Peeking into the rock

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.

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.