Cancer Selfies

VLog: September 1st, 2023

Balm Beach weekend part 1 (dinner at the beach).

Revisiting Alcohol

<! --I reflected on this on September 1, 2024 -->

I poured out everything that remained of my alcohol collection today. I've known my body can't really take it anymore for over a year, and by surgery time knew with medical certainty that there was no outcome that would make it safe for me to have. I think part of me was still hoping for a reckless glass of celebratory scotch that was never going to happen. And now cannot happen.

You mourn life and normalcy in fits and starts. I haven't felt much since I got home in July. But it's September now, the tourists are leaving, the season is changing, and the geese are practising Vs. It's a reflective sort of time for me, and pouring it all out hits a much more raw nerve than I expected.

From the comments

James Petrosky: I've definitely mentioned it before, but it fits well here.

After academia and I had a pretty rough falling out (undiagnosed, dangerously wrongly treated bipolar disorder played a part), I had no idea what to do with myself. I spent a couple years temping and working retail, and knew that wasn't for me. But it taught me I liked people. And like a lot of hipster types at the time (2012-2014jsh), I got into making drinks.

Over the next few years I made all the drinks at gatherings and family events, and really enjoyed the experimentation and adventure of it.

I started work at my final employer in 2015, as a temp. I didn't know if I was going to make another try and grad school, finish the courses I needed for a geology designation, or try my hand at mixology school. And becoming a bartender was more than just a passing fancy (although it may have been just a bipolar/ADHD fancy).

Obviously I didn't do it, and not regret that decision. But getting rid of these bottles is getting rid of something that was once very important to me.

James Petrosky: I've written a lot of morbid and depressing shit over the last year, and this may be the first time it's pure mourning, without a hint of anxiety, terror or anticipation thrown in.

James Petrosky: (I actually kept a full bottle of pisco I bought in Peru, I don't know why, if I haven't drank it in ten years, I probably never was going to, but some things are too hard

Ryan: Man, of all the things you’ve posted, this has been the most . . . like really reckoning with things, at least as I’m parsing it.

I know you’re not a person of faith, and I am not one any longer, but the feeling I have toward you in this moment is one I only have words for in a faith based context, and I don’t know how to say them in a way that doesn’t rely on a fantasy. But I’m going to try here, so please forgive any weird phrasing:

I feel the echo of your heart within me.

James Petrosky: Ryan I've tried and failed three times at a response, so instead all just say thank you.

Ryan McGill: James Petrosky it’s all good, friend. I find myself in the same situation with many of your posts, but this one connected in a way that I couldn’t just leave a reaction. And with what we know about human memory, I think I’m going to carry it with just about every glass I raise.

James Petrosky: The fucking wild thing is that I actually wanted to talk about being off work for a year, because we're 6 hours away from that. But it's recycling this week, and decided I wanted to dust the bottle shelf. And here we are. Nothing is ever planned, things just happen because the universe is chaotic and impenetrable and beautiful.

James Petrosky: Because I'm having Something Of A Day, I went and broke into my forbidden song vault and listened to Kettering by The Antlers. And that was very dumb of me. The vault has been resealed.

My Multi Word Header

Fake medicine

I reflected on this on September 1, 2024

I was writing a post about the evils of complementary and alternative medicine and my power went out 😮

Coincidence? I mean, yeah, probably, those fiends are too busy finding cancer patients to take advantage of

From the comments

James Petrosky: Got an issue with my fundamental point here? I encourage you to go do some good quality research. I'm not available to argue about to ❤️

James Petrosky: If it makes you feel better, new agers and faith healers are similarly problematic. Also not debating this.

Ron: Not enough is made of the fact that people who push that crap are actively preventing people who need real help from getting it in time to matter. Evil indeed.

James Petrosky: Ron I was reading my memories and it apparently took less than a day for the algorithm to serve up this kind of stuff to me. Skepticism has long been one of my interests, so I'm okay, but not everyone would be

Look-Back: Oncologist panic, Death as a friend

I reflected on this on September 1, 2024

I was so anxious, yet excited, to meet my oncologist the next day. We were going to get a real prognosis, rather than trying to get one sort of doctor to give me expertiese from another's specialzation. We were going to leran about treatment planning, about return to work timelines. We were going to learn how to traverse the death crypt that is the cancer ththat resided in me, and get back into the sun, where I could laugh and picnic with facncy cheeses and pickles and little sandwiches.

Of course, cancer is no more a horseman of the apocalypse, no seahorse waiting to destry all. And you're just as likely to run into that death, embracing as friends, in the brightest sun as you are darkest cave.

