September is a time of transition for us all. The seasons demand it of us. Our geese gather and leave us, hoping for warmer climates (or the open watering holes of southern Ontario). The leaves change as they die, so the trees as a whole may survive. And in that change, give us the colours of a perpetual sunset until the cold waters come and end it all in a sludgy, cold, slippery mess from which next year's leaves and berries and wonder all grow from. We may not all be there to see it, but its happened every year since the glacier's retreated and I see no reason why it wouldn't continue in my absence just as it has. Maybe with a bit more spice from climate change than we'd like, though.
I have been doing a video series on how weird a transitional splace hospice has been for me. Because it has truly been the strangest physical, mental and emotional places where I've spent any serious amount of time in. Its been a deeply special place, and, as the last few grains of sand in my hourglass empty, one I've been very glad to call home. Its been a gift to me and my family. But a deeply strange one. Some days its a regular apartment, which just so happens to be attached to a hospital, where your old sitcome friend (who always happeens to be a nurse) can bardge in any time to an appause track as they either solve the little problem you were having (usually an IV disconnect or reconnect) and be on their way. Sometimes, though, you're just trapped in a hospital room with no magic, where no amount of whimsy in the form of flowers and quishmallows and toys and pink flamingos and photos on the wall and children's colouring and the like can save it. Its still just sterile.
And those days, my friends, are the hardest ones. Because no one can breath life back into the space. Its just gone for a moment or a minute or longer. And I am ost without it. Its happened rarely, but some day the whole edifice willl colapse, bringing with it the joy I have found here. There will still exist joy obviously, the poodles and Thomasin still exist, but it will be lesser, different. It will be another stepping stone on the path towards my inevitable death. Which is inevitable, and not something I intend to run from at all.
Today there is joy. There is joy in hospice, so here I shall remain. But I must remember that the geese fly befroe the winter, not after the ice has frozen their ponds over. And I just need the wisdom to find that inflection point within my life.
September is a transition time for us all. After all.
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 muchAt Balm Beach, arcade, store and restaurant visible as bright lightsRecording videos at the marshGoose friend!Suspect beaver (at Kirkfield lift lock)Mystery door, CollingwoodRainbow trout, ThornburyOld historical rail bridge, ThornburyA cool evening, down by the bayMost antique shop booths are dragon's hoards of shiny things, thrown together. This one was a beautiful room (ft Lilly)Is he looking at me?State of the MoustacheMemento moriAt 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 octopusI 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.
A collection of hair styles I have chosen, and that the treatment has allowed for me.
Centre is pre-diagnosis, pre-treatment, regular assed long hair
North is bleached at Lilly's place, I'd have loved to wear it more than an hour, it wss fun
North-East is the blue that was on the box. It didn't take
East is the glorious green I got
South-East is the green as the sun ravaged it and the chemo started to take holding
South is the point where I shaved what remained
South-West is the baby fuzz starting to grow back. It was very soft, wavy and provded no tempeature regulation. But it was summer, so it also provided no sun protectiuon.
West was the straight bald i wore through most of my last chemo cycle. It was easier to keep the floor clean with a perminanly shedding cat that way.
North-West is how it is now. The facial hair grew back in better and more mountin man than I could have ever hoped. I wish I could survive in part because I just want to see what it can do. The baby hair is back, soft as ever. I may not have won the lifespan lottery this go around, but I'm doing great for hair. And sometimes you take what you can get.
You have fine the joy when it comes to something like cancer. Once it has sapped all the joy, and I think it inevitibly will, that's your end. Or at least it will be mine. But I've been talking with the many faces of death, and I don't think we're ready quite yet.
I miss my long hair, and my green hair, and especially the few days it was blue hair. I did a thing I'd half heartedly wanted to do for a decade, and I'm glad I did. It's nice that not everything in my Facevook memories is an emotional timebomb I've got to work through.
