Cancer Selfies

Sleep, hopefully not a side effect of the shot

For the first time in 2.5 weeks, I didn't spend an hour throwing up in the middle of the night AND managed to sleep through the night.

No idea why. Hope it wasn't Covid-19 vaccine side effects.

Fake medicine is ruining the intnernet

My life would be a lot easier and better if, when I searched for a health related subject, the search engine only looked at the sites of large, reputable hospitals and government health organizations.

From the comments

James Petrosky: I don't want your natural, I don't want your home remidy, I especially don't want your spirituality. I just want to know a handful of possible reasons why my mouth has tasted bitter for weeks.

I got both shots!

Holy shit national grocery store pharmacy has both vaccines.

Holy shit maybe I can sleep through the night because of it.

Returning to the Chemo Suite

I said a few weeks ago that my cancer symptoms had become more noticeable than my surgery symptoms, and today's talk with the oncologist was a natural consequence of that. I see her again on November 6th, and return to the chemo suite on the 8th.

This is not inherently bad news. The CT scan showed no new tumors, my blood counts are good, there is no evidence of dangerous new mutations yet. I've simply been off treatment for over six months, and it's time.

I'll still be receiving the same chemotherapy cocktail, with the same two week cycle, and the same take home bottle. I am not excited, or looking forward to it, but at least I know exactly what to expect this time around.

I asked about future chemotherapies. There are an additional two varieties of chemotherapy regularly used for colon cancer (which is what I'm being treated for, although I have the related appendix cancer), I don't remember much about the third, but the second is largely similar to what I've been on so far, side effect wise. For me, it's comforting to know that the expected time my treatment options will last is longer than my prognosis, so I shouldn't have to worry about pain.

In the next month I need to get my broken tooth pulled, ideally quickly so it has lots of time to heal before my immune system crashes around cycle 3. I need to finally see my palliative care doctor and get those plans firmly in place. I need to get legal stuff in order. I need a port installed and my PICC removed. And I have one more day trip to make.

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.

Lost my keys again

I've lost my car keys again. Third time since Labour Day. I never used to lose my keys, but I have a real hard time with this sort of thing these days. But how to navigate Timmins, Ontario, a city I haven't really visited since 2004? No fucking problem.

From the comments

James Petrosky: Yes I have a place I always put them. I was extremely surprised to not find them there. But things can get confusing when bringing in groceries, hands are full when I pass by the spot, and between putting away yoghourt and egg nog (it's been available since September 27th) and keeping Thomasin from escaping, I have lost all memory of everything.
Yes, Timmins isn't a terrifically complex place to navigate. And probably looks little like when I was last there. But it's still the kind of thing I remain capable of remembering

Ribben like stool

I have learned a gross thing that is my responsibility to make sure as many of you know as I can.

If your stool is thin and ribben-like, you should talk to your doctor about it.

There's a small chance this information could have changed my disease progression, because I'm fairly sure it appeared before the pain. But I talk about pain without hesitation on social media, and after a year of constant diahrea I still find the subject unpleasant to talk about, so I never wrote anything down about it, and I can never know the chronology.

From the comments

James Petrosky: When I read ribben like, I knew exactly what it meant, there was no doubt. So if you aren't thinking "oh yeah that's what that looks like" right now, you can let the anxiety go for now.

RIP tooth filling

This year I'm celebrating Thanksgiving with lots of yoghurt and hummus (not at the same time) because my filling lasted a week and now that tooth has got to come out.

Thanksgiving during the plague

By the end of March 2020, it was obvious that Thanksgiving was lost. The scientists were working hard, but clinical trials and logistics just take time. 2021 was quiet and careful. 2022 was in a cabin in Wasaga Beach. 2023 is delayed, because Covid-19 never left us. I don't know if there will be a 2024.

I have a firm no regrets policy (for that is the path of madness), but I wish I'd known that 2019 would be the last normal Thanksgiving of my life.

Even if I doubt I'd change much.

