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.
On Tuesday afternoon, I make my return to the chemo suite at Royal Victoria Hospital. I haven't been there since the spring. Leaving, I had a very reasonable expectation that I might never have to go back.
But I have to go back.
Last chemo winter, I was so very careful. No theatres or other recreation. Grocery stores during off hours only. No rare meat, raw fish or runny eggs. Last winter, with the promise of surgery, it was easy to hold to these rules. It's going to be much, much harder this time. I need to ask what the risk level is.
I've been busy this past month. A few weeks ago I packed up my work toolboxes and all but officially ended my work life. I'd have gone back had the surgery panned out, but I doubt I'd have lasted very long. My time off had given me needed perspective. Going back in wasn't very hard or emotionally draining because of that. I've managed to get rid of most of my books, I only still have stuff I want to (but am unlikely to) reread. It's only a small box worth, I'm comfortable with that. Also gone are all the non horror VHS tapes. Months and months of trying to do this task have finally allowed me to work through the feelings problem. As a collecter bordering on minor hoarder, it's a good feeling to get stuff out the door without anxiety.
I have a tremendous amount of dread for the coming six months. It's absolutely necessary and it's going to be rough. I don't want to feel sick all the time (even though I already do) and I've grown vain and really, really don't want to lose all my hair. I love the way my hair grew back, it's how I long wanted it to be. I'll spend the winter in a fairly strong physical and social isolation. When terminally ill people talk about whether further treatment is worth it or not, disease state and side effects are part of it, but so is every other aspect of our lives. Right now, even with this dread, further treatment is worth it for me. We all have to know and accept that won't remain true forever.
The best worst pillow that is no longer at Homesense because we bought it ❤️
The chubby baby has enjoyed my increased lying down timme ❤️
A deal with death
Halloween
Halloween with Lilly ❤️
The maximum extent of my curly hair and crazy beard. The moustache became too long and thin to curl properly a few weeks ago, so it won't make an appearance
Today I had a port (port-a-cath or implanted port) implanted under the skin over my collarbone. It will eventually replace my PICC (peripherally inserted central catheter) for my IV chemotherapy treatment, at which point the PICC will be removed from my arm.
Like a PICC, a port is a catheter that feeds to the large veins near the heart. Unlike a PICC, which always has a length of plastic tubing outside of your skin, the port is completely under the skin. In my case, it has a metal disk attached to a plastic catheter. To use it, the skin above the disk is numbed, cleaned and pierced with a special needle, through which my chemotherapy will be delivered into the catheter, and then into my bloodstream. A PICC works similarly, but instead of stabbing, uses valves and connectors.
The insertion was a surprisingly painless affair. I was given some IV painkillers (through the PICC), some stronger local anesthetic, and then felt nothing as the radiologist guided the catheter down my vein and placed the metal under my skin. Like the PICC insertion, I was awake, and like the PICC insertion, I worked myself up way more than was justified or useful about the procedure.
This will be a major quality of life improvement for me. The PICC requires weekly maintenance by a nurse, the port also requires maintenance, but monthly, and only when not in use. The PICC is through the skin, and that entry point must be kept sterile at all times. The port is under the skin, and is as clean as the vessels it feeds into. This means I can submerge my port, which is forbidden with a PICC. Once the PICC is removed in a week or two, I'll be able to shower without spending 5 minutes wrapping my arm in plastic cling film. Come the summer, I'll be able to go swimming. I won't have to worry about getting so sweaty that the PICC dressing falls off (it happened in July). I'll also set off some metal detectors, which probably won't happen but sounds neat. And as far as cyborg implants to, metal deliberately placed under your skin beats plastic tube coming out of your arm any day.
I hope to never need another catheter inserted into my chest cavity. A port can last years. It should serve me for the rest of my treatment. I have a good idea of what using a port looks like in the chemo suite, I've spent enough time there and seen them in use. I'm less sure what it means for my take home bottle, but I'm honestly pretty excited that there's still new things here, even if I'd rather no one ever have to learn them.
It's 5AM and I'm so tired I want to throw up (I'm good for it, too, it happens most nights)
First waiting room, trade a health card for a hospital gown, go to procedure waiting room 4)
You'd think I could put on the gowns right by now
Post procedure. I think I'm about as stoned as I look, but dangerously I don't feel that way
I believe the lower dressing is the port and the upper was used to help the insertion. I was very tired and drugged, though, so it's possible I have it backward
Back at home. While my face is that red, the rest of me is not, the sterilizing chemical they use is dyed so you can confirm coverage. And I have yet to wash it off.
From the comments
James Petrosky: One of the people in the procedure room (probably a nurse) commented that I have very small ears while putting on the oxygen tube. Which is true, and a thing I've heard a lot before, mostly from romantic partners. What I hadn't heard is that I have a small nose. And because I can see my nose and it's always blocking something I want to see, I've always thought the opposite.
Sherri: What do you spend your time while you receive your chemo? Between [all my treatments], waiting my turn when an ER patient comes in, I might be 5-8 hours at the hospital. TV is what I did ( although some days I just rested). I would have brought stuff, but between the walker and a few other things…
James Petrosky: Sherri depending on your chemo, you can be there anywhere between 1-8 hours. I'm only there for 2-3. There are some Facebook groups I only check every couple of days, so I'll just save up stuff to look at. My Switch's battery lasts about 3 hours. I also spend a lot of time people watching.
