Vomiting need so great even Gravol is useless against it.
It's dimenhydrate. I think everywhere else calls it something else, and normally I'd look it up, but even mild salsa is awful to throw up so you're just going to have to check for yourself (Dramamine in the States at least)
Screw international travel, a new car and whatever else I used to think* the purpose of affluence was, the new unattainable dream is a house with a seperate bathroom for throwing up and for regular use. Preferably next to each other.
*brain too mush to remember what I used to dream about, but it wasn't that horseshit. It sounds okay, though.
James Petrosky: This might not work because that's twice the bathrooms to clean, but I'd like to try.
I'd also like Thomasin not to be in the room when I throw up, because I usually can't close the door in time, but cat logic demands she join me.
A frustrating symptom I have is being constantly dehydrated enough that my digestive system causes me a lot of grief, but also feeling sick whenever I drink enough water to do anything about the situation. This morning I got a decent amount of IV fluids, and I felt mostly normal for once.
James Petrosky: Soft drinks are better on the stomach, but help the dehydration less.
Some chemo patients get IV fluids as part of their recovery. It would trap me in my apartment for more days per cycle, but I'm still going to ask about it.
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.
Facebook is once again trying to turn a photo of one of the worst days of my life into a meme with shitty dance music
For the first time in 2.5 weeks, I didn't spend an hour throwing up in the middle of the night AND managed to sleep through the night.
No idea why. Hope it wasn't Covid-19 vaccine side effects.
My life would be a lot easier and better if, when I searched for a health related subject, the search engine only looked at the sites of large, reputable hospitals and government health organizations.
James Petrosky: I don't want your natural, I don't want your home remidy, I especially don't want your spirituality. I just want to know a handful of possible reasons why my mouth has tasted bitter for weeks.
Holy shit national grocery store pharmacy has both vaccines.
Holy shit maybe I can sleep through the night because of it.
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've lost my car keys again. Third time since Labour Day. I never used to lose my keys, but I have a real hard time with this sort of thing these days. But how to navigate Timmins, Ontario, a city I haven't really visited since 2004? No fucking problem.
James Petrosky: Yes I have a place I always put them. I was extremely surprised to not find them there. But things can get confusing when bringing in groceries, hands are full when I pass by the spot, and between putting away yoghourt and egg nog (it's been available since September 27th) and keeping Thomasin from escaping, I have lost all memory of everything.
Yes, Timmins isn't a terrifically complex place to navigate. And probably looks little like when I was last there. But it's still the kind of thing I remain capable of remembering
I have learned a gross thing that is my responsibility to make sure as many of you know as I can.
If your stool is thin and ribben-like, you should talk to your doctor about it.
There's a small chance this information could have changed my disease progression, because I'm fairly sure it appeared before the pain. But I talk about pain without hesitation on social media, and after a year of constant diahrea I still find the subject unpleasant to talk about, so I never wrote anything down about it, and I can never know the chronology.
James Petrosky: When I read ribben like, I knew exactly what it meant, there was no doubt. So if you aren't thinking "oh yeah that's what that looks like" right now, you can let the anxiety go for now.
This year I'm celebrating Thanksgiving with lots of yoghurt and hummus (not at the same time) because my filling lasted a week and now that tooth has got to come out.
By the end of March 2020, it was obvious that Thanksgiving was lost. The scientists were working hard, but clinical trials and logistics just take time. 2021 was quiet and careful. 2022 was in a cabin in Wasaga Beach. 2023 is delayed, because Covid-19 never left us. I don't know if there will be a 2024.
I have a firm no regrets policy (for that is the path of madness), but I wish I'd known that 2019 would be the last normal Thanksgiving of my life.
Even if I doubt I'd change much.
The following was originally posted October 5th, 2020
We're closing in on Thanksgiving, easily my favourite holiday, and even knowing that it's essentially been cancled since March hasn't helped me cope.
James Petrosky: This is sad, have a cat
James Petrosky: I'm going to say something that sounds contradictory but isn't.
