Cancer Selfies

Mortality and Hospice

September is a time of transition for us all. The seasons demand it of us. Our geese gather and leave us, hoping for warmer climates (or the open watering holes of southern Ontario). The leaves change as they die, so the trees as a whole may survive. And in that change, give us the colours of a perpetual sunset until the cold waters come and end it all in a sludgy, cold, slippery mess from which next year's leaves and berries and wonder all grow from. We may not all be there to see it, but its happened every year since the glacier's retreated and I see no reason why it wouldn't continue in my absence just as it has. Maybe with a bit more spice from climate change than we'd like, though.

I have been doing a video series on how weird a transitional splace hospice has been for me. Because it has truly been the strangest physical, mental and emotional places where I've spent any serious amount of time in. Its been a deeply special place, and, as the last few grains of sand in my hourglass empty, one I've been very glad to call home. Its been a gift to me and my family. But a deeply strange one. Some days its a regular apartment, which just so happens to be attached to a hospital, where your old sitcome friend (who always happeens to be a nurse) can bardge in any time to an appause track as they either solve the little problem you were having (usually an IV disconnect or reconnect) and be on their way. Sometimes, though, you're just trapped in a hospital room with no magic, where no amount of whimsy in the form of flowers and quishmallows and toys and pink flamingos and photos on the wall and children's colouring and the like can save it. Its still just sterile.

And those days, my friends, are the hardest ones. Because no one can breath life back into the space. Its just gone for a moment or a minute or longer. And I am ost without it. Its happened rarely, but some day the whole edifice willl colapse, bringing with it the joy I have found here. There will still exist joy obviously, the poodles and Thomasin still exist, but it will be lesser, different. It will be another stepping stone on the path towards my inevitable death. Which is inevitable, and not something I intend to run from at all.

Today there is joy. There is joy in hospice, so here I shall remain. But I must remember that the geese fly befroe the winter, not after the ice has frozen their ponds over. And I just need the wisdom to find that inflection point within my life.

September is a transition time for us all. After all.

The following was originally posted September 4, 2023

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.

Hair Style Lightning Round

A collection of hair styles I have chosen, and that the treatment has allowed for me.

• Centre is pre-diagnosis, pre-treatment, regular assed long hair
• North is bleached at Lilly's place, I'd have loved to wear it more than an hour, it wss fun
• North-East is the blue that was on the box. It didn't take
• East is the glorious green I got
• South-East is the green as the sun ravaged it and the chemo started to take holding
• South is the point where I shaved what remained
• South-West is the baby fuzz starting to grow back. It was very soft, wavy and provded no tempeature regulation. But it was summer, so it also provided no sun protectiuon.
• West was the straight bald i wore through most of my last chemo cycle. It was easier to keep the floor clean with a perminanly shedding cat that way.
• North-West is how it is now. The facial hair grew back in better and more mountin man than I could have ever hoped. I wish I could survive in part because I just want to see what it can do. The baby hair is back, soft as ever. I may not have won the lifespan lottery this go around, but I'm doing great for hair. And sometimes you take what you can get.

You have fine the joy when it comes to something like cancer. Once it has sapped all the joy, and I think it inevitibly will, that's your end. Or at least it will be mine. But I've been talking with the many faces of death, and I don't think we're ready quite yet.

*The following was originally posted September 3, 2023

I miss my long hair, and my green hair, and especially the few days it was blue hair. I did a thing I'd half heartedly wanted to do for a decade, and I'm glad I did. It's nice that not everything in my Facevook memories is an emotional timebomb I've got to work through.

The following was originally posted August 30, 2022

If the chemo is going to take my hair, I'm going to have fun with it first

From the Comments

James Petrosky: *it isn't a forgone conclusion that I'll lose my hair, and I'm pretty excited about this whole thing

Look-Back x2: Oncologist panic

Sitting here in the hospice in 2024 I don't think there's any other way this situation could have played out for me. I wasn't afraid to ask questions, or even the right questions, but I was so passive that I often didn't take the time to make sure I had the information part of informed conscent solidly figured out.

I did, eventually, get there. All my at home readings of reputible research and advice papers put out by reputible hospital networks got me the information I needed, it would have just been faster if I wasn't so shy and was willig to ask especially about weird bowel movements earlier.

The old mantra remains true, though, questions would not have changed the outcome.

The following was originally posted September 1, 2023

Looking back at this expremely anxious time in my life, the only thing that made sense was for the two teams to be working together in some way to improve my outcome. And both teams turned out great, the disease just had other plans.

The following was originally posted September 1, 2022

Given that there are fewer than 24 hours until I meet my oncologist, I'm going to go back to the CUTE ANIMAL PHOTOS well because holy fuck I have an anxiety disorder and I didn't understand anxiety could be so bad

The comments comtain dozens of posts featuring people's pets and wild animals

Emergency, again

Another day, another trip to emerg

From the comments

Grace Tomczak: At least you’re a cute seven.