Sherri: James Petrosky - people watching comes naturally to me. For many reasons. Not that I stare or anything, but even to watch interactions- as a teacher and instructor/ lifeguard as well as many other jobs with the public, it comes with the territory.
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.
Leaving for the hospital
Masks are required in the cancer ward, which will be a comfort when I come back for treatment
Outside the hospital
Masks: great for keeping out germs, terrible for moustaches
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.
One of the places that claims to be Canada's Smallest Jailhouse, Coboconk
I've visited a lot of locks, and have so many more to go. This one has a restaurant with pretty good fish and chips
At the marsh
A tiny tiny tiny little historic site in Tay Township, near Midland. This sign is most of the site, sadly
<figcaptionHuntsville sculpture forest
Huntsville sculpture forest
Huntsville sculpture forest
Hogg's Falls, Beaver Valley, near Thornbury
Eugenia Falls, Beaver Valley, near Thornbury
High Falls, Bracebridge
Port Sidney Falls, Port Sidney
A lock! Huntsville
Huntsville has a lot of beautiful mural reproductions of Tom Thomson and the Group of Seven's artwork. This is the one that I liked most as a photo with me in it (the painting is Northern River by Tom Thompson)
The Jack Pine. Nearly a religious experience
At the McMichael Canadian Art Collection
At the McMichael Canadian Art Collection
You guys gotta believe me this is a really good rock pile, totally worth the 3 hour drive
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.
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.
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.
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.
Tomorrow is the anniversary of Cycle 1, Day 1 of chemotherapy. And I don't have a lot to say about it that I haven't said already. It's a horrible medicine, but it's what's keeping me alive and going on adventures. At this point, there's simply no me without it, and that's just a fact I have no choice but to accept, and that's fine.
Last year, late at night, after the PICC had been inserted (one year anniversary today), after I'd had my little walk down to the breakwater and gazed lovingly into the void where either Wasaga Beach should be, or where the sun just departed from, I returned home and took these two pictures. Pictures I did not intend to share. Pictures just for me, so I could track how the disease and the treatment were affecting my body.
Honestly, a year later, I expected a much, much, more dramatic change. Chemo is one of those drugs that really scales with your bodyweight, so I know for a fact, from the exact same calibrated scale, that I have varied by about a kilogram this whole time (2.2lbs). But the photos match the scale. The change is largely in the hair, not the body.
From the comments
James Petrosky: For clarity, the photos with green hair and the blue shirt are from 2022, roughly 12 hours before first chemo. The photos with the cool Michael Myers shirt are from 2023.
Across Ontario there are several outcrops where you can see the precambrian-paleozoic nonconformity. One of these is approximately 3km West of Burleigh Falls, Ontario, on Peterborough Road 36.
A nonconformity is a missing part of the geological column where sedimentary rock was deposited on a crystalline igneous or metamorphic rocks. Here our igneous rocks are from the Grenville province of the Canadian Shield, and our middle Ordovician rocks are from the Gull River and Shadow Lake formations (part of the Simcoe group). The point of contact between these rocks represents approximately 550 million years of missing geological history, the Ordovician rocks are only 450 million years old.
I said I was going to give you coordinates for the site. After seeing it, and comparing it to what Google StreetView has from a few years ago, I'm not going to do that. Tourist erosion is a real problem in hobby geology. It shouldn't take long for anyone interested to locate the outcrop with this information. If you find yourself there, please respect those who will come after you, and please don't be a nuisance to the people who live nearby.
Join me as I walk the length of the main dyke at Tiny Marsh. We see sandhill cranes, great blue herons, swans, some ducks and geese and a whole lot of frogs.
The first half, we talk about the wildlife, the marsh, and stories I have about these creatures. On the way back, we talk about Meg 2: The Trench and other magnificently stupid movies.
This is shot with a head mounted camera, so the camera moves a lot and is shakier than is idea.
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.
Outside Bala, Ontario, searching for its Bog Beast (visible in far background)
When I bought it, I thought it was a cat, I now realize it's a hamster. My first pets were a pair of hamsters, who's claws terrified me so much I barely held them. And now I have a cat who walks up and bites me for unknown feline reasons, we change so much
At Balm Beach, arcade, store and restaurant visible as bright lights
Recording videos at the marsh
Goose friend!
Suspect beaver (at Kirkfield lift lock)
Mystery door, Collingwood
Rainbow trout, Thornbury
Old historical rail bridge, Thornbury
A cool evening, down by the bay
Most antique shop booths are dragon's hoards of shiny things, thrown together. This one was a beautiful room (ft [Lilly]({tag}Lilly))
Is he looking at me?
State of the Moustache
Memento mori
At the restaurant in Balm Beach (I had what they called an Austin Cheese Steak, which i assume is a regular cheese steak with Texas grilling traditions. I have no idea, it was delicious though)
I'm stoned in some of these pictures, but not this one, no matter how it looks.
10/10, only note is that I wanted more giant octopus
I can tell the chemo really effected me because it's above 30C here, there's no shade for 2km, I've already been outside for half an hour, and I'm just comfortable.
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.
<figcaptionHuntsville sculpture forest
