Today I had to explain to the oncologist of the week that actually, I don't have all that coherent a reference point for "my lungs are great".

One of the stories of my childhood was how I wouldn't stop coughing until my dad took me outside and the cold air managed to calm my lungs down.

I had undiagnosed asthma, allergies, and deviated septum throughout my youth. I started getting the allergies treated in my 20s, the asthma treated in my late 30s, and the deviated septum was only treated not quite two years ago.

Since then, my lungs have been pretty great!

I'm pretty confident that based on the description of how the immunotherapy is known to Annoy lungs, I could probably spot it, especially because it tends to cause coughing. But, uh. Mild shortness of breath? Hardly even registers.

(Today was blood tests, oncologist, and then immunotherapy infusion. I see them-all again in another 6 weeks. This is a much more comfortable pace than chemotherapy, and the chemotherapy was unpleasant to boot.)


[Edit: we'd started immunotherapy at the same time as chemotherapy, and it's been going every 6 weeks since chemo ended; this was just a new discussion since I've been occasionally dizzy.]

Previously: line up AM pills on the left side of the desk, PM pills on the right side, and Both pills in the middle (to be added to boxes after AM pills, and then put on the PM side). This requires extra clearing off of desk space to make sure they all fit. (Bottles that have already been loaded in go back into the "Come With Me If You Want to Live" drawer, either right-side-up if I don't need to do anything else, upside-down in the fabric organizer that the primary stack of filled boxes will go in if they need a refill soon, and upside-down in that place with a little plastic dot inside them if I ran out midway; a set of matching plastic dots mark the compartments where there aren't that pill.)

New procedure: AM pills go in the pink bins on-or-near the desk, PM pills go in the blue (teal) bins, and Both Times pills go in the white bins and migrate to Blue after they've been added to AM.

The colored plastic dots come from Microlet lancet tip protectors. (Used lancets go in my mini Sharps jar, which started life as a Costco Loratadine jar and then got a red paint job on the lid and bottom using some non-preferred nail polish, and a label saying SHARPS on the side, implying Please Don't Fill Above This Line. I dump it into the big sharps bin in the bathroom.)

This weekend featured some Bodily Fail, over which I am still Disgruntled and Apologetic. Fucking cancer. Fucking cancer treatments.


Book status: finished with The Curse of Chalion a day before the audiobook was going to get whisked back to the library, and into Paladin of Souls. (We will probably not do The Hallowed Hunt, and the next person to breathlessly suggest that we do any Sharing Knife gets The Cut Direct. However: Penric, my beloved.)

In other book news, I waxed enthusiastic about All The Warnings on Cyteen to alexseanchai, concluding "But it's great about Growing Up Autistic Under Surveillance" although modern understanding of neurotypes and Azi vs Cit psychology suggests that uh, starting a kid off via 100% Tape-based learning would Probably Not result in Autism. "Oh, they're not sensitive to their discussion, are you Florian" "No, sera" (paraphrase of Ari I and Florian I) hits Significantly Different in context of Autism "Speaks", those morally bankrupt allistic and about-us-without-us fuckers.


Relevant to The Locked Tomb, Target's Halloween shit is coming out, and they have a skull-topped decorative bottle, some blatantly 3rd House skulls that are bedazzled to fuck and back, and a "Finally, some peace and quiet" coffin shaped motto board with a skull that could be painted into a number of different House skulls.

*shakes someone else's doctor upside-down until pills fall out their pockets*

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.

Apparently I should be able to watch the Shaun the Sheep series, but not the movie, and especially not Chicken Run. (My pet peeve, you see, is chickens with people teeth.)


I called the pharmacy about two things that had confused me, and managed to luck into talking to perhaps the best person possible.

"And incidentally, since I'm mentioning it to everyone when the subject comes up, the OneTouch Verio Flex isn't fit for purpose; you can't even specify whether a reading is before or after a meal without using the app. And it doesn't even say so on the box!"

An expression of mild alarm and sympathy, and some shuffling sounds. "You're right!"

We had a brief discussion about how many elderly people aren't necessarily comfortable with technology and might not have smartphones (initiated by her; I agreed heartily and mentioned that I was au fait with the tech and appalled at the privacy implications; she'd heard my birthday first thing so I didn't feel the need to give my age again). She asked if I happened to be familiar with another model; alas, I wasn't.

"Thank you for telling me, I'm the one who does the ordering, I'm just gonna stop o-- I'm gonna talk with my pharmacist."



wohali linked the Space Age Bachelor Pad Music episode of The Atomic Age Cocktail Party; listening to "Song of the Barefoot Contessa" gave me influences from Ravel's Bolero, the Dance of the Sugar Plum Fairies, and the vocal portion of the theme from Star Trek: TOS. I enjoyed the program but it is definitely NPR house style with lengthly blurbs instead of minimalist DJ style.

Good appointment with Dr. Chemdrips. I'm done with chemo for the foreseeable future. Immunotherapy next. I've been ordered to celebrate.

ding ding ding


pretty much everything went ok; ice packs were iffy but I got real ice and napped

got takeout on the way home but not Taco Bell despite the conceptual pun

going to fall over now

Alas, Costco seems to be out of the very good jarred butter chicken sauce.

Yellface has been allowing Alex to touch her face, and right now she seems to be soliciting cheek rubs.

My week got long:

( Read more... )

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.

Arrived early and without incident.

Got my physical therapy done while gowned in the surgical waiting area, and learned how to operate the angle controls on the back of the bed while I was at it.

The physical therapy uncovered that my IV would occasionally emit a droplet of pink-tinged saline. After the second time it did that, the IV nurse unscrewed the screw-on thing, wiped everything down, and replaced it with a new one, and put new film over the thing. The new one did not leak.

Made sure that all the medical professionals in the room knew about my allergy to the cut edges of transparent dressings.

I have a brand new port, and it is secured (the first one was not). It's the same kind, so I have another of the grey rubber bracelets and I won't have to change the information on my custom red bracelet.

I got Bizarre Love Triangle as my first song, and the playlist was okay but I didn't wind up singing along.

I was awake for most of it, and felt basically nothing except for how the table does kind of squash your butt. I was coherent by the time I got to the recovery room.

They did not cut the IV 3000 dressing, but I'm getting an itch at the corner anyway, so I may just be allergic to the whole damn thing. I have put on some benadryl cream to extend the amount of time I can wear it before I rip it off myself while yelling.

I'm supposed to keep it covered and dry until my infusion tomorrow, and I think we can manage at least part of that.