I'm doing okay, I am as joyful as I seem, I spend my time listening to science communication and get to think about dinosaurs a lot.
The knowledge that every marker - every holiday, anniversary, astronomical event, that passes could easily be my last is a profound weight that no one else can bear for me.
The geese are leaving me, but there'll always be someone to welcome them back.
So it's not Covid-19, at least
James Petrosky: Still tired with a messed up digestive situation. But I guess the cause of that was always a bit obvious
Trying to pick apart symptom causes is hard. Yeah, the cancer is obviously leaving me a specific sort of tired all the time, and limits my endurance on activities. It also does wild and continuously changing things to my digestive system. I'm taking a break from cannibis, in part so that there are fewer potential complications at the dentist Monday, but also because its periodically a good idea. That obviously causes changes in apitite and sleep, too.
But all that doesn't seem enough to explain how tired I am right now, at least I hope it doesn't, since I've slept for most of two days (one after an outing is normal, not two). I know I'm not drinking enough water, my tap water has always been awful and, because of the tooth, I'm trying to cut back on pop and juice. And it feels like food is sitting in my belly, not doing anything, which is absolutely a chemo side effect but not one I'm terribly familiar with outside of that.
Anyways I'm going to see if I can get my hands on a Covid-19 rapid test tomorrow. Exhaustion and digestive problems are 100% explained by the cancer, but still something feels off.
If I do have it, I was either exposed on Tuesday at the gallery or Sunday in Huntsville, either way useless for the contact tracing we're not doing. And that puts me on day 2 or 4 and I'm just as tired as I was after September 10th when I did my Burleigh Falls outcrop trip. So if it's positive, it's very mild.
James Petrosky: There are no respiratory symptoms at all, so I didn't even consider it. I spent most of the summer lying down and resting, spending two days doing that after a night of insomnia doesn't even feel worth mentioning.
I had attributed the insomnia to the cannibis, normally I have some before bed to help me sleep, and insomnia is a discontinuation symptom in some people. But covid also matches it. Too many variables, no where near enough data.
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.
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
This is one of my absolute favourite photos from my cancer eon.
Photo from 2022-09-26: Things are already going better after one cycle
James Petrosky:"But James, shouldn't that be era?" Look, it's not anyone's fault that we don't teach the subdivisions of geological time in school (also, I don't think we should, time would be much better spent on astronomy or evolution).
An eon is the largest division of time, the precambrian is takes up three of four eons. In analogy, moving out after high school might be the sort of thing worthy of changing an eon. For me, cancer is an eon.
An era is a subdivision of an eon. The mezosoic is an era. All dinosaurs evolved, lived and died (except birds) in the mezosoic. I have chemotherapy, surgery and post surgery eras.
To torture the metaphor, eras are made of periods. Jurassic, ordovician, paleogene. I did three courses of chemotherapy (broken up by CT scans), each course is a period.
Periods are broken into epochs. If you hear a geologist say "upper triassic", that's an epoch. A 14 day cycle of chemotherapy would be an epoch.
Finally, we have ages. The smallest geological unit. The metaphor is stretched to uselessness, but the comparison is a day.
Recorded from inside Atmo-Sphere, a sphere of gneiss by John McKinnon, located inside the Sculpture Forest.
I have a CT scan in an hour.
I've had anxiety about CT scans before. But treatment reduced or eliminated symptoms, so in my memory I wasn't too worried.
I have no confidence about this one. Symptoms are tolerable, but measurably worse. And the source of the agonizing pain, the primary symptom that told me something was wrong, has been eliminated perminantly twice over.
I'm in the dark. I don't talk to my oncologist until after Thanksgiving.
I'm tired. I don't want to be a professional cancer patient anymore. I just want this to be over.
But that's not available to me.
James Petrosky: Thanksgiving is October 9fh. I see my oncologist on the 11th.
James Petrosky: It went fine. My physical reaction to the machine and the contrast was the same as always. I think my anxiety spike is getting worse each time, but I don't really remember the scan I had in the spring very well now, and my anxiety has been much worse post surgery.