I was five years old when I was diagnosed with Ewing’s Sarcoma. It only took three words for the entire course of my life to be changed: “you have cancer.” I sat there confused when these three little words were said to me. I looked at my parents and saw them in shock, and began to realize that what was being said was not good news. The doctor began to explain everything to me, but I was only five, how the hell was I supposed to know I was just diagnosed with an extremely rare cancer?
When you are five years old, the only thing you should be thinking about is what Webkinz you want next or who you are gonna have a playdate with next. You should not be thinking to yourself: “What is death?” or “What is gonna happen to me next?” or “When will this pain finally stop?” I remember sitting in my hospital bed, ripping out chunks of my hair, and looking to my mom to ask what was happening to me. Being a cancer survivor has come with so many victories, but with every victory will come a defeat at one point or another. It’s important to acknowledge what has happened to me and how it continues to affect me – even years later.
The Ewing’s Sarcoma attacked my left humerus, and apparently, my only two options were amputation or a rare surgery that could have gone wrong. I continued to undergo chemotherapy and blood transfusions, and it eventually led up to the surgery that would change my body forever. On January 17th, 2007, I woke up at 4:00 AM and my parents drove me to the hospital to have this surgery done. The surgery removed my left humerus and replaced it with a prosthesis and a part of a cadaver’s thigh to recreate what would have been a humerus.
I am thankful enough that I was young enough to not remember a lot of my experience, but I still remember some of the trauma. Oftentimes, I dismiss what happened to me when I was a child. It is not something I talk about in depth since it was such a traumatic experience, since I continue to be affected by it. You are essentially forced to grow up at an insanely rapid rate in order to be able to cope with everything happening to you. I remember sobbing every single time my port would get changed. To this day, there are certain smells where, if I smell them again, my stomach will drop. I also remember waking up after my surgery and not being able to use or feel my arm at all.
The most devastating effect of my treatment is that I am essentially unable to use my left arm now. It is about two inches shorter than my right arm and has left me disabled. I remember all of the hours I put into relearning how to use my arm again. It just felt like someone stapled my arm back onto me — the thought of being able to use my arm felt almost impossible. Even now, sometimes I wish they would have just amputated my arm because maybe it would get rid of the pain I have. But eventually, I was able to lift a ball up in the air. I was able to push against someone’s hand and not have my arm immediately give out. Going through physical therapy is one of the hardest things I have ever dealt with. You are teaching yourself how to use a part of your own body, which you should have control over. While I am still disabled, I am always so proud to be able to discuss how it came to be and the story that comes with it.
One day, when I was getting chemotherapy, I met a boy my age with a little stuffed animal, and he gave it to me for some reason. It is one of the only positive experiences I think of when I was getting treatment. It gave me a little sense of hope, but at the time, I don’t think I even realized what the feeling I was experiencing was. As I continue growing up, I know one of the only reasons I was able to overcome everything was because of my friends and family that constantly came to see me and assure me that everything would be okay. I felt so defeated for so long. When I discovered what my friends, family, and teachers also dealt with – watching me suffer – did I begin to realize I was not as alone as I thought. While most people will never be able to fully fathom what being a cancer survivor is like, the reassurance that I had people there for me meant everything in the world to me — and still does.
Admitting to yourself that you want people to listen to about what you went through is always going to be difficult. While you may skim the surface about your trauma, what happened to you will always go deeper than making a jab at yourself. Being diagnosed with cancer is truly traumatizing and enduring any kind of treatment is heart wrenching. When you are diagnosed with cancer, the only thing that will be on your mind is: “When will this finally be over?” And the harsh truth is that it will never be completely over. It has been 14 years later and I will be dealing with the effects of what happened to you so long ago. I wear my scars with pride and I am so happy I will be able to share my story with those willing to listen.