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.
So I had appointments Wednesday and Thursday, Wednesday my white blood cell count was 0 — neutrophils are a type of white blood cell, so they were 0 as well. Thursday they were 0.01, so maybe they're starting to bounce back, my next check is on Monday so I'm staying in this weekend and wearing a mask when I have to be in public. I had another blood transfusion on Thursday but my platelets (28) were still well above the transfusion threshold (20), so that was reassuring. A doctor told me usually it bottoms out in days 10-14, but I was on day 16 Wednesday, and that wasn't surprising because the first couple rounds of chemotherapy had really done a number on my immune system. So I've been unconcerned about it.
Getting prescriptions transferred and refilled has been a lot more annoying than I would have otherwise expected, but I think I have it all straightened out finally.
Longer term my next appointment with the doctors is Monday the 23rd, and if my numbers look good they'll admit me for another round of consolidation chemotherapy — so I get to look forward to repeating all this again in the next few weeks. After that I guess we'll be looking at how to get someone else's immune cells into me, but so far the donor search hasn't found any 10 of 10 matches. If they can't find any match I guess they'll do a partial match, which carries a greater risk that the donated immune system could mistake me for a foreign invader and attack me. I haven't asked what we do if that happens, I guess I'll ask as we get closer to that.
In other news I'm working on a toy idea inspired by curved crease origami, and just ordered a sample of a flexible material to see how much the idea might work out, so I'm kind of excited about that.
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!
So things are going well, I'm at home, feeling alright, and after my last dose of cytarabine my blood counts should be dropping (and then rebounding) over the course of this or next week.
Today I was asked to rate my overall health by a representative of my heath insurance, and yesterday I was asked the same question by a nurse at a cardiology appointment. I didn't say excellent, but then I did say very good, with the exception of having leukemia — how to balance the two? I want to say that, since no one knows how this will play out, that it's not really right to say I'm doing good or not, but then I guess the fact is I could be doing worse, but not much better, so in that sense, yes, I'm doing as well as can be expected maybe?
I had a cardiology appointment on Monday so they could see how the pericardial effusion was doing (that was when there was fluid around my heart), it was good news, there is no sign of it.
Today (Thursday) I had a checkup in case my hemoglobin or platelets were so low I would need a transfusion, but they were a bit above that concern, so I got to come home quick and easy. I have two more appointments like that next week, Monday and Thursday, but this is all routine expected stuff.
So for now I'm just taking things very easy, and feeling okay about it!
So it's been a few days since I've updated — as has been the routine lately, this post is about my health.
This post is about my health, if you're here for another reason, feel free to skip it.
This is a post about my health, so feel free to skip it if you're not interested. Thanks.
This is an update about my health, so if that's not your thing, just skip it; otherwise you can click the read more link.