The Bone Marrow Queen

By Melissa Difatta

According to an old Japanese legend, a person who folds one thousand paper cranes in

the name of the gods is granted a wish.

Sadako Sasaki was a Japanese girl who lived in Hiroshima during WWII. She

was two years old when the atom bomb devastated her city on August 6, 1945. Sadako

was exposed to the radiation, and when she was eleven years old, she was diagnosed with

cancer.

Sadako’s friend, Chizuko, visited her in the hospital and brought her folding

paper called “origami.” Chizuko told Sadako the legend of the crane. Sadako, wishing

to be healed, decided to fold one thousand paper cranes so that she could be healthy.

Even though Sadako was in terrible pain, she tried to be hopeful as she folded

hundreds of cranes. She had folded only 644 of the paper birds before she passed away.

Preface

“Even the greatest of whales is helpless in the desert.”

—A fortune cookie

The Beginning

Let me show you my body.

When I was born, I was perfect. Ten perfect fingers, ten perfect toes. My strong

heart beat a regular rhythm beneath my flawless skin, skin that was as smooth and

ethereal as that of Michelangelo’s angels. I didn’t cry when I was born, but instead

greeted my existence silently through wide, unblinking blue eyes. I was beautiful. I was

normal. But more than anything else, I was vulnerable.

As I grew older, my body became a record chronicling my life. Every scar has a

story reminding me just how breakable I am. There is a thin, hairless slash sliced across

my left eyebrow from when I fell off of a chair when I was a toddler. That small cut was

the first part of me the world had claimed, but it wasn’t the last. Trace any part of my

body and you will find some flaw. The freckle on my smallest toe. Cracked teeth. The

one-inch scar a perfect slit above my collarbone. The two small puncture wounds in the

small of my back that look like they were created by viper fangs.

These blemishes that mark me serve as my map. They remind me where I have

been and tell me where I am going. And sometimes, they warn me. Like a time bomb.

Tick…Tick…Tick…

It started a few months ago. At first, I barely noticed it. I only felt it when I was

alone, washing my hair in the shower, or tapping my fingernails against a window. The

knowing was in my bones. It hid there, a quiet decay, a terrible secret that whispered

words it knew would wreck me. Your body knows before you do. Eventually, if you pay

attention, you can learn to interpret what it says. Mine was telling me to prepare for

disaster.

Tick. Tick. Tick. Tick. Tick…

I awoke in the middle of the night and my body was slick with sweat. My t-shirt

was drenched so badly it was translucent, sticking to my ribs and shoulders. I heard my

mind excusing it: Your fever has broken. It’s a sign of health. My bones rumbled with

low, amused laughter. I had trouble sleeping that night, but eventually I convinced

myself that the room was too hot, that the blankets were stifling. Night sweats can be

attributed to a number of things.

It was not so easy convincing myself the next night when it happened again. Or

the next night. Or the night after that.

TickTickTickTickTickTick…

Fatigue. Blood. Sickness. The doctors were concerned enough to order a PET

scan, just to reassure I was ok, nobody expected the results to be—

TICKTICKTICKTICKTICKTICK…

ACT I

Because you know I’m always here,

there’s no reason to be fearful,

you know there’s always safety in my arms.

When the wolf howls at the moon,

do not cry, I’ll be there soon.

I’ll hold you and I’ll keep you

safe and warm.

—Andy’s lullaby

May, 2004

Cancer patients are lied to, not just because the disease is (or is thought to be) a death

sentence, but because it is felt to be obscene—in the original meaning of that word: ill-

omened, abominable, repugnant to the senses.

—Susan Sontag

When they tell you that you have cancer, it’s not like it is in the movies. In the

movies, the patient’s family is always waiting in a lonely hallway. It is dark and raining

outside. The family is huddled together, arms around shoulders as though they can

protect their loved one by their very closeness. Then the doctor comes out with tears in

his eyes. He is in great emotional pain as he delivers the hopeless diagnosis. And then

the weeping, the cries to God, it’s all very dramatic. But really, it is nothing like that.

Not in the slightest.

The day I find out I have cancer it is warm and sunny and the hospital is

brimming with sticky, screaming children. I tell the doctor, Dr. Wollman, how tired I

have been the past few months. I tell him about the soaking night sweats. He feels the

painless lump on my neck, the size of a ping-pong ball, writing everything down on his

clipboard in the illegible scrawl that they must teach you in medical school.

