I am back in remission for now. No signs of disease in my bone marrow or my spinal fluid. Bad news is I am getting small signs of graph vs host in my mouth of all places. Yes, mouth sores type behavior in my mouth. Not fun at all. It’s been hard to eat, talk and move my mouth in general. The sores aren’t that bad, at least compared to when I had them in the hospital, and my docs did give me meds to help the swelling go down and hopefully relieve some of the pain. It isn’t at this point getting any worse so that’s a good sign. I didn’t start immunotherapy last week because of my mouth along with some low liver counts. They decided to take the week off, which I am not going to lie was nice.
Now if I could just sleep through the night that would be extremely helpful. I don’t think I have slept through the night in over a month. Sleep, where did you go? Come back to me. It’s mostly just stressed induced, but it’s starting to take it’s toll. I am just tired. Physically and emotionally just worn out. Plain old worn out. I feel a 100 years old.
This upcoming week we may start immunotherapy again for a 3 week cycle and go from there. I am completely in uncharted territory. There are no more guidelines or protocols to follow. I don’t honestly know what is going to happen from one week to the next. This is all I know. What could possibly happen and that’s it. It’s all am educated guess from here.
Aww, Casey, I’m sorry. Extremely happy and grateful you’re in remission, but sorry that things aren’t back to normal yet. I hope your mouth sores heal quickly so you can eat and talk without pain. I pray with this good news sleep will finally come and you can relax a little. Continuing the prayers that the immuno therapy works and you can try to enjoy the fall season. Again, so very happy for you that you’re back in remission and blessings for a good rest of the week. 🙂