Cancer Selfies

Big Chute Marine Railroad

Sitting on my mother's recliner, recovering from my aborted cytoreduction+HIPEC surgery, I had plenty of time to watch YouTube videos with my parents and join them (well, largely my father) in sharing interests. Selected highlights include the extremely well web cam covered city of Ust-Kut, Russia, a visit to Bourbon Street most evenings, and following ships through the Great Lakes-St. Lawrence Seaway. Plus, of course more 40s and 50s detective stuff than it seems possible for a human to get through. It was a nice time.

Ocasionally, we'd split the live feeds up with people's travel videos, short documentaries, and silent walk throughs. And I got inspired. While, in terms of years, I had little time, but in terms of free hours, I had more than I needed.

That inspiration became fixation one day when we were looking at videos of odd locks. Bathtub hydraulic locks, like the kind at Kirkfield and Peterborough, fancier versions of the same that sweep circular arcs, large shipping locks. But the one that caught my attention most and quickest was not really a lock at all, it was the Big Chute Marine Railroad.

Big Chute is part of the Trent-Severn Waterway, a national historic site(s) located in Ontario, allowing water traffic to travel from Trenton, Ontario, to travel to Port Severn on Georgian Bay, bypassing Lake Erie and the St. Claire River (which made a lot of sense in the post War of 1812 days). It's also only about an hour from where I lived at the time, and was a perfect picnic outing to start my living at home surgical recovery.

Operation is simple, the railway has a car, pulled by cables in a central wheelhouse, to which boats attach. When the car is full, or there's no one waiting, the cables pull the car to the other side. It was fascinating for me to watch, I ended up canceling another stop for the day and listening to podcasts while eating tuna sandwiches at a picnic area nearby.

The reason they didn't construct a conventional lock here (like they did on all but a few other locations on the canal) are that the rock would have been prohibitively expensive to blast, being hard precambrian shield, as opposed to much younger sandstones and limestones. The vertical drop added to this issue. These days, it's good that they didn't go this way, it allows the Big Chute to remain passable to spawning native fish, but an impenetrable barrier to of concern invasive fish. This engineer likes it when oddities of engineering are functional as well as weird, and Big Chute really counts for that.

Big Chute was my first stepping stone to recovery, and the fall of 2023, when I was off on a silly yet exciting, to me, adventure every couple of days. I taught myself how to make videos, to document, and to have fun doing it. Getting through eight months of chemo, and actively deciding not to give up after the failure of the surgery I gambled so much on, started to pay off here. I choose to be my day's best self every morning (even if best self is a slug who eats Doritos in bed and watchs Archer on repeat for three days and does nothing else), and Big Chute is an important inflection point. Yes, I was doomed. But I was still alive. Still here. And making something of it was going to be a delight.

Scrap-Book Post

Trips & Treatment

This set of photos was taken over the past month.

I can't remember if I've said anything about the CT scan I got a few weeks ago, or the blood work I had done before I left for Bancroft, but that has happened, and it's time to see my oncologist. The appointment is tomorrow afternoon.

I don't have a good understanding of how people think I'm doing. I know I've been pretty vocal about how the surgical recovery has been going (very well, overall, but further gains are likely to be small, although its possible I don't yet know my capacity in some regards). But I have been less vocal (I think) about cancer symptoms.

I haven't been able to sleep through a night in weeks. I'll wake up, with my guts feeling like their solid, in the middle of the night. Sometimes water makes me have to use the bathroom with urgency. Sometimes it makes me throw up for a half an hour. Either way, sometimes I can get back to sleep, sometimes I doze until noon.

The list of things my dietician recommended I avoid a month or two ago has become largely mandatory. The small amount of coleslaw you get with fish and chips is usually fine, but salad or a helping of broccoli is a mistake. Fish never seems to be a problem, chicken is fine unless fried, and most red meat should be avoided. These rules must be followed exactly when far from home, or if I want to travel the next day, but can still be relaxed a bit if I'm staying in the Midland area.