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

VLog: August 31th, 2023

Balm Beach music night.

VLog: August 30th, 2023

Exhaustion is hard

The two oncologists

September first of last year was the first time I interacted with an oncologist. I did not understand what it meant to have two seperate teamns at this point. Was it a second opinion? Did I have to pick one or the other? I don't think what actually happened ever really occured to me, I was so profoundly ignorant that I didn't even know what questions to ask (even though I hadn't yet had a chance to ask the important questions - what is my treatment plan (a phrasing I've only learned recently), what is my prognosis, what does the next month, six months, year, etc., look like for me (and even if it maked sense to ask about some of those timeframes).

I had two oncology teams working together. They knew about each other from day one (even if communication was sometimes slow between them), they were working together (or at least towards a shared purpose). It was a tag-team treatment plan, two courses of chemotherapy then surgery, the whole time. I needed to give positive, written consent at every stage, but other than saying "yes, I want to undertake this treatment, knowing that it has risks, but is also the standard of care and the best/only chance to have anything approaching a normal lifespan. I had little say in things, ie I didn't have to pick one plan or another, because, again, there was always just the one plan.

I wish all this had been made clearer to me back then. Not the specifics about treatment, obviously, or even prognosis, because you actually have to have met your oncologist to learn that information. But if someone had said "you're going to be seeing a doctor in Barrie and a surgeon in Toronto, they'll be working together with you for your treatment" then a lot of confusion would have been evaporated, and I really couldn't stand the extra stress at that point in my life. But maybe it was obvious to most people that they'd work together on a unified plan. I've never cared for hospital dramas, I don't see this sort of thing in media very often.

Now, I sit on the other side of that treatment plan. The chemo part was extremely successful, shrinking the CT visible tumors and getting me to surgery, and if not for the pesky unknown prostate tumor, surgery was on track to be successful as well (its impossible to know, but from the surgeon's report everything else they found could have been attempted, there are still fail states down that path, but that is also where all the success states are located). Sometime soon I'll have to restart chemotherapy, which I have complex feelings about, but at least none of those feelings are the confusion I felt in 2022.

The following was originally posted August 30, 2022

Good news! I have appointments with two different oncologists!

Bad news! I have appointments with two different oncologists.

VLog: August 29th, 2023

Lonliness is hard.

VLog: August 28th, 2023

I visited Collingwood and Thornburry

VLog: August 27th, 2023

I took a few days off, its in part because of mania

Being advertised to by my own suffering

Facebook really, really wants me to use a cheesy animation effect on this image. And yeah, fair, it looks better on this photo than any other I've tried. But this is from the day after my surgery was cancled.

So great work, Zucc, for reminding me of one of the two worst days in my life, 2-3 times a day for the last week.

(I'm fine and am more upset I can't demand someone at Facebook justify this crime than I am about the reminder itself)

From the comments

James Petrosky: The post this photo came with had the words "inoperable" and "tumor" in it, if I was making a list of words to blacklist, those would be on it. Those would have been on it in 2019.

James Petrosky: I need you all to know that the morbid part of my sense of humour, which has long held a strong minority stake, thinks this shit is funny as hell. I am unbothered. (I really would like to make a project manager feel uncomfortable about it for around five minutes, though)

Trading normalicy like currency

I have a few ideas that I don't see a lot in cancer circles. Nothing off the deep end like dubious treatments, faith healing or denial (but then those ideas are everywhere across the internet, you'd have to try to avoid them). Simple things, analogies. My favourite is cancer as a siege, rather than a battle. When I pass, I won't be because I lost the battle to cancer, I lost that battle up to a decade ago, years before most of you knew me, and well before anyone would ever do any screening (possibly, although not likely, before my oncologist was even a doctor). Cancer is a well provisioned army, giving seige to your body. Without help, you will sucumb. There is no dishonour in that (which I feel is an unintended implication of losing a battle, you may differ, that's fine).

I think this is the first time my second favourite analogy comes up (it comes up in the comments, not the post). I think it applies to any big change in your life, at least so long as you can accept the implications piecemeal. Those days are completely blocked off to me, they're just a haze of belly button pain, a new, sharp, existential terror, anxiety and a complete lack of sleep. I don't remember what it all felt like, but I do know that I needed those pain killers, and that by needing them I couldn't do a huge part of my job anymore. And that put a timeline on telling my boss about the situation, which put a timeline on letting HR know, etc.. And I know that doing preparation for a colonoscopy at 35, in a maintenance shop with several middle aged men, was only going to beg questions I did not yet want to answer. And that once you've taken a couple of days off for medical testing, even the youngest guys start to get wise.

