I’ve been in a self-imposed YACCtivist purgatory since November. When I applied for the position, I was all ready to go and get out there and do this, reaching out, talking about my experiences, ready to change the world (or something to that degree). Only a few months before this, I had been given the all clear and regulated to MRIs every six months to monitor the activity of what was left of my tumor. I had also finished school (which I had to put off because of the diagnosis), I got married, and most importantly: I started to feel like a normal person now that my cancer, for the most part, was behind me.
So I flew out to Newfoundland for some training, met the other two YACCtivists, and I was pumped to be putting my energy into something I truly feel is important and make the impact I want to. However every road is not smooth, and sooner or later, things get shaken up. The unexpected happens.
During training I had a seizure. But not just any seizure, my first one in almost three years, the first seizure I remember having, and this was only the second one I’ve ever had. My face went numb, I got stuck on a word mid-sentence, and my mind was racing. I couldn’t move the right side of my body, and I felt my neck snap back before I passed out.
My last thought before I lost consciousness was “is this what dying feels like?”
I woke up, and just as soon as I’m told paramedics are on their way, they arrive and I get carted off the hospital. On the way, I told the paramedics that I was just feeling tired, totally fine, and just thankful that my body is still fully functioning.
When I returned to Ontario, I followed up with my oncologist. When we met, he looked at my scan that was less than two months old, no new activity. We hypothesized about what happened as I had been seizure-free for almost three years. There were all kinds of theories: too much caffeine, not enough sleep, not taking my medication on time. The thought of my cancer being back after a spotless scan less than two months before seemed unlikely, and I didn’t feel it necessary to rush another MRI just because. My last scan was fine, there could have been a bunch of different reasons for this to occur, so I went back to feeling “safe.”
There is no “safe”
There is a harsh truth here: there is no safe. I was in denial. I was in denial about the possibility of my cancer being back because the thought that I would only have to do this once in my entire life was just way too appealing to think about the other options. I had been on such a good roll that this wasn’t anything more than a hiccup in my new life.
Except it wasn’t just a small hiccup, it was the first bump of a few. I had another seizure on Christmas Eve and my driver’s license was suspended for 12 months. On my next MRI, they found a tiny bit of activity in a part of the tumor that wasn’t removed so I’m back on chemo for another 12 months, same cycle, same drug, and hopefully that is enough for it to stop growing again. Maybe I can get another two years before I have to deal with all this stuff again. It’s not that I’m unable to deal with it either — I did it once and I can do it again — but there is this feeling deep down that I wish I didn’t have to deal with it again, and I think that is something that anyone who has any kind of chronic condition can relate to.
So, yes, I’ve accepted that I have a form of incurable cancer, but that doesn’t mean it is any less inconvenient or frustrating. I can never tell when I’m going to have a seizure, and sometimes I have a false alarm. Do I live my life always tip toeing around worried about when the next one is going to happen? Of course not. I’m living my life the best that I can, and I’m dealing with things as they happen, not if they’re going to happen.
