It's hard when you're condition makes you need to lie down so much that lying down itself is uncomfortable
James Petrosky: Starting with chemo, I've spent 12 days mostly in bed (including one night in a gurney that was really bad). But I just don't have energy
We're on the move!
James Petrosky: *Thomasin is in a carrier when we're actually on the move
**Stefanie Culp: What a solid navigator!
Sarah Marie Yurkiw: I hope it all goes very well.
Tu Biederman: Thomasin is SO CUTE I want to cry
Beverley Singer: She looks like she’s enjoying the ride.
James Petrosky: Beverley Singer she's traveling much better than I expected
Brennan Moline: So much trust in you ❤️
Ryan McGill: This is a GORGEOUS picture.
I'm pretty excited about moving, but Thomasin? She doesn't like change. She had an anxious day today, and her week is only going to get worse. Her anxious behaviour is cuddling, so I do okay
I've been discharged, I'm home. We're pretty much where we were on Monday. I've got instructions on how to manage this new condition, but managing is all there is to do. There is no cure, no further treatment. This is just another part of my life now.
Not sure if I'm more tired of the pain or being extremely high all the time.
James Petrosky: Someone in the room has decided that we would all love to hear their country music. I made sure to pack multiple pairs of headphones so I wouldn't accidentally expose anyone to dinosaur podcasts. I'm extremely frustrated but unable to do anything about it
Not sure if I'm more tired of the pain or being extremely high all the time.
James Petrosky: Someone in the room has decided that we would all love to hear their country music. I made sure to pack multiple pairs of headphones so I wouldn't accidentally expose anyone to dinosaur podcasts. I'm extremely frustrated but unable to do anything about it
It's not all bad, my doctor's ordered full fluids lunch included a doctor's ordered vanilla ice cream
James Petrosky:And I got tea! Coffee this morning was pretty disappointing. I should have tea after meals more, I always really enjoy it in hospitals
James Petrosky: Ron Bedison I'll get into the habbit for a few weeks at a time, then go visit someone or something else to break the cycle, and forget I was doing it. Before this round of chemo, I was having tea and cookies most days in an attempt to eat 5 smaller meals. Chemo ruined that one.
Becca Simmons: My more rural family always drink coffee after a meal. Like, always. It's honestly really nice and idk why I don't do it except around them
James Petrosky: Becca Simmons my parents do the same, and the way they make coffee it would be so easy to make a cup of tea, too, but I never ask. It's a nice little ritual, especially if you pick your deserts to go well with coffee
I'm not having the best day
James Petrosky: I had the tube after surgery. The tube was my least favourite part of my time in hospital post surgery. I don't think I've ever agreed to something I wanted less than the tube this time
Mica Richard: At least you're a cute elephant? Seriously though feel better ❤️
Last night, at around 9PM, I ate a slice of pizza. By the time I was done eating, I knew something was very wrong. My whole abdomen hurt with an intensity only beaten by my pre diagnosis cancer. I should have gone to the ER at this point, but went to sleep instead.
I woke up in still significant, but much reduced, pain and knew I had to go to the ER. I was reasonably sure that what was wrong with me was a bowel obstruction. Tumors along the intestine are a common cause, and unfortunately I have those.
It was a partial bowel obstruction. The doctor knew it as soon as he read my history. Unfortunately proving it with tests took the whole day.
I've been admitted, hopefully not for too long. Since my obstruction is partial, just letting my bowels do their thing, while controlling pain and keeping me hydrated, under observation, might work. I haven't been spoken with about other options yet.
Guess who's been in the ER all morning! When I finally get out of here I need to pick up a new laser pointer and some catnip because it was that friggin pizza that did it to me
James Petrosky: No idea what's wrong yet, should have realistically come in last night but I was too tired to make decisions. Have had an xray or two.
James Petrosky: I've been between 5-8 pain for 16 hours now and that's getting a bit exhausting
Mareile S. Håland: Dr Thomasin MD! 😮 She tried to warn you!
Cycle 12, Day 5
This one collects a whole month of photos.
