I Wore the Ocean in the Shape of a Girl (20 page)

The index card was in a red book that my father brought back with him from Brockton, when he went to see Tommy in April 1982. When my relatives told my dad he would need to come now. I remember my voice, my asking, like smoke, to go too. I didn’t go. In a bar with my friend Sophie, I said, “He’s not going to die.” And Sophie said, “I know it’s hard.” She was wearing my red crocheted sweater. She said, “Look. He’s a baby, he’s got leukemia. It spread.” Her face was tight. She wore purple lip gloss. The smoke was faintly suffocating. The room, an old train car, was warm. The band had gone on break, but the recorded music was loud enough that she had to raise her voice. She said, “Will you think about it for a minute?” She said, “Kelle, he’ll die, sooner or later, he’s going to die. Don’t you see that?” I said, “You’re wrong. Everyone’s hopeful. The doctors, my relatives.” Sophie said, “I know.” We drank in the train car almost every night. When we didn’t go, we missed it. Sometimes we went to drink at the Why Not first, so Sophie could look for the man with silver hair. He’s the one who drove me home to my parents’ house when I broke my foot at Sophie’s holiday party, the year I gave Tommy away. Too old for her, but she’d had some kind of crush.

My dad came back home from Brockton with the red book,
You and Leukemia: A Day at a Time
, a freckled boy on the cover hugging a snowman. Inside was the index card. He brought back a photo of Tommy at home with my uncle. He’d just come home from the hospital. There were red lines drawn on his head, like a map. He was asleep in my uncle’s arms. My uncle was leaning back on a couch, holding my son, smiling a little for the camera, smiling to have him in his arms. In another photo, Tommy is sitting
on the lap of Nana Smith, and my aunt is beside him. An Easter basket is on Tommy’s lap. Everyone is laughing. Something really funny has just happened. I think the person who took the picture has made them laugh. Tommy is so thin, he looks like a baby rescued from a concentration camp. His smile, though, is huge. It doesn’t look like it could be any bigger, as if he couldn’t be happier. The Easter basket means it’s Easter, April. That he’ll be dead at the end of May.

He has his first birthday in the hospital. March 17, 1982. When he was born, the nurse in the delivery room told me, “He’ll have green birthday cakes the rest of his life.” I don’t know if he ever had a green birthday cake. But Nana Smith brought corned beef and cabbage to the hospital. She brought her best silverware. That’s what I heard.

I read the red book. Adriamycin is a chemotherapy drug. They gave my son chemotherapy.

“Jan 1, 2, 3.”

Are these the days he was given Adriamycin? It’s given as an IV shot. Adriamycin, ADR, is an antibiotic. It stops cells from growing, so they can’t divide. Stop cells from making DNA. It can hurt your heart if you get too much, but no one knows how much is too much. The red book says to tell your doctor if you have trouble breathing. Other side effects are nausea and vomiting, bone marrow depression, hair loss, sore mouth, burning pain where the needle went in if any ADR leaked out. The book says you will probably get only one or two of these. How does a baby tell his doctor he has trouble breathing?

Is your mouth sore? Let me kiss your sore mouth.

My dad said that Tommy was sick, vomiting, and my aunt was with him all the time. My dad said Tommy followed her everywhere.

The reason that there is no period after the first “G” in “G T.G.”
is that the “G” is really a “6.” The rounded handwriting confused me. “6-TG” is “6-Thioguanine.” As it says on the index card, it’s a pill. How did my aunt make the pill easy for him to swallow? It also stops cells from making DNA, so they can’t divide. The side effects are bone marrow depression, loss of appetite, nausea and vomiting, and sore mouth.

There is nothing else on the card. There are no more cards. There is no handwriting in the book.

All I have is the red book. A woman with freckles holds the freckled boy on her lap. She’s wearing bell bottoms. The boy has one arm around her shoulder, her neck. His mouth is a little O, so I know he is speaking. This page says, “All of us want to live a long time. And we want the people we love to live long lives.” On another page, the freckled boy is bald. His mouth is an O again; he’s talking to a girl in braids and knees socks. Behind her back, she holds one of her hands with the other. The red book says, “It’s OK to be bald. Queen Elizabeth the First of England was bald, and she was a very great ruler.” A baby doesn’t care about being bald. He doesn’t know what a ruler is.

