A combination of 1 low-effort thing: the 5 cards, impending chemotherapy, and finding that almost all the communication cards I saw on Etsy were much too simple for my specific needs, started me down the rabbit hole of making my own deck.

I figured that someone would probably ask me how I was doing, and I should have a card naming some of my likely emotions. I pondered. I brainstormed. I ... ran out of good ideas and started adding in-jokes.

I feel...

pleased	sad
complicated	scared
hopeful	weird
Existential dread	Stared too long into the grouse

Card 38

A long time ago, sithjawa and I had a conversation about a magazine clipping Dad sent me. If you stare too long into the grouse... (Longer ago than that, but, you know, sometimes we don't save our chat logs.) Deep abyss is deep. Sharp grouse is sharp.

So the next two cards in my deck...

currently personal use only and if I ever want to sell it I'll have to buy licensing rights to one of the ideal images

[Full card image of large, aggressive capercaillie, staring right into the camera. His eyebrows are red, tail spread, beak open and ready to start pecking. Think a smallish black turkey, but super angry.]
Card 39

[the same image, smaller]
The capercaillie is a large, aggressive bird in the grouse family. This capercaillie is Not Amused.
Card 40

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

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 )

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.

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.

So, lost in the minutia that I didn't mention of Baby's First Chemo, was the Needle-go-'Round when they did my blood draw. I want to stress that I personally didn't take medical trauma from this one, because my phlebotomist was aware that it was my first time, she explained everything, and I am resistant to needle-related trauma in a medical context because of some elements of my personal history (former frequent plasma donor, O+, with trick veins and a variable supply of plasma phlebotomists).

( Yeah, needles. )

"I bet that took about the same amount of time as last time," I said when I came out to Belovedest, and collected an additional compliment on my hat.


After that we went and got some images for Dr. Skelebones. Blood test results started to ping in. We saw Dr. Bitsblobs, who said that yeah, my red blood cell entire situation was going to suck for a while, and iron supplements wouldn't necessarily solve the problem. Since marrow is a fast-dividing place, natch. And wow, I had a lot of hair left despite the visible thinning on top and the new short cut; typically it's "all gone" by this time. I mentioned that the control site is significantly gone. Good to know that the cold cap, despite being expensive, is helping.

We had some time to wait between that appointment and the infusion. I played gems a lot. Belovedest retrieved the three chemo bags. (Bag 1: the cold cap gear. Bag 2: miscellaneous gear. Bag 3: a cold bag with mitts, socks, and specially shaped ice packs to protect my poor peripheral nerves. 3 sets each.)

The blood-smell of one of the pre-medications they gave me was kind of like yuzu-oatmeal-cookie macaron, which was weird. I called it citrus-oatmeal at first, but that wasn't specific enough; I went to orange, but that was wrong too; I finally landed at yuzu, because it was bitter; and then I happen to recall an oatmeal cookie flavored macaron and that was even closer to the starchy component of the smell. My chemo nurse was fascinated.

I think the programming of the cold cap chiller machine was Somewhat Off, because I could swear that they are capable of attending to a 3 hour infusion, and I shouldn't have had to remain in post-infusion mode for another 2 hours. It cut out finally when I ran to the bathroom (again) on account of my bladder has Questions about the total amount of liquid getting into my system over the course of those few hours. But by that time I was on to the final drug of the chemo cocktail, and the hat was still substantially frozen when I took it off.

The neck/chin brace did help with the cold cap strap attempting to throttle me, but I could probably use some clever, 3-d printed part that hooks exactly correctly to further help. It worked for about an hour, and I learned some lessons about the timing. Eventually Belovedest registered the mask strap that goes around the back of my head, so I didn't have to rely on my ears or a special glasses arrangement to wear the mask.