The combination of chemotherapy and sleeplessness, at least, have left me extremely forgetful, clumsy and sluggish. I keep losing my keys. I've forgotten how to do basic computer stuff I've known for decades (or have tried to do it the Windows 95 way). I cannot focus on books, even though I got a fun adult book about dinosaurs from the library. My cooking abilities, long atrophied by years of deep depression, can't manage with my boring diet, tiny kitchenette and lack of energy to do dishes or other chores.

There are pains. Pains in places I especially don't want them, places that might indicate tumor growth (but probably not spread). But are they the sort that predate all this? I can't remember. I'll bring them up.

I'm extremely tired. I'm not particularly jazzed about continuing to do this. I've grown more and more convinced that the Bancroft trip is my post surgery peak, and that it's slow decline from here on. Those sort of thoughts are the way of madness, but the nature of the recovery and the disease means there will exist a peak or plateau.

Two weeks ago I was pretty certain I would not be restarting chemotherapy this time. The CT scan report only reinforces this conclusion. But the last few weeks have been rough, and I'm a lot less sure now.

<figcaptionHuntsville sculpture forest

From the comments

James Petrosky: When I started, I had many reasons to take my selfies, but I was pretty certain they weren't for me. I have no idea if they were then, I don't have access to that brain state. They're absolutely, in part, for me now

James Petrosky: I took a drive, ate a shawarma, almost ate some additional Taco Bell (the line was too long), had a nice drive until I met a raccoon, found a potential corn maze that's very close, and feel a bit better. It's hard to make yourself eat when your stomach is off, even when you know it'll make you feel better. And I need to try harder to get out of the apartment every day, even for a little walk, even if it's hard once the October storms come and it's always so rainy. None of these steps solve anything, but it isn't about solutions, it's a about comfort. For that reason, I'm happy to see my oncologist tomorrow. I get to do a trip to Barrie, I get to talk to people and be around people who, sadly, understand my situation. I get to go for pho after, which is damn near the perfect food for if you're chronically underhydrated like me.
I don't like chemotherapy, but I like trips and cats and people, so if it's time for it, then I look forward to quiet days laying in bed watching old noirs.

VLog: September 14th, 2023

Its another road trip day! I'm traveling through Severn Township today.

OPP Museum

I visited the Ontario Provincial Police Museum at the OPP Headquarters in Orillia, Ontario. I was unsure about making this stop, but it was free and only a few kilometers out of my way. You are visiting the HQ, so your information is logged into their systems and you must present photo ID. There was a sign encouraging you to take photos, but I didn't see it until my way out, so I have nothing from inside the museum to share.

Antiques on 11N

Antiques on 11 North is one of my regular junk store stops. Its weird going to them, because I used to leave with the exact sort of things I'm trying to get rid of now, but its still enjoyable

Swing Bridge Foundations, Highway 11 at Trent-Severn Waterway

This is the former site of a swing bridge. Its a prety spot to stop for a picnic, but Highway 11 makes it a bit loud.

Limestone Outcrop on Cambrian Road

I didn't record a video at Lock 42 Couchiching because I intended to record one at #43, but that didn't work out. This is either the Gull River formation (the same one as at Burleigh Falls) or the Bobcaygeon formation, both are limestone and both are exposed near this location.

Big Chute Marine Railway

I've returned to the Big Chute Marine Railway (#44) because Lock #43 Swift Rapids is reachable by water only. This is hinted at on the Trent-Severn Waterway webpage, but not explicitly stated. I had plans to continue to the final lock, #45 Port Severn, but the locks aren't operating anymore and the washrooms are closed, so its time to head home.

VLog: September 9st, 2023

I travel a route through central Ontario passing through Coboconk, Fenelon Falls, and Bobcaygeon to arrive at an rock outcrop near Burleigh Falls.

Part 1: Balm Beach

Part 2: Coboconk, Ontario

Part 3: Trent-Severn Waterway Lock #35: Rosedale

Part 4: Kawartha Settlers Village, Bobcaygeon, Ontario

Part 4: Trent-Severn Waterway Lock #28: Burleigh Falls

Mortality

I reflected on this on September 4, 2024

This is the anniversary of when I started this album. I'm not sure what I thought I was doing then, but eventually I found my comfort zone relating my experiences with the medical system - the administrative side and the treatment side. This was a comfortable place through chemotherapy, and honestly an exciting one for me to be in through surgery. But I've struggled a bit since then.

