Today marked the end of my 4 month-3 days Chemo run. Chemo that helped me get to almost normal stage. I said in an earlier post that I was in the normal male range, I was wrong, I was just 2 points short of that goal. However, whereas my Hemoglobin is not within male normal range, my platelets are strongly in that range. My white blood cells that I never talk about have never fallen out of normal male range except when it was expected to during my chemo for the transplant.
Speaking of the transplant, I am about to hit the 2 year mark, which apparently is practically unheard of for MDS patients. May 17, 2018 was the day of my transplant, I have 2 months and 6 days to go to reach 2 years. Mayo transplant nurses refer to your transplant day as your Birthday. So where I turn 50 this year, I turn 2 before that. This year, May 17th is on a Sunday, I would like to go to the Region (Chesterton, Indiana) that Sunday and invite any of my friends to come up and we do lunch.
Said lunch would be an informal thing, just a sit and chat and eat thing. Nothing special except that it is my 2nd Birthday of my post transplant life. Friends, let me know what you think. Right now, I am not sure if I’d be able to do this, but I would like to get an idea of how many would be interested, so I know how much I fight for the right to travel.
As I have said before, as long as my bone marrow biopsy is clean, I should be allowed to travel (by car, I ain’t getting on a plane with Corona Virus floating around). However, if my biopsy isn’t clean, I won’t be allowed to go to Indiana. I am pretty sure that I will have a clean biopsy this time.
Teresa and I took different ideas away from our last conversation with Dr. Alkhateeb. Teresa says regardless of the bone marrow biopsy results I WILL be on chemo for the rest of my life. I say he said he was going to put me back on chemo after the biopsy if the biopsy wasn’t clean or if my numbers started failing again. Big difference. Well, I think either way I will end up back on Chemo again eventually. If Teresa is right, I will be back in Chemo probably the last week of April. If I am right, it may never happen, probably will though eventually. I do not want to be on Chemo, even the wimpy Chemo that I was getting. We will find out what he meant when we see him on April 10th.
I still am sleeping all wonky. Go to bed between 10:30 and midnight, and be wide awake between 2 and 4am. Even with a nap or two, I am tired all the time. I try to function normally during the day, but blargh it is difficult to be a intelligent guy when you are half asleep all the time. Eventually this will straighten out and I will get back to sleeping 8 to 10 hours a day. Until then, try not to call me between 9am and noon Central Time and occasionally not around 6pm to 8pm either. I nap, therefore, I am.
Drooling has cut down considerably, might be gone soon… (crosses fingers).
I still haven’t played Skyrim : Special Edition in a few weeks. I have been playing Civ 4 Warlords exclusively. I have beat my high scores on Domination and Conquest, both by a considerable margin. However, I haven’t been able to survive hardly at all on a harder difficulty than Settler (below the default difficulty), it is frustrating to me that this is the case, but I am working on it.