Cancer Selfies

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.

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 25, 2023

Midland is boring, there are lots of appointments, pizza is great

VLog: July 24, 2023

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

Return to Mt. Sinai

Today I made the journey to Toronto, to return to Mt. Sinai for what I hoped to be the final time, I had a followup appointment with the surgeon who preformed my aborted HIPEC surgery.

The surgeons were very happy with how my incision was healing. My home care nurse in Elliot Lake had been updating my surgeon, so it wasn't too surprising, but it's still great news. The area that seperated, that is still healing, is where my belly button was. My belly button was removed during the surgery (the only cancer that was removed), so there was some lost skin here. I hadn't made the connection, hadn't realized that I was missing skin, and this allows me to cease worrying that I could have done more for healing. I also hadn't figured that the belly button was the source of my pain all last year, so when pain returns, it can't be the same source.

I no longer have any physical activity limits. I can work my way up to any sorts of exercises I'd want to do (weight lifting would still be out, but I've never had interest). I was told that what I really want to do, gradually increasing my walking endurance, is exactly the sort of thing I should be doing. Which is fantastic, I'd love to recover some strength and a lot of endurance before I restart chemo, which is going to hurt both of those things. I should have a chemo rest period before the cold weather sets in, so I can recover more, but I remember how cold I was all winter, that will be a season of atrophy (I have Ring Fit Adventure for Switch, which I hope will help mitigate the winter losses).

This week I have to get a CT scan, and ensure its summertime hot flash, and visit the cancer centre at the Royal Victoria Regional Health Centre in Barrie, and then next Thursday I meet with my medical oncologist in person to discus the results and come up with our Summer/Fall treatment plan. My surgeon thinks that if we can afford to delay (the CT scan shows minimal change from the CT scan I had back in March at the end of my second round of chemo), we should allow the incision another few weeks to heal, but that it's healed enough that we could start chemo sooner. That's ultimately a question that only the medical oncologist can answer, and while I have some say in the matter, I fully intend to defer to her.

From the comments

James Petrosky: As is traditional when non-Torontonians from rural Ontario visit Toronto, we got food that's hard to get in Midland (dim sum, in this case) and took a stroll in a walkable neighbourhood with fun stores (Chinatown, it's almost always Chinatown, especially because it's minutes from the hospital). We stopped at a Chinese bakery, many bbq pork buns were enjoyed (also a good selection of other tasty treats, but the pork is my favourite)

I really wanted to visit the Art Gallary of Ontario, Couch Monster is just outside the AGO), but the 600m walk from the hospital to the AGO took a lot out of me. But there will be future trips, hopefully planned far enough in advance that I can invite others.

I'll never really get to use my licence

I was pretty pleased about passing my licencing exam last year. But we now know that I did it with excruciating cancer pain AND some pretty bad intestinal panic. Also I did extremely well.

Couldn't have been prouder of any other accomplishment to end my career on (even though it traditionally marks the beginning of a career)

The following was originally posted July 23, 2022

This week refuses to quit with the ups and downs

From the comments

James Petrosky: You can sad and care react if that's what feels right, but I'm genuinely pleased with what I accomplished, and am comfortable with it being an ending. I am at peace.

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.

VLog: July 21, 2023

Last day in Elliot Lake, tomorrow I travel home (and get to see my cat)