I have determined that my tits are Too Much Problem. I found myself the one (1) non-pediatric Gender Health provider in this system in the state. A mere 10 miles away! We had a quick appointment in January, the soonest I could get an appointment, having scheduled several months earlier. It was a very brief appointment, and she seemed substantially overworked. She referred me to plastic surgery, after determining that my tits were causing health problems including one ER visit and an ongoing prescription, as that's often easier to get authorization for than pure gender reasons. The hair situation I'm on my own.

Within the week I got a call about scheduling my scan. "My what now?"

In very small and polite words, I told the nice scheduler from the imaging place that I was about to have a very detailed, very expensive imaging session at the cancer center, and I was Not Fucking Having a goddamn mammogram this year.

When I hadn't heard anything about the referral in about a month, I called back to check on the referral. Apparently it had Not Been Done Correctly. I got it put through, correctly this time.

I shortly got a call to schedule an appointment, some months out, to consult for a reduction. Beginning of April is fine, right?

End of March, I get a call. Operating room time just opened up, and since that is a scarce resource, I was being bumped. Next available appointment end of April. *sigh* Okay fine, I see that taking OR time when it's available is a good quality to have in a surgeon, and I am satisfied that when it is my turn, I will be treated with similar priority.

Meanwhile, I get a notification from the pharmacy. A prescription is on hold, because my insurance needs either more information from my doctor, or for my doctor to give me something else. I look at the medication. I compose an email to my doctor. It's the muscle relaxer, and I amuse myself by filling the remainder of the character count (exactly) with synonyms for "my large breasts". (I recruit the group chat to help, wind up within a few characters, and use line breaks to help make it more readable and use those last two.)

The pharmacy says the insurance company won't cover this without more information. That message may not have made it to your desk because it's for the prescription that the person covering for you put in for me.
Currently, my magnificent bazongas, my ridonkulous titty-witties, my humongous knockers, my oversized fun-jugs, my massive melons, my cuckoo-for-cocoa-puffs coconuts, my spacetime curving phone booths, my hefty hooters, my ludicrous ta-tas, my royalty-sized marshmallows, my titanic teats, my unop-tit-mized milkers, my gonzo jigglypuffs, my octuple-D K-cups, are putting significant strain on my shoulders, back, and neck.

One of the ways this manifests is when I am not lying down, my neck is at risk for cramping. At least once a week I find myself with a warning twinge that tells me that I should grab cyclobenzaprine or lie down or both. Mere stretches don't fix it, but I have some in my daily routine (overseen by my physical therapist at FHCC). One of my past emergency department visits was for a screaming charlie horse of my neck that I was unable to manage at home. That was the visit where I first got cyclobenzaprine, which helped significantly. A connection I didn't make until afterwards was the day before that charlie horse was the first day I had worn a real bra in quite a while. It was notable because I had been at home without need for one and then had a Craigslist freecycling meetup where I felt a bra was needed.

My reduction consult is the 29th of April.

I sent that yesterday, after much giggling.

Today, I fielded a call from the office of the plastic surgeon. "Ah, must be some pre-appointment stuff," I say wisely to myself, and answer.

It's an assistant of some sort, who tells me that this office does not operate on people over a certain BMI. "But call us back when you've--"

Fortunately for all of us, they were able to halt their mouth's autopilot about there. (I've done phone work. I recognize the symptoms.)

"I know you don't make the policies," I said, and hung up before I could say anything else.

First I plugged numbers into a little calculator that was not designed to reverse the formula, but kept at it until I arrived at the magic number that I would have to beat. Then I did a little math. Based on that, they would want me to lose, hmm, yes. And about that goal weight-- oh. Oh. I emailed my own doctor with a short summary of the details ("After I am done having an absolute breakdown I will check into my other options").

I was crying by the time I called the chemo nurse line. The goal weight was one bad chemo session away from my high school anorexic low. The amount to be lost was not one but two tennis ball sized tumors away. I told the nurse's assistant who answered about the recent history I was working with here, and then fiercely said that I wanted the most radical mastectomy they had. Five minutes before, I'd been fine with the idea of a modest reduction but now I was thinking about paper guillotines.

She said she'd check with the doctors and see where they could refer me, and would try to get back in about 24 hours. Good.

Substantially calmer, and getting angrier, I emailed my gender care doctor, to convey this surgeon's specific threshold of underqualification, the magnitude of difference, and requested a new referral. I told house chat, and called Nora.

