azurelunatic: FAQ with editing marks all over it. (faqedit)
Azure Jane Lunatic (Azz) 🌺 ([personal profile] azurelunatic) wrote2017-05-07 01:06 am

Some scribbles about vaginal brachytherapy

This was written up over about an hour, and several months after the fact, so there's a lower attention to detail than the original draft (which I am sure I have somewhere). But I figured it was time to get at least a half-assed version posted.

This details my personal experience with getting my twat irradiated. I didn't collect any trauma from this, and the medical professionals I interacted with all tried very hard to be helpful and respectful.

I had a visit to talk with my radiation doctor in late September. I brought my own uterus model, which turned out to be useful -- the doctor was a specialist in radiation, not uteruses, and they get a whole lot of breast cancer patients. So the intake routine for people like me was not as polished. I turned out to have a few suggestions for them. I was handed my own set of dilators and a tube of medical-grade lubricant, at no charge. The dilators were in small, medium, and large. Since I have an OEM vagina with a few aftermarket modifications, I didn't have to start at the even smaller sizes that are now available.

For those not in the know, vaginal dilators are like the most boring possible dong. There are some sweet silicone models with nifty handles, and there are some with various markings on them, but the ones I got were machined out of a white plastic that looked like someone had taken a lathe to a candle. They are not to be confused with the speculum, which is the duck-beak-like tool used to spread apart one's bits in order to poke and peer inside.

I was also the first person they'd had who used gender-neutral pronouns and such. In times of stress, gender is an extreme irritant, and instead of producing a pearl, I get cranky. There was one unified changing area -- an accessible restroom, a bunch of lockers, and a number of small changing rooms -- and two waiting areas off that, gender-segregated. For the comfort of everyone, I picked the women's waiting area. My companion got to come with me as far as the waiting area. (They said that I'd be able to wait in the recovery area, and that my companion would be able to join me there, but over the three appointments, it turned out to not happen that way.)

I got vaginal brachytherapy. If you're squeamish, don't google image search 'brachytherapy' -- there are pictures of prostate brachytherapy, which is a lot more invasive, and the pictures are straight-up body horror. (If you like body horror, go for it -- it seems really cool as a concept.)

I was straight-up terrified before the procedure, mostly because of not knowing what to expect. My partner has some very unhappy selfies of me getting changed and showing them the "No spiders allowed" message that I'd written in Sharpie on my thigh, with an arrow pointing up to the zone that was about to get irradiated. (The joke was that I was going to get centipede superpowers. It's more likely than you think.)

The first appointment took the longest. After changing into the provided gown (two sizes, small and large; I am a very large person and the large fit me handily with room to spare) I got ushered into the CT scan room, where I was directed to sit down on the scanner bed, centering myself over the piece of medical bondage equipment set up on it. This piece of equipment was a flexible rubbery plastic harness thing, used to hold the vaginal cylinder in place. Four lengths of twill-tape were attached to the corners; those would go over my shoulders in the classic banana-hammock style. "Medical bondage!" I chirped, causing giggles from the staff.

I was allowed to keep my phone pretty much with me, though it was not allowed to go into the CT scan machine with me. (My smartwatch was allowed to, though.) After the first round, I chucked my book, a small sippy-straw water bottle, and my phone into a mesh bag and toted that back with me, to keep everything easily contained so as to not cause more work for the crew.

After my medical bondage banana-hammock was put on me, they arranged me on the table, with wedges under my knees so I could remain in position without moving for the next hour and a half or so. They were comfortable enough that I didn't have a problem; I usually get a sore back from lying flat, but this was okay.

I had warned my doctor that my internal muscles were pretty strong. She took this as a joke or something, because she was very surprised when she could not in fact insert the cylinder because I was so tense. I relaxed, and it went in helpfully. The cylinder is a plastic jobbie with grooves every few centimeters -- if it were a dildo, it would be a little too bumpy to be strictly pleasant. It's sort of a squared-off beads arrangement. The center is hollow.

The physicist showed up next, to attach a tube to the cylinder. All of the physicists I encountered over my visits were male. Hint, hint. (The senior guy had gone into medical radiation before they offered degrees in that, so he'd basically had to roll his own. He had great stories. It was awesome.)

