Cancer Selfies

Video: November 13th, 2023

After a month.5 break, I'm back to doing video blogs! There's no information in this one that I haven't talked about over here on Facevook, but it does have my voice and I cuss a bit, so it's not without its charms.

The Return to the Chemo Suite

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.

Arby's Disapoints, but You've Still Gotta Try

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.

You can feel the Port-a-Cath through the skin

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.

My face through the decades

2006, 2020, 2023: no matter the year, I'm going to have silly hair

Cannibis for nausea

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.

From the comments

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.

Perchloroperazine

Learned two things when trying to solve my nausea problem.

1. 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.

2. Every other claimed health benefit of cannibis might be nonsense, but it really does work for nausea.

From the comments

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.

The Port-a-Cath is in

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)

Gravol is powerless

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)

A house with two bathrooms

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.

From the comments

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.

No level of hydration seems to help

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.

From the comments

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.

Port-a-Cath day

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.

From the comments

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.

Cause for celebration?

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

Sleep, hopefully not a side effect of the shot

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.

Fake medicine is ruining the intnernet

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.

From the comments

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.

I got both shots!

Holy shit national grocery store pharmacy has both vaccines.

Holy shit maybe I can sleep through the night because of it.

Returning to the Chemo Suite

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.

Trips & Treatment

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

From the comments

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.

Lost my keys again

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.

From the comments

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

Ribben like stool

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.

From the comments

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.