After my first transplant, I was almost euphoric at having survived. I had a party on my first bone marrow-a-versary. I had a party for my fifth bone marrow-a-versary. I went to brunch with my closest friends for my tenth. Every year was exciting and a reason for gifts. This time I barely acknowledged my first re-birthday. It's been so different and more difficult. People really rallied around me the first time and this time I was lonely a lot of the time. I've often wondered if people were sick of me being sick and I get it. Maybe it was that I did it once, so everyone assumed I would just get through the hell again. I have gotten through it, but not with the joy and exuberance of the first time. The sheer joy of being a survivor isn't here this time. Could be the constant fear of another relapse. Don't get me wrong, I'm more than grateful to be alive. I'm hopefully going to find out about my donor in April, but only if he agrees. I really want to know his name. It would be really funny if it's Hans.
THINGS I DEAL WITH:
My PTSD can be very bad at times. I don't say too much about it. There have been times when I've tried to explain that a certain thing can set me into a tailspin, only to be told that I need to do it anyway. That's just not how this shit works. I have been set off by very small things. Opening a makeup bag that I had at the hospital, literally made me a crumbling mess of hysterics on my bedroom floor. Certain unexpected smells can transport me to unpleasant places. Sometimes it's mild and I can sing the ABC's to get me out of it and other times I'll suffer with the residual affects for days. I'm afraid to be outside in the Spring and Summer for fear of being bitten by another tick. I'm nervous around children that I don't know, because they might have some illness. I used to love kids. I freak out if someone starts coughing around me. Airplanes and cruise ships are a big HELL NO!! I need to have a colonoscopy and I'm terrified to the point of tears to do it. I never want to see the inside of an operating room again. I need to find a new doctor, but I don't feel safe. I don't know if I'll ever feel safe again. Also, some doctors don't want to treat me because they aren't familiar with all this transplant stuff. Yesterday on TV they showed a plane taking off from Logan airport in Boston and my breathing changed as I was transported to staring out my Boston hospital room watching the planes come and go. These things don't happen every day, but they are there and they are difficult and they are real and they aren't an excuse. If I say that I'm not ready to do something, I'm really not ready and I may never be ready. I have anxiety every month when I go to get my labs done. I thank God when I don't get a call from my doctor to discuss results. It's always a rough week after getting my labs done.
I'm exhausted almost all the time. It's a side effect of all the fun things I've been through. It has gotten slightly better over the past two years, but nothing significant. I had the fatigue after my first transplant, but now it's worse. Maybe it's cumulative. I can't physically go on long trips. When we go to my doctor appointments in Boston, it takes me days to recover. Between the fatigue and the pain in my hip, I'm spent. Again, not an excuse, just a fact. This has been a rough few years, but I look really good. Let me qualify that, I look really good when I put on my wig, makeup and real clothes (not jammies). Way too many jammy days have occurred.
I didn't write this post to be a sad sack, I only want people to realize that getting rid of the "c" word, doesn't mean you are all better. There are physical and emotional ramifications from the battle and the treatment. I've learned how to maneuver through most things, napping helps, so does swearing.
One of greatest thing that has come from this whole thing has been my love of writing that has morphed into my love of comedy writing and performing. I really enjoy my comedy classes and laughing my ass off with my classmates. I also love sharing the funny stories of things that actually happened while being sick. Sometimes I resent getting sick again and rightfully so. I don't think I'd be human if I didn't have those moments. The really weird thing is that it's brought me to be who I am today and I kinda like me this way even though I still have work to do and learn. I hope to be learning for a really long time.
Peace out Peeps! 🐥