We are in a small, cramped room at the Children’s Hospital of Pittsburgh. I have

never been there before. I am a healthy kid—I rarely get sick, have never even broken a

bone.

I didn’t suffer any of the typical accidents of childhood. This hospital visit is very

unusual. I am certain I have mono, and my parents and I wait patiently, wondering when

the doctor will be finished with all of the necessary “precautions” and write me a

prescription.

But he doesn’t. Instead he says, “I think your daughter has Hodgkin’s disease.”

I look at my parents’ faces. My mother’s expression twists involuntarily into a

grimace of horror. She finds my father’s hand without looking, as though they are blind

in a dark room. For a moment, I don’t recognize my father. It takes me a second before I

realize that there is an emotion in his eyes that I have never seen before: helplessness.

“What’s Hodgkin’s disease?” I say in the silence. There was a time I didn’t

know the answer to that question.

“It’s cancer.” Dr. Wollman says. He has said this to many children, but this is

the first time he says it to me. If he hadn’t sounded so certain, so rational, I would have

laughed it off. Ridiculous.

I don’t have cancer. That’s something that happens to other people—poor,

unfortunate people that I feel bad for. This doesn’t happen to me. I’m healthy. Healthy.

I am fifteen when my doctor tells me I am sick. That’s where my memories

begin. Before that, I lived someone else’s life—someone who I don’t talk to anymore,

not because I don’t want to, but because I can’t.

June, 2004

Today is the day of my biopsy. My parents drive me to Children’s Hospital when

it’s still dark. I am fifteen and feel too old for this place. My eyes are bruised with sleep.

An aquarium is in the corner. It’s packed with slimy fish that look unhappy, unwashed.

After hours of waiting, two men greet me. The first is my anesthesiologist. With

his bug-eyes and slender limbs, he looks like a praying mantis. The second is my

surgeon, whose name is Dr. Hackem. I briefly consider if this is a sick joke before I

realize that people don’t make sick jokes at the hospital. The praying mantis gives me a

chart in which I am expected to chart my pain. It’s called a “pain scale.” It looks like

this:

I stare at the pain scale, disturbed. Above the chart reads: “How does MELISSA

describe her pain? MELISSA might use words like ‘Ouch,’ ‘Owie,’ and ‘Boo-boo’ to

relate her discomfort.” When I am in pain, I typically scream obscenities. This is not an

option.

They wheel me down to the operating room on a stretcher. The room is full of

people wearing plastic robes and caps. They gather around me like a cult preparing for a

ritual. As an offering to their gods, they lift me onto the operating table. I am their

human sacrifice. Long metal tools are lined up beside me like soldiers. It occurs to me

now how unnatural this is, that they are going to cut me open here with these shiny

knives. The praying mantis is beside me, preparing my anesthesia. A nurse holds my

hand. My breath comes hard and fast.

“Don’t worry.” The nurse says soothingly. “We have a special medicine for

nervous kids. It’s called magic gas.”

Is this what Hitler told the Jews? The plastic mask is strapped across my nose and

mouth. I don’t feel any different. Then, seconds later, I feel my lips pull into an

unapologetic grin. I begin to laugh, unsure why. It feels good to laugh. Who needs a

reason to laugh? I tell the nurse about praying mantises. Did you know that female

praying mantises bite the head off of their mate after they finish having sex? I am

speaking quickly. It is very funny to me. Someone is counting in the distance, but I am

still laughing.

“Ok, dear, just oxygen now. Bye-bye.”

I am gone.

June, 2004-July, 2007

Remission (n.): the act or instance of remitting; forgiveness or pardon, as of sins or

crimes; a lessening or abating of pain; a relatively prolonged lessening or disappearance

of the symptoms of a disease.

I spend the next year undergoing intensive chemotherapy and radiation. I am one

of the fortunate and am able to do most of my treatment as an outpatient. I go to school,

though I miss every Friday morning in order to go to the hospital.

My hair falls out. I wear a wig or a hat to cover my baldness. It’s a hard thing to

be a bald girl in high school.

Things go well for me. Like I said, I am one of the fortunate. I get better.

My body heals. My hair grows back.

But I am not the same.

