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Wednesday, October 4, 2017

Join the Cancer Experience Registry

For our 35th anniversary year, as part of our Fall Cancer Awareness campaign, the Cancer Support Community would like to highlight how to make a difference through the Cancer Experience Registry so that you or your loved ones are “strengthened by action!”

When you’re sick, it’s easy to feel like you’ve lost control. There’s a power in reclaiming your story, and that process starts by sharing your experience.

The Cancer Experience Registry ensures that no one goes through cancer alone. It is a free, confidential online community that gives both patients and caregivers the opportunity to find support and help others. The registry, which launched in 2013, has more than 12,000 participants.

As a part of the mission to empower others through personal stories, Ewing Sarcoma survivor Emily Ward shared her experiences battling cancer.

When I was 12, I fractured my arm pulling a shirt off its hanger.

The x-ray showed that the break wasn’t normal, and I immediately went to the hospital for tests. My mom, aunt and sister cried as they told me I had Ewing Sarcoma, a childhood bone and soft tissue cancer.

I didn’t know what any of it meant, but I was terrified. I started chemo immediately, which I used to write as “kimo” in my journals from the time. That March, I had an 8-hour surgery to replace my left humorous bone with my right fibula, a cadaver bone and a titanium rod.

I missed the second half of 6th grade and the first half of 7th for treatment, but I went to school when I could. My classmates were curious and wary of what was going on; they weren’t used to seeing me bald, without eyebrows and wearing a hat and a sling.

Soon I was pronounced NED—No Evidence of Disease—and continued my high school career as normal. I didn’t feel different than the other teenager. I was still just as awkward, just as self-conscious.

But still, I didn’t want to talk about it. I went seven years without uttering the word “cancer.”

Nine years later, digestive issues cropped up. I thought I had food allergies, but then I starting having trouble breathing. It was nothing like my last cancer, but I still worried. I drove to the hospital and demanded a cat scan.

This time they found a standalone tumor the size of a grapefruit in my lung.

I was a 21-year-old junior at Colorado State University studying psychology and philosophy, and, once again, cancer was about to take over my life. I had to take a year off for treatment, and I had to deal with the added stress of an administration that was not supportive.

I’m 24 now, and I graduated last spring. I’m working with Americorp as a literacy tutor in elementary schools, and I’m a youth director at a small church.

I have no idea what my life would have been like without cancer. It’s been a part of my experiences and my identity for so long.

Growing up, there were times when I felt angry. I didn’t understand why this was happening to me. I couldn’t handle the fact that so many of my childhood friends had cancer, and so many of them had died. Why did it have to be me? But then I’d think-- why not me?

I’ve realized that everyone has experiences, good and bad, that they don’t have control over but that have shaped them into who they are. This is mine.

Consider joining the Cancer Experience to share your voice and feel strengthened by action.

Category: Cancer Support