How It Feels to Be an AYA

Being an AYA is a unique experience—especially when you have a rare cancer like me. AYA cancer is rare, and then I have a rare cancer on top of that. How do I hate thee cancer? Let me count the ways.

Wait, I can’t quote/butcher Shakespeare like that. I don’t want my high school English teacher to come hunt me down (Mr. S was a big guy!), so let me use something not cribbed from the most quoted author in the English language: Cancer is made of six letters that take the breath out of you. For most AYAs, the things that did that to them before diagnosis were probably one of these: “We need to talk,” “Come into my office, let’s talk,” or for me, “You’ve failed this class.” Those are, as I like to say, the big three worries most nondisabled AYAs have: love, work, and/or school. When cancer appears, if cancer is your first big medical issue, you will be rudderless and you will have no idea what to do—most people learn on the fly. When dealing with it, some of us have our parents, some of us have our chosen families, and some of us will cobble together our own support systems through cancer communities—but no matter what you do, you need something so you don’t have steam blowing out of your ears like a cartoon.

So, I got a little bit off-topic there—how does it feel to be an AYA? To provide some context for that: I was diagnosed at 24 with two types of the same rare leukemia (LGL Leukemia), with that presentation possibly never having been seen before. Now I am 32 and almost 8 years in, things feel a bit more normal… if normal can be, “Holy crap, I have two types of a 1 in 5 million cancer and all of these doctors are interested in me!” (At one appointment, the NP walked in and said “Cody! I have heard so much about you and now I get to meet you!” So, I guess the nurses are interested in me, too?) 

Being an AYA feels odd; I have been disabled since birth, so before cancer (let’s just call it BC—it feels like another lifetime, anyway), I was going to doctors with some frequency. One time BC, a friend was asking me how many types of doctors I had been to, so I got to counting and after I finished I figured out that including subspecialties (like epileptologist) and variations on “therapist” (LCSW, LPC, PsyD), I had been to over 20 different types of doctors. So, at diagnosis, I went in going, “Oh, this is just another type of doctor, and I’ll be good, especially since this cancer is managed by some pills.” The first day of treatment arrived and I realized that I was very, very wrong, and my oncologist hadn’t even tried to tell me how it could make me feel (hint: like shit).

Being an AYA feels like your life has been put on pause. I have talked to a lot of AYAs online: for the teens in high school, their plans are totally disrupted—their final year(s) of high school are thrown into the dumpster because of their misbehaving cells in their bodies. For the “traditional” college students (i.e. 18-21/22), their body has betrayed them when they are trying to set themselves up for their career—and cancer might even take away that career from them because of whatever thing cancer or the treatment causes—be it chemo brain, side effects from some surgery, or an untold number of things. From there to around 30, I think that most people are trying to establish their careers, start their families, or trying to start up their families—for me, I had been hunting for a job for a year when cancer reared its ugly head (to add insult to injury, I got two calls for interviews five days after I was told I probably had cancer). For the people in the tail end of AYA (Ahhh, it’s sort of weird that I am in that group. It feels like I am still 24), I have no idea what it feels like to get diagnosed then—but I imagine it still sucks a whole lot—since people are doing their jobs, maybe have a kid or are trying to have a kid, then cancer runs in and kicks over the sandcastles they have built.

Our lives don’t even get put on pause in a fun way—we don’t get to travel (unless you want a some-expenses-paid-trip to the hospital for the inevitable side-effects-caused ER visit), we don’t get to do anything fun (although we get to meet some nice people along the way), and we don’t even get any good luck to counteract our bad luck (I did win $50 on a $2 scratch-off before my diagnosis was confirmed, though—I sure hope that doesn’t count for my good luck…)! Hopefully, all of our lives get unpaused at some point and we can continue on our journeys—or we can at least feel like that is going to happen.

Being an AYA with cancer can be like what you just read: meandering, but eventually arriving at a conclusion. Being an AYA sucks, but the journey can be about what you make it—you will probably feel like crap from the cancer, but hopefully you find some good friends along the way.