Peeking into the rock

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.

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.

Friday I decided that, since my blood counts were so close to normal, I could probably stop cowering before my exhaustion. I could spend less time napping and lounging in bed, and try to work up my stamina gradually (of course, this may be obsolete as of the first taxol infusion on Wednesday, we'll see). So I decided to dance more than I had the Friday before (seven dances instead of four, oh well, it's still more). And also to walk more. Yesterday in the late morning I took Zluta to Antonelli Pond and we walked almost a mile, which is not much but I'd been turning around way before that and we both had more fun. Then in the evening we went on the old rehab route around the soccer field, which is also almost a mile. And this morning! We went to Pogonip, met up with a Bernese mountain dog and her nice man, and walked to the place where the spring runs over the Spring Trail. Round trip: 2.8 miles. And I am no more tired at this time of day than I have beem, though my calf muscles are trying to get me to agree that they have been mighty today and deserve a medal (to which I reply, no you have not been mighty, you have been normal, all you get is this nice bed we're sitting on).

So I think I was correct in my assessment that I had reached the point where more resting was counter-productive. It's always a question with tiredness or pain: "does this need rest or exercise or both? How much does it need?" The most common answer, I think, is "both." And I think also, that with exercise, if it's not making things worse, it's making things better.

Meanwhile Blue Shield and Sutter are up to shenanigans again. A year after my first knee surgery I get a bill from Sutter saying that Blue Shield has paid everything they're going to pay and now I owe 400 dollars. Of course I don't have 400 dollars. Even more to the point, last year I paid every bill I was given, and Blue Shield said I had hit the limit of what I had to pay in that year, so there's no reason for them to refuse to pay, and no reason for Sutter to expect me to poay instead. I've Twitter-shamed them both,because that worked before,  but since it's a weekend, they might not see it. So I may reply to my Twitter chain on Monday to make it new again.

Another nice effect of the morning's walk is that the Bernese mountain dog played with Zluta on the way and now Zluta is willing to crash. She coughed kind of a lot on the way back, which I attribute to dust on the trail.She's had this particular cough as long as I've known her. She doesn't cough often but when she does it's always the same kind of deep, honking cough that moves her whole body. She never seems to slow down after coughing like that. The vet thought when I first got ZLuta that the cough would be self-limiting and didn't indicate a bigger problem. I'll bring it up when we see her again, but I think it's functional, not easily treatable, and it doesn't seem to bother her except while she's actually coughing.

And now for some more writing!

The oncologist said my hair "might fall out, maybe probably, but can't be predicted." The nurses said my hair would fall out and recommended getting it cut very short in advance of the time--which they predicted would be a couple of days to a week after the second infusion. Also, the printed materials suggested the same thing. And when I asked my friends and family, not if I should cut my hair short, but whether I ought to do it as soon as I could arrange it or closer to when I expected it to happen, the consensus was to do it earlier rather than later, and shorter rather than less short.

So that is what I did. My wonderful daughter Emma came over as soon as we could arrange it and buzzed my hair. With electric clippers! It was really amusing! She took before and after pictures of me and they are good ones. I looked pretty cute in them both! I think the short hair makes me look even more Jewish than ever. In my mind I think that is a neutral value. I mean, it's good enough to look Jewish, but it's also good enough to look like other things too. She also brought me some very nlce headscarves to borrow until my hair grows in again. So I have been practing with the headscarves now and then to get a feel for how I like them. Apparently simple heascarves are the best, for me. Just tied in the back, or the ends brought round, twisted & tied in front, or held on with a hair tie. They all work.

Since my hair was already thin on top ("female pattern baldness" but not as severe as that sounds) I started sunscreening my scalp when I remembered. I'm supposed to be more sensitive to sun rays now, so I have appropriated K's 30 spf sunscreen he used when he worked for the post office and doesn't use any more.