August, 2007

After high school, I am ready to leave my old life behind. In August I pack my

life into cardboard boxes and drive six hours away to a small liberal arts college in

upstate New York. The place is perfect. It is far from my parents, and close to Andy, my

best friend and boyfriend of two years. It is a place to heal.

I am only at school for a month before I come down with a brutal fever and am

rushed to the emergency room. After reviewing my medical history, the doctor orders a

few chest scans, just in case. When she comes back into the room it is with a heavy quiet

that I have learned to distrust.

“Where’s your mom?” The doctor asks. She has celery green eyes and wavy dark

hair that curls against her shoulders.

“She went to back to my dorm to grab my homework. Why?”

The doctor looks hesitant for a moment before she speaks. “I have the results of

your scan. Maybe we should wait for your mom before I—”

“What is it?” I say sharply. She has made a mortal mistake. People don’t wait

for your mother when it’s good news. “Please, just tell me.”

She draws her mouth into a tense line as she examines her clipboard. “The

scans—show a mass in your chest. It looks suspicious. Considering your history, I’m

going to have to believe that we are dealing with a relapse here, and I would recommend

that you go back to Pittsburgh to get further testing done.” She pauses. “I’m sorry,

honey. Are you ok?”

“Yeah. Yeah, yeah, I’m fine.” I say, my voice betraying me. It cracks in the key

of E-minor as I look at my hands, feeling the texture of my throat turn to sandpaper. “I

just need to be by myself for a second, I just, I just need a second…”

“Would you like me to call your mom?”

“No…she’s driving…she’ll…” Get into a car crash. Sob hysterically into the

phone. My breath spasms through my body like a bucking animal. Hot, salty tears trace

the contours of my cheekbones and my lungs constrict and crackle in my chest.

I have relapsed. How? I was so certain it would never come back. In the back of

my mind, I hear my Oncologist’s voice: Hodgkin’s disease is one of the easier cancers to

defeat—unless we are dealing with a relapse, but that’s a whole different story.

I feel helpless. My body is just a body, and it has mutinied against me.

November, 2007

In myelodysplastic syndromes, the blood stem cells do not mature into healthy red blood

cells, white blood cells, or platelets. The immature blood cells, called “blasts,” do not

function normally and either die in the bone marrow or soon after they enter the blood.

This leaves less room for healthy white blood cells, red blood cells, and platelets to

develop in the bone marrow.

My fear is confirmed. It is a relapse.

But things are worse than I thought. Not only has the Hodgkin’s disease returned.

The doctors perform a test on my bone marrow and I am diagnosed with a second

illness: Myelodysplastic Syndrome, a form of Pre-Leukemia.

“How did this happen?” I say weakly. A cold hand digs into my heart until I

bleed. For the first time in my life I think I might die.

“It’s a rare condition,” the doctor says, “that sometimes occurs after a patient has

received large amounts of chemotherapy.”

“I got this because of the chemo?” I say, unable to understand even as I say the

words out loud.

“Yes.”

And then he tells me. I need a bone marrow transplant.

Act II

October, 2007

“Mom—since I have to get a transplant, can I have a puppy?”

Those are the first words out of my mouth once I receive the news. I have always

loved animals, but my mother has never shared my obsession. She likes things to be

clean, orderly, and quiet…everything that a pet is not.

After my first chemo treatment, Andy and I tell her that we’re going out to lunch.

Really, we drive to the animal shelter. We have decided that a puppy will be too difficult

to care for while I am sick, and we look at the cats instead. There is a litter of playful,

eight-week-old kittens with glossy black fur that we are immediately drawn to. A woman

fills our arms with several of the baby kittens and leads us to a small room so we can play

with them. I am delighted by the writhing tufts of fur. I massage their delicate bird-

bones, letting them nibble my finger and lick my nose with their rough pink tongues.

While I play with them, Andy brings in another kitten from the litter. He holds it in his

palms, one hand cradling its head and the other cupping its bottom. Its soft belly is open,

exposed, and vulnernable. The kitten is much smaller than the others. She is the only

female in the litter. She blinks one eye open sleepily.

“Melissa—” Andy begins. But he doesn’t need to say anything else. Our eyes

meet and I can see that we have both fallen completely in love.

To her credit, my mother is surprisingly calm when we bring the kitten home.

You can’t yell at a cancer patient holding a kitten.

