?

Log in

No account? Create an account
The Idle Solitary [entries|friends|calendar]
desperance

[ website | My Website ]
[ userinfo | livejournal userinfo ]
[ calendar | livejournal calendar ]

Our bags are packed, we're ready to go... [02 Nov 2017|09:08pm]
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.
5 comments|post comment

Catching up [29 Oct 2017|03:16pm]
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?

20171028_180812
4 comments|post comment

Yeah, no. I dunno. [25 Oct 2017|08:35pm]
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.
3 comments|post comment

No wonder they call it Fall [24 Oct 2017|02:41pm]
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.
2 comments|post comment

Friends, tobacco or bread [24 Oct 2017|10:12am]
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.

So what should I (re)read next?
2 comments|post comment

Restless legs [22 Oct 2017|02:12pm]
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.
3 comments|post comment

What do you do, on the first day of the rest of your life? [22 Oct 2017|10:59am]
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'.
1 comment|post comment

Day Zero: nothing will come of nothing [21 Oct 2017|02:43pm]
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.
1 comment|post comment

Past miseries bind us nothing to the future [21 Oct 2017|09:37am]
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.
1 comment|post comment

The ravelled sleave of care [20 Oct 2017|10:03pm]
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?
1 comment|post comment

Update: Karen Wins The Day! [19 Oct 2017|03:56pm]
So everyone came out of the apheresis room, and was hungry, so we went across the road to a local restaurant for lunch. And were summoned back precipitately, because they had counted everyone's stem cells and the results were ready. Hearts in each other's mouths, back we came - and Oystein had 500 million, which was plenty, and Rafa had 750 million, which was awesome. And Karen had over 1000 million, and is best. Which of course we all knew already, right?

So now we're back in the chemotherapy room, being chemotherapised to kill off the immune system all but entirely. That's the rest of today and then tomorrow too. Saturday, she gets all her thousand million stem cells back, under firm instructions to get stemming, or celling, or whatever it is that they do.
post comment

Time is a mocker, strong think is raging [19 Oct 2017|10:45am]
Day Minus Two: and this is the big one, as far as treatment is concerned. We have been told to expect to be in the clinic for about twelve hours.

At seven this morning, Karen was allowed a breakfast of one (1) glass of water, one (1) granola bar, and one (1) piece of fruit with no added yogurt. Fortunately, I was allowed all the coffee I wanted.

At nine we piled into the team bus, and came to the clinic. Access ports were opened, blood was drawn, and we sat around for an hour while they tested that for stem cell wealth.

Once satisfied, they are taking us - or at least the patient half of us - into the apheresis room, to be attached to a machine for the next four hours. Their blood will be slurruped out of them, and the stem cells fished individually (I like to think) from the blood before it's pumped back in again. Karen is rated for 117,000,000 cells. Which is quite a big number, and I want to know how they count 'em.

After that comes five hours of chemo, also through the port. Then they take us home.

Karen's been connected up, and we caregivers are not allowed into the apheresis room. So guess what I get to do for the next four hours?

Uh-huh. Fortunately, while we were making our wills and giving all our worldly goods into the possession of a trust (The Trebizon Trust, did I mention? I am convinced that in a few hundred years it'll be this megacorp, dominating human space if not in fact the galaxy), our lawyer and I had a cheerful talk about how The Count of Monte Cristo is a masterpiece, and I thought, "Ooh..."

So I'm halfway through that, and there's enough reading left to keep me happy for a day or two to come. After that, though, Lord only knows what I'll turn to next. Suggestions of long, familiar comfort-reads available on e-book will be gratefully received.
1 comment|post comment

They also serve who only [18 Oct 2017|02:39pm]
As I write this, Karen’s in surgery. By the time I can post it - for I have no wifi at this hospital - we’ll be back at the apartment, and she’ll be fine. Drowsy, maybe. It’s a minor procedure, to connect a port to her bloodstream so that she can be a cyborg for a few days; local anaesthetic and a sedative, no more, but they say she’ll go to sleep.