Anyway, this morning--two days after the second infusion--when I was rubbing on the sunscreen, my hands came away all fuzzy and my first thought was not how alarming it was but how cool it was. This is rather indicative of how things are going in general. I credit the extensive preparation that the cancer team has given me and also the word CURATIVE right on my papers and also the fact that my side effects have been so mild and manageable. It's turned the whole thing from a dark and frightening journey into an adventure, rife with inconvenience but also full of discovery and meeting new and interesting people. I think I'm a little disappointing to my friends and family who want to jump in and help me but the main thing I ever want from anybody is to go on a dogwalk with me. I mean, I think they feel in their heart of hearts I probably need more than this, but they're too polite to insist that I must be wrong about my self-assessment.

I got followed on twitter by a cancer quackery bot, so I blocked them and made a general tweet that I would do the same for any more quacks. Some actress showed up on NPR promoting her book about how she made her husband refuse "conventional" treatment for advanced bladder and prostate cancer and treated him herself with nutrion and stuff. I don't know how the thing came out because I was offended and I turned it off so I wouldn't be yelling at the radio.

Well, I was going to write a food post too, but now I have to pee and take a nap. Then I'm going to get the cardoons, the mignonette, the clematis, and the purple flower that Ellie gave me into the ground, or die trying. I've had them all too long.

Phenological observations: it is jam season now. I made strawberry jam from the giant berries that came in the grey bears bag last week. I prefer smaller strawberries with no white in the middle, but they are hard to come by these days because marketing decisions. My sister-in-law is making apricot jam this weekend because her tree recovered from the drought this year and produced a lot of fruit. The yellow plum tree around the corner has started dropping plums so as soon as I can get myself organized I'll make yellow plum jam. My coreopsis and love-in-a-mist and some other flowers I can't think of now are blooming freely. The sweet peas that were in too much sun are completely down, but Robin my co-mother-in-law brought me a bouquet of deep purple, very fragrantr sweet peas and orange Peruvian lilies, a very dramatic combination.

And now I have to go because I am totally falling asleep and in danger of pissing my pants.

One last thing: you needn't say "fuck cancer" on my behalf. It does nothing for me.

My echocardiogram was entertaining and lovely (since I went to it fresh from the knowledge that I am NOT RIDDLED WITH CANCER and I can try for an actual CURE), and of course, as I knew, my heart is strong as an ox.

Yes, I knew it. But I also "knew" my biopsy was going to turn up scar tissue from the previous infections, so there you are.

Anyway, soonsoon I'll have lots to say that aren't "oops my health" or "at least my health isn't that bad."

Zluta continues to be a manic darling, and the garden is fantastic at the moment. I'm cooking up all the turnip greens over the next couple days because a friend of mine gave me a Black Krim plant so it's tomato planting time. I really want to find a couple Paul Robesons and maybe a Black fromTula. Detect the pattern? Black tomatoes from Russia do very well in my garden. And my old standbyes, the yellow plum and Roma, don't seem to do so well for me any more.

My kale from last year is starting to go flowers. I do have other batches of kale started so there will be little gap  between productive kale, which is important because both Zack and I depend on it. Right now I am eating the kale flowers, they are delicious, but eventually they'll come to the end and so it goes. My parsley is all bedraggled because most of it has decided to set seed also--also eating those bits to try to slow down the process, which worked for a while but a lot of the parsley is only putting out those weird "I'm going to seed now and you can't stop me" leaves-- there are two kinds, one is a tiny stunted version of the normal leaf and one is entirely different, with narrow leaflets in a fan shape. So I'm finding baby volunteer parsley and moving it to the parsley forest and I'm sowing seeds in the area too. I've been working on increasing the flower real estate in the yard, and that's finally paying off. And of course it's spring, so. I have yellow Louisiana iris and calla lilies for the dramatic, and volunteer(!) sweet peas, and coreopsis and freesias (not many) and roses and cuphea (sort of like fuschias, which are not flowering at the moment, oddly), and a couple kinds of salvias and a few quince blossoms and some pansies and cineraria and bleeding heart and of course the lemons are blooming and the apple tree just finished and the plums are the size of shooter marbles which is apparently my favorite size at which  to notice ripening things.

