Ch-ch-ch-ch-changes
Aug. 15th, 2023 05:51 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
gwynIt is hot as balls here in the PNW, and with the way so many of the drugs I'm taking dysregulate my temperature, it's even more fun than the usual PNW heat waves. I'm lucky in that I have a window A/C unit, unlike so many people here, but the only place I could put it was in the kitchen, which means that most of the rest of the house doesn't cool down much. I've tried using a box fan to blow the cooler air out to the rest of the house but...it's not super successful. It's especially bad on weekends, because I not only have treatment, which makes me feel crappy, on Fridays usually, but I also take a big-ass dose of steroids on Saturday so I sweat like a pig regardless of weather.
Anyways, lots of stuff going on lately, it seems. I was beyond thrilled that I managed to feel good enough to make it to Barbie withminim_calibre and her fam, the first movie I'd been to since the pain in my neck/shoulders started way last fall. I can totally understand the complaints or issues that people have with it, and yet I do not care at all and I absolutely loved it.
I wasn't sure it would work out, but I have been switched to the other hematology oncologist at the practice and saw him for the first time last week, even though normally he doesn't work on Fridays--but Lindsey, the nurse practitioner I usually see, was out sick so he came in and I got to meet him a week early. He's just such a world of difference--he ran really late with me because he seemed to want to tell me everything, and while that included a lot of stuff I already knew, there was definitely some stuff I didn't and it was helpful. He's super enthusiastic and willing to talk about the future, which is something I wasn't able to get out of the previous doctor. So at least I feel like the rest of the year, even if I choose a different network at open enrollment, won't be sheer torture with an asshole oncologist who tries to gaslight me at appointments.
I also got the results of the myeloma bloodwork, which were overdue, and it does look like the chemo is working. I just wanted to know--because I really hate the suffering, and if things weren't really changing or weren't looking like they'd make a difference without a lot more suffering, then I wanted to stop. But since it does appear to be working, I guess I'll keep going and see where it takes me.
I've been going to physical therapy at the Swedish rehabilitative medicine department, and it's been helpful, although I still have days where things are so bad that nothing helps--none of the exercises change anything, I'll just have so much pain and lightheadedness that I can't really stand up or walk anywhere no matter what I do. Dr. Li did explain that he's had some patients who took years for the pain to go away, so he doesn't want me to give up hope, but it can be a slow path for some people.
One of the first things I was told was that "chemo" for myeloma isn't like the chemo I saw with my loved ones who suffered so much, and that I wouldn't barf my guts up or lose my hair. Welp. I'm not sure if it was a cumulative effect of the injections I've been getting each week or what, but I started getting sick on weekends, especially by Saturday night. The first month or so, I had no real problems, but of course by the time I went to a get-together for the first time in months with the local gang, I couldn't eat much of anything and by the time I got home, I was throwing up. Fortunately, Lindsey really listens to me and she worked out an anti-nausea plan with me and it helps for sure, although it'd be easier if the pharmacy would give me more than nine tablets at a time. It's so weird.
But then...my hair started coming out. I'm honestly surprised at how upset I am about this. Every time I wash my hair, I end up with fistfuls of it coming out, and there's just hair everywhere, on everything, because I'm shedding huge quantities of it. Lindsey wanted to check my thyroid levels and we were going to talk about it last week, but she called in sick, so I hope I get a chance to talk to her about it soon. She seems confident I won't end up bald, but if I didn't have such insanely thick hair, I think I would already have some empty patches. It's pretty depressing because it's likely caused by the drug I'll have to take forever, the thalidomide analog. Since it isn't a thyroid problem, I don't know what is able to be done about it.
Also, my cataracts have gotten so bad that at this point it's affecting work and, well, everything, and I guess it's because the steroids make cataracts way worse. I finally got a callback from the place my eye doctor really wants me to go even though they're crazy far away, and it looks like they're scheduling into October, so there won't be any resolution to the problem for a while yet. At least people I know will be home so I will have some way to get transportation--it seemed as though literally everyone I know is leaving in September for a trip or for moving away, and I was thinking it was going to be difficult, but a few people will be back by the time I can get the first eye scheduled, so that helps. It's so stupidly complicated--I have to schedule it around the week off of the one medication, and then I'll have to also figure out the schedule for the injections...bleh.
