We should all chase our dreams and try whatever abominations entice us
The following was originally posted October 26, 2023
On the weekend, I saw an ad for an Arby's abomination. I was able to resist until today>>. Arby's does not make abominations that taste good. Or even like food. At least they had fountain Cherry Coke though.
It's been a lot of less than stellar news out of hospice lately. In time, so long as I intend to remain honest (and I do), that is inevitable. I have low days, I feel the pain of loss of my outside life. But I mark little milestones, celebrate little pleasures, and do my best to be a little silly every day.
I don't always succeed. Succeeding isn't the point. Remembering that I have tried before and can try again is whats been keeping me going.
I love a brilliantly foggy morning almost as much as a spectacular sunset, and today was one of those mornings. The problem is that sunrise is early. Today, however, my night nurse happened to notice I was awake and that the sky needed to be witnessed.
Ingrid, the mastermind behind this whole adventure, took the first photo. It's facing out a window the same direction as the one in my hospice room. The window immediately faces a support building that houses things like the emergency generator, and is surrounded by staff parking. Trees surround the lot, all are hidden by the thick, beautiful fog. It was mesmerizing.
The third photo is the same window, just closer to see more of the tree and park around the parking lot. The second photo is my nursing team for the day. It's unusual for me to be up early enough to see everyone at the same time.
I went on an adventure! My brothers and a childhood friend made it up the Elliot Lake lookout to check out the autumn leaves. The sunlight didn't agree with us much as it could, but the sky made up a lot.
By the end of the trip I was wiped out, energy wise, but this is the longest I've been out of bed in perhaps a month, which is exciting, because Thanksgiving is next week and I'd really like to partake. And with more careful planning, that seems much more likely than it did yesterday.
The first photo looks out over the main section of Elliot Lake, on the far right is Elliot Lake itself, where the hospital, and hospice, is. Lake Huron's north channel and Manitoulin Island are visible in the far distance (if there are enough pixels).
I had the energy to make a low energy video this morning! It's all health updates (mostly).
Gangs all here ❤️👻
Sometimes, surgeries go exactly how they're supposed to.
Today I have surgery to replace my NG tube with a port in my belly that'll do the same. I look forward to losing my signature feature from my face from my hospice eon.
There are risks. They're low, but higher in a case like mine. But I'm as hopeful as I've ever been, and will see you on the other side
It's been a lot of less than stellar news out of hospice lately. In time, so long as I intend to remain honest (and I do), that is inevitable. I have low days, I feel the pain of loss of my outside life. But I mark little milestones, celebrate little pleasures, and do my best to be a little silly every day.
I don't always succeed. Succeeding isn't the point. Remembering that I have tried before and can try again is whats been keeping me going.
In April, I finished what would turn out to be my final cycle of chemotherapy.
In April, I was hospitalized in Midland, Ontario, for the first time for a partially obstructed bowel.
In April, I finally relocated from Midland, Ontario, my home for a decade, to Elliot Lake, Ontario, my parents' home for the same time period, and a place where they could assist in my increasing care needs.
In July, the obstructed bowel reoccured, canceling my Great Canadian Roadtrip Adventure, landing me back in hospital.
Briefly, for a couple hours, I was clear of this condition. But it quickly returned, I returned to hospital, and we made the difficult decision to end most interventions and transfer to hospice.
It is now late September. I've been in hospice for 76 days. I called the apartment I moved into back in April home for 76 days. I've lived in hospice half my time here.
I don't really know what to think or make of this, but I've had some fudge procured to celebrate, for a milestone is a milestone, even when it's a confusing one.
Halloween is the second most important day of the calendar year (second only to August 2nd, my Cancervercery). So important that the collage I constructed is chaotic and wonderful compared to what's come before.
I want to see another Halloween. Halloween is my present stretch goal at 112 hospice days, if I make it past Thanksgiving I'll make some plans for it.
I'm going* to see another Thanksgiving. I'm going to enjoy the best turkey drumstick (with the crispiest, best spiced skin) and pumpkin pie (with real whipped cream). Obviously, I'm sharing that turkey with the poodles. Thanksgiving is at day 95.
