[This is a health plurk so choose your own CWs bc they're all in here] So I have been informed by a number of professionals that my massive trust issues will not in fact improve by just not talking to people. So this is a catchup for what's been happening this year. It's got all kinds of body horror, so buckle up for that.
so okay it looks like the last time I checked in was six months ago to talk chemo things, but I don't think I mentioned the other half of what was going down at the time
which puts us back in....August of last year I think
I had a scan that was like "there's a tumor in your lung, it's in a spot we can't really do a biopsy, but it looks cancer-y so we're going to treat it like cancer". There was also a spot on my spine that shared that same level of "UH THIS IS CONCERNING" but the priority was on the squishy inside bits
meds were changed, fusses were made, I got thrown on something that was like "this increases blood clotting and causes massive migraines and oral sores, have fun with that"
which like whatever. None of this stuff tickles, you know? And I don't like to make my pain other people's problem, so I just kind of rode it out
it came hard for my kidneys and I spent a lot of days doing this thing where it was like "I need to take a painkiller but moving hurts so I'm gonna just sit here and inhabit this pain until it leaves me alone long enough for me to do something about it"
I had a lot of mouth pain and that started this weird procession of going to different dental folks trying to figure out if it was a tooth thing or a med thing or something else going wrong in all the other mouth-y parts
and around October/November, it was just like "I taste blood all the time and this is my life now"
there was this white spot in my mouth that kept getting bigger, and I mostly assumed it was just one of the sores I'd been told to expect
and then one of the dental folks I went to was like "what no this is dead bone D:"
And then I got to learn way too much about osteonecrosis of the jaw
so basically, certain medications can cut off the supply of oxygen to parts of bones. The bones in your mouth are at the end of one of the bloodline supply chains so they're particularly susceptible to losing out on air and suffocating
and once you've had a part of your body die, it tries to goad its neighbors into decomposing with it
by the time I'm at the point where people are starting to tell me what they know and I'm piecing together wtf is happening while stringing together like 5 doctors' knowledgebases, it's mid-January
My oncologist boots the med that's ruining my life in like three different ways and gives me a talk about how we've run through all the options that are available through pills and that everything else we can do will involve IV chemotherapies for the rest of forever
so that gets morbid when I think about it and I choose not to dwell there a lot
But the mouth situation continues to have me freaking tf out
like I don't recommend googling osteonecrosis of the jaw because the image results are such a nightmare that safesearch filters them
i’m sitting in here to listen and bear witnesss so you know you’re not yelling to the void. 
it felt wrong to just read and not let you know i’m listening.
it felt wrong to just read and not let you know i’m listening.
i see YOU and i’m here
but BASICALLY like it's one of those things where the solution is "cut it out" and that's it like once it's dead it's not coming back
but when you're talking about your jawbone that's one of those things where it's like. Wait but I need that
I literally talk for a living, like
so I had a pretty hard spiral about that
and Dr. Google had me pretty scared (which was a RIDE when they started me on the next chemo, where anxiety spikes translate to heart palpitations)
So I meet with an oral surgeon in early March with expectations somewhere around "we caught it early and that means you'll just need six months or so to learn how to talk again but can still eat solid food maybe"
the surgeon did some crazy science wizardry scans and was able to determine that we DID catch it early, and that we caught it while it was still small and shallow
i am also here and listening.