“She’ll keep you company when I’m away at school.” Andy says later, as we

play with the kitten on my bedroom floor. “She’ll take care of you.”

“We’ll take care of each other.” I say with a sigh. The chemo is beginning to

affect me. The kitten—whom I’ve named “Bella”—and I are both exhausted. We take a

nap on my bed, she curled into the c-shape curve of my neck. I snuggle against her warm

fur, lulled by the fluttering pulse of her heartbeat.

We’ll take care of each other.

January, 2008

The week before I am admitted into the hospital for the transplant, my bone

marrow team holds a meeting with my family in the Oncology conference room. They

spend an hour going over a release form that lists the various ways that the transplant can

kill me. Kidney failure. Blood loss. Heart failure. Lung failure. Graft versus Host

disease. After all, my body is just a body. There are ten pages of ways that I can die,

ways that I have never even thought of before. If somehow one of these complications

does not kill me, there remains the likely possibility that the donor’s bone marrow won’t

graft to my body at all. Then I would die.

There are seven different Oncologists at the meeting. My “team.” The team of

heroes whose job it is to save my life. They don’t look like heroes. They look like old

men. A slight, polite Indian man named Dr. Goyal is my bone marrow specialist. He has

soft brown hands that feel like a folk song. I ask him to give me an honest answer—what

are my chances of surviving this?

“Every case is different.” He says after a long silence. “It’s important not to

dwell on statistics. You are not a statistic. But this procedure is very complicated. You

are a unique case; not only do you have sick bone marrow, but you’re also fighting a

relapse of Hodgkin’s. We’ve never treated someone like you before. Given these

different factors, I’d say the chance of you surviving the transplant is less than 50%.”

I meet his warm, mahogany eyes, and know that he is being generous in his

estimate.

My chance of surviving the bone marrow transplant is fifty-fifty. My chance of

surviving without the transplant is zero.

I sign the papers. It’s not bravery. It’s survival.

February, 2008

The praying mantis waits unmoving. Its front legs are held up together in a

position that mimics prayer. These forelegs are equipped with sharp spines that grasp its

prey. When the prey approaches, the mantis bites its neck, paralyzing it. The mantis then

devours its prey, eating it while it is still alive, starting with the insect’s neck.

The day of my bone marrow transplant, Andy brings me a cardboard crown from

Burger King. He has scratched out the words “BURGER KING,” and writes, in black

sharpie, the words “BONE MARROW QUEEN” above it. I wear it proudly on my naked

scalp. The donor’s marrow is brought in a plastic bag. They hang it from my I.V. pole

and pump it into my body.

“That’s it?” I say, dazed. “It looks like a bag of Ketchup.”

I fall asleep.

They take bits and pieces of me and store them in glass phials, neatly labeled with

my name and birth date. Tubes of warm blood, a chunk of skin, a bit of tissue. I am all

over the hospital.

My blood is in all of the wrong places. I spend hours sucking it out of my lungs

with a plastic tube. My urine is the color of cranberry juice. I throw bloody tissues into

the wastebasket and there are crimson smears throughout my sheets. Everywhere I look

there is blood, but the doctors keep telling me I don’t have enough of it. I get

transfusions every day—sometimes pale yellow platelets, other times soupy RBC’s. My

heart pumps this blood that isn’t mine, and after a while it doesn’t seem strange at all.

When my blood-cell count is finally strong enough that I can leave my room for

small periods of time, I am encouraged to walk laps around 8 North, the cancer ward, to

get some exercise. I have to wear a mask and I can only walk once or twice around the

floor before I grow too tired. When I am out of my room, I see other sick kids shuffling

through the hallways, tugging along their I.V. poles, limping under the weight of

invisible chains. I don’t speak to them. When you’re trying to escape from Hell, you

don’t make allies with the damned.

“What is your pain on a scale from one to ten?”

This is the question I am asked several times a day. What do these words even

mean? How can they expect me to quantify something like that?

What does it mean to be a three instead of the five? What is a ten? My mouth is

full of open, bloody wounds and I cannot speak, swallow or spit. They have killed an

entire body system of mine with a lethal dose of chemotherapy. My skin molecules are

molting, peeling off in dark strips, then crumbling away like dried carnations. A nine-

year old boy hangs himself in the ICU. The teenagers on 8 North mix their painkillers,

desperate to simply end the pain. There’s a shortage of platelets and children are

bleeding from their gums, their ears, their eyes. I cannot escape my body. My body is

just a body.