Nora provided Ianthe memes and brainstormed ideas for prosthetics. I could try for ones that fit my current bras (would still be smaller than my actual bazoingas) and see if we could fit in some zippered storage space.

Alex had a prescription to pick up and so did I. I decided to go in to talk to the staff about the situation.

At which point I learned: not only is my insurance company dicking me around about the muscle relaxer, but I have another prescription on hold because it's dicking me around about my CANCER. PATIENT. PAIN. MEDICATION. (In addition to the FUCKING PET SCAN, which it had an ENDOCRINOLOGIST deny, because I "wasn't" getting "traditional" treatment for my cancer. Yes, my oncologists Happened to them.)

Yes, I McFucking lost it. Which looked a lot like me calling the insurance company most of the names in the book, and the pharmacy tech nodding along with enthusiasm. "So, do you want the [small number] or should I tell your doctor ...?"
"I'm going to go full turbo-Karen here, please," I said, and then she complimented my dress and I complimented her pins and I wandered off to look at the summer selection of plastic dishes while she stuffed pills in bottles for me.

When I got home:

Hello,
Dr. [name] has moved out of state and is no longer seeing patients in clinic. You can schedule with another provider in our office or contact your primary care physician for alternate referrals.

Best,
[]
[] Women's Center

There is one (1) adult gender care provider in the state. This one is 30 miles away, specialty Urogynecology.

I am having what amounts to the same conversation with a succession of health people, and that amounts to:

I am not having a mammogram this year
BECAUSE
I am a stage IV cancer patient
here is the date of my next PET scan
THAT SHOULD BE SUFFICIENT I THINK

I suspect that I will also have this conversation with my insurance fairly soon.

Despite having to show up at 6 the fuck in the morning, being behind a horrifying collision on I-5, getting lost around the hospital in the dire combination of one-way system, construction, and dark; having to hike to various places around the hospital due to blocked entrances because of the early hour and construction, a lack of available wheelchair booking because early, and general WOEBUCKETS, the procedure was genuinely fun.

( Getting there and meeting the crew. I picked R.E.M. for my sleepytime playlist. )

( The procedure went fine. Except for the music. And that went AWESOME. )

I was declared Recovered and out quite quickly, signing the release paperwork just before 10:30. Belovedest picked me up, after another few rounds with the one-way system and construction. While my nurse and I were waiting (she'd wheeled me out) we saw several people run afoul of the one-way system.

I located a spot for hamburgers. We found a parking spot somewhat nearby and ordered. That took a while (a catering order came in just about when we ordered) but as we were finishing up, I got a call.

Turns out the linear accelerator is having a bad day, and my doctor said that I can make it up later. So my new radiotherapy end date is the 22nd, which actually works out okay. It's a tiny occasion, and it will be nice to have someone with me to hear it when I ring the bell. So we went home.

The trouble with the planner I got to try and cope with the current shenanigans (neg) is that the baseline setting is for bad days.

The other problem is of course that it's coming from a very different place than I am. Also that I don't (currently) have a laser printer, and I don't have a copy of Corel Presentations or WordPerfect.

There is an inkjet, though, and I do have access to google docs, which is almost enough. And I've got the required paper guillotine and a dinky little 6-hole punch.

What I really want, of course, is my existing bullet journal layout formalized and scaled up to half-sheet, adding in modules suggested by the planner. (I've already moved the Positivity Exercises section to the end of the book, because it bears so little resemblance to stuff that helps me. I've vandalized the worst of it already, and that has brought me great glee. My three Positive Words That Bring Me Joy are, in order:
FUCK
THAT
SHIT
and I have, according to the instructions, illustrated them and imagined the reactions of my BFFs, who are 100% cheering me on as I cope in my own special way.)

( Read more... )

I got in to see Dr. Twatbeams yesterday, got a brief pelvic exam, and got my planning CT and the leg immobilizer cradle. If you've seen racks of blue fabric covered rectangular molds in a treatment room of some sort, molds with flat bottoms and contoured tops with places where specific people's specific body parts would fit, you've seen 'em. I suppose there are other colors of fabric possible, but these were various blue.

The mold was warm like a nice swimming pool when they formed it; it won't be warm when I go back. But they'll have warmed blankets.

Upon hearing about the commute and the sleep disorder, the two proposed AM treatment times got shoved to late afternoon. It's every schoolday starting the 31st going through the 21st.

Guide Dog Aunt is managing Woodworking Uncle's current medical situation (surgery on the 31st), and Aunt F has specific California obligations. So we're working out our transportation options. And we've got options! They all seem within budget.

