Drip, drip, drip
May. 24th, 2024 05:18 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
gwynI 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.
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 seekillabeez 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.
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.
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.
no subject
Date: 2024-05-25 01:38 am (UTC)I'm sorry about the cancer grind and it sucks that the treatments are a permanent thing in your life now. Having a sick pet on top of that is a tough extra burden, and pet health stress is the worst. I know most encouragement sounds cliche and probably produces a reflexive urge to tell people to fuck off when it comes, so I'm just gonna give some thumbs up and congratulate you on still being here - if you want that sort of thing.
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Date: 2024-05-25 02:02 am (UTC)No matter their age, cats always to seem to have a way to keep us on our toes.
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Date: 2024-05-25 02:27 am (UTC)no subject
Date: 2024-05-25 02:33 am (UTC)no subject
Date: 2024-05-25 03:20 am (UTC)no subject
Date: 2024-05-25 03:24 am (UTC)congrats on being able to see! that's really great, what a nice thing for you
I'm sorry Blues is ailing - hopefully the running away won't recur!
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Date: 2024-05-25 05:00 am (UTC)Wow, chronic illness really is a lot like maintaining sobriety, isn't it. Agh.
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Date: 2024-05-25 08:14 am (UTC)no subject
Date: 2024-05-25 11:53 am (UTC)That's a really poignant clip, I can see how that would connect with you.
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Date: 2024-05-25 03:29 pm (UTC)The change cataract surgery and makes is really amazing. I'm glad you could finally manage the logistics. The laser fix for the secondary cataracts is really as quick and painless as they say (at least itvwas for me), and no annoying aftercare like with the initial surgery so it's not disruptive at all. I had avoided it for a long time due to anxiety because doctors had told me things were painless before and then they weren't, but this was so quick, entirely fixed the problem and I could just take the metro home with my vision okay again, no need for anyone to accompany me or anything.
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Date: 2024-05-25 03:41 pm (UTC)Zometa is one of the osteoporosis drugs that the doctors have been pushing in my direction (the one they want to use has a different brand name but the generic is zolendronic acid) and the side effects sound intense.
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Date: 2024-05-25 04:57 pm (UTC)no subject
Date: 2024-05-26 12:46 am (UTC)I'm glad you're on here and i'm glad you're posting!
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Date: 2024-05-26 02:41 am (UTC)Still, getting good sight is a wonderful gift in the midst of the humdrum craziness of chronic cancer treatment.
Keep on taking care of yourself as best you can, and know that there are those of us out here who care.
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Date: 2024-05-27 03:39 pm (UTC)*hugs*
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Date: 2024-05-28 01:39 am (UTC)And I"m LOL'ing at your Ex. Yeah, that's ... telling.
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Date: 2024-05-28 01:42 am (UTC)no subject
Date: 2024-05-30 04:18 am (UTC)I'm glad to see you posting. I should do it more instead of just commenting when other people post.