Well, not quite: but tomorrow is our last day here, and Saturday we have an obscenely early flight back to the US.
Karen has maintained her tendency of being always on the bell curve, only more so: her numbers crashed to the lowest imaginable when they were supposed to dip, and soared in recovery after. When she needed a leucocyte count of 4K, she had 38K. So that was okay, and she was discharged from the treatment two days ago. Since when she's largely been sleeping, because she's still incredibly weak, but hey. We'll take that.
We are turning our minds to departure-type things, running laundry loads and packing medications for the next six months. She's going to be vulnerable that long at least, and there's a list of things she's not allowed: sushi and crowds and suchlike. Also wine and restaurant foods, both of which are rather more a problem. We'll deal. Well, she'll deal, largely. I'll cook.
I've finished two more chapters of the Crater School vol 2, but I haven't done much else while we were here. I was hoping for more, but this whole caregiver scenario is kind of mind-sapping. I've read a lot of books, and even more internets. That's about it, really.
Whoops - my pledge to post regularly slipped a little, there. Sorry 'bout that.
This is Day Plus Eight, and all the news is good. During our little interstice Karen has mostly been feeling rotten and barely eating; her white blood cell count was down to 100 two days ago, which is awesome and ideal and kinda scary also, because what if it didn't turn around? Also she had to have an infusion of platelets, because that count had dropped below 10K which is getting into non-clotting territory. A bag of platelets looks remarkably like a bag of my semi-gelled chicken stock, but I was good and didn't ask to taste.
Since then, though, K has been feeling better and started to eat: banana oatmeal in the mornings (for I am awesome and thought to bring steel-cut oats with me, and bananas are the only fruit - other than avocado - that she's allowed in neutropenia) and then the soups and pastas of the astronaut food.
And today we had another blood count, and her numbers are way up, to 1900 little white blood cells and 45K platelets. It's the ultimate hairpin, your numbers crash downward and then swoop upward, and this is the ideal path to follow. She is still in neutropenia until she hits 4000 of the good white stuff, but the doctors are confident she'll be there by Tuesday. Then she gets a final infusion, and basically we relax until Saturday, when we go home.
Meanwhile, as foreseen, her hair has fallen out. Most of it, anyway. The sad remnants were shaved off yesterday, and behold: is she not beautiful?
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.
Properly, falling is Karen's job, and she makes a much better fist of it than I do. We can't all be second-degree black belts in Aikido.
However, Karen is mostly lying down these days, and not well situated for falling; so to keep up the Brenchley/Williams average, I took the task on myself. It's not hard, when the sidewalks around here are so uneven. Unfortunately they are also concrete, which is hard. So I smashed my lovely glasses irreparably, and cut myself about a bit; and came home and Karen looked at me anxiously and declared that I needed to see a doctor. So I joined one of the other groups on their bus to the clinic: where I was seen successively by two nurses and three doctors in an increasingly elevated hierarchy. There's a cut right at the corner of my eye, and they were worrying about that and whether it might need a stitch or two. They've decided not, probably, ish. At the moment some deviously snipped pieces of sticking-plaster are holding the edges together; they'll look at it again tomorrow, and see if that's doing the job.
Meanwhile, I am mostly wearing my reading-glasses for everything. I do have spare regular glasses, but those are single-vision, and I'd got so used to progressives: I think I'd rather have everything blurry beyond five or six feet than simply not be able to read at all.
And in other news, soddit. Also owie. Much of me is barked or scraped, jolted or twisted or just plain downright sore. I am very resentful.
All things are weird, but some are more weird than others.
It's been a long time since I was this monomoniacal, so focused on a single activity or outcome. I have been like this about books, in the long-ago; I wrote a fat fantasy in twelve weeks, a shorter book in eight. One of the attributes of this new life I lead is that I thought that degree of focus was gone for good; marriage is all about multitasking, I find.
And now here we are, and the state of the Karen is all that there is, minute by minute and day by day. She's pretty much come through the nausea now; she's starting to eat again, tentatively; and as was foretold us, she is deep in fatigue. We both went to bed stupid early last night, she slept well, and now mid-morning she is back on her bed and asleep again.
She'll have to move when the cleaner comes, because all the bedding has to be washed daily while she's in neutropenia. Could be a week, could be longer; there's no telling. We are cheerleaders for the little leucocytes. She gets a morningly injection to hurry them along, but other than that there is nothing to be done but wait and hope.
Which reminds me: I have read The Count of Monte Cristo, and A Different Light, and am halfway through Kim. I thought I'd do more writing than reading, but that's the monomanic thing: I can't think about anything else. I can't think, period.
I may be showing the first signs of cabin fever. After a fortnight basically withindoors, I suppose that ain't bad, but it is deuced inconvenient, especially coming today of all the days we've had so far.
If I twitch back the blinds on the full-length picture window at my back, I have a view of a car park, a tower block, the London Eye (well, actually it's the Star of Puebla, but you know what I mean), and Popacatepetl. And really I just want to be out there. I could shop - there are things Karen will need, tomorrow if not tonight - but mostly I just want to walk. It's how I experience any new city, foreign or domestic; I am the original flaneur. I like to walk unknown streets, peer into unknown windows, watch the behaviour of strangers on the street. Sit in parks, eat street food I cannot name, read signs in languages I cannot understand. Full immersive protocols. I'm good at this.
I'm here as Karen's helpmeet and caregiver, though, and it's very much part of the contract that I not wander off and leave her stranded. Today especially, when she's too sick to leave her bedroom and might want anything at any time.
