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azurelunatic: Vivid pink Alaskan wild rose. (Default)
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.]
azurelunatic: Seated baby in incubator shell with electrodes.  (Cyteen)
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 [personal profile] 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.
azurelunatic: Rear view of mens' underwear with a flaming skull in the middle of the butt, captioned "SKULLBUTT THE TORMENTOR" (SKULLBUTT THE TORMENTOR)
Today was my next scheduled test, another PET CT scan to keep tabs on how the cancer is doing in its turn-tail-and-run situation. Originally Belovedest had requested today off in order to drive me, on account of the tube is a very small space and I do not like those, no, not at all.

Their work-from-home day is Tuesday.
Wednesday was Juneteenth, which Washington State recognizes as a holiday now.
Today was my scan, for which I need to not exercise for the preceding 24 hours and fast for the last 6 of those (for optimal radioactive glucose uptake).

I woke up to Roomba-pet chewing on the speaker wires in the bedroom. I marched out to grumble at Belovedest over the unclosed door, but poked my head in the living room and did not see the expected Lorge Draggon lounging in the middle of the floor. Instead they were bundled up on the couch, and there were two lines on the test stick. Motherfucking god damn.

Belovedest tried to say something Brave about claustrophobia, and meds related thereto, and not feeling All that bad.

"I am not," I said, "bringing a Covid patient in to the cancer center." And that was that.

Read more... )
azurelunatic: Vivid pink Alaskan wild rose. (Default)
April 1: I was basically on Tumblr, rickrolling and booping.

April 2: Achievement unlocked: first infusion in Short Duration (1 hour or less of active time). I was early, which hopefully helped everyone get out of there on time or early.

April 3: Food poisoning, probably. Belovedest went to the store and got various clear liquids for everyone who needed clear liquids today.

Lucky me

Feb. 24th, 2024 12:31 am
azurelunatic: Vivid pink Alaskan wild rose. (Default)
I'm apparently one of the people who reacts to Zometa with flu-like aches and poor temperature regulation. I accordingly canceled Friday.

:)

Feb. 14th, 2024 12:31 am
azurelunatic: A spray of $CELEBRATORY_FIZZY_BEVERAGE from a beribboned bottle caught in the moment just after the cork pops. (bubbly)
Good appointment with Dr. Chemdrips. I'm done with chemo for the foreseeable future. Immunotherapy next. I've been ordered to celebrate.

Red folders

Feb. 5th, 2024 09:26 pm
azurelunatic: Vivid pink Alaskan wild rose. (Default)
Today's accountability project from therapy was shame-cleaning. Therapist asked how the paper sorting thing from our last session was going along. Instead of paper sorting, I'd pill bottle sorted and labeled.

You could argue that for the first however long post-therapy this afternoon I worked on pill boxes instead of papers, but I think I've fairly comprehensively put enough time into papers by this point in the evening that I can say I worked on papers. Even though the pill boxes needed doing too.

I have red folders labeled 2022, 2023, and 2024, as well as Scrap and a blank red label. I have a blue folder labeled Chemo 2023.

The dated folders are getting miscellaneous medical stuff, mostly prescription. The scrap folder is going to grow once I start sorting the other folders. Even if I'm keeping all of the "you got this medication on this date and your insurance saved you this much" slips, I certainly don't have to keep all of the medication information sheets. My general rule for those is I keep one copy of the medication information sheet per year that I am taking it in, or perhaps an additional one if it's updated at some point during the year. At some point this will get condensed, but right now I'm just trying to make sense of the chaos.

Today I prepared boba for bubble tea, and it is being delicious. I am having it with chai spiced milk tea.

In chemo news, the cold cap is working insofar as I am getting a fuzz of new hair in the sparse space on top of my head that I can only really perceive when I hold the whole small chunk up and see how it stops being there after about two centimeters.

When I get to the bottom of this bin, I may start doing an internal sort of the red folders. It's also possible that bedtime may hit first.
azurelunatic: Skeleton: close-up of the right hip area, medical diagram. (hip)
Taped to the inside of the glass door of the infusion suite, curtain stored behind the chair that the elusive woods gremlin was sitting in, Aranet 4 monitor on the adjustable height C shaped medical table.

Feedback from medical team, almost unanimous: pleasure at me being able to communicate my needs so clearly.

obnoxious formatting )

last chemo

Jan. 30th, 2024 11:43 pm
azurelunatic: Vivid pink Alaskan wild rose. (Default)
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
azurelunatic: Vivid pink Alaskan wild rose. (Default)
My eyebrows are ghosts of their former selves, and I'm debating whether or not to tweeze some of the hairs that are outside even the generous lines of where I want my eyebrows to be.

My eyelashes look like I was interrupted in the act of putting on fake ones, with a few clumps here and there.

So yesterday when we went out for errands, I put on the dollar store magnetic eyelashes that I'd bought for just such an occasion.

You put on at least two layers of the magnetic eyeliner. Then, while it's still sticky, you put on the eyelashes. The result being that the eyelashes are both slightly stuck with the tackiness and continue to be stuck with the magnets.

I am not great at putting on eyeliner unless the applicator is made to help compensate for my shortcomings. This applicator is very much not. So I had to take some alcohol wipes to the situation to erase where I'd blinked and gotten quite a lot of eyeliner well above where it should have been, and the place where I'd sort of made a vertical line with no good reason to have it there.

