Thursday I went to the doctor and finally got some amazing news!
They finally got my chimerism back which showed that I was at 100 percent donor. He decided that I wouldn’t need anymore treatment. I was so happy I hugged him. Usually when I take my friends with me the doctors appointments become a shit show with mishaps and extra tests. This time I took Cheyanna with me and we just got some really awesome good news.
He said he’s still going to present my case in front of the other doctors but since I still have the awful joint pain which indicates graft vs host disease. It’s clear my donor cells are working because if they’re attacking me, they’re definitely attacking the cancer.
I asked the doctor how long I’ll be dealing with the Chronic Graft vs Host Disease in my joints. The doctor made it sound so promising when he told me 30 percent recover. I’m confident that I’ll be in the 70 percent that it stays forever but I guess there’s always a compromise for being 26 and alive.
I see a really awesome team at KU called Palliative Care. They manage my symptoms very well. They adjusted my pain medication dose to keep me more comfortable because for the last few days my pain had been debilitating. I’ve been writing my posts while laid up in bed just because I’ve been aching so bad but finally I have enough pills to get up and be a functional human being.
One of the things all this treatment doesn’t prepare you for is your new life after cancer. It’s hard for me to adjust to the fact that I’m never going to be the same but again. I guess it’s one of those trade offs for being alive. It’s hard to imagine and sad as well that one day I’m not going to just suddenly go back to normal. That one day I will wake up and finally not ache.
Everyone talks about the “new normal” but they don’t necessarily prepare you for how drastically different this new normal is going to be. No one ever told me that I’d daily struggle with pain, and tiredness and not being able to get around. In fact in most cases they had acted like I would go back to exactly how I was before cancer but the longer I’ve been on this journey the longer I’m realizing that that’s not the case.
I guess that’s not necessarily a bad thing either. I think I’ve realized it’s important to stop and smell the roses. We don’t always need to be in such a huge rush. You only get one life, you might as well enjoy it.
Sometimes life is hard, and sometimes it’s sad. But you can’t appreciate all these wonderful beautiful moments without having some hard and sad ones.