“What is your pain on a scale from one to ten?” The nurse repeats her question.

“A five.” I say. “Maybe a five and a half.”

During the course of my transplant, I will make friends with many of the nurses,

janitors, and other members of the staff that frequent my room. Kathy is the first. She is

a PCT (primary care technician) and works the night shift. She is a frazzled redhead who

loves to talk about politics and her goodfornothin’ teenage daughter. Her job is comprised

of three main tasks—to take my blood pressure, record my temperature, and measure the

volume of my urine. Any concept of self-consciousness I might have experienced over

the fact that our relationship is based on the quantity of my piss is quietly dispelled. I had

signed away all freedom of privacy when I agreed to the transplant, and that includes the

freedom to pee in peace.

Andy is my lifeline. He has taken a semester off from college and is at my

bedside every day. I am ashamed of my appearance—my baldness, the unnatural sienna

color of my skin after I contract Graft vs. Host disease. I am somehow both bloated and

skinny, there are purple half-moons that paint the hollows beneath my eyes. My lips

have erupted into bloody, volcanic sores. Andy holds my hand and tells me I am

beautiful. Every twenty minutes, he crushes blocks of sterile ice that I spoon into my

mouth. I let the ice melt down the back of my throat, groaning a little in both pain and

relief when the cold meets the open blisters. He talks to me even though I can’t talk

back. Occassionally, he’ll ask me a question and I’ll answer it on a pad of paper, or he’ll

make a joke, and I’ll write out “HA HA HA!” He has cleaned up vomit, urine, blood,

and every other body liquid imaginable that has leaked out of me. I am embarrassed, but

he whispers that it is ok. At night, he reads to me, or makes up lullabies to sing to me

while I am asleep. Throughout it all, he holds my hand.

I think to myself, even if I do die, at least I have loved.

Hospital bedding frightens me. When I lay down in it, I wonder how many

people have died in it, and whether or not there are bits and pieces of them still clinging

to the sheets. Nurses change the sheets every day, but they still feel dirty, still have a

metallic odor that nobody else can smell. Brown and yellow stains splatter across my

pillowcase ominously. I flip it over so I don’t have to look at them.

I begin to hear music every hour of the day.

“Would someone shut that off?’ I tell my mother one day.

She looks at me like I am a fog, like she can barely see me. “Shut what off?”

“The music.” I say, irritated. “Can’t you hear it?”

She can’t. Nobody can. As they give me higher doses of painkillers, the

hallucinations increase, until I think that I’m a Spice Girl. When my Uncle Jim comes to

visit me, I serve him food that exists only in my mind.

“Would you like some orange juice?” I whisper, pouring an invisible pitcher.

“Or some coffee?”

I don’t remember saying these words, but I remember the look on my uncle’s

face. I have never seen a grown man look so terrified. Maybe he was thinking of his

own daughter, my four-year-old cousin Riley, whose risk of having cancer someday

increased tenfold the day that I was diagnosed.

The hallucinations are the worst when I am in the ICU (Intensive Care Unit).

This is where the sickest kids are. A few days into the initial chemo, my body breaks

down. My blood pressure plummetts one night as my heart begins to fail. It is late at

night, and there is chaos as a crowd of doctors rush me, where, somewhere.

I can separate my mind from my body. The ghost part of me steps out from the

rotting, diseased part, and hovers serenely above the physical. Painlessly. If only I

could be in this state all of the time. I open my eyes as wide as possible…I watched a

television show once that said the blind adjust, that closing your eyes makes you feel

other senses stronger. I don’t want this. Don’t let me feel pain anymore.

Mybodyisjustabody.

Mybodyisjustabody.

Mybodyisjustabody.

This thought repeats over and over in my mind until I am yanked back into my

physical self. The pain is returning, slowly, first around the edges of my face, my

hairline. Then it storms my cheekbones, moving inward. Tears that I do not feel smother

me. I am choking. And I know it’s over.

I have ripped the I.V. needle out of my skin and dark, dark blood gushes from my

veins. I gasp in dark breath like I am drowning. Dark hands try to hold me down, but I

am much too strong.

“Honey!” I hear a voice say. Several nurses are crushing my bloody arm,

inserting the needle again. “What is your pain, from one to ten?”

