Limb Preservation Foundation speech

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.