Cancer Selfies

Sep 13, 2024

In This Moment

In This Moment

In hospice, most days are not easy. There's a parade of pills, injections, infusions and pumps that have to be gone through to maintain the balance of health that is visible from outside the walls. It is the hard work the medical staff constantly do so that I can be as joyful about the little things I still, happily, get to experience.

And sometimes I need a stronger reminder. And today, I need an extra strong reminder. Which, happily, I have in the form of Healey and Balm Beach.

Healey, the only place in the whole oblate spheriod that's ever had the fortune of being home. A place where a railway meets a bay on a lake, where trains traveling from east or west light up the land and water in dramatic effect, passing each night. Where the full moon turns the gently rippling water into billions and billions of fish scales, seperating the millions of fireflies stuck in the sky from the cold dark where the scaled ones really live. The place I like to swim, to campfire, to watch the sun silently set, night after night, as I do here, in hospice.

The home to the last of my railway demigods, totems to a telegraph age long gone by, replaced by fiber and reliability. Replaced Healey. There's no where like it, yet everywhere is or could be. It's just my spot.

You shouldn't visit, there's nothing but ghosts left, and they're not you ghosts to play with. Balm Beach is much more inviting, has a similar sort of specialness to me, but in a sharable sort of way. Its ghosts are inviting, at least during the summer months, so you have a little time left to acquaint yourselves with them. It would be more rewarding, try yourself the brisket poutine and a Wasaga Beach Cerveza, it comes with a recommendation from the living James, too.

Scrap-Book Post

Sep 08, 2024

Tiny Marsh (Scrapbook)

Tiny Marsh

Tiny Marsh was my quiet piece of tranquility (except during hunting season) for near seven years. The Pond was round, crossed by two intersecting dikes, with a path they covered most of the circumference. Part of the circumference path had a boardwalk and lookouts. It was one of those perfect places in the world, maybe it could be improved, theoretically, but some of the real magic or the place would be lost in the transaction.

Tiny Marsh, more than any other place in southern Ontario is home to me, on an emotional level. It's where I'd go for a walk to clear my head (frequently after a unnecessarily convoluted drive to get there, because sometimes your head just needs that much of a clearcut). I recorded dozens of videos there, and until the Hospice videos started coming out was by far the most emotionally honest recording there vs home or my parents' place.

It's special. It contains real magic, the sort I've chased my whole life. It's not just the geese (although it is absolutely the geese, and their water fowl friends).

Around the east side, it has a small bunch of feral apples. Not the tastiest apples you've ever had for sure, but after all the walking you've done up to this point, they're exactly what you want. Round the west side there are lookouts, and a groundhog mountain (hill? wiser men have debated this). Sometimes you even see the little critters. But in the fall, what you do see are cascades of leopard frogs, bounding away from you with every step you take. If you're quick, maybe you can catch one, but why? Let them flow like water across the path, away from you in all directions. It's more beautiful this way.

We haven't even talked the turtles, foxes, rabbits, turkeys (and other land fowl). Or the green heron, strangest bird I've ever seen with my own eyes. We discussed swans, but not swans in the spring, singing to each other, or in the fall, calling out and learning to take off for their preposterous flights. We haven't talked the dark passages through the trees carved out by the paths, the strange bridges, drainage ditches, the carp and bass (maybe, I'm only good at identifying caught fish), the cat tails, reeds and sedges.

Tiny Marsh is a place of wild magics. I cannot share a story about it because they're all beautiful, but they bleed together. Like many things, sharing the details would spoil the whole. So I'll leave the exploration of these spaces up to you. Just be kind to the spaces, and talk with the geese. They love that.

Scrap-Book Post

Aug 17, 2024

Fed is Best: The Taco Bell Quest

️Fed is Best: The Taco Bell Quest

I maintained my weight during my full course of my chemotherapy treatment. From September 2022 until this spring, I fluctuated 2kg around a stable average. I am genuinely proud of this, and credit much of my end game physical resilience to this fact.

Lilly introduced me to the wonders of Taco Bell, the kind of wonderful place where ordering one of everything is possible, fun and not too outrageous (even if I never did it). The kind of place where those life giving calories are easy to eat. There were other fast food restaurants that I went to more, that contributed more to my stability, but Taco Bell was special.

Our two nearest locations were about a half hour away, which is the perfect length for one of those conversations I only seem to be have on road trips. We'd always get the same things (Delux Box + Crunchwrap Supreme for me, Taco Bell leftovers do great in a toaster oven)., but always talk the options.

We went to real restaurants, too.. More sushi than I can recall, pho, wings and everything we could find in the area, but it's the Taco Bell, and the little adventures it required, that is the strongest, most joyful of the mundane memories I call back on when the cancer pain strikes.

The nearest Taco Bell is in a mall in Sudbury. Two hours away. A doable distance, but it would never work with my nasal tube. I'm forever cut off, but the memory of food and friends is more than strong enough to keep me going

Scrap-Book Post

Apr 26, 2024

Lying in bed

It's hard when you're condition makes you need to lie down so much that lying down itself is uncomfortable

From the comments

James Petrosky: Starting with chemo, I've spent 12 days mostly in bed (including one night in a gurney that was really bad). But I just don't have energy

Apr 25, 2024

Moving Day! Part 1

We're on the move!

