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.
Forgetting to eat a couple meals and then consuming an enormous amount of caffeine leaves me feeling high and uncomfortable and cold. 0/10 just get regular high
Apparently yesterday was some sort of bipolar disorder awareness day. I was pretty busy with a full day of scheduled existential crisis about mortality to notice.
All I've got to say is that we're fucking human, and you can get hyperfucked if you're still writing us like we're magic weirdos with intense mood swings. Especially if it's for a dumb meme, that dangerous misinformation will spread for years.
We're human. I'd love to have a conversation about what depression or hypomania feels like if you're curious, but all you alls simply must stop spreading medical misinformation first.
James Petrosky: This sounds like a very specific call out. If is not. I didn't see any of my friends posting stuff like this. I did see lots of stuff like this in groups some of you frequent, though, and that's more than a little bit suspect
James Petrosky: bout me, though, and my mental health.
I don't talk about depression so much anymore. I still experience it, am still medicated and still speak to someone regularly about it. From a medical and quality of life point of view, I absolutely still experience it. But philosophically, is it still disordered if it's about an extremely real thing? Is it still depression when you are surrounded by proof of your impending mortality? Of the failure of all treatment options to accomplish anything beyond the bare minimum?
I don't know, and if you want to have a conversation about it you can find me at a bar outside the University of Waterloo most Wednesdays 2006-2009, because that's the time in my life for such discussions. Today whether it is or isn't depression doesn't matter (and I really mean that, I'm not looking for validation either), today is one of my extremely finite days, and I should make something of it regardless how I feel (although what is dependent on how pretty strongly).
James Petrosky: I've had some hypomania this treatment cycle. It's weird feeling so motivated to do things, and having the feeling of having energy, only to have it all come crashing down when the reality of a body ravaged by months of chemo becomes unavoidable. I still spent a week not sleeping, with a mind that wouldn't stop (only about 25% thoughts of death, so could be worse). Hypomania is only good in fiction, although it can be briefly enjoyable.
I was fantasizing about going out for bacon and eggs for breakfast until I remembered I can't risk runny eggs for another week into my chemo cycle
Chemo potentially affects all your hair. You don't grasp how much your eyelashes do to keep stuff out of your eyes until they're gone.
James Petrosky: Had to pull off the road today (on the way to my chemo disconnect) because I was tearing up so bad. It happens a couple times a day, normally not when I'm driving, though.
Cycle 10, Day 5
Recovery is noticibly harder this time. It's been getting worse over the last few cycles. I don't know if I'm not eating enough, or of the tight foods, but it's Saturday and I'm still in bed (and I forgot to eat today). It's not nausea, thankfully, it's all lower digestive. Those symptoms were rough last time I did chemo, too.
After dinner, during quieter hours, I'll go grocery shopping. I have to eat candies constantly while wearing my mask or I'll risk gagging the whole time. In a day or two that won't be a problem, but for now it's something I have to deal with. It's weird, but there are only two more cycles to go this round, so I'll make it.
Monday is CT scan day. I'll get the report, which I can't really interpret at all, by the end of the week. I'll speak to the oncologist about it on day 14, as we move into the second last cycle.
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
The take home chemo bottle line has a clamp, which I'm to use to shut off flow if the line becomes disconnected, and a pump that has to be taped against my skin, because temperature controls rate.
Back in the PICC days, holding the pump in place was pretty easy. My forearms aren't particularly sweaty, so the silicone tape the nurses use holds pretty well, and I had my burn mesh securing everything in place. In the sixteen cycles I had with the PICC, I never had problems with the pump.
I have to wear a shirt to protect the port and line from Thomasin, and my torso is naturally pretty sweaty. The tape is constantly coming unstuck. The burn mesh acted as a strain relief, and I have nothing like that now, so on top of less effective tape, everything gets pulled out of place regularly. I should be fixing it every few hours, to ensure I receive all my medicine, but I make do when I wake up, or when I notice a problem.
The port is better in every way, much better for quality of life, but more annoying for actually receiving treatment. Which is pretty silly.
I leave for chemo at 1230 (4.5 hours from now). I have several chores to complete and two meals to eat and all I want to do is kitty cat nap time.
James Petrosky: Anyways, no matter how hard I procrastinate I need to clean the litter box, it's much, much safer for me to do it when my immune system is stronger rather than tomorrow, when I'll be at least lightly immunocompromised.
Cycle 9, Day 8
For a few months now, I've been taking lorazepam daily to help treat insomnia (no idea the cause of it, chemotherapy and several of my side effect drugs can cause it, and while I don't consciously experience the stress of my situation, it is extremely stressful). Last night I thought I was tired enough to go without. I was not. And, at this stage of disease and chemo, no sleep means nothing gets done in a very literal way.
And I have a lot to do. I've been thinking about moving to Elliot Lake (where my parents live, and much nearer my brothers and extended family) for months now, and now I have an apartment and move in date. Tentatively I'll be moving May 1st. This round of treatment is done on April 9th, which should work out fine. So long as I only spend 4 or 5 days every cycle in bed.
This isn't the reason I wanted to move back home (for a very regional definition of home), but I'm still happy to be doing it.
Remember literally ten weeks ago when I asked for questions? (No? Why would you!). Anyways, I finally made my video because I'm finally, hopefully, coming out of this depressive episode
Cycle 7, Day 6
Throughout this course of treatment, I've reliably spent between 5 and 7 days of my two week chemo cycle throwing up. Taking my as needed medicine got this down from many times a day to a couple, and cannibis use eliminated the problem most nights, but the problem remained: I was regularly being sick, and when you're sick, it's really hard to make yourself eat. Which leads to unwanted weight loss, chills and laying around in bed all the time.
At the start of cycle 6, we slightly reduced my dosage of a few chemotherapy drugs (we aren't trying to prep me for surgery anymore, I'm trying to have as much of a life as I can, so it made sense. We also added an expensive (after drug plan it's still 20$ a dose) anti nausea medicine. And it might as well be magic. I haven't even felt mild nausea in two cycles, almost three weeks. I had a lot more nausea in the months leading up to resuming chemotherapy in November. And with no nausea, I have a desire to eat more and better food, and the energy to actually cook. I have more days I can be out of the house. It's fantastic. I'm glad I can afford the drug, because 20$ is buying a whole lot of quality of life for me right now.
James Petrosky: She doesn't look it, but Thomasin was purring through our little photo session. She'd have been happier on my lap, but she's a good sport
Cycle 6, Day 9
This morning I did laundry. My apartment has no facilities, so I have to go to a laundromat. Because of the plethora of airborne diseases that circulate during the Canadian winter, I wait in my car for the cycles to finish. I've put off laundry since I got back from Christmas because it's been too cold on my non-chemo days, and today was the first positive temperature in weeks. It was time. I finished the chore, but the chill put me in bed for the rest of the day. And I'm still tired from it.
On Friday, I have a CT scan. I think everything I'm feeling is a side effect, not a new symptom, but it's impossible to be sure. I don't want to give false impressions, I fully expect this scan to have results incremental with the last. I'm not particularly stressed about it, and if laundry hadn't taken it all out of me I don't think I'd be worried at all. But eventually one of these is going to show something very bad, and that eventuality cannot be forgotten.
My birthday is next week, and that's always been a pretty mixed day for me, this year impossibly so. Right now I'm scheduled to be finishing up a round of chemo on it, making the whole thing moot, but my neutraphil numbers are getting low, and we might delay the next cycle a week because of it. This'll be the last birthday I am certain to be able to do what I want, so I have unbelievably complicated feelings about it all. I'll find out on Friday, also, what's going to happen.
For now, I'm too tired to really let any of this bother me too much, although it does sap my drive to do much of anything.
James Petrosky: 
James Petrosky: Oh! There are twelve cycles in my course of treatment, so we're half way! I didn't think to mention it because I know the CT scan means half way, but that isn't universal information
Cycle 3, Day 14
It's been a while. I've lost all my hair. Visited the chemo suite a few times. And been significantly more active outside of my apartment than I was last year. It hasn't been easy, and it's been slow going, but we're more than half way to my next CT scan, which is still a major treatment milestone for me. Like last year, it's two groups of six cycles and a CT scan to complete this treatment plan.
I started this treatment plan with some digestive symptoms, a lot of nausea and vomiting, and a mild-medium pain in my right kidney. Digestive problems remain pretty constant, but the cause is chemotherapy, not cancer, now. At this point I can tell pretty easily. I still experience a fair amount of nausea, but it's limited to the treatment part of the cycle, a huge quality of life improvement. My kidney is doing better, and no longer causes discomfort, but will require monitoring for the rest of my life (it's part of my standard bloodwork, though). We're back in the swing of things, the rhythm of treatment is normal again, and it feels as good as this sort of thing can.