Boy do I have a lot of feelings about the Terry Fox Run, F🎗️ck Cancer bumper stickers and the like, and the way the media talks about cancer patients. But it really is a lot lot of feelings, and I haven't been able to articulate them in months, so I guess this is all I'm capable of saying to mark the 42nd Terry Fox Run.
From the Comments
James Petrosky: The man did great things, but it sure would have been nice if we, as a society, hadn't decided that running across the second largest country in the world was one of the proper ways of dying of cancer. It's an impossible standard to live up to.
Nobody dare say you don't hold me to this standard. Just don't.
I know you, individually, don't. But I've been scouring the news for months and it is absolutely how we, as a society, feels.
The actual requirement to die this way correctly is to pick a physical feat that a regular person would recognize as difficult and also something they'd never do. Journeying across the country is the best possible choice. The country is fucking huge. Across a province, or a long trail system also work for less physically capable people. Going from fat pre diagnosis to running marathons also works. The important thing is that you have beaten cancer, and are taking a victory lap (and telling society that you care about your health now, because did you really do everything in your power to avoid cancer in the first place?), or are the general, getting yourself ready for the final showdown (you were going to die either way, in the case, but at least you tried by doing something that was never going to affect the outcome)
James Petrosky: I am not about to go policing how any cancer survivor, family member, or terminal case relates to, and talks about, the disease. If you're thinking of a fuck cancer sticker for my benefit, don't. I hate them. I don't need the constant reminder, I already know it's a pretty shit disease. But if it helps you, have at it.
This is complicated by the juvanile jackasses who broke out the Fuck Trudeau signs days after his election. Whether any of us like it or not, a comparison is being made. What was once a flippant say of saying "ugh, this giant class of diseases, right?" now is forever tied up in conservative grievance politics and the fascist trucker convoy. They made a statement against a disease into a statement in favour of another one (that would fuck me up beyond fixing if I got it again)
James Petrosky: Devoting your life to something important to you is one of the three correct ways to die of cancer. The second is to deny the situation, seek out experimental treatments, and fight (because cancer is a battle, and when you lose a battle, you are at least somewhat at fault (unless your a World War 1 general)). So, really, if you don't fight, how can you be upset about dying?
Again, I don't need to hear that you don't think this about me.
Of course it's really complex in reality, most experimental treatments don't work because that is the stage of research they're at. It showed promise in a dish, let's see how it works in a body. But side effects exist, especially on treatments that haven't been proven to work yet. So, really, the treatment probably won't do much good, it's almost certain to leave you with vomiting and constant diahrea. But you're still the general, and it's still your battle to lose.
James Petrosky: The third proper way to die of cancer is only available to people much older than me. 50 is young in a lot of cancer circles. People 65+ can be praised for dying in their beds, surrounded by friends and family, reflecting on a life well lived. I'm 36, so I haven't lived enough. I just get to die an illegal death from cancer.
James Petrosky: Non Canadians. Terry Fox was a young man who died of cancer while trying to run across the country. He started on the east coast and made it to Thunder Bay, Ontario. He's probably the person you can get the most Canadians to say was the Greatest Canadian.
Extremely bad news to all my anxiety friends! You're going to spend the whole time you're aware that you are dying (and I don't mean in the sense that death is the only birthright of any living thing, I mean in the active sense) worrying that you're doing it wrong, that maybe you should be spending more time tidying so that you can look like your holding together (which obviously has nothing to do with how much dust is on your bookshelf, but fuck does it feel like it should).
From the comments
James Petrosky: I think this is the unpleasant death subject I think about most. My sincere belief is that I made a todo list of mostly just weird junk to occupy time and give me enjoyment. But another valid interpretation is that it's an act, intended to fool me and everyone else, into thinking I'm processing things well, when really I'm so fucked that I can't even be honest about my own motivations.
I think I'm doing trips because I experience genuine joy from them, but I haven't figured out how to tell for sure.
