Jason’s Ewing Sarcoma Experiences

~Jason Rouleau

Jason’s cancer experiences began when he was only 5 years old with an Ewing’s Sarcoma diagnosis. He shares this video of how the physical implications of sarcoma treatments impacted him throughout his life and how he moved from rage to gratitude. The transcription for the video is included below.

Transcription of video submission:

Hey everybody. My name is Jay and I’m going to share something that I wrote and we’re going to get into why I wrote it. It’s called, “The Ugly Mirror.”

Handsome, charming, 

Sweet, and sincere –

Have been the adjectives that most people see clear.

If this is what people see of me, 

Why do I feel as if this could never be? 

As your eyes look down, 

My heart sinks further as if it has hit the ground. 

A state of anxiety will continue to surround me 

Through no fault of your own. You have found my ugly home. 

This emotional tranquility 

Has forever demonized the ability to look past this ugly glass 

The mirror I see 

Fills me with an unrelenting fury, 

Hatred for this cancerous curse. 

I feel as if nothing could be worse.

As I am – my own worst enemy, 

I begin to wonder

If this ugly mirror is all I’ll ever see. 

So I wrote that 17 years old and that is about this right here. (points to his upper arm) So my journey started back in 1993 when I was five and I had a bone cancer called Ewing’s Sarcoma which basically eats away at your bone and tissue and basically makes it very weak. So it breaks easily and in that happening, we had to, you know, treat as much as we could with chemo and shrink it then do this. So we got some pins, we got some titanium, you know, should joint growth plates, those are out of here. 

But, so when you’re a kid, you’re resilient. You just, you just keep going. You don’t think about what anybody else is thinking. You’re just doing, you’re just doing. It’s not until, you know, I got a little bit older and I became more mindful of my situation. And, you know, you know you feel other people and things that they say towards you. It’s not like anybody, you know, anybody was really, really malicious or nasty towards me. I mean, we have those, but we move on. But I saw a picture of myself in like fifth grade and, you know, I was in a T-shirt and it just looked like my arms were just two different planets. And it, you know, really (whew!) weight on me and to the point where I never even want to wear T-shirts again. I wore sweatshirts pretty much from then on. 

But, anyways, unfortunately, that wasn’t it. Going into my sophomore year of high school, started to feel, you know some stomach aches. And, you know, long story short, go in, get a scan, get a  surgery. You know, it came back in my pelvic cavity. So that was another, you know, we went right up there (points to abdomen) for some nice 50 staples. But it is what it is. And chemoradiation to follow. 

But guess what? I am still here. Definitely wasn’t easy. I was already angry before round two, so round two kind of really spiraled me. To this day I won’t forgive myself for some of like my emotions and things like that because I never dealt with them. I tried to just pretend almost none of these things even happened to me, and I never even wanted to be recognized for this journey or anything like that. 

I was not appreciative of what it has taught me. And I can tell you I would not be this or here without all that, you know? So what I finally realize is that it’s not about me, It’s about we. And I know that there’s plenty of people out there right now who are struggling in one way or another. And I want to tell you that there is light at the end of the tunnel because I promise you that dark days, you can get through them. I promise you they were dark, you know. Twenty-five years old, I mean, another 10-year period, all of a sudden I started having seizures. I mean, things like this happen that stunted me. But I’m here to tell you right now that there’s so many reasons that everything needs to happen this way. I’m thankful for it. I am now.  I wouldn’t be this way If none of this didn’t happen to me. And if there’s anybody out there who wants to talk, wants to hear more, I just want to let you know that I’m always here. And all I ever want to do is help.

So thank you very much to Gryt, CancerCon, for getting me out. of my shell. I really appreciate everything, and I look forward to seeing everybody. 

Thank you very much. This is Jay Rouleau signing off. God bless. 

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