Today, I've lived in hospice for 73 days. I've been in hospital longer, but we count from my happy hospice home, the place all you wonderful people came to visit me and brighten my life. And here's hoping the second best holiday gets to do the same.
*In case error, enjoy an autumn sunset with your favourite seasonal drink. I'm fond of pumpkin spice ice caps, cellar temperature Guinness (the zero alcohol is excellent and what I'd be drinking), extra chocolatey hot chocolate, vanilla porters (any brand, alcohol free or otherwise), Coke (obviously), or a perfect glass of ice water (ideally sourced from the Canadian Shield, but not required). Repeat annually as memorial as desired.
After a long hiatus, Thomasin finally made it back to hospice yesterday! Her first visits were very tentative, and it took her ages to leave the kennel. This time was more of a "to hell with these bars, there's exploring to do," and much exploring was done.
Today she really showed off her gregarious personality, love of exploration and just a little bit of daring. The exact combination that brought her from a successful street beggar cat in Balm Beach to become the chubby, hqppy well cared for house cat she's bedom these years later.
It's nice to know that she's still got all those skills, though.
She's never been a grudge cat, so if she happened to be holding a fridge for moving her from the only home we've ever known (Balm Beach) only to abandon her shortly after for the hospital, she was over it in fifteen minutes of exploring and several cat treats. I think that's just how long it took her to calm down. Hopefully next time she's sleepier, and the weather is cooler, and we can share that little nap.
If I'm going outside, but not leqcinf grounds, I say I'm going to the courtyard. It isn't really a courtyard, a small garden seperates the chapel exit (which is closer to the elevators, too) from the main entrence and exist, used by general admission, emergency, and all other patients. The garden offers some privacy, some quiet, although its frequently broken by people using the exit as an exit.
During the high summer, the heat in the courtyard was strong. Surrounded on two sides, with the other two hardly open, the heat could build. To a lapsed chemo patient like myself, that heat was desirable, but occasionally overwhelming. But there was plenty of shade on those dog days of summer (often literally) and those days were magnificent.
As the sunsets have marched steadily West, outside the angle I can see from bed (the change happened so fast I barely noted it, but I know I stopped talking about their magic and the importance of daily observance. ADHD recall is a real thing, after all, and apparently you can forget your own star). And the sun has decided to hang low in the sky, like a bauble I can nearly reach.
The sun hanging like this, and the long shadows it causes to fall, is my favourite time of year. The weather it brings, and the harvest festivals, and the flavours (I'm already waste deep in pumpkin spice, and I didn't even like coffee until last month) are all the greatest. But the way the sun hugs the horizon most of the day, taking a lazy trip low into the sky.
In the courtyard, in the afternoon, there's no escape from the sun. The courtyard is under direct sun until it falls far enough that emergency itself provides shade, when the sky itself is exploding in colour, and maybe someday I'll take a sunset hidden like that, but these days I have a hallway I can share, and sometimes do.
These long shadows are nothing like the kilometer long shadows Tiny Marsh used to provide me. But they're still beautiful, and still remind me of the unknowable, unrecognizable part of everything. Of the little bit of unknown and spooky we love about the season. I think the harsh winter of. Elliot Lake would render my little courtyard too cold for all but the smokers, and spring the joy of sunshine and the plants recovering. But I shouldn't be seeing those. And that's fine, the geese and shadows returned to me one last time, and we accept our little blessings.
If I'm going outside, but not leqcinf grounds, I say I'm going to the courtyard. It isn't really a courtyard, a small garden seperates the chapel exit (which is closer to the elevators, too) from the main entrence and exist, used by general admission, emergency, and all other patients. The garden offers some privacy, some quiet, although its frequently broken by people using the exit as an exit.
During the high summer, the heat in the courtyard was strong. Surrounded on two sides, with the other two hardly open, the heat could build. To a lapsed chemo patient like myself, that heat was desirable, but occasionally overwhelming. But there was plenty of shade on those dog days of summer (often literally) and those days were magnificent.
