Cancer Selfies

VLog: August 2, 2023

Why I have so many Squishmallows, also its my Cancerversary! I made a video, too.

First Cancerversary

One year ago today, I recieved a somewhat unexpected call from a surgian I'd been seeing about a mysterious, but monstrous, pain I'd been having on the right side of my abdomen. She had figured out the likely cause of my pain. It was cancer. I don't remember much else about that day, don't remember when doctors started using phrases like "stage four" and "high grade". I know that instead of waiting weeks for an ultrasound and months for a CT scan like I had for the diagnostic stage, I had both scheduled by the morning of the 5th to confirm what we now all feared to be true. August 2nd of that year was one of the worst days of my life (September 2nd of that year, when I first met my oncologist is also pretty bad, and June 9th of this year is worse).

August 2nd, 2023 is not like 2022. I've come much too far, underwent way too many unpleasant, painful and nauseating procedures, for that. I'm not here to tell a story I've already told, to dwell in much worse times. We're here to continue our stories. To live, be joyful, experience whimsy, to pet cats. To live in the best way the fates allow.

August 2nd, 2023 is my First Cancerversary. It's an idea that's been rattling around in my head since late June that was as fun to do as I hoped it might be. It's a celebration of life, of survival, and of joy. With the surgical recovery and a few other things going on in my life, I couldn't have a real party with human guests. But I've got big ideas for next year, because birthdays may feel less impressive and meaningful every year (they aren't though), marking time with cancer becomes exponentially more important and noteworthy with every passing year.

I don't want anyone to think this is just making the best of a bad situation, or that I'm putting on a smiling mask, or anything like that. I am genuinely joyous and excited about this. I did originally intend it as more of a silly joke than where I ended up, which is physically, mentally and emotionally exhausted after two long days of work. I'm left with a bittersweet feeling, which feels right, and feeling anything after over a decade of mental health struggles is fantastic.

From the comments

James Petrosky: Part of the reason this took so long is that there's a video, too. I'm happy with the result. I've been making short daily videos for a few weeks now, too. It's nice to have something to pass the time.

VLog: August 1, 2023

I have a surprise for you tomorrow tomorrow :)

Chemotherapy is life

July 31, 2023 - The tests are all done. There weren't that many, two passes through the CT scanner and three vials of blood (no urine, I sat uncomfortably for nothing). From these my oncologist (with the assistance of the radiologist, who I've never met but has had a tremendous impact on my life) will be able to tell how aggressively my cancer has bounced back in my four months without chemotherapy. A slow recovery for the cancer is obviously ideal, that gives me my best chance at a better quality of life, but that would also mean we could delay a few more weeks to allow the incision to heal more fully. But, in a less ideal case, we could start chemo sooner, and accept a longer healing period for the incision. The first case is preferable to me for many reasons, but since most of my physical restrictions were lifted last week when I saw my surgeon, most of my anxiety about the situation has lifted.

I recieved my diagnosis around this time last year. I barely remember any of it, things moved so fast, there was a new appointment every few days, I was in so much pain. Starting chemotherapy was terrifying. You can lie to yourself, pretend a bad thing isn't real, for a long time. It wasn't the CT scan, booked in days when before it took months. It wasn't the biopsy, which somehow hurt more than the tumor in my belly button. It wasn't the PICC installation surgery, even though seeing the little tube next to my heart on the scan screen was the grossest thing. Or even my first conversation with my oncologist. It was when they started the chemotherapy infusion that it became undeniable. Those chemicals are poison, the only excuse to deliver them is cancer. After then I had no choice but to live in the cold light of that fact.

A year gives us opportunity for a tremendous amount of change. Not always the way we want. Today, on the night of the final day of July, I am excited to restart chemotherapy, tobegin my third course of treatment. Excited like I was for Christmas when I was seven. Because I've fully accepted that, a year ago, I was given the death sentence of high grade, stage four appendectal cancer. I can never change that. I am at peace with it. The totality of it. But I still have time, and I won't get to everything I want (but wouldn't no matter what age I lived to), but through the scientastic magic of modern medicine, the chemotherapy will help me do more of those things.

I'm lucky, my mental health has so far allowed me to choose the sort of hope that I'd available to me. The call to despair hasn't been compelling most of this adventure. I rolled my eyes at radical acceptance when I was doing DBT years back, but it's helped free me from the perminant existential crisis my situation would otherwise require of me. I'm calm. I'm joyful. I'm at peace. I'm not putting on a show. I'm very excited for the next year, and for the medicine that's going to take me there.

From the comments

James Petrosky: At this point, I think the losses in cognative ability are probably perminant. I'm fine comversarionlly, was never particularly skilled with the written word and maybe even improved over treatment from practice, but I notice I'm worse at abstract thought. Last week I got so confused I couldn't recognize that a set was obviously countably infinite (more relatably mental arithmetic is much harder than it was a year ago, and I need pencil and paper for things I've been able to do in my head since grade 9). This sort of stuff has been a pretty important part of my sense of self since around grade 6, when math became fun, and this change causes me more mental friction than my own mortality these days. This, too, must be accepted, and perhaps the joys of pen and paper geometry rediscovered.

What I think of my chemotherapy

This is not about medicine as a discipline, talk to your medical oncologist for that. This is about how I relate to my treatment, and how that has changed as I've received it, and as the purpose of that treatment has changed.

Resuming chemotherapy

I've been off chemotherapy for nearly four months, and my treatment plan calls for three month courses of chemo followed by three month breaks to recover. My break was longer because I had done eight months of chemo and then had HIPEC surgery to recover from.

It's now time to plan the next six cycle course of treatment.