Once the cylinder had been placed, I got shoved into the CT machine. This, again, was a place where size matters. I was very carefully arranged so no part of me would bump into the sides of the tunnel, and told to stay very still. Then I was zipped back and forth on the platform as the machine made all sorts of interesting noises. (The cooling units in the walls made other noises. Very interesting, and slightly intimidating, but nothing bad happened other than my arms getting tired.)

The CT scans got a good picture of the layout of my internal organs in relation to the cylinder. At this point, the physicist and radiation doctor got to play a fun game of Radiation Sims, where they sent a bunch of possible patterns of radiation into the simulator, and saw which ones nuked my bladder and such, and which ones didn't. That part took a reasonably long time. In retrospect, I probably should have taken them up on the offer to hang out in the recovery area with my companion. They always book the first appointment of these sorts for a longer time, so they have time to play Radiation Sims and get everything right. (They also check the math by hand, but Radiation Sims means they can get a good plan much faster.) They re-scanned me a few times as well.

The physicist would later tell me that the larger the cylinder you can tolerate, the better -- the attenuation of the radiation field works in a way such that you get more bang for your buck and more even exposure if the source is a little further away from the vaginal walls.

After they were done scanning, they transferred me from the scanner bed to the rolling bed they would use to move me into the treatment room. They have these nifty hovercraft-like transfer tools now, which makes it a lot less likely that someone might drop you. (This was the point in the situation where the lack of thorough briefing on pronouns became super apparent, as the nurses who were trying to get it right *to* me proceeded to "she" me to the other folks who were helping with the transfer.)

Then we also had to wait for The Vault to be free.

The treatment area for the radiotherapy was SO NEAT. It's a double-sided concrete chamber, each half curled on itself like a short snail shell. Radiation doesn't like to go around corners, see. Inside the room there was various equipment, but the room was dominated by something that made me double-take and giggle: the linear accelerator that they use on a lot of breast cancer patients looks for all the world like a giant stand mixer, to the point that at some point I am going to write a scene with a small child zip-tieing a shorn-headed Barbie to a pink hospital cot and putting her under the KitchenAid because the Linear Cellerater is going to make her better.

I didn't get to experience the liner accelerator in action. They unlocked the closet and brought out the brachytherapy machine, which has this wheel-like thing on the front, sort of like an old-school rotary telephone dial. One wire was plugged into it; they hooked the thing to the wire sticking out of my crotchular region. They had music playing for me when I went in there, which was a kind touch. They'd asked what I liked. So I got some R.E.M.-trained Pandora. I was still allowed to have my phone, and there was internet inside. No cell signal, of course. So I tweeted from a place I had no business tweeting, which was pretty nifty. The lights were covered with those artificial sky panels, and someone had put up a Superman sticker. Hee.

How the brachytherapy works is, inside the box there's basically a tungsten pressure cooker with a very thin wire with a radioactive iridium "source" integrated into the very end. There's a nearly identical but non-radioactive wire as well. The wire is propelled by little motors that spin it out. The wire travels through the tube attached to the front of the machine and into the cylinder lodged in my bits. The first wire makes sure that the setup isn't wrong in some way, like a too-tight bend in the tube. Once they've verified that everything is as it should be, the second wire zips out to the fullest extension, and is withdrawn according to the pre-determined program, dwelling at each stop at the programmed amount of time, so as to irradiate only the layer around the cylinder to the therepeutic depth, and to not zap my bladder etc.

Once it's done with the program, it's drawn back into its little tungsten box.

The whole program takes only fifteen minutes or so, which is a relatively short time if you're busy tweeting and enjoying the music. I was nervous the first time. They're watching and listening through the monitoring setup, and if things go wrong, they'll barge in and use the hand crank on the side of the machine to manually withdraw the sample. I didn't feel anything, really, not even a sense of warmth.

The physicist came in first, and swept over me with the geiger counter, just to see if I was radioactive. (I asked him how many bananas I was. He didn't tell me.)

The radiation doctor and the nurse untied my twill-tapes, releasing me from the medical bondage. Seeing that they were done, I ejected the cylinder. They went to pull it out. "... You already got it out!" she said, with some evidence of surprise.

I *told* her those muscles were strong...

The nurse handed me a whole whackton of paper towels, and they sent me off to the bathroom to wipe away the gracious plenty of lube they'd used to insert the thing. It was basically enough lube for a fisting party. It needed paper towels.