1. I drive myself.
2. Car, bus, and taxi, with a rolly boi of some description. (Drive to park and ride, take a bus as far as it goes, get a taxi mainly for the hill.)
3. Power chair (once re-batteried) and bus.
4. Scrounge around to arrange rides for the later weeks, after I am le tired.
5. Hotel on the clinic shuttle route for the weekdays.
6. Belovedest burns some combination of time off (several options available).
7. See if the clinic has a better connecting shuttle.
[Edit:] 8. Steph takes some ride shifts!

Dr. Skelebones says that at this point she's not doing surgery, and in fact is handing me over to colleagues because of reasons.

( Reasons! )

So because of all of that, I'm getting handed "back" to Gyn-Oncology. ("Back" here is in scare quotes on account of the whole 2016 thing was in a different state and through a different medical group.)

I have appointments with Dr. Bitsblobs and Dr. Twatbeams on the 16th. As new patient appointments, those appointments can be telehealth. So I've got an hour of video chat with the first bone, half an hour to recruit my forces and refresh my drinks, and then another hour of video. I suspect that I won't be kept waiting for an hour on the video appointment.

Got my PET scan today. Expecting results in the next 1-2 weeks, probably.

Scan itself went fine: fasted, the nice tech took my blood, shooed Belovedest out of the room before I got nuclearated, got me some nice rads & sugar water via IV, took my music request, left me to let it settle in, and finally conveyed me to the scanner room. Since I took a detour through the bathroom first, I walked in to "Radioactive", Imagine Dragons. The other tech was listening with growing glee. "Was that on purpose? It would be SO FUNNY if that was on purpose." Yes, yes it was. The streaming service algorithm moved on, and my tech double-checked that I was okay with that. Perhaps he didn't see a link between Imagine Dragons and Lorde, but some accident of time and space set them together on that decade-old radio station that I listened to while driving between home, Virtual Hammer, and back again. And then again on this proprietary mix that we all merely rent.

We got there early to apply for financial aid. I had a mostly filled in sheet with some questions about some parts, and a letter of explanation about my general status. The person there and I vibed immediately, and I told her which field was unfillable in PDF. That took much shorter than I'd thought it might. She allowed as how some of the parts of the form were more important than others under certain circumstances.

We'd also left early to try and return the cat carrier (alas, the place was closed) and return the nasty mangled water bottle I'd been shipped by some whim of the semi-automatic system. Some person had looked at a water bottle that no longer could hold the stated amount of liquid as it was shrunk just exactly like a shrinky-dink, and no longer would accept the lid due to being bent out of shape, and had marked it OK to resell. Either that, or the heat conditions in there are about dishwasher level and shaped.

( Bits about the IV )

While I sat in the little imaging prep room, briefly more radioactive than a banana, Belovedest pursued the paperwork that I will need to turn in at my nearest Motor Vehicle Department to certify that my hip is hella fucked up, y0. Also tracked down the materials for the take-home urine test. Having taken one before, I requested two collection jugs, but neglected to specify the top hat. I'll have to figure out the optimal time for dropoff, and then work backwards from that.

The medical recliner in the imaging room had a heat function and a massage function.

In the scanner room, I noted with approval that this machine had all of its "HEY THESE ARE FUCKING LASERS, DON'T STARE" labels. *grim look at The Other Place* My friendly tech helped me get settled, and added that while I could breathe normally, I would need to remain absolutely still otherwise. The pillowcase trick for my arms Did Not Work, given my tits. They broke out the big velcro wrap. My tech used some of the self-cling wrap to put my feet together. It was surprisingly comfortable, as far as any immobilizing position can be comfortable to someone with the ADHD. There was a trees-and-sky image on the big room light, and a semi-abstract drawing inside the scanner tunnel. I spotted a seal balancing a ball, a swan, a teapot, and some butterflies.

The scan came out clearly, no need to re-do any parts of it because I'd remained sufficiently still throughout.

After the scan was over, my tech remembered that this room had an assistive device for getting people off the table. "So this is going to be partly you and partly me," he said, walking over what looked like a small pull-up bar dangling from the ceiling, moving smoothly in two dimensions on tracks. I grasped the bar, and before he could do anything else I was sitting up. "Or... all you!" he said, and brought me my glasses. I got my feet under me, popped back into the chair, and we grabbed my phone, watch, and water bottle before he wheeled me out to the snacks zone.

