Ups and Downs (and back Up again)

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!


Resting at Home

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!



Back at Home for a Few Weeks

I got back home again last night, and am doing well. Feeling plenty strong still, though sometime this following week my blood counts (ANC, hemoglobin, white blood cells, and platelets), will probably fall pretty far, I might need a few tranfusions at points, but that should be fairly routine. 

The chemotheraphy didn't seem all that bad, I've still got some itching, but my biggest complaint is probably that I need to use these eyedrops for the next day that leave a bad taste in my mouth. I lucked out and had a stuffy nose most of the week which actually prevented the bad taste.

In about four to six weeks (depending on how I recover I think), I'll do another one of these, and then hopefully be able to find a transplant match and move on to that step. One thing at a time though.

This hospital stay was so much easier, I'm sure in part because I knew I was going in in the first place, and I knew I was leaving, so I could prepare for the whole thing. I was labelled a fall risk again (because of my past history of passing out last time), but the doctor gave me an exemption and they let me walk alone all over the place, including outside the ward and the hospital, when accompanied by friends. That was nice, we ended up walking about 3 miles a day that way.

But obviously it's much nicer to be home, sleep in my own bed. No tubes in my arm. 

I guess that's all for now.

Thanks for reading!


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