We have a room that is ours for the duration, and all I have to do is sit in it and wait. Half my task here is waiting. (I have never liked waiting, and do it poorly.)

Outside our room in one of those windowcleaners’ cradles that hang on cables from the roof. Two men are in it with all the tools, and they are doing all the things to the wall at my back: hammering, sawing, drilling. It’s like being in the apartment, transposed to a minor key: for there they are building another tower block just next to ours, and that affords us all the noises of major construction.

I am in a weird mood, I find. I feel ... pent. Potentially eruptive. Popacatepetl in miniature. It’s just the waiting. Karen will be fine, and so will I.

I’m rereading an old favourite novel, Elizabeth Lynn’s “A Different Light”. I still hope to meet her one day, for I know she’s local and we have friends in common. (I’m also rereading “The Count of Monte Cristo”, though I have no hope of meeting Dumas. That’s on the other Kindle, back at the apartment. Reading different books on different Kindles may seem perverse, or contraindicated, but really it’s just about power management. This one, the original, a full charge lasts for weeks; t’other is a tablet-in-embryo and I only get a few hours out of it, less than my phone even.)

I thought I’d be doing more work than I am, but apparently a man can just read and shop and cook and watch TV. Maybe after this week is over, when the procedures are behind us and Karen’s just apartment-bound in neutropenia, I’ll find the mindspace again. These next few days are going to be rough: apharesis and chemo and then at last the transplant. At the moment she’s in a lot of pain - or would be, but for the shots - which they tell us is a good thing, a sign that the process is working as it should. Her bone-marrow is sending lots of stem cells out into her bloodstream, ready to be harvested, yay: but this is a painful process, and her bones ache. Tonight’s going to be the worst of that, and she’ll have the discomfort of today’s operation to deal with also. Plus a lot of stress about tomorrow, when we’ll be all day at the clinic.

Now there are weird noises happening just outside the door. Power-tool of some kind, I think. I’m not going to look. They said I can go down to the cafeteria and get some coffee, but I think I’m just going to sit here and wait till Karen gets back.
2 comments|post comment

We know where we are and exactly how fast we're going [17 Oct 2017|11:49am]
Day Minus Four, and this is the last of the easy days we get, this side of the countdown. Well, they're all fairly easy for me, obvs: all I have to do is shop and cook and wash dishes and keep an eye on Karen. But we've had a week of largely being in the apartment with no calls on our time; she's had injections morning and evening (when the doctors come to us), a regime of many pills, and that's been it.

Tomorrow morning, we go to hospital for a surgical procedure, to fit Karen with a port below her clavicle, a direct line into a blood vessel for both input and output. Thursday they tap her precious bodily fluids for a few hours, to filter out 117 million stem cells; then they immediately turn the tap the other way and pump in more chemo. And more yet on Friday. Saturday is Day Zero, when her stem cells are returned to her to start restoring an immune system, hopefully one with better discipline, that won't be trying to eat her hereafter.

These few days are going to be the hardest, by the doctors' own admission. After that it's a couple of weeks of recovery in more or less isolation. If you're curious, look up "neutropenia". Karen gets to eat astronaut food and/or very well-cooked meat & fish. No salads, no fresh veg, no fruits. We wear masks, and she probably doesn't leave the apartment. She probably won't want to.

And then we're done, or at least they're finished with us. We come home (and trust me, you have no idea how attractive those words sound), and spend the next year rebuilding Karen's health. Lots of home-cooked food (hah!), lots of rest. A degree of care in social contact [get your flu shots, people! Herd immunity is going to be our friend, for the foreseeable future]. An ongoing drug regime for a while, but nothing onerous. Oh, and making friends with the cats again, because we will smell of the vet.
post comment

Negative time, positive vibes [15 Oct 2017|10:14am]
Good morning, from Day Minus Six! (I actually nearly typed Seven there, which would have been wrong. Happily I had the wit to check. These negative hours pass inconsistently, I find, and I lose my place in the calendar.)

