brahms’s op. 118, Intermezzo no. 2 in A major, the room erupts in sobs. The music is so sublime; it cannot fail to move the assembly. As tears are streaming down my face, I notice Lucy out of the corner of my eye, wiping her cheeks. I put my arm around her and she buries herself into my chest, shuddering as I stroke her hair. Then, ever stoic, she takes a deep, composing breath before she picks herself up and turns back to face the front.

  I look next over to Bea, and she turns her little face up to me. Her eyes are shining with tears, but she’s smiling. It’s a dazzling vision, seeing her enraptured with the tenderness of the moment. This is my Bea—the girl who can quite literally smile through the tears. This, too, is grief—pain and release and the most peculiar, astonishing sweetness. It’s like a journey to the bottom of the ocean. It’s dark in this place that the rest of the world seldom sees. But it’s full of extraordinary, luminous beauty too. It is, in its own way, a marvel.

  CHAPTER 10

  Spring Breakthrough

  April 2011

  I always play a game when I’m waiting for the elevator. It’s called, “Patient, Caregiver, or Staff?”

  Sometimes it’s easy. The very old, the ones clutching a child’s hand, the ones in concealing scarves and hats and obvious wigs, the ones so fragile they have to sit resignedly on the bench in the elevator for just the short duration of the ride—they’re eliminated right away. Likewise the ones in white coats and hospital ID badges. Then it gets harder. What to make of the gray-haired African-American man in the blazer and tie? Or the stylish 30-something brunette with the Prada handbag? Or the thin, bald Middle Eastern man staring resolutely at the floor? I watch my fellow passengers sizing me up too, observing the way I nod casually to the security guard and unhesitatingly hit the elevator button without consulting the directory. I don’t look like one of the sick, unless you can see the patch of bare flesh on my head. I note whether our eyes meet in wordless fraternity. We always try to find each other, don’t we? Because you’re one of us or you’re one of them.

  I step into the waiting room, and when I take off my coat, my MSKCC uniform—black jeans and my FUCK CANCER shirt—makes clear which side I’m on. I sit, observing another one of us now. She’s a skeletal woman in a wheelchair, being pushed sl
owly toward the restroom. She looks no more than 20. She also looks about 80. There’s another. An old man muttering to no one in particular, “It smells like sickness in here. Mine, mostly.” There’s a Rivers Cuomo type in nerd glasses with a clipped, geeky rhythm to the way he speaks to the woman accompanying him. His wife, I guess. If it weren’t for the uneven patchy tufts all over his head, he’d look like any Williamsburg artist. Maybe even with them. “Not all babies are cute,” I hear him saying, “but ours definitely is.” Now he’s talking about dinner tomorrow, and trying to figure out what he will and won’t be able to eat. Across from me, there’s a young lady in a bright red pageboy wig.

  It’s my first time back to Sloan Kettering since Dad’s death three weeks ago. Outside, midtown is a riot of April beauty—every spindly tree in front of every enormous building is pimped out in a flurry of white blossoms. Inside, I am crunching on a compost cookie from Milk Bar and feeling lots of cancer feelings while I watch Red Pageboy munch a cupcake. By any means necessary, I think.

  I’m back for another checkup, part of my routine maintenance now. I don’t care how pleasant the facility is; I dread going, every time. I hate wearing the gown. It infantilizes me; it makes me a patient instead of just a person. This morning I’d reluctantly told Jeff, “I have to accept the idea that this is a long-term situation for me now.”

  He’d said, “Beats the hell out of a short-term one.” That’s the hope, anyway. I like to think the odds of that being true are getting better.

  Earlier this month, the National Cancer Institute announced that 27 sites across the country, including Sloan Kettering, would participate in its newly formed Cancer Immunotherapy Trials Network—a multicenter research group dedicated to exploring immune system–based cancer treatments and “to select, design, and conduct early-phase trials.” Prophetically for future drug combination patients like me, principal investigator Martin A. “Mac” Cheever noted at the time, “One of the difficulties in developing cancer immunotherapy agents is that the drugs are not likely to do much on their own, but will need to be used in combinations of two or more. The reason for this is that T cells, the immune cells that have the potential to specifically attack cancer cells, need to be selectively activated, expanded in number, and stimulated to survive long-term. It is unlikely that a single compound could accomplish all of these steps, especially as the treatments will also need to override the natural checks and balances our bodies have in place to prevent overexpansion of T cells.”