ritaxis: (hat)
I am low-energy, distractable, lazy, diffident, tentative, and easily discouraged to begin with. I began 2016 thinking I would ride the energy and optimism from my lovely new knees to Get Things Done, Get In Shape, and Get A Job.

I was doing pretty good until February, when I got the cancer diagnosis.

seriously this is just a long organ recital and for my own records, so don't read it )
So anyway, 2016 was for me like many others mostly a loss. I haven't mentioned much about the big world because others have more, and more eloquent, things to say about tt. I'm still alive, of course, and I still have a house. Also I have a pile of writing I'm sort of working on for several days at a time before I collapse in on myself for a few days again.
ritaxis: (hat)
Two weeks ago was my last chemotherapy infusion. I went one more than I thought I might because the week before was tolerable. But the next week was all "WARNING WARNING you're walking wobbly! your neuropathy is creeping up your legs! your hands and feet feel weird ALL THE TIME!" So we agreed it was time to stop. Supposedly I'm starting radiation real soon now.

So--neuropathy has subsided a little but if I walk for half an hour it gets worse in my feet and legs, so exercise takes some determination. I learned yesterday how to sidestep the need for determination. This is what you do:

1. Go to a network of trails that all loop back to the same place so you can't get truly lost.
2. Conveniently forget the "STEEP HILL" designation on the map posted at the other trailhead (it helps to choose the trailhead without the sign).
3. Blithely decide to walk a loop instead of going out a ways and turning back.
4. Blithely forget/downplay the length of the trail so you think you've gone more than halfway before you get to the "STEEP HILL." (which is actually in the moderately steep category, not the needs-walking-stick category) So when you get to the "STEEP HILL" there's no point in turning back.
5. Now you are stuck walking the rest of the trail, no matter how much you'd like to quit.

Actually this was the Red Trail behind Chaminade, which is only a mile and a quarter long, but it took forever (that means a bit over an hour, honestly) to walk it because Zluta had to sniff everything and hello, apparently I have breathing issues again after years without (damnit), so I had to take the upward part a little slower. It wasn't bad but it was dumb. I guess I should get an inhaler again, though I didn't need it yesterday, I just wasn't at peak performance. The good news! is that my knees continue to be excellent and I only even thought about them later and it was "huh, downhill, no problem!"

It was lovely though. Saw a huge cottontail and several brilliant scrub jays, and heard a woodpecker and some other bird which I guess I should call familiar-unknown, in that I've heard that bird a lot around here but I don't know which one it is. The trail goes through a pine flat, a meadow, and a redwood ravine, so most of it was shady. That's why we went there. It was only ten but it was already hot and I had enough self-preservation to avoid sunny exercise.

I already know I don't feel the heat reliably, so I have to hydrate & protect myself based on other information.

Other post-chemotherapy observations:

At some point where I didn't notice it, the rest of my eyelashes and most of the rest of my eyebrows fell out. This is still due to the adriamycin/cytoxan treatments which ended about three months ago, the taxol doesn't do that. Also my nails are still playing out their destiny. My thumbnails are loosening from the top down so they have these giant unreachable pockets that fill up with debris and I can only get them partly clean which is sufficiently gross. I keep experimenting with new methods, but they continue to look like they are bruised (honestly I did think it was bruising at first so my intense efforts to clean them started late). My toenails are working their way off altogether, but it's really slow and the new toenails are already completely formed before the old ones fall off. I've lost three so far, and there's another four or five looking like they'll come off in the foreseeable future, and a couple that look like maybe they'll just be weird forever.

My tastebuds are returning to normal but not as fast as my taste. That is, I want to eat some things that don't yet taste good, so I have some disappointments. My perception of salt which some people already thought was pretty odd is utterly hopeless now. I mean, most things taste to me like the salt got up and walked off the job in protest, but if there's enough salt for me to notice it's there it tastes poisonously oversalted. Normally I mostly don't salt food but enjoy the occasional pickle or pretzel. Now I want to eat some salty food but I'm disappointed every time. Otherwise, most food just tastes a little bland now, and the pervasive plastic taste that ruined everything is mostly gone. For a while water tasted really foul because of it, and I had to force it down to keep from being dehydrated.

