I've said on more than one occasion that I've had nothing but teriffic luck with my interactions with the health care system. The surgeon who originally had my case in Midland took my pain complaints seriously, my medical and surgical oncologists did absolutely everything they could, and, finally, my doctor in Elliot Lake took me on as a patient the moment she got my case out of the ER.
My Elliot Lake doctor gave me my Daley, the tasty tasty noodle boy. He's my broth buddy, picked because I've been on a fluid only diet since early July (even though I'm not even really eating that, either).
I know my experience is not typical, I'm familiar with other people's horror stories. But I'm so grateful for the care I've received, and I hope we all can get what we deserve in the future.
*I'm not forgetting nurses, at least on purpose. I feel confident that my stay at Mt. Sinai would have been days longer if not for two specific nurses taking special interest in my case. Here, as a palliative patient, I have nurses who will stop by for a chat, sharing bits of their lives outside the hospital walls (children, dogs, cats, a goat, skeet shooting, a little bit of everything). It keeps me grounded and in the world. Also, the nurses do all the real labour or care, for which I cannot possibly express enough gratitude for
This is the anniversary of when I started this album. I'm not sure what I thought I was doing then, but eventually I found my comfort zone relating my experiences with the medical system - the administrative side and the treatment side. This was a comfortable place through chemotherapy, and honestly an exciting one for me to be in through surgery. But I've struggled a bit since then.
I thought it was just that surgical recovery was boring (and it is), but chemotherapy was the same two week cycle sixteen times, and I never felt this way about it. I still talk nonstop about my cancer, as any of you who know me in person, or are in the same Facevook groups, can attest. But I haven't been able to figure out this place.
I think the reason is that, in light of my failed surgery and prognosis, the only place it made sense for me to go was do the same kind of day by day thing, but instead of it being about getting the full cancer trearment experience at 35, it's about grappling with mortality at 36 and, statistically, dying at 37.
Mental health wise, I'm just coming down from a minor hypomanic episode and feel stable, bipolar wise. My lithium levels are good. If asked how I'm doing, I'd truthfully answer "good, given the circumstances," but I can't tell you if that means I'm doing good.
I'm not an actor, though, when you see a look of delight on my face, that's real. I do have an actual notebook with an actual list of neat stuff to do and I am actually crossing things off on all my little adventures. I'm getting out and experiencing the world. Probably doing way more than I ever would have if I remained otherwise healthy, too, which is a thought too terrifying to contemplate.
To end, because it's been haunting my dreams and hopefully sharing will help, if someone, someday, talks about my death bed conversion, know that they are a disgusting fiend who takes advantage of the vulnerable to glorify themselves. If disease progression or treatment leaves me vulnerable earlier than that, same logic applies. These people were never able to convince me so far, I doubt they'll come up with something compelling in the next few years. I doubt I'm interesting or notable enough to receive this treatment, but I know it happens, so I know I'm not 100% unreasonable in my fears.
Outside Bala, Ontario, searching for its Bog Beast (visible in far background)
When I bought it, I thought it was a cat, I now realize it's a hamster. My first pets were a pair of hamsters, who's claws terrified me so much I barely held them. And now I have a cat who walks up and bites me for unknown feline reasons, we change so much
At Balm Beach, arcade, store and restaurant visible as bright lights
Recording videos at the marsh
Goose friend!
Suspect beaver (at Kirkfield lift lock)
Mystery door, Collingwood
Rainbow trout, Thornbury
Old historical rail bridge, Thornbury
A cool evening, down by the bay
Most antique shop booths are dragon's hoards of shiny things, thrown together. This one was a beautiful room (ft [Lilly]({tag}Lilly))
Is he looking at me?
State of the Moustache
Memento mori
At the restaurant in Balm Beach (I had what they called an Austin Cheese Steak, which i assume is a regular cheese steak with Texas grilling traditions. I have no idea, it was delicious though)
I'm stoned in some of these pictures, but not this one, no matter how it looks.
10/10, only note is that I wanted more giant octopus
I can tell the chemo really effected me because it's above 30C here, there's no shade for 2km, I've already been outside for half an hour, and I'm just comfortable.
From the comments
James Petrosky: 37 is an estimate. I don't want anyone who knows me well enough to start doing math on my birthday and panicking. 38 is probably a better estimate, but 37 fits the flow a lot better, and it's all statistics based on regular colon cancer anyways
James Petrosky: I want to dramatically say "from here on in its all about death" but honestly it's been that way for a while. You have no idea how happy the "thinking about death" joke in Barbie made me, because a) it was funny, and matched my mental state perfectly and b) gave me a lot of cover to joke about it all summer. So thank you, Uncontrollable Thoughts of Death Barbie, you're a life saver.