To find out if you have leukemia, the doctor does a bone marrow aspiration, which looks a lot like a spinal tap. Black towel with a circle cut out. In the drawing, a child’s diaper is held up with giant pins. The shinbone of the baby is shown, a dark rectangle on her leg. The book says that sometimes they use the shinbone in tiny babies. Is my baby a tiny baby? The book says, “You will have more bone marrows in the weeks, months, and years to come. Many people with leukemia think the bone marrow test is the worst thing about having leukemia. It hurts to have some bone marrow taken out of you.” Aspiration is like “sucking it out through a thin straw.” It hurts, the book says. Even though the boy’s back is numbed. The baby is numbed. The book says that bone marrow “is even prettier than blood.”

Another page is titled “Environmental Factors” and has a DNA model, a drawing of octagons, some black, some white, some dotted lines that connect octagons. The book says, “Most relatives of people with leukemia never get it themselves. Other things besides genetic factors must play a part in causing leukemia. These other things must come from the environment. All of these environmental factors have one thing in common: they can change the structure of DNA, and DNA is what your genes are made of. DNA contains the rules that your cells live by. All the environmental factors can change DNA, so they can probably change the rules.”

Other things: radiation from an atomic bomb, chemicals, and viruses.

The book says, “Nobody caused your leukemia, nobody could have prevented it.” I don’t know what the book means.

On another page, the boy unzips himself.

My male doctor puts two fingers from each hand in the valley of each of his hipbones, rests the pads of his fingers on the creases made by his tan Dockers. “Here are your ovaries,” he says. I’m imagining my ovaries where his index fingers are. Imagine them shrinking from his fingers, the cotton. I’d thought this was just a precaution, going to a cancer doctor, walking past the chemo sign pointing to the right, happy with my best friend taking the time to accompany me. “You’ve got a fifty percent chance of ovarian cancer,” he says to me. He’s got my CT scan, blood work. Something drops from my throat into my stomach. “You have to have surgery now,” he says, “as soon as we can schedule it.”

When we leave his office, walk down the hall, the doctor is in a little alcove office with a nurse. He talks to the nurse about someone else as we pass by. “If she won’t have the surgery, she’ll die. Tell her she’ll die.” Long after this day, I’ll realize he never said what other thing I might have from my symptoms: a stage 4 mass, elevated ovarian cancer test, enlarged aortic lymph node. The aortic news is its own terror because if there’s cancer it means cutting me open to there, to my heart.

My friend must have done some talking to the doctor—we were in the room together. I remember when our smiling stopped, the smile still on my face but fear freezing it over. So shocked I for
got to stop smiling. Like when the manta rays came toward me in an invasion of black wings in the ocean, and my dad said, “Run,” but I tried to act cool, go slow. For whom? The manta rays? The people on the beach? “Run!” my dad yelled.

My friend is the practical one. But I don’t remember anything she said after the doctor said “fifty percent chance.” Later, she showed me a poem she wrote about the visit, and it was all about my hair, how much she loved it. She was afraid I’d lose my hair; she’d lose me. It seems sweet, right? But I was mad. I thought, “Don’t start eulogizing me. Don’t chronicle my death.” I love her; she’s my dear friend, but I don’t want this to be the beginning of my death. My death is not a poem. I thought of my son, how he’d had to turn toward the chemo sign, die. A baby. I think he is a thousand times more brave than me. I am afraid of pain, of what I’ve read of the treatment for leukemia, the hollow needle that sucks out bone marrow from the spine. My son was able to get the leukemia into remission, and then it turned to spinal cancer. And he got that into remission too. And then it went into his brain, and then people said, “He’s only a baby.”

He had a bump on his forehead like an orange, like the orange inside me. But his was cancer, and they couldn’t get it to go away. I’m afraid of pain, of suffering, but I’ve talked to God, I’ve asked. I said if my child had any pain, give it to me. Give it to me. Let me take it. And I waited. But now I think that maybe there aren’t any trades. That no one has to suffer to save another. And that if God has inscribed the name of my son on the palm of his hand, wouldn’t he have kept him from hurting?

