Move your bloomin' arse!
Jul. 4th, 2024 04:08 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
gwynThe 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?
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?
no subject
Date: 2024-07-05 12:32 am (UTC)I hope you can find some treatment regime to keep the cancer in check that is tolerable.
And it looks the Tories are indeed having a very bad night.
no subject
Date: 2024-07-05 01:40 am (UTC)no subject
Date: 2024-07-05 02:01 am (UTC)I haven't watched The Bear, but I'd love to read your post about it!
no subject
Date: 2024-07-05 02:34 am (UTC)no subject
Date: 2024-07-05 02:40 am (UTC)no subject
Date: 2024-07-05 02:59 am (UTC)It does look like the Tories got their asses kicked.
no subject
Date: 2024-07-05 04:03 am (UTC)no subject
Date: 2024-07-05 04:03 am (UTC)I just watched all 3 seasons of "The Bear" in the past week or so, and am all in my feelings about it, so yes, please post about it!
no subject
Date: 2024-07-05 04:14 am (UTC)it's great you didn't break your ankle, though I'm sorry you had such shitty service at the ER!
also, sorry things are so hard generally; there aren't good words, but please know I'm thinking of you, and hope you can find peace with whatever course of action you end up taking ''
no subject
Date: 2024-07-05 08:14 am (UTC)I'm so sorry it is so miserable and brutal. I hate the US health care system so, so much.
no subject
Date: 2024-07-05 12:59 pm (UTC)no subject
Date: 2024-07-05 05:45 pm (UTC)That sounds brutal. I'm glad to hear an update from you, though. Been thinking of you a lot 💗
no subject
Date: 2024-07-06 01:17 am (UTC)I haven't watched any of The Bear, but my mom and sister love it, so I would gladly read a post about it.
no subject
Date: 2024-07-06 03:35 am (UTC)I hope your kitty came through that dumb holiday OK.
no subject
Date: 2024-07-07 04:50 pm (UTC)I would absolutely talk about S3 The Bear. Not done with it yet but will be shortly.
no subject
Date: 2024-07-07 07:43 pm (UTC)Also, allll the hugggggs, because uch, ugh, argh. I'm glad your ankle didn't break, and I hope you've enjoyed seeing those Tory fuckers get stomped into the grouuuuund \o/ !
no subject
Date: 2024-07-09 09:42 pm (UTC)I'm so sorry this is all happening and there don't seem to be any good options. I second the suggestion to talk to hospice people. They were so great for a couple of my family members.
no subject
Date: 2024-07-11 03:33 pm (UTC)*hugs*
I need to start watching The Bear, I've heard so many good things about it.