James Petrosky: Somewhat related to liars for Jesus are liars for other spiritual causes. Mediums, channelers, seyances, ghost hunters, it's all evidence free nonsense, and they do tremendous harm to people undergoing grief by giving them a false hope that can never, ever be realized. If there is somehow an afterlife that can communicate back to the living, I promise you I'll never, ever give these dangerous frauds the time of day. I can be a stubborn person, and this is the thing I'm most stubborn about, so you can be sure I'll hold to it.
Because we live in something approaching a techno dystopia, it's possible to train a large language model on someone's social media history to create a computer program that can write and speak like you can. Maybe there's not enough information available for me. Almost certianly I'm not important enough for this treatment. But if this is done, and it's done well enough to be convincing, the output program is also not me. It's just an actor, playing a role. The same as a spiritualist, they just learn their script from different sources.
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.
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.
Hanging with my main poodle, after my parents had returned me from Elliot Lake to Midland
I have too many pushes, every time the nurse comes (daily) I move them to one side, then back again at night. It's exhausting.
Down by the bay (Georgian)
Elmvale, Ontario, assisting in fetching dinner for a games night
All cats are fun to annoy, Thomasin is the best cat to annoy
Royal Victoria Regional Health Centre, home of the Simcoe Muskoka Regional Cancer Program, where I receive my treatment
This is the third time in my life eating Taco Bell. We'll never know if it's the food or cancer that makes me sick
Lilly and I, enjoying our garbage (being good raccoons) after a day of medium yard work AKA cutting back weeds that went crazy when I was in Elliot Lake for a month
Hanging with my goose friends
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.
I leave for my chemotherapy appointment in a couple hours. It's not going to be too bad, I'll feel like throwing up for three days (but probably won't because the medications are effective), I'll be unable to eat anything but yoghurt and white toast with jam (and I won't want to eat that past the halfway point), and I'll mostly be just awake enough to feel the time pass.
I've developed such a feeling of dread for this. It was easy to motivate myself when the memory of the cancer pain was still fresh. But it's been six months since I felt that pain, six months since all of my symptoms are the direct result of the treatment. I know I need to keep getting treatment, know that I'm in another phase, that things are moving, but I also know that this dread is spreading earlier and earlier into the cycle. I started feeling the anxiety and dread Sunday. It used to only start day of.
The cycles carry on, and they're exhausting.
From the comments
James Petrosky: It doesn't help that my appointment is later in the day than usual today. I just get to sit around, full of worry, burning through the dumb internet nonsense I'd normally enjoy while receiving treatment.
James Petrosky: I clean off my bed for maximum chemo comfort, so I made this adorable pile of cute friends
Yesterday I spoke with the surgical oncology team. The CT scan looks great, we're officially moving on to the surgical stage of treatment. While I'm waiting for a date, I'll keep doing chemotherapy (modified, we're discontinuing one of the drugs for now), I'm very excited for this development. For now, I'll have a lot of paperwork to do and a lot of anxiety to cope with, and there's a chance I'll be on chemotherapy longer at this stage than during the first stage, depending on how scheduling goes. But it's a new day, and I'm more sure now than before that the light at the end of the tunnel isn't an oncoming train.
From the comments
James Petrosky: I'm going to note again that this first surgery, a laparoscopy, is entirely to help decide if the full surgery is an option for me. If the cancer is growing in vital blood vessels or nerve clusters then that's the end for surgery. Making it this far is fantastic news, but the real hurdle is a good result on this first operation.
Twelve cycles is the number originally requested by the surgical team at Mt Sinai. Tomorrow I go for a CT scan to see how the cancer has faired the last three months. Saturday I speak with the team. I'll learn if the tumors have shrunk, about any possible spread, about the anomalies in my lungs that haven't yet changed over the course of treatment (these are almost certianly fine, but I'm an anxious person), and, hopefully, about the scheduling for my first surgical procedure.
I'm scheduled for a 13th cycle next week, but if the date is soon enough, it's possible that will be delayed. I don't think it's likely things will move that fast, but my medical oncologist is the one who put the idea in my head, so it isn't impossible.