You know how there's been a backlash against the hydration obsession fad? Articles everywhere telling you that you don't need eight glasses of water a day? Now I get people trying to tell me I in particular don't need to drink as much as I do (I drink between two and three liters, usually two and a half). They are wrong when they speak of me in particular, though. I know from years of natural experimentation (that is, days of not being able to drink as much as I need), that if I drop much below that level, especially if I do it more than one or two days, I will be terribly thirsty, get headaches, muscle cramps, and cognitive impairment. By the last I mean: if I haven't had enough water to drink, don't let me drive.

I had a kind of depressive episode the first week or so off chemotherapy. For months the infusion center has been the center of my life. Three times every two weeks, and then twice a week, I went there and chatted with the staff, got myself monitored, got myself cared for. I had no idea how attached I was until it ended. I'll be going back there from time to time for monitoring, but it's still an abrupt change. It got better as soon as I realized why I was wanting to sleep all day.

The other medical thing I'm doing is getting used to the BiPAP machine. I love the delicious air coming through the mask but I'm having trouble adjusting in some other ways. I have two masks. I thought I wanted the nose pillow because it was more comfortable than the nose mask the sleep tech offered me at the time of the study (at which it was revealed I was having 90 events an hour and desaturating to 83%). But my nose is a bit stuffy currently and so it is hard to breathe with my mouth closed, which with the nose pillow mask leads to a drowning sensation as the air goes the wrong way. And also the nose pillows kind of hurt my nose. I suspect the pressure on the machine is set too high too. When I use the full face mask the incoming air forces my lips open even if I'm trying quite hard to keep them closed. Even with the attached humidifier going I get pretty dried out too. And I'm having trouble with leaks. All of this will get worked out in time, but it's a lot of adjustment. Currently the longest I've kept the mask on is five hours, but I've also only had it for four days.

Of course I found an apnea forum. There's some true-believerism going on there, but the best thing is that somebody there wrote a nice piece of software to read the SD card from the machine so I can see the full record. Right now I'm finding that endlessly fascinating. I've learned that I do in fact have some possible central apnea going on as well as the obstructive kind, which was my belief from the beginning. It makes little difference in treatment, and the difference is already what the doctor prescribed. That is, he put me on the automatic bi-level machine, which adjusts the pressure so that the body is stimulated to exhale better. There are shenanigans to be done with carbon dioxide, but those aren't warranted unless the BiPAP machine doesn't work well enough. It looks like it will. But I think it will be a while before I am better rested and make more sense.
ritaxis: (hat)
When I got Zluta I got her for her personality. I've been telling people I got her because I knew she'd be a pain in the ass--demanding lots of walks and exercise and playtime. It's true. And she does. She demands a lot. Though as she gets older she also hangs out companionably with me for hours too. I've mostly convinced her that coming when called at the dog park is a lovely, joy-filled occupation but she has a new evasive action she pulls in the yard at night. I rarely let her out after dark because I'm afraid she'll mix it up with the wildlife (mostly rats, raccoons, and opossums, at night: but fox and coyote and even mountain lions have been seen within a block or two of the house. No, I live in an urban neighborhood, I promise, it's just that there's open space in it that connects by way of the San Lorenzo River and various other bits to highly-impacted wildish habitat).

But lately I've not always gotten the back door closed before I wander upstairs and she notices access to the dark yard. She goes out quietly and just hangs around until we cajole or force her inside. Sometimes I can't see her at all because she's ghosting around in the foliage and she seems to know this and keeps shtum for a long time. Once I find her she starts evasive maneuvers and will not come just because I call her. I can always flush her by throwing windfall apples in the opposite direction from where she is. She can't resist chasing them for long. It might take a few lobs before she falls for it though. Once she does that, it's only a matter of time before I get her on the deck by lobbing apples up there. The first one in that direction might not do it, but the second will.

