Some of my best memories I have of growing up with my dad are making pancakes. My dad and I were both early risers and found ourselves in the kitchen in the early morning whisking egg whites until they were firm and folding them into batter, only to make the fluffiest pancakes. National Geographic had an image of the Luke Skywalker prosthetic hand on the cover that January. I joked with my dad about getting a hand like that but he didn’t seem amused. At that moment I realized that this was real. It wasn’t a nightmare, this was my life. And that was my moment of freedom. Why should I be fearful when I’m already living through my own personal hell? Person’s worst nightmare was my life. I had lost any sense of fear and almost felt like an object. MRI’s, doctor’s appointments, anything stopped phasing me.
You learn a lot about yourself when you’re faced with major surgeries at a young age. You learn even more when you actively have a choice in your healthcare and you have to watch your parents suffer almost more than you, watching you struggle. My parents didn’t change much but instead just look fatigued and I saw my mom try to smile more. My dad doesn’t show much emotion. He has a very dry sense of humor, almost so dry that you can’t tell if he’s insulting you or making a joke. But showing him that National Geographic magazine, I’d never seen his face turn so gray. It was as if I had slapped him in the face. Theses scifi ideas were becoming my reality. I was in the dark of my condition and part of it was by choice, the other part because I didn’t want to ask.
I was ordered an MRI by one of my dad’s trusted colleagues and well known pathologists who was quite familiar with sarcomas. The MRI was to scan my lungs to see if the cancer had already metastasized to my lungs. Sarcomas affect 1% of all adult cancers, 15% of all childhood cancers. They are among one of the rarest cancers in the world. That being said, sarcomas are known as some of the most unforgiving cancers and their lack of research is even worse. Because it is such a rare cancer, the funding to research a cure is lacking and the survival rate is even more grim. Yet I don’t understand why they are ignored. Grey’s Anatomy refers to sarcomas ALL THE TIME. in fact, Meredith’s dog died from an osteosarcoma. However in Grey’s Anatomy, the patient survives osteosarcoma with just surgery (which never happens) and chemo (which can likely lead to getting leukemia later on) yet they die of the hiccups. Remember that episode? But Shonda Rhimes is one of my biggest inspirations still so I will happily live in her world of strong female leads and breaking stigmas even if her interpretations of sarcomas are skewed. Still. Wake up researchers! Kids and adults are dying because of this!
We went back down to UCLA to see a hand specialist and an orthopedic oncologist, Dr. Eckardt. When seeing the hand specialist, he assured me that salvaging my hand was an option until he saw my MRI and the entire room fell silent. I walked out and sat in the waiting room. I remember that day so clearly: my parents and I sitting in the waiting room reading Readers Digest where they talked about coffee protecting you from cancer. To where my dad chiming in-but it can cause stomach ulcers! In those brief moments when my parents and I pretended like this was normal and that we weren’t waiting for my cancer prognosis. We were still just a normal family. I sat reading AP US History books, trying to finish my homework in this new normal environment.
We then saw Dr. Eckardt. He was a renown orthopedic oncologist who had worked at some of the top hospitals in the United States. My type of cancer was his life’s work. He had seen and taken care of countless cases like mine. And we were seeing him because we were desperate. He had no bedside manner and was kind of blunt but he wanted to save my life. I couldn’t be that upset. I loved his intern. He performed a full physical on me and then asked me what I wanted to be when I grew up. “A surgeon.”
He accidentally made a pained face probably because in his mind he knew I was going to lose my hand and surgeons can’t have one hand. Heck. They need three.
“We’ll just amputate at the wrist. We want clean margins.” Dr. Eckardt stated abruptly. “What are your goals E?” He said my name as if he had forgotten it and had to glance at my chart to remember it. He said my name like he was just filling in the noun in a mad libs scenario. How many patients like me does he see a day? I thought to myself. He had such confidence about him yet in that moment I wanted to scream at him. So what did I want? Here my surgeon was basically saying that he was going to help me but wanted to know what was I willing to sacrifice? At what cost did I believe fighting for my life was worth it?
“I want to graduate and go to college.” I murmured. I wanted to have babies and get married and live a huge life! I wanted to run over this cancer like a jeep flying over the useless speed bumps in our neighborhood going as fast as it can while also not wrecking out. I wanted to forget that this cancer ever existed and to handle it and move on as fast as I could.
My mom looked like she had been punched in the stomach and was babbling for words. Her eyes bulged and her face turned pale as she was caught off guard. She asked if there were other methods or chemotherapy or radiation. He assured us that this was the most promising answer. He then discussed prosthetics and how life like they had become. He talked about ones that can get the same freckles in the same places on the arms or I could get manicures. Were people really that vane? Within 72 hours I had found out I had cancer and that I was most likely getting part of my arm cut off. And here he was talking about making the world believe I still had a hand. I felt like I was an observer watching my life mouthing what the fuck constantly. I had lost all control. I looked around to see my mom’s swollen eyes, my dad’s focused expression, the intern’s solemn face, staring at the ground, and then the surgeon, speaking as though it was a rehearsed pharmaceutical commercial and that I was just a number. He seemed indifferent to my decision.
“Seriously just cut it off. I want a life. I just want it gone.” I heard the words come out of my mouth but felt sick as I said it. I couldn’t believe that I had just said it either. I sat, shocked, it took a moment for it to register that I had concluded my fate. I made this decision at seventeen years old. I chose to lose my right hand. I knew that I would never get to be a surgeon or play Chopin’s Fantaisie impromptu or drive my beloved stick shift jeep anymore but in that moment I didn’t care. I cared more about making it to my high school graduation and laughing with my friends. I just wanted more time. I needed more time. I had barely experienced life and I felt like I kept getting dealt the shortest straw. I just wanted to be normal. I wanted more! I deserved more…right?
I saw tears welling up in my mother’s eyes. She couldn’t believe her youngest daughter, created perfectly was going to be cut up, again. It was then that I realized that I was not a shallow person. Some people would’ve bargained and begged to keep their hand. They would’ve traded for chemo or radiation. Me on the other hand (ha!-not for long. jokes) couldn’t care less. Would it suck? Yes. Would it be terrifying? Absolutely. But if this surgeon was promising me that I would graduate high school, attend college, and the likelihood of it coming back was slim if they amputated my hand, well sign me up. You don’t have to ask me twice. What would you choose? What would you choose? Seriously! If a doctor with forty years of experience was laying out options for your potential fate: life or all four appendages? What would you choose? I thought about war veterans. They sure as heck didn’t get a choice. They didn’t even get time to think about it. And then I saw myself as lucky. I was owning this. This was my choice. How I lived or how I died was my choice. I felt powerful yet helpless at the same time. I wasn’t brave or strong. I wanted to live. We scheduled the surgery to be after my winter formal, February second.
We discussed chemotherapy and radiation. Here I was, the recipient of a perfectly new heart valve and we were contemplating whether or not pumping my body full of toxins thus deteriorating a new part of a vital organ was worth my life. Luckily, Dr. Eilber gave his few cents and surmised that chemo would reduce my risk of sarcoma recurrence but increase my risk of developing leukemia all by percentages. The chemotherapy wasn’t worth the hassle. I think in many ways I got off lucky in this cancer game. I think of some of the kids I see now and how they battle for life. They haven’t even experienced it and yet they understand life more than their parents.
“You are brave, even in the most subtle ways, and you may not always feel like the fire that you are, but you will shine on anyway.”-Morgan Harper Nicols