It's been an exhausting six months, and an extremely painful nine before that, but right now I feel hopeful, that I've finally made up enough ground that I can be hopeful about this more aggressive phase of treatment.
This is the most I'll I've felt in a number of cycles. Hopefully it's nothing rest won't solve, the reschedule really threw me off. I needed extra nausea medication at the chemo suite, which is a new one for me.
I'll have my take home baby bottle until Friday morning, which forces my Decemberween travel date to Saturday. Saturday, we are expecting a major winter storm. Here's hoping that the luck I'm not feeling with the chemo holds on the weather, but I'm not holding my breath.
Its been a happily quiet few days, since I got to return back to my apartment. But that cannot last. There's a winter storm expected tomorrow, which doesn't impact someone who stays home a whole lot, but Friday I have an intake appointment with a palliative care doctor that I don't want to miss or have to reschedule. And then four appointments next week (pre-chemo oncologist appointment, symptom management, chemo, chemo disconnect), which is a lot of hospital trips. Being terminally ill is practically a full time job.
This once again sounds more defeatist and depressing than I mean it to. I'm living my best life, doing hobbies, playing games, taking outings to enjoy seasonal lighting, spending quality time with my cat. Decades of mental illness, and coping with mental illness, have given me a good base for coping with the situation.
The CT scan results were good. Most importantly, to me, there were no new growths visible on it. And existing growths have all reduced in size compared to August. Bonus good news! There were anomalies on my lungs back in August. They remain and are unchanged, so they're source is likely not this cancer. Extra bonus good news - the immune shot worked, my numbers are as good as they've been since I started chemo, and I won't need one this week (so I won't have bone pain next week).
This all matches how I've been feeling, so the super extra added bonus is that I can trust how my body's feeling again. Which may be normal for many, but I spent at least nine months where I was increasingly unable to. It's a nice thing to have to get used to again.
The bone pain was excruciating, second worst continuous pain I've ever felt in my life, but fortunately only lasted two days. And I was able to be active, it really only hurt when I tried to rest. I did all my Decemberween projects during the worst of it. Don't recommend, but I know what to expect next time, so I'm not afraid or anxious about facing it again.
I'm pretty open about almost everything I'm going through. For reasons I cannot explain, sharing extremely private information about my diagnosis, prognosis, etc., is second nature to me. It would feel strange for me not to share. But the fact that I'm stuck inside my apartment several days a week because of diharea (colloquially, although much of the time medically) seems to embarrassing or crass to share. But I'm feeling spicy today, so here's the facts: bowl cancer, chemotherapy, and more than a few of the other medications I'm on really screw things up, I keep immodium on my person at all times (and have since the spring). I've made it work, but I've missed out on a lot of stuff I've wanted to do (nothing planned, but nice days for walls and such).
Humans will adjust to damn near anything.
From the comments
James Petrosky: In case you're wondering: it's as delightfully soft and squishy as it looks. 10/10 strong recommend
Immediately noticeable side effects were pretty easy this time. I've learned how to properly take my side effect medicine, especially the one for nausea. My energy levels are back near where they were on last day 14.
But it was a bad weekend for my hair. After carefully brushing out a mat that developed over the weekend (probably started earlier, I've been really scared to touch it at all) I lost half a sink full. I knew this was coming.
Today I speak for the trees
I didn't intend for this plant to be in frame, but I'm going to try again sometime.
Waiting for my Catbus
No geese, few ducks, two swans.
I overdid it, I should have done the 2km walk, not the 3.5km one. I've just realized my mistake, but I already passed half way, so I have to keep going.
The giant blade of grass at the middle left ruined a bunch or the great photos because it is a cruel abstraction
I moved the Squishmallows to their hammocks and Thomasin is instantly happy to have her fifth favourite napping spot back. She immediately came for a snuggle and even let take this photo
A short and not comprehensive list of songs I've had to remove from my playlists since being diagnosed with cancer:
Kettering by The Antlers
Easy/Lucky/Fred by Bright Eyes
There are certainly others, but these found themselves removed today.
I want to reiterate how wonderful you've all been, how much your kind words and Facevook reactions mean to me. You all mean so much to me, thank you all so much for existing ❤️
From the comments
Mica: Have you seen the anime short of the little girl who gets turned into a gengar? So cute
Cycle one is drawing to a close and I have A Lot of appointments this week. And I know I'll be bedridden for the first five days of cycle two at least, so there's a lot to do. But for now, I keep busy, I work on projects, I find water birds in new and exciting places. It's not the life I expected, but I'll still make it mine.
