Cancer Selfies

Immunocompromised Already

What took five full cycles last time took one this time. My white blood cell count is already at the point where we're discussing options. So far, the immune boosting shot isn't on the table, we're going to try adjusting chemotherapy dose instead and see how that works. This, and my nausea response, have driven home that even though I'm calling this cycle one again, it's really more like I restarted at cycle 17, with my tolerance already much, much lower than where I started originally.

The following was originally posted November 21, 2022

Cycle 5 Day 13

Today I found out that my immune numbers had finally fallen past the point where something has to be done. I had the option to delay my treatment a week and allow it to recover, or start another drug that's designed to do the same.

I chose the drug. There are too many appointments, especially my CT scan Monday, that would be either too much effort to reschedule, or would not be able to be scheduled soon enough. I'm extremely unenthusiastic about a needle in the belly, but it's better than getting sick from the bacteria that naturally live on me all the time.

The drug is also the first time I'm going to have to pay for my treatment. Were I 65, OHIP would completely cover it. Because the whole system is designed for a specific sort of person getting treatment for cancer. My work plan covers it, so no one needs to worry about me in this regard, and without the CT scan so close I might have opted to wait an extra week, just to see what it would be like.

From the comments

James Petrosky: I've already been only visiting stores during off hours and have next to no in person social contact. I've been essentially acting like I was in this situation since September. The Covid-19, influenza and assorted childhood disease situation locally is more than a bit alarming, but I'm doing what I can to keep myself safe and there is no need for any worry on my behalf.

James Petrosky: Oh! Also, side effect of new drug is bone pain. Which is the least pleasant sounding combination of two words I've heard in a very long time.

Mica: I love when healthcare systems say you're too young to have the disease you have. 🙄 Like, thanks I'm cured

James Petrosky: A side effect of electing mostly old politicians I guess. More seriously, the whole system kind of assumes an older patient. And all I've seen are older.

Werthers for the Cold

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

From the comments

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.

Nickel City

Had to make a day trip to Sudbury, so I visited the Nickel.

Dance (hypo)Mania

The little dance I found myself part way through in the flour aisle is all the proof I need my mental state remains unstill

From the comments

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.

Karaoke for Cats

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)

From the comments

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

Guide to Identifying Waterfowl

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).

From the comments

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.

A minor illness for a change...

Colds are way, way worse than I remember

Twitting

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?

Seven Day Forecast

I am:

1. Eating dinner
2. Watching Taskmaster
3. Listening to Ladies and Gentlemen we are Floating in Space (one of my top five albums)
4. Fucking around on Facebook

All at the same time. Which obviously means IT'S HYPOMANIA TIME AGAIN

From the comments

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

Paradise

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

From the comments

James Petrosky:Don't promise paradise and fail to deliver the stegasaurus

Shower Update

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.

Cyborg Implants

Wanna see the line they put in my neck?

From the comments

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

IV Selfies

Home IV selfies!

From the comments

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.

CD Collection

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.

From the comments

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.

November 7, 2023 (Cycle 1, Day 1)

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.

From the comments

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

Back in the oncologist's office

I see my oncologist at 0915. I have to be there two hours early to visit the vampires and get some bloodwork done. It's a 45 minute drive under ideal traffic conditions, which won't exist on Monday morning at 0700. I got to sleep around 0200, and haven't gotten a proper night's sleep in a week.

We're off to a great start.

From the comments

James Petrosky: Ha! It is as I feared. 0915 was when I needed my bloodwork done to be ready for my 1115 oncologist appointment. Hopefully it warms up a bit so I can nap in the car, but I'm not hopeful.

Normally I get a slip with the appointment time and a note to be here early. For your first appointment in a chemo course you get a call and they tell you the times. Friends, I did not leave a not to tell myself which time I wrote down.