From the comments

James Petrosky: *Thomasin is in a carrier when we're actually on the move

**Stefanie Culp: What a solid navigator!

Sarah Marie Yurkiw: I hope it all goes very well.

Tu Biederman: Thomasin is SO CUTE I want to cry

Beverley Singer: She looks like she’s enjoying the ride.

James Petrosky: Beverley Singer she's traveling much better than I expected

Brennan Moline: So much trust in you ❤️

Ryan McGill: This is a GORGEOUS picture.

Apr 20, 2024

Apr 18, 2024

Apr 18, 2024

Partial Bowel Obstruction Part 6: Hydromorphone

Not sure if I'm more tired of the pain or being extremely high all the time.

From the comments

James Petrosky: Someone in the room has decided that we would all love to hear their country music. I made sure to pack multiple pairs of headphones so I wouldn't accidentally expose anyone to dinosaur podcasts. I'm extremely frustrated but unable to do anything about it

Apr 18, 2024

Partial Bowel Obstruction Part 5: Still in Georgian Bay General

Not sure if I'm more tired of the pain or being extremely high all the time.

From the comments

James Petrosky: Someone in the room has decided that we would all love to hear their country music. I made sure to pack multiple pairs of headphones so I wouldn't accidentally expose anyone to dinosaur podcasts. I'm extremely frustrated but unable to do anything about it

Apr 16, 2024

Partial Bowel Obstruction Part 4: Ice Cream

It's not all bad, my doctor's ordered full fluids lunch included a doctor's ordered vanilla ice cream

From the Comments

James Petrosky:And I got tea! Coffee this morning was pretty disappointing. I should have tea after meals more, I always really enjoy it in hospitals

James Petrosky: Ron Bedison I'll get into the habbit for a few weeks at a time, then go visit someone or something else to break the cycle, and forget I was doing it. Before this round of chemo, I was having tea and cookies most days in an attempt to eat 5 smaller meals. Chemo ruined that one.

Becca Simmons: My more rural family always drink coffee after a meal. Like, always. It's honestly really nice and idk why I don't do it except around them

James Petrosky: Becca Simmons my parents do the same, and the way they make coffee it would be so easy to make a cup of tea, too, but I never ask. It's a nice little ritual, especially if you pick your deserts to go well with coffee

Apr 15, 2024

Partial Bowel Obstruction Part 3: NG Tube

I'm not having the best day

From the comments

James Petrosky: I had the tube after surgery. The tube was my least favourite part of my time in hospital post surgery. I don't think I've ever agreed to something I wanted less than the tube this time

Mica Richard: At least you're a cute elephant? Seriously though feel better ❤️

Apr 14, 2024

Partial Bowel Obstruction Part 2

Last night, at around 9PM, I ate a slice of pizza. By the time I was done eating, I knew something was very wrong. My whole abdomen hurt with an intensity only beaten by my pre diagnosis cancer. I should have gone to the ER at this point, but went to sleep instead.

I woke up in still significant, but much reduced, pain and knew I had to go to the ER. I was reasonably sure that what was wrong with me was a bowel obstruction. Tumors along the intestine are a common cause, and unfortunately I have those.

It was a partial bowel obstruction. The doctor knew it as soon as he read my history. Unfortunately proving it with tests took the whole day.

I've been admitted, hopefully not for too long. Since my obstruction is partial, just letting my bowels do their thing, while controlling pain and keeping me hydrated, under observation, might work. I haven't been spoken with about other options yet.

Apr 14, 2024

Partial Bowel Obstruction Part 1: ER Visit

Guess who's been in the ER all morning! When I finally get out of here I need to pick up a new laser pointer and some catnip because it was that friggin pizza that did it to me

From the Comments

James Petrosky: No idea what's wrong yet, should have realistically come in last night but I was too tired to make decisions. Have had an xray or two.

James Petrosky: I've been between 5-8 pain for 16 hours now and that's getting a bit exhausting

Mareile S. Håland: Dr Thomasin MD! 😮 She tried to warn you!

Apr 13, 2024

Hindsight Pizza

I made a pizza and Thomasin sat on me and now my pizza is cold and still largely uneaten. Cat law can be cruel

From the comments

James Petrosky: It doesn't make sense, it was Hawaiian, and lots of people may not like it, but it's her favourite. Normally the play would be to jump on me and steal a whole slice from the plate

James Petrosky: I can't even call her a criminal, she's being a law abiding citizen

Apr 13, 2024

Chemo course three over

Cycle 12, Day 5

This one collects a whole month of photos.

I'm glad this round of treatment is done. I'm exhausted, I'm so sick of feeling sick all the time. It feels like the side effects (best case scenario, side effects) never really leave. I'm so run down. I need a break - a real break. And I kind of get one.

I feel good this afternoon, not great, but good. I had something called hydration yesterday. For me, it's a litre of IV saline over four hours. Hydration keeps me up all night, because I need to use the bathroom. The need to use the bathroom keeps me on the edge of sleep. Last night was all nightmares. This afternoon, I've recovered. I'm tired, but I went grocery shopping.

