somniloquence

Hey, if you are going to theatres to see movies these days, I can highly recommend Sinners, with Michael B. Jordan, Wunmi Mosaku, and Hailee Steinfeld. It's about twin brothers (played by Jordan) who return to their town in Mississippi in 1932 to open a juke joint, and run up against vampires. I'm not much of a vampire person at all, but I think this would probably satisfy both the vampire loving crowd as well as the crowd like me, because the whole first hour is mostly a slow build of who the twins are and who the people in their lives are, and what's happened to them to make them what they are (not the least of which is of course generational trauma from racism), and also background for the character who becomes central to both their story and to the vampires' story.

The music is fucking off the charts amazing (Ludwig Göransson does the soundtrack and a lot of the music stuff) and worth it alone. There are two music sequences that left me kind of gobsmacked. I've never seen anything like it.

There's definitely gore and jump scares, but overall I didn't find it too horror-y, more like a modern monster movie in terms of the violence and such. It was definitely R-rated, with some very sexual scenes. Anyways, if you were considering it, I loved it. (It was directed by Ryan Coogler of Black Panther fame.)

The past month has been kind of nutty, both medical wise and work wise and even fandom wise. Too much activity, I am always fatigued and I cannot handle everything happening so much. And some of my dear friends are really, really going through it in their lives, and I have so little help to offer.

This time of year is always tough on me anyway. Wednesday marked the 20th anniversary of my twin sister's death, to the exact day even (she died on a Wednesday night, I'd been in her hospice room just talking with her, holding her hand, telling her what was happening on the TV because it was Alias night and she couldn't see well, so I was describing stuff for her, and then before it ended, she was gone, because she wanted to do something she wasn't physically capable of doing and it took the last life out of her). It's left me feeling very shaky. By Saturday of that week, we'd had a get-together at her house, which was way too many people, but friends of hers who'd moved away flew out just for that "service," a couple even coming from the East Coast on 24 hours notice.

So I always feel very bad as it is-- and it doesn't really end until after April, because Dad and I had to keep going down to San Diego to deal with the estate, get the house cleared out for sale, etc. I think the estate sale/garage sales we had were the worst, but there was a special hell afterwards where I had to clear out her office, which had at least a hundred photo albums full of people I didn't know, and I had to throw them in the trash. It was beyond awful, and Dad wasn't much help because of his physical limitations. Anyways, I wrote about all that back when it happened (on LJ, but the posts have been imported here), so I won't repeat everything, just that...20 years feels like nothing. Like I can see all the things clear as day and they still hurt just as much. There's a void in my soul I can't ever fill or see around.

I've had people tell me I just don't want to get over it. I don't know how to explain what being a twin, and losing one, is like to people who are single-birth folks; I don't understand what it's like to not be born with someone else, so I'm clueless about how to respond to those comments. They're just incredibly cruel.

When I had to go on Medicare, I lost my therapist, so it's been months since I've been able to talk to someone. I won't say he was the best therapist, but I still literally don't know what you're supposed to get out of it anyway, beyond having someone you can just complain to for an hour. But he left the group he was practicing with since they got bought out by the evil Optum (subsidiary of United Healthcare, whose CEO got shot in the street), and called me recently to tell me that the new group does take Medicare and he is now certified for that. I have no idea what Medicare will pay for, it's super confusing about mental health, or the supplement I have. But I have an appointment with him next week, so I'll see how it goes.

I thought I might have to have hand surgery because of arthritis in my thumb/base of my thumb, but for once the doctor (who I'd seen way back at the beginning of the pandemic for my left hand extreme arthritis pain, though he's now at a hospital instead of my old clinic: I guess the entire orthopedics department just up and moved over the Swedish hospital orthopedics when Optum came in, bless them) said "I have good news!" It turned out to be tendonitis--there's definitely arthritis in the joints, but in this case it was the tendons and sheaths being inflamed in a big way. He gave me a (very painful) shot in the joint at the base, and within a few days I was starting to be able to hold on to things again and actually turn the car key in the ignition. Yay! I had really been braced for the worst because that's almost always what happens.

