Entry tags:
Let me explain. No, there is too much. Let me sum up.
Oh man, it's been over two months since I posted (except for my Into a Bar story) and I don't even know where to start, especially on the stuff that's happening with The Cancer. A lot has happened since the Drama Butter, but in a way not much is happening, either. I'm mostly just enduring, and feeling pretty hopeless and miserable, but that's never much fun to post about and it is still pretty painful to do much typing.
So, what's been happening...
- My oncologist has proven to be a dick and it is really having an impact on how I'm handling my treatment. When I first met him, I had a vague impression that there was something about him that wasn't quite vibing with me, but he mostly seemed like he could be cool. That hasn't been borne out in most respects; he seems constantly irritated with me and hostile to my reactions to things and he doesn't really seem to care about me as a person. My BFF Keith came with me a few weeks ago and he observed that we are not even in the same universe let alone on the same wavelength, and that he is mostly concerned with following his preferred treatment regimen and doing what he wants to do, rather than whether it's the best thing for me or not. Keith's a transplant recipient, so he knows from doctors. It's been dispiriting, to say the least.
- I started the chemo portion of treatment, which is kicking my ass, even though it isn't the usual kind of "chemo" that cancer patients have. I have to go in weekly for injections into my abdomen; one is a five-minute injection of a monoclonal antibody and the other is more of a traditional chemo type drug, and they hurt like fuck (it apparently needs adipose tissue which is most abundant in the abdomen). Dr. Dick won't give me an end date about this and every time I go in, of course, costs me money for parking, etc. Then monthly I have infusions of the bone drug zometa, which I have had bad reactions to every time, and Dr. Dick told me the first time that "that's not a side effect." I was like ...okay? The first injections, too, made me so chilled that I was violently shaking in bed while wearing three layers of clothing and underneath a down comforter, and it took a while to get to a point where I wasn't wrecked for the whole weekend, but then this past weekend (since I get these on Fridays) was the first time I had all three together and wow, that really kicked my ass.
Then I take a medication called Revlimid every day for 21 days, 7 off, which is an analog of thalidomide, so there's a lot of rigamarole about it because it's made by a specialty pharmacy and is one of the most controlled substances on earth (if you know what thalidomide is, you can imagine why). You have to be screened every month to ensure you're not going to get pregnant and it's like $18,000 for one bottle because America (the company was brought up in front of Congress for this! As an example of disgusting drug profiteering! And they still charge this ridiculous sum of money to insurance!). And because I take revlimid, I now have to take an antiviral drug, which makes me feel as bad as the revlimid does (I hate them both so much), and on Saturdays I take a giant fistful of dexamethasone, the corticosteroid. In between there I still take gabapentin and advil, and I just...I have immense difficulty swallowing pills, which Dr. Dick is incredibly...dickish about, like I'm doing it TO him. And apparently the fucking revlimid and antiviral are for life.
- I meet with Dr. Dick about once a month, but the other times I meet with the nurse practitioner in the group, and she's pretty nice. I asked her privately if I was the only one he clearly dislikes, or if I'm not alone, because I felt like, well, if he's this way with everyone, then I can find a way to deal. And she said I wasn't the first person to express a concern, and it seemed like she might try to feel around and see if the other doctor, who isn't taking new patients, could fit me in, but I didn't want to get my hopes up and I don't get the impression anything is happening on that front. It feels like a long way till open enrollment, but I may just be stuck there for now. All the doctors I have seen at the hospital, though, have been amazing, and if it would be possible to just move my care over there, that would be great. I will not be eligible for Medicare for over a year, but I guess I can start signing up sometime next year if the republicans don't find a way to kill it, and then I can just go wherever I want.
- I'm still in a lot of pain, and the side effects are making me pretty miserable, so I really have this pathetically small life right now. And I am still blind as hell and it's getting worse because that's a side effect of a bunch of the drugs, so I don't really get to do as much as I'd like, plus people are moving away and things just feel...very lonely. I've had a ton of editing work, which will help with the astronomical medical bills, but being busy with work isn't the same thing as being busy with social stuff, and I just feel so alone and sad all the time. I haven't been to a movie in ages and I really miss going to opening nights with![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
minim_calibre. The cannibals are having an in-person bash at the end of the month, and I'm really looking forward to that, but being on a weekend, I just have to hope that my Friday treatments won't leave me too sick to go.
- I don't know which drug is making it happen, but nothing tastes good and I'm often in a low-level nausea or having GI issues. I'm down about ten pounds, but that's not really bad considering how little I eat right now. At least, no one has expressed concern. The wonderful rehab cancer medicine doctor recommended me to the Swedish hospital PT department, which deals with lots of cancer patients, and I had an eval appointment Monday and that was nice. I see the doctor, as well, next week, and she has a few things she wants to test out because she, at least, is concerned that I'm still in so much pain.
