In 1976, no one thought I was going to be around 18 months, let alone 37 years. I wasn’t supposed to make it. When I was six months old, I got a neuroblastoma underneath my neck and was treated with radiation. I had check-ups every three months until I was five, then every six months after that.
I don’t know what it’s like not living with cancer, since I was sick as a baby. It gave me this never-quit attitude: if someone said I couldn’t do something, I wanted to show them that I could. It’s not an attitude I thought up—it’s just always been there.
When I was 14, I was diagnosed with goiter—an enlarged thyroid—that later turned into papillary and follicular thyroid cancer. I had a thyroidectomy, then a low dose of radioactive iodine after that. That cancer came back a year after I graduated from college in ’97 and they gave me a higher dose of radiation that time around.
During all of this, I didn’t want anyone to know, and I didn’t want anybody to make me feel any different. I covered up my scar—I wore my shirt really high—and I just tried to be as normal as I could, aside from missing a couple of weeks of school.
In ’91, no one talked about survivorship for young adults. There weren’t any support groups, and there wasn’t a young adult movement at all. I didn’t know anybody else who’d been sick. All of it made me go into a shell; I didn’t want to have attention drawn to me. I didn’t want to be a spectacle.
I took a step further into isolation in college. I didn’t want to connect with people because I didn’t want to share my story. I wasn’t comfortable with it. I only told one person in college about it and that was it. Later, I had a really bad experience with one woman after I told her I had cancer. She told me she wasn’t comfortable with my health history. She didn’t know if she could take care of me if I got sick again, and that really scarred me.
Then a few years ago, I read about a young adult support group one city over, and I was like, “Man! I need to go to that.” It was so uncharacteristic for me to think that, but I felt compelled to go. It took me a while to call, and I remember sitting in the parking lot trying to will myself to go inside. For the first year, I didn’t talk much at the meetings. But I gradually got more comfortable with telling my story, which led to other opportunities to get more involved and to share even more.
It was the beginning of my work in cancer advocacy, to help make sure that young adult survivors can live the best and healthiest lives they can. Now I feel like it’s a calling to share my story—to let people know that this kind of thing happens and there’s a way to handle it and a way not to handle it—the way I went for a long time. There’s still a lot buried there that I may never get out.
I see a lot of people even now who either don’t have access to or don’t know about resources that can make their lives a ton easier. I want to connect them. On the other side, I’m a stereotypical dude; it’s not easy to talk about my feelings. So I know you have to be ready to take advantage of that stuff. I just want it to be there, available, and ready to go.
I’m happy that I’ve gotten to this point. I’m happy to still be here, obviously. But there was a lot of struggle, and the depression was bad for a long time. I’m happy I’m in a place where I’m able to connect with other people and to build real, solid relationships—and to be married.
I often hear or read people saying, “Cancer was the best thing that ever happened to me.” That’s bullshit. I would never go anywhere near that. If I had never been sick, I’d be perfectly happy and I would have found some other calling. I can see how people want to turn a negative into a positive, and I do that by sharing my story now.
I lost out on my childhood when I realized I wasn’t a regular high school kid. There’s a chunk of years that are kind of a blur. But I’ve gained a lot of great friends. I’ve met a lot of great people and heard a lot of great stories and I’ve gotten a ton of support.
I told my wife Jen on our second date that I had cancer. She was cool with it. She said she wasn’t some shallow bitch who was gonna run away, and I thought that was awesome. She’s been supportive of my volunteer activities and I’m lucky to have found her.
I don’t have any idea who I’d be without cancer because it’s always in the back of my mind. I’ve just gotten used to it enough that it doesn’t freak me out or blow up my world all the time. Most people have their before-cancer time and their after-cancer time. But it’s always been there for me—it’s a huge part of who I am and I can’t get away from that.
Jasan is a 17-year survivor.