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
James Petrosky:Don't promise paradise and fail to deliver the stegasaurus
Gang, for the first time since the PICC was installed on September 14, 2022, I was able to have a proper shower without plastic wrapping my arm.
It was very nice.
Wanna see the line they put in my neck?
Gena Radcliffe: I have to admit that when I had the dialysis port in my chest I was fascinated by it.
James Petrosky: Gena Radcliffe they're so cool, all the benefits of my old PICC with many fewer of the cat risks
Home IV selfies!
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!! ❤️
Gillian Bradford: That beard is impressive.
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.
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.
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.
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.
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.
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.
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.
I reflected on this on October 26, 2024
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.
Exciting news! The port they inserted under my skin is about the size of a toonie (3cm diameter, just over 1 inch) and can easily be felt from the skin's surface.
Honestly the part I have a harder time with is the fact that the line coming out of it can also be felt over a length of around 5cm.
2006, 2020, 2023: no matter the year, I'm going to have silly hair
The problem with finding your nausea solution in a legally intoxicating substance is that if you've got to run errands, you have to feel full sick the whole time, and you better be damn sure you don't need anything when you start treatment.
James Petrosky: Not looking for medical advice. I see my oncologist soon, my usual anti nausea (perchloroperazine) should work for how I'm feeling. I tried to get some earlier, but was told I have to wait. The cancer centre can do a lot for you while you're receiving treatment, but is apparently less willing between treatments.
I'm not in the habit of getting the same drugs, or similar types of drugs, from multiple doctors at once. I'm bipolar and simply cannot be trusted with that. If it was September and I had months of waiting to see my oncologist, I would talk to my nurse practitioner, but with two weeks I will not.
Learned two things when trying to solve my nausea problem.
Perchloroperazine, the main nausea medicine they give me for chemotherapy induced nausea, has two other common uses. The first is as an anti anxiety medication, the second as an antipsychotic used to treat bipolar patients. I was at therapeutic doses for both.
Every other claimed health benefit of cannibis might be nonsense, but it really does work for nausea.
James Petrosky: I should say, my dose was equivalent to the therapeutic dose over the days I took it, which is 3-5 days. Not properly therapeutic. I can't even say for certain it leveled me out, but it feels like it had an affect.
I've got two 50mm (roughly 2in) square bandages on my chest and neck. They itch so bad. (and when I touch them I can feel the thing they put under my skin and it's weirrrrd)
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