Treatment continues apace. I've been down on the major number they look for, so it's possible I could get to that mythical remission stage, but who knows. To be honest, with the state of the world, I kind of wish the cancer wouldn't be so painful to just let me go off into that good night. The world's a shitshow. They're going after everything that will literally keep me alive. But I've never seen anyone I loved die without immense, horrific suffering, especially my sister. She suffered so horribly, as did Sandy, and I just don't know how or why those people who are said to "die peacefully surrounded by family and friends" get there, because it'll be painful for me, I think.

Every time I have plans to sit down and finish my Steve and Bucky in Wakanda WIP, I get an editing job with a terrible deadline. It's like some kind of summoning spell. I carve out time, the publisher writes me about a job, I need money, so...there it goes. I am fucking determined to finish this soon.

Hey, would any of you know why a bunch of my Dreamwidth icons suddenly won't load? I noticed it a few days ago when replying to someone's post, and the icon I chose just had a question mark in the middle and didn't seem to show up, even after I hit post. It's happening consistently with certain icons, and when I went in to look at my list of icons, a bunch just don't show up or they have the question mark. There's nothing different about them, I have a paid account and am under the icon limit, but they just abruptly don't work.

When I first went freelance, I did all the sosh meeds you're supposed to do to make sure your business is out there where people can find you. Of course that included twitter, but I always hated it and only kept it so that I could read a few people's pages, especially after they started making it hard to read without an account or being logged in. When that fucking slime mold took over, I wanted to delete my account, but they made it impossible for me, and for months I've been trying to get into it so I could remove it. I finally got in and deactivated it, and did set up a bluesky account, although I'll probably only use that as much as I used the bird site. I just don't love having this tiny character limit, and it's such a noisy interface compared to the aspects of tumblr that I like. The less said about FB, the better.

But anyway, if you want to connect there, I am under my wallet name, and since someone beat me to my preferred handle, it's not as simple, but it's my first name + the first three letters of my last name + B. (I used the B--or b, since everything's lowercase I guess?--because when my sister and I were born, we were going to be adopted, so for about five days, our birth certificates were just Baby A [her] and Baby B [me]. I still have these, and there was a period where I couldn't find my named birth certificate, but I had to replace my license and boy howdy, did no one like the fact that it just said Baby B. That was an ordeal, let me tell you, even with my social security card and everything else.) I'm definitely wary about that space, and I'm only following a few people so far since I don't know who all is over there. But if you are and want to connect, I'm there!

Today is steroids day, which means I won't be sleeping till at least 5 a.m. if I'm very lucky. Even doubling up on my lorazepam won't help, so since I have been bad about updating, it seems a good time to do it.

It still feels so weird to not be doing Yuletide this year! I'm on the pinch hit list so I see them fly by and every once in a while I think "yeah, i could maybe do that" but then when I see details, I realize that I'm all Principal Skinner and like "no, it's they who are wrong and I was correct not to sign up." I just wouldn't have been able to do the characters they wanted, because most of them have been focused on characters I wouldn't have offered. Tragedy!

I'm also getting used to my new chemo schedule--the only once a month thing feels so weird after a year and a half of weekly visits. I won't bore people with the details of trying to get financial assistance for chemo, but the switch to Medicare was such a clusterfuck last month and now with the dread of the incoming "administration" I'm pretty scared for my future on it, but eventually I was able to get my drugs all worked out, and now I'm just waiting to see if any of my treatment from the 5th, or my upcoming treatment, will be denied or approved.

Unfortunately, I think all that time trying to solve the issues may have contributed to my number markers going back up--I was plateaued at 0.2 on the magic number for months, and then I got some movement, and Dr Li started me on a new drug to see if we could shake it down to remission and I was pleased that before I even started it, I'd had movement down to 0.1. But my blood work on the 5th showed I was back up to 0.2. Bleh.

For some time, I have known I needed a new car; I love the Beetle but she is nearly 20 years old, and for a few years the passenger door had stopped responding to the electronic key opener, and then last year, the damn driver door stopped. So when I get in I have to lock/unlock manually, and if I have a passenger, I have to reach over and open the door. It's super inconvenient for things like groceries, and would have been intolerable if I was still fostering doggos.