i'm also here,
since they pulled me off the meds that caused it, he was like "your body can figure this out" and didn't schedule a surgery
though i was already aware of some of this at least
and just told me to keep coming back every two weeks
and at that point I'm sweating because mouth stuff is when insurance likes to be like "oh we don't cover that" and it's like "cool that's another monthly expense of several-hundred dollars that I don't have"
but his theory was that the body will treat dead matter like a foreign object and will do its best to get rid of foreign things
and that my gums would start growing back over the living bone tissue and force out the dead stuff in the process
also reading... this is so much and i really hope you had people to talk to in the midst of all of it
so that was the plan and it DID kind of happen that way
but it was also a little like... you know how we talk about baby teeth just popping out like it's nbd
but actually it's prolonged and bloody and frequently painful
I got to have THAT happening but on the side of a tooth instead
just for spicy variety
so it went from like... "eating hurts" to being like "eating doesn't hurt but TALKING is scratching up my tongue as it scrapes along this serrated bone edge and I have to remember to clean up blood from the side of my mouth after I've taught a class"
it's around then that Saro and I decided that things that are really fun to write in RP shouldn't ever happen in real life
bc if a fictional person was like "oh no these fangs are emerging from this monstrous transformation, and all he could do is writhe and spit mouthfuls of blood" like A+ chef's kiss
LESS FUN IRL
It's true. A lot of things that are fun to write seem like they suck to actually experience
but by June, the oral surgeon was like "oh you've got a complete gum layer under there! just take another month to thicken it up a little and we can probably get that out soon"
at which point I was like "this sounds fake" because I did not see a world where things were THAT dramatic and then THAT simple in six months
but then in July he just took a little toothpick-looking thing and wiggled it in my mouth a little and was like "there it's out we're done"
no surgery, no anesthesia, no learning-how-to-make-a-meal-in-a-blender
and then I had August off from dramatic health thing
I paid for it immediately on September first 
that's incredible that you didn't end up needing surgery... glad your body was on your side for once for that one
so I mentioned earlier that the chemo I'm on (same chemo I talked about a while ago, One week of Awful trades off for two weeks of Being Human) can cause heart problems. So I have to do some cardio testing every three months just to make sure my heart doesn't explode because I had a panic attack
I did one at the end of August and then got a call that was like "Hi um Dr [heart guy] would like to see you in his office today if you can make it"
which is like OH okay we're back to the dramatics vacation's over
so I show up to talk heart stuff and listen to how my body is trying to kill me THIS time
and he walks me through the imaging from the exam and points out that there's something extra flapping around one of the heart chambers near a valve
and I have less experience talking people through this part so I need to reach for a diagram
ok so basically the valve that I circled is pulled open and closed by those little stringy things
I knew what they were called for approximately 0.0001 second and did not retain the name
but sometimes when a heart is overpressured, the stringy things can break
if one breaks, nbd
if a bunch of them break, oh no panic button
so he was thinking that maybe one of them snapped off and was creating the random wiggly thing from the scans
but we agreed that generally speaking, you don't want random stuff booping around in the middle of your heart
so we agreed to go a more invasive sonogram by shoving equipment down my throat
nbd, had a hard time getting someone to agree to take me to the hospital in the middle of a friday afternoon, but it was just a quick scan that no one was really worried about
and then I woke up and they were like "so we're doing some inpatient treatment..........."
they found that it was not a broken stringy thing but a mass that was growing from my chemo port and had traveled down into my heart valve
so uh basically for a hardware visual, the port is like 
quick access from needle to heart, no fussing with tiny arm veins
but so the end of the port that ends up in the heart had ????? growing on it. Dr Heartguy classified it as endocarditis and decided to treat it as a heart infection until we could prove that it WASN'T a heart infection
oh no, that sounds so scary and i’m so angry that you had a hard time finding someone to take you for a quick scan!
