Gimme that old time alien sex tech
Mar. 20th, 2023 02:43 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
gwynIt has been a few weeks since I updated and wow, lemme tell you, it has been a wild rollercoaster of a ride. I almost don't even know where to start, so much has happened. So apologies for the long post, but it's been pretty eventful.
Starting off with some amusement, I suddenly got two comments on my Kings story from Yuletide, which was so weird and unexpected because hardly anyone read it and even fewer left a comment and so to get two comments within a couple hours on a story that has been largely ignored was such a funny surprise. I couldn't even get my Kings-fan friends to read it! But it was nice because it was like they knew I needed something--they both arrived the night after I had the bone marrow biopsy and I was in a lot of pain and feeling kind of miserable. Fandom!
Also fandom! I had my appointment with the radiation oncologist last week (more about that later including the weirdest and most interesting alien sex tech stuff) and was whining atkillabeez and a couple other people about having to drive every damn day up to First Hill, where for some goddamn reason Seattle decided to locate most of its hospital and medical offices within a three-mile radius. It's not called Pill Hill for nothing. They're also tearing up and rebuilding Madison, the street you take to get to most of these places, and to say it's a confusing nightmare is putting it mildly. It's been going on for years and will likely be going on for more years, so having to go up there is no bueno and I often won't be feeling great.
Sokillabeez organized a GoFundMe to collect some money so I could take Lyft when I wasn't feeling up to dealing with it, and to say I was overwhelmed is putting it mildly--I burst into tears when she told me. I have an extremely hard time asking for help and an even harder time accepting it, and I'm just so moved that so many of you were willing to help me out, even though I know times are really tough for everyone, especially with runaway global inflation and corporate greed. YOU GUYS ARE SO KIND AND GENEROUS. I'm really grateful, because I will also be going up there for infusions while I'm doing radiation as well, and I can definitely imagine there will be days with that where I'm just not capable of making that commute--it's really technically only 9 miles, but it's hella awful freeways + Madison Street Nightmare, and knowing I have an option is just incredibly wonderful. Thank you all SO MUCH. Just so much.
So last time I updated, I still didn't have a definitive diagnosis, and they wanted a bone marrow biopsy as a way to confirm that it was indeed multiple myeloma and not another related illness. They were going to do two--one on my neck and one on my hip, and so I had to go way the hell over to one of the two very distant hospitals that were equipped for the procedure. I got my ex to take me because they had to sedate me for the neck one and I really wanted to be sedated for the hip one. It was basically like going to surgery, they did all the things I did for my colon surgery except making me do the complicated shower thing. Everyone was super nice, but I found out to my surprise that they weren't doing the neck one because I guess it was deemed too risky because of the big holes in my neck (I didn't find this out till later though). So I didn't have to drive all the way to Issaquah. Grr.
As expected, I bled like a stuck pig, and so they had to construct this elaborate pressure bandage for the back lower hip, which meant they put coagulent on guaze and then got this insane rubberized stretchy tape that was about five inches by a couple feet and it was like being physically assaulted by tape. They had to stretch it in an X pattern across my lower back, hip to hip, and pull it all as tight as possible before they could let me go home. It was crazy. I could hear them keep calling Ex to update him on when he could pick me up. But they gave me saltines and water and kept asking me if I wanted anything else since I couldn't eat before the procedure, though I just stuck with crackers. It was very hard to sleep that night despite how tired I was, because the gauze was like having a rock stuck on my back and I was very sore, and the bandage kept pulling.
The next day when I was supposed to take the bandage off, oh my god--think of having to rip off a Band-Aid/plaster from super sensitive skin only on an industrial scale. It hurt so goddamn much, and I was already sore back there. Once I finally got it off, I had to shower and I was just hoping I wouldn't repeat what happened in 2020 when I took the bandages off my face and passed out in the bathroom and severely injured myself.