Tiny marsh geese

I visited some Canada geese at Tiny Marsh in Tiny township this morning on my way home from the Cancer Centre. There were many and they were quite relaxed and beautiful.

VLog: July 31, 2023

I did my chemo bloodwork! The goose video is here

Trying on my Iron Ring

Now that I'm no longer a practicing electrician, I'd like to wear my Iron Ring again. But unsurprisingly in the past decade I've put on weight and developed muscle and it no longer fits. I could get a replacement or I could wait for chemo to fix the problem.

I've decided to wait.

From the comments

James Petrosky: Engineers in Canada can participate in a weird cult induction ceremony (that I swore not to talk about the details of because cult) and receive a stainless steel ring to wear on our dominant pinky finger, it's supposed to remind us of our professional responsibility to the public.

Like all cults, it's only interesting if you don't know what's going on and becomes fabulously boring once your in the know. Scientology is the exception.

Pre-chemo restart blood work

There's no memento mori quite like walking into a cancer centre at 0800 on a Monday

From the comments

James Petrosky: At least I'm the youngest one here by a decade or two. All you alls are allowed to be saddened by that on my behalf, but it's so much easier for me

Don't worry about me, death causes me a lot less mental anguish than the fact that I need to do a urine test in half an hour but really, really need to pee now

VLog: July 30, 2023

I only stopped wearing masks in June of this year (and I'll start again soon)

Ontario roadside attractions

After much research (spending a hour looking at a couple websites) I have some observations about the state of roadside attractions in Ontario

• we've got way more than I expected, and I can grab some new ones even on trips I've made dozens of times
• we (governments, private businesses and individuals) really like to build inukshuks. We probably shouldn't be doing that. I'm generally leaving them off my list.
• there are four giant coins, three are real currency, all are extremely accessible and I'm very excited
• there are so many giant Muskoka chairs, there must be a war on for who can get the largest (someone claims the largest in Northern Ontario to save themselves some trouble. If you can't sit in the chair, it's worthless as a photo
• there are many many many moose, bear and walleye
• there are more cows than you'd expect
• there are a lot of dinosaurs, usually at mini put
• St. Thomas has a Jumbo the elephant statue that I simply must visit
• Wawa apparently has three goose statues these days

I also found lists for other provinces, if I can ever make it more than 100km from Lake Huron

From the comments

Britta: I want to see the big coins

James Petrosky: Britta there's a nickel in Sudbury, a place I go and go through regularly, a loonie and a toonie along the routes to see other things (my brother in Ottawa, for the toonie, and the Wawa geese for the loonie). The last is a gold coin way up by the Quebec border in Northern Ontario, which is probably not going to happen.
James Petrosky: I've been to The Big Nickle maybe four or five times over my life, and until I realized there was a set I needed to complete I wasn't going to go back 😛
James Petrosky: I can't find a photo I like (one with a human for scale) but the coin itself is 30ft tall (9.1m, it was built before metrification). I always forget how big it is

Monica: If one of the websites you looked at wasn’t Atlas Obscura, I recommend taking a look. Lots of weird things to see and do

James Petrosky: Monica I've used it in the past, but it's Ontario coverage is sadly pretty poor. In Toronto and Ottawa it isn't bad, though
James Petrosky: Monica Bell I must have been searching badly because it's got way more junk than I remember now

James Petrosky: If anyone knows cool shit between Kitchener, Ottawa and Elliot Lake, I'm all ears. I already won't get to everything in my notebook (maybe even if I had ten years, BC is far, after all), and I'm finding the idea of possibilities really pleasant right now.

Geoffrey: I always thought this was interesting: top 100 unusual things to see in ontario - Google My Maps

James Petrosky: Geoffrey I've been to a small number of these. The Rideau Canal is pretty easy, Nicholson, Ontario (an hour drive and half hour boat ride outside of Chapleau) is quite another.
Anyways I'm saving this so because there's lots of neat stuff here

VLog: July 29, 2023

A 1% chance of death is a terrifyingly high chance

Carillons

Did you know that I find carillons to be one of the coolest non synth instruments? Did you know there was one in the Peace Tower? I didn't! But parliament's centre block is under renovations and it isn't presently in use. So I need you all to leave out hardhats and reflective vests for the construction gods because I need to get to listen to it.

From the comments

James Petrosky: There are ten other carillons in Canada, all but two are in southern or eastern Ontario. So my goal is to get the nine easy ones. Montreal might be possible. Victoria is unlikely.

I genuinely thought that there were a handful in the states, largely in the original states, and that was it for North America. I didn't even think to look for more 😮

Lots of bad anniversaries coming up

Past James had best enjoy that long weekend, even with the ruined pizza, Tuesday is going to be the worst fucking day

I've got a lot of feelings about the coming week, but I'm in a good place, mentally. I've found my peace.

The following was originally posted July 29, 2022

Guess who forgot they couldn't taste food and bought pizza to celebrate the long weekend?

From the comments

James Petrosky: I'm also pretty sure I worked all weekend, maybe even the Monday. So I didn't enjoy the weekend. Sometimes thats just how it goes

I was supposed to be on vacation that week, too. Which made all the testing I had to do that week (blood, ultrasound, CT) much easier to work around.

VLog: July 28, 2023

The brain fog is real

VLog: July 27, 2023

Introducing Thomasin! (she purrs)

VLog: July 26, 2023

In addition to appendex cancer, I also have bipolar (II) disorder and boy howdy is that a combination

VLog: July 25, 2023

Midland is boring, there are lots of appointments, pizza is great

VLog: July 24, 2023

I visited Mt. Sinai for a surgical followup (things are going great)