I'm glad this round of treatment is done. I'm exhausted, I'm so sick of feeling sick all the time. It feels like the side effects (best case scenario, side effects) never really leave. I'm so run down. I need a break - a real break. And I kind of get one.
I feel good this afternoon, not great, but good. I had something called hydration yesterday. For me, it's a litre of IV saline over four hours. Hydration keeps me up all night, because I need to use the bathroom. The need to use the bathroom keeps me on the edge of sleep. Last night was all nightmares. This afternoon, I've recovered. I'm tired, but I went grocery shopping.
The break I get is from chemotherapy. I need a break from it, my body needs to recover. If I don't take a break, my quality of life will get too low and, eventually, I'll refuse treatment. I want a long break. Last time I had roughly six months. My oncologist doesn't want me to take that long. Every day I'm not receiving treatment, I'm losing ground to the cancer. It's the worst optimization problem I've ever had to think about.
I talk to my current oncologist for likely the last time in mid May. It'll take a few weeks to get me fully transfered to an oncologist in Sudbury. And a few more weeks after that to schedule treatment. That's likely what my break looks like. The six month break did very little to reduce the intensity of the side effects I was feeling. It was almost as if no time had passed. I've had a hard time making myself go to treatment for the last few months. I think I'm likely to refuse further treatment before the cancer spreads somewhere serious. I'm not there yet, though.
I don't get a break from life, though. I don't have nearly as much as I used to left, and I'm going to get rid of even more, but I packing is still exhausting. Now that I'm off chemo, I'm hoping I recover some of the energy I used to have so I can get stuff done.
James Petrosky: My hair hasn't started to come back yet, but the facial hair really has. I'll take the small victories, even if the texture is different than it used to be
I made a pizza and Thomasin sat on me and now my pizza is cold and still largely uneaten. Cat law can be cruel
James Petrosky: It doesn't make sense, it was Hawaiian, and lots of people may not like it, but it's her favourite. Normally the play would be to jump on me and steal a whole slice from the plate
James Petrosky: I can't even call her a criminal, she's being a law abiding citizen
Not even past the main chemo side effects and already consumed by moving anxiety. I coulda used a day, you know?
James Petrosky: Not looking for help quite yet, I'm going to do another purge pass first.
James Petrosky: Wish I hadn't been talked into hydration, it keeps the treatment train going until Sunday and I don't have the mental fortitude (but it's doctor's recommendations, so I'll try)
I'm home from the cancer centre. While I still have the bottle for the rest of the week, this is the end of this treatment series. It's the last time I'll visit the cancer centre. I have one final followup appointment before I transfer to a new oncologist.
I thought about ringing the bell as I left, and absolutely would have been welcome to, but it didn't feel like treatment was over, because it'll never be over, and couldn't do it. If I get another break, I hope I'll take my chance.
I'm a sentimental person. I cannot describe the confusion of emotions I'm feeling. The cancer nurses are some of the kindest people I've ever met, I hate that my health necessitated our meeting, last year I was so ready to say my goodbyes and never see any of them again because I was going to live, and now, after another very hard round of chemo, a much more bittersweet goodbye, with the promise of a new chemo centre and more difficult rounds of treatment.
James Petrosky: I very rarely think about the R word (not that one, but I guess also that one), but I am today, and it isn't easy. I wish I could articulate it all better. But it's impossible.
James Petrosky: Frankly I'm being dramatic for the fun of it, the word remission has no special power.
Holly Kay: Love you cousin!
Rebecca Liddle Blair: In the work I do, I am often meeting people on not their best days or times; still, I am grateful for the experience and the time together. I’m guessing the nurses and care professionals that worked with you probably feel that way about working with you as well. It’s a different kind of relationship with complicated feelings to go along with it.
Brennan Moline: I am also a deeply sentimental person, despite my best efforts to avoid it. My parents still tease me about how I cried when they got rid of our old fridge or old car. When I left for college, I cried in the bathroom, hard. Sentimentality always felt like a curse.