Has anyone else watched The Bear? I am just bananas about it and yet I've only been able to prod a few people to watch it. I thought at first I would hate it, because it was so much stuff I can't stand in the first couple episodes, but then somewhere along the line I just started to really get into it, and when season 2 dropped recently, I actually binged it in one day, something I never do because I hate binge-watching. Especially episodes 4 and 7, I was just so moved by them and their quiet, emotional beats and character studies...it's just the best show. I want Carmy to have nice things.
Anyways, lots of stuff going on lately, it seems. I was beyond thrilled that I managed to feel good enough to make it to Barbie with
minim_calibre and her fam, the first movie I'd been to since the pain in my neck/shoulders started way last fall. I can totally understand the complaints or issues that people have with it, and yet I do not care at all and I absolutely loved it.I wasn't sure it would work out, but I have been switched to the other hematology oncologist at the practice and saw him for the first time last week, even though normally he doesn't work on Fridays--but Lindsey, the nurse practitioner I usually see, was out sick so he came in and I got to meet him a week early. He's just such a world of difference--he ran really late with me because he seemed to want to tell me everything, and while that included a lot of stuff I already knew, there was definitely some stuff I didn't and it was helpful. He's super enthusiastic and willing to talk about the future, which is something I wasn't able to get out of the previous doctor. So at least I feel like the rest of the year, even if I choose a different network at open enrollment, won't be sheer torture with an asshole oncologist who tries to gaslight me at appointments.
I also got the results of the myeloma bloodwork, which were overdue, and it does look like the chemo is working. I just wanted to know--because I really hate the suffering, and if things weren't really changing or weren't looking like they'd make a difference without a lot more suffering, then I wanted to stop. But since it does appear to be working, I guess I'll keep going and see where it takes me.
I've been going to physical therapy at the Swedish rehabilitative medicine department, and it's been helpful, although I still have days where things are so bad that nothing helps--none of the exercises change anything, I'll just have so much pain and lightheadedness that I can't really stand up or walk anywhere no matter what I do. Dr. Li did explain that he's had some patients who took years for the pain to go away, so he doesn't want me to give up hope, but it can be a slow path for some people.
One of the first things I was told was that "chemo" for myeloma isn't like the chemo I saw with my loved ones who suffered so much, and that I wouldn't barf my guts up or lose my hair. Welp. I'm not sure if it was a cumulative effect of the injections I've been getting each week or what, but I started getting sick on weekends, especially by Saturday night. The first month or so, I had no real problems, but of course by the time I went to a get-together for the first time in months with the local gang, I couldn't eat much of anything and by the time I got home, I was throwing up. Fortunately, Lindsey really listens to me and she worked out an anti-nausea plan with me and it helps for sure, although it'd be easier if the pharmacy would give me more than nine tablets at a time. It's so weird.
But then...my hair started coming out. I'm honestly surprised at how upset I am about this. Every time I wash my hair, I end up with fistfuls of it coming out, and there's just hair everywhere, on everything, because I'm shedding huge quantities of it. Lindsey wanted to check my thyroid levels and we were going to talk about it last week, but she called in sick, so I hope I get a chance to talk to her about it soon. She seems confident I won't end up bald, but if I didn't have such insanely thick hair, I think I would already have some empty patches. It's pretty depressing because it's likely caused by the drug I'll have to take forever, the thalidomide analog. Since it isn't a thyroid problem, I don't know what is able to be done about it.
Also, my cataracts have gotten so bad that at this point it's affecting work and, well, everything, and I guess it's because the steroids make cataracts way worse. I finally got a callback from the place my eye doctor really wants me to go even though they're crazy far away, and it looks like they're scheduling into October, so there won't be any resolution to the problem for a while yet. At least people I know will be home so I will have some way to get transportation--it seemed as though literally everyone I know is leaving in September for a trip or for moving away, and I was thinking it was going to be difficult, but a few people will be back by the time I can get the first eye scheduled, so that helps. It's so stupidly complicated--I have to schedule it around the week off of the one medication, and then I'll have to also figure out the schedule for the injections...bleh.
Has anyone else watched The Bear? I am just bananas about it and yet I've only been able to prod a few people to watch it. I thought at first I would hate it, because it was so much stuff I can't stand in the first couple episodes, but then somewhere along the line I just started to really get into it, and when season 2 dropped recently, I actually binged it in one day, something I never do because I hate binge-watching. Especially episodes 4 and 7, I was just so moved by them and their quiet, emotional beats and character studies...it's just the best show. I want Carmy to have nice things.
