Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.
When I was first diagnosed, I searched for the stories that would give me hope in the darkness that surrounded me. Seven years later, I continue to pay it forward by putting my own story out there for the next person who needs it to find.
I'm passing the seven-year mark since my diagnosis — one I was highly unlikely to make given the statistics I Googled once I could see straight after my diagnosis. The chances for surviving my disease beyond five years weren't pretty, and I immediately fell down a hypothetical ladder I've been attempting to climb up since I heard those fateful words.
"You have cancer," immediately sends anyone into a freefall akin to the opening credits for Mad Men, and when you finally do hit bottom and look up toward the tiny speck of light, you have no clue how you're going to get out.
My first step in the climb was to find others like me. Since being diagnosed with cancer is a big game of "hurry up and wait," I scoured the internet for stories that matched my own as one way to take immediate action. I was looking for the most minute detail in each that might give me the glimmer of hope I so desperately needed to get me through those early days of unknowns and uncertainty. I wanted to find others who had managed to climb out of this hole and overcome the devastation of being slammed to the ground by one of your worst fears.
I found, stalked and followed the stories that showed me there was reason to have hope. You know, those ones who were told they were terminal who now had no evidence of disease; the ones who were told they were inoperable yet responded so well they became a candidate for surgery; and the ones that had an amazing response to the chemotherapy I knew was laid out for me. For the sake of my own sanity and my determination, I needed to believe that I could be in that tiny percentage that was the exception in the midst of those grim statistics.
When my turn came to tell my story, I took it. I knew I had a story that was shaping up to be that story I wanted to find seven years ago. I was the story I needed to read when I thought I wouldn't make it through those first 12 rounds of chemo. I was the story I needed to read so I could know it was possible live beyond those statistics. And I was the story I needed to read so that I would know everything I was going through would be worth it.
What I never expected was that my story would matter to that mom who would nurse her baby to sleep hours after she, too, found out she had cancer. It would matter to that guy who wondered if he should demand a colonoscopy for the unexplained bleeding his doctor kept excusing and not investigating. And it would matter to that mom who somehow tracked me down from Florida to tell me that her 20-year-old daughter carried my story into her doctor's office and demanded a colonoscopy after he blamed the unexplained bleeding on hemorrhoids.
I've always told myself that if airing the dirty details of my disease saves one person's life, then it will all be worth it in the end. But one is no longer enough when I have a disease that is drastically on the rise in young adults. I can't tell my story enough. And given all that has happened in the last seven years, I can never tell it the same way twice. As I type, I know that somewhere there is a mom with a baby on her hip, completely clueless that she will be diagnosed with this dreadful disease tomorrow. I have to be there waiting for the next person to come through the door with a diagnosis they didn't think they could get.
You cannot begin to climb the mountain that is cancer without hope, and I share my story over and over not to brag or boast or seek attention or glory for the innumerable infusions or notable response to chemo I've had. I do it because I'm the story I so desperately wanted to find when I was first diagnosed. I want me from seven years ago to see that she can climb toward that light and that she can defy odds and be that exception. Find those stories, share those stories, and you be the story someone else needs to find.