It has been a rough few days. Latest development is a massive headache caused by low hemoglobin which is not affected by Tylenol nor my super headache shots. It started last night around 7:30pm, thought it was a normal headache took a couple Tylenol. The headache just got worse and worse, so around 8:30pm I ask Teresa to give me a shot, headache just got worse and worse, so I got on google and found out that sever headaches go along with low hemoglobin and the only cure is a blood transfusion, which I hopefully will get tomorrow or Friday morning. I hope my hemoglobin is low enough for Dr. Wehbe, it will suck big time if it’s not. I forget if Dr. Wehbe transfuses at 7 or 8. 7 will mean another week of hell and I don’t know if I can take that.
I know I haven’t mentioned my hemoglobin much, it had been hanging out around 11 and everything was good. My platelets had been dropping drastically. But they have now mellowed out in the low 40s, while my hemoglobin decided to take a dive down to 8.6. Now all the crap that comes with low hemoglobin gets to some fatigue, confusion, HEADACHES. And once I finally get a Blood Transfusion, I will get to look forward to them pretty much monthly. I would say fun-fun but it’s not fun. As a matter of fact, it sucks since I don’t have a port or a PICC that means IVs. Hopefully tomorrow my hemoglobin is low enough.
Plateletwise, like I said, they have mellowed out in the low 40s and are just hanging out. 40 is still much lower than I want them to be. I want them back up is the 200+ range, where it spent most of the last year. But I’d be happy to see them around 150 which is the minimal normal range. Not sure what caused them to stop falling, but not going to complain about them being stalled out around 40.
And as long as I am talking about my blood. My White Blood Cells are doing fine right now. The small DLI I got gave me a big boost of White Blood Cells and they seem to be holding on real well.
It’s possible the small DLI I got actually stopped the fall of the platelets too. We just really have no idea if anything is working as intended. And I am just confused when they try to explain things. Thank the gods for Teresa, she keeps things straight in her head and is able to dumb them down for me. And then I usually catch on.
Anyhow, I know I have another DLI coming up soon. But Dr. Alkhateeb is having a run around with the insurance or something like that. I think Dr. Alkhateeb just got caught up being out of the office and things didn’t get done. Anyhow, we are waiting for the dates. It will be our next trip to Mayo. A 2 day thing because insurance makes you go one day 1 and be “Checked out” (I’m a mess) and then lets you get the DLI the next day. Waste of 1 full day in my opinion. But hey, it’s supposed to add more to my 5 to 11 months to live. Can’t cure me I don’t think. But might make that 11 a 17. Which would be nice.
After the 2nd DLI (I don’t know how long after), I will be having yet another Bone Marrow Biopsy. My poor hipbone looks like swiss cheese. But they have to find out if 1. I start showing blasts (that would be really bad) 2. if my chromosomes have went back to normal. and 3. If my PT53 mutation is mutated or gone. And the only way to find these things out is another Bone Marrow Biopsy. At least Mayo knocks me out for them.