It took a few days for the results, but I didn't want to look at them because I wanted to see if anyone was going to fucking call me this time--it was like Schrödinger's terminal illness was getting the lid raised bit by bit, but I just didn't want the box to be finally fully opened without some kind of goddamn explanations. It took many days, but I finally got the call from the office that I was going to come in and see the oncologist this week. But that was like five-six days without having answers, so I peeked at the test info and it definitely looked like it was myeloma.
And the radiation people had called again by then and set up an appointment for last Wednesday. I have to say, Dr. Mehta, the radiation oncologist, was just the most soothing presence. I wished he could be my regular oncologist. The nurse was also incredibly nice--I mean, they're used to dealing with emotionally wrecked people, but I know from experience that doesn't always translate to being nice. The nurse seemed to be really touched by my story (losing my only blood relative, a twin, and not having anyone to support me here in the house, and that I wasn't getting things explained to me), and she was worried enough about me that she gave me her cell phone number. She'd lost her husband to cancer and had a really terrible experience with the place she'd worked at previously, and I think it brought out a lot of those memories and she wanted me to have someone at my back.
ANYway, they wanted me to come back in the next day to make the mold for the thing that will keep my head still during radiation treatment, which thank god, because I was so worried about that--there is no way I could stay still for that. And I am so excited to show you this--so like I went in and they showed me what they'd be doing and I said, "Oh is that 3D printing" and they were like No, it's that and they held up this sort of flat head- and neck-shaped piece of plastic with bolts on the sides. They put it back in the hot water bath and had me lie on the table, and then they put it on my head and behold:
It's just wild--it goes on warm, and you can breathe with it, but they really want you to keep your shoulders lowered so it won't dry too tight, which is hard for me to do. But then it hardens, and they take it off and then put it on again with the bolts, and the weirdest thing is honestly when it bolts to the table. They put these dots on it to align everything, and then you're done. I immediately had to textminim_calibre and she responded "It looks like alien sex tech" and I was like YES! I guess that people can ask to keep them once they're done with radiation--my program will last for up to 25 treatments, a couple months of every day getting bolted into that, so hell yeah I'm keeping it. It could be so fun for Halloween, or I could make a garden piece out of it and wind some trailing plants or something through it.
If you want to see the process, including the alignment marks and the machine, this video is pretty much exactly like my experience, down to the niceness of the people doing it:
Anyhow they also gave me a tattoo--they asked me if I had tattoos and I said nope, I have freakishly sensitive skin and also I am not a fan of pain. But it's basically just a tiny needle and they dump a bunch of ink on it, and since I bleed so much, I couldn't tell what was blood and what was ink! (I also went to get a haircut afterward so I could get rid of some of the hair at the back that's likely to burn off, and my hairstylist laughed about me calling that a tattoo--but that's what they called it!)
Everything went fine, and they gave me a parking pass so I don't have to deal with the building's abysmal garage (this one person saw me trying to figure out how to get in to find my car and rescued me and I commented on the lack of signage and she said everyone loathes the garage), and I was fine till that night when this sort of intermittent pain I'd had since the biopsy flared into these horrendous, agonizing muscle spasms. It was so bad that night that I actually sent an email to my longtime BFF Keith because I realized I could die in my bed and no one would know things like the back door code or my computer passwords and such. So that's my next task, is getting him on my bank account, updating the codicils to my will, and writing out instructions for what happens if I croak suddenly.
So I had to get squeezed in urgently to the oncologist, because they were like "if you can't breathe, we really need to see you" but the doc knew right away what was happening (he thought it might be related to the biopsy and the pressure from the neck support part of the radiation table) and I guess this is common for people with MS and spinal problems, enough that they have a specific muscle relaxant for them. It's made me nauseated and hasn't been super effective, but they are slowly getting better. I never knew muscles could hurt like that, I was screaming and gasping for breath and just...ugh, it's been awful. Plus it interfered with getting more Girl Scout Cookies--i felt like if this is how my 2023 is going to be, I wanted to have ample Thin Mints, but now I don't and I'm very peeved about that.
