Chemo Cold Update
My apartment is a very comfortable 23C (73ish F), but I'm still wearing a sweater and a toque, and have three warm fluffy blankets on. Chemo cold sensitivity is extremely real
My apartment is a very comfortable 23C (73ish F), but I'm still wearing a sweater and a toque, and have three warm fluffy blankets on. Chemo cold sensitivity is extremely real
My head is very itchy, which is how I know I'll have very little hair by end of week
I just kneeded some bread dough (Thomasin was off doing Important Cat Stuff aka yelling at songbirds) and that much effort genuinely pushed me past my limit
James Petrosky:I'm having a go at making my own bread again. I enjoy working with dough a lot. This is the third consecutive time and I'm pretty happy about it.
Also this is my recipe, it's fantastic (as named) for sandwiches, but also as toast with eggs and as garlic bread, which covers 100% of my needs.
https://www.browneyedbaker.com/american-sandwich-bread/
At this rate there will be no hair on my head by Decemberween (if not sooner)
Can't tell what's happening with head top hair and body hair yet, but the beard is not going to survive too many weeks
James Petrosky:I'm sad about this, but you can't wear a mask properly with as much beard as I currently have. And my immune system is already as bad as it's ever been, so it's just as well
Something about recovering from a hypomanic episode that I can't remember being talked about is how it's hard to trust yourself again after.
I was making my plans for today over breakfast, and got excited that I think I'm going to finally make it to the end of a long chore chain today. And I had to stop and reflect whether this was a healthy, normal excitement, remnant mania (chores, even the completion of, don't usually cause me joy), or normal excitement retriggering an episode (no idea if this is possible, but I would take great pains to minimize risk).
This morning, based on the speed of my thoughts and the fact I've seen everything I've started through to the end, I'm confident it was normal and healthy. But I have to second guess every elevated state for at least another week because, for me, the real risk comes from having an episode and not knowing it's happening, damage control has so far been simple for me if I'm able to reflect, but that requires a tremendous amount of vigilance.
And it's really hard to enjoy moments of genuine excitement if you have to constantly second guess your own mental state.
James Petrosky:The task I'm going to get to is eliminating a box I've kept on the floor since April 2020 as overflow pantry storage. My apartment is shit and has no storage, so this has been the only option until now. Today I will
-sort through some more records, freeing up some living room shelf space -sort through stem ware to see if anything is worth saving or giving away, placing remainder in opened up space in living room -move food into space where stemware was -possibly rearrange kitchen gadgets to fit in remaining food -fill entire trunk of car with two weeks of donations
Is it realistically that much? No, but I no longer have a lot of energy so it's pretty ambitious for me
James Petrosky:Moving anything in this places cascades down several other levels of bullshit, but getting rid of a perminant floor clutter is a major victory that makes all future tasks have fewer cascades. Especially because everything in today's cascade is either getting a real home or getting donated.
Halls are popular this time of year, but medically they're no different than any other hard candy. So I've been enjoying a selection of fruit candy and Werthers, which taste a lot better
James Petrosky:The menthol can be soothing and bring you comfort if you like that sort of thing, but it doesn't actually treat any symptoms in any way. So if it brings you comfort, that's an excellent reason to pick one candy over another. I detest the sensation, so gimme that fruit.
Had to make a day trip to Sudbury, so I visited the Nickel.
The little dance I found myself part way through in the flour aisle is all the proof I need my mental state remains unstill
James Petrosky:And this is the challenge with hypomania for me - is so fucking fun much of the time. I love being this free and active and confident. But it would take years more of therapy to get there regularly. Which was the plan before all this.
Just ran into the limits of my lung capacity singing a song to annoy Thomasin (I don't like Muse, but she fucking hates Muse, so it's worth it)
James Petrosky:The song was Starlight, covered by a guy who hates Muse in reality as much as I imagine Thomasin to, but she generally likes when I sing their other songs to or around her, so it's gotta be the Muse she hates
It's really, really easy to understand why depression is so terrible. Some people are still unrepentant swans about it, but they're dumb and wrong and should be punted into low earth orbit.
