Thank you Dr. Z. There is a quote I
saw recently that seems to resurface in times of tragedy, usually attributed to
everyone’s favorite neighbor from PBS, Mr. Rogers. It goes, “When I was a boy and I would see
scary things in the news, my mother would say to me, 'Look for the
helpers. You will always find people who are helping.'” It’s true. There are
people who instead of running away from trauma, run towards it. They run into
pediatric cancer wards and accident scenes, run towards suffering, and make it
their life goal to alleviate it. It’s an honor to meet that kind of
person, much less literally owe my life to them. Thank you to Dr. Zimbelman,
as well as Dr. Hugate, Dr. Jewell and the rest of my oncologists, nurses, social
workers and nonprofit workers, for saving my life and my limb and letting me
witness the kind of steely compassion that makes us have faith in the world.
My journey into this world started
just about two years ago, during my freshman
year in college. My shoulder had been inexplicably hurting for about six months
- it started with sudden throbbing and waxed and waned to various levels of
shooting pain. I was having low grade fevers and night sweats. Without even
noticing it, I slowly acclimated and adjusted to having a shoulder that didn’t
work. I slept on my left side and I learned to take off my shirt with one hand
and peel it off my dangling right arm. I used the other arm to put my shampoo
back on the shelf. And brush my hair. And pick up books off the floor and sling
my backpack on. I started giving up on things. I chose the bottom bunk, since I
couldn’t climb up the ladder to the top. I canceled the surfing lessons my dad
had got me in San Diego because it hurt too much to swim. I dropped out of my
Swim Fitness class because I couldn’t continue the sport I have loved since I
was six years old. I had gone to a chiropractor, a physical therapist, and an
orthopedic surgeon, and nobody could tell me what was wrong. But by October of
2014, I could no longer pretend on any level that my body was okay. My hand was
shaking so badly I couldn’t hold a pencil to do my homework. It looked and felt
like someone had crammed a grapefruit into my shoulder socket- the skin was
red, blistered, and hot and the joint crackled with fluid. I finally decided to
go to the ER, and within 24 hours I was diagnosed with Ewing’s sarcoma, a rare
and aggressive bone cancer that had already formed into an 8 centimeter tumor
on my scapula. This was my first encounter with one of my Mr. Rogers’ helpers - Dr. Bengston, who had the hellish
job of telling a nineteen-year-old she had cancer and then calling both of her
parents and delivering the news that their only child had just received a
life-threatening diagnosis a thousand miles from home.
12 hours
later, I was on a flight back to Colorado. My mom and my aunt picked me up and drove
me straight to the ER of Presbyterian St. Luke’s Medical Center.
My aunt is
a doctor and had started researching the best place to get me treatment as soon
as she heard the news, so she knew where to take me. PSL’s Denver Clinic for
Extremities and Risk has the best reported long-term survival of any center in
the world. I embarked on eight months of treatment including countless rounds
of chemotherapy that kept me hospitalized for about a third of each month, and
six weeks of radiation to the scapula. My team of doctors, including my surgeon, Dr. Hugate,
decided to opt for radiation instead of surgery. It may seem ironic that I
picked my clinic based on the merit of the surgeons and ended up not getting
surgery, but actually that’s why I needed to be there. I needed to be taken
care of by surgeons who have enough wisdom and insight to know when the best
option isn’t always surgical. They determined that removing my scapula was too
much of a detriment to my quality of life. I would never be able to move my arm
above my head. And since treatment I have been able to all kinds of things with
my right arm - not only putting things on the top shelf and brushing my hair,
but driving and biking and rock climbing and throwing my hands up in the air at
concerts and on top of mountains. I am so glad that they made the call to let
me keep my battered scapula.
I am so
lucky to have found the doctors and medical staff that saved my life and limb,
but there was another amazing aspect of this healing process that I was never
would have dreamed of. That was the Limb Preservation Foundation.
My first
introduction to this organization was a volunteer who tracked me down in the
hospital to give me a beautiful handmade quilt. As he handed it to me, brightly
colored and neatly folded, and explained the purpose of the Limb Preservation
Foundation - to help people like me - I was taken aback by how much it meant to
me. Look for the helpers. Only helpers like this can make an unthinkable
tragedy become a testament to how beautiful humanity can be. Over the course of
my eight month treatment, the Limb Preservation proved the truth of this again
and again. They provided me a beautiful wig that perfectly matched my old hair.
They paid for my father’s belongings to be placed in a storage unit, since he
had to move from California to Colorado to be with me during treatment. They
paid for gas cards for my mother to make the trek from Glenwood Springs to come
see me in the hospital whenever she could.
And after I
finished treatment and was announced to be in remission, I said goodbye to all
of the professionals I had met whose kindness had blown me away. I see them
again every three months for follow-up scans, but the Limb Preservation’s help
followed me back to school in the form of the Extremity Scholarship Program. I
was worried about the return to school, but it felt good to know I had the
support of my friends at the Foundation helping me pursue what I had been
longing to do for months. Do homework. Take tests. Vent and discuss and giggle
with my classmates.
I was
warned that going back to school would be hard. I was encouraged not to take a
full classload on my first semester back, not only because I had just spent a
year doing nothing more intellectually taxing than browse YouTube channels, but
because of the neurological damage caused by chemotherapy, often called “chemo
brain,” which disrupted my memory and my focus. But I didn’t care. I was so
ready to jump back into stress and responsibility. I ended up taking a full
course load just two months after finishing treatment and receiving a 4.0 that
semester. I also started that semester in the position of News Editor of our
school paper. Now, one year later, I am the Executive Editor of that paper, and
also hold three other leadership positions across campus, including helping
lead a support group for people affected by cancer. I just finished my fifteen
month scans, which are so far all clear, and I’m eagerly waiting the five-year
benchmark when I will be considered cancer free.
I know the road until that moment won’t be easy.
Nothing in this life is guaranteed, and it’s hard to accept that knowledge and
not feel a little flicker of fear knowing that I have no idea what’s coming
down the road for me. But then again, none of us do. As anybody who knows me
can tell you, one of my favorite stories is the Harry Potter series, and there
is a quote by Hagrid in book 4: “What’s coming will come, and we’ll meet it
when it does.” I can’t think of a more succinct way to express how we should
live our lives. What’s coming will come, and we’ll meet it when it does. And
until then, we’ll look to the helpers - like doctors and nurses and the Limb
Preservation Foundation - to bring us faith, and help us along.
