gwyn | DRAMA BUTTER

(Subject refers to a picture of Isabella Rossellini on the Tom and Lorenzo fashion site a number of years ago, where she wore a gown that had Madama Butterfly printed on it in letters. The way the dress folded made it look like it said DRAMA BUTTER, and in my head, this entire stupid story has me shouting DRAMA BUTTER all the way through it like some gibbering, jangling jester.)

Well, I definitely fell down on the updates part of dreamwidth, and then on the "post about something fannish for once" part. In my defense, it has been A COUPLE OF WEEKS. Just...so much. I'll try to organize in bits so you don't have to read all of it. Like I said, I've been wanting to use this as not just a vehicle to communicate with friends, but also to keep track for myself.

I was supposed to finish radiation treatment Wednesday April 19...[John Mulaney voice} AND THEN I DIDN'T! Instead I went to the emergency department (what they apparently call it these days instead of emergency room) at the nearby hospital for 8-1/2 hours.

I had started having new pain across my shoulders and neck, where before I'd had pain concentrated on my right side where the lesions in my C6 were. The substitute doc I saw on my doctor day the week before that didn't seem concerned (you ever meet someone who's like...just a wet rag of a person? No personality, no nothing. Just porridge there? He was like that--the exact opposite of my radiology oncologist who's so upbeat and soothing). But it kept getting worse, to the point I could hardly get out of bed or pick up the cat dishes, and so they squeezed me in on the second to last treatment day and immediately Dr. Mehta was like "new pain at this stage of radiation is very concerning."

The big problem is that he wanted an MRI stat, but it would take too long to schedule one, so he recommended I go to the ED. I did not want to, but I recognized how worried he was, so I agreed, and they were like "we can get an ambulance" and I was like don't be silly, it's two blocks away so I walked there, which seemed to be something commentable the whole time I was there. "Oh, you're the one who walked in?" It was funny to me. Anyway, I'll spare you the details, but it was awful waiting, and they admitted me fully as a patient because I could not get the MRI otherwise, and they put a fucking IV in me and everything. After a few hours I ended up in a cubicle with a curtain and surrounded by people in crisis, including someone who screamed and moaned and generally treated the staff like shit the entire 8 hours I was there.

EDs are a true nightmare in our hellscape now. People in halls, people spilling out of rooms, people in crisis everywhere, cops everywhere. Jesus. The US is the shittiest place. ANYway, they didn't seem interested in me at all, they just parked me and locked me in a bed, the machines wouldn't stop beeping on me so I had to constantly call the nurse to get her to turn them off, and when I had to take ibuprofen for my pain, they would only give me these little half cups of water like that would help--I kept explaining I couldn't swallow from radiation effects, but they weren't interested in my problems. Hours ticked by. I was terrified that my car was going to get towed and my phone battery was dying and of course, I hadn't planned for this so I didn't have a charger.

Fortunately

belmanoir was texting with me like she always did before I went to treatment, and she is A LITERAL ANGEL because I was so stressed that she started asking me about the parking situation (it's a bit strange, Swedish hospital offers a row of parking spaces in the Bank of America parking lot to radiation patients, free, with a placard in your window, but the lot becomes pay after hours). So from Philly, she looks up parking lots on some place called Parkopedia and sends me an image and asks if that was my lot. Then she finds a phone number and somehow gets hold of an actual human being, who says that they don't patrol that part of the lot so no one will tow the car; the worst that would happen is that Swedish, since they control it, would give me a ticket and then I could work it out with them the next day. Relief just flooded through me. My new therapist pointed out that the car being towed was something I felt like I could control in an uncontrollable situation, so of course it was the thing I was obsessing about.

So eventually they came to take me to the MRI after about 5:30 pm, I think I finally got there around 6, but then had to wait in this freezing hall for a while. I've had a lot of MRIs and if you've ever seen them, they're big machines with a tunnel you get pulled into. But this one...this one was a capsule. It was a coffin. I've never seen anything like it, and apparently no other place still has one of these around. It's literally a capsule and your arms are pinned tightly to your side and the roof of it was less than three inches from my face. I had to spend an HOUR in it, and it kept pulling on my IV, and it was just fucking miserable. No one fatter than me would be able to even use that machine. It was kind of inhuman.

