Cancer Selfies

VLog: August 12, 2023

First time I mention the project you're reading right now

VLog: August 11, 2023

What my prognosis means, explained with geese

VLog: August 10, 2023

Its biopsy anniversary day!

Its my biopsy anniversary

Happy appendix biopsy day!

From the comments

James Petrosky: No big stuffed animal tea party this time. I bought pizza (sprung for the deep dish option) and am breaking out the hash I keep for special occasions. It'll be shark movies until I pass out, which won't be long because deep dish has so much cheese.

The biopsy was the single most painful thing I've ever experienced. I was at near maximum cancer pain, and had to hold an intensely painful position for around ten minutes while they went in through my back to get a sample from my appendix.

I had known for less than two weeks, as had my partner. My family had known for five days. I was very alone, very confused, and hopeless. But now lots of people I'll never have the joy to meet know, I'm very comfortable talking about everything, and I've never felt more supported.

The Cancerversary is a celebration of life. Biopsy day is a celebration of community (even if I didn't invite anyone but the cat to the party)

VLog: August 9, 2023

Another nothing day

VLog: August 8, 2023

Recovery is still so, so slow (again)

Touring Northern Ontario

Last Thursday, the 3rd, I met with my oncologist to plan when I'd restart treatment. My blood counts have never been particularly useful (even though I have advanced disease, they've never been above the cutoff point where we'd start to worry about them), but they're still lower than when I started treatment a year ago. The CT scan showed no new tumors in the scan area (I think head and legs are outside, and we know the pelvic area isn't imagable), including in lungs, liver, and bones. The existing appendix tumor remains, but is still around the size it was. It's difficult to image the diffuse tumor on the fatty layer that protects the abdominal organs, so there are still unknowns, but we've decided to delay our decision for a few months. This means they in late September and early October, I'll be doing the same round of tests again to see if I need treatment then. This is fantastic news for my incision, which will get the time to heal properly for sure now.

Over the weekend my partner and I traveled to Elliot Lake to attend a family reunion/baby shower in Espanola. Nearly everyone was there, including the enormous and adorable baby, and it was a fantastic time. I didn't realize how much more recovery I had to do, though, I've never been so tired from sitting in the shade all day.

This need for further recovery was repeated Sunday, when my partner and one or my brothers had a tourist day in and around Elliot Lake, and Monday at Science North. Eight months of treatment that saps your strength, followed by a surgery that steals your endurance, and two months of lying around trying not to harm an incision take nearly everything out of you. At least I have two more months to recover.

From the comments

James Petrosky: Anyways, this trip crossed The Atom, three trading posts and Science North off my todo list (which is a physical list on real paper in an actual notebook now (it has a dog in a doughnut on the cover). Meeting the baby was the purpose of the trip, but some light multitasking is good

I did not hold the baby because I was exhausted by the time I arrived and he likes to kick, which would have been bad for my incision. I hope I'll be able to rectify this soon

James Petrosky: I forgot to include the best dinosaur 😮

VLog: August 7, 2023

Recovery is still so, so slow (featuring the noisy cricket)

VLog: August 6, 2023

I'm very tired from the weekend's activities

VLog: August 5, 2023

Back in Northern Ontario for a baby shower/family reunion. Also, today is another anniversary.

VLog: August 4, 2023

Still excited about the good news

VLog: August 3, 2023

Good news from the oncologist

First Cancerversary Video

On the second of August, 2022, I learned that I had cancer. Its now the second of August, 2023, and I'm throwing my First Cancerversary party. A Cancerversary marks an important date in the progression of your illness, good or bad. Starting treatment, a surgical date, the date you went into remission, or the date the cancer came back are all things I think we should be celebrating. Not because a bad thing happened to us, but because we are still here to experience it.

My 1st Cancerversary is a celebration of joy, life and survival (with a touch of death thrown in as a treat for me).

There is a diary post to go with this video.

VLog: August 2, 2023

Why I have so many Squishmallows, also its my Cancerversary! I made a video, too.

First Cancerversary

One year ago today, I recieved a somewhat unexpected call from a surgian I'd been seeing about a mysterious, but monstrous, pain I'd been having on the right side of my abdomen. She had figured out the likely cause of my pain. It was cancer. I don't remember much else about that day, don't remember when doctors started using phrases like "stage four" and "high grade". I know that instead of waiting weeks for an ultrasound and months for a CT scan like I had for the diagnostic stage, I had both scheduled by the morning of the 5th to confirm what we now all feared to be true. August 2nd of that year was one of the worst days of my life (September 2nd of that year, when I first met my oncologist is also pretty bad, and June 9th of this year is worse).

August 2nd, 2023 is not like 2022. I've come much too far, underwent way too many unpleasant, painful and nauseating procedures, for that. I'm not here to tell a story I've already told, to dwell in much worse times. We're here to continue our stories. To live, be joyful, experience whimsy, to pet cats. To live in the best way the fates allow.

