5 Years Out

On June 13th I was finally able to say it’s been 5 years since my stem cell transplant. They say that once you reach 5 years, your original disease is cured. What better way to celebrate than a trip to Nashville with my family and relatives.

I wish I could say everything in my life is perfect. I’m 5 years cancer free, I have a great job that I love, a house, amazing friends and family..the list goes on. From the outside looking in everything seems perfect. This couldn’t be further from the truth. It seems my quality of life will never return to what it was pre transplant. I hate talking about all the negative side effects from treatment and drugs. If I complained about every little thing, nobody would want to talk to me. But truthfully it’s always something. I feel guilty complaining about small things because technically I could very well not be alive today. On a day to day basis it’s hard to remember how blessed I really am. Nashville was amazing but with my cataracts, I could barely see anything. I couldn’t read signs, menus etc. Just another excuse to go back I guess. I can’t see faces anymore. My whole world is blurry. Driving has become a huge challenge, but I still have to get to work everyday. Work is challenging on a normal day, so not having my eye sight is becoming overwhelming. It’s hard to communicate with people when I can’t see their facial expressions or even see if they are looking in my direction. I’ve been patiently waiting for my cataract surgery for months now. I’ll finally be able to see out of one eye in two weeks!

My doctors and I have decided to stop my photopheresis treatments. After 3 months of treatment twice a week, no improvement in my skin at all. My biggest fear. I just spent the last 3 months trying to improve my quality of life, only to end up making it worse. Those 3 months took a toll on me physically and mentally. I felt extremely down, worn out and isolated trying to juggle these treatments, work and maintain a social life. I’m disappointed the photopheresis didn’t help but I’m feeling much better mentally not going to Toronto every week. I’m also optimistic about some trial drugs for GVHD. I’ll hopefully be starting one of these drugs soon.

Other than those few things I’m feeling good. The odds are in my favour at this point but I still worry about relapse. I still find myself going back to read the studies on long term complications after transplant. So far it has been pretty spot on. Although it worries me, it at least gives me some sort of idea of what’s to come.