desperance: (Default)
[personal profile] desperance
So every forty-eight hours, Karen gets blood tests and a consult with the haemologist. (I kinda want to say haemiatrician, but I know that's wrong.) Two days ago, her white bloodcell count was 800, and she was officially in neutropenia; today it was 400, so we are double or half or whatever. Twice as sunk. This is all to the good, because what's dying off is the bad immune system that was eating her alive; hopefully at some point we turn this around, and she starts growing a new one that won't be doing that. The stem cells that were transplanted into her are supposed to help that process. I still don't quite understand why they put those stem cells back into her while the chemo was still actively killing things, but I guess they know what they're doing. I guess we'll find out, at any rate.

Statistically, this process helps 80% of patients. I think that's why they divide us into groups of four; if there were five, we'd all be eyeing each other and wondering who was going to be the one who failed. Four goes into eighty so conveniently, we can all be confident of coming through.

Except that unhappily one of our four never got this far. She just wasn't generating enough stem cells to harvest, despite all the drugs they have to encourage it; apparently that's the first time this has happened, in the nearly-500 patients they've treated here. She goes home tomorrow (and the worst of it is, she had the worst reaction to the first round of chemo when we first arrived; all the nausea and diarrhoea and everything, plus her hair's all gone. Which hasn't yet happened to anybody else, although Karen says she sees more in the shower every morning).

Meanwhile, this morning Karen told the doctor that she still felt nausea, and he said that shouldn't be happening because medication, and we pointed out that the anti-nausea meds were stopped a couple of days ago, and he said that shouldn't have happened, and now we have them again, so that's good. We're very much in control of our own meds here, an array of pills to be taken at prescribed intervals. Luckily Karen's long used to this, and so I guess is every patient in the programme.

What more? I dunno. I feel stiff and sore, and a little bit sullen and stupid. Still not trying to work. Reading Kipling and drinking wine. I'm surprised we're not watching more Netflix, but Karen doesn't have much brainspace still. She spends most of the day either napping or trying to nap (there is major construction work going on immediately adjacent, where they're throwing up another apartment block, and that is not a quiet process), and she's in bed by eight every night. With me let's be honest not that far behind her. We do have to be up early (a doctor comes by with a stem-cell-stimulating injection between 7 and 9 every morning), but there is something extraordinarily exhausting about this whole process, for all that I basically sit around all day and barely do a thing.

Ten days to go. I really, really want to go home right now.

(no subject)

Date: 2017-10-26 02:20 am (UTC)
the_rck: (Default)
From: [personal profile] the_rck
When I was doing radiation and exhausted all the time, I ended up watching cooking shows-- not the high suspense competitions but the less intense kind and some episodes of Good Eats-- and things like the old Magic School Bus series (I haven't watched the new version yet). I just wanted something with no tension, something where I knew that nothing bad would happen, something that didn't make me try to guess the plot twists or to notice if something was supposed to be funny.

If there are any kids shows that you've had on a lot at some point in your lives, those might work. The PBS kids and Nick Jr and such shows are aimed at short attention spans and are generally meant to be low stress. We still think fondly of the Backyardigans and of Fetch! with Ruff Ruffman.

I didn't have nausea issues, so I'm not sure how the cooking shows would work-- or not-- in that regard. Maybe something like the Great British Bake Off? I think it's the Great British Baking Show in the US. ::looks:: Yes. That's the title in my local library's catalogue. The season I watched was pretty low stress.

Worrying all day, wondering what's coming, is not anything active, but it's sure as hell exhausting. In some ways, it's more stressful psychologically than undergoing the treatment because, at least, when you're the patient you have a specific script for it. The support people are trying to work on an improv routine and be constantly alert for cues.

(no subject)

Date: 2017-10-26 03:31 am (UTC)
ranunculus: (Default)
From: [personal profile] ranunculus
I know that it can be practically impossible, but if you can force yourself to do a bit of exercise it may help. I know you mentioned that you aren't supposed to go out and walk, which is exactly what I'd want to do!

(no subject)

Date: 2017-10-26 03:31 am (UTC)
galeni: (Default)
From: [personal profile] galeni
Hugs. Soon.

(no subject)

Date: 2017-10-26 05:09 am (UTC)
sovay: (Default)
From: [personal profile] sovay
Ten days to go. I really, really want to go home right now.

You are hanging in there amazingly.


(no subject)

Date: 2017-10-26 06:42 am (UTC)
agoodwinsmith: (Default)
From: [personal profile] agoodwinsmith
The limbo of waiting is hideous.

(no subject)

Date: 2017-10-26 02:46 pm (UTC)
madrobins: It's a meatloaf.  Dressed up like a bunny.  (Default)
From: [personal profile] madrobins
Go Chaz. Go Karen. Go Karen's immune systems.

And remember: these are extraordinary times, and the usual remedies do not apply. Tomorrow it will be nine days! Hooray!

(no subject)

Date: 2017-10-26 03:33 pm (UTC)
al_zorra: (Default)
From: [personal profile] al_zorra
As for being exhausted all the time, you as well as Karen -- recall, you are at 7,217.85 ft. altitude! That just knocks you out until acclimatized, which, when I moved to New Mexico, took about three months, and I was a lot younger then.

We are feeling that altitude here in Xalapa too -- which has us asleep by 10 - 10:30 PM generally -- though it isn't as high an elevation as Puebla. But we are on the alto plano and it will have its way. We also get up about 7 every morning, and alas, the hotel's breakfast coffee hasn't much caffination. And tea isn't a thing here.

(no subject)

Date: 2017-10-26 07:02 pm (UTC)
swan_tower: (Default)
From: [personal profile] swan_tower
The altitude thing didn't occur to me until you said it! Yes, that would certainly contribute to exhaustion. Pile the stress of being a caregiver on top of that, and yeah, no wonder you're wiped, Chaz.

(no subject)

Date: 2017-10-28 11:50 pm (UTC)
al_zorra: (Default)
From: [personal profile] al_zorra
This comment is made on Saturday (Oct. 28). A bit conncerned, as you haven't made another post since this one, and you sound a bit depressed.

I sincerely hope the institution has helped you find someone to sit with Karen while you walk about Puebla a little bit. With this holiday upon Mexico, being celebrated and observed in ever-intensifying activities this entire week through November 1 -- I really hope you get to feel a bit of the ambiance. It would energize and cheer you -- though you'll still be tired because of the elevation.


desperance: (Default)

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