My social worker did stop in to see me in costume. Dulcinea from the Locked Tomb. Pale seafoam green frilly nightgown as a shirt, floofy white skirt made from salvaged panels of curtain lining, exceptionally frivolous hat (made some years back, in my California days), white lace parasol that sometimes opens on its own, oatmeal colored sweater. The tacky novels are on my phone. My phone is on a sticky telescoping grabber-stick that I can easily hold in my ice-mitted hand. The other hand has a pencil-length stylus, and an EazyHold strap (small hole kind, not Universal Cuff big hole kind) to secure it around the other mitt. I'd sworn that I wasn't going to engage with the Seventh House, but after the diagnosis came back I figured oh what the goddamn fuck I might as well be Dulcie. (Short hair, and my hair does curl when it's that short, and all I have to do is encourage it slightly. I could also have long curls but they will attempt to stick together, so I usually kept it braided.) For actual Halloween, I had red lipstick and put some on my face to simulate her blood situation.

Dr. Skelebones came through on her way home, and said that while I could still walk and swim, my days of trollhugging large men are pretty much over. As are my vigorous dancing days.
Balls.
... Ed Balls.

We're home now, I'm tired, I have my meds to deal with the side effects and also the meds to deal with the knock-on side effects caused by the side effects meds, and I will be falling over into bed shortly.

After two weeks of minimal hair loss, I started getting significant fallout. It accelerated rapidly enough that in one afternoon nap I went from mostly fine to needing to cut out a significant tangle with hair that had already fallen out knotted in with the rest. At which point I sighed mightily, grabbed some hair elastics, and did The Chop.

Which is cute as hell, incidentally, at least temporarily. I'm starting to be able to see a little too much of the surface of my head, though.

I regret to inform everyone that this sort of Hair Shenanigan means that sharp-ended hair will continue to fall into your collar while you are out minding your own business in Home Depot and it will suck until you track down the specific hairs and remove them, at which point they will promptly be replaced with another three.

The cold cap is very effective, though, despite all this! The Control Site (as I have termed the other major location, which did not get cryotherapy) has lost what I think is like 75% of its hair.

In accordance with the prophecy, the now 24+ hours of no drain access at home has coincided with my chemo recovery week.

Monday, not quite 8 am:
☎️🛎️ "BTW, plumbing starts tomorrow!" 🙃

Monday, late evening:
I book a hotel for Wednesday and Thursday nights, on the assumption that the sewer outage probably won't start until 3pm

Tuesday, not quite 8:
Small orange digger in our front yard

Tuesday, noonish:
We depart for my chemo

Tuesday, fiveish:
The 72 hour clock for my infused side effects meds begins

Tuesday, 10pm:
We depart the infusion center. I have epic dry eye and am fighting sleep badly enough to not track my audiobook super well.

Wednesday, 7:30 am:
☎️🛎️ "Sewer will be out at 10a, if that's OK! Then the inspector comes tomorrow morning!"
My beloved partner, half awake and stunned: "Fine..."
Me: "FUCK."

alexseanchai and I scramble to pack.

8:30:
We scram out the door with Belovedest, because the library has bathrooms.

Midmorning, I'm feeling up to driving. I call the hotel.

By 11:30, we're checking in.

(Steph, meanwhile, prepares to fuck off to River Thorn Cottage after their work call.)

Okay. 10 AM Wednesday means we should have sewer back by 10 AM Thursday, right?

Hôtelier: Just let us know ASAP if you won't need that second night!

4:30 or so: Belovedest gets a voicemail from the plumbers. The inspector will require an additional $500 of work/parts for a thing. Belovedest is unreachable due to a program.

5-ish: 24 elapsed of 72 hours of the side effects meds clock. I have been taking the breakthrough meds since midnight, but the few symptoms are not bad.

6pm: I return to the library to retrieve Belovedest.

6:15pm: nobody picks up at the plumbers'. No voicemail either.

Thursday morning, 10am.
No word from the plumbers.

Noon (standard checkout time): no word from plumbers.

And here we are.

Saw Dr. Bitsblobs yesterday. Not sure I actually like him that much, because he did not strike me as having a strong attention to detail. Saw dentist on Monday, who wanted me to get some work done before chemo. Dr. Bitsblobs wants to know why she wants me to get it done NOW before he will authorize it. (The clinic will not even schedule me before they have the signed form.) I also am unsure if I have the meds that I'll need for the side effects. He could have sent them to the pharmacy! I could have lost them! It's entirely plausible that I put them somewhere "safe". But they're not in MyChart. The palliative care doctor looked for them and doesn't even see what they're supposed to be.

Anyhow, I'm off to get a microchip or whatever.

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.