This morning I learned in Mexico what had eluded me for five years in California: that not only does the Bay Area have an active cricket league, but that Sunnyvale has a cricket club which is a bright star in that league, and has a dedicated permanent cricket pitch a short cycle-ride from our house. I may have renewed sports fandom in my future. Ah, the crack of willow upon leather: how I have missed thee, my Hornby and my Barlow long ago!

Karen had a couple of utterly miserable days post-chemo, constantly sick and not at all interested in food. Ginger ale and water saw her through, with the aid of ginger candies; yesterday she had oatmeal for breakfast (how right was I, to bring steel-cut oats from California? *preens self*), a little soup for lunch and a little chicken and brussels sprouts for dinner. This morning I am making French onion soup and croutons, and we will see how the day plays out.

They're odd, these days. We're very detached from the world in here, and with Karen having been so sick we're a little detached from our own group as well. Everybody else had a roof-party yesterday, with real Mexican food and music; we lingered below in the backwash. We see doctors morning and evening, with Karen's shots; I go to the store as often as I can make excuse for it; otherwise we hang out in here, reading and dozing. We haven't even been watching much TV, though Netflix is a saviour and "Breaking Bad" turns out to be really rather good. I've been working on the Crater School - oh, and cooking, obviously - and I have The Count of Monte Cristo on my Kindle. An old friend, and always reliable. (Actually I think it a work of genius; our lawyer and I bonded over that, last month.)

With that first round of chemo having been so hard on Karen, we're anticipating a difficult second week, because the next round will be worse. But we're a quarter of the way through this whole process now, so that's a thing. And Karen will still be weak and immunocompromised, and it may be a year before she's fully recovered, but nevertheless. Our friends are awesome, and I'm there to do all the things, and with any luck it will all prove worthwhile. *nods affirmatively*
1 comment|post comment

Separate checks and balances [13 Oct 2017|12:00pm]
Day minus eight, or "Friday" in the common tongue: and Karen is ongoingly sick, except for the brief windows afforded by her anti-nausea medications. Of course we expected this, and in honesty it's not as bad as my worst imaginings; but over the last twenty-four hours she's taken in nothing but water and ginger ale, and most of that has come back out again. And of course she feels lousy, and of course I can't help. My prime function here is to cook, and she doesn't want to eat. I mostly eat in the other room, so as not to upset her further.

Other people in the group are having other symptoms, but I think Karen's the only one who's still throwing up. They say it should last no more than forty-eight hours, so fingers crossed.

In other news, there is no other news. During this stage of the treatment we don't have to go anywhere; the medications she needs are brought to us here in the apartment, in the form of injections morning and evening to stimulate her stem cells and encourage them to move from her marrow to her bloodstream, where they can be more readily harvested. Also she has many pills to take, but those are here in our little blue bag, ready to be supplemented by others from the little white bag at need and on instruction. Instructions come through the cellphone we were given; we are a WhatsApp community, chit-chatting back and forth from our separate monkish cells. That's probably why it's called a cellphone, right?

There's a communal area up on the roof which is actually rather nice. Views of Popacatepetl and so forth. Karen's not up for going there just now, but hopefully in a day or two, when she's feeling better. Meanwhile I shop and work and noodle on the internets. And scratch. I have mosquito bites all up one shoulder, and it turns out that mosquito bites are itchy. They itch for days. Who knew?
2 comments|post comment

Time was away and somewhere else [11 Oct 2017|10:07am]
We count the days differently, here in the Clinica Ruiz. Monday was Day Minus Twelve; if today is Wednesday, as I earnestly believe, then it is now Day Minus Ten. Day Zero will be the start of the rest of Karen's life, when she receives her stem cell transplant. The countdown from now to then is all about preparing for that day.

Monday was a day of driving back and forth all over Puebla, for measurements and tests and consultations in numerous clinics and hospitals. I have been in three cities - Taipei, Seoul and Mexico City - each of which I was assured had the worst traffic in the world. Puebla's is certainly not a competitor, and yet... I'm not actually actively scared out there, because our driver is awesome and native to this place, but it ain't good for me. I get hypervigilant and stressy, when cars are flying at us from all angles and seemingly with no regard for their own likely survival let alone ours.