oh lol my relationship with my support system is a different story. Very there for pink ribbons and things that look nice on their socials, but very upset every time I actually need a thing and ask them to show up
I heard a lot of "I guess I just wasn't meant to have a vacation this week" while I was in the hospital
it was labor day weekend and I was very rude to impose so dramatically
lol BUT ANYWAY so I decided to name my weird heart mass Rose after the fungus baby from Resident Evil 8
they took out my port and put in a picc line instead (I HATE IT SO MUCH it is the cause of so much fussing) so I can still get treatment while the port site heals
and then I was prescribed 6 weeks of IV antibiotics, which I got to learn how to self-administer
so now that's a life skill I have that I didn't want
there was a round of "oh no my kidneys are having A Problem with this" at first, but it settled down after the second week
they couldn't find anything bacterial or infection-y in any of my bloodwork, so they let me ease off the IV meds after the fourth week and decided that Rose was probably a white cell thrombus
(which is a fun word to say but is basically just a fancy blood clot)
just my body being like "wtf is this plastic thing doing here LET'S BUILD SHIT ON IT" in the form of something that could have become a heart blockage
which I think brings us to now? Current status is that there's still basically tubes coming out of a hole in my arm 
and I hate it and want that to not be my life but I need to wait for my chest incision to heal up before they can cut it open again
and then I wrote an rpg setting about a nihilist cult and eldritch tentacle horror can't imagine what I was processing over the last few weeks 
goodness this is a lot for one person to deal with in a row! I hope things settle down for you soon.
THAT'S IT THAT'S THE STUFF it feels weird to come here with all this (es...pecially after last week, lmao) but I did promise that I would try talking to people and now that I have done the thing surely that means I can go back to preserving my metaphorical soft underbelly and squint suspiciously instead
i knew some of this but holy shit, i'm glad that they managed to catch the heart blockage before it became a bigger problem
Man, I know I heard about So Much Stuff, but when it's all in one place it feels like so much more than when you're getting it a little at a time.
iluvroadrunner6: haha yeah I felt really bad when you were like "do you want to do something" and I was like "can't! it got dramatic again T_T"
look, dramatic things happen, we will do another thing another time
SaroSaron: Irony set aside, I don't know how I would have handled any of this without your support and patience. Just having someone to listen and validate me when that one person is like "ugh but why aren't you thinking about ME right now" and I need someone on the outside to help check if the gas is on
You know I'm always here to listen, even if I'm not always the best at being comforting.
It's weird and stressful and you don't need to shoulder any of it on top of the stress you're shouldering for everyone around you. And it's bound to keep getting weirder and MORE stressful
the hardest part of a lot of this is figuring out how to explain things I don't understand. And you're so good at helping me figure out how to articulate things so I can handle myself when I have the face the Formal Inquisition later on
i know i've been going through it lately but i'm always willing to listen to you too even when i'm in the thick of it
because life sucks, and sometimes we gotta support each other
the nice thing about having friends is you can help carry each others heavy stuff, it makes it all lighter. 
I mean you two got regular updates! Shikki, no one else would understand Rose the way you did
STILL CAN'T BELIEVE THEY THREW HER OUT
THE NERVE
the cheek the nerve the gall the audacity and the gu...
i wish you could've kept rose in a jar
Rose definitely would have decomposed by now
a conversation piece-- not if preserved PROPERLY
fdhjkgd
"this is my pickled thrombus. I grew her myself"
"oh yeah that's from the time i had a weird mass growing on my port, it's like my child, her name is rose and i love her"
they're just lying to you, she's split between four different castles
the rose thing is amazing but WOW what a journey...
jesus this is so much... im sorry youve had to deal with all that
demonology: I don't do things halfway okay
your body is extremely extra damn
also HAVE FUN AT NYCC and/or HOPE YOU HAD FUN I can't remember if it's this weekend or next weekend
it's this coming weekend!
I wave at you distantly from across the river bc I am not currently in a place to casually be hanging around several thousand humans breathing their various bacterias
YES UNDERSTANDABLE
waves back tho!!
take care of yourself 
I AM TRY.
also sighs at the support group stuff... i am not the sick one but i feel the frustration of ppl not showing up
yo what the fuck with your support system though how DARE they say that and i hope you feel my anger from here
(also rip rose, the majority of us did not know thee well but)
sometimes one's support system is full of narcissists who are capable of love but have really broken ways of expressing it
Cancer is supposed to be quick and dramatic and involve being beautiful and bald and pale and here I am still needing things four years later Rude of me tbh
Rude of me tbh
I even have hair! So clearly I'm overstating my needs
that makes me want to scream incoherently at them
but like! as noted! Massive trust issues.
