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: (Default)
What I'm mostly doing now is taking crap upstairs and throwing crap out. I like to think I'm not a clothes horse, and I try not to buy crap, but stuff accumulates when you're passive.

I am fortunate to have the attic area to put things into. Since my closet isn't finished yet, I have put three laundry baskets!!! of hangable clothes right inside the attic door, along with a box of hangers. I am also moving some just plain stuff into the attic -- things I don't want to go through, things I know I want to keep but I don't want to access all the time, and four boxes of children's books that will go in a particular shelf that has not been built yet.

I have put my folding clothes into the drawers in the bed that used to be Ted's and into some of the drawers in the wall that used to hold my clothes. I do not understand why, after a year of throwing things away and not buying things, I still apparently have more than I started with. I have subsumed some of Ted's clothes, but not that much!

For example. My underwear, swimclothes, pajamas and socks used to go into two drawers that are smaller together than the one big drawer I have subdivided with plastic boxes. I swear I could close those two drawers. I have culled a bunch more socks, also ironic because for the last year I have been desperately search for socks everyday, and now I find I have too many. Well, I stole all the socks that Emma thinks are too juvenile, so that's explainable. But as for underwear -- I haven't bought any in a long time, and I have been throwing pieces out because they were two worn out and discolored even for me.

Anyway, you can see the (very very dusty) floor in the former kid's room, but I haven't been able to sleep there in a week because I was using the bed for a staging area. The upstairs masttress needs cleaning before I can sleep on it -- not to mention all hundred pounds of it need to be dragged upstairs -- so I've been sleeping (badly) on the couch. It's okay for a nap, but a full night's sleep is not possible since the dog insists on sleeping with me even when it's obviously not possible. I'll have the downstairs bed cleared off for tonight, I think, and sleep a bit better.

I've been sweeping the floors that I expose, and sweeping my room upstairs when I track dirt up there, but everything's still very dusty. And there was a rat skeleton, which I think Truffle found somewhere, so naturally I'm coughing from my stupid reaction to the epithelial tissue. No welts were my hand landed on it though, which is a mercy. (Come to think of it, I never got welts on my hands from the pet rats back in the day -- only my shoulders and arms)

Now I have to go find a steam cleaner to rent, some paint for the walls and for the floor of the closet, replace the wrong hinges I bought, and let's see, dog and cat food too.

I hate the way my throat feels, though.
ritaxis: (Default)
Four inches in a day, maybe a half an inch since then. To put this in perspective: until now, we had five inches in the whole rain year (since July, but the season really starts in late October or early November), and we get thirty in a normal year. So two days takes us from one-sixth of our normal total to one-third, and also takes us from certain drought to possible drought (we have four months left to make the total). We're expecting rain for the next week.

But the spectacular thing about the storm system was the wind. It was hard enough to knock out the power lines for a million and a half people from Oregon to the Mexican border. Power at our house was out for about twenty-six hours, but we take that in stride. The thrilling thing was being at work and waiting for the last parents to come and get their children. We announced at twelve we were going to close by four, but one mother was stuck over the hill and southbound Highway 17 was closed by a landslide "somewhere between the Cats and Bear Creek Road" which makes us sound pretty remote and rustic, doesn't it? It's not the only way to get into the county, though, so she drove the long way round, south and through Watsonville and then back, and she got there by four-thirty, which isn't so bad. An older brother of one of the babies said "Well, why are you the last person?" And I said, "Somebody has to be." And that's the simple truth.

So our power was out so long because a major transformer blew. This happens a lot in high winds around here. Downtown got its power back by mid-late afternoon, so we went to the bookstore and wandered around some. I think our own little chunk of neighborhood must have also had a piece of tree on a line, which also happens a lot around here. PG&E (the power company, for nonlocals) had said "westside Santa Cruz" would have its power back hours later than we really did. Which begs the question of "what do they mean when they say Westside Santa Cruz?" Because sometimes that means everything west of the river, and sometimes that means everything south of Laurel Street, and sometimes it just means everything west of Bay Street. For reasons best known to themselves, the Google maps people have a map that obscures how west and south could be used interchangeably in our town, but the Mapquest map shows you what I mean. Anyway. So we got our power back maybe six hours before we were expecting it.