It's a lot harder to explain why mania or hypomania are also the fucking worst, in their own grotesque and magical way. Because every creative project I've ever done (lots of 3D prints, the LED crystal glass stuff, ones I've yet to complete like a cat laser turret) was born of hypomania. And a lot of frankly unimpressive and boring ones, too, but their boring and I'm hypomanic so I actually can't make myself think about them. Art critics of all media love to retroactively diagnose someone as bipolar, and use that to explain their output. And who the fuck wouldn't want any favourable comparison to van Gogh, even if it's in the form if an extremely serious mood disorder.
I won't lie, hypomania is the most fun I can possibly have. Because level James or depressed James can only enjoy one or two pleasurable activities at once (eating and watching a movie, for example). But hypomanic James easily gets to, and maintains, five (movie, music, food, cat videos, paper stage designing of 3D print project) without feeling like I'm missing out on anything from any of them. Genuinely, the only way to top that is to add drugs, which I know magnifies the feeling further, but generally don't do because I know the risk factors and apparently statistics have the power to get through to me.
Hypomania looks a lot less attractive from where I sit right now. The party ended days ago. The creativity, joy and way the colours of those lights looked has all returned to a tedious normal, one I'll forget is as mundane as a mallard in time, but a normal that almost hurts for now. I don't sleep much while hypomanic. I don't need to. I can silence my racing thoughts for three hours a night and that's plenty. I still can't sleep, and am really feeling that lack right now, after another night of insomnia and three hours. I also mean the party ended in a more literal way, because my manic ass starts cleaning projects, and would finishs many, but whatever is left over at the point it all crashes down is for my level, exhausted, self to deal with.
I'm so tired. I'm not looking for pharmaceutical, natural, or any sort of supplement remidy here. Between the bipolar disorder, lithium, cancer, chemotherapy, and high blood pressure I simply won't touch anything not okayed by my oncologist, my kidneys and my liver are both in bad shape and I cannot risk further damage.
But I'll accept mental tricks for falling, and especially staying, asleep. Apparently there's some overlap in things that work for jetlag and things that work for bipolar insomnia (preliminary research, not the exact insomnia problem I'm dealing with, but it's something). And no, getting extremely high doesn't seem to help, I'm just uncomfortably high and awake the same amount of time (this does help for regular sleep, though, so it wasn't a bad thought).
James Petrosky:Tldr enjoy my hypomanic rant about how hypomania gooses and swans at the same time and how I'd really rather just duck.
James Petrosky:Geese are exciting, fun and delightful. Swans are dicks, jerks and bad. Ducks are just ducks, ducking around, doing duck stuff (but not that duck stuff sicko this is a wholsom waterfowl analogy)
Justine Wiesinger:Things that help jet lag/sleep during the day in my experience: Maintaining a very regular eating schedule Eating lots of fruits and veggies Walking as much as possible Resisting daytime naps by getting involved in other things Things that might help at night: Peppermint tea before bed Wearing a sleep mask Ear plugs if needed Telling yourself a story as you go to sleep that does not involve yourself in any way Visualizing something endless, like releasing a rabbit and watching it run and run over the terrain Setting an alarm for the morning and NEVER looking at a clock during sleeping hours Rejecting stressful things your brain wants to dwell on by reminding yourself that you don't need to problem solve at 3 AM I know all of these might not be possible with your illness but I am throwing them out because I don't know what is or is not accessible to you at any moment, so throw out whatever doesn't suit. Most of my strategies are for fighting anxiety so they might not be applicable to other situations. I have also heard "no screens for an hour before bed" but never followed this
Brennan Moline:Growing up with a bipolar parent, I saw how destructive and painful the mania was -- as much so as the depression. I remember a depressed former friend saying she envied bipolar people because at least they had 'highs' and I had to restrain my anger as I explained those highs were just as painful as depression's 'lows'. I wish I had advice for insomnia -- I delt with a rough bout of it that only got better after a really bad mental crash, but that doesn't help. I hope you feel ducky soon.