So they put me back in my room and by then it was starting to get dark. I'd been sobbing off and on, before they finally came to get me I'd just given up on being in bed and made them put the rail down so I could sit up and I just put my head in my hands and sobbed. No one cared, even though they passed by my curtain a number of times. So when I got back I started crying again and eventually I asked the nurse who clearly did not like me if I could go home, but she said I had to talk to the doctor about the results. I'd seen the ED doc once earlier, but I never saw her on the floor again, so that filled me with misery.

Watched hours tick by. Machine kept going haywire. Had to call nurse, and this time it wasn't one of the younger nurses but an older woman who was just like "OH honey" when she saw me crying. The MyChart chime sounded and I looked at the MRI results, and it was not good news--it said the lesion had been growing larger. So I asked the nurse if I could just leave, that I would sign anything but I wanted to go home, I had the results and I would talk to my oncologist in the morning etc., and she was like "We really don't advise that, but if you insist, I can get the paperwork started that you're leaving against medical advice." And I was like bless you, yes, please, I just want to go home.

I was so worried about Blues, because I'd had to go in early so at that point I'd been away from home for over 10 hours, and he wouldn't have food. No one nearby had the back door code. The nurse also said she'd see if she could light a fire under people to talk to me. When she came back, she said the doctor really wanted to speak to me so she'd start paperwork and hopefully the oncologist would be getting back the ED doc soon and then both things would converge. Unfortunately, that sort of happened and didn't.

I'm not sure which oncologist she spoke to, but the doc finally came back and said they were extremely concerned the lesion was growing and it was very dangerous for me, so they wanted to get a neurosurgery consult, and the fastest way to get that was staying put in the ED. I absolutely didn't want that, so I begged to go home. I said I understood what they were telling me, but that I just had to go home. I could tell no one wanted to let me go, but they agreed. I tried hard to explain I wasn't trying to be a bad patient, I just had not expected to spend my entire day in a hellmouth and there was no backup for me at my house, etc.

The nurse came back with the paperwork, and the doc wanted me to start a steroid so they could get the inflammation on my spinal cord down, so I had to wait for the medicine and my discharge papers. About that time, Dr. Mehta called me--It was 8:30, so I was surprised. He really wanted me to stay, but he understood why I didn't. He was deeply concerned that the pressure on my spinal cord or a bad move with my neck could spell disaster. He promised to call again in the morning, and they let me go, and of course, the IV coming out meant blood went pouring everywhere, on me, on the floor, everywhere, so I was shaken up even further by that, and when I walked out, I forgot the paperwork and the prescription for steroid, leaving them on the hospital bed. But I walked back and my lil car was still there, no ticket. It was dark so of course, hard to drive in, and freezing fucking cold, but I was never so happy to go home.

Blues did not give a shit about me coming home. So that was great. But I collapsed and cried a lot and went to bed with an Ativan.

I didn't know if they'd want me to come back for treatment that day, but I figured I'd wait for them to call. I was awakened early by a spam call, but kind of glad I was because I was at least awake when Dr Agarwal, the hematology oncologist, called, and could have a conversation. He said I'd kept them up late that night--apparently also looping in a neurosurgeon to look at this stuff. He was very alarming--his greatest fear was me becoming a quadriplegic and his language was...vivid and freaking me out a bit. He wanted me to go up to the Swedish hospital campus a bit east of the ED one, where all the neurosurgeons are, and check in at the ED there so that I'd get a fast consult. They might have to rush me into surgery to fuse my neck or something. I was really freaked out about that--I said, look, I need 24 hours. I can't just go there today, la de da. I have to organize care because my friends would need time to figure out how to make it so I could recover at my house, which is so not set up for something like that, and I had to get care for the cat. He reluctantly agreed to a reprieve.

