Cancer Selfies

The 14 day chemo cycle is the rhythm of my life

Cycle 9, Day 14

Tomorrow is chemo day. There's been so many of them now that I don't feel anxiety about it anymore. It's just part of the rhythm of life. The main pulse in the rhythm of my life now, even. I'm not looking forward to it, I never do, but I'll take my medicine without further complaint, and make myself a little nest in my bed and sleep the rest of the week away, with the company of Thomasin and some VOD curling matches I found earlier this week.

From the comments

James Petrosky: On Sunday I found the VODs and managed to catch Curling BC's women's final, I watched it the same time as I watched a stream where someone went through and explained the Roland 606 drum machine circuit for the kick drum. It was the perfect combo for me.

A video call with Mt. Sinai

Cycle 9, Day 4

I had an appointment with the surgical oncology team at Mt Sinai this morning and the news is good: they agree that the CT scan results were positive and that we're still on track for the HIPEC surgical option.

I'm on cycle 9, and have three more cycles to go until another CT scan. If the surgical team likes my progress, I'll remain on chemotherapy for as many cycles as it takes to be scheduled for laparoscopic surgery, a major stepping stone on the way to the HIPEC surgery I hope for.

Right now my two biggest fears are that either I fall ill in my immunocompromised state, and miss treatments and get scheduling all screwed up (I've worries about my health more intrinsically, too, but they're not relevant here) and that the ongoing pandemic floods hospitals with patients, and elective surgeries like mine are cancled again. I don't even go through drive through's without an N95 mask on, so at least I'm doing my best to control what little I can.

From the comments

James Petrosky: I included some less positive stuff out of a need to tell a complete story, but this is genuinely good news. The surgical team is a lot more experienced at looking at the specific sort of cancer I have. The medical oncology team at the Royal Victoria Regional Health Centre is extremely skilled, but the way Ontario organizes cancer treatment means that the central institutions have the expertise. So it's confirmation of a thing that was itself confirmation of how I'm feeling, but also tremendously exciting and good news.

Just six to eight more weeks until the next update, which is hopefully more of the same.

James Petrosky: To rain down a bit again, nothing is guaranteed. I'm a good candidate for HIPEC, but that doesn't make it a sure thing. And the surgery itself isn't necessarily curative, and in the vast majority of cases gives the recipient extra time.

I'm choosing to focus on that small curative chance, but I never let myself forget that it's all up to the fates. It's the only way to stay emotionally level.

A lot to reflect on this year, a lot to hope for next year

Cycle 8, Day 11

Back in August, after I'd been diagnosed but before I'd started treatment, I genuinely didn't know if I'd see the new year. Now, as December draws to a close, I feel as good as I have for the whole of 2022. It's been a rough year, but I'm forgetting all that. 2023 has a lot for me to look forward to, and that is what I'm focusing on.

From the comments

James Petrosky: I put a lot of effort into painting that didn't come through as well

James Petrosky: My resolutions: to keep on as best I can and to spend time with the people and animals who are important to me. This includes everyone reading this, digitally.

A day late but safe

Cycle 8 Day 6

I'm happy to report I can still physically cope with long trips. The weather was pretty rough for the first leg, but it wasn't too physically or mentally taxing and I was able to finally make the trip home.

The winter storms and chemo are conspiring

Cycle 8 Day 1

This is the most I'll I've felt in a number of cycles. Hopefully it's nothing rest won't solve, the reschedule really threw me off. I needed extra nausea medication at the chemo suite, which is a new one for me.

I'll have my take home baby bottle until Friday morning, which forces my Decemberween travel date to Saturday. Saturday, we are expecting a major winter storm. Here's hoping that the luck I'm not feeling with the chemo holds on the weather, but I'm not holding my breath.

A good week

Cycle 7 Day 8

Its been a happily quiet few days, since I got to return back to my apartment. But that cannot last. There's a winter storm expected tomorrow, which doesn't impact someone who stays home a whole lot, but Friday I have an intake appointment with a palliative care doctor that I don't want to miss or have to reschedule. And then four appointments next week (pre-chemo oncologist appointment, symptom management, chemo, chemo disconnect), which is a lot of hospital trips. Being terminally ill is practically a full time job.

This once again sounds more defeatist and depressing than I mean it to. I'm living my best life, doing hobbies, playing games, taking outings to enjoy seasonal lighting, spending quality time with my cat. Decades of mental illness, and coping with mental illness, have given me a good base for coping with the situation.

From the comments

James Petrosky: Just some happy things:

Don't listen to podcasts about death and dying in the hospital

Cycle 7, Day 1

Today was the day I finally saw someone around my age in one of the chemo chairs. He was accompanied by another young man, around the same age. A brother? Friend? Lover? I'll never know. I hope they do well, but I know from experience that doing well is relative. It made me sad, but affected me a lot less than I thought it would.