But the eyelashes held all through errands, though I did feel the little rectangular magnet on one of my eyes because I'd placed it imperfectly. Belovedest said that if you didn't know what you were looking for, you probably couldn't tell. Also the dramatic eyeliner rather distracts from the eyelashes. If we were going somewhere that we wouldn't be wearing masks, I'd have worn lipstick. Normally my eyebrows are loud enough to shout down nearly everything else on my face, but I'm considering whether it's time to break out the temporary eyebrow tattoos to compensate.
azurelunatic: A crocheted uterus with ancillary parts, including internal clitoral structure. (Uterus in Retrograde)
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.
azurelunatic: Vivid pink Alaskan wild rose. (Default)
... is a pure delight, and I have additionally sent my social worker a picture of the dog tag I have dangling through the biohazard necklace I wear during chemo weeks. The tag has a medical alert symbol and CHEMOTHERAPY on the one side, and a notice that sometimes chemo and one of my other conditions could interact in a way that could make me look drunk, that this is in fact a medical emergency, and the correct thing to do is offer me sugar and call 911.

My next chemo is on the 30th. In the interim, I need to get two medical systems talking to each other, hopefully without me having to interface all that much.

Port!

Jan. 3rd, 2024 03:53 pm
azurelunatic: Vivid pink Alaskan wild rose. (Default)
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.
azurelunatic: Vivid pink Alaskan wild rose. (Default)
So yeah, 2023 has been the year of My Fucking Hip.

I'm in so much less pain than last year, omg.

I spent this afternoon compiling several hundred pages of Ask A Manager comments so I can read through the entire My New Job Is A Nightmare Built On A Hellmouth saga. (Hellmouth has been safely in a new job for a while now.) Purely for my own entertainment.

I have an appointment to fix my port on the 3rd, and my next chemo on the 4th. Last chemo is near the end of January. Then it's immunotherapy and some other things. I should ask Dr. Chemdrips some more questions about the osteoporosis drug he's recommending, since I have the Dad's Family bones, not Mama's.

The anemia is obnoxious and a limiting factor. I have more peripheral neuropathy after this round, including phantom toenail pressure and the sensation that I have been describing as ow ). Which will unerringly get me to chug a painkiller in the middle of whatever the F I happen to be doing at the time.

At least the buzzing sensation in my hands has receded?

Belovedest and I have moved on to the audiobook of Harrow the Ninth, and I am doing my best to be enlightening without too many actual spoilers. Other than the ones that they'll have picked up from my various enthusiasms about the series. Such as the discussion of whether the Locked Tomb's version of Mr. Musk is actually less of an asshole than John. (I'm choosing Mr. Musk by name because he's a billionaire spaceship guy, and also an asshole.)

Now that the fireworks have mostly stopped, Yellface has come out from behind the dragon-sized chair and has started yelling at us about bedtime.
azurelunatic: Vivid pink Alaskan wild rose. (Default)
I am now in possession of the official advice from FHCC on exercise at the hematocrit percentage where I am. But going slowly through my physical therapy exercises (most of them are horizontal in any event) and walking are fine as long as I can tolerate them.

We did a little shopping after Friday's appointment(s). We finished up tonight. I was aching in random places in addition to the stomach-adjacent ones. Speaking of which, Belovedest has been instructed to check in with me about which of my meds I've taken recently if I complain of stomach-adjacent aches.

We were at a loss for ideas about dinner earlier, but I observed that we'd found some butter chicken sauce at Costco, and I walked Belovedest through doing the setup.

There's a little left over, it doesn't have as much of one of the more bitter spices that butter chicken sauce usually has, and it was delicious.

I have errands for Monday, but I may spend much of Sunday absolutely flat except for the guard cat who may be summoned by my warmth.
azurelunatic: Vivid pink Alaskan wild rose. (Default)
The chemo session notes were approximately "patient tolerated chemo well."

TUESDAY WAS NOT AN UNEVENTFUL CHEMO SESSION.

At least I would have expected there to be a note about the IV being obstructed constantly.

I have an appointment with normal radiology for yet another fucking chest x-ray, so they can refer me along to interventional radiology. I have composed a message to Dr. Chemdrips' team about how Tuesday actually went.

Chemo #4

Dec. 13th, 2023 01:10 am
azurelunatic: Operation 'This will most likely end badly' is a go. (end badly)
moderate medical shitshow )

* Good: told my nurse explicitly that I didn't care about the position of the curtain, except people keep closing the curtain in the door for privacy and leaving the door partly open.
* Even better: thought to shove the curtain all the way back behind the guest chair (containing protective draggon) which took care of it pretty comprehensively when combined with frequent calls of "door!"
* Mixed: Aranet 4 said carbon dioxide PPM was in the 700s, until some building curfew that was not sufficiently overridden put it into the 1300s.
* They'll file a ticket: the big blue and silver door access button inside that bathroom failed to open the door at least 2 times. It did make clicks, so the problem wasn't me failing to push particularly well (which sometimes I do, but if it did that it needs fixed)
azurelunatic: "enjoy Cock-Cola" (Cock-Cola)
It has been a grilled cheese kind of weekend.

Yesterday we were almost out of bread, so I carefully limited the number of slices I had so I'd have a few left for lunch, and requested that Belovedest get more sourdough bread, and more small tomatoes, on the way home.

I thought of asking about cheese, but I was almost sure that there was another bag of shredded cheddar in the bottom drawer, so I refrained. No need to overstock cheese just because I was feeling insecure.

And thereby a small Saga ensued. )
azurelunatic: "PIE DOESN'T HAVE TENTACLES!"  (wtf)
you'll never guess what happened overnight

WTF

Nov. 24th, 2023 01:34 pm
azurelunatic: Hinky: adj: pure evil fuckery afoot. Syn.: suspicious (pure evil fuckery afoot)
LOOKS LIKE MY PORT FLIPPED, BOYS

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