August 2nd, 2023 is my First Cancerversary. It's an idea that's been rattling around in my head since late June that was as fun to do as I hoped it might be. It's a celebration of life, of survival, and of joy. With the surgical recovery and a few other things going on in my life, I couldn't have a real party with human guests. But I've got big ideas for next year, because birthdays may feel less impressive and meaningful every year (they aren't though), marking time with cancer becomes exponentially more important and noteworthy with every passing year.

I don't want anyone to think this is just making the best of a bad situation, or that I'm putting on a smiling mask, or anything like that. I am genuinely joyous and excited about this. I did originally intend it as more of a silly joke than where I ended up, which is physically, mentally and emotionally exhausted after two long days of work. I'm left with a bittersweet feeling, which feels right, and feeling anything after over a decade of mental health struggles is fantastic.

From the comments

James Petrosky: Part of the reason this took so long is that there's a video, too. I'm happy with the result. I've been making short daily videos for a few weeks now, too. It's nice to have something to pass the time.

VLog: August 1, 2023

I have a surprise for you tomorrow tomorrow :)

Chemotherapy is life

July 31, 2023 - The tests are all done. There weren't that many, two passes through the CT scanner and three vials of blood (no urine, I sat uncomfortably for nothing). From these my oncologist (with the assistance of the radiologist, who I've never met but has had a tremendous impact on my life) will be able to tell how aggressively my cancer has bounced back in my four months without chemotherapy. A slow recovery for the cancer is obviously ideal, that gives me my best chance at a better quality of life, but that would also mean we could delay a few more weeks to allow the incision to heal more fully. But, in a less ideal case, we could start chemo sooner, and accept a longer healing period for the incision. The first case is preferable to me for many reasons, but since most of my physical restrictions were lifted last week when I saw my surgeon, most of my anxiety about the situation has lifted.

I recieved my diagnosis around this time last year. I barely remember any of it, things moved so fast, there was a new appointment every few days, I was in so much pain. Starting chemotherapy was terrifying. You can lie to yourself, pretend a bad thing isn't real, for a long time. It wasn't the CT scan, booked in days when before it took months. It wasn't the biopsy, which somehow hurt more than the tumor in my belly button. It wasn't the PICC installation surgery, even though seeing the little tube next to my heart on the scan screen was the grossest thing. Or even my first conversation with my oncologist. It was when they started the chemotherapy infusion that it became undeniable. Those chemicals are poison, the only excuse to deliver them is cancer. After then I had no choice but to live in the cold light of that fact.

A year gives us opportunity for a tremendous amount of change. Not always the way we want. Today, on the night of the final day of July, I am excited to restart chemotherapy, tobegin my third course of treatment. Excited like I was for Christmas when I was seven. Because I've fully accepted that, a year ago, I was given the death sentence of high grade, stage four appendectal cancer. I can never change that. I am at peace with it. The totality of it. But I still have time, and I won't get to everything I want (but wouldn't no matter what age I lived to), but through the scientastic magic of modern medicine, the chemotherapy will help me do more of those things.

I'm lucky, my mental health has so far allowed me to choose the sort of hope that I'd available to me. The call to despair hasn't been compelling most of this adventure. I rolled my eyes at radical acceptance when I was doing DBT years back, but it's helped free me from the perminant existential crisis my situation would otherwise require of me. I'm calm. I'm joyful. I'm at peace. I'm not putting on a show. I'm very excited for the next year, and for the medicine that's going to take me there.

From the comments

James Petrosky: At this point, I think the losses in cognative ability are probably perminant. I'm fine comversarionlly, was never particularly skilled with the written word and maybe even improved over treatment from practice, but I notice I'm worse at abstract thought. Last week I got so confused I couldn't recognize that a set was obviously countably infinite (more relatably mental arithmetic is much harder than it was a year ago, and I need pencil and paper for things I've been able to do in my head since grade 9). This sort of stuff has been a pretty important part of my sense of self since around grade 6, when math became fun, and this change causes me more mental friction than my own mortality these days. This, too, must be accepted, and perhaps the joys of pen and paper geometry rediscovered.

What I think of my chemotherapy

This is not about medicine as a discipline, talk to your medical oncologist for that. This is about how I relate to my treatment, and how that has changed as I've received it, and as the purpose of that treatment has changed.

Resuming chemotherapy

I've been off chemotherapy for nearly four months, and my treatment plan calls for three month courses of chemo followed by three month breaks to recover. My break was longer because I had done eight months of chemo and then had HIPEC surgery to recover from.

It's now time to plan the next six cycle course of treatment.

Tiny marsh geese

I visited some Canada geese at Tiny Marsh in Tiny township this morning on my way home from the Cancer Centre. There were many and they were quite relaxed and beautiful.