James Petrosky: 
James Petrosky: It's harder for me to talk about things this time around. It's all so normal now. It's cycle three, but it's also cycle twentyish. I don't have anything new or interesting to say about chemotherapy. And we're not working towards something exciting, we're doing it all because it's part of the assumptions that go into the prognosis calculation. It's how I get my year. Which is hugely meaningful to me, and those around me, but it's not sexy like major surgery. Human beings will adjust to anything.
Cycle 1, Day 1
Here we go again.
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.
On Tuesday afternoon, I make my return to the chemo suite at Royal Victoria Hospital. I haven't been there since the spring. Leaving, I had a very reasonable expectation that I might never have to go back.
But I have to go back.
Last chemo winter, I was so very careful. No theatres or other recreation. Grocery stores during off hours only. No rare meat, raw fish or runny eggs. Last winter, with the promise of surgery, it was easy to hold to these rules. It's going to be much, much harder this time. I need to ask what the risk level is.
I've been busy this past month. A few weeks ago I packed up my work toolboxes and all but officially ended my work life. I'd have gone back had the surgery panned out, but I doubt I'd have lasted very long. My time off had given me needed perspective. Going back in wasn't very hard or emotionally draining because of that. I've managed to get rid of most of my books, I only still have stuff I want to (but am unlikely to) reread. It's only a small box worth, I'm comfortable with that. Also gone are all the non horror VHS tapes. Months and months of trying to do this task have finally allowed me to work through the feelings problem. As a collecter bordering on minor hoarder, it's a good feeling to get stuff out the door without anxiety.
I have a tremendous amount of dread for the coming six months. It's absolutely necessary and it's going to be rough. I don't want to feel sick all the time (even though I already do) and I've grown vain and really, really don't want to lose all my hair. I love the way my hair grew back, it's how I long wanted it to be. I'll spend the winter in a fairly strong physical and social isolation. When terminally ill people talk about whether further treatment is worth it or not, disease state and side effects are part of it, but so is every other aspect of our lives. Right now, even with this dread, further treatment is worth it for me. We all have to know and accept that won't remain true forever.
Today I had a port (port-a-cath or implanted port) implanted under the skin over my collarbone. It will eventually replace my PICC (peripherally inserted central catheter) for my IV chemotherapy treatment, at which point the PICC will be removed from my arm.
Like a PICC, a port is a catheter that feeds to the large veins near the heart. Unlike a PICC, which always has a length of plastic tubing outside of your skin, the port is completely under the skin. In my case, it has a metal disk attached to a plastic catheter. To use it, the skin above the disk is numbed, cleaned and pierced with a special needle, through which my chemotherapy will be delivered into the catheter, and then into my bloodstream. A PICC works similarly, but instead of stabbing, uses valves and connectors.
The insertion was a surprisingly painless affair. I was given some IV painkillers (through the PICC), some stronger local anesthetic, and then felt nothing as the radiologist guided the catheter down my vein and placed the metal under my skin. Like the PICC insertion, I was awake, and like the PICC insertion, I worked myself up way more than was justified or useful about the procedure.
This will be a major quality of life improvement for me. The PICC requires weekly maintenance by a nurse, the port also requires maintenance, but monthly, and only when not in use. The PICC is through the skin, and that entry point must be kept sterile at all times. The port is under the skin, and is as clean as the vessels it feeds into. This means I can submerge my port, which is forbidden with a PICC. Once the PICC is removed in a week or two, I'll be able to shower without spending 5 minutes wrapping my arm in plastic cling film. Come the summer, I'll be able to go swimming. I won't have to worry about getting so sweaty that the PICC dressing falls off (it happened in July). I'll also set off some metal detectors, which probably won't happen but sounds neat. And as far as cyborg implants to, metal deliberately placed under your skin beats plastic tube coming out of your arm any day.
I hope to never need another catheter inserted into my chest cavity. A port can last years. It should serve me for the rest of my treatment. I have a good idea of what using a port looks like in the chemo suite, I've spent enough time there and seen them in use. I'm less sure what it means for my take home bottle, but I'm honestly pretty excited that there's still new things here, even if I'd rather no one ever have to learn them.
James Petrosky: One of the people in the procedure room (probably a nurse) commented that I have very small ears while putting on the oxygen tube. Which is true, and a thing I've heard a lot before, mostly from romantic partners. What I hadn't heard is that I have a small nose. And because I can see my nose and it's always blocking something I want to see, I've always thought the opposite.