She knows the jig is up at this point. You can see it in her body language and the fact that she drops her evasive efforts. When I catch up to her at the base of the stairs or on the deck she goes into the posture that says "I know you're going to pick me up. I don't approve so I'm not leaping into your arms but I will lift my body a bit to make it easier because that's more comfortable for me."

Last night she didn't sleep with me at all. This is interesting because she usually sleeps almost the whole night with me, and sometimes sleeps part of the night with my roommate K and part of the night with me. She slept on the livingroom couch downstairs all night, something I don't like to allow because if she wakes up alone down there she gets weirded out by some noise and starts barking in the wee hours of the night. Or if I get up to pee she hears me and wakes up disoriented and starts barking. But last night she was quiet all night--I know because I slept not one minute. Between the dexamethasone and a glass of jasmine tea and overeating from the stress of meeting the sleep doctor yesterday I couldn't even close my eyes. The sleep doctor was a weird thing. I have had excellent luck with all my doctors the last few years, in that I've not only like their medical practice but our conversations have been mutually pleasant. With this doctor, I have nothing to complain about as far as he goes, but I kept feeling like I was insulting him or making other gaffes in our conversation. It was exhausting.

At least my meeting with his scheduler was pleasant.

I'm going to have a sleep study on August 18. I started having my doubts about doing it now because of the chemotherapy and things like the dexamethasone adding their own level of disruption to my sleep, but Dr. Takahashi Hart said the information they'll be gathering will be informative either way and anyway they don't expect me to sleep well during the study. He says if I do sleep better during the study than at home, that's information too. Like I said, I felt that he was being polite and appropriate, and giving me enough good quality information and asking me for questions and opinions, but I felt like I was rubbing him the wrong way, which is an unsettling feeling. I did say I'm skeptical about sleep apnea because it sounds like a one size fits all solution these days, to which he said, you could say "but almost everybody wears eyeglasses too." and I said he had a point.

On another front, I made a plain cake (one of those buttermilk types though I used whole milk yogurt because that's what I have) and put lots of thin cut rhubarb in it and I think it is the most successful rhubarb thing I have ever made. I used more sugar than I would have because rhubarb, but I could have gotten away with less sugar. I'm pretty sure anyways. I can taste sugar again. Somewhat. Sweet things no longer taste nasty, flat and bitter. And kale tastes almost normal. But I still have a strange plastic taste in my mouth that makes me mistrust my senses.

There was a reunion potluck for Good Beginnings people last night, which is where I had the tea--I thought it wouldn't make any difference but zero hours sleep is substantially less than four! I hadn't seen some of these people for twenty years, but we fell right in and told each other our stories. I as always talked too much.
ritaxis: (hat)
If I was a fanfiction writer there is a thing I would do.

Last night I was high as a kite on dexamethasone (a steroid I take prior to taxol infusions so as to ward off the possibility of neuropathy) and I couldn't sleep at all. So having run in to the radio play of "Jacobowski and the Colonel," I listened to that. Being shorter than the Danny Kaye movie I imprinted on as a child, it didn't have all the bits, but it was good.

Today I'm thinking that if I were the fanfiction type, what I'd want to do would be an AU retelling in a science fiction landscape (because that's where I feel most comfy, no other reason), in which Jacobowski and the Colonel end up paired overtly, Marianne throws them both over for being two complicated to deal with and picks up with Szabuniewizc--this is almost canon, as the former two do leave together on the ship to London and Marianne and Szabuniewizc stay behind to wait for them in France--but also, along the way they lose the ridiculous macguffin of the idiot-ass plans and spend the plot development time breaking partisans and refugees out of capture and leading them to the Pyrenees-equivalents (as Jan Yoors was doing with the Roma family he adopted himself into)into the Spain-equivalent, so that the Colonel's bravery and ridiculous honor mentality and fatalism and Jacobowski's resourcefulness and flexibility and stoicism continually come into play in high-stakes action leading inevitably to an entirely different scene at the docks where it makes more sense for Jacobowski to be grandstanding with cyanide pills (which do not feature in the radio play unless I dozed off a bit there at the end).

