Cancer Selfies

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!
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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.

Fake cancer cures

Its been a constant stream of fake medicine, weird new age bullshit ("energy healing"), natural nonsense and, the most frustrating to me, faith healers, for the past year. Mostly on Facebook ads, although genuinely a lot less than I expected, and while Facebook is really bad about taking down con artists, their block function seems to work in a very absolute way. I don't see a lot of objectionable cancer stuff on Facebook anymore.

On the wider internet, things are more dire. Google is terrible about letting you block dangerous advertisers, and the place I spend the second most time is YouTube. Google ads power much of the rest of the internet, too, making it often difficult to navigate.

Its all very frustrating, because even though some of these clowns might genuinely believe in what their doing (new agers and natural fanatics are generally in this camp), the whole lot of them get a lot of people killed. I devoted much of my adult life to scientific skepticism, which puts me, personally, in a good place when it comes to these people. I've seen their claims, often am familliar enough with their products to know if they've been properly tested, and if that testing reflected well on them (none of the things I listed pass these tests). And, if I don't know their products and claims, I have a strong network of people who I trust and who I can ask.

None of which helps the people who were not fortunate enough to be exposed to skepticism. Or those who grew up in the church, and think seeking out real medicine is equivalent to questioning their faith. Or people who's support group is made up of those well meaning frauds who still get people killed.

I want a call to action, to tell you to write your MPP/MLA to kick medical fraudsters out of the medical system, and your MP to put these con artists in jail. But their lobbies are far, far too powerful, because their lies are too profitable. The best I can reasonably hope for is that we can save a few of our most vulnerable from wasting their time, their money and, in the case of people like me, what little life they have left on dangerous charlatans.

The following was originally posted August 30, 2022

If your wondering how fast advertisements for nonsense natural remedies take over your feed, it's within hours (maybe quicker, I was at work and not paying full attention).

I've already blocked and reported a half dozen.

Right now I'm still in a position where I can laugh these off, block some scammers, and move on. If I start to break, someone please just point me at Science Based Medicine to set me straight again ❤️

VLog: August 19, 2023

A brief discussion about the consequences of the power being out

Looking back at announcement day

Friends, thank you for consistantly giving me an escape from a world dominated by existential terrors at every turn. Thank you for keeping me in cute animal photos through chemo and scans and dozens of blood draws. You made it easy to be hopeful when it was possible to be hopeful, and have helped me be peaceful, level and calm now that there's nothing to do but wait. Each and every one of you is fantastic, and while I may have been able to get this far without you, why would I ever want that?

Gone is the pain (literal and figurative) I felt when I wrote this, gone is the terror of the unknown. The horror remains, at least a little bit, but mostly what I feel on this anniversary is gratitude. Thanks for being there, and I sincerely hope you'll remain. It's going to be sad, but there'll be cats at least.

The following was originally posted August 19, 2022

Friends, this is not going to be a happy post. I understand if you take a pass, just know that you're all important to me, you brighten and give colour to my life, and that I love you all.

I've been diagnosed with cancer of the appendix. Its already spread to at least two other places. This is the source of the gut/abdominal/belly button pain I've been complaining about for a while. We've only suspected for just over two weeks. and only had it confirmed this week, so I don't know what the outlook is like, but I'm choosing to be hopeful.

Work friends, please keep this to yourselves. Work is the only place I can pretend things are normal right now and that is important to my mental health.

All friends, please don't tell me you're praying for me. That's often used as a passive aggressive threat towards atheists, and while I know you don't mean it that way, I'm already emotionally spent.

Again, you all mean the world to me, and the world is a better place having all you in it ❤

VLog: August 18, 2023

In search of the Bog Beast of Bala

VLog: August 17, 2023

I talk about the cricket