Sherri: What do you spend your time while you receive your chemo? Between [all my treatments], waiting my turn when an ER patient comes in, I might be 5-8 hours at the hospital. TV is what I did ( although some days I just rested). I would have brought stuff, but between the walker and a few other things…
James Petrosky: Sherri depending on your chemo, you can be there anywhere between 1-8 hours. I'm only there for 2-3. There are some Facebook groups I only check every couple of days, so I'll just save up stuff to look at. My Switch's battery lasts about 3 hours. I also spend a lot of time people watching. Sherri: James Petrosky - people watching comes naturally to me. For many reasons. Not that I stare or anything, but even to watch interactions- as a teacher and instructor/ lifeguard as well as many other jobs with the public, it comes with the territory.
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.
This set of photos was taken over the past month.
I can't remember if I've said anything about the CT scan I got a few weeks ago, or the blood work I had done before I left for Bancroft, but that has happened, and it's time to see my oncologist. The appointment is tomorrow afternoon.
I don't have a good understanding of how people think I'm doing. I know I've been pretty vocal about how the surgical recovery has been going (very well, overall, but further gains are likely to be small, although its possible I don't yet know my capacity in some regards). But I have been less vocal (I think) about cancer symptoms.
I haven't been able to sleep through a night in weeks. I'll wake up, with my guts feeling like their solid, in the middle of the night. Sometimes water makes me have to use the bathroom with urgency. Sometimes it makes me throw up for a half an hour. Either way, sometimes I can get back to sleep, sometimes I doze until noon.
The list of things my dietician recommended I avoid a month or two ago has become largely mandatory. The small amount of coleslaw you get with fish and chips is usually fine, but salad or a helping of broccoli is a mistake. Fish never seems to be a problem, chicken is fine unless fried, and most red meat should be avoided. These rules must be followed exactly when far from home, or if I want to travel the next day, but can still be relaxed a bit if I'm staying in the Midland area.
The combination of chemotherapy and sleeplessness, at least, have left me extremely forgetful, clumsy and sluggish. I keep losing my keys. I've forgotten how to do basic computer stuff I've known for decades (or have tried to do it the Windows 95 way). I cannot focus on books, even though I got a fun adult book about dinosaurs from the library. My cooking abilities, long atrophied by years of deep depression, can't manage with my boring diet, tiny kitchenette and lack of energy to do dishes or other chores.
There are pains. Pains in places I especially don't want them, places that might indicate tumor growth (but probably not spread). But are they the sort that predate all this? I can't remember. I'll bring them up.
I'm extremely tired. I'm not particularly jazzed about continuing to do this. I've grown more and more convinced that the Bancroft trip is my post surgery peak, and that it's slow decline from here on. Those sort of thoughts are the way of madness, but the nature of the recovery and the disease means there will exist a peak or plateau.
Two weeks ago I was pretty certain I would not be restarting chemotherapy this time. The CT scan report only reinforces this conclusion. But the last few weeks have been rough, and I'm a lot less sure now.
<figcaptionHuntsville sculpture forest
James Petrosky: When I started, I had many reasons to take my selfies, but I was pretty certain they weren't for me. I have no idea if they were then, I don't have access to that brain state. They're absolutely, in part, for me now
James Petrosky: I took a drive, ate a shawarma, almost ate some additional Taco Bell (the line was too long), had a nice drive until I met a raccoon, found a potential corn maze that's very close, and feel a bit better. It's hard to make yourself eat when your stomach is off, even when you know it'll make you feel better. And I need to try harder to get out of the apartment every day, even for a little walk, even if it's hard once the October storms come and it's always so rainy. None of these steps solve anything, but it isn't about solutions, it's a about comfort. For that reason, I'm happy to see my oncologist tomorrow. I get to do a trip to Barrie, I get to talk to people and be around people who, sadly, understand my situation. I get to go for pho after, which is damn near the perfect food for if you're chronically underhydrated like me.
I don't like chemotherapy, but I like trips and cats and people, so if it's time for it, then I look forward to quiet days laying in bed watching old noirs.
I travel a route through central Ontario passing through Coboconk, Fenelon Falls, and Bobcaygeon to arrive at an rock outcrop near Burleigh Falls.
Part 1: Balm Beach
Part 2: Coboconk, Ontario
Part 3: Trent-Severn Waterway Lock #35: Rosedale
Part 4: Kawartha Settlers Village, Bobcaygeon, Ontario
Part 4: Trent-Severn Waterway Lock #28: Burleigh Falls
Its a heat wave! I abandoned the rest of my Balm Beach weekend plans in favour of Meg 2.