As the sunsets have marched steadily West, outside the angle I can see from bed (the change happened so fast I barely noted it, but I know I stopped talking about their magic and the importance of daily observance. ADHD recall is a real thing, after all, and apparently you can forget your own star). And the sun has decided to hang low in the sky, like a bauble I can nearly reach.
The sun hanging like this, and the long shadows it causes to fall, is my favourite time of year. The weather it brings, and the harvest festivals, and the flavours (I'm already waste deep in pumpkin spice, and I didn't even like coffee until last month) are all the greatest. But the way the sun hugs the horizon most of the day, taking a lazy trip low into the sky.
In the courtyard, in the afternoon, there's no escape from the sun. The courtyard is under direct sun until it falls far enough that emergency itself provides shade, when the sky itself is exploding in colour, and maybe someday I'll take a sunset hidden like that, but these days I have a hallway I can share, and sometimes do.
These long shadows are nothing like the kilometer long shadows Tiny Marsh used to provide me. But they're still beautiful, and still remind me of the unknowable, unrecognizable part of everything. Of the little bit of unknown and spooky we love about the season. I think the harsh winter of. Elliot Lake would render my little courtyard too cold for all but the smokers, and spring the joy of sunshine and the plants recovering. But I shouldn't be seeing those. And that's fine, the geese and shadows returned to me one last time, and we accept our little blessings.
After two months of largely stable physical health (and stabilizing mental health), I've started to notice a real decline in things. Had you seen me until the start of September, you might not have even noticed anything was wrong, physically. Early on there was a sepsis scare, but since then it's been relatively clear sailing.
In the past few weeks I've needed to spend a lot more time resting. It started by just requiring me to be off my feet more of the day, taking it easy in the hospice suite, but more and more I'm bed bound.
Fortunately I'm still able to create nonsense from here, and watch the trash tier movies I adore, and continue to make something of all the moments I can capture.
My train is slowing, coming into its final station, but that's still some ways away, and I have much still to partake in and try. Just, slower, less energetically, and from a comfortably reclined position.
A week or so ago my corgi pal Minnow came back to visit! It was a bright spot in an already great week, so it slipped my mind among the bear sightings (no photos, sadly, too quick and bumbling for me) and shooting stars (also too fast) and such.
It's perhaps no surprise that even though for months all I hoped for was the cytoreduction HIPEC surgery, I no longer think about it. Not burned into my brain, those most stressful two weeks of my life, when I knew it was going to happen, but before I'd submitted the forms, signing away potentially seven organs or partial organs. I remember a specific horror, but indirectly, at the days leading up. I only think of it when I see the scar, and my missing belly button, and I've learned not to look.
I suspect I'd remember things very differently had I any recollection of being told that things had failed. That the cancer was my doom. That I would leave the hospital, but that my time was more limited than we thought and I'd never really get to recover from the surgery (the only bit of luck I retained, the cancer has beat me, but it took longer than a couple months).
But all I remember is my hatred for the nasal-gastric tube (the same one that sustains me now, which I've grown to love), arguing with the surgeons about it, freezing at night (the origin of my beloved goose toque) and the greatest luxury I've ever had the joy of experiencing - ice chips on a nothing by mouth diet.
We all wish my time at Mt. Sinai went differently. It's the difference between a life and an absence. But it didn't, and that thought is one of the truly forbidden thoughts I've never, nor will ever, entertain. It's a fixed, unchanging, point in time. Like diagnosis and that final trip to emergency that put me here.
This is all traumatic. Very traumatic. My mind has clearly done things to protect itself. Had things gone differently, I'd have spent the last year working through it. But instead I've spent the social worker time working through end of life concerns, preparing for where I am now.
I hesitate to publish this, for the first time ever. I'm as okay as I can be in my state, I've made my peace with the things I need peace with, and I do my best to honour each new day I have. Like all other scrap book posts, this is about joy, and finding it everywhere, it's just harder sometimes.
