Listening to Ladies and Gentlemen we are Floating in Space (one of my top five albums)
Fucking around on Facebook
All at the same time. Which obviously means IT'S HYPOMANIA TIME AGAIN
From the comments
James Petrosky:I'm fine, there's no danger. Once I know it's happening it's pretty easy to counteract the impulses. I started sometime in the last week or so, it's hard to tell when I'm stuck in bed on chemo or stuck in my apartment on hydration, and will probably come to an end around the time I return to the chemo suite next Tuesday.
James Petrosky:It also explains why I've been having such a hard time sleeping, at least that's not a new chemo side effect
If there's an afterlife and I don't get to be a Doctor Who style immortal time traveler, hanging out with all eras of life on earth (and across the cosmos) I'll feel pretty ripped off
From the comments
James Petrosky:Don't promise paradise and fail to deliver the stegasaurus
James Petrosky: Hydration is something a lot of chemo patients get after treatment. We're hoping it helps me bounce back a bit faster, and especially hoping it takes some of the stress off my kidneys, because something is up with those fuckers and I don't like it.
Nancy Fallat: Wow, healthcare at home. That is so convenient. Glad you are getting lots of hydration. Does it show on tests that something is going on with your kidneys or is it something you feel?
James Petrosky: Nancy Fallat there was something in the blood test my doctor didn't like, my blood pressure was very high (150+/110+ for at least a few days), and I feel kidney soreness. I have an ultrasound next week.
Mica Richard: Your beard has reached Greek philosopher levels!
James Petrosky: Mica Richard fantastic! I also have terrible ideas about how the natural world works
Steph Nelson: You look cute
James Petrosky: Steph Nelson I used to favour a clean cut look, wish I'd gone for something scruffier earlier. Imagine if I looked like this and hung around with a schnauzer (or Bessie the scruffy poodle in all my profile pics)
Steph Nelson: James Petrosky scruff buddies!! ❤️
I've always been a collector of things, and my CD collection, long paired down from its largest extent, is the most precious to me.
I just went through it, deciding what was worth one last listen* before the donation bin.
I am not okay.
From the comments
James Petrosky:*I have absolutely everything digitally, and haven't even owend a CD player outside of my car for a decade. It doesn't make sense, it doesn't have to, some things are just hard.
Lots more in suite side effects today. Had to pause treatment a few times. That's happened before, but never this much. I hope it's not a trend.
PICC's gone, though. They pulled all 20 some cm out all at once and I didn't even feel it. Once the access to the port has been removed, after the take home bottle has been removed and I'm through hydration, I can have my first plastic wrap free shower since September 14, 2023.
Hydration is just running saline through the port to help clear remaining chemo drugs from my kidneys. It's fairly a common part of treatment, I was just bouncing back quickly last time so it wasn't necessary.
Lots more in suite side effects today. Had to pause treatment a few times. That's happened before, but never this much. I hope it's not a trend.
PICC's gone, though. They pulled all 20 some cm out all at once and I didn't even feel it. Once the access to the port has been removed, after the take home bottle has been removed and I'm through hydration, I can have my first plastic wrap free shower since September 14, 2023.
Hydration is just running saline through the port to help clear remaining chemo drugs from my kidneys. It's fairly a common part of treatment, I was just bouncing back quickly last time so it wasn't necessary.
From the comments
James Petrosky:I'm sad about this, but you can't wear a mask properly with as much beard as I currently have. And my immune system is already as bad as it's ever been, so it's just as well
I see my oncologist at 0915. I have to be there two hours early to visit the vampires and get some bloodwork done. It's a 45 minute drive under ideal traffic conditions, which won't exist on Monday morning at 0700. I got to sleep around 0200, and haven't gotten a proper night's sleep in a week.
We're off to a great start.
From the comments
James Petrosky: Ha! It is as I feared. 0915 was when I needed my bloodwork done to be ready for my 1115 oncologist appointment. Hopefully it warms up a bit so I can nap in the car, but I'm not hopeful.
Normally I get a slip with the appointment time and a note to be here early. For your first appointment in a chemo course you get a call and they tell you the times. Friends, I did not leave a not to tell myself which time I wrote down.
I said a few weeks ago that my cancer symptoms had become more noticeable than my surgery symptoms, and today's talk with the oncologist was a natural consequence of that. I see her again on November 6th, and return to the chemo suite on the 8th.
This is not inherently bad news. The CT scan showed no new tumors, my blood counts are good, there is no evidence of dangerous new mutations yet. I've simply been off treatment for over six months, and it's time.
I'll still be receiving the same chemotherapy cocktail, with the same two week cycle, and the same take home bottle. I am not excited, or looking forward to it, but at least I know exactly what to expect this time around.
