Cancer Selfies

VLog: August 7, 2023

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

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.

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.

VLog: July 31, 2023

I did my chemo bloodwork! The goose video is here

VLog: July 30, 2023

I only stopped wearing masks in June of this year (and I'll start again soon)

VLog: July 29, 2023

A 1% chance of death is a terrifyingly high chance

VLog: July 28, 2023

The brain fog is real

VLog: July 27, 2023

Introducing Thomasin! (she purrs)

VLog: July 26, 2023

In addition to appendex cancer, I also have bipolar (II) disorder and boy howdy is that a combination

VLog: July 24, 2023

I visited Mt. Sinai for a surgical followup (things are going great)

VLog: July 23, 2023

From now on, I'm displaying my PICC as well as I can.

VLog: July 22, 2023

Half in Elliot Lake, half in Balm Beach. Either way, I look exhausted and have intestinal distress.

I'm going home

Today I left Elliot Lake and returned home to Balm Beach, Ontario. Since we departed early in the morning on June 8th, I've only seen Thomasin for around half an hour. I adore Annie and Bessie, my Poodle Pals, and don't know how I'd have handled the last month without them, but I'm overjoyed and relieved to be with my cat again. And she's never been this affectionate. I know I'll eventually have to leave her again, but until that day we're together.

From the comments

James Petrosky: My incision still has a lot of healing to do, and I'm still restricted on how much I can lift, and the motions I can make. If I were planning on returning to work, I'd still be off for two months.

Everything is ready, I leave tomorrow

I can't be sure I didn't think it back in August, because August was the darkest time in my life and I have very little memory of it, but I don't recall once entertaining the thought of how unfair this all is. Don't get me wrong, cancer is one of the most profoundly unfair things I can imagine. If we were to personify the universe itself, I'd say criminally unfair. But personifing the indifference of the totality of existence seems as valueless as fixating on the unfairness of it all. This is just how life is. It is our responsibility as creatures capable of understanding this fact to do what is in our power to create places where we work for, and celebrate, fairness and hope and love.

Friends, thank you for doing your part in making one of those spaces for me this past year. In a very, very literal sense I could not have made it this far without you. One of the things that makes cancer so insideous is how long treatment takes, and how disconnected you become from everyone who doesn't make an effort to stay in touch. Thank you all for making that effort, however small you might think it was.

Tomorrow morning at around 4AM, I leave Midland, not to return for many weeks. Thomasin will be we cared for, and I will miss her tremendously. At 7:45AM I have to be at Mt. Sinai for a pre op appointment, and the remainder of the day will be spent following whatever instructions I'm given. Friday, at 7AM, I have to be back at Mt. Sinai to check in for my operation, which is scheduled for 9AM, making those two hours on Friday by far the longest I'll ever have to endure. And then, with luck (which, to be honest, belongs in the same bin as unfairness), I can close this chapter of my life, but regardless of luck, the long process of recovery can begin.

From the comments

James Petrosky: The hardest thought I've had over the last week is knowing that, even in the best possible outcome, I may be cancer free, but I'll never feel as good as I have since I finished chemotherapy. I'm trading some quality of life, largely in the form of digestive organs, for quantity of life. This is a calculated risk. I've done my reading, spoken with the specialists, and know what the remainder of my life looks like with and without the surgery. I've followed the science, which is the best we can all hope for.

The corelary to this is that I never felt worse than I did in the lead up to chemotherapy, and probably could not endure the pain I felt at the appendix biopsy again.

Small surgery, slow recovery

Surgery recovery has been slow. The pain disappeared a week ago, but I still tire quickly when walking uphill. I'm still off chemo, which makes things a lot easier, but it's still difficult.

My mental health has taken a hit over the past few weeks. When combined with the recovery, it means that I don't have much energy to do more than the bare minimum. It's unfortunate, but tends to happen every change of season, so it wasn't unexpected, and I have an appointment about it coming up.

From the comments

James Petrosky: The township put the benches and picnic tables out down at the beach this week. It makes my little strolls a lot more pleasant.

Exhaustion is bad for mortality salience

Cycle 16, Day 12

Gang, I'm so tired. Tired of counting cycles. Tired of the side effects. Tired of living in a sort of constant existential terror.

I took a walk to the beach, roughly 400m, and found myself lightly winded when I got there. Walking back was the same story. I've been doing some basic yardwork, collecting leaves that fell on the patio stones mainly, and after three hours of medium-light labour I'm so exhausted I need a nap. I've never been the most fit person, but even at the peak of my cancer pain on the late summer I was still able to work (medium-heavy labour) fifty hour weeks without wearing myself out. It's a lot to get used to. And to add further insult, my nose has been running constantly for the last month. It's a known side effect, but it's gross and frustrating.

For the sake of my mental health, I need surgical dates to look forward to. I'm hoping I hear something this week

From the comments

James Petrosky: Most of the time I'm pretty comfortable with my mortality, but the anxiety and depression and exhaustion have a way of eroding the peace I've made and found.

James Petrosky: My personal nurse has been a tremendous help, though

Cathy: