Someone made the comment that I had not done an “update” in a while and that they don’t read my ramblings. So, for the sake of those interested in my health and not these tangents I get off on, I will give an update.
I just finished my first three-week cycle of my new chemo (ninlaro). It is certainly much easier to use, swallowing one very expensive capsule per week rather than an infusion or injection. I think I can say that the terrible side effects I was experiencing are very slowly getting better. I mean I haven’t had diarrhea in three days and it was four or five times per day before. So, I’m optimistic. I just have to hope and pray that it is working on the cancer and we won’t know that for a couple of months.
My original symptom (cluster of symptoms), which are neurological are very, very slowly improving for the past 14 months. On good days I can go 20 minutes now and then without the twitching and other motor problems. On bad days, I still have multiple muscle groups jerking and twitching continuously. I’ve gone five weeks without any labs so I don’t have any information there. I do think my anemia is still better as my energy level reflects that. I have run three times now, each just a mile, but slowly picking up the pace.
As I mentioned in my previous Ramblings about navigating the crazies, we are all still in this same boat. I never knew how difficult it would be fore me having absolutely no contact with people would be. I did participate in a COVID-19 antibody study. I was hoping that I was positive, but I wasn’t. If I had been positive, it would allow me to be like other people where I could at least go to the grocery store with a mask on. But for now, I have to keep totally isolated as they predict that someone with my level of cancer, renal failure and age would have a 50% chance of death if I caught Covid.
Denise is still working long hours. Our marriage is stressed as I feel desperate to talk to someone. She has very hard days at the hospital and comes home talked out and does not want to talk to me but to watch a movie and go to bed (she gets up very early). But for the grace of God, I feel that I would be about ready to lose my mind. Again, I am thankful that I have a dog and I live on a lake where I can enjoy some space. But I think many of you can relate to these things.