So I haven't updated in a while, sorry about that.
Two weeks ago, on Friday the 17th, I measured a fever taking my temperature before bed — I wanted to go to bed so bad, it was 1 in the morning and I had been up at 730 for doctors appointments, things were mostly okay but I kept needing blood transfusions, I had had one that Friday, along with both blood and plasma transfusions both previous Thursdays and that previous Monday. So I had been up pretty early (for me) for a few days, and really wanted to go to bed, but I measured my temperature multiple times and mostly got above 100.4 F, which is where they want me to call and go to the emergency room, in case I have an infection. (Because without an immune system an infection could grow out of control quickly, and without many white blood cells I probably won't even show many signs of infection, no inflammation really.)
So they put me on really strong antibiotics for a while, my fever went away after a few days, but they wanted to keep me until my ANC had returned to at least 400. On Sunday I calculated it to be 504, so they sent me home. I tried plotting all the measurements I could find for how my ANC had changed over previous weeks and treatments, and this one fit pretty well in those ones. Though some of the antibiotics I was on most of the week, I think they said they can actually have a supressive effect on my immune system, so we were kinda tugging in both directions.
Anyway, I'm all better now. Out of the hospital. Platelets went from like 27 to 50 in the last couple days at the hospital, so I'm not worried about bleeding, but my hemoglobin was still pretty low and I can definitely feel myself getting easily winded by just a little moderate exercise. Because I was in the hospital all week I had to move my appointment in Boston, where I'll start to get to know the doctor doing the transplant. So I'll meet her this Friday instead. Which meant I also pushed back a bunch of appointments for this Friday in Lebanon to next Friday. Last time (two Fridays ago) I met with a doctor I didn't know well, who thought we might do a third round of consolidation chemotherapy in a few weeks. I wasn't expecting that but the previous two rounds have been fairly easy, to I'm not too concerned about it. Apparently the chemotherapy for the bone marrow transplant is more severe, and is more likely to be another month in the hospital, so I'm trying to mentally prepare for that I think.
Now I'm working on another toy I started designing a few years ago, one that will need a few test prints I think, which is what held me up before.
So I was not re-admitted on Monday, because while my numbers are coming back up, they haven't returned to normal levels yet, so the doctors thought it was better to delay it another week, at least. My next appointment is Tuesday (because of the holiday Monday), and they'll just be looking for my blood counts to be in normal ranges.
My ANC was above 1000, platelets were at least 67, and hemoglobin was like 8.7 or something, so I'm not too concerned about bleeding or getting sick, but still get winded pretty easily with too much physical exertion.
In the meantime I've returned to programming zeeify, but I can't seem to get the image pyramid to reconstruct the original image correctly.
I had an appointment to get my blood checked yesterday, and I didn't need any transfusions, which was nice. I made some good progress on the puzzle in the waiting room. I go back Thursday, and then have it done up in Lebanon next Monday, which if everything is doing well I'll get re-admitted for another week and do this all over again! I'm feeling okay, kinda tired still, but by the amount expected for my hemoglobin I suppose.
My ANC, the sort of first line of defense white blood cells was 0.17, on Thusday it was 0.01, and on Wednesday I had zero detectable white blood cells so the ANC wasn't even measured. Normal is 1.4-7.7, I don't know exactly what would be enough to be re-admitted Wednesday but it seems like theres a good chance I will be.
Other than that I guess I should be drinking more water.
Apologies for anyone who's been counting on this for updates, since I haven't updated in the last four days. My counts started dropping but weren't low enough to need a transfusion last Thursday morning, but by Thursday evening they dropped further, and I had a nosebleed that I couldn't seem to stop, so we went to the emergency room of our local hospital and they transferred me up to Lebanon, where I've been getting treated this whole time.
That was a very unpleasant experience, for a lot of different reasons, but I'm through it now and feeling much better.
Today I had another checkup and my counts have continued dropping, my ANC has basically bottomed out, and my hemoglobin and platelets were low enough that I needed transfusions, which ended up taking all day. The good news about that is that after a platelet transfusion I feel less concerned that a nosebleed might be unstoppable (cause I really want to avoid experiencing that again if possible).
Wednesday I go back to Lebanon for another checkup, and then Thursday I have another appointment to check my blood and get transfusions if needed, but I assume that'll depend on how Wednesday goes.
They also stuck a “rhino rocket” in my nostril, and aren't going to remove it until Wednesday, so I'm really looking forward to that, though I'm a little worried it'll start bleeding again when they take it out, but at least it'd be out I guess. I'll just have to wait and see how it goes I guess.
But at the moment I'm feeling alright again, a little easily winded, since my hemoglobin is still really low, but not too bad.
Thanks for following along!