Brennan Moline:I don't know that it is, anymore. I don't know how you feel about sentimental moments, but the fact that human connection can be so strong that we can miss it before it's gone feels both deeply beautiful and deeply sad.
Brennan Moline:I'm sorry I made this about me (part of me wants to delete this comment), but I feel what you're saying
James Petrosky: Brennan Moline my new experience is ending an interaction with a friend, both knowing it's the last time. My knew surreal experience is knowing that this is a skill, and one I'm going to get fairly good at fairly quickly. So long as I'm only a little awkward about it, I hope we can focus on the beauty in a strange and terrible situation.
James Petrosky: The way society handles grief and related emotions has never really worked for me. And I didn't outright say it, but this is all partially about grief. And for me, talking about grief in a personal and largely secular/nonreligious way is very important. Which may not have been your intent, but it's how it was taken.
Brennan Moline: James Petrosky Absolutely agree.
Successfully found some medication! But now I'm at the hospital all day
James Petrosky: Complication! Somehow my refill disappeared, even though the order couldn't have come in late if there wasn't a refill, this morning there is nothing to transfer. So here's hoping my oncologist is picking up today
My pharmacy didn't get my magic nausea medicine in on time. I am not having a great day.
James Petrosky: Considering delaying treatment if we can't find any. I have no desire to spend a week throwing up.
Trying to arrange four days of hydration (which I usually refuse, but my oncologist wants me to do this time) but they've changed how its done since I got it in January.
James Petrosky: It used to be all homecare, but now I have to go into a clinic once a day and disconnect it myself at the end of the day. And presumably make a second trip to the clinic Sunday for them to take out the connection to my port.
James Petrosky: Friends, this is the only part of my care where I directly receive care from a private medical company. It's always the most frustrating and least human part of my treatment
A day of adventure! But uncharacteristically, I didn't take a lot of photos. The adventuring was centred around Goderich, Ontario (which is a pretty town with a beautiful Lake Huron waterfront, a roundabout at the centre of town with a courthouse in the centre, and some pretty waterfront industry (to my eyes), also a lighthouse which was on the todo list).
I met a friend for lunch in Fordwich (a tiny town I didn't know existed until yesterday). Then traveled to Goderich, then up to Kincardine where I met another lighthouse and experienced the sublime beauty of the world waiting for possibly the worst hot chocolate I've ever had. Finally I traveled to Hanover for dinner, which I had at a casino, so I guess I also visited my first casino today. I won by not playing.
Much more importantly, I saw so many cows (with their poodle sized calf), dozens of sheep with their little lambs, a field full of mini goats (a highlight of the day), many dogs and, a kilometer from home, a cute tabby cat. I regret to inform you all that I still have not met a corgi.
I know there's no controlling when you're going to be struck by the beauty of the world and the finality of our mortality, but a Tim Hortons in Kincardine with a knock off Nickelback song playing is a touch ridiculous
(We later figured out the song must be That Song by Big Wreck)
James Petrosky: I spent half an hour looking out over Lake Huron (main body, not Georgian Bay) for over half an hour, but of course things come over me in the dumbest and least interesting place I've been all day
Ëmmy Smäll: first of all I love all of this, second of all Huron is the only Great Lake I haven’t seen yet but lakes always put me in a place I couldn’t attempt to explain but I get it
James Petrosky: Ëmmy Smäll I was out in that part of the province to have lunch with a friend I hadn't seen in a while, and the beach spot was specifically recommended. It was worth an hour trip out of my way
James Petrosky: But then I wanted to see a lighthouse and ended up further out of my way in Kincardine
James Petrosky: So anyways I can check off "have a good cry in a Tim Hortons parking lot" from my list of required Canadian experiences
Carolyn Coney: James Petrosky an incredibly Canadian moment (tm)
Someday I'll remember that just because all choices are bad, it doesn't mean some can't be much worse.
This is a post about Taco Bell
James Petrosky: This is not a political post, but you're forgiven for thinking that.
Christianne Manzano: This post is VERY disrespectful to the Steak Chalupa Supreme.