The Mandelbear's Musings

Today I am a record. I am also grateful for...

• Still being alive. At this age that isn't necessarily a given.
• Having gotten out of Amerika in time. (Hoping I'll be able to go back and visit. But that's not a given, either.)
• Help. In particular, this week, help from pocketnaomi putting up four bookcases in the living room.
• Finding some beloved books and a few other things, in the process of unpacking. In particular, some songs I wrote at Carleton, and sheet music -- with chords -- for a song of N's that we'd both forgotten the tune for. It might have been performed once.
• Kids who remember my birthday, including an hour-long video call from my daughter E. (Still waiting to see if I get anything from R on top of the "in case I forget" email they sent a couple of days ago.)
• Support groups. It's nice to be among people who "get it". Different "it" in different groups -- widowhood in one case, cancer in another. But still.

Part 1.

Well, we're on our way to the Netherlands. We're somewhere southeast of Greenland as I write this. After a somewhat disorganized day of packing, during which I decided -- correctly, as it turned out -- that my nice new Travelpro backpack wouldn't fit under a seat, so I re-packed my drugs, headphones, charging gear, laptop, and shoulder bag(!) into my old red REI backpack (nicknamed Red, of course). Where they fit perfectly. And realized that the stuffable Eddie Bauer dufflebag I was using for my CPAP, jacket, etc. was going to be too awkward, so I re-packed that into my old MEI convertible backpack/suitacase, where it also fit perfectly.

That backpack is old. Older than my kids, I think. It holds about as much as my Travelpro 21" (or is it 22) carry-on. Which I checked. But it's a lot less densely packed, so it's manageable without wheels.

For some reason my laptop won't connect to the onboard WiFi. And N is borrowing my phone because she left hers charging in the car. So I'm getting by perfectly well on some preloaded DW posts, onboard entertainment, and emacs. I watched Everything, Everywhere, All at Once, which was just the right sort of madcap action and heartwarming ending that I think I needed just now. I decided on music rather than trying to break the mood by watching Dune. Maybe on the way back, two weeks from now.

The plan is to deliver j to his apartment in Leiden, where he will be attending University in the fall, spend the night with N in the Golden Tulip (where we stayed last trip), then spend the rest of the time in the Cove Centrum/Passage in Den Haag. (That's Dutch for The Hague; despite speaking less Dutch than a toddler at this point it's still easier to use Dutch for place names. Saves time in train stations.) We will be going back to Leiden occasionally -- j needs a new computer for school, among other things -- doing paperwork, and looking at houses. It's rather unlikely that we'll find anything this trip; we're booked into short-term housing in Den Haag starting in October.

Part 2

It's weird. As I mentioned last week, my brain seems to have turned a corner somehow, a couple of weeks ago, and a great deal of my depression seems to have lifted. I don't know how long this will last, but I'm not complaining. I don't think I know how to even talk about it. (See also, alexithymia.)

My cancer diagnosis and ongoing treatment may have something to do with it. I don't know long I can expect to live -- it could be anything between five and twenty-five years. Or I could get hit by a bus a week from now. But I've gotten used to the fact that I'm mortal. And, perhaps not entirely unrelated, non-binary.

We'll be flying over Ireland in a little while.

Part 3

... and now we're in Leiden, after a very long day. It's 10:30 am here. I'm going to post this and try to take a nap.

Today I am grateful for...

• M and J, for hosting an excelent seder on Monday.
• All the people on my care team at Fred Hutch and UW. Shout-out in particular to Dr. Sunkara, Elizabeth G., and the radiation therapy crew (who aren't listed as part of my team on MyChart, but are nice people).
• Intensity-modulated radiation therapy (IMRT), resulting in (so far) minimal side effects. (I assume they'll get worse, including after my last treatment a week from tomorrow, but note that brain fog and fatigue make good excuses for not getting things done, and I need a lot of those.)
• Dreamwidth. (I note that today is the start of Three Weeks for Dreamwidth.)
• Someone to walk with. Today in particular, thanks to m for the invitation.
• Apropos of that, Monkey Grind Espresso.

Today I am grateful for...

• Most mornings, waking up next to a purring Ticia.
• Sometimes having interesting things to talk about with strangers.
• Some very nice conversations (including with the dietician I saw yesterday, and a woman in the waiting room the day before. Who I saw again today, and learned that her name was Katy. I usually have trouble remembering names, but...)
• Learning that the background music in the treatment room comes from Spotify, suggesting "filk" as a genre, listening to Heather Dale. Treatment doesn't really take long enough to enjoy more than one or two songs; but I'm also thankful that it isn't longer.
• ( cut tags, because some people might not want to hear about cancer treatments right now )

Should I be grateful for rabbit holes? Probably not until my taxes are done.

Not a bad week, as weeks go these days, but not all that good either. There is reason for optimism, but also a lot of things to be pessimistic about, which are making it hard to get to sleep.

My sphincter control seems to be almost back to normal, as of Wednesday or so. I was feeling normal enough to start taking walks again, including almost a mile and a half with m and j. I read somewhere that every mammal from the mouse to the elephant can empty its bladder in 20 seconds except for elderly male humans with enlarged prostates. A category which included me for the past several years, but apparently no longer does.