Public art in downtown Midland, Ontario
Honestly I think I like loons more than geese, they're a magnificent and haunting bird, geese are just what we deserve. Also, I absolutely love geese as much as I say I do. My love for loons is passionate, but silent.
A nice thing about being a trades person is having excellent practical outer wear. Balm Beach has no street lights, but I was extremely visible (dancing badly to Firework, no less) and completely dry.
The chemo bottle has been removed. It was good to get out of the apartment, and I'm going to need to balance getting out with how low I feel on days 1-3. I wasn't going to get Tomara, but I take frequent emergency washroom breaks, now, and the mall in Barrie has the cleanest washrooms with the lowest human density (fast food is much much more crowded). Anyways, this charmer called to me and I have poor impulse control.
The next one I'm allowed to get for myself is after the end of the sixth cycle.
I wanted to post more, but my hydro's been out since early this afternoon and I don't have the light to do it. Tomorrow, perhaps.
Going up to the inpatient cancer center to have the bottle removed
Cancer ward waiting room
It's done, it's gone, it feels good, but some of the feelings linger
The PICC line, for those (like myself) who were unaware, is a line inserted into a vein in my non dominant forearm that extends to the heart. I'm glad I was ignorant until minutes before the procedure, because that is the stuff of nightmares for me, even if the actual result felt, at worst, a bit weird
It's hard to sleep some days, procedure days especially.
There are many sorts of chemotherapy. Which makes sense, cancer is a collection of diseases of various tissues.
There are many sorts of chemotherapy. Which makes sense, different tumors and different cancers are going to have different vulnerabilities.
There are many sorts of chemotherapy. Which makes sense, side effects are an important consideration, and the risks must always be balanced with the benefits of the drugs.
There are many sorts of chemotherapy. Which makes sense, some are used to prepare for surgery, or to remove the cancer completely. Others are palliative, used to prolong life and minimise pain.
Friends, my chemotherapy is palliative. Which isn't to say my oncologist has given up on me, this round of chemotherapy is simultaneously the correct standard of care and the necessary first step to get a more advanced treatment.
The PICC goes in tomorrow, and the first round of chemo starts the day after. I've never been more tired and overwhelmed in my life.
My parents are visiting this week, which is a great comfort, and they've brought my best poodles, Annie (golden labradodle) and Bessie (black standard poodle). I've saved this post for the day I got lots of good photos, maybe it'll help lighten things a touch.
Posting with my skulls
Some friends joined the skulls
Annie the labradoodle
My mother
Bessie is too energetic to easily photoshop
Still too active
Still too active
Bessie yes, me no
Damnit Annie, Bessie was so good here
I finally caught my poodle
My best poodle ❤️
She bopped me pretty good because she wanted to trot around again
Its not all bad, all my silly stuffed animals do honestly help. I surround myself in them and it's comforting. Except for Thomasin, who protests until she gets a whole side to herself.
Also, cheap supermarket sushi lunch. I can only eat sushi for another four days so I'm enjoying even the cheap stuff while I can. But someone else was also really interested in it, so we had to battle a bit. Don't worry, it's tuna melts for dinner, she's going to get her favourite fish, too.
Maggie's little ray wings are so fun
Nessie is still my favourite though
Thomasin /loves/ tuna in a way only an obsessive cat could (I have flee treatment on order from the vet, she scratches her chin like that every year and I forgot to get it proactively because it's been a wild summer for me)
Thomasin also likes salmon, but less so, I didn't need to physically hold her back from this one
Today was not an easy day. I managed to get a few things on my todo list done, but spent most of the afternoon in bed sleeping. I'm tired and my mood is low. The feeling passes, but there's a strong temptation to dwell there.
In the morning, before getting up
I've been crying a lot, and I have no intention of hiding that.
This photo looks sadder than it is, I found a low pressure sodium light and the monochromatic light was fun to play with. This shirt is blue, my hair is green
I really liked the sodium lamp, I have future plans for it
From the comments
James Petrosky: I did try and get a change of scenery to break the mood, but that truck was parked in my driveway blocking me in. After a decade of knowingly struggling with mental illness, I have a large toolbox for dealing with this sort of thing. But sometimes we're thwarted, and sometimes we fail, and that's okay. Thomasin, as always, is a delight and a help, and honestly filling my bed with cute soft toys had a much bigger positive effect than I would have thought.