It’s 2004, the year all four hurricanes come to Florida. I live at the top of a pink apartment building built in the 1940s. The roof right over my ceiling. Eighty-mile-an-hour winds tear the huge, ancient tree beside my dining room window out by the roots. I used to sit at my window to see the birds high up, at my elbow.
So that we really seemed to live in the same world. They weren’t scared of me on the other side of the glass, playing their music. The tree falls sideways, along my building, rather than in, on me. Rather than turning my apartment into a room of flying glass. I’m afraid the roof will come off, and the delirium of Dorothy, of flying through the air, will be my death. I hide in the hallway between my rooms—close the bathroom, bedroom, living room doors. Crouch down. For once it seems stupid to be alone, with a dark machine ready to hurl me into the trees.

My surgery has to be rescheduled when the second hurricane is near. I drive to the coast, most of the beach sand washed away in the first storm. The national seashore empty, winter coming. I walk for miles without seeing anyone human. The sand strewn with boat boards and rusted nails, bottles, palm tree trunks, and when the tide comes in, it brings more. At high tide, there is nowhere to walk, boards flying toward me on the incoming waves. So I climb a little deck by a house abandoned to the vultures. And the water climbs around the deck, though I keep dry, until it seems as if I am on a boat myself, surrounded by water on three sides, dune on the other. And I feel safe there on the ocean. My heart stops panicking, stops imagining a knife, the cold cutting of my knit skin. Stops imagining chemo, what kind of burn that is. My hair on the floor like a recruit’s. Soft body in a grave, under the dirt. Instead it seems as if the ocean reminds me of what remains. It carries me like an early relative from the first days.

Before the surgery, my heart beats so fast—like one of those little dogs that seem motorized, a hummingbird, some terribly quick thing. So both of my nurses compliment my hair, play with the curls. I feel the tenderness of their hands, their knowledge of my fear. And for once I don’t pretend I want straight hair. “I like it too,” I said. I want to keep it. I liked everything then—all the mysteriously named items inside me. The ones a nurse listed on a
form, made me sign my permission that they could take any and all if I had cancer. So, I might wake up empty, not even knowing what I’d had to begin with. Emptied out like a suitcase. Even if I’m broken, I want them, I want all my broken things.

During surgery, the doctor calls my dad from the phone in the operating room. I’m still cut open on the table. My parents in the waiting room with my best friend. He said, “There’s no cancer.” In the waiting room, my dad calls my aunt and uncle, Julia and Mark, on his cell. “There’s no cancer,” he tells them. Julia cries.

When I start to wake up in the recovery room, a nurse is right beside my ear. I hear her whispering before I can see her, “There’s no cancer.” As if she wants her words to be the first thing I hear when I come to, so I don’t have to wake up scared.

It turns out the manta rays, though related to sharks, aren’t even dangerous. Toothless and acrobatic, they can fly through the air, but can’t hurt you. The mass had been endometriosis, like a ball of yarn twined around my insides, wound to the size of an orange around my poor right ovary. So the doctor scooped it all out, took my strangled ovary too, sewed me up. The other symptoms were caused by all that twisting stuff, and after the surgery, go back to normal.

On the phone in the operating room, the doctor said, “I’ll respect Kelle’s wishes and not do a hysterectomy.” I’d written the doctor a letter before my surgery. In the letter, I wrote, “If there’s no cancer, I do not want a hysterectomy. I want to have another child.” I’d thought a doctor would pay attention to something in writing, instead of my words in the air. I knew he thought that if I wasn’t going to use my uterus, he’d want to spring clean me like a closet, send me into surgical menopause. But he’d listened to the letter.

I was forty-three years old, unmarried, and working in a homeless shelter. But I didn’t have cancer, I wasn’t dying, and I had one
ovary left. One ovary is all you need to make a child. Once I was walking down a road in Virginia at three in the morning. The blue mountains were the same color as the night, light came from the stars and little roadside lanterns to my left. To my right, I felt the presence of a live being moving. It was two horses, hurrying to walk beside me, two dark horses keeping me company on their side of the fence. The hills all around me. Mostly I am insensible of trees, their states and bruises, their lack of disguise. Their willingness to reach out for the things that keep them alive.

I’d fallen in love in 2001, quit my job. Got engaged and moved to New York. But it didn’t work out, and by February of 2002, I was back in Orlando. Unemployed. The chimes left up in the wind outside my window sound like a dog constantly jangling its chain. Someone said the homeless shelter needed a new grant writer. During the interview, my license plate disappeared. At the front desk, the receptionist said, “You’re late.” I sat in a plastic chair in the waiting area for the homeless. A woman asked me, “Can’t you get a better job than this?”