The break I get is from chemotherapy. I need a break from it, my body needs to recover. If I don't take a break, my quality of life will get too low and, eventually, I'll refuse treatment. I want a long break. Last time I had roughly six months. My oncologist doesn't want me to take that long. Every day I'm not receiving treatment, I'm losing ground to the cancer. It's the worst optimization problem I've ever had to think about.

I talk to my current oncologist for likely the last time in mid May. It'll take a few weeks to get me fully transfered to an oncologist in Sudbury. And a few more weeks after that to schedule treatment. That's likely what my break looks like. The six month break did very little to reduce the intensity of the side effects I was feeling. It was almost as if no time had passed. I've had a hard time making myself go to treatment for the last few months. I think I'm likely to refuse further treatment before the cancer spreads somewhere serious. I'm not there yet, though.

I don't get a break from life, though. I don't have nearly as much as I used to left, and I'm going to get rid of even more, but I packing is still exhausting. Now that I'm off chemo, I'm hoping I recover some of the energy I used to have so I can get stuff done.

At the zoo

We look silly, but the hippo looks great

Home after chemo

Chemo suite, cycle 11

At the marsh

Best room at the junk store

Goderich, Ontario

Goderich, Ontario

Goderich, Ontario

Final visit with my oncologist

Got my medicine!

After cycle 12

From the comments

James Petrosky: My hair hasn't started to come back yet, but the facial hair really has. I'll take the small victories, even if the texture is different than it used to be

Apr 12, 2024

Moving Anxiety

Not even past the main chemo side effects and already consumed by moving anxiety. I coulda used a day, you know?

From the Comments

James Petrosky: Not looking for help quite yet, I'm going to do another purge pass first.

James Petrosky: Wish I hadn't been talked into hydration, it keeps the treatment train going until Sunday and I don't have the mental fortitude (but it's doctor's recommendations, so I'll try)

Apr 09, 2024

Finished Chemotherapy

I'm home from the cancer centre. While I still have the bottle for the rest of the week, this is the end of this treatment series. It's the last time I'll visit the cancer centre. I have one final followup appointment before I transfer to a new oncologist.

I thought about ringing the bell as I left, and absolutely would have been welcome to, but it didn't feel like treatment was over, because it'll never be over, and couldn't do it. If I get another break, I hope I'll take my chance.

I'm a sentimental person. I cannot describe the confusion of emotions I'm feeling. The cancer nurses are some of the kindest people I've ever met, I hate that my health necessitated our meeting, last year I was so ready to say my goodbyes and never see any of them again because I was going to live, and now, after another very hard round of chemo, a much more bittersweet goodbye, with the promise of a new chemo centre and more difficult rounds of treatment.

From the comments

James Petrosky: I very rarely think about the R word (not that one, but I guess also that one), but I am today, and it isn't easy. I wish I could articulate it all better. But it's impossible.

James Petrosky: Frankly I'm being dramatic for the fun of it, the word remission has no special power.

Holly Kay: Love you cousin!

Rebecca Liddle Blair: In the work I do, I am often meeting people on not their best days or times; still, I am grateful for the experience and the time together. I’m guessing the nurses and care professionals that worked with you probably feel that way about working with you as well. It’s a different kind of relationship with complicated feelings to go along with it.

Brennan Moline: I am also a deeply sentimental person, despite my best efforts to avoid it. My parents still tease me about how I cried when they got rid of our old fridge or old car. When I left for college, I cried in the bathroom, hard. Sentimentality always felt like a curse.

Brennan Moline:I don't know that it is, anymore. I don't know how you feel about sentimental moments, but the fact that human connection can be so strong that we can miss it before it's gone feels both deeply beautiful and deeply sad.

Brennan Moline:I'm sorry I made this about me (part of me wants to delete this comment), but I feel what you're saying

James Petrosky: Brennan Moline my new experience is ending an interaction with a friend, both knowing it's the last time. My knew surreal experience is knowing that this is a skill, and one I'm going to get fairly good at fairly quickly. So long as I'm only a little awkward about it, I hope we can focus on the beauty in a strange and terrible situation.

James Petrosky: The way society handles grief and related emotions has never really worked for me. And I didn't outright say it, but this is all partially about grief. And for me, talking about grief in a personal and largely secular/nonreligious way is very important. Which may not have been your intent, but it's how it was taken.

Brennan Moline: James Petrosky Absolutely agree.

Apr 09, 2024

Apr 08, 2024

Apr 08, 2024

Hydration Frustration

Trying to arrange four days of hydration (which I usually refuse, but my oncologist wants me to do this time) but they've changed how its done since I got it in January.

From the comments

James Petrosky: It used to be all homecare, but now I have to go into a clinic once a day and disconnect it myself at the end of the day. And presumably make a second trip to the clinic Sunday for them to take out the connection to my port.

James Petrosky: Friends, this is the only part of my care where I directly receive care from a private medical company. It's always the most frustrating and least human part of my treatment

Next → Page 1 of 6