Every medication, test and appointment brought more scrutiny, and how could they not? People care, they're curious. And when all you want to do is have eight hours a day where you can pretend everything is normal, each bit of that attention spoils your ability to pretend. Until you can't, and you tell everyone how dire the situation really is.

I am glad to be well beyond this stage. I love the currency metaphor for the period in my life between diagnosis and chemotherapy. But I'm beyond that chaotic mess of emotions and personal ignorance. I cannot say I am happy to know everything I've learned in a year, but as best I can remember not knowing anything was much, much worse. Its come up a few times in conversation, but we all genuinely wondered if I'd make it to 2023. And that uncertainty felt much worse to me than knowing that I have between 400-600 days.

The following was originally posted August 26, 2022

Good news! I have something for the abdominal pain now.

Good news! It works really well!

Bad news! I have about the same tolerance for T3s as I do for everything else, so that's fun.

From the comments

James Petrosky: This would be fine if they were for home, but less so for driving and work (especially because the position I'm physically in for driving is really bad for pain.)

James Petrosky: It's great to feel at home in my body for the first time in a year, but the cost is a little bit more of the normal I'm coming to miss more and more every day.

James Petrosky: I've wanted to make posts about "the thing they don't tell you about cancer is" with a thousand little adjustments (buying a new large bottle of extra strength Tylenol every trip to the grocery store, when normally one a year was a lot) but the reality is that you really cling to everything that still feels normal, knowing that many of them have a time limit (the big one for me is work, I think I probably have 2-4 weeks before I go on leave, and I'm not ready to recon with that yet). Today I learned that my reaction to T3s means that I have to give up forklift driving and height work or be risk fairly severe pain. That is a lot of normal lost, and a lot of either lying about why or filling people in on the situation.

What they don't tell you is that normal is the currency you pay along the road to treatment.

And every time you make a payment, the part of your brain you can take a mental break from it in shrinks. Until all that's left is existential terror and exhaustion, from the disease and from the side effects.

That's pretty fucking bleak, I'm not feeling that trash tonight. I have felt that trash, I drove 6 hours alone in pain knowing every second of the trip that the reward I was looking forward to was breaking my parents' hearts with this fucking news. Nothing will ever feel like that.

I'm alright tonight. A little bit high on T3s. Watching math videos and playing with my stupid electronic toy instruments. If I was healthy right now, I'd be doing exactly the same (except it would be cannibis)

Its funny how some things change

It's adorable that I once thought this was oversharing. And maybe it was, but it's got nothing on walking all you all's through the surgical plan in June.

In my defense here, I didn't start writing the diary until September 4th, and my first posts actually talking about medical stuff weren't until the 13th or 14th

The following was originally posted August 25, 2022

Oversharing warning!
.
.
.
Whoda thought that the worst part about the colonoscopy (well, so far, material was sent out for further testing) would be that my sinuses are all plugged and painful

VLog: August 24, 2023

I really overdid it yesterday, and it will happen again.

VLog: August 23, 2023

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

VLog: August 22, 2023 - A little more

Short discussion about how you can feel great and healthy while still knowing your dying, and that that situation is actually normal, about symptoms and side effects, and planning around them, and about how there's always laundry to do.

VLog: August 22, 2023

Recovery is going surprisingly well

VLog: August 21, 2023

A very exciting laundry day

I'm still bad at selfies

I'm 36 now, and my technical selfie abilities have certianly improved, a year of constant practice will do that to you. But more importantly, my comfort with taking my own picture (and having my picture taken) has increased dramatically.

I remember when I was in university, not wanting to be in any of my photos because "why would anyone want to look at me, they want to look at those cool rocks / buildings / geese / whatever. And I wasn't wrong, you should be taking those pictures, too. But I wasn't right. Not in a way that mattered. Its important to appear full of joy in photos, because that is what those who love you want to see. Unless its your job, you aren't going to take a groundbreaking photo of Machu Picchu, but only you and your friends can take one with you and that wonder in the same frame.

The two photos were taken in the same spot, facing the same way. When I said I was bad at selfies, I meant it, it would be months before I found the mirror setting and turned it off.

The following was originally posted August 21, 2022

(This was written on September 4th, 2022)

Back at home after Barrie trip, at the Balm Beach breakwater. Look, I'm 35, I know I'm bad at selfies, and I would normally only share the really good ones. But that isn't what this album is about.

VLog: August 20, 2023

Have I talked about this blog project before? Because its going well now.