About thirty years ago it was all the thing to talk about undergrounding power lines, but it never happened here. I guess new modern subdivisions get underground power, but if you've got old-fashioned tarred wood power poles in your neighborhood already, that's what you've got for the foreseeable future. And power outages in high winds.

On another front, I was bitterly displeased to discover I had the horrible cough coming back Thursday so I went to the doctor on Friday morning and got a review of reactive airway -- which is apparently what they're calling my used-to-be idiopathic asthma now -- and doubled prescriptions on my inhalers. Also, it's not an "emergency" inhaler to be used only when I think something terrible is about to happen, but a "short-acting" inhaler I should be using pre-emptively whenever I'm not pleased with the feel of my breathing.

And -- it's working. mainly. I don't see how an inhaler is going to last me a month like this, but I feel like I'm walking around in a redwood forest -- I mean, my airways feel delicious. I still get the cough now and then, but the spooky icky "how can I possibly be getting enough oxygen when I feel like this?" thing is gone.

Unfortunately, it's way too wet to test my stamina in Lost Camp, but we're going to the Hakone Gardens in Saratoga tomorrow, always assuming that Highway 17 is open (or 9, which is a more wretched road but for somereason doesn't seem to slide as much).

pictures from today )
ritaxis: (Default)
We really don't get lost that much. It's just more newsworthy when we do. We've been going to Gray Whale Ranch a lot, for several reasons. We usually go in one of two directions which take us to where there are sometimes chanterelles, on the one hand, and where there have historically been huge drifts of craterellus ("black chanterelles") on the other. The place where the path takes off from the road is easy to get to, just beyond the west gate to the University. The walks are easy but good exercise: no excessive steepness, but a lot of underbrush. We're at a time in the year when there may be still some chanterelles and when the craterellus may bloom at any moment. We've found wine agarics there. The whole trip can be done in an hour and a half if we're in a hurry, like if it's lateish in the afternoon and we're trying to beat the sunset.

So the nice fellow thinks this is a good day to try going a little farther downstream. Nothing much. So we're going home. He says. I have this feeling, but I haven't been paying attention and I don't have any better suggestions and I therefore can't blame him for what happened.

After a while the nice fellow becomes convinced that he's lost. Honestly, we're in a spot we were in before, years ago when Zak led us to get lost -- he's famous for that -- but we've no better idea of its actual relationship to the trail than we did then, and if Zak were with us I doubt that he would know any better either.

The nice fellow decides that our best bet is to descend the steep ravine before us, cross the creek, and head back upstream on the other side. Again, I don't like this, but still, I don't have any better ideas. Descending was not so bad, though the ground is all loose from the fact that it's rainy season. Did I mention that it's about four o'clock and rain has been forecast?

Crossing the stream is no problem, as it turns out: nice rocks all across the bed of the stream almost as if they had been put there (hmm, in light of what followed . . . nah). I've stopped taking pictures because we're trying to get out before dark or rain catch up with us.

Getting up the other side, now, that's a problem. The other side is much steeper and the ground is much looser and right now I discover several things about my body: I'm panting and sweating like a person in heart failure: my ankles are turning: and I don't seem to be strong enough to pull myself up this slope, even with the help of twin walking sticks foraged from the forest floor and even going down on all fours. Yep, asthma strikes at the worst times, definitionally. Not bad asthma though: no cough, no wheezing, no godawful feeling like I was about to die: just the inefficient breathing and sweating. There's some unpleasantness here, with me kind of freaking out because the nice fellow's charging along way ahead and I'm sliding down as fast as I'm climbing. And then he gets sharpish and I'm more freaky and finally he gets it and comes back and stops berating me for not taking the direction he took (which was impossible for me), I get up the bank, and we're setting off on more manageable terrain. Barely more manageable, at first.