I asked about future chemotherapies. There are an additional two varieties of chemotherapy regularly used for colon cancer (which is what I'm being treated for, although I have the related appendix cancer), I don't remember much about the third, but the second is largely similar to what I've been on so far, side effect wise. For me, it's comforting to know that the expected time my treatment options will last is longer than my prognosis, so I shouldn't have to worry about pain.
In the next month I need to get my broken tooth pulled, ideally quickly so it has lots of time to heal before my immune system crashes around cycle 3. I need to finally see my palliative care doctor and get those plans firmly in place. I need to get legal stuff in order. I need a port installed and my PICC removed. And I have one more day trip to make.
Leaving for the hospital
Masks are required in the cancer ward, which will be a comfort when I come back for treatment
Outside the hospital
Masks: great for keeping out germs, terrible for moustaches
Last night, while driving home from the art gallery on York road 27, because I over did it and was too hungry for the 400, I broke a molar in half eating a particularly crunchy chip. I'd love to go into a long, somewhat detailed explanation of how chemotherapy weakens your teeth and leaves you more susceptible to tooth decay and other damage. Chemotherapy can cause a lot of oral complications, the most common being painful mouth sores. But I didn't really experience any of that. And, with the possible exception of some mouth cancers, cancer and chemotherapy don't really affect your teeth (I don't know about radiation, I never recieved any and even if I had, it wouldn't have been pointed at my face).
This is a 100% self inflicted injury. At diagnosis, I had to change my diet pretty dramatically. I was the sort of person who did a good job getting my fruits and vegetables, my fiber. But with my compromised digestive system, insoluble fiber is not something I should be having. These changes were fine, largely sustainable and did not cause harm, but it meant my new standard diet was largely my comfort foods, both for dietary and psychological reasons.
Ten months later, in June, the stress leading to the surgery broke me. Since comfort foods were already normal (and since I genuinely didn't know if my guts would allow fast food ever again), I switched largely to junk foods and a lot of pop. But that was only a week, and had things worked out, we wouldn't be here.
But gang, the concept of long term planning is cut off for you, and you're pretty sure you can't fuck it up bad enough to develop, say, diabetes in the time left to you, you always get that pop (or drink that makes you happy). I didn't take care, because in most circumstances I don't need to take care*, and now I'm stuck at home all week eating soup. And I don't care for soup.
From the comments
James Petrosky: *not needing to care isn't necessarily a end of life thing. I know very well what I'm not going to want to consume once chemo starts, and know already that I should only have a burger if I have no plans for the next day (and am near home already). Both of these suck in their own way, but they aren't death.
James Petrosky: This tooth is dead, I haven't taken any painkillers for it at all. It was almost pulled last summer when it's pain level was similar to that of the cancer pain (a greater pain may exist, but it is beyond my capacity to imagine it). Waiting around hoping for a cancelation is more frustrating than the tooth is painful
James Petrosky: Also, big problem with groundwater that people round here on groundwater likely think is an advantage is lack of fluoride. My teeth were simply not as strong as they should have been
Tomorrow is the anniversary of Cycle 1, Day 1 of chemotherapy. And I don't have a lot to say about it that I haven't said already. It's a horrible medicine, but it's what's keeping me alive and going on adventures. At this point, there's simply no me without it, and that's just a fact I have no choice but to accept, and that's fine.
Last year, late at night, after the PICC had been inserted (one year anniversary today), after I'd had my little walk down to the breakwater and gazed lovingly into the void where either Wasaga Beach should be, or where the sun just departed from, I returned home and took these two pictures. Pictures I did not intend to share. Pictures just for me, so I could track how the disease and the treatment were affecting my body.
Honestly, a year later, I expected a much, much, more dramatic change. Chemo is one of those drugs that really scales with your bodyweight, so I know for a fact, from the exact same calibrated scale, that I have varied by about a kilogram this whole time (2.2lbs). But the photos match the scale. The change is largely in the hair, not the body.
From the comments
James Petrosky: For clarity, the photos with green hair and the blue shirt are from 2022, roughly 12 hours before first chemo. The photos with the cool Michael Myers shirt are from 2023.
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.
September first of last year was the first time I interacted with an oncologist. I did not understand what it meant to have two seperate teamns at this point. Was it a second opinion? Did I have to pick one or the other? I don't think what actually happened ever really occured to me, I was so profoundly ignorant that I didn't even know what questions to ask (even though I hadn't yet had a chance to ask the important questions - what is my treatment plan (a phrasing I've only learned recently), what is my prognosis, what does the next month, six months, year, etc., look like for me (and even if it maked sense to ask about some of those timeframes).
I had two oncology teams working together. They knew about each other from day one (even if communication was sometimes slow between them), they were working together (or at least towards a shared purpose). It was a tag-team treatment plan, two courses of chemotherapy then surgery, the whole time. I needed to give positive, written consent at every stage, but other than saying "yes, I want to undertake this treatment, knowing that it has risks, but is also the standard of care and the best/only chance to have anything approaching a normal lifespan. I had little say in things, ie I didn't have to pick one plan or another, because, again, there was always just the one plan.