Actually the thing to do would be to file the serial numbers off completely since the structure of the plot has now changed a lot in which case everybody can go back to having non-romantic relationships with a dollop of tenderness in there with the conflict. Also, Szabuniewizc gets to be much much more of a person! And maybe a woman.

On another front, my left hand feels funny right in the skin layer. I am noting this because I am watching for neuropathy because it terrifies me. I am thinking it is the amazingly dry skin I have there because of the taxol, and I am moisturizing a million times a day. But watching. And I told the nurse about it, though I said I didn't think it was neuropathy because of the area that feels funny, and because there is no numbness or clumsiness. I forgot to mention my wobbly legs after sitting too long on the toilet because I got lost in a phone game (Jewels Star Mineral, the only jewels game worth playing), but I don't think that's neuropathy either, I think it's pinching the sciatic nerve sitting like that in such a doofus fashion for so long. Recording it here so when I think about it again in the future I can find this date.

The hand-foot syndrome I previously recorded as being so very very mild has developed in a doofus way also. All the pain and disinclination to move went away pretty quick and then I thought I was getting away with nothing at all because the peeling took a long time to start. Now more than a month after the last adriamycin infusion the bottoms of my feet are quietly and painlessly--but grotesquely--peeling right off in great flapping sheets of parchment. I'm tearing off the easy bits so they can go into the garbage without getting all over the floor and into Zluta's greedy little mouth (yes, dogs are gross, so what else is new), and scrubbing with the brush after showers and sponge baths, slathering thick layers of cocoa butter on to them, and wearing socks all the time if I can bear it (sometimes it is too hot). My hands have a suede-like texture because the calluses are not so thick there and the peeling is very fine-grade, but as I said, I think it's making them feel odd. Not painful, not numb, not tingly per se, just kind of dry and prickly.

Other than a lot of missed sleep and incoveniently-placed make-up sleep and about two and a half days of delayed-onset excruciating abdominal pain last week my first taxol went uneventfully, and this week looks to be the same, though I hope for less pain since I did discover that tramadol helped a lot last time. I don't think of pain medication for sometimes quite a lot time, usually just planning to ride it out unless there are exercises for it. This is not always wise. If I had taken tramadol earlier last week I might not have needed to miss folk dancing again.

I just read that paragraph and it's not clear why I think last week was uneventful, especially noting that I didn't list the digestive upset. Maybe because the sleep disturbance and digestive upset are par for the course if you're injecting systemic poison into your carotid artery for a couple hours a week? And because it was clear they were self-limiting? And not really huge in the scale of things I'm concerned with at the moment?

Anyway, I'm not writing the Jacobowski and the Colonel rewrite fic, at least not now, but I'm pleased I can think of it.
ritaxis: (hat)
So my physical therapist walked me up my stairs to my bedroom and declared me fit to move back up in a few days, whenever. He said the stairs were a bit steep and narrow and to be respected, and we agreed that maybe early next week.

You know where this is going. Last night I decided I had had enough of sleeping on the futon couch in the library. It's narrower than the bed, it's not flat, it creaks, and I'm tired of the wee bit of a room it's in too. So I moved my pillows and my bedside light and my night-time surgical socks and a bottle of water (a steel bottle I refill, not a bought plastic thing) and I climbed into my beautiful beautiful bed. Which totally smells funny because of the mattress being made of some kind of unrefined cotton. By the way, I loaded up a box with those things and shifted them up the stairs a few at a time, so I could still use both hands to climb the stairs.In terms of stair use, I am exactly at pre-surgery functionality. You realize what this means: that going forward that particular function can only be getting better than before surgery. From now.

Anyway, I wish I could report that my first night in my own bed was a wonderful relief, that I slept two nice big lengths and only had to get up and go downstairs once to pee. Instead, I was awake all night. My two longest sleeps were an hour each. I was not in pain, though I may have been slightly undermedicated--that's always a possibility because of my bizarre pain threshold. I did have some digestive thingy, not severe, and the bright bright moon was shining right through the skylight like it had some kind of dorky message to deliver. Mabe that was it. Or maybe I was just too excited. Or I've reached a new status where I need more exercise to sleep.