It pre-empted my appointment that was originally for tomorrow, but we talked about all the tests, and Dr Mehta had shown me a composite of what my neck looked like to show me where they were targeting the radiation, and holy fuck, they keep calling the hole in my C6 vertebra small but it is huge to my eyes. There's a big chunk of the back right side of it missing!
He's going to have me go in for weekly infusions of some bone drugs while I'm in radiation treatment to try to build it back up, and then once they achieve remission on the cancer cells in the bone marrow, I will go on "chemotherapy," which I guess is more like maintenance drugs rather than what I'm used to with the other folks I've known who had chemo. I'm a little worried about the radiation side effects on my throat and neck, but everyone keeps saying I'm young and healthy --HAH!!!-- so they expect me to do well. I told the oncologist that I have no interest in prolonging my life at the expense of suffering, and fortunately he said he believes in quality of life over quantity, so we're on the same page re: that. Average life expectancy with this is five years, but more and more people are living much, much longer with it just being a maintenance type thing.
People keep telling me I'm being very practical and handling this so much more calmly than they would, but honestly, once I got over the initial shock with that inhumane way of telling me this, I've just been in full research mode because no one tells me anything, and it just...is what it is. I'm not happy about it, and it sucks beyond reason and I thought having colon cancer and skin cancer repeatedly was enough for one lifetime, but I guess I'm just a cancer magnet and it's gonna be what it's gonna be.
The thing that really makes me cry is when people are kind to me, that's when I lose it, and so the thing that's made me weepy is the gofundme and people offering to drive me places and even the ACA Navigator ladies telling me to send them any insurance stuff I don't understand or know what to do with and they'll help me. I was raised in the no-touching no-crying family, where I'd get berated or sometimes whacked if I didn't do things myself and bootstraps yadda yadda, so people caring is very emotional for me.
Sorry for the long post--sometimes I feel like this is where I can write it all down, so I don't forget everything. I'm already forgetting stuff that's happened in the past few weeks--it's overwhelming, to be honest, and it was exactly only one month from my first visit with the doc to the one last week about the muscle spasms. It's nuts how fast this is all happening.
Starting off with some amusement, I suddenly got two comments on my Kings story from Yuletide, which was so weird and unexpected because hardly anyone read it and even fewer left a comment and so to get two comments within a couple hours on a story that has been largely ignored was such a funny surprise. I couldn't even get my Kings-fan friends to read it! But it was nice because it was like they knew I needed something--they both arrived the night after I had the bone marrow biopsy and I was in a lot of pain and feeling kind of miserable. Fandom!
Also fandom! I had my appointment with the radiation oncologist last week (more about that later including the weirdest and most interesting alien sex tech stuff) and was whining at
killabeez and a couple other people about having to drive every damn day up to First Hill, where for some goddamn reason Seattle decided to locate most of its hospital and medical offices within a three-mile radius. It's not called Pill Hill for nothing. They're also tearing up and rebuilding Madison, the street you take to get to most of these places, and to say it's a confusing nightmare is putting it mildly. It's been going on for years and will likely be going on for more years, so having to go up there is no bueno and I often won't be feeling great. So
killabeez organized a GoFundMe to collect some money so I could take Lyft when I wasn't feeling up to dealing with it, and to say I was overwhelmed is putting it mildly--I burst into tears when she told me. I have an extremely hard time asking for help and an even harder time accepting it, and I'm just so moved that so many of you were willing to help me out, even though I know times are really tough for everyone, especially with runaway global inflation and corporate greed. YOU GUYS ARE SO KIND AND GENEROUS. I'm really grateful, because I will also be going up there for infusions while I'm doing radiation as well, and I can definitely imagine there will be days with that where I'm just not capable of making that commute--it's really technically only 9 miles, but it's hella awful freeways + Madison Street Nightmare, and knowing I have an option is just incredibly wonderful. Thank you all SO MUCH. Just so much.So last time I updated, I still didn't have a definitive diagnosis, and they wanted a bone marrow biopsy as a way to confirm that it was indeed multiple myeloma and not another related illness. They were going to do two--one on my neck and one on my hip, and so I had to go way the hell over to one of the two very distant hospitals that were equipped for the procedure. I got my ex to take me because they had to sedate me for the neck one and I really wanted to be sedated for the hip one. It was basically like going to surgery, they did all the things I did for my colon surgery except making me do the complicated shower thing. Everyone was super nice, but I found out to my surprise that they weren't doing the neck one because I guess it was deemed too risky because of the big holes in my neck (I didn't find this out till later though). So I didn't have to drive all the way to Issaquah. Grr.