James Petrosky: Tidying and cleaning is a really, really big one for me, because it's something I've always failed at. So, naturally, if I can keep my apartment in order, then I'm doing fine, and since it's a fucking disaster around here (asside from the litter box and toilet), I'm not fine. (Specifically do not want offers to help, holy shit the only way to make this worse is to have to admit I'm no longer capable of maintaining my space, even if it's true)
James Petrosky: My thoughts are very fragmented here, I should have probably let this one develop a little longer. But the take away is that there's no right way to die, there are probably wrong ways but if you aren't doing colonialism looking for the fountain of youth, you're probably okay.
I poured out everything that remained of my alcohol collection today. I've known my body can't really take it anymore for over a year, and by surgery time knew with medical certainty that there was no outcome that would make it safe for me to have. I think part of me was still hoping for a reckless glass of celebratory scotch that was never going to happen. And now cannot happen.
You mourn life and normalcy in fits and starts. I haven't felt much since I got home in July. But it's September now, the tourists are leaving, the season is changing, and the geese are practising Vs. It's a reflective sort of time for me, and pouring it all out hits a much more raw nerve than I expected.
From the comments
James Petrosky: I've definitely mentioned it before, but it fits well here.
After academia and I had a pretty rough falling out (undiagnosed, dangerously wrongly treated bipolar disorder played a part), I had no idea what to do with myself. I spent a couple years temping and working retail, and knew that wasn't for me. But it taught me I liked people. And like a lot of hipster types at the time (2012-2014jsh), I got into making drinks.
Over the next few years I made all the drinks at gatherings and family events, and really enjoyed the experimentation and adventure of it.
I started work at my final employer in 2015, as a temp. I didn't know if I was going to make another try and grad school, finish the courses I needed for a geology designation, or try my hand at mixology school. And becoming a bartender was more than just a passing fancy (although it may have been just a bipolar/ADHD fancy).
Obviously I didn't do it, and not regret that decision. But getting rid of these bottles is getting rid of something that was once very important to me.
James Petrosky: I've written a lot of morbid and depressing shit over the last year, and this may be the first time it's pure mourning, without a hint of anxiety, terror or anticipation thrown in.
James Petrosky: (I actually kept a full bottle of pisco I bought in Peru, I don't know why, if I haven't drank it in ten years, I probably never was going to, but some things are too hard
Ryan: Man, of all the things you’ve posted, this has been the most . . . like really reckoning with things, at least as I’m parsing it.
I know you’re not a person of faith, and I am not one any longer, but the feeling I have toward you in this moment is one I only have words for in a faith based context, and I don’t know how to say them in a way that doesn’t rely on a fantasy. But I’m going to try here, so please forgive any weird phrasing:
I feel the echo of your heart within me.
James Petrosky: Ryan I've tried and failed three times at a response, so instead all just say thank you.
Ryan McGill: James Petrosky it’s all good, friend. I find myself in the same situation with many of your posts, but this one connected in a way that I couldn’t just leave a reaction. And with what we know about human memory, I think I’m going to carry it with just about every glass I raise.
James Petrosky: The fucking wild thing is that I actually wanted to talk about being off work for a year, because we're 6 hours away from that. But it's recycling this week, and decided I wanted to dust the bottle shelf. And here we are. Nothing is ever planned, things just happen because the universe is chaotic and impenetrable and beautiful.
James Petrosky: Because I'm having Something Of A Day, I went and broke into my forbidden song vault and listened to Kettering by The Antlers. And that was very dumb of me. The vault has been resealed.
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.
This one's a bit different. It isn't about surgical recovery (it's going very slow), nor about cancer treatment (I'm waiting for the 12th for my oncologist appointment), but it is about death and dying, something I imagine every cancer patient spends a lot of time thinking about, specifically it's about religious/philosophical beliefs surrounding death. So if that isn't something you can deal with right now, maybe go find some geese to watch or whatever else makes you happy. Also, please read the whole thing before commenting, I specifically do not want certain kinds of discussion.