I finally decided to take it in to my mechanic when one of the signal lights went out, and at first, I thought it would go okay, but I took it in Tuesday and it's still there. Apparently, they had to get the driver door part again because they were sent the wrong one, and that was after it took them most of the day to diagnose just where the failure was (it was apparently fine in terms of the signal going through but the latch portion was eroded and failing, so the signal wouldn't do anything). Then it turned out that there's a part of the latch apparatus that simply isn't made anymore.

There were never a lot of Beetles on the road anyway; it was never VW's biggest seller, which is why they keep cancelling them and stop making them. So there aren't any around of this little part, and VW doesn't offer them to shops, so...the guy spent like the whole day trying to find it at places that part cars out, and had no luck. The owner is going to try to make it himself this weekend, I guess. I...am not feeling hopeful.

The shop is small, and I had to park on the street when I brought it in, and when they move cars around in the bays and the little lot, they park on a busy street. Which is fine, but...this time not so much. I guess someone hit a bunch of cars, including mine, and tore off my drivers side mirror. I love the Beetle's mirrors because they have defrosters and shit on them, plus they're that kind that fold back. I wish someone had folded mine back.

Their insurance will take care of it, and they've already ordered a replacement, but it will drop my trade-in value to have had a major feature replaced, which bums me the fuck out since it's not a high sale or trade-in value in the first place. You'd think the fact that Beetles are kind of rare now would help the value, but I guess not. The mirrors aren't painted, so they will have to paint it after Christmas. I was trying to be philosophical, and I could hear the almost fear in his voice when he called me on Friday about all of this, but I seriously almost cried.

The only funny part was that I asked him "I know this is a really weird thing to ask--" and he was like "no, no, whatever I can do, please let me know" and I said "but I have this Jack in the Box antenna ball on my antenna, could you take it off and put it in, like, the cup holder or something? Even if it's behind the locked gate over the weekend, I just feel like someone would steal it and they're not being sold anymore, so you have to pay bucks for them on eBay and it's always been my--" and then I burst out soblaughing when I said it was my good luck charm. (I had actually had to replace my old ratty Jack ball earlier this year, which is when I learned how hard they are to replace. Antenna balls aren't a big thing anymore because most newer cars don't use antennas that stick up like that.)

I know I haven't been in any kind of emotional state for sadness since the election, but this whole thing has left me unbelievably down. Being without a car sucks in a city where you can't easily get places on public transport--my ex offered to loan me their Subaru, which they loan to their neighbors all the time so he's eager for me to take it, but I feel weird about it. He took me to the store far away Friday, but of course I forgot something crucial, and I just hate Instacart because they always fuck up my order, although the guy who did it Thursday was pretty good.

Anyways, if my car survives, it'll cost me a fortune and then I have to figure out how I can afford a newer car and pray that this tariffs shit takes a different turn. My head hurts just thinking about it all. Plus it's a new year soon, with all the insurance deductibles!

Christmas is soon and I will probably just be here on my own, hopefully finding some things to read in Yuletide. Blues seems to alternate between peppy and troublesome and listless and pained, and I do often wonder if we're getting to the end stages, but he is hanging on, so I will get him some special treats or cook something that he loves to beg for. I hope if you celebrate, you have a lovely day, and since Hanukkah starts on the 25th, if that's your holiday, I wish you love and light.

I would really like to send holiday cards this year, I think it might help a little with this depression. If I've sent something to you before, I probably have your address, but if you want to receive a card, I'm screening comments and I would be delighted to send you one. I still have some leftover cards from last year, but I hope I won't send repeats, though that's a possibility! Some of them are definitely Christmas themed, but if you would like to make sure to get a more generic one, please do let me know.

Ugh, god, I was so looking forward to sitting down and sorting out my thoughts on The Bear, especially season 3, and writing out my (as minim_calibre called it) Grand Unified Theory of Season Threes, and then this weird technology hell vortex swept me up and spit me out somewhere I had no access to the interwebs.