- I finally figured a way to reach out to someone on metafilter with the same cancer that wasn't too weird or awkward, and she's been giving me some good info about support groups and things that I didn't know about. I was really heartened by the fact that she refused an autologous stem cell transplant, which is still the main standard of care with myeloma, and which I am totally NOPE about. It seems like everyone treats it as a given, and there's no way in hell I'm going to put myself through that.
- Unfortunately, I found out Blues is in kidney failure (fortunately, he's on the low end of the scale, but it's still failure) and he's been acting pretty weird and he's obviously not well. He's the main reason I'm even going through all this shit, so I'm pretty stressed out about it, but the vet and I talked Monday and we're going to do a few things, and see how it goes for him.
- I am hoping to get a new refrigerator in a few weeks. Twice my ancient fridge has died (the first time, the day I left for Escapade one year and the second time on New Year's Eve) and it's really ridiculously old, and when it started to make that familiar sound, I was like welp, time for a new one. I think it should hold out till the new one arrives, but the one I wanted wasn't in stock till mid-July. I am kind of sick of stainless steel and when I saw this "slate" colored one at the store I was like oooo I want that, but of course, the ones in stock were the super big cubic feet ones, not the smallest cubic feet ones (because America). It's hard to wait, but it's given little weakling sicko me time to slowly clean things out. There was some stuff in there that...well, it was the stuff of nightmares, and it was shocking how old some of my condiments were.
- Then at some point later I should be getting my new reclining loveseat and glider chair, both of which have higher backs to support my neck and head. I was a little disappointed to go through the whole purchase only to find out at the end the stuff wouldn't arrive for two to three months. Booo.
- I'm still a little shocked that I managed to eke out a story for Into a Bar (and hell, for Yuletide) but I would really love to find the strength to get back to finishing my Stucky WIP. It's hilarious to me, though, that I got more/nicer comments on a Cap/Schitt's Creek gen crossover than I did for a Kings Jack/David story. Although I found out that three of the nicest ones were in fact from bots, and then a fourth one was a scammer spam thing for a "publisher" so I had to delete them. Sigh.
- I can't wait for the WGA strike to be over. It's enraging that they're still nowhere with it, and I support them fully, but man, entertainment is getting thinner and thinner on the ground and if SAG/AFTRA strikes, it'll get dire. Just fucking pay people for the hours of enjoyment we get, you slimeballs.
So, what's been happening...
- My oncologist has proven to be a dick and it is really having an impact on how I'm handling my treatment. When I first met him, I had a vague impression that there was something about him that wasn't quite vibing with me, but he mostly seemed like he could be cool. That hasn't been borne out in most respects; he seems constantly irritated with me and hostile to my reactions to things and he doesn't really seem to care about me as a person. My BFF Keith came with me a few weeks ago and he observed that we are not even in the same universe let alone on the same wavelength, and that he is mostly concerned with following his preferred treatment regimen and doing what he wants to do, rather than whether it's the best thing for me or not. Keith's a transplant recipient, so he knows from doctors. It's been dispiriting, to say the least.
- I started the chemo portion of treatment, which is kicking my ass, even though it isn't the usual kind of "chemo" that cancer patients have. I have to go in weekly for injections into my abdomen; one is a five-minute injection of a monoclonal antibody and the other is more of a traditional chemo type drug, and they hurt like fuck (it apparently needs adipose tissue which is most abundant in the abdomen). Dr. Dick won't give me an end date about this and every time I go in, of course, costs me money for parking, etc. Then monthly I have infusions of the bone drug zometa, which I have had bad reactions to every time, and Dr. Dick told me the first time that "that's not a side effect." I was like ...okay? The first injections, too, made me so chilled that I was violently shaking in bed while wearing three layers of clothing and underneath a down comforter, and it took a while to get to a point where I wasn't wrecked for the whole weekend, but then this past weekend (since I get these on Fridays) was the first time I had all three together and wow, that really kicked my ass.
Then I take a medication called Revlimid every day for 21 days, 7 off, which is an analog of thalidomide, so there's a lot of rigamarole about it because it's made by a specialty pharmacy and is one of the most controlled substances on earth (if you know what thalidomide is, you can imagine why). You have to be screened every month to ensure you're not going to get pregnant and it's like $18,000 for one bottle because America (the company was brought up in front of Congress for this! As an example of disgusting drug profiteering! And they still charge this ridiculous sum of money to insurance!). And because I take revlimid, I now have to take an antiviral drug, which makes me feel as bad as the revlimid does (I hate them both so much), and on Saturdays I take a giant fistful of dexamethasone, the corticosteroid. In between there I still take gabapentin and advil, and I just...I have immense difficulty swallowing pills, which Dr. Dick is incredibly...dickish about, like I'm doing it TO him. And apparently the fucking revlimid and antiviral are for life.