The following was originally posted October 5th, 2020

We're closing in on Thanksgiving, easily my favourite holiday, and even knowing that it's essentially been cancled since March hasn't helped me cope.

From the comments

James Petrosky: This is sad, have a cat

James Petrosky: I'm going to say something that sounds contradictory but isn't.
I'm doing okay, I am as joyful as I seem, I spend my time listening to science communication and get to think about dinosaurs a lot.
The knowledge that every marker - every holiday, anniversary, astronomical event, that passes could easily be my last is a profound weight that no one else can bear for me.
The geese are leaving me, but there'll always be someone to welcome them back.

Its a negative

So it's not Covid-19, at least

From the comments

James Petrosky: Still tired with a messed up digestive situation. But I guess the cause of that was always a bit obvious

Picking apart symptoms

Trying to pick apart symptom causes is hard. Yeah, the cancer is obviously leaving me a specific sort of tired all the time, and limits my endurance on activities. It also does wild and continuously changing things to my digestive system. I'm taking a break from cannibis, in part so that there are fewer potential complications at the dentist Monday, but also because its periodically a good idea. That obviously causes changes in apitite and sleep, too.

But all that doesn't seem enough to explain how tired I am right now, at least I hope it doesn't, since I've slept for most of two days (one after an outing is normal, not two). I know I'm not drinking enough water, my tap water has always been awful and, because of the tooth, I'm trying to cut back on pop and juice. And it feels like food is sitting in my belly, not doing anything, which is absolutely a chemo side effect but not one I'm terribly familiar with outside of that.

Anyways I'm going to see if I can get my hands on a Covid-19 rapid test tomorrow. Exhaustion and digestive problems are 100% explained by the cancer, but still something feels off.

If I do have it, I was either exposed on Tuesday at the gallery or Sunday in Huntsville, either way useless for the contact tracing we're not doing. And that puts me on day 2 or 4 and I'm just as tired as I was after September 10th when I did my Burleigh Falls outcrop trip. So if it's positive, it's very mild.

From the comments

James Petrosky: There are no respiratory symptoms at all, so I didn't even consider it. I spent most of the summer lying down and resting, spending two days doing that after a night of insomnia doesn't even feel worth mentioning.
I had attributed the insomnia to the cannibis, normally I have some before bed to help me sleep, and insomnia is a discontinuation symptom in some people. But covid also matches it. Too many variables, no where near enough data.

I broke a molar

Last night, while driving home from the art gallery on York road 27, because I over did it and was too hungry for the 400, I broke a molar in half eating a particularly crunchy chip. I'd love to go into a long, somewhat detailed explanation of how chemotherapy weakens your teeth and leaves you more susceptible to tooth decay and other damage. Chemotherapy can cause a lot of oral complications, the most common being painful mouth sores. But I didn't really experience any of that. And, with the possible exception of some mouth cancers, cancer and chemotherapy don't really affect your teeth (I don't know about radiation, I never recieved any and even if I had, it wouldn't have been pointed at my face).

This is a 100% self inflicted injury. At diagnosis, I had to change my diet pretty dramatically. I was the sort of person who did a good job getting my fruits and vegetables, my fiber. But with my compromised digestive system, insoluble fiber is not something I should be having. These changes were fine, largely sustainable and did not cause harm, but it meant my new standard diet was largely my comfort foods, both for dietary and psychological reasons.

Ten months later, in June, the stress leading to the surgery broke me. Since comfort foods were already normal (and since I genuinely didn't know if my guts would allow fast food ever again), I switched largely to junk foods and a lot of pop. But that was only a week, and had things worked out, we wouldn't be here.

But gang, the concept of long term planning is cut off for you, and you're pretty sure you can't fuck it up bad enough to develop, say, diabetes in the time left to you, you always get that pop (or drink that makes you happy). I didn't take care, because in most circumstances I don't need to take care*, and now I'm stuck at home all week eating soup. And I don't care for soup.