I got fiber optic a number of years ago when it first became available--I hopped on it immediately, like the sales people came to call and I was just like "yes, now, set an appointment immediately" and they were baffled and didn't know what to do without spieling their spiel. Century Link put in this giant hole in the side of my house, where the cables ran through into this big, heavy black box, which I never really knew what it was. I just thought it was the box that gave me internet. The first weekend, because I'd moved the black box slightly to clean up the mess the hole in my wall left, I lost internet because it turned out they used this janky, old-style system of like...speaker wire, if you know what that used to be: little copper lines all twisted together, covered by plastic, and then you twisted the uncovered copper end around a screw that carried the signal from your amp or whatever, or you poked the copper ends into a hole and locked the speaker line in.

The black box had about eight of these janky little teeny tiny microscopic speaker wire-type lines, and a bunch of them came loose that first weekend, so I had to have a repair guy come out and fix it. That should have been my first clue, I guess, that it was unreliable and chintzy, but all these years, I just was super careful never to touch that black box unless I had to, and it's such a short cable coming into the house anyway that it was easy not to move it, because I almost really couldn't.

But a little over a week ago, the box started beeping at me every 13 minutes, and I kept pressing this button and it would stop, but resume at the 24 hour point. So I decided to look at the box and despite how heavy it is and the super short cable, I could see that it was saying my battery was dying, but there was no way for me to change it. Unforch, by examining it, I pulled--you guessed it--the stupid janky wires loose and I could not for love or money put them back in. So I was only able to use my phone for cell data, because everything else in my house, including my iPad, is WiFi only. I asked minim if her spouse, who is an A/V god and has helped me before in weird situations, knew of any tricks, and they ended up coming down that night after dinner, and he brought his nifty incredibly tiny tools and this magical lighted magnifying visor, and put the wires back in, and I had interwebs again! They are honestly just the best. ♥

I also found out that heavy black box is actually a battery backup itself--and there's no way a regular person can change out the battery, which is basically like a car battery. He also told me that CLink stopped using it as the conduit for the fiber cable, because their household didn't have that when their fiber line was installed, even though he'd done all this prep for it.

But lo, the next day, the hellscape universe I live in decided that the line was going to stop working altogether. So CenturyLink, because they suck, told me, after over an hour waiting for customer service, that they would have a tech out in 9 days. I was supposed to just survive without internet for 9 days. The thing is, it used to be a luxury, but it's no longer something you can call a luxury, especially when you are self-employed and have no one to rely on for IT help. It's basically your life blood. Someone told me about hotspots, but I didn't totally understand it, so I set about trying to understand the concept and how to use my cell phone as a personal hotspot (the library checks them out, yay! but the Hold list to check them out is over 1,200 long, boo!).

And I could have happily gone to the library or Starbucks for a lot of things (I didn't have any new fanfic on my iPad! All my books had somehow been subsumed back into the cloud instead of downloaded! Tumblr on mobile sucks because it's a resource hog and I don't have xkit or adblockers on it!), and because I have been lazy as hell, I still had DirectTV satellite so I could at least watch some TV since streaming was out. Except...my iPad sucks for typing on and even if I use a bluetooth keyboard, it lags and is just generally awful, and of course, the night min and her hubs came down, my laptop had died.

Or at least, it was trapped in an install loop, which had happened to me once when I first bought it and it put High Sierra on and apparently there was some kind of problem for a lot of people where it would just try to install over and over again, but never get there, and you couldn't do anything to stop it. For some reason, even though I'd only set it to install a couple of minor, minor updates, it decided to reinstall High Sierra and was stuck there. So I couldn't take my laptop anywhere to get WiFi and do some basic stuff, including some unusual work stuff. I wasn't sure how well my desktop computer would do with a personal hotspot phone, but I was going to try when...it magically started working.

