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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.