From the comments

James Petrosky: *not needing to care isn't necessarily a end of life thing. I know very well what I'm not going to want to consume once chemo starts, and know already that I should only have a burger if I have no plans for the next day (and am near home already). Both of these suck in their own way, but they aren't death.

James Petrosky: This tooth is dead, I haven't taken any painkillers for it at all. It was almost pulled last summer when it's pain level was similar to that of the cancer pain (a greater pain may exist, but it is beyond my capacity to imagine it). Waiting around hoping for a cancelation is more frustrating than the tooth is painful

James Petrosky: Also, big problem with groundwater that people round here on groundwater likely think is an advantage is lack of fluoride. My teeth were simply not as strong as they should have been

The cancer eon

This is one of my absolute favourite photos from my cancer eon.

Photo from 2022-09-26: Things are already going better after one cycle

From the comments

James Petrosky:"But James, shouldn't that be era?" Look, it's not anyone's fault that we don't teach the subdivisions of geological time in school (also, I don't think we should, time would be much better spent on astronomy or evolution).
An eon is the largest division of time, the precambrian is takes up three of four eons. In analogy, moving out after high school might be the sort of thing worthy of changing an eon. For me, cancer is an eon.
An era is a subdivision of an eon. The mezosoic is an era. All dinosaurs evolved, lived and died (except birds) in the mezosoic. I have chemotherapy, surgery and post surgery eras.
To torture the metaphor, eras are made of periods. Jurassic, ordovician, paleogene. I did three courses of chemotherapy (broken up by CT scans), each course is a period.
Periods are broken into epochs. If you hear a geologist say "upper triassic", that's an epoch. A 14 day cycle of chemotherapy would be an epoch.
Finally, we have ages. The smallest geological unit. The metaphor is stretched to uselessness, but the comparison is a day.

VLog: September 18th, 2023

Recorded from inside Atmo-Sphere, a sphere of gneiss by John McKinnon, located inside the Sculpture Forest.

Pre-paliative CT scan #2

I have a CT scan in an hour.

I've had anxiety about CT scans before. But treatment reduced or eliminated symptoms, so in my memory I wasn't too worried.

I have no confidence about this one. Symptoms are tolerable, but measurably worse. And the source of the agonizing pain, the primary symptom that told me something was wrong, has been eliminated perminantly twice over.

I'm in the dark. I don't talk to my oncologist until after Thanksgiving.

I'm tired. I don't want to be a professional cancer patient anymore. I just want this to be over.

But that's not available to me.

From the comments

James Petrosky: Thanksgiving is October 9fh. I see my oncologist on the 11th.

James Petrosky: It went fine. My physical reaction to the machine and the contrast was the same as always. I think my anxiety spike is getting worse each time, but I don't really remember the scan I had in the spring very well now, and my anxiety has been much worse post surgery.

VLog: September 17th, 2023

Saint-Louis Mission National Historic Site is located in Tay Township, Ontario, just outside of Midland, Ontario. It consists of a monument, two plaques, and a small area of cut grass in a forest. Nearby is a monument to an early Anglican Church. I visited sites in Tiny and Springwater as well, but none had much worth talking about.

The narratively correct ways to die of cancer

Boy do I have a lot of feelings about the Terry Fox Run, F🎗️ck Cancer bumper stickers and the like, and the way the media talks about cancer patients. But it really is a lot lot of feelings, and I haven't been able to articulate them in months, so I guess this is all I'm capable of saying to mark the 42nd Terry Fox Run.