As expected, I bled like a stuck pig, and so they had to construct this elaborate pressure bandage for the back lower hip, which meant they put coagulent on guaze and then got this insane rubberized stretchy tape that was about five inches by a couple feet and it was like being physically assaulted by tape. They had to stretch it in an X pattern across my lower back, hip to hip, and pull it all as tight as possible before they could let me go home. It was crazy. I could hear them keep calling Ex to update him on when he could pick me up. But they gave me saltines and water and kept asking me if I wanted anything else since I couldn't eat before the procedure, though I just stuck with crackers. It was very hard to sleep that night despite how tired I was, because the gauze was like having a rock stuck on my back and I was very sore, and the bandage kept pulling.
The next day when I was supposed to take the bandage off, oh my god--think of having to rip off a Band-Aid/plaster from super sensitive skin only on an industrial scale. It hurt so goddamn much, and I was already sore back there. Once I finally got it off, I had to shower and I was just hoping I wouldn't repeat what happened in 2020 when I took the bandages off my face and passed out in the bathroom and severely injured myself.
It took a few days for the results, but I didn't want to look at them because I wanted to see if anyone was going to fucking call me this time--it was like Schrödinger's terminal illness was getting the lid raised bit by bit, but I just didn't want the box to be finally fully opened without some kind of goddamn explanations. It took many days, but I finally got the call from the office that I was going to come in and see the oncologist this week. But that was like five-six days without having answers, so I peeked at the test info and it definitely looked like it was myeloma.
And the radiation people had called again by then and set up an appointment for last Wednesday. I have to say, Dr. Mehta, the radiation oncologist, was just the most soothing presence. I wished he could be my regular oncologist. The nurse was also incredibly nice--I mean, they're used to dealing with emotionally wrecked people, but I know from experience that doesn't always translate to being nice. The nurse seemed to be really touched by my story (losing my only blood relative, a twin, and not having anyone to support me here in the house, and that I wasn't getting things explained to me), and she was worried enough about me that she gave me her cell phone number. She'd lost her husband to cancer and had a really terrible experience with the place she'd worked at previously, and I think it brought out a lot of those memories and she wanted me to have someone at my back.
ANYway, they wanted me to come back in the next day to make the mold for the thing that will keep my head still during radiation treatment, which thank god, because I was so worried about that--there is no way I could stay still for that. And I am so excited to show you this--so like I went in and they showed me what they'd be doing and I said, "Oh is that 3D printing" and they were like No, it's that and they held up this sort of flat head- and neck-shaped piece of plastic with bolts on the sides. They put it back in the hot water bath and had me lie on the table, and then they put it on my head and behold:
It's just wild--it goes on warm, and you can breathe with it, but they really want you to keep your shoulders lowered so it won't dry too tight, which is hard for me to do. But then it hardens, and they take it off and then put it on again with the bolts, and the weirdest thing is honestly when it bolts to the table. They put these dots on it to align everything, and then you're done. I immediately had to text
minim_calibre and she responded "It looks like alien sex tech" and I was like YES! I guess that people can ask to keep them once they're done with radiation--my program will last for up to 25 treatments, a couple months of every day getting bolted into that, so hell yeah I'm keeping it. It could be so fun for Halloween, or I could make a garden piece out of it and wind some trailing plants or something through it.If you want to see the process, including the alignment marks and the machine, this video is pretty much exactly like my experience, down to the niceness of the people doing it:
Anyhow they also gave me a tattoo--they asked me if I had tattoos and I said nope, I have freakishly sensitive skin and also I am not a fan of pain. But it's basically just a tiny needle and they dump a bunch of ink on it, and since I bleed so much, I couldn't tell what was blood and what was ink! (I also went to get a haircut afterward so I could get rid of some of the hair at the back that's likely to burn off, and my hairstylist laughed about me calling that a tattoo--but that's what they called it!)