All of a sudden, the WiFi was working (just after the little IT-business guys I use when things go haywire came and took my laptop away). Like, I just didn't understand--all the lights were still lighting on the black box, etc. I was like, okay, well, I will wait to cancel my appointment until the day before, and just be good with that, but then as soon as I got my laptop back (all nicely updated on the OS as far as it would go for that much older model I have), and settled in to finish the streaming movie I'd had interrupted and scroll through tumblr, it went out again. The modem was lit up with all the right lights, everything seemed like it should work, but it wouldn't. So back to personal hotspotting, but at least now I could go to the library or Starbucks and use theirs, if my gastrointestinal issues would allow me out of the house. (That's been honestly one of my biggest problems: something I'm getting as chemo is just causing constant GI problems, and it tethers me to the house in ways I really hate because I can't always trust I'm not going to have a humiliating accident.)

Anyways, it annoyed me that the lights on the modem indicated things were okay. So eventually I unplugged it, and of course, as soon as I plugged it back in, things worked again. I'm keeping a weather eye out for it all, though. I did cancel the appointment for the tech person, because at the beginning, when I found out it would take them nine fucking days to get here, I called Quantum Fiber, which CLink is forcing customers to move to eventually anyway (I found this out after a whole other customer service issue a month or so ago, CLink sucks), just to see if they could come install a whole new thing anyway and skip the CLink drama, and they had the same time frame. But I was so disgusted and upset that I decided to go ahead and just do the Quantum thing, so they'll be here on the 3rd. It's not ideal, if this keeps going in and out, to be stuck like this for the next week, but at least now I have different workarounds and my precious old laptop is back.

I warned the Quantum people about the big black box, and I really don't think they understood what I was talking about, so a part of me is kind of...doubtful, I guess, that it will really be installed, but if I can pay less for slightly faster fiber optic and get out of this fucking shitstorm with CLink, that's what matters. It's amazing how hard it is to rely on cell data only (even if you have unlimited, they will throttle you over a certain amount of use) when you're trying to do video calls to your doctors or therapy or whatever, or hope there's nothing interfering in your signal when you live in an area that's notorious for cell problems.

Anyways, I still plan to sit myself down and write up a conversation about The Bear (and my Grand Unified Theory of Season Threes), but man, I am just...I am le tired. So, so tired, both emotionally (I literally burst into tears when the customer "service" person said nine days!) and physically (everything about treatment is just draining the fuck out of me). I am way too Old and non-technical to be dealing with this shit.

The past few weeks have been...interesting, to say the least. Shortly after the last time I posted a real entry here, I was having some bad GI problems, and could tell it was going to make me pass out. The last time I passed out in the bathroom, after I'd had some really horrific bleeding during Moh's surgery on my face for skin cancer, I severely injured myself (my bathroom's the size of a postage stamp), and so this time I was like, I will get down on the floor so I will be there when I pass out. I knew I couldn't make it to the bed.

Except, of course, I started to white out and then my ankle snapped out from underneath me, and boom, I figured I'd broken it. I couldn't put any weight on it. I managed to drag myself to my bed, and had preventively unlocked the front door for my friend Keith, because he was coming over. When he got here and *finally* heard me yelling to let himself in, I made him get my antinausea and antidiarrheal meds, and once I figured I could make it to the ER, had him take me there. Stupidly, I went to the one I went to last time, because I know it, I guess. It took over two hours to get x-rays, and then they made me get an EKG because I'd mentioned almost passing out (and instantly regretted it), and then they wanted to draw blood and get a urine sample (which...is almost impossible for people with female-type equipment to do with a busted ankle), and I begged them not to put in an IV because it was my week off chemo. They had a lot of trouble getting blood because I was so dehydrated by then, but god, was I glad I had stuck to my guns when after six and a half hours, there was no sign of seeing a doctor.

I have MyChart on my phone because of my situation, so I'd seen that no fractures were detected on x-rays, and some other people we'd been kind of camped out with, who'd come in before us, still hadn't seen a doc either so they were starting to leave in small groups. By the time one guy urinated on himself, his seat, and the floor, I was done. It really annoyed me because I didn't know what kind of soft tissue damage I could have, and the nurse had actually said, "We're more concerned about your almost passing out" but I was like "I'm not! It happens all the time!"