What? The push of morphine. Electric. Free. Someone else in front of my face.

A boy? He looks familiar.

So, so worried. Familiar.

“Melissa?” Worried. “Don’t you know who I am?”

I stare at him. Familiar?

“It’s me.” He lays a trembling hand on my shoulder. “Andy.”

I cannot stay conscious. As violently as I awakened, I collapse back into

darkness.

March, 2007

I stay in the ICU for two weeks, and it is the most hellish part of the entire

transplant. I am not allowed to eat or drink for three days while I am on the blood

pressure medication. When they put me in diapers, and I lose the final shreds of my

dignity.

The doctors are worried. They tell my mother and Andy that things are not

looking good. They think I will need to be put on life support—my lungs can’t breathe

on their own.

“Is she going to die?” My mother asks the doctor.

It can go either way.

I don’t remember the whole thing clearly. My memory is a jumbled mess of

darkness, pain, and misery. I do remember the little girl who is in the room beside me.

She is also getting a bone marrow transplant. One day, her mother begins to scream,

wailing like an animal, like a limb has been separated from her body. Her grief is alive—

it has a color. It thrashes and claws at her until she collapses helplessly against a wall.

It can go either way.

Beep. Beep. Beep. Beep.

Nightbecomesdaybecomesnight.

they strap on an

oxygen mask that

breathes for me in my

nightmares i can taste i

can smell a thousand

nameless doctors all

wearing the same face

this is the rotting

belly of

disease this is hell.

in—

hale

ex—

hale

in—

hale

ex—

“Please. Please, I’m begging you—”

Beep. Beep. Beep—

“She’s not going to make it.”

(it is always dark here)

My body

is just a body.

St. Anthony, glory of the Friars Minor,

St. Anthony, ark of the testament,

St. Anthony, sanctuary of heavenly wisdom,

St. Anthony, destroyer of worldly vanity,

St. Anthony, conqueror of impurity,

St. Anthony, example of humility,

St. Anthony, lover of the Cross,

St. Anthony, martyr of desire,

St. Anthony, generator of charity,

St. Anthony, zealous for justice,

St. Anthony, terror of infidels,

St. Anthony, model of perfection,

St. Anthony, consoler of the afflicted,

St. Anthony, restorer of lost things,

St. Anthony, defender of innocence,

St. Anthony, liberator of prisoners,

St. Anthony, guide of pilgrims,

St. Anthony, restorer of health,

St. Anthony, performer of miracles.

St. Anthony, deliver us.

St. Anthony, protect us.

St. Anthony, pray for us.

Let Us Pray.

March, 2008

I get better.

They say it is a miracle. My blood pressure returns to normal. The fluid around

my heart and lungs begins to drain away. I can breathe. Chance is in my favor this time.

This time.

When I return to 8 North, Kathy is deeply upset. After she begs me to help

her setup a Facebook account, she sees that her daughter is “in a relationship” with an

unknown boy.

“Who is he?” Kathy exclaimed, clutching at my laptop.

“I don’t know.” I said. “I don’t think you can access his page—he’s not in your

network.”

“Are you kidding me?” She hisses, randomly clicking the site, cursing it, doesn’t

it realize that she’s this girl’s mother?

After a while we give up, and we look up a YouTube video of a dog that can

walk using only its back legs. She shrieks with laughter. I say that I like the video a lot,

but really it’s just ok. The dog is just a freak. A poor, sick freak.

The female praying mantis is widely known for her particular habit of biting the head

off her partner while they are mating. This cannibalistic act was once believed to be a

regular practice. However, it now seems likely that it is rarer in female mantises in the

wild than in mantises kept in a cage.

When you don’t have an immune system, infection is the enemy. All of my food

comes wrapped in plastic, and I can’t eat anything unless it has been made within the past

twenty minutes. The list of things I am not allowed to have is endless: no fresh flowers,

no balloons, no fruits or vegetables. Blankets and bodies must be washed regularly. No

stuffed animals. The younger children are only allowed one “security item” and they

have to keep it in a zip-lock bag.

When my counts are low, doctors and nurses wear neon-yellow robes, masks, and

rubber gloves when they enter my room. I am amazed by how fragile I have become,

how a germ that I can’t even see can deal me a fatal blow.