I called my friend Keith, who was planning to come by the next day, and said, Uh, hey, about our plans for tomorrow... So he and I started figuring things out, with me being pretty on edge and kind of weepy. After a few hours, though, I got a call from Dr. Mehta, and he was like "Belay that order." And I was just like WHAT IS HAPPENING. He said that they'd all been studying all my scans and doing comparisons, and had had a bit more time to really delve into the images, and the neurosurgeon was not fully convinced that the myeloma was continuing to grow. That it could have been growing in the early stages of radiation and we're just now seeing the effects because I had new referred pain. So Agarwal would prescribe a hard core steroid to get the swelling down so they could really look at everything. I was just like man, this is a totally out of control Six Flags insane upside down rollercoaster and I think I want off. He said the neuro would call me and then we could make a plan.

I heard from the neuro the next morning and man, he was fucking great. It was like talking to one of my friends, he was breezy and involved and very confident but not in that god complex way, just confident he could treat my situation. He said that the thing about myeloma is that it's insanely radiosensitive, which is why they do radiation first, unlike with other cancers. So they don't usually see this sort of new pain situation. But he said that he thinks if the cells are not dying off around the edges of the lesions, it's treatable with this procedure called CyberKnife (which in my head is CYBERKNIFE all caps, of course), which is a high-dose radiation beam that they use to clean away the lingering disease in a few treatments--noninvasively. I was just so relieved. Like, he could not have said anything more hopeful to me that noninvasive. I said "so like a sewer cleanout" and he said "Yes! Exactly." I really liked him, and I looked him up afterward and he speaks like Spanish, French, Mandarin and freaking ASL, and he has pages and pages and pages of testimonials. He gave me a battery of questions and said that if any of my answers changes from negative to positive, to call his cell immediately. I felt like I was in really good hands.

So I went back to treatment and it was really nice because Keith came with me. I got into this conversation with another patient, because she'd wondered where I went, and apparently everyone was aware of the DRAMA BUTTER and was asking me about it. Afterward, Keith and I went to the credit union, where I put him on my bank accounts, so I'm starting to get a lot of my detail ducks in a row now in case of another emergency.

So then I finally got to finish radiation on Friday. They let you take home your mask, of course, and they have a little thing where they ring a bell and everyone comes out and fusses over you. It was cute but embarrassing, especially after all the drama. When I was on the table, the patient I'd struck up the conversations with apparently had brought me flowers, so when I got out the desk person was like "you have a surprise!" I also had had the chance to actually see Dr. Mehta and talk to him in person, which helped a lot to make sense of what had happened. He's just such a nice guy. I told him, man, I don't know where you found the neurosurgeon but that guy is amazeballs.

I tried to wait for the other patient, but I finally had to go so I left a note for her thanking her for the flowers, and when I walked out of the place with my mask and the flowers, everyone was like "you finished!" and genuinely excited for me. They really are so nice up there. They're dealing with scared and anxious people facing something terrible, so of course they are trained to be compassionate, but I was always impressed that they didn't let down that training at all no matter what.

I have my mask now, and the woman who's helping me with my garden and I are going to figure out some way to grow something on it.

The oncologist's office set up an appointment for me on Friday to start the next process. No one told me when I made the appointment that there would be an infusion afterward; I didn't find out till I saw MyChart. That really annoyed me--and when I got there, they said I needed labs, which also had not been mentioned. I asked Bob, my ex, if he could drive me, because I didn't know what I'd be like afterward.

It sounds like there will be SO MANY DRUGS. So many visits. Injections and pills and infusions. They want to put the myeloma in remission, and build the bone back up with infusions of this terrifying bone drug, and then do this complicated maintenance drug with a weird schedule. I'm a bit confused because I thought I would have to go up there a couple times a week for injections, but then he said I'd be having a drug educational meeting set up with someone which sounds a bit like what they give to new diabetics taking insulin. So right now I'm back in confused darkness. I guess I'll just wait to find out.