I wish all this had been made clearer to me back then. Not the specifics about treatment, obviously, or even prognosis, because you actually have to have met your oncologist to learn that information. But if someone had said "you're going to be seeing a doctor in Barrie and a surgeon in Toronto, they'll be working together with you for your treatment" then a lot of confusion would have been evaporated, and I really couldn't stand the extra stress at that point in my life. But maybe it was obvious to most people that they'd work together on a unified plan. I've never cared for hospital dramas, I don't see this sort of thing in media very often.
Now, I sit on the other side of that treatment plan. The chemo part was extremely successful, shrinking the CT visible tumors and getting me to surgery, and if not for the pesky unknown prostate tumor, surgery was on track to be successful as well (its impossible to know, but from the surgeon's report everything else they found could have been attempted, there are still fail states down that path, but that is also where all the success states are located). Sometime soon I'll have to restart chemotherapy, which I have complex feelings about, but at least none of those feelings are the confusion I felt in 2022.
I've been off chemotherapy for nearly four months, and my treatment plan calls for three month courses of chemo followed by three month breaks to recover. My break was longer because I had done eight months of chemo and then had HIPEC surgery to recover from.
It's now time to plan the next six cycle course of treatment.
This is the face of someone with a surgical date in ten days. I'm scheduled for laparoscopic surgery next Friday, the 28th. This also means that my chemotherapy appointment for tomorrow is cancled, and Cycle 16 might last around a month.
The point of this procedure is to determine if I'm a candidate for the full HIPEC surgery. If I make it by this hurdle, I should get a surgical date sometime this summer. If I don't, depending on the specific reason, that's it. No HIPEC. And HIPEC is the only way out.
Next up is a pre op appointment Thursday.
But, for now, I'm not going to think too much about all that. I bought some pastrami, good buns and my favourite sourkraut (and a case of Coke) to celebrate tonight. Maybe I'll even watch Cats, it's been over a year since I've seen it.
Gang, I'm so tired. Tired of counting cycles. Tired of the side effects. Tired of living in a sort of constant existential terror.
I took a walk to the beach, roughly 400m, and found myself lightly winded when I got there. Walking back was the same story. I've been doing some basic yardwork, collecting leaves that fell on the patio stones mainly, and after three hours of medium-light labour I'm so exhausted I need a nap. I've never been the most fit person, but even at the peak of my cancer pain on the late summer I was still able to work (medium-heavy labour) fifty hour weeks without wearing myself out. It's a lot to get used to. And to add further insult, my nose has been running constantly for the last month. It's a known side effect, but it's gross and frustrating.
For the sake of my mental health, I need surgical dates to look forward to. I'm hoping I hear something this week
From the comments
James Petrosky: Most of the time I'm pretty comfortable with my mortality, but the anxiety and depression and exhaustion have a way of eroding the peace I've made and found.
James Petrosky: My personal nurse has been a tremendous help, though
Today was sort of a comedy of errors. I had some bloodwork done for my lithium, and the technician took two tries to get it right. No big deal, it's never happened to me before, but it happens. My PICC line was clotted, which has happened twice before, but this time it couldn't be cleared by running saline. It was taken care of and works properly again (the blue thing holds my take home chemo, which couldn't happen if it wasn't working) but that means they needed to run a temporary IV for the hospital administered chemo. Friends, it took four tries. I left with two IV bandages on each arm. But I got my treatment, and that's what matters.
From the comments
James Petrosky: Bonus other bullshit I've been up to! The pinkish one is a long finished project, but the purple one is brand new this week. I'm very happy with it
James Petrosky: I also have an ashtray, which runs off batteries. Blue LEDs have a much higher voltage drop than red, so as the batteries run down the mix gets more and more red, and then dims in a really pleasing way. But that doesn't come out in a still photo.
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
Gang, I hadn't realized how bad my fatigue had gotten until yesterday. In the full summer heat I used to be able to see twice as many exhibits as I did yesterday. It wasn't cold, but I had a chill much of the day. The immediate chemotherapy side effects aren't too bad (but I think they're getting worse), but these slower acting side effects that build cycle after cycle are really draining. Fortunately, the seasons are changing and its getting easier to do things.
From the comments
James Petrosky: Bonus fact no one wanted to know! Pretty much the only hair I have left on my whole body is on top of my head or in my dramatically depleted eyebrows. This fact occupies a lot of my brain time but never comes up and this feels like the place to share.
James Petrosky: Yes this includes eyelashes. Strongly recommend not removing your eyelashes, I get so much more stuff in my eyes now
James Petrosky: Another bonus fact! I adore sea horses. They're one of my favourite animals (most of my favourites are what I like to call "fat rounds" - beavers, wombats, capybara, not long delicate fishies) and I was super happy to be reminded of this statue