Also, if you're reading this, you are not the one who did this1, nor are you likely to know the people who have. You've all been very respectful, and I really appriciate that.
I'm an essentially lifelong atheist. I'm secure in my beliefs and feel like I've given a fair shot to many of the competing systems out there. I think that most people reading this, atheist or one of the various sorts of theist, probably have as well. And, up until my cancer diagnosis, I've enjoyed discussions with reasonable theists (basically, if your denomination doesn't think I deserve eternal hell fire for being bisexual).
But that did change with the diagnosis. I spent the time I had exploring ideas and strengthening my own, now it is time to reap the comforts that come from such beliefs. In time, I'll get much more into this, but I believe that there is nothing after we die. We simply cease experiencing and existing. I get that this is a terrifying prospect to some, which is why I don't go around to palliative care patients and say things like this.
So, my question is, why do some Christians have the audacity to not return that respect? If praying for me gives you comfort, have at it, but I don't need to know your praying for my soul. I don't want to hear of heaven and hell, thoughts of annihilation bring me peace, bringing hell into the mix just gives me anxiety, not because I secretly know it's real (frankly, no one really knows any of this stuff), but because I grew up in a very Catholic town and some ideas osmos even if you never enter a church.
(I do know the answer, when you throw infinite punishment into the mix then any tactic can be justified to avoid that outcome. It's just that this version of Christian love is abhorrent to me. It doesn't threaten my beliefs, it can't because there's no argument to it, just an emotional appeal, but in the dark of the night, when the sads have set in (and they always do), it can force me to spend some of my precious few remaining moments in stress and anxiety, instead of in hard won peace and serenity)
So here's my request: do whatever feels right to you, pray, so rituals, pet cats, honk at geese. Help yourself feel better, and if you think there are powers in the universe which can help, then have at it. But only tell me that I'm in your thoughts, or that your praying for me (without adding more detail). Because it does mean a lot to me, but I'm fragile, and I want to hold onto the peace I've built over my unfortunately short adult life.
NOTE this is not an invitation to debate my beliefs, to say not all Christians (I know it isn't all Christians), or even really to roast the mystery people I'm vaguely talking about. I will answer good faith questions, though
I can noo longer guarantee this, but it seems unlikely it was you ↩
Today was the day I finally saw someone around my age in one of the chemo chairs. He was accompanied by another young man, around the same age. A brother? Friend? Lover? I'll never know. I hope they do well, but I know from experience that doing well is relative. It made me sad, but affected me a lot less than I thought it would.
By chance, I listened to a podcast episode about the science of death and dying while I was at the cancer centre. Friends, don't listen to podcasts about death and dying while in a hospital. It's not great for your anxiety levels, especially when you've got other anxiety inducing stuff going on, and especially especially when you're walking into a housing nightmare when you get home.
Speaking of housing nightmare, I'm spending my chemo recovery period in my partner's spare room. Thomasin is being introduced to her cat, and it's all just a stressful mess. Not at all what you need when you're recovering from, and receiving, chemotherapy.
Perfectly centred in the chemo centre waiting room
Chemotherapy always leaves me a bit flushed looking.
Hanging with Gengar in a strange room. Thomasin is hiding in her carrier.
For weeks now I've been plagued by a thought. A worry. A concern. I feel pretty good most days now, as good as I have since Cats was in theatres, but I know that won't last long term. I know that some day is going to be the best day I have left, and after that all that remains is a slow decline.
In just under two weeks, I have a CT scan to see how I've responded to my first round of chemotherapy. In about two weeks, I expect the results will be available. And in just under three weeks, I expect to have them explained to me, in great detail, by my oncologist.
I feel fantastic, and I expect a good result, but cancer is a tricky foe and mine is a fairly rare and poorly understood. So I worry about the short term. And I worry about the long term. The first should be fine, but the second is a certainty (ignoring the surgical option, which itself isn't a sure thing and is dependent on the short term results and I don't think about often because it is itself a whole new assemblage of horrors).