I...really had a rough time when I got there. For some reason it all hit me. So this is it, I am dying, and we're just gonna keep trying to push the dying part back, blah blah. Like I said, I have no issue with death, I'm ready, I'm okay. I just don't know...do I really need or want to do this? I love Blues more than life, but something's really wrong with him right now and he might not be around long.

The bone drug is kicking my ass. Yesterday was worse than today, but it's like I'm drunk and someone stole all my muscles and bones. I'm weak as a kitten. I'm trying to take care of stuff around the house and keep active, but jesus, between the steroid sweats and the bone pain and all this shit, I'm like...this is the rest of my life? I guess I'll see. I'm not the only one going through a lot of shit, either, and I feel like I'm not a good friend because I am so focused on this crap. I want to be there for other people, if I'm still going to be here. Helping is the thing that would give this meaning, I suppose.

I'm getting my ability to swallow back, which is a huge relief, I will say. I still sound like a two-pack-a-day gal, and I'm not sure at this point if my voice will come back, but unless I have to undergo CYBERKNIFE, the throat damage could still heal (apparently that's the biggest risk factor, is just the high intensity of the radiation). And I'm trying to figure out financial stuff, home stuff, start really just...buttoning everything up as tightly as my dad did for me before he passed, so I had an easier time with the details. And oh my god, people have given me so many Thin Mints from Girl Scout Cookie sales that y'all (lookin' at you,

sperrywink), I have boxes of Thin Mints now till the End Times. And I can swallow them!

Thanks again, my wonderful pals, for listening and helping and all the everything you've offered me. You are the best.
💜

Current Mood: lethargic

Flat | Top-Level Comments Only

From:

batdina

sending much love from down south.

From:

leela_cat

Love you <3

From:

princessofgeeks

Thanks for the update. Wishing you all the best.

From:

jenab

Wishing you all the best.

From:

mecurtin

I think about you a lot. I wish there was more we could do to help you.

From:

muccamukk

Wow. That's A LOT.

Sending you all our live and prayers.

From:

musesfool

Thanks for the update. <333

From:

aurumcalendula

*hugs*

From:

raine

(((hugs)))

From:

kore

HOLY FUCKBALLS. You are a fucking Spartan, no lie, like that guy who put his hand in the fire. I am amazed you made it through all that WHILE so sick and in so much pain. But yay for the great neuro and CYBERKNIFE.

From:

gwyn

I like the thought of being a Spartan. I am thinking of you guys, and hoping that you have support also for what you're going through. I hope you'll keep us updated.

From:

twistedchick

Love you. Sending love and Reiki.

From:

morgandawn

I do not like the storylines of this season. The writers suck.

As someone with chronic pain and health issues - simply surviving to another day is being a good friend. It sounds a bit weird to say it like that, but not-me is a lousy friend. Me-focused-on-my-own-crap can still poke my head up feebly from time to time.

Thank you for the updates.

From:

gwyn

I know, if it weren't for the strike, I'd walk in to the writers' room and fire the lot of them. Hire Mike Shure's usual crew, I think they'd write me a much better ending.

It's a good point about surviving--I just hope I can get to a point where it's less me me me talking about myself, and able to do more for other people.

From:

sakana17

{Many hugs}

From:

dorinda

*hugs from afar*

It's just so unnecessary for the hospital surroundings and behaviors to be so nightmarish! I'm mad that on top of the difficulties and discomforts of treatment, you have to sit there for way too long in a hellhole. Grrrrr.

Cheering you on with your CYBERKNIFE! A superhero name for you if ever there was one. ♥

From:

gwyn

I want to make jazz hands every time I say CYBERKNIFE too. It's just honestly such a great brand name.

From:

silk_knickers

This is so much to deal with! I hope your situation improves, and that you keep finding good-communicator physicians and nurses.