Manymany thanks to all the well-wishers and most especially to the horse people who answered my questions. Later I may ask you to read the thing over (it will be shortish, about 50K?) and see if I screwed it up. This is the story that gives me an excuse to listen to all the Southern European and Asia Minor music I want to all day long. Especially if the music is a bit ovfer 100 years old. Seriously, you can find that sometimes.

On a less brilliant note, "the computer" is still returning the false information that Blue Shield is my primary provider, so confusion still reigns. It means Central California Health Alliance denied coverage in the first round even though they have already told me on more than one occasion that they know they are my only provider. It will work out but why should everybody have to do everything over again so many times?

well, the 9:05 goose from the north has gone by, so back to work.

Every bit of information I have gotten since that first partial pathology report has been boring. That's good. I do have a fairly rare and aggressive type of cancer, but it's not more aggressive than other more common cancers, it doesn't appear to be growing fast, it has given no evidence of having spread anywhere, and it has helpful receptors and it  doesn't have unhelpful ones. So therefore my treatment plan is really routine. I will have a wee bit of a lumpectomy and the lymph nodes connected to that part of the breast will be removed too. If all goes well, and there's no cancer in the lymph nodes and the piece of flesh that's removed looks like it has a good margin around the tumor, I'll get a course of radiation and five to ten years of a hormone-locking medication. If there's doubt about the margins, they might go in again and remove more tissue. If there's cancer in the lymph nodes, or if no cancer in the lymph nodes but there's dangerous looking genetics in the removed tissue, I will also get a course of chemotherapy.

Everybody seems to think this is walk-in-the-park level of treatment, by which I mean, i'm not expecting tremendous amounts of side effects--some, of the type we associate with these things, but not a lot. And no disability to speak of. Which is frustrating the hell out of friends and family who want to do things for me. All I need is three rides the day of the surgery and someone to walk the dog that day and the next. After that--I'm a boring normal person.

It's all a bit anticlimactic, but I'm not complaining.

On another front, doves sat on my skylight for half an hour yesterday, giving me a lovely view of their red red feet and their fuzzy feathery butts, but it sure drove Zluta nuts.

I finished Longbourn.I liked it a lot, though I was kind of dissatisfied with the ending. But I often am. I know some of you people care deeply about spoilers, so suffice it to say that the ending felt a wee bit rushed and forced to me. But the main thing is that here is a richly detailed working class romance where the resolution isn't "take the porotagonist out of the working class." Also, it's a great antidote for the whole (in my opinion) corrupt Regency Romance thing. I think I understand why so many people love that genre, but my response is usually "I hate these people and I want someone to expropriate everything they own and distribute it to the workers," Not exactly conducive to enjoying a lighthearted read. Longbourn is not, by the way, lighthearted.

I also read a chapbook of Karen Joy Fowler's (The Science of Herself)and now I want to call her up. She lives in my town! She actually went to school with the nice fellow, and sweetgly contacted me after he died--she didn't know he lived her until she saw his obituary.

Right this minute, I have no reading agenda, I am editing a thing for submission and I want it done byu next week, so I can do the next thing, etc. I want to get these old things cleaned upo and ready to send away, and then clear the decks so I can go back to not-Poland after surgery.

I finally got a cost estimate on the surgery and it's a relief: I do not have to cancel after all. This is of course a terrible crime against men of property and Congress would like to put a stop to it.

The other good medical news is I rode my bike to physical therapy and back: maybe three miles altogether? I'm not sure. And it was fine, though I expect to wake up tonight with the screamies. I did walk my bike up the one substantial hill, but the physicfal therapist says with my knees, I really, really should. She approved of the venture in general, though.