When I was discharged from Mt. Sinai, my destination was sadly set, and I could have chosen any path to get there. I chose adventure and joy and life and zoo dates and fish and chips and pho and antiquing and Squishmallows and the sun hanging low for hours in the autumn sky. I chose all of you over despair and defeat and, likely, an earlier trip to hospice. Hoapice was inevitable, but writing about it is a choice and a victory
Growing up where I did (the forest, the swamp, the bedrock, no farmland), I missed a lot of experiences that were common to a lot of friends. This is no complaint, growing up with the woodland creatures and awesome knowledge of the true age of things helps define me to this day, but I didn't see a lot of corn or pumpkin or any other crop, Halloween associated or not.
All I got to see were the occasional stalks of corn in a neighbours garden, rarely more than a dozen plants. One year we didn't get to carving a pumpkin, the whole thing (with seeds) ended up in the compost, the eldrich horror that took over the back yard was as close as I could ever got to visiting a pumpkin patch. People planted other gourds and there were always displays at the grocery store, but it wasn't Hollywood, it wasn't the TV Halloween special.
Last fall my my friend Claire and I set out to try and fill this gap in my experiences. We researches pumpkin patches with selections of gourds, looked at the fields to find one appropriate for my state (I still had most of my energy, but the fall was running down, I was getting close to restarting chemo, and I couldn't run the risk of actually getting lost). Wagon rides were an added bonus.
We found what we were looking for, but in an uncharacteristic moment picked a location much, much too far for our day trip, and instead quickly decided on a different farm near Alliston.
This farm had a field of beautiful, delicious squash, some photo opportunities, plenty of farm goods to buy, but no maze. It just had a path through the corn. My maize maze dream remains just a dream.
After loading up on squash and buttertarts and sparkling fruit juice (most of which I accidentally froze and didn't get to enjoy, further proof the trip was cursed), we visited a little Friedrich Banting's home and failed to uncover the secrets of its giant concrete sphere. We visited a little English store (called the British Shop) in Allison, where I failed to procure a deerstalker in my size, but did get a lot of sausage roll, before moving down the highway to Shelbourne for lunch/dinner at a place called The Tipsy Fox (chicken Caesar wrap, very good).
I got my pumpkin patch, wagon rides, cider and snacks. I never, and still haven't, found my maze. And at this point, I never will. And there's beauty in that, it was a perfect day that stubbornly refused to become perfect, and instead became what I needed from all my little adventures: a distraction from the horrors of daily life and a memory to escape into when I need it. I cannot explain why this particular memory is so strong (I can almost step into it, and I see it all so vividly), but I'm glad to have had it, and especially to have shared it. Thank you, Claire, for a silly fall day that went perfectly by constantly going silly.
The Toronto Zoo is one of my partner, Alicia's, favourite places in the world. And over the course of our relationship, in the various forms it's taken, it's become one of mine as well.
As friends, it was a group outing we'd almost always both attend. Alicia, because she was the driving force behind nearly every zoo trip I ever went on. Me, because I went with the flow and an afternoon with friends and cool animals was always a delight. These trips were usually taken in the heat of the summer (now, as a zoo expert, I know know that summer is a fool's time to visit the zoo, it's full of children and the animals are all asleep, but, as groups, this is the time we had together).
Years later, and after many more trips, Alicia and my first real date was to the zoo. We knew we were a thing, of sorts, the day before. We'd had our conversation, started to define the nature of what we would be (which lasted about a month, before we realized we were just another romantic couple (attached, polyamourously, to another romantic couple, Alicia and her wife, Catherine)). That was the most memorable trip to the zoo I've ever taken, although I'll be damned if I remember much of the animal content of the trip. It was late August, 2018, it was hot, and the animals were all sleepy. The parrots were entertaining, monkeys rambunctious, and we drank so very much bluraspberry slushy (because we always did). The zoo membership discount was a compelling and silly argument to always have more, while the powerful daystar beating down upon us was a powerful and overwhelming argument in favour of hydration by that delicious fruitish flavoured drink.