Belovedest and I were both ravenous by the time I got out. We detoured for burgers as soon as traffic let up enough to let us get back onto surface streets.

alexseanchai helped me find my pill boxes after I got home.

So now that the appointments are actually starting...

Somewhere in the 2-3 years range, I noticed my right hip being more squirrely than my left one. This coincided with getting my foot fidgeter. It also coincided with some of my numbers changing, because, I thought, of the foot fidgeter and also some other circumstances. (I do not care to discuss the circumstances in open entries, kthx. Nor the numbers.)

I got a hip x-ray, which showed a "lesion". I got an MRI, after about 4-5 months of fuckery in which the MRI people called me. Once. And didn't leave a message. Which I learned after complaining to my primary care that the MRI referral seemed to be taking for-fucking-ever.

I got the MRI at the end of May. I was told I'd get a referral. It took some doing to actually get the referral to go to someone who was accepting new patients.

I got a call from Fred Hutch (now including the artist formerly known as the Seattle Cancer Care Alliance) because there is some (currently undiagnosed) shit in my lower right abdomen. Specifically "a mass" that's slightly smaller than a small baseball and slightly larger than a large tennis ball. That was the first week of June. It was the "o hai how do you feel about having been referred to us, ok great you will get information and contacted by our schedulers Real Soon Now."

The schedulers failed to call, and failed to call, and failed to call. I tried leaving messages. This did not result in calls back. I sent a message to the person who had wrangled the referral going to the right place. No response.

My out-laws visited, which was fun.

I sent a message to my primary care, and brought it up in person when I saw her a few days later.

Within half an hour of walking out of the primary care appointment, I got a call from the new medical assistant saying that she'd got me an appointment for four days hence.

That was Monday. Monday morning, before I was awake, my phone got a call from Fred Hutch scheduling. I had an appointment before my appointment, to get some imaging in. I woke up somewhat later and saw first the text about the appointment.

After rescheduling it, we went in and had a halcyon afternoon of waiting around and filling out forms. I now have the Tumblr Color Theory Children's Hospital notebook to use as a paper journal.

My biopsy is tomorrow. I will be conscious but in no particular state to be concerned about anything. I'll be taking the bus up to Seattle, and once Belovedest has finished their Work Stuff and gotten out early, they'll pick me up.

Belovedest got Yellface an appointment on Tuesday the 6th, on short notice. Ordinarily Tuesdays are their WFH day, so they have some options to flex time on the not temporally bound things and work early or late, but of course this Tuesday morning they had an obligatory offsite-onsite (onsite-offsite?) item. (School visit, so on site at the school, off the library site.) Therefore they called me twice, first to take my phone off mute, second to wake me up to request the favor of my awake functionality and get Yellface dropped off at the vet. Which I did. She was isolated in the bathroom again, and not in favor of any of this. I knocked over her water bowl while attempting to stuff her in her carrier. So her carrier was damp, and she was damp and sorry for herself the whole way there.

She likes having human voices, even if she doesn't put much stock in them if they're coming from a device, so I had the radio on (https://989kpnw.com/ ) to keep her quiet if I could.

And the phone rang.

I am about to be in for a lot of frankly obnoxious appointments in the coming weeks? months? so I saw wisdom in not letting it go to voicemail. And lo and behold, it was someone from the place I'd been referred to, reaching out to get first contact with me. I conveyed that I was not actually in a place to talk about this, given that I was driving the cat to the vet, and I would probably be free about 11.

Yellface remained sorry for herself the rest of the way to the vet.

Eleven rolled around. I was back home, minus cat, phone in full view. I saw the voicemail pop up. Of course my phone hadn't made a peep. I tried to call back, and got silence instead of the sounds of dialing out. Motherfucker. I rebooted my phone.

I learned, the next day, that the callback number is technically the number for the scheduling team, and not the First Outreach person. And the routing goes perpetually to voicemail; the scheduling team passes along any messages for the outreach person when they get them. I spent the rest of the day in irritated ignorance of this fact, attempting to get through to a live person.

Yellface was released from the vet with a note and a 14 day prescription of antibiotic pills. After bacon grease the first two days was not to her liking, we have switched to butter, which is still no compensation for being made to eat a pill, but she does prefer butter as a high energy thing to eat when she's ravenous and some is left where she can get at it. (This is why the butter is not on the counter, but up in the dish cabinet.) I have therefore flipped the prescription lid to the side that doesn't need push-down-to-turn, and filled the other side with a convenient pat of butter, so we can butter the pills as needed.

