Cancer Selfies

Curried Soul

I made a curry! The first real meal I've made in over a month. It's so incredibly hard to find the energy, but stop gap measures (eggs, canned food, etc.) only work so long.

From the comments

James Petrosky:It's extremely good, but I made a few grocery shopping errors, so I look forward to following things more closely in the future. https://www.wellplated.com/instant-pot-lentil-curry/

James Petrosky:I genuinely do try to take care of myself, but I'm tired all the time whether I do or don't. I generally don't feel the sensation of hunger, which complicates things way more than you'd expect. And I generally can't tolerate fast food anymore, which may not be great quality fold, but is Big Mac meal is 1000 easy calories I no longer can easily access.

James Petrosky:Since day one of treatment, my mass has been 115kg or within 2kg above it. I'm terrified of the prospect of losing any. That's a one way trip that leads to a skeletal look. I spent the last week worrying that it was finally my time, but now I'm not worried. I can still eat. I still want to eat. I can still get through this.

Cold and Comfort

Spent most of the day cold, knowing that I just needed to eat anything to solve the problem, but still finding everything unapatizing. I eventually made frozen dumplings, which helped.

From the comments

James Petrosky:This is what chemo recovery looks like for me now. Knowing what I need to do, but completely lacking the motivation to do anything about it.

James Petrosky:We're in cycle 5, 7 to go, and it's so much harder this time.

James Petrosky:By cycle 7 or 8, it'll be warming up, and that's going to be nice

James Petrosky:The heating loaf has been deployed

Eyebrow Update

Based on itching intensity, I'll soon have no hair remaining on my face. RIP my bushy intense eyebrows

2023 Year in Review

Gang! I not really a resolution person, but I found mine for 2023 and frankly I couldn't have done a better job in achieving it.

I spent a lot of time with family (the most since I moved out for university), hung around with Thomasin nearly continuously, except for when I got to visit my poodle pals, got to pet lots of friends' pets, saw so many water fowl (including swans this week ❤️), and had more meaningful interactions, in number and in depth, with all of you than I can count.

And I found out there's no more treatments for me, that I get a short amount of time and that's it, and somehow wasn't crushed under the weight. Mentally health wise, I'm still doing better than almost any time in my adult life.

In a year featuring the worst personal defeat I can imagine, I still did fantastic (given the situation at hand). And I'm taking that, and giving myself credit for a good resolution well kept.

New Year's Eve 2023

Happy New Year, from Lady Thomasin and her caretaker. May the coming trip around the sun bring you health, adventure and as many corgwen as you'd like to pet.

The rest of this is going to be pretty serious. Check out here and enjoy a cat in a hat she hates (she stole it and attacked it after this photo) if that isn't for you.

Based on my prognosis, and basic math (you can't do math on a prognosis, though), I am very likely to see another New Year's Eve, but only one more. Which is crushingly sad and upsetting, but being sad and upset isn't going to change that hard fact.

My resolution for my final year is to live deliberately and with enthusiasm.

I practice, I want to celebrate holidays, attend festivals, visit cool places, work through my long todo list, and hopefully, finally, get to meet a corgi. I'm not going to let missing things bother me too much, though, because my focus is on doing cool stuff, not dwelling on lost opportunity (dwelling on things is the way of madness, I'm glad I no longer have the impulse).

My January plans are lots of little adventures with friends I haven't seen in a few months. My first exciting plan is for my birthday/Groundhog's Day, I would love to see Wiarton Willie and partake in Wiarton's Groundhog's Day festival. I've literally wanted to do it since I was four or five (it's day 4 of my cycle, which is rough, but I drove to Sudbury on day 4 so it's not impossible, but we don't dwell on missed opportunities).

My secondary resolution is to try and take even more photos of myself, especially with other people, and record more videos. I'm really excited for this one, and I want to get more confident about doing both in public. Even now, in the situation I find myself in, self improvement and working though fears feels really nice, and I'd love to get that experience a few times.

Everything I've resolved is a natural extension of what I've been doing, so I'm confident I'll be able to hold to it, and excited to try. I hope everyone has similar hope and excitement for their coming year, and if anyone in Simcoe county can introduce me to a corgi I'd be greatdul for the rest of my life.

Chemotherapy, even more of the same and worse

Cycle 3, Day 14

It's been a while. I've lost all my hair. Visited the chemo suite a few times. And been significantly more active outside of my apartment than I was last year. It hasn't been easy, and it's been slow going, but we're more than half way to my next CT scan, which is still a major treatment milestone for me. Like last year, it's two groups of six cycles and a CT scan to complete this treatment plan.

I started this treatment plan with some digestive symptoms, a lot of nausea and vomiting, and a mild-medium pain in my right kidney. Digestive problems remain pretty constant, but the cause is chemotherapy, not cancer, now. At this point I can tell pretty easily. I still experience a fair amount of nausea, but it's limited to the treatment part of the cycle, a huge quality of life improvement. My kidney is doing better, and no longer causes discomfort, but will require monitoring for the rest of my life (it's part of my standard bloodwork, though). We're back in the swing of things, the rhythm of treatment is normal again, and it feels as good as this sort of thing can.

From the comments

James Petrosky:

James Petrosky: It's harder for me to talk about things this time around. It's all so normal now. It's cycle three, but it's also cycle twentyish. I don't have anything new or interesting to say about chemotherapy. And we're not working towards something exciting, we're doing it all because it's part of the assumptions that go into the prognosis calculation. It's how I get my year. Which is hugely meaningful to me, and those around me, but it's not sexy like major surgery. Human beings will adjust to anything.

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

Hair Forecast

My head is very itchy, which is how I know I'll have very little hair by end of week

Breaded

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

From the comments

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/

Hair Deforestation Update

At this rate there will be no hair on my head by Decemberween (if not sooner)

Beard Deforestation Update

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

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

Excitement and Mania

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.

From the comments

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.

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?