it's really easy for me to fall into patterns of like. "well X wasn't here for me when I needed them so FUCK 'EM" when I didn't actually communicate to X that I needed them
yeah i get that tho because at least for me all it takes is one bad Thing to validate all the things my brain is telling me about why reaching out to X would be a bad idea anyway
so like 5 good Times can’t always overpower That One Time
yeah, it's hard
ugh I'm sorry you have an inconsistent support system
I mean! People have lives that do not center me and that's also fine
I WISH i was close enough to you to make up for your shitty support system somehow
this is so much i'm sorry it sucks
because you are gracious enough to surprise-package from time to time and it usually leads to a conversation
OH
if you are comfortable sharing your new address then the surprises can continue! if not i will share love here exclusively
when I'm being like "oh my god WHAT why did you do this thank you" it never seems like the right time to be like "I do not step into that building anymore and had to ask someone to carry it out to my car"
oh god, jessie thats so much at once. I want to fight your support system, im sorry they are like that, and im sorry you are going through all this <3
No fighting necessary! They are people doing their best with the facilities at their disposal
and like. I didn't have to move to chicago recently for my weird health shit so tbh this is easy street on the relative scale of things
i knew some of these things but not all of them, and i too would fight people for you but will refrain from doing so.
I'm pretty scrappy myself
I am also Disappointed they didn't at least properly document Rose for you to be super weird about "look at my thrombaby" like those are the photos in your wallet you whip out at family reunions, y'know? And still very proud of your jawbone!
oof what an update. though I feel you on the "it's hard to talk to people" when it's So Much and trust is hard. but I am glad you have gotten to the point where you can relay things and breathe a little from all of that
yes thank you for sharing this with us!!! it is so hard to take that first step and rely on others
it is so hard to take that first step and rely on others
We talked about some of this one on one but thank you for sharing and updating- what you’ve been dealing with is so, so much but my DMs are always open for health venting (or anything, but I know this is a particularly tough topic)
I can’t believe they simply discarded Rose like she wasn’t with you all that time and you didn’t have a bond 😡
I know right?? I should go murder people in a series of weirdly specific mansions
sincerest: i briefly got this confused with saro's horror preference plurk
honestly just your last comment (i was following it last night! i am invested!) but it's true, you do live in a horror show
i lowkey love hearing about new and fascinating ways our bodies can fuck us over, though granted i would love it more if it was not happening to people i liked
regardless i'm happy you're alive and kicking (and/or screaming? internally?) and wishing you all the best with your eldritch horrors (both irl and in rp)
also please don't ever hesitate to reach out if you need anything, provided the anything in question is a european greeting card because i'm pretty sure that's about all i've got in my position
ugh to all of this! nightmare fuel and shit show!!! i didn't see this until now but i sure am here and reading and care about you 
makes perfect sense - you've been experiencing a lot of nightmare fuel yourself lately!
lol welp got the bill for my hospital adventure. Money continues to be imaginary
medical billing prices here are literally made up, sigh
jesus
and like! what would someone do, not play it? "sorry , it's too expensive for you to have saved my life"?
can't remember if I shared the bill from my current chemo, but it's like 150 thousand every three weeks
like my insurance is decent so I only have to pay a small fraction of all that, but the copays are death by a thousand cuts
and I just got an insurance thing that's like "oh yeah we don't cover home nursing" when I fully had home visits for 5 weeks in a row so like. THAT bill is going to suck
did they not get it authorized..... oh boy.....
they said they did! So now it's a question of "did they submit the wrong billing code"
and that's just annoying and a conversation I don't feel like having
oof yeah...
i hate billing conversations
had a weird one where I got sent a letter "you weren't covered" with zero context, do not appreciate the jumpscares