I did manage to get in to see the sort of floating internal medicine guy in my NP's department on Tuesday, miraculously, and he said there were probably some small tears in the tendons but he felt good about my lateral and forward/back movement. When I had my treatment appointment the next day, I mentioned all this to the ARNP, and she told me that it was actually very good that I'd told them about the almost passing out so that they would know it wasn't a "pathological fracture." Which...I was like "what."

Apparently, myeloma patients, since we have fucked up bone marrow and holes in our bones and stuff, can just get random fractures from things. This disease is so much fucking fun. Anyway, all of the medical professionals kept telling me it would take a longer time to heal, which is sort of true. I did my best to keep it wrapped and elevated and stuff (the RICE thing has really been rethought by a lot of people in the field), but of course, it was my driving foot and I live alone, so that was a lot of begging for rides and things, and using Instacart (which I hate, because my orders are always wrong) and food deliveries. I couldn't even go outside and water plants! (Too many stairs.)

I'm still plateaued on my myeloma lab work numbers, and have been wondering about what it looks like to just stop treatment, what happens in palliative care, etc. And trying to figure out when/how to broach that subject with Dr. Li. There's just so little I can find, everyone is desperate to stay alive no matter the cost, and whenever I think I've found a good "stopping treatment" post, it turns out to be about stopping treatment of Drug X. So it's a conversation I probably need but I got pre-empted by Dr. Li last week when he said "We should probably talk about next steps." That is NEVER a good sentence when you have cancer.

He wants to use a different drug to shake loose the holdout, really strong myeloma cells. He'd told me before that my M protein spike (the magic number thingie they look at to determine remission status) went down super fast because those were weaker cells, but now I'm stuck at 0.2 because those are the really strong cells that keep replicating and are much harder to knock out. He wants to use Cytoxan, which I am extremely familiar with because I watched it destroy my mom, my sister, and a friend. Like, the brutality of what it did to my sister is just...it's really hard for me to talk about. I can't even talk about my twin without crying, anyway.

He said it would be a low dose, but it sounds like a lot of pills to take at once, and the side effects are still losing your hair, extreme nausea, and extreme fatigue. As shallow as it sounds, I don't want to lose my hair--I'm too ugly to rock a bald look, and when I was losing my hair last fall from the shock to my body of treatment, I was surprised at how much it affected me. I had so many flashbacks to my sister sobbing uncontrollably in the shower as her hair came out in clumps, and I was unable to do anything to help her. And you know, I'm already dealing with nausea and fatigue, and I have to take care of myself, there's no one here to help me and being so fatigued I can't get out of bed...well, how the hell is that supposed to work when I have a house and a cat and myself to take care of.

I don't have to make a decision right now, but I have no idea what to do. I'm so fucking tired. In my last post, I talked about that, but I'm just...so sick of going there week after week, and nothing changes, and I said at the beginning I didn't want to prolong my life at the expense of suffering and I was assured that treatment for this disease wasn't like it is for other cancers, so I wouldn't be "losing your hair and barfing your guts up" but here we are.

Anyway. Today is the worst of all holidays, Independence Day, which no one calls it that anymore, it's just Fourth of July but I always think that sounds so much dumber. It's just a holiday for assholes, so I'm girding my loins for all the exploding shit and finger-losing, eye-losing, house-burning shenanigans tonight and trying to make a cozy hiding spot for my little decrepit old man kitty. (I will of course be doing my annual ID movie watch of the first two Captain America movies.) At least we have something to take the edge off things--I'm glued to the UK elections. I hope the fucking Tories get obliterated, though I know they probably won't. The problems, like ours, are far too deep-rooted now after all these years to fix easily even if someone decent gets to be PM (which clearly Starmer isn't), but I feel a little more hope for you guys than I do about our tire-fire clusterfuck over here.

I really want to talk about The Bear season 3, does anyone else want to if I make a post?

I have been so long overdue for an update on things that I don't know where to start. I was intending to kind of use this place as a diary of sorts, to keep track of things with the cancer, but it seems like I just fell off more due to malaise than anything else--it'd be nice to be able to say I was just busy with chemo, etc., but the truth is that when it comes time to write down what's happening, I just...don't.