My prime task here as Karen's caregiver is to keep her fed. Given that I've been doing that for the last five years or more, I was weirdly stressed about having to do it here - strange city, strange language, strange kitchen, strange foods, yadda yadda, not to mention how the treatments may affect Karen's appetite or internal economy - but I have found my happy place. The kitchen is no better than I had expected and in some ways rather worse - I have never before encountered a corkscrew that is actually not capable of opening a bottle of wine - but the shopping situation is much, much better. Just around the corner from our apartment is a store called Mega, which appears to sell everything. Certainly it sells enough to keep me happy and active for a month. I have no idea how much money I'm actually spending, but I've decided not to care. So far I've been to Mega three times in two days (including one emergency dash for a corkscrew, which I did of course not know the Spanish word for, but my mime of a man opening a bottle of wine was apparently outstanding: the nice guy I performed it for smiled broadly, practically took me by the hand and led me all the way across store, from the wine section to the kitchenwares. Me, I think they're missing a marketing opportunity: a few fancy corkscrews distributed among the wines, cigars and fancy charcuterie would find a ready sale, I suspect), and I expect to go back on a pretty much daily basis. I love it there. They have whole aisles of gourmet food, imported from all over.

Yesterday (Day Minus 11) we got to meet the great Dr Ruiz himself. He was professionally charming, swift and efficient: everything was fine, so treatment could commence immediately. Happily the same was true for the others in our group (we are Group One, so obviously best, and there are four pair of us: a couple from Aruba, a couple from Florida, an aunt-and-nephew pair from Norway, and ourselves) so we all trooped up to the chemo room for the infusions thereof.

Nobody's hair fell out, nobody threw up, nothing nasty appeared to happen at all. Two hours of actual chemo was followed by three hours of something designed to protect various internal parts from damage. I finished a Crater School chapter, Karen read, everybody except me talked quite a bit. It's a bonding experience, this whole thing, a community effort. Which I guess is partly the point of dividing us up into small groups. Us and our driver just exactly fit into our van, and we're all in the same accommodation block. Once we're settled into the rhythm of the thing, I anticipate wild parties up on the roof terrace.

Today we're back in the chemo room for a second treatment, the same drugs over the same five-hour stretch; but after that we're free for the day. And the really good news of last night was that our luggage finally reached us, after three days without. We get to wear our own actual clothes again, rather than whatever-we-could-find-in-Mega; and in my case, for I am an idiot, I get to take my own actual medications again, hey-ho. Hereinafter Softly shall take charge of those, in my carry-on bag. When in doubt, rely on the teddy bear, that's what I say.

My first intent, on returning to the apartment this afternoon, is to sharpen the bloody kitchen knives, I am just sayin'.
post comment

Mexico, we are in you [09 Oct 2017|07:45pm]
I suppose the getting here could have been more fun - for values of "fun" that include running everything down to the worst imaginable setting - but it's hard to see how.

We set off at oh-god-early, courtesy of the lovely Laura's picking us up and dropping us at San Jose officially-international Airport. In fact we flew to Dallas, Texas, which is not quite another country despite rumours to the contrary. There we waited for our tiny plane to Puebla - and while we waited Karen nodded at a couple of women in wheelchairs and said "I bet they're going to Clinica Ruiz also." And then defied all the laws of logic and common sense by, y'know, going up and asking.

And was right, of course, so we had companions: onto the plane, and settling down comfortably, and getting the safety talk - and then getting the pilot on the intercom saying that Popacatapetl had erupted, and Puebla airport was closed because ash-plume, and please would we all get off his airplane now.

So we did that, having little other option; and the nice competent organising lady said there was a flight leaving for Mexico City in an hour and would we all like to be booked on that instead? So there was a general outcry of "Yes", and she started rebooking forty people one by one for a plane just about to start boarding on the other side of the terminal.

