I didn’t mean to let 3 weeks pass by with no update but I did and now, yet again, things have changed quite a bit.
I’m currently in the hospital in Austin and will be for at least the next week. I was supposed to be going to Houston this week to get my second dose of my trial drug, but instead I need emergent surgery. The single vertebra (T5) of mine that has had cancer in it for a while has progressed and as a result is now compressing my spinal cord and causing some pretty scary symptoms like I can barely control my legs to walk and I have totally lost control of my bladder function. Spinal surgery sounds pretty scary and like something I would normally take longer to consider, but if I wait I am definitely getting worse and if I do it I have a shot at getting better. My pain is becoming less and less well-managed each day, I need oxygen because I don’t get enough on room air, and I need help with things like putting on my socks.
This also puts everything else up in the air. When can I get my next dose of my trial drug? This surgery only helps with the compression symptoms, but not with the growing cancer in my spine and this surgeon thinks that radiation will probably be the answer there, sometime between 2-6 weeks post surgery. I have no idea what recovery will be like, what my new QOL will be. I have been in an intense amount of pain lately so decreasing that would be incredible. All of this, we just have to do the surgery and see how recovery looks to get an idea. Oh, and while the pain is likely to improve right away, the bladder and gait issues will probably take longer and are tough to predict.
I am going to be coming home to many new medical devices. I had already bought myself a shower chair last week, as well as a recliner with a feature called lift assist, that helps me get out of the chair more easily. I think there will also be a hospital bed and maybe a new walker and maybe a bedside commode. Even my house is going to make me feel like a sick person.
My joy for this upcoming week is that I am in Austin and I am allowed a single visitor each day. They can come and go, it just cannot be multiple people in a single day. So my dad hangs out with me a lot and Wes can be here on the day of surgery. Thanks for following along, y’all.