James Petrosky:Brennan Moline, when I'm depressed, I wish I had an episode incoming to get me doing stuff again. Sure could use the energy to clean the apartment, it hasn't happened in a month or so at that point. Right now I could go for a week of depression sleep. But really we all just want to be silly ducks, puttering around the pond, having good but uneventful duck days.
Colds are way, way worse than I remember
I've been manic for at least a week now and have been having "twitter thoughts", ideas so profoundly stupid I need to yell them into the void, several times a day. Is that what microblogging is for? Is everyone on it manic at all times?
I am:
All at the same time. Which obviously means IT'S HYPOMANIA TIME AGAIN
James Petrosky:I'm fine, there's no danger. Once I know it's happening it's pretty easy to counteract the impulses. I started sometime in the last week or so, it's hard to tell when I'm stuck in bed on chemo or stuck in my apartment on hydration, and will probably come to an end around the time I return to the chemo suite next Tuesday.
James Petrosky:It also explains why I've been having such a hard time sleeping, at least that's not a new chemo side effect
If there's an afterlife and I don't get to be a Doctor Who style immortal time traveler, hanging out with all eras of life on earth (and across the cosmos) I'll feel pretty ripped off
James Petrosky:Don't promise paradise and fail to deliver the stegasaurus
Gang, for the first time since the PICC was installed on September 14, 2022, I was able to have a proper shower without plastic wrapping my arm.
It was very nice.
Wanna see the line they put in my neck?
Gena Radcliffe: I have to admit that when I had the dialysis port in my chest I was fascinated by it.
James Petrosky: Gena Radcliffe they're so cool, all the benefits of my old PICC with many fewer of the cat risks
Home IV selfies!
James Petrosky: Hydration is something a lot of chemo patients get after treatment. We're hoping it helps me bounce back a bit faster, and especially hoping it takes some of the stress off my kidneys, because something is up with those fuckers and I don't like it.
Nancy Fallat: Wow, healthcare at home. That is so convenient. Glad you are getting lots of hydration. Does it show on tests that something is going on with your kidneys or is it something you feel?
James Petrosky: Nancy Fallat there was something in the blood test my doctor didn't like, my blood pressure was very high (150+/110+ for at least a few days), and I feel kidney soreness. I have an ultrasound next week.
Mica Richard: Your beard has reached Greek philosopher levels!
James Petrosky: Mica Richard fantastic! I also have terrible ideas about how the natural world works
Steph Nelson: You look cute
James Petrosky: Steph Nelson I used to favour a clean cut look, wish I'd gone for something scruffier earlier. Imagine if I looked like this and hung around with a schnauzer (or Bessie the scruffy poodle in all my profile pics) Steph Nelson: James Petrosky scruff buddies!! ❤️
Gillian Bradford: That beard is impressive.
I've always been a collector of things, and my CD collection, long paired down from its largest extent, is the most precious to me.
I just went through it, deciding what was worth one last listen* before the donation bin.
I am not okay.
James Petrosky:*I have absolutely everything digitally, and haven't even owend a CD player outside of my car for a decade. It doesn't make sense, it doesn't have to, some things are just hard.
Here we go again.
Lots more in suite side effects today. Had to pause treatment a few times. That's happened before, but never this much. I hope it's not a trend.
PICC's gone, though. They pulled all 20 some cm out all at once and I didn't even feel it. Once the access to the port has been removed, after the take home bottle has been removed and I'm through hydration, I can have my first plastic wrap free shower since September 14, 2023.
Hydration is just running saline through the port to help clear remaining chemo drugs from my kidneys. It's fairly a common part of treatment, I was just bouncing back quickly last time so it wasn't necessary.
James Petrosky:I'm sad about this, but you can't wear a mask properly with as much beard as I currently have. And my immune system is already as bad as it's ever been, so it's just as well