When there were twenty minutes to go, while Karen was still trying to persuade our phone provider that they really should let us call Mexico and warn the clinic that we were arriving at a wholly different city, the nice competent organising lady figured out that all these disabled people needed priority rebooking and a speedy cart to whizz them to the gate. So we got that, and arrived in the very nick of time, to find them holding the gate open for us in an almost literal fashion.

So we plunged aboard, and flew to CDMX (see? I have not forgotten all my cool!), and wandered insouciantly through immigration (I suspect they very rarely turn away that many people in wheelchairs) and arrived at baggage claim to find that our luggage had not in fact made it onto the plane. So that was an hour of standing in line and filling in forms and not really believing him (fortunately, as it turned out) when he said that the bags would be flown in tomorrow and delivered to the clinic same day.

And then at last we exited airside to find our lift waiting for us, and we hauled aboard the van and drove the two hours from CDMX to Puebla, and if you ever hear either of us complain about California roads again you may swat us abaft the ear, because oy. Also ow.

And then we were here, in this interesting apartment, with interesting days ahead of us - the first of which was due to start five hours hence. And of course we hadn't slept the night previous, and of course we weren't going to sleep this night either, so we duly didn't. And today has just been exhausting, but that tale must wait until tomorrow, because chicken, wife, wine, etc. G'night, all.
2 comments|post comment

Only twenty-four hours from Puebla [07 Oct 2017|03:17pm]
This time tomorrow, we'll be flying into Mexico, where Karen will be harvested of her stem-cells prior to having her immune system killed off with chemotherapy. Then her stem-cells will be reinserted, her immune system rebooted, and maybe she won't have multiple sclerosis any more.

It's a month of radical treatment, during which time we'll be pretty much isolated within an apartment building and together twenty-four/seven.

I have no idea how this is actually going to play out, but one scenario says that we are going to find time hanging heavy on our hands. I do have a tradition of blogging about foreign trips; clearly this one may lack external input, but nevertheless, it is possible that I might revive this journal for the occasion. (For clarity, I never chose to abandon it; it just turns out that I can only maintain one social-media presence at a time, and Facebook is better for staying in touch with the communities I left behind me in the UK. Hence this has kind of gone by the board - but it's so much better for long-form blogging, maybe I shall revert. Maybe. Watch this space.)
5 comments|post comment

Briefly, it's all turned upside down [13 Jun 2017|10:49pm]
So I was going to write a long, thoughtful post about search and research and discovery, about possibility and risk and hope - but I'm stressed and anxious and exhausted, and I've spent the day doing scary bureaucratic shit, and that's just not going to happen. I'll hope to come back to it later.

Meantime, here's the tl;dr:

Karen is booked to go to Mexico in early October, for a chemotherapy/stem cell transplant procedure that should reboot her immune system and stop it eating her. Yes, Victoria, there is a cure for MS. The chemo's really nasty and of course nothing is guaranteed, but. We're doing this.

I say "we" because of course I'm going with her, though my citizenship interview might well fall into that window, and though my passport is expiring at exactly the wrong time so I have to try to get it renewed from five thousand miles away before we go, and yadda yadda.

The totally unsurprising thing about this procedure? It's horrendously expensive, as well as being life-threatening and in another country. And of course we have no money, because hullo.

So: there's a crowdfunding appeal up for the cost of the actual treatment, and you will find that here.

But it's hard to ask for something for nothing, and there are expenses above and beyond the treatment, and Karen has always been the breadwinner in this marriage and we have no idea what the state of her health will be afterwards - so I've rebooted my Patreon project as a fundraiser too. Subscribe to that - for as little as three bucks a month - and not only do you get stories about English schoolgirls on Mars, and recipes and more, but you also get to help cure Karen. Isn't that worth a cup of coffee a month? You'll find the Patreon right here.

If you can't contribute financially, spreading the word is still a contribution, and we'll still be amazingly grateful.
post comment

navigation
[ viewing | most recent entries ]
[ go | earlier ]