I've tended people on their sickbeds before this, of course - in a sheerly practical sense, I'm rather good at it, tho' I remain the world's worst hospital visitor, because I can never think of anything to say - but never this intensively for this long on my own. When Quin was dying, it took a year and was kind of like a war - moments of high drama, interspersed with long periods of dull calm - including the whole army thing. There was a team of us, a dozen or so standing shifts, with all the back-up we could want or dream. Here, there's pretty much me. Lots of doctors and nurses on the other end of a phone, of course - but you know how I am with phones.
When I said I might need respite care when we get home, I may not have been kidding. Or I might just be difficult to deal with, or y'all might need to be extra-nice to me for a while, or... I just have no clue. You might find you have two patients in recovery.
Day Plus One, and we are largely hanging around the apartment trying to do nothing and not quite succeeding.
Last night I had a magnificent pharmaceutical accident: for we have a few old tablets of Lorazepam with us, and after the night before I felt that I was due a proper night's sleep. Experience has proved that I can cut one of these tablets into four and feel the benefit with a mere quarter: so there I was with one of those and our magnificent little pill-splitter device, and I rather cackhandedly dropped the pill into the sink. Which was damp.
By the time I'd fished the pill out again, it was already starting to dissolve around the edges, so I performed my famous "what the hell" shrug and swallowed the whole damn thing. Last time I took a whole one, I famously slept not only through Karen's rising and showering and dressing and going off to Grand Jury, but also through the boys' breakfast time - I'm sorry, that should be I SLEPT THROUGH THE BOYS' BREAKFAST TIME! - and woke at ten with two anxious furry faces wondering if I was edible yet, or if they had to wait a little longer.
This time I slept like a delicious contented log till seven-thirty, when Karen needed me. Lord knows how long I'd have slept else. Sleep is good, y'all.
Karen's not feeling too good today. I have made one emergency dash to the pharmacy, and am poised for another as and when. Otherwise I read and poke about obscure corners of the internet and occasionally think I ought to be seizing this chance to work but. I got nuthin'.
After a truly horrible very bad night, we went to the clinic this morning and Karen was immediately whisked off to a side-room for intravenous meds to get some kind of control over her nausea etc. They followed that with what we were really there for, the transfusion of her stem cells back into her body. I was sent from the room and didn't get to see that. Don't know why, as it was the pivot-point of this entire adventure and I cannot conceive any health risk in having me present, but there you go. There I went.
Afterwards they trotted out cupcakes and candles and sang "Happy Birthday", for this is the conceit, that all our group of patients has just been reborn. Karen-people, we are adding October 21st to her commonplace birthday of March 21st: it's not quite a half-birthday, but close enough and readily remembered.
Now we're back in the apartment, and Karen is resting in her room, sipping a ginger ale and nibbling a Ritz cracker or two. Me, I am drinking wine. We may be establishing a pattern here.
So, I shall elect to call that Night Minus One, as against Early Morning Day Zero: for, as anticipated, Karen had a horrid time of it. She's sick as a dog, and staying in bed until the last possible moment. I didn't sleep much either, despite having taken a lorazepam in hope; as you know, I have my own issues, and was out of bed frequently beside to fetch her things she couldn't achieve herself.
Still'n'all, we can hope that was the worst of it. Eleven o'clock this morning, she'll be transfused with a billion stem cells of her own making, and they will leap into action to restore her murdered immune system. This will be a process of months - boosted along the way by a repeat of all her childhood vaccinations, which weirdly delights me - but little by little, we can rebuild her. We have the technology. Etc.
Meanwhile, the tradition of Thursday dinners continues at our house in our absence, which delights me. Also I suspect the boys of being pampered rotten, which kinda delights me also. We have already seen photos of their new fluffy snuggly beds.
Day Minus One: and all the worst is behind us, except for the actual feeling rotten. Hopefully.
We lead a temperate life, those of us who go down to Mexico in search of healing. Karen had her last round of chemo today (yay!) and we've just been quietly in the apartment since. She went to bed not long after nine o'clock; now it's barely an hour later and I am prone to follow. Not all the way, for we are obliged to occupy separate beds for the next couple of weeks, until she has at least the semblance of a normal immune system again; even my poor teddy bear has been exiled from her company, despite his sterling work in keeping her safe from demons of the night.
Karen ate most of a bowl of soup for dinner, but I'm not sure how much she's actually kept down. Tomorrow she gets all her billion stem cells back again, which is Day Zero and the start of her whole new life (hereinafter she gets to celebrate two birthdays a year, and who could deny her that?), but mostly she's just going to be feeling dreadful and not at all like partying.
Indeed, there's not going to be any partying for a while. She'll be in neutropenia, where she hasn't enough white blood cells to fight off infection; she stays in the apartment and eats astronaut food, wears a mask, doesn't get to kiss me. People say that Netflix is her friend, but tonight she was too tired to watch TV, and the fatigue is likely to get worse rather than the other thing. I have no idea; we'll find out. And my own prospects likewise: I don't know how I'll get through these next weeks, for it all depends on her. But at least the worst of the treatment days are behind us. I'm seeking comfort in that. And going to bed as soon as I finish this bottle. My doctor was rather shocked to be told that I drank half a bottle of wine a day; let nobody tell her that these days it's a bottle and a half at least. At least. It's easier to be accurate, when Karen's not drinking at all; but it's harder to be abstemious, when there really isn't that much else to do. Wine helps, y'know? Of course you know. Who do I imagine I'm talking to?