Everything went fine, and they gave me a parking pass so I don't have to deal with the building's abysmal garage (this one person saw me trying to figure out how to get in to find my car and rescued me and I commented on the lack of signage and she said everyone loathes the garage), and I was fine till that night when this sort of intermittent pain I'd had since the biopsy flared into these horrendous, agonizing muscle spasms. It was so bad that night that I actually sent an email to my longtime BFF Keith because I realized I could die in my bed and no one would know things like the back door code or my computer passwords and such. So that's my next task, is getting him on my bank account, updating the codicils to my will, and writing out instructions for what happens if I croak suddenly.
So I had to get squeezed in urgently to the oncologist, because they were like "if you can't breathe, we really need to see you" but the doc knew right away what was happening (he thought it might be related to the biopsy and the pressure from the neck support part of the radiation table) and I guess this is common for people with MS and spinal problems, enough that they have a specific muscle relaxant for them. It's made me nauseated and hasn't been super effective, but they are slowly getting better. I never knew muscles could hurt like that, I was screaming and gasping for breath and just...ugh, it's been awful. Plus it interfered with getting more Girl Scout Cookies--i felt like if this is how my 2023 is going to be, I wanted to have ample Thin Mints, but now I don't and I'm very peeved about that.
It pre-empted my appointment that was originally for tomorrow, but we talked about all the tests, and Dr Mehta had shown me a composite of what my neck looked like to show me where they were targeting the radiation, and holy fuck, they keep calling the hole in my C6 vertebra small but it is huge to my eyes. There's a big chunk of the back right side of it missing!
He's going to have me go in for weekly infusions of some bone drugs while I'm in radiation treatment to try to build it back up, and then once they achieve remission on the cancer cells in the bone marrow, I will go on "chemotherapy," which I guess is more like maintenance drugs rather than what I'm used to with the other folks I've known who had chemo. I'm a little worried about the radiation side effects on my throat and neck, but everyone keeps saying I'm young and healthy --HAH!!!-- so they expect me to do well. I told the oncologist that I have no interest in prolonging my life at the expense of suffering, and fortunately he said he believes in quality of life over quantity, so we're on the same page re: that. Average life expectancy with this is five years, but more and more people are living much, much longer with it just being a maintenance type thing.
People keep telling me I'm being very practical and handling this so much more calmly than they would, but honestly, once I got over the initial shock with that inhumane way of telling me this, I've just been in full research mode because no one tells me anything, and it just...is what it is. I'm not happy about it, and it sucks beyond reason and I thought having colon cancer and skin cancer repeatedly was enough for one lifetime, but I guess I'm just a cancer magnet and it's gonna be what it's gonna be.
The thing that really makes me cry is when people are kind to me, that's when I lose it, and so the thing that's made me weepy is the gofundme and people offering to drive me places and even the ACA Navigator ladies telling me to send them any insurance stuff I don't understand or know what to do with and they'll help me. I was raised in the no-touching no-crying family, where I'd get berated or sometimes whacked if I didn't do things myself and bootstraps yadda yadda, so people caring is very emotional for me.
Sorry for the long post--sometimes I feel like this is where I can write it all down, so I don't forget everything. I'm already forgetting stuff that's happened in the past few weeks--it's overwhelming, to be honest, and it was exactly only one month from my first visit with the doc to the one last week about the muscle spasms. It's nuts how fast this is all happening.
no subject
Date: 2023-03-21 12:03 am (UTC)It's ridiculous that you have to do your own research on this, but it seems to be that way with almost any kind of cancer, any more. I don't know if it's a product of them knowing more or recognizing it sooner or the treatments are just getting so much more specific for different kinds of cancer -- but I think it's just gotten more confusing for those who have to deal with it.