From the Comments

James Petrosky: The man did great things, but it sure would have been nice if we, as a society, hadn't decided that running across the second largest country in the world was one of the proper ways of dying of cancer. It's an impossible standard to live up to.
Nobody dare say you don't hold me to this standard. Just don't.
I know you, individually, don't. But I've been scouring the news for months and it is absolutely how we, as a society, feels.
The actual requirement to die this way correctly is to pick a physical feat that a regular person would recognize as difficult and also something they'd never do. Journeying across the country is the best possible choice. The country is fucking huge. Across a province, or a long trail system also work for less physically capable people. Going from fat pre diagnosis to running marathons also works. The important thing is that you have beaten cancer, and are taking a victory lap (and telling society that you care about your health now, because did you really do everything in your power to avoid cancer in the first place?), or are the general, getting yourself ready for the final showdown (you were going to die either way, in the case, but at least you tried by doing something that was never going to affect the outcome)

James Petrosky: I am not about to go policing how any cancer survivor, family member, or terminal case relates to, and talks about, the disease. If you're thinking of a fuck cancer sticker for my benefit, don't. I hate them. I don't need the constant reminder, I already know it's a pretty shit disease. But if it helps you, have at it.
This is complicated by the juvanile jackasses who broke out the Fuck Trudeau signs days after his election. Whether any of us like it or not, a comparison is being made. What was once a flippant say of saying "ugh, this giant class of diseases, right?" now is forever tied up in conservative grievance politics and the fascist trucker convoy. They made a statement against a disease into a statement in favour of another one (that would fuck me up beyond fixing if I got it again)

James Petrosky: Devoting your life to something important to you is one of the three correct ways to die of cancer. The second is to deny the situation, seek out experimental treatments, and fight (because cancer is a battle, and when you lose a battle, you are at least somewhat at fault (unless your a World War 1 general)). So, really, if you don't fight, how can you be upset about dying?
Again, I don't need to hear that you don't think this about me.
Of course it's really complex in reality, most experimental treatments don't work because that is the stage of research they're at. It showed promise in a dish, let's see how it works in a body. But side effects exist, especially on treatments that haven't been proven to work yet. So, really, the treatment probably won't do much good, it's almost certain to leave you with vomiting and constant diahrea. But you're still the general, and it's still your battle to lose.

James Petrosky: The third proper way to die of cancer is only available to people much older than me. 50 is young in a lot of cancer circles. People 65+ can be praised for dying in their beds, surrounded by friends and family, reflecting on a life well lived. I'm 36, so I haven't lived enough. I just get to die an illegal death from cancer.

James Petrosky: Non Canadians. Terry Fox was a young man who died of cancer while trying to run across the country. He started on the east coast and made it to Thunder Bay, Ontario. He's probably the person you can get the most Canadians to say was the Greatest Canadian.

Anxiety: "You aren't dying right"

Extremely bad news to all my anxiety friends! You're going to spend the whole time you're aware that you are dying (and I don't mean in the sense that death is the only birthright of any living thing, I mean in the active sense) worrying that you're doing it wrong, that maybe you should be spending more time tidying so that you can look like your holding together (which obviously has nothing to do with how much dust is on your bookshelf, but fuck does it feel like it should).

From the comments

James Petrosky: I think this is the unpleasant death subject I think about most. My sincere belief is that I made a todo list of mostly just weird junk to occupy time and give me enjoyment. But another valid interpretation is that it's an act, intended to fool me and everyone else, into thinking I'm processing things well, when really I'm so fucked that I can't even be honest about my own motivations.
I think I'm doing trips because I experience genuine joy from them, but I haven't figured out how to tell for sure.

James Petrosky: Tidying and cleaning is a really, really big one for me, because it's something I've always failed at. So, naturally, if I can keep my apartment in order, then I'm doing fine, and since it's a fucking disaster around here (asside from the litter box and toilet), I'm not fine. (Specifically do not want offers to help, holy shit the only way to make this worse is to have to admit I'm no longer capable of maintaining my space, even if it's true)

James Petrosky: My thoughts are very fragmented here, I should have probably let this one develop a little longer. But the take away is that there's no right way to die, there are probably wrong ways but if you aren't doing colonialism looking for the fountain of youth, you're probably okay.

Tiny Marsh: Late Afternoon Lookout Loop

I took a walk just before sunset on September 6th, looking for small woodland animals. Video includes a walk through a marsh on a boardwalk, some leopard frogs and a trumpeter swan towards the end.

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.