Claire Ohrling: Grace Tomczak haha I came here to make the same joke 😄

Emergency

This photo is supposed to be with Winnie the Poo in White River, Ontario, halfway to the Manitoba border. The first leg of my grand cross country adventure.

This photo is instead in the hospital in Elliot Lake. The pain is immense. I don't know what's wrong. I do know there is no trip.

From the comments

Grace Tomczak: At least you’re a cute seven.

Claire Ohrling: Grace Tomczak haha I came here to make the same joke 😄

Body Horror

I think that scene in Annihilation where the guys intestines are writhing like snakes captures how I feel a lot of the time

From the comments

James Petrosky: Cancer is living body horror. There are constant new and grotesque violations. You always know the ultimate cause (those immortal detector cells), but your never sure what devious plot they're on now.

You know how the movie ends, and what the last few minutes look like. But you'll never predict that third act bear monster / the loss of the ability to feel comfortable when your sitting or lying down. The violations do not stop.

Heat Wave

It's a heat wave! I'm using a heat pad on high! What a wondrous time to be alive!

From the comments

James Petrosky: No, I don't have AC. I don't even have particularly good fans (job for tomorrow). But at least I'm on the edge of the hear wave, and we're down to 25, which is what I kept my apartment at all winter

The return of belly button pain

I'm experiencing an awful lot of belly button pain for someone who hasn't had one in over a year

From the comments

Mica Richard: A phantom navel could be a good Halloween cocktail

James Petrosky: Mica Richard features an olive without pimento

Cancer is Biphobic

As part of my pain prevention and management routine, I have to sit like a regular person at all times. Which means that in addition to a handful of other very bad things, cancer is also fucking biphobic.

From the comments

James Petrosky: This is a very silly joke that is also 100% factual

Ëmmy Smäll: welp I just almost horked the water I was drinking out my nose

Justine Wiesinger: Oh no, with your feet on the FLOOR? 🤢 I have been struggling with this over the past week

James Petrosky: Justine Wiesinger I can't even cross my legs for very long (but also can't make myself stop doing it)

Justine Wiesinger: James Petrosky Yes all week I felt unable to do crafts like cross stitching because I couldn't pull my feet up onto the couch so what's the POINT

Justine Wiesinger: UNCOZY ❎DISRESPECTFUL TO QUEER CULTURE 👎👎

Mareile S. Håland: The dreadfullest cancer fact yet 😮 /lh

Christa Pace Martin: That’s just rude.

Stefanie Culp: That’s just disrespectful of it and during pride month too, how dare

Ross Keith: I fucking knew it

**Rebecca Liddle Blair: Nooooooo…whyyyyy… I have spine issues that also don’t like that I bi-pretzel, but I do it anyway!

Sarah Baggs: Ugh when I’ve hurt my hip and need to sit up straight to avoid the pain it is like TORTURE

Reflecting on HIPEC

There are a lot of times in my life where things didn't go quite as planned. Today is the one year anniversary of she they went nearly as far from planned as possible. This day in 2023 was HIPEC surgery day.

I expected to be a lot more emotional about it. Expected the past week to bring some dread or excitement, but instead I've only broken routine for my little adventure yesterday. I want to say I got the buttertarts or lemon squares to celebrate, to mark time, but I wasn't thinking of any of that.

So here's to surgery day, the day we all lost hope for a cure, or long term treatment, and the start of when I stopped letting that bother me.

The following was originally posted June 9, 2023

Months ago I expressed my distaste for the cancer as a battle or fight metaphor. It might represent some people well, especially those with stage 1 illness, but it doesn't reflect my experience. For me, cancer has been a seige. And today, friends, the relief forces have arrived, and we're going to do our damndest to break that seige. We done everything we can to ensure success, and now it's all in the hands of the fates.

The variaties of lower back pain.

Another day, another exciting new pelvic/lower back pain preventing me from living my life (doing laundry, going to Blind River to try a chip truck)

From the comments

James Petrosky: T3s work on most pain pretty well, except this one. Nothing works on this one. Maybe a round of chemo will, but that's just trading bad symptoms for bad side effects.

A stronger pain killer might help, but history tells me I'd be too stoned to drive all the time, and I'm already feeling pretty trapped at home.

James Petrosky: I had a few more days worth of pride posts planned, but I don't have the energy anymore. I hope everyone has a good time, and that bigots get some sense knocked into them by a giant magic goose, but that's all for me.

Northeast Cancer Centre

When I moved a month ago, I left my old health region. This means finding a new primary care physician, palliative care physician and oncologist. I'm still working on a GP and waiting on a referral for a local palliative care doctor, but today I met my new oncologist.