The big cats are still an impressive sight in the heat of the sun. They're what I remember best from that trip. Basking all together, the lions especially retain their majesty and wonder more than most other animals, although a pack of wolves (which we did not see that day) can have similar effect. The tigers are somewhat less impressive, but sprawled out in the shade of their enclosures, but still radiate their beauty. Alicia and I are fundamentally cat people (even if I'm a pretty even split on dogs), observing the big cats do anything, even if it's as close to literally nothing as possible, is still a treat for us. Its an opportunity to pretend that our house cats are like the big cats. Thomasin is a Sumatran tiger, stalking the underbrush. Nemo, Alicia's cat (a sleek black house panther if there ever was one) is most like the clouded leopard, the way they both move through the trees (or bookcases, in Nemo's case) is similarly mesmerizing.
The zoo is a place that I will always think of as an us place, maybe even The Us Place, a place where we could always just be a couple. We haven't always been able to be out, career's and religion don't always agree with polyamory (or our bisexuality, but mercifully that was rarely a concern), but the zoo was far enough away from home that it was always safe to just be us, and to be an Us.
The zoo is Alicia's natural date location. A good date doesn't have to include the zoo, but a great date is going to have a targeted zoo visit. One where you pick a section and thoroughly explore it, planning things so you get to see a feeding (ideally the otters) and maybe a zookeeper talk. The whole zoo is too big for a day, and it took me a long time to realize this. The whole zoo is for tourists and families and school outings. A zoo date visits a third of the animals, then departs before you're too exhausted to enjoy a nice dinner.
Toronto has all the dinner options one could want, and we'd generally pick some nationality of food that's harder to get to in the Midland area, often stopping for dimsum before the zoo or whatever east Asian option struck our fancy as we were leaving. I generally did the legwork picking some restaurants so we'd have an easy time dealing with choice paralysis on the way home. We always ate well.
During the pandemic, these outings became how we saw each other. Which so much outside time, we didn't have to stress as hard about transmission. This became even more true after I got diagnosed with cancer and started chemotherapy. The outdoor portions let us be close, because I was always immunocompromised and Alicia is a primary school teacher. A difficult combination any time, but especially with covid-19 still surging. These outings are where we got to play pretend things were normal, and have our dates.
After the first round of chemo ended, and my surgery failed, we started taking a lot more risks. Zoo trips became more normal and frequent. We spent more time inside the pavilions, greenhouses and other indoor spaces. At the worst moment in my life, we had a special place to visit, to spend time at, and to enjoy the big cats and fatrounds. It took months before I was well enough to make the trip, but it was a highlight of that adventuring period in my life.
The Toronto Zoo did not start as a special place to me. I grew up too far away, it was a neat commercial I'd see on TV sometimes, on par with Marine Land and the occasional cross border ad for an American zoo or aquarium or African Lion Safari or similar. But it's a special place to me now, one of the most special and important in the world. Home to most of my favourite fatrounds, all of my favourite non-house-cats, and more memories than I'd care to count.
Of all the adventures I can no longer have, it's the one I'd jump at first for a do over. Fall's nearly here, the weather is just right for the large carnivores to be active, and soon Alicia will have a small break in her work schedule, just after report cards are in (school just started a week or two ago, but that's how school does), and we could have one more perfect little afternoon.
Today was a wonderful day because my Poodle Pals (and parents) came to visit me in the hospital courtyard (actually just some benches next to a little garden next to the main entrence/the emergency entrence. It's a small hospital.
Last time we had Bessie visit me in my hospice room alone. Being alone in a strange place stressed her out so badly that she wouldn't interact with me much at all, which was heartbreaking for me.
She's a silly girl so we were all pretty sure it was the situation, and not that my best poodle had suddenly rejected me, but the confirmation was still deeply appreciated and freed me from much anxiety.
Seeing them run and play in the sun and beg for pets was also very good for my mental health. But even such a little outing, just to outside the hospital, drained me much more than I anticipated. I've been in this end stage for months now, and it's really starting to wear me out.
But I'm still here, and there's little more joyous and wonderful than Bessie excitedly running from person to person, every one her favourite, to catch an ear scratch, before moving on to someone else.