I'm fine. Honestly, I'm thriving. I've never been so on top of my hobbies, in control of my day to day life. It's not a feeling I'm used to. But I know it's temporary, both because treatment must progress because we are working towards the surgical option, and because even with the best treatment available, my care is still palliative. I'm under seige, and there may be no help forthcoming. We hold out as long as we can, but one side will break.
Photo from 15 minutes before sunset at Woodland Beach.
From the comments
James Petrosky: This is significantly more bleak than I meant it to be. I'm not changing a word, but know that my mental health hasn't been this resilient since 2010. My medication is the right one, my levels are good, I've done my time in therapy and have a good team in place now. I'm not suffering, nor am I avoiding my problems by overworking. Things are going well. But there's simply no way for me not to be constantly cognisant of my own mortality at all times. And it's been this way for months. Given the situation, it's fine, I have a good team supporting me, after all. But it is a lot.
Its been a suboptimal couple of days. The new chemotherapy drug, Avastin, has new and exciting side effects that I was simply unprepared for. Avastin's purpose is to starve tumors of blood vessels, so it's a very important part of my treatment, but in doing that (I think) it's been giving me neck stress headaches. Yesterday, I made a delicious chilli, and ate too much of it. A mistake I hope to never make again, because the side effects have been making me suffer all day. I haven't been able to keep down over the counter medicines to help with any of the symptoms (I've called the hotline, I'm not in danger). I see a doctor for symptom management next week, as well as my oncologist, so these problems will be addressed soon.
To compound my difficulties, I've had two long phone calls - one, yesterday, with the cancer centre's social worker and mental health generalist, and while its fantastic to know (and like) my mental health professionals, my personal, pre cancer, history is heavy enough, and discussing how its evolved since August was draining before the side effects got mixed in. Today I spoke with a home care coordinator, mostly as an intake appointment, but we touched on the evolving nature of my needs.
Friends, if this has been too much, duck out now. It's fine, I love and care about you all, I need to share this but you don't need to see it.
Right now, my needs are very basic. I need PICC maintenance once a week. We touched on how pain management tends to go, and the role home care nurses play as people move from lighter opiates, to more serious ones, to long acting ones to pumps, and how keeping good records on use makes it easier to justify stronger medications when the time comes. We talked how more time in bed can lead to bed sores, the early warning signs and the waitlists for PSWs and physical therapists. We talked end of life, mainly the where of it. Not because it's imminant, but because I have all my mental faculties now and need to be thinking about these things.
It's been an exhausting few days. And side effects have stolen some of my precious good days. But we soldier on. The chili was perfect, I've learned that I should be grazing rather than taking large meals, Thomasin has been paying her rent with wonderful cuddles, the birds and squirrels have been a source of delight all day. It's been a tough few days, but I've had much, much worse, and the next few days are hopefully looking up.
From the comments
James Petrosky: I wouldn't have written the hidden paragraph if I wasn't comfortable talking about it, but please either nest your comments carefully or message me directly. I'll get to you all as I have the energy.
James Petrosky: If you were close to me during any of the times my depression and later bipolar disorder flared up, you know I have no problem discussing difficult health issues. I have similar intentions here, serious health problems affect us all and need to be better normalized. I find Dave Warnock, a long time atheist/secularist activist who was diagnosed with ALS a few years ago, and has been very public about how that's affected his life, from diagnosis to end, to be inspiring and more than a little bit of an inspiration for these posts. His Dying Out Loud was important to me before all of this happened, and has taken a new importance since.
I have not accepted end yet. I'm very hopeful about surgery, and feel like I'm due for a win when it comes to the outcome of that surgery. But it's been an emotional couple of months, and the hardest week since I started chemo, and friends, I have no intention of hiding this messy stuff for you.