In the past month, my symptoms have gotten noticibly worse. The pain in my kidney is more severe, and more common, and the other one has joined in, too. Plus, lots of random pelvic pains. Codine is controlling it well, but this is the first time since diagnosis I've needed regular pain control.

We'll be restarting chemo as soon as we can because of this. There are tests and paperwork to get out of the way first, but my doctor would like to have it going in the next couple weeks. Between the first and second rounds of chemotherapy, I had six months (most of which were spent recovering from surgery), this time I'll have around two. I'm doing well, given the situation, and am in good spirits, but the disease is progressing, it cannot be stopped, and the outcome has never been in question.

And as a way to show how completely this experience has changed me, I confidently, and completely without anxiety, asked how much time I have left. And the answer didn't phase me. Human beings can adjust to, and become skilled at, anything.

A year.

Which is an upgrade over what I thought this morning.

From the comments

James Petrosky:I share a lot, but also don't talk about a bunch of things. January and February were very hard for me, having a birthday that was poorly marked (chemo's fault, it was celebrated eventually) when you know, with low but significant, certainty that it will be your last is one of the most difficult things I've ever had to do. I'm not excited about doing it again.

No, you (everyone) couldn't have done anything to help, or I'd have asked. I almost never talk about it, but the cancer centre does have some mental health support. I've made extensive use so far.

The weird way pain manifests

I think, through culture and experience, we all understand that cancer brings a lot of pain. Friends, they don't lie, but I've never seen anyone talk about how weird that pain can be.

This message brought to you by my body interpreting skin stretching, of the regular sort that might happen if you were laying on your side, as somewhere between discomfort and pain.

From the comments

JamesP: In some people and cases, constipation can register as back or hip pain. For me, it's every time I need to use the washroom.

JamesP And, just for fun, I get random stabbing pains throughout my pelvic region. I suspect this is an impacted nerve. It can happen any time, but generally comes in clusters and usually with other sources of pain

Christine Otterman: I guess it's got to be an all around unnatural experience. It would be hard to not be suspicious of what it is and what it means. It's probably difficult to articulate, therefore no one talks about it!

Janet Dorion That sucks. I can't imagine. You are so strong!

James Petrosky It's a bad situation, but I'm usually feeling okay much of thday, although the evening is devoted to pain management so that I can enjoy the next day as much as possible.

Brennan Moline: Susan Sontag, in writing about her own cancer, once discussed how pain tests the limits of human language. That it becomes incredibly isolating because it's impossible to truly explain to someone else.

ADHD, Again

Anyone else find that opening and closing curtains is one of the most surprisingly mentally taxing things you do daily?

This post brought to you by ADHD

From the comments

James Petrosky: I have no choice here, my apartment faces the enterence and I have no desire to flash all the retired people, but at my last place I think I touched them once every few months, more to track the sun than anything else.

Boil water over!

After eight days the tap water is officially safe again!

From the comments

James Petrosky: Which is great for us, but a week is not a long term advisory, and at least 28 First Nations communities are still under long term (over one year) advisories. A week sucked, a month is unimaginable to me, and I have no words for what a long term advisory would be like.

Boil Water day five

We're on day five of a boil water order and it's rough on regular people, but between my kidney and the cancer I need to drink so much more, and the whole process is exhausting.

From the comments

James Petrosky: 5 days is a lot, but it's also fucking nothing. Neskantaga First Nation has been doing it for 29 years pretty much only because we suck and are racist.

Partial Bowel Obstruction, Redux (Forshaodowing)

Was up half the night trying to decide if I should visit the hospital because of a new, exciting and particularly spicy pain. Thankfully I don't remember much, but I fell asleep eventually and woke up with regular levels of pain.

From the comments

James Petrosky: It didn't feel anything like another obstruction. That was distinct. I think it sometimes just really sucks to be conscious for no good reason.

James Petrosky:I have chores and hotels to book and I just can't get enough give a fuck going to do any of it. If I don't soon I'm going to ruin my whole trip and I just can't care.

A day off with Thomasin

We've given up on unpacking for today, and are going to take tomorrow off to lay around and do nothing. We've earned it.

From the comments

Brennan Moline: How is Thomasin adjusting? She looks comfortable

James Petrosky: Brennan Moline she was overwhelmed the first day of packing, and at the hotel during travel, but has been excitedly exploring and plotting escape into the hallway for days now. She's probably doing better than I am James PetroskyIt helps that the bed and bedding are the same, and she still has her cat tree. The constants are safety when overwhelmed

Unpacking

It's hard to unpack when whenever you sit down, anywhere, a cat is almost immediately on your lap.

From the comments

James Petrosky: It happened again

Sadie

Did a lot of work today, and am very happy with progress, but the best part of the day was the 15 seconds I got to pet a golden retriever

From the comments

James Petrosky: His (her?) name is Sadie and I've been trying to pet them for years, but they've always preferred to play with the poodles, and honestly I can't blame them