28-year-old white male diagnosed in January 2012. "Remission" in June 2014. Tasigna 300mg x2 daily.
Not sure how many people read this, but posting anyway.
I find it hard to keep up with this forum...mainly because I'm embarrassed to have this disease, and I try not to think about it. Yes, it does suck to be branded with "cancer." It was especially strange to be diagnosed with CML at 25 (a disease that isn't common for people my age) and have to start taking pills that make me feel shittier than I did in the first place, while forking out thousands of dollars a year to pay for them.
My real struggle has come from trying to justify the disease to my peers. How do I explain that the "chemo" I have to take every day isn't the same as the kids in the St. Jude's Hospital commercials? I'm not losing my hair, losing weight (unfortunately), and not puking 24/7. I still feel like shit, but since I'm not in the hospital, no one seems to understand.
I feel stupid now. I can't speak fluidly like I used to. I acted in plays before this medication. I was the "funny guy" among my friends. I used to sweet talk every woman I spoke with (especially my grandmothers). Now, I second guess myself in every sentence because I feel that I've lost any sense of short-term memory. I know what I want to say, then all of the sudden, it's gone.
I'm constantly tired. Luckily I work second shift, because I usually don't fall asleep easily. I don't know if my sleeping problems are from the lingering knowledge of my diagnosis, or from the $90/pill capsules I have to take every morning/night. Regardless, even after my eight hours of sleep, I don't want to get out of bed. I feel weak, I feel tired, and I especially feel unmotivated.
Lastly, I feel labeled. I tried hard not to tell people what was going on with my health, but word got around. It's hard for me to play the role of "guy with cancer," because I don't feel THAT sick. I've always looked at cancer as severely crippling, but I've never felt severely crippled. I've never accepted the fact that this disease could very well come back and kill me. I've felt worse from lesser illnesses. The hardest part of having CML is trying to justify yourself to your peers.
I feel like I don't relate to a lot of people on this forum. If anything I wrote makes sense to anyone reading this, feel free to contact me.