Yesterday I was thinking it looked like I am in a period where I can have more function or less pain, but not both, and that I seem to have chosen more function for now. Today it looks like I can have somewhat less pain if I persist in  going for more function. That's also reassuring. That's how it was until about a year ago. More exercise relieved pain as well as providing more function, bu just not right away.

Oh, and on another front: aside from the rain giving up on us and retreating, we do seem to have entered early spring, by the particular flowers blooming (quince) and the busy behavior of the birds. Also, I can tell there is more light, and both dog and I are more ambitious. She and I went for a long walk at the Yacht Harbor yesterday. She had some trouble coming back up the stairs, barely enough to call trouble.

"Let's talk about death panels"

You keep saying that the ACA puts death panels in place to decide who's going to live and die.

I finished the second volume of the glass thorn series by Melanie Rawn. Now I have to wait for the library to get the third and fourth books. I never ever do this. And when I tried to tell Keith (my younger roommate)about why I liked this stuff, I couldn't describe it in a way that doesn't sound like bad books. But they are not bad books, they're fun. I've put the third one on request for when it comes in, but the fourth one, while published, is not even on order yet.

Now I'm reading Quantum Thief by Hannu Rajaniemi and oops it looks like it's part of a series too. I'm not sure I like it. I haven't thrown it against the wall yet. I won't, literally, of course. But it has a lot of elements I find annoying. All the post-singularity claptrap where whatever happens is because the author decided it would be cool, and the mechanics of the world allow for any damned thing whenever, that just irritates me. And I'm not into stories about "history's greatest thief" either. But in translation at least it's sort of amusing, even though I can't bring myself to much care about anybody, even the poor Quiets, who are paying for their longevity by taking turns being transformed into enormous hideous worker drones.

I'm also still slogging through The Coasts of Bohemia which is for some reason harder to get into than Prague in Black and Gold. I gather Derek Sayer, author of the first, is a decade or two younger than Peter Demetz, author of the second, and didn't leave during the Communist years like Demetz. I wish I could say that one or the other of them is more left- or right- wing, but I don't really have evidence as they both take a kind of Scheikian view of the Soviets as being just another of a long line of people who seem to have thought that Central Europe would fare better as clients of someone else. And also both of them are critical of Czech nationalism and clear-eyed about history's nuances. I would maybe say that Sayer is more bitter than Demetz, based on a few sentences here and there, but I don't even know if I can say that. I do feel like Sayer's point is "We Czechs (et cetera) are too much more important than anybody ever acknowledges, so there!" while Demetz's point is "these lands have always been diverse and polyglot, in fact the Germans and Hungarians got here a bit before the Czechs (etc, since apparently until Masaryk "Czech" really only referred to a certain tribe of Slavs in the region, and if you wanted to talk about all of them you said Slavs or Slavonians)." I may be being unfair the Sayer, I should be able to tell when I'm done with the book. It's not that Sayer doesn't address the issues of ethnic and linguistic diversity in Bohemia (etc), he does, and he addresses the question of "who the hell is Czech anyway?" which is a touchy one throughout much of the history fo the area. Because a lot of German speakers considered themselves Czechs and a lot of Czech speakers considered themselves German, or Austrian, or whatever the country was that was ruling them at the time.

On another front, my latest leg insult is not a blood clot. It may be something rather like sciatica. On a relatred front to that, I like the clinic arrangement. I like having these different assistants and other professionals to talk to, and I like the production-line fashion that they deal with admistrative things. I also like that when they ordered a doppler ultrasound on my leg, we didn't have to wait a week for the insurance to authorize. I didn't even have to take a paper. The PA asked me to make my appointment before I left the office because if it didn't work the first time she would pull strings. The doppler itself was amusing. The handheld device was set against my leg repeatedly and it made quiet little clicks each time until suddenly it went WOWOOSH which was the doppler we spoke of running through clear blood vessels. I couldn't stop laughing afterr that. Unfortunately, it doesn't make a nice tidy image for me to get a copy of.