And I'm really happy that you and your treatment ocnologist are on the same page about quality of life as far as options go. I share your feelings about that.
I do wish I were closer so I could be a more tangible help, but I'm not, so I will continue to send good vibes and healing love your way and light a candle for the treatment to be as side-effect free as is possible for you.
{{Hugs}}
no subject
Date: 2023-03-26 05:05 am (UTC)no subject
Date: 2023-03-21 12:10 am (UTC)Fingers crossed that the treatment works well, and that it improves your pain and functioning, and keeps the cancer in check for much longer than the average.
no subject
Date: 2023-03-26 05:08 am (UTC)no subject
Date: 2023-03-21 12:13 am (UTC)no subject
Date: 2023-03-21 12:24 am (UTC)I'm sorry you have to deal with all that but I'm glad that one doctor and nurse are good.
no subject
Date: 2023-03-21 12:55 am (UTC)no subject
Date: 2023-03-21 02:05 am (UTC)Randomly, we have a box of Thin Mints that we don't need - C can't eat them anymore, and I've no desire to eat two boxes. If you want to share your address in a DM or email, we're happy to mail them to you.
I also have a friend whose daughter does online ordering, if you'd rather buy your own.
no subject
Date: 2023-03-26 05:10 am (UTC)no subject
Date: 2023-03-26 03:44 pm (UTC)Glad you got your thin mints.
no subject
Date: 2023-03-21 02:23 am (UTC)All appendages crossed that it goes well.
no subject
Date: 2023-03-21 03:58 am (UTC)Also, I plugged in a random Seattle zip code and found a troop 76 miles from you that is still selling cookies online, including Thin Mints! The order page is here.
no subject
Date: 2023-03-26 05:13 am (UTC)no subject
Date: 2023-03-21 05:18 am (UTC)Why can't it be, like, money or something that decides you're a magnet? That's just way too much cancer for one human.
no subject
Date: 2023-03-21 05:48 am (UTC)that mesh is so interesting - I'd certainly want to keep it as well.
I didn't order any myself this year, but if you want, I can online order some Thin Mints to be shipped to you? just let me know!
no subject
Date: 2023-03-26 05:15 am (UTC)no subject
Date: 2023-03-26 06:12 am (UTC)no subject
Date: 2023-03-21 01:26 pm (UTC)no subject
Date: 2023-03-21 07:32 pm (UTC)no subject
Date: 2023-03-26 05:18 am (UTC)no subject
Date: 2023-03-21 08:18 pm (UTC)no subject
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Date: 2023-03-22 04:07 am (UTC)no subject
Date: 2023-03-26 05:20 am (UTC)no subject
Date: 2023-03-22 06:35 pm (UTC){{{hugs}}}
no subject
Date: 2023-03-26 05:20 am (UTC)no subject
Date: 2023-03-22 09:09 pm (UTC)no subject
Date: 2023-03-23 07:20 pm (UTC)I really appreciate the depth of your whole cover story, to keep us from learning that you have been Abducted By Aliens For Probing Purposes.
(...I mean. That is totally Mesh For Probing Purposes. Let's face it.)
no subject
Date: 2023-03-26 05:23 am (UTC)no subject
Date: 2023-03-25 03:29 am (UTC)no subject
Date: 2023-03-26 05:25 am (UTC)no subject
Date: 2023-03-26 04:36 pm (UTC)no subject
Date: 2023-04-02 02:55 am (UTC)I'm glad that you have some certainty now about what's up and next steps, and I remain right here, willing to help how I can. Sending much love, from one practical researcher to another. <3
no subject
Date: 2023-04-02 03:56 pm (UTC)Also, FYI, I had a dear friend with cancer who was able to receive all kinds of rides/other support from the American Cancer Society (and Gilda's Club, I think, but I may be misremembering that bit?). It was amazing how they were able to help. I drove her to treatment and they tried to pay me, even. If your oncologist has a social worker, that person may be able to help you access some of this. She was surprised at what was available, and it made a terrible time a little easier.