I thought it was just that surgical recovery was boring (and it is), but chemotherapy was the same two week cycle sixteen times, and I never felt this way about it. I still talk nonstop about my cancer, as any of you who know me in person, or are in the same Facevook groups, can attest. But I haven't been able to figure out this place.

I think the reason is that, in light of my failed surgery and prognosis, the only place it made sense for me to go was do the same kind of day by day thing, but instead of it being about getting the full cancer trearment experience at 35, it's about grappling with mortality at 36 and, statistically, dying at 37.

Mental health wise, I'm just coming down from a minor hypomanic episode and feel stable, bipolar wise. My lithium levels are good. If asked how I'm doing, I'd truthfully answer "good, given the circumstances," but I can't tell you if that means I'm doing good.

I'm not an actor, though, when you see a look of delight on my face, that's real. I do have an actual notebook with an actual list of neat stuff to do and I am actually crossing things off on all my little adventures. I'm getting out and experiencing the world. Probably doing way more than I ever would have if I remained otherwise healthy, too, which is a thought too terrifying to contemplate.

To end, because it's been haunting my dreams and hopefully sharing will help, if someone, someday, talks about my death bed conversion, know that they are a disgusting fiend who takes advantage of the vulnerable to glorify themselves. If disease progression or treatment leaves me vulnerable earlier than that, same logic applies. These people were never able to convince me so far, I doubt they'll come up with something compelling in the next few years. I doubt I'm interesting or notable enough to receive this treatment, but I know it happens, so I know I'm not 100% unreasonable in my fears.

From the comments

James Petrosky: 37 is an estimate. I don't want anyone who knows me well enough to start doing math on my birthday and panicking. 38 is probably a better estimate, but 37 fits the flow a lot better, and it's all statistics based on regular colon cancer anyways

James Petrosky: I want to dramatically say "from here on in its all about death" but honestly it's been that way for a while. You have no idea how happy the "thinking about death" joke in Barbie made me, because a) it was funny, and matched my mental state perfectly and b) gave me a lot of cover to joke about it all summer. So thank you, Uncontrollable Thoughts of Death Barbie, you're a life saver.

James Petrosky: Somewhat related to liars for Jesus are liars for other spiritual causes. Mediums, channelers, seyances, ghost hunters, it's all evidence free nonsense, and they do tremendous harm to people undergoing grief by giving them a false hope that can never, ever be realized. If there is somehow an afterlife that can communicate back to the living, I promise you I'll never, ever give these dangerous frauds the time of day. I can be a stubborn person, and this is the thing I'm most stubborn about, so you can be sure I'll hold to it.

Because we live in something approaching a techno dystopia, it's possible to train a large language model on someone's social media history to create a computer program that can write and speak like you can. Maybe there's not enough information available for me. Almost certianly I'm not important enough for this treatment. But if this is done, and it's done well enough to be convincing, the output program is also not me. It's just an actor, playing a role. The same as a spiritualist, they just learn their script from different sources.

VLog: August 23, 2023

I visited the Kirkfield lift lock (but I overdid it)

Treatment on pause

This isn't even an anniversary I remembered, but on this day in 2022 my partner and I sat with the surgeon I'd been seeing for my abdominal pain and had all our worst fears confirmed by the results of test after test. And you know what? It's fine. I forgot. My partner and I went to the Toronto Zoo, not to mark time but because it's a fun way to spend a summer day.

Apparently the beaver at the zoo has passed away, and that hit me much harder emotionally than August 17 ever could. The beaver wasn't the fattest or roundest of the fatrounds, but they slept right against the glass window that opened into their lodge, so you could always get a good view. The beaver was probably my favourite exhibit.

I have no appointments in the next month. I've grown used to seeing someone every week or two. It's honestly become part of my identity. I'm not upset about it, obviously, but it's still weird. I've been busy, and my strength has been returning, which is also nice.

VLog: August 13, 2023

At the Big Chute Marine Railway, acomplishing things from my todo list