Partly it's because it's very boring in a lot of ways. I go every week to the clinic for injections, and I take the pills I'm supposed to take, and I get blood drawn and check my numbers when they come in, and I fight fatigue and GI issues and the neverending pain, and that's sort of it. It's been about a year now since I started the chemical portion of treatment, and since this cancer has no cure, that will be part of my life for the rest of however long I'm around. (Proof that my ex, who has taken me to treatment multiple times, never pays attention to anything I say: He's asked me a couple times when I'll be finished with chemo, and when I asked him "do you even know what's wrong with me?" he went "...some kind of...cancer?")

A while ago, I "graduated" to being able to go to treatment for three weeks and then one week off (of course, the week off never coincides with the week off from Revlimid, the obscenely expensive drug that I have to take), which my oncologist thought might help with the awful neuropathy in my feet, but it didn't. I'm still grateful to have the week off though, especially since it comes after the infusion of zometa, the bone drug, which usually makes me feel really shitty. Apparently, most people don't have the reactions I do to it, so that's fun, because no one knows what to do about that.

I was rewatching Elementary, because that was the only Sherlock Holmes thing I've ever enjoyed and it seemed like a good show to have on in the background while I worked, and I got to season 3 and there was this scene that I remember being so impressed by Jonny Lee Miller in, but this time seeing it, it hit me in the gut like a punch from a heavyweight boxer. He was talking about his sobriety, but it couldn't have been more perfect to describe how I feel, the tediousness and the general sense of pointlessness. I'll put the video embed behind a cut here in case you don't want to see it on your feed.( Read more... )

I think it's hard because most of the people I've met in the myeloma support groups have kids/spouses/sibs/parents even sometimes, and so they can be almost aggressively positive at me about having reasons to live. But you know, my family's all gone, and friends move away or drift away, and it's not only harder to make friends as an Old but then you throw in the cancer thing, and it feels like your life is so small. There's a person on metafilter I've gotten some good advice from who also has multiple myeloma and she said something I thought was really good, in response to a person dealing with a very difficult diagnosis of a cancer I've had before: "People who do not have cancer simply don't get it - no matter how great their intentions. You could update your friends on every bit of news, every single blood test, detailed accounts of every scan, and they still would not understand the relentless nature of this - what it's like to truly be facing your own mortality, to live from one bit of shitty news to the next, to finally get good news, but find yourself waiting for the other shoe to drop. And especially what it's like to live like this for years and years."

I think you can extend that to a lot of serious, chronic illnesses and disabilities, too. Ugh, I didn't mean to be such a downer, it's just very much where my head is at. I think because right now, they're doing a lot of the tests that I did a year ago, to see where I'm at--MRIs, and such, and I can tell that my oncologist wants to have me do another bone marrow biopsy, which is the only test I'm really afraid of because last time I ended up having whole-body muscle spasms later, and I thought I was actually dying.

But you know, it hasn't been all awful. Of the good: I got my cataract surgery done! I see reel gud now! The place my eye doctor wanted me to go to was such a clusterfuck, and I finally got a referral to another place, and my eye doc said I won the lottery on my left eye because it's absolutely perfect and the best change he's ever seen. My right still has an astigmatism but it's not bad, and I chose distance vision so I have to wear reading glasses to see anything even a couple feet from my face, but it's such a trip after being almost legally blind to suddenly be out here seeing with no aids. I have a pair of just wearing around progressive lenses and a pair of computer glasses, but the lenses are completely within the frames instead of sticking out an inch, and I just find that wild. I also do have a secondary cataract in my right eye, but they warned me it would probably happen because of the dexamethasone I take, and I'll get that zapped (it's just a quick laser blast, I guess) this summer.

I got to see killabeez last month when she came up to help her parents out, and that was wonderful. It was a gorgeous day and we had breakfast at a cafe on Alki beach, and then walked along the beach and soaked up the sun.