I got cleaned up and dressed. Then I went off home. I wasn't feeling particularly bad, but over the next few days I was napping at nearly post-surgery levels. There never was any nausea or digestive side effects, but I did get a little pain around the urethra. It was like the warning pain before a UTI hits full-bore. There was also a little mechanical pain in the vagina, because of the ribbed-for-the-CT-machine's-pleasure grooves in the cylinder. I can't remember if I took any ibuprofen or not, but if I did, it was only in over-the-counter quantities. I had access to 600mg and 800mg, but I never needed that, nor anything stronger.

The after-effects from the third treatment were the worst. I was fairly well knocked out for a few days -- but I didn't need the nap until after I got home. That treatment plan takes place over a week and a half, fairly evenly spaced out. I think it was Tuesday, Friday, Tuesday. It did leave me driving myself back in some pretty gnarly traffic, but I was safe to drive the whole time.

The third and last appointment, of course, was accompanied by Other Things Going On In My Life -- there was a visit to Yet Another Sleep Doctor, there was a field trip to rescue a friend's car which had been towed, and then I zipped off to my appointment. That was definitely a day, all right.

It's probably worth noting that at that point in time, I was enjoying chronic sleep deprivation from other sources, so people who are not as short on sleep as I was may not be knocked out so thoroughly. I enjoyed a very nicely elastic vagina before the radiation, and while there was some damage (particularly to the delicate erectile tissues just beyond the walls), I was not one of the unfortunate folks who experience vaginal stenosis (a shattering loss of elasticity and pain with anything that dares disturb).

A little while after I finished my last treatment, I showed up to get a tour of the facility. Usually the tour is offered before the treatments start. Usually someone else gives it, but my companion and I got the lead physicist. That was really an awesome experience, and I highly recommend it. Since both my companion and I have some science backgrounds (my companion more than me) we got the fun stuff. Then we got to talk with the person who basically does user experience, and recommended a few refinements, like pictures of the vaginal brachytherapy equipment for those of us who get that. Or maybe have some old equipment as a demonstration model.

At the beginning of the conversation, she was of the opinion that of all the treatments, she would least prefer to have the vaginal brachytherapy; after my talking about my experience, she actually thought that would be the best. So I'm glad to have reassured someone, especially someone in charge of helping orient people to their experiences! And we also talked about the possible experiences of transgender (both binary and non-binary) patients, in a way that I hope helped future people. Since this was the Oakland center, the odds are reasonable that I won't be the last...
hammond: (Linac)

[personal profile] hammond 2017-05-07 11:22 am (UTC)(link)
I'm glad you had a mostly positive experience in my work-land! It's actually fun to read about from the patient perspective (I always make time to take patients aside for 10 mins before we do anything so they're prepared -- but I haven't done brachy in a while).

Let me tell you, the side effects would probably have been worse from external beam as we get a whole lot of the rest of the pelvis too; brachy is super cool at being localised. Although brachy is done in higher doses for shorter periods of time so the lethargy in particular can be more intense.
xinef: (Default)

[personal profile] xinef 2017-05-07 07:54 pm (UTC)(link)
Really interesting read. Thank you for taking the time to write it up. Hope it all works out well.
pauamma: Cartooney crab holding drink (Default)

[personal profile] pauamma 2017-05-08 04:13 am (UTC)(link)
Yay for boring and uneventful procedures?
corrvin: a Courier daisy wheel text "definitely my type" (my type)

[personal profile] corrvin 2017-05-08 04:40 am (UTC)(link)
I'm glad you're doing better and this was a reasonably okay experience.

Especially, thanks for mentioning how the pronoun thing went. I'm in the middle of my own medical stuff and just don't have the strength right now to fuss at the doctor's staff about it, but I'm glad somebody else is asking for that stuff so I won't always have to be first.
vass: an orange rooster crowing (Chickens)

[personal profile] vass 2017-05-08 05:08 pm (UTC)(link)
My partner has some very unhappy selfies of me getting changed and showing them the "No spiders allowed" message that I'd written in Sharpie on my thigh, with an arrow pointing up to the zone that was about to get irradiated. (The joke was that I was going to get centipede superpowers. It's more likely than you think.)

Peak Azz.

Thank you for this write-up. It was extremely informative and interesting. I'm glad for the future patients who'll benefit from your UX refinements.