It wasn't terrible, terrible. I spent hours doing leg exercises--little mild ones that go right to the edge of the rangfe of motion and no farther, which is wussy but I do a lot of those and only a little of the pushy ones anyway. Also I read two more books and now I have no library books. One was Bird of the River by Kage Baker, and the other was After the Fall, During the Fall, Before the Fall by Nancy Kress. The former was a lot of fun, and the latter was well-crafted, poetic and earnest.

I think someone recommended the Baker to me years ago, but I grabbed it on a whim because I was powering through my library visit so as to not delay K too much. I liked a lot about it. I liked that she posited a society which has gendered division of labor, but really different division of labor from what we're used to. It feels as if she took inspiration from real-life traditional women divers and then said "Well, what if there was more of this kind of thing? Which changes make sense?" And there's some unevenness to the implications of this, in a natural way, and there are also some occupations that are gendered more like we have experienced them, and some which are more permeable. I was a little less satisfied with the Noble Savage-not-Savage cultural essentialism going on with the greenis forest people and completely unsatisfied with the demons, but I gather that this is one of several books in the same world, and I expect some of my discontents will be addressed in other books.

She did really well in laying breadcrumbs for the adventure plot which was backgrounded for a lot of the novel, which makes me happy because that story would not have been as compelling to me for the foreground as the one that was, which was the protagonist making a home on the big river boat. The characters were interesting and mostly likeable. I did have two quibbles with the protagonist's characterization. I missed the place where Baker told us exactly how old Eliss is when she arrives on the boat, if she ever did, and the clues in the text were confusing. I know her brother is ten when they arrive. Eliss has been taking care of him for years because their mother, when she is not working as a diver, is a drug addict and also prone to getting into scrapes with the wrong men. She doesn't seem to consider herself old enough to work herself, so I was thinking she was under fourteen, maybe twelve, given the kind of economy the place seemed to have. But people are reacting to her as if she was at least fifteen, leading to my next problem...she's the very best, of course. She becomes the very best person to work in the crow's-nest, noticing all the snags and all the times the bandits are hiding in the bushes. There's a hint almost at the end of the book that there's a good reason for this, but it's not tied up in a nice bow ever. But also she's the prettiest. The person who tells her this in so many words is a boy who has a crush on her, so maybe it's not really The Prettiest Princess, but he's explaining why she's getting perved on all the time. (of course, anybody who's been a teenaged girl can tell you, you don't have to be the prettiest to be getting perved on all the goddamned time in all the rudest ways possible goddamn it). So those are marginal, and not that bad. I did like the book a lot.

The Kress--well, I'm not sure what to think about it. It's sort of like something you'd read in like 1979. But it was published in 2012. So I just don't know. It's a slim book, in which a small group of humans have been kept in a sealed environment for twenty years by entities that may be aliens, after the world has been pretty much destroyed by a combination of environmental disaster (some of which is possibly deliberately induced by spoiler spoiler spoiler), nuclear war, and stuff. Recently they have been equipped with a time machine that allows them to go into the past and pick up children and supplies. If you just read it as a story or maybe an epic poem, it's pretty successful--characters are interesting, you want to know what's going to happen next, and so on. It also works if you read it as an emotional response to the news. But even though the details of the science are nicely woven in, if you try to read it as an intellectual meditation on the scientific principles it references, you'll get annoyed. Well, I did.

Now I need to go to the library again, I guess. For that I will need to organize a ride, because I do not have the stamina to walk that far yet, and I'm not allowed to drive, and my physical therapist said I'm not ready to ride a bike anywhere yet thoguh if I can work out a way to safely get on and off a bike on a stand that is sturdy, I can do stationary biking. Though he said that at first I won't be able to puch the pedal all the way around, I'll have to piston it back and forth till I have more range of motion.

Sign of summer: breakfast was zuchinni and eggs, and dinner will be lasagne of sliced zuchinni and oh dear probably tomorrow UI have to pick the damn things again why did I plant two of them?

May 2017

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