(Wednesday, I got a voicemail from the outreach person again when my phone was still on DND; she called back fairly quickly after that and we talked a bit. I'll be getting a packet of information soonish, and then some contact from the scheduling team.)

Remember how my hip was acting up in December? Well, it's finally, as of this morning, after last night's hot bath and cyclobenzaprine, feeling better today. "Better" at the point when I woke up was also my hip muscles in SCREAMING PAIN but also the sort of pain that follows an extended period of things being Wrong. And the hip didn't feel Wrong anymore.

That was what I went to see the doctor for on Tuesday, the hip. (I was also supposed to have my next jar of Ritalin on Monday, but it didn't appear.) My very nice NP asked me to extend the leg forward while standing. Ahahahah. Then she asked me to make the figure 4 while lying down, by crossing my lame leg over the other one and bending at the knee sufficient to bring my heel up to my knee. Hahahah. My leg twitched, but I couldn't get it far up enough to cross over my other leg. (Left leg did just fine.) She sent me off with a four-page booklet on stretches and strengthening exercises, a verbal recommendation for physical therapy (I made distress-noises about the co-pays so she didn't follow it up with too much) and an x-ray referral.

I got Alex from an appointment after that, and took a breather at home.

Might as well get the x-ray done, right? So I hied me off to the more convenient location, found myself a suitably close parking space. Went to open the door.

Message to house chat: "I am at [location] for my x-ray but the driver's side door isn't letting me out. I petition for some windfall to fix this fucker
Climbing over seems like a non starter both with hip and steering wheel"

I set a timer to try and let the actuator cool off. Belovedest confirmed that they could use some of the money from the unexpected check from an insurance company to aid my car. I called the auto shop.

They could try to squeeze me in the next day, if the guy had any spare time. As I was describing the problem and the troubleshooting steps I'd taken, the guy on the phone gradually became aware that I was, in fact, locked inside my car. Instead of outside. He recommended that I come down immediately so they could extract me from the car by whatever means necessary. I advised Belovedest to come retrieve me from there.

I pulled in next to Belovedest's distinctive car and auto guys boiled out the door. Their electrical guy handed me out (the door had unlocked, perfectly and automatically, when I came to a stop and turned the thing off). Then I drove Belovedest home so they could start their meeting on time.

Yesterday, Wednesday, I called up the pharmacy and asked after the refill date of my fuckin' Ritalin. This had slipped from the 8th or whatever, to the 13th, and over the phone I was surprised and dismayed to hear -- the 20th. I demanded a pharmacist of the automated system.

The pharmacist said that first it had arrived earlier than the valid fill date (true, and slightly intentionally) and then they'd only had 30 of the indicated 60 pills. Since this is what it is, she said that they could fill me with 30, but I'd lose the other 30. Or I could wait until the 13th, but they might not get their whole shipment; they hadn't gotten any with the last shipment. Sensing my dismay, she added, "Or you could have your provider fax it over to a different pharmacy. One that has it." She named two places.

"Hold on, I'm finding it surprisingly difficult to hold more than one piece of information in my head at once," I said.
"I wonder why," she said in a dry tone that immediately cemented her as my favorite.

I left a message for the person covering for Dr. V.

My plan for when I got the car back included getting my hip x-rays.

Today, I got a message that they'd faxed it over, and I should check with the pharmacy. Then I got the message from Belovedest, that the car was done and I should make ready to go pick it up. A hasty morning routine ensued.

Hip screaming and all, I limped to the car and operated Belovedest's Pokemon Go as we headed for the auto shop. After I got my key back, I headed to the grocery store with the pharmacy. It's pretty big inside, with nicely wide aisles, none of the terrible end caps that make our local version hell to navigate on wheels.

The pharmacist confirmed that all was in order, and I had but to wait 15-20 minutes and I'd be ready. I wandered the store. Even before my watch timer went off, I got the text saying I was ready. I was glad of the wheels as I waited in line; the person in front of me had an extensive consult. But finally I was free, my prescription in hand.

I contemplated the x-ray. However, the referral is good for a year, and my hip just went back to normal. My cunning plan, therefore, is to attempt to wait for my hip to do that yet again and hie me straight off to imaging to try and get whatever TF is going on there on actual record. So I didn't head there after all.

I detoured through See's with my gift card on the way home. Balancing the great good fortune of last time, this time I did not get a sample. And that's okay.