- I meet with Dr. Dick about once a month, but the other times I meet with the nurse practitioner in the group, and she's pretty nice. I asked her privately if I was the only one he clearly dislikes, or if I'm not alone, because I felt like, well, if he's this way with everyone, then I can find a way to deal. And she said I wasn't the first person to express a concern, and it seemed like she might try to feel around and see if the other doctor, who isn't taking new patients, could fit me in, but I didn't want to get my hopes up and I don't get the impression anything is happening on that front. It feels like a long way till open enrollment, but I may just be stuck there for now. All the doctors I have seen at the hospital, though, have been amazing, and if it would be possible to just move my care over there, that would be great. I will not be eligible for Medicare for over a year, but I guess I can start signing up sometime next year if the republicans don't find a way to kill it, and then I can just go wherever I want.
- I'm still in a lot of pain, and the side effects are making me pretty miserable, so I really have this pathetically small life right now. And I am still blind as hell and it's getting worse because that's a side effect of a bunch of the drugs, so I don't really get to do as much as I'd like, plus people are moving away and things just feel...very lonely. I've had a ton of editing work, which will help with the astronomical medical bills, but being busy with work isn't the same thing as being busy with social stuff, and I just feel so alone and sad all the time. I haven't been to a movie in ages and I really miss going to opening nights with
minim_calibre. The cannibals are having an in-person bash at the end of the month, and I'm really looking forward to that, but being on a weekend, I just have to hope that my Friday treatments won't leave me too sick to go.- I don't know which drug is making it happen, but nothing tastes good and I'm often in a low-level nausea or having GI issues. I'm down about ten pounds, but that's not really bad considering how little I eat right now. At least, no one has expressed concern. The wonderful rehab cancer medicine doctor recommended me to the Swedish hospital PT department, which deals with lots of cancer patients, and I had an eval appointment Monday and that was nice. I see the doctor, as well, next week, and she has a few things she wants to test out because she, at least, is concerned that I'm still in so much pain.
- I finally figured a way to reach out to someone on metafilter with the same cancer that wasn't too weird or awkward, and she's been giving me some good info about support groups and things that I didn't know about. I was really heartened by the fact that she refused an autologous stem cell transplant, which is still the main standard of care with myeloma, and which I am totally NOPE about. It seems like everyone treats it as a given, and there's no way in hell I'm going to put myself through that.
- Unfortunately, I found out Blues is in kidney failure (fortunately, he's on the low end of the scale, but it's still failure) and he's been acting pretty weird and he's obviously not well. He's the main reason I'm even going through all this shit, so I'm pretty stressed out about it, but the vet and I talked Monday and we're going to do a few things, and see how it goes for him.
- I am hoping to get a new refrigerator in a few weeks. Twice my ancient fridge has died (the first time, the day I left for Escapade one year and the second time on New Year's Eve) and it's really ridiculously old, and when it started to make that familiar sound, I was like welp, time for a new one. I think it should hold out till the new one arrives, but the one I wanted wasn't in stock till mid-July. I am kind of sick of stainless steel and when I saw this "slate" colored one at the store I was like oooo I want that, but of course, the ones in stock were the super big cubic feet ones, not the smallest cubic feet ones (because America). It's hard to wait, but it's given little weakling sicko me time to slowly clean things out. There was some stuff in there that...well, it was the stuff of nightmares, and it was shocking how old some of my condiments were.
- Then at some point later I should be getting my new reclining loveseat and glider chair, both of which have higher backs to support my neck and head. I was a little disappointed to go through the whole purchase only to find out at the end the stuff wouldn't arrive for two to three months. Booo.
- I'm still a little shocked that I managed to eke out a story for Into a Bar (and hell, for Yuletide) but I would really love to find the strength to get back to finishing my Stucky WIP. It's hilarious to me, though, that I got more/nicer comments on a Cap/Schitt's Creek gen crossover than I did for a Kings Jack/David story. Although I found out that three of the nicest ones were in fact from bots, and then a fourth one was a scammer spam thing for a "publisher" so I had to delete them. Sigh.
- I can't wait for the WGA strike to be over. It's enraging that they're still nowhere with it, and I support them fully, but man, entertainment is getting thinner and thinner on the ground and if SAG/AFTRA strikes, it'll get dire. Just fucking pay people for the hours of enjoyment we get, you slimeballs.