Cancer Selfies

Chemo remains difficult, even with magic medicine

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.

From the comments

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

Chemotherapy and birthdays

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.

From the comments

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

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.

Pre-paliative CT scan #2

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.

From the comments

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.

CT results

Cycle 6 Day 12

The CT scan results were good. Most importantly, to me, there were no new growths visible on it. And existing growths have all reduced in size compared to August. Bonus good news! There were anomalies on my lungs back in August. They remain and are unchanged, so they're source is likely not this cancer. Extra bonus good news - the immune shot worked, my numbers are as good as they've been since I started chemo, and I won't need one this week (so I won't have bone pain next week).

This all matches how I've been feeling, so the super extra added bonus is that I can trust how my body's feeling again. Which may be normal for many, but I spent at least nine months where I was increasingly unable to. It's a nice thing to have to get used to again.

End of course one CT scan

Cycle 6, Day 6

Today I visited the Midland hospital for a CT scan. Next week I should hear back about the results. This is how we're going to learn how well the treatment has been working.

I'm excited, and cautiously optimistic, for the results. I need to remind myself that I'm on a palliative chemotherapy cocktail. That the goal is quality of life, not to rid me of the cancer. The best case scenario, the scenario I hope for, is that existing tumors have shrunk and that no further spreading has occurred. None of that is guaranteed, but I feel good, physically and mentally, and I'm allowing myself the risk of disappointment on this.

I have an appointment with the surgical oncologists at Mt. Sinai in early January, they are much more experienced at interpreting this sort of scan than the medical oncology team in Barrie is, so even though I'll learn a lot next week, I'll still have to wait another month before I'll learn a fuller story.

My immune numbers crashed

I reflected on this on November 21, 2023

Cycle 5 Day 13

Today I found out that my immune numbers had finally fallen past the point where something has to be done. I had the option to delay my treatment a week and allow it to recover, or start another drug that's designed to do the same.

I chose the drug. There are too many appointments, especially my CT scan Monday, that would be either too much effort to reschedule, or would not be able to be scheduled soon enough. I'm extremely unenthusiastic about a needle in the belly, but it's better than getting sick from the bacteria that naturally live on me all the time.

The drug is also the first time I'm going to have to pay for my treatment. Were I 65, OHIP would completely cover it. Because the whole system is designed for a specific sort of person getting treatment for cancer. My work plan covers it, so no one needs to worry about me in this regard, and without the CT scan so close I might have opted to wait an extra week, just to see what it would be like.

From the comments

James Petrosky: I've already been only visiting stores during off hours and have next to no in person social contact. I've been essentially acting like I was in this situation since September. The Covid-19, influenza and assorted childhood disease situation locally is more than a bit alarming, but I'm doing what I can to keep myself safe and there is no need for any worry on my behalf.

James Petrosky: Oh! Also, side effect of new drug is bone pain. Which is the least pleasant sounding combination of two words I've heard in a very long time.

Mica: I love when healthcare systems say you're too young to have the disease you have. 🙄 Like, thanks I'm cured

James Petrosky: A side effect of electing mostly old politicians I guess. More seriously, the whole system kind of assumes an older patient. And all I've seen are older.

Sometime, my last best day will come

Cycle 5, Day 9

For weeks now I've been plagued by a thought. A worry. A concern. I feel pretty good most days now, as good as I have since Cats was in theatres, but I know that won't last long term. I know that some day is going to be the best day I have left, and after that all that remains is a slow decline.

In just under two weeks, I have a CT scan to see how I've responded to my first round of chemotherapy. In about two weeks, I expect the results will be available. And in just under three weeks, I expect to have them explained to me, in great detail, by my oncologist.

I feel fantastic, and I expect a good result, but cancer is a tricky foe and mine is a fairly rare and poorly understood. So I worry about the short term. And I worry about the long term. The first should be fine, but the second is a certainty (ignoring the surgical option, which itself isn't a sure thing and is dependent on the short term results and I don't think about often because it is itself a whole new assemblage of horrors).

I'm fine. Honestly, I'm thriving. I've never been so on top of my hobbies, in control of my day to day life. It's not a feeling I'm used to. But I know it's temporary, both because treatment must progress because we are working towards the surgical option, and because even with the best treatment available, my care is still palliative. I'm under seige, and there may be no help forthcoming. We hold out as long as we can, but one side will break.

Photo from 15 minutes before sunset at Woodland Beach.

From the comments

James Petrosky: This is significantly more bleak than I meant it to be. I'm not changing a word, but know that my mental health hasn't been this resilient since 2010. My medication is the right one, my levels are good, I've done my time in therapy and have a good team in place now. I'm not suffering, nor am I avoiding my problems by overworking. Things are going well. But there's simply no way for me not to be constantly cognisant of my own mortality at all times. And it's been this way for months. Given the situation, it's fine, I have a good team supporting me, after all. But it is a lot.

Phone Anxiety

Fun fact! Phone anxiety only gets worse when it's literally a matter of life and death

From the comments

James Petrosky: Okay I whine but I think it's all done. Turns out the trick is to short circuit my worry circuits with the care circuits by putting "order flee medication for Thomasin" last because I will always put off stuff for me but cats are much too important
James Petrosky: To anyone worrying, it's important but not iminant. I need to get some CT scan results to someone at another hospital, but apparently the best/only way to so that is a USB drive.

James Petrosky: It's not like I'm not calling an ambulance because I'm too nervous, is what I mean.
Stefanie: James Petrosky really in this day and age they can’t send the files over in a better more accessible way? That’s really unfortunate
James Petrosky: Stefanie patient confidentiality is the killer, I think
Stefanie: James Petrosky it makes sense but it’s unfortunate given you probably can’t like mail it
James Petrosky: Stefanie I think it's a USB drive, so I might be able to mail it. Once I have it I'm calling and asking how they want it sent
James Petrosky: It's a CD/DVD. What is this, 2005?
I can't even look at the files 😆
Stefanie: James Petrosky damn that’s really old school (says the nurse who was still sending out patients with CDs last year 😆) yeah you probably can’t because of software needs and they put some super security measures on them for confidentiality
James Petrosky: Stefanie no I can't because I haven't owned a CD drive in almost a decade

There are a lot of tests

This was written on September 4th, 2022

A lot of new tests had been scheduled, I knew I was driving five hours to Elliott Lake the next day and was dreading it. I'd been planning this visit for months (it got changed up a bit because I got Covid-19, and then again the day before, because I no longer had the energy for big trips and now needed to be nearer an emergency room I didn't think Chapleau could provide)