Only Andy and my parents are allowed to visit me. Visitors are a source of

infection. This doesn’t bother me as much as you think it would, as I am in blissful

unconsciousness most of the time. When I am awake, Andy does his best to entertain

me. We make our way through the hospital’s DVD collection, and when we exhaust

Disney, Andy brings me horror movies from Blockbuster. The nurses are horrified when

they discover me watching Hannibal. They don’t think it is good for my blood pressure.

I remind them that my blood pressure is too low anyway, and they leave me alone.

Sometimes, I try to read. This proves enormously difficult. I reread the same

page over and over again and find that I reread the same page over again and then I’m

asleep by the end of the sentence.

Act III

There are no strict rules for building an altar. It may be simple or complex, indoors or

out; it may serve a multitude of purposes, or be focused on just one, such as healing.

Things I put in my alter:

1 ceramic turtle

2 small stones

1 Egyptian headscarf

1 rubber “Gumby” figurine

7 postcards (all from you)

3 prayers

1 post-it note

1 broken pair of opera glasses

2 Catholic saints

1 bamboo plant (now dead)

1 cracked seashell

1 notebook

1 pen

April, 2008

Andy paints sunflowers across my window. I help him for minutes at a time

before I get too dizzy and fall back asleep. He paints my face bursting through a field of

those golden flowers, awash with purples and violets and blues. It looks like stained

glass. He has transformed my hospital room into a holy place. A place of prayer.

The bone marrow has grafted to me. I am reborn. Like a toddler, I am learning to

walk again, on weak, unsteady legs. I begin to eat soft foods, and a few weeks later, solid

food. My body begins to make its own blood cells and the daily transfusions are given to

me less often.

The day comes when I am able to go home. I have been isolated in the hospital

for two and a half months. I am not strong. My body is war-ravaged, and I resemble a

holocaust victim. But I am on my way to recovery. Against the odds, I will get better. I

have survived. It will take months, even years, but I will live a normal life someday.

My body is just a body. But my will is greater than myself.

Epilogue

“The more the marble wastes, the more the statue grows.”

—Michelangelo

Put your mouth to my ear, and I can hear the ocean.

Now

The summer after my transplant, I slowly regained my strength. I transferred to

the University of Pittsburgh in order to be closer to Children’s Hospital for my frequent

check-ups. I received more chemotherapy, more radiation. Then, in November 2008, I

got the news that I had been praying for: my body was clean, with no evidence of disease.

Finally. After years of struggle, it was over. I could feel it. I felt free. I began to

live my life again—hesitantly at first, like I couldn’t quite believe I could be normal. I

attended classes, I hung out with my friends. I made plans for the future.

A few weeks ago, even as I was writing this memoir, I began to sense that

something was wrong. It was the ticking again. Terrified, I tried to ignore it. I was

clean. The PET scan results had told me that only a few months earlier. But the whispers

of my bones continued their relentless hiss in the corners of my mind. I was getting very

tired again. I had two night sweats. I felt a small lump on my neck.

Tick…Tick…Tick…

Upon finishing this memoir, I have found out that my cancer has relapsed once

again. This time, I am more frightened than I have ever been before. Despite this, I

refuse to give up. I will not let cancer take me. I will beat it. I am grateful that I have

the support of the amazing people in my life to help me get through this. Together, we

will build alters. We will fold paper cranes. We will sing lullabies. We will pray to the

Saints. We will sleep with kittens.

We will fight this disease with the only weapon we have. Love.

I will get better. I will.

I am the Bone Marrow Queen.

A few more dedications:

To Dr. Wollman, Dr. Goyal, and the rest of the oncologists at Children’s Hospital

of Pittsburgh. To the nurses, social workers, and staff members on 8 North. To Dr.

Cohen for telling my mother to get me a cat. To Robert for putting up with my daily

harrassment during the entire two months of my transplant. To Alysa for keeping me

company in the hospital. To Julia for sending me letters and folding me cranes. To Bryan

for being extremely tall and otherwise a decent guy. To my family who has done

everything for me. To all of the Polefrones. To Jenny, Joel, Griffin, Kara, Bess, Krista,

Elise, and the many, many others who have been so incredibly supportive of me

throughout this journey. To every person who has sent me a card, package, or letter—

I’ve saved all of them.

And to my bone marrow donor—whoever you are, wherever you are—for my

life.