Did I say what beautiful forest we're traversing? It's intertwined fingers of mixed broadleaf (not deciduous, mostly: evergreen broadleafs like oak and bay laurel and madrone)and mixed conifer (pine and fir and redwood) forest. All green and lovely up above, all yellow and brown and orange and red and black and crumbly and mushroom-scented below. Except for the fact that we don't know how far we are from the road, or whether we're headed towards Empire Grade where the car is or Highway One which is a few miles downhill, and the anxiety over whether my body's going to stop functioning long enough to strand us, we're having a fine time.

After a false start following an old logging road till it petered out, we find a hint of a trail going uphill, upstream, and northeast, which is a better bet than going southwest at this point. And then --

We find ourselves on a hard, bare track, almost as firm as if it were asphalt. The trail has become easy, inclining gently -- my ankles stop turning, my breathing returns to normal and so therefore does my pace. The nice fellow points out the impression of a mountain bike tire. "Some crazed bike nazis come up here," he says.

I say, "They don't have to be crazed to ride this trail, it's so easy and solid."

A while later I have to agree with him about the crazed part, because the trail starts sprouting this elaborate jumps and ramps made out of fallen timber and cut-up pallets. Some of them look impossible -- they'd surely tear up the tires of any bike that tried to make them. There's lots of these. Each is unique, of course. We're sure that this must be clandestinely created by mountain bike commandos, possibly on moonlit nights. No pictures -- we're much happier about our prospects but we don't know how far we've gone or how far we have to go, and the higher we go, the bigger and darker the trees are, so we really don't want to risk sundown. We're walking as fast as we think it is sane to do.

Then the trail splits. But one part of it is a wide stretch of rotten asphalt, and the other is more bike trail, so we take the rotten asphalt, figuring it will lead somewhere. It does. It leads past a locked but easily bypassed gate -- with a sign that says "are closed," referring to the place we're coming from -- to an actual road, one lane, barely paved, which stretches off to the left and uphill and down to the right. We can't hear the main road, but there's a feeling that it's out there -- which we didn't have before. While we're studying this and feeling a strong pull to go right, the nice fellow hears a dog barking. When we got lost that time in Fall Creek, we headed for the dogs barking, and found the light of a house that way. So we go off down to the right in the direction of the barking dog, and we see a light -- a car! Nice cheerful lady informs us we are headed the right way to get to Empire Grade, and it's not far now. She seems to think our getting lost at Wilder Ranch is a pleasant amusement that everybody indulges in, like marathon running or something. Yes, I know, I said we went to Gray Whale Ranch but she said we were coming from Wilder Ranch. All I know about that is that they are both public land and they both stretch from Empire Grade to the ocean. And they're partly contiguous.

We came out on Empire Grade just a quarter mile or so up the road from the car. Walking back along the road is nervewracking -- it's winding, narrow, shoulderless and bordered by slippery ditches overgrown with prickly things, and the cars come around the curves at some outrageous speed (oh how I hate Locals on country roads!) but since we know where we are and we have almost a half hour of daylight left and it looks like it won't rain for hours yet, we're actually kind of ecstatic. The dog, who has been a complete darling all through this, is completely unnerved by the road, and wants desperately to bolt and run under some car's wheels.

But so, we're home, I'm tired, and feeling quite quite alive, thank you.

And, icing on the cake: the nice fellow pulled a tick out of my shoulderblade which had been there for days because I couldn't see it properly and assumed it was a scabbed-over burst pimple. The nice fellow found one mushroom that intrigued him -- he thought it might be a matsutake, but then he decided it was not, and neither were its many large neighbors under the huge tree with the elaborate treehouse built into it.

May 2017

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