And I attended E's Yule celebration Thursday. (The Yule ritual on Whidbey was last night, organized by G and with me, g" and k attending. We had cookies and a bottle of 10-year-old mead. I don't remember who gave us that, or whether we perhaps acquired it at an Interfilk auction.)

On the other hand, the place we had (Subaru)Stacey towed to does not do body work, despite what it says on their website. We were unable to find a body shop willing to accept it on short notice, so it's going to sit in front of our house until we do. Then it will almost certainly be totalled. That plus the fact that I should have started on selling Colleen's medical equipment two years ago mean that emptying the house out by the end of January is going to be a stretch.

On the gripping hand, I also had my first (of eight) accupuncture treatments (which was fascinating), and made an appointment with one of Fred Hutch's "spiritual health" providers (there must be a better word -- chaplains?), after a delightful conversation Monday. (See also, Wednesday's " State of the Bear" post.)

Good links for the week include The Future of Web Styling: Classless and Class-Light CSS | by Shalitha Suranga, and What Makes LISP Unique? | by Erik Engheim. Most of the others are discouraging.

( Notes & links, as usual )

It's been a week. It's been a long month this week. And I haven't been getting much sleep. I'll probably put the health details in a later post, although if you're curious you can probably find quite a few in the notes even with the bathroom log redacted. Blarg.

I did, very belatedly, realize that the spasms I'd been attributing to my bladder were from a different thing altogether, and caused by constipation. As are a lot of my urinary difficulties. (But if it hadn't been for that I might not have gotten into treatment when I did, so I'm not complaining. About that part of it.)

I still am not pleased with my body. Parts of it are still working, at least.

It's getting late, and I could probably add to this, but I want to get to bed. TTYL.

( Notes & links, as usual )

Today I am grateful for...

• Getting rid of that damned Foley catheter that's been plaguing me for the last two months. Not being in (nearly as much) pain is a win. I will note that ( the alternative )
  has a great many problems of its own, but on the whole it's a win, and this is a gratitude post, not a rant. I'll save that for later.
• Beginning treatment! I started Monday expecting to be scheduled for surgery sometime in the not-too-distant future, but went home having actually started chemotherapy. (It feels odd to me that testostrone blockers are considered chemo -- they're not what the word normally calls to mind.)
• My quirky and occasionally bizarre sense of humor, when I can find it. Being able to partially offset scary and unpleasant things by seeing humor in them helps a lot. Wry and/or dark humor in most cases, but whatever works...
• My care team. Which has many new members as of Monday.
• Telemedicine. I have three appointments next week; two are on Zoom and one is on phone.

Thanks to Thanksgiving, I think it worked out to being a pretty good week, modulo health problems and $A's customer service. (As for the latter, apparently "invalid address" means "the manufacturer won't allow $A to sell that product in your state". That's three hours I won't get back.)

The feast on Turkey Day was excellent. The niblings' other parents M and J) were here, along with N's foster-kids K, s" and g". J brought the bird, gravy, and roasted potatoes; I made my usual cranberry relish; and G made the rest. s" and g", who have been up on Whidbey, brought down apple and cherry Whidbey Pies, plus a (non-WP) pecan pie. Good food, good conversation, and Alice's Restaurant for after-dinner entertainment.

I stayed down in Seattle this weekend, rather than going up to Whidbey the way I usually do. It felt like slacking off, except that it wasn't really because most of my time and attention went into preparing for tomorrow's initial appointments with urological, radiation, and medical oncologists. And I spent some time on Wednesday making an icon out of an old illustration of the appropriate constellation.

In the links, Looking for the last universal common ancestor of all living organisms (the original paper is also linked from Friday's notes). Also, Metal clouds and liquid gems spotted in the atmosphere of hot Jupiter WASP-121 b may be of interest to fans of Cordwainer Smith (see also, story linked from last week), and Kim Kardashian’s Ultimate Nipple Bra is likely to be of interest to trans women and breast cancer survivors.

( Notes & links, as usual )

So... as of Wednesday, when the sale closed, I am no longer a homeowner, for the first time in almost half a century. So here I am, sitting in a house that is no longer mine, wondering what the hell I am now. ("Cancer patient" comes to mind -- I spent a large fraction of my time this week reading various relevant websites, not to mention other rabbit-holes.)

Now I have to change a lot of mailing addresses. (Already in progress, but more keep coming out of the woodwork.)

And now I have other things to worry about. Like whether R will ever get himself a job, and to what extent my (so-far undetermined) treatments will interfere with our moving plans.

Most of the best links are on Thursday. Crabs keep evolving to go from the sea to the land — and back again. Astronomers have found a planet with clouds made of sand, which isn't as intriguing as WASP-121 b, which appears to have clouds made of liquid metal and rain made of liquid rubies and sapphires. See also, On the Gem Planet by Cordwainer Smith.

( Notes & links, as usual )

Today I am grateful for...

• PET/CAT scan results being (as far as i can tell without an official diagnosis) much better than the worst case.
• New patient appointment scheduled with oncology. (See last week's mention of referrals.)
• Better leg bands. (But not on my thigh where I'd been expecting to use them.)
• My bin full of meds. (Too many to thank individually, and NO thanks to the conditions they're treating, with mixed success.)
• Dresses with pockets, and warm things to wear over them (also with pockets).