From:

gwyn

Thank you so much--I really appreciate the good wishes. 💖

From:

maygraderhema

You can use your CYBERKNIFE! to spread your DRAMA BUTTER like one of those fancy butter knives at a sit down dinner. Make sure you accidentally flick some butter at the unhelpful (but probably overworked) nursing staff, but only a little bit.

I've only done AMA twice, but the second time, I looked at them and said, if you don't bring me the paperwork in the next fifteen minutes, Imma gonna walk out anyway and you can do the paperwork on how you lost a patient. It's not that I don't understand ( I worked in an Emergency room a zillion years ago), and I get how chaotic and overwhelming it can be for the staff -- but sometimes they forget it's twice as devastating for the patients; who are also overwhelmed and usually in some varying degree of scary discomfort (or they wouldn't be there, would they.)

I'm so sorry they made it even more traumatic for you on top of the pain and that the MRI machine was a scary like bad sci-fi version of the technology. I *hate* those little ones. I'm not a huge fan of the big ones either but those are just...bleeeeech, NO!

You did amazingly well; tears and all and I'm glad you got a boost with the neurosurgeon. He sounds awesome. And bless the flower lady, too!

You're still fighting, and it's okay to keep fighting until you don't want to anymore; but you could turn a corner today or the next day -- sounds like if they could get the pain under control, you might have some headspace to think instead of react and I'm praying really hard that you get that space and time.

I advocate continued thin mint therapy.

Love you, my friend.

From:

gwyn

Ah ha ha ha ha I love that image of cyberknife + drama butter.

I felt like such a pain in the ass doing the AMA thing, but I was just...so broken down by then that I couldn't stop obsessing. And it's funny--I was doing things like traction on my neck back in February and all these exercises, before we even knew I had a hole in my neck, so I guess in a way I didn't have the ability to be as scared as they thought I should be. LOL. Now, of course, I'm like "oh, my neck, I better support it with my lil hands." It's all so weird.

From:

marthawells

so many *hugs*

From:

minim_calibre

The mask is so cool in person. And I am sorry about the shitshow. Which autocorrect thinks is shot how.

From:

talitha78

Wow, you have really been through it. I'm so glad you didn't have to have the fusion surgery. Not that I regret mine, but it really knocked me out for 3 months. I hope things get a little bit easier soon.

From:

gwyn

I was going to ask if you'd mind if I got in touch, because I really would like to hear what happened to you and how you are. Now that I'm hearing all these things, I feel like I have some vague inkling of what you must have gone through, and I hope that things are getting better.

From:

kass

Oh honey. OMG this is bananas. This is so much.

I am sending so much love from afar.

From:

kirbyfest

Sending love.

From:

dine

just wanted to let you know you're in my thoughts - and I appreciate updates when you can. even if I can't make things magically better, it's good to know what's going on.

and if there is *anything* I can do from a distance, please please let me know

From:

gwyn

Thank you so much, you're so kind. 🥰

From:

mackiemesser

I am incredibly impressed that you are keeping it together this well! Like, the roller coaster of okay-absolute shit!!!!-better-impending ordeal would lay anyone completely out, and you have retained sanity. I would not retain sanity, let me tell you. I am trying to come up with a way to express this without sounding like some kind of demented cheerleader/inspirational quote-a-day calendar, but, just, damn, hardcore.
Though I expect you are very tired of all this,and would much rather not be any kind of core, and would just like it to be done so you can enjoy Spring.

Look, if CYBERKNIFE doesn't involve neon colors and cool sunglasses what is even the point?

From:

gwyn

That is so unbelievably kind of you, thank you so much. It helps so much to know you guys are out here, cheering me on and also recognizing the bleak absurdity of the whole thing. It's a huge help!

From:

mackiemesser

\o\ \o/ /o/

That's ^ about as close an approximation of cheering as an ex-Goth can get! I can "Woo!" in an ironic manner, if that helps. :D

From:

przed

I'm so sorry you've had to go through so much. The illness is bad enough, but that ED sounds like next level awful. I'm glad you have good medical people on your side, and friends nearby who can help. I'm thinking of you.