Blues is still hanging around and being his usual awful feline self. His kidney disease has advanced very quickly, to stage 3, and he's very thin and now I know how some of my doctors feel because I sometimes can't get him to eat even things he used to love and I'm always like Mrs. Claus in Rudolph, "eat, eat, Papa," but just like me, he isn't as interested. He ran away the other night and scared me half to death, so he's still got some pep, but I am trying to come to terms with the fact that it'll be sooner rather than later. He's really the main reason I'm doing any of this treatment stuff, so I'm not sure what will happen after that.

I signed up as usual for Into a Bar, and I got, as I often do, the one character I don't know what to do with, so Bucky Barnes is going to meet Fak from the Bear, and...we will see what I can do with that. I really haven't been writing much at all, outside of birthday/Yuletide obligations, but I'm actually hoping I can finish the WIP I was posting before it seemed like I faded away. I know no one was really reading it, but it just bugs me so much that it's unfinished with only two chapters to go. It seems cursed--I started writing about T'Challa right when Chadwick Boseman died, then there was a bunch of life crap that happened to me, then there was the insurrection, then I got fucking cancer...I don't know. Oh, now the latest is that Evernote shut down, and I cannot get into the app anymore at all and I had a bunch of notes for the final chapters there, and fuck them. So I hope I can do okay without all the shit I wrote before.

This is certainly long enough! I am really, truly going to try to be better about keeping track of things here. I say that all the time, but I do want to remember when and how things happen, and my memory is for shit these days.

It's been a busy week for me despite how this week between Christmas and New Year's is supposed to be a liminal week. But I did want to say that I got two gifts this year, I think one was the original gift but something was up with it, and I ended up being second to last on the 11th hour pinch hit list, and so that's how I got two gifts! Whatever might have been wrong was fixed apparently, so yay for two cakes.

Both were about Barbara Howard, my fave from Abbott Elementary, which if you haven't seen it, is just the funniest, sweetest, most delightful comedy on TV these days. And Barbara is just majestic (she's played by Sheryl Lee Ralph, who won an Emmy in first season for the role). I'm amazed that the pinch hitter was able to write such an amazing story in such a short time, it gave me exactly what I hoped for.

My first gift:
Off the Clock (1249 words) by Anonymous
Chapters: 1/1
Fandom: Abbott Elementary (TV)
Rating: General Audiences
Warnings: No Archive Warnings Apply
Relationships: Barbara Howard & Melissa Schemmenti
Summary:

“We’ve got olives,” Melissa cackles, flopping onto the pristine couch and jostling Barbara’s elegant sitting posture companionably. “We’ve got cheese. We’ve got salami.”

“And we have wine,” Barbara says with great relish, clinking their glasses.

--
Barbara and Melissa enjoy an uneventful evening in Barbara's home.

My second gift:
non-regional diction (1373 words) by Anonymous
Chapters: 1/1
Fandom: Abbott Elementary (TV)
Rating: Not Rated
Warnings: No Archive Warnings Apply
Relationships: Barbara Howard & Melissa Schemmenti
Characters: Barbara Howard, Melissa Schemmenti
Additional Tags: Cruise Ships, Vacation, Spa Mode, besties, Family, Drinking
Summary:

Barbara and Melissa and vacation days in Spa Mode.

Go read them! Say nice things!

Ha ha, I was lamenting how hard it was to accept that this year I just didn't have the wherewithal to do a fic for my birthday, which is my annual tradition, but then minim_calibre, damn her to hell, had to go and give me a prompt about Marcus and cakes from The Bear, and then I was dreaming about cake and wrote a set of interconnected drabbles as a five things plus one. It's all her fault!

Five Cakes Marcus Thought Were Bombs and One He Knew Was Fire (600 words) by gwyneth rhys
Chapters: 1/1
Fandom: The Bear (TV 2022)
Rating: Teen And Up Audiences
Warnings: No Archive Warnings Apply
Characters: Marcus (The Bear TV 2022), Sydney Adamu, Carmen "Carmy" Berzatto
Additional Tags: 5 Things, Drabble, Five Drabbles Plus One, Baked Goods, Restaurants, Food
Summary:

Six drabbles about Marcus's search for a perfect new cake to bake.