By chance, I listened to a podcast episode about the science of death and dying while I was at the cancer centre. Friends, don't listen to podcasts about death and dying while in a hospital. It's not great for your anxiety levels, especially when you've got other anxiety inducing stuff going on, and especially especially when you're walking into a housing nightmare when you get home.

Speaking of housing nightmare, I'm spending my chemo recovery period in my partner's spare room. Thomasin is being introduced to her cat, and it's all just a stressful mess. Not at all what you need when you're recovering from, and receiving, chemotherapy.

From the comments

James Petrosky: She's come out or hiding ❤️

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.

At the risk of oversharing

Cycle 6, Day 10

The bone pain was excruciating, second worst continuous pain I've ever felt in my life, but fortunately only lasted two days. And I was able to be active, it really only hurt when I tried to rest. I did all my Decemberween projects during the worst of it. Don't recommend, but I know what to expect next time, so I'm not afraid or anxious about facing it again.

I'm pretty open about almost everything I'm going through. For reasons I cannot explain, sharing extremely private information about my diagnosis, prognosis, etc., is second nature to me. It would feel strange for me not to share. But the fact that I'm stuck inside my apartment several days a week because of diharea (colloquially, although much of the time medically) seems to embarrassing or crass to share. But I'm feeling spicy today, so here's the facts: bowl cancer, chemotherapy, and more than a few of the other medications I'm on really screw things up, I keep immodium on my person at all times (and have since the spring). I've made it work, but I've missed out on a lot of stuff I've wanted to do (nothing planned, but nice days for walls and such).

Humans will adjust to damn near anything.

From the comments

James Petrosky: In case you're wondering: it's as delightfully soft and squishy as it looks. 10/10 strong recommend

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.

The neutrophil shot

Cycle 6, Day 4

Cycle six! That means, according to the very flexible plan that exists right now, I'm half done chemotherapy for this batch. There could be more right away, there could (hopefully) be surgery, there could be a break from all treatment. But whatever it is, whatever comes next, this is a milestone.

The neutrophil boosting shot was much, much less terrifying and unpleasant than I feared it would be. I think by the third one I might be able to administer it myself. So far I've only felt a touch of drowsiness for side effects, but I expect to wake up tomorrow in a fairly unpleasant state. Still, better than getting sick from otherwise harmless bacteria that live on all our skin.

Chemo was harder this time than last time, but still much, much easier than those first few. Thomasin stayed with me most the whole time, and we enjoyed some old noirs together. It wasn't the easiest week, mental health wise, but I'm still in a good position to stay the course, which is the important thing.

From the comments

James Petrosky: I'm not that red, my monitor was magenta when I took this photo and I didnt notice until just now

Sixth time to the chemo centre

Cycle 6 Day 1

In September, this was the end point. Theoretically. I was pretty sure we were going to twelve from the start, but I'm still going to celebrate this milestone.

Also, the immune boosting drug costs 1700CAD for enough to cover a full course of chemo for me (six dosages). I have no idea how much it actually costs to produce, so I have no idea if that's fair. What I know isn't fair is that people under 65 are expected to have that money (or a drug plan) or just delay their lifesaving treatment. Either way, I got lucky, I have my dose, I'm set, all I have to deal with is a needle in the belly. Which honestly sounds like a nightmare.

From the comments

James Petrosky: Me posing with my "baby bottle" take home chemotherapy. It's the bad one, the one that makes me most sick, the one that makes my mouth taste slightly terrible as long as I have it. But it gives me more good days to spend with the people that matter, doing the things I love, and petting the softest/biteiest cat I know, so it's worth it.

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.

A trip to the zoo

Cycle 5 Day 11

I visited the Toronto zoo with my partner today ❤️ It was a good day, but I learned how much by ability to produce and retain body heat has been affected.

From the comments

Some additional photos (without me in them)

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.

Support groups

Cycle 5, Day 7

I haven't felt as good as I have this week in a long time. Having energy is nice, and not as common as it used to be, but what's usually missing is the focus to be able to do anything, and the ability to take joy from activities.

With the help of the cancer centre social worker, I've got what I need to join support groups by and for cancer patients. I've even got a good lead on some groups that are all young people (I'm still a young person in cancer circles, apparently), which I'm really hoping can help with the social isolation that my immune system and the coming winter force on me.

Easiest chemo yet

Cycle 5, Day 1

This was the easiest visit to the chemo suite yet. Even though I had a stronger negative reaction to the chemotherapy this time than any of the other cycles. And, upon returning home, I didn't immediately crash. Don't get me wrong, I still feel like trash and wouldn't ever want this in any other situation, but it's nice to have not lost a full day this time.

A thirteen day cycle

Cycle 4 Day 13

This is the last day of this cycle. I had my chemo day moved forward to Wednesdays so I only have to travel ten minutes to get disconnected instead of forty (or wait for an hour in an increasingly Covid-19 filled emergency room).

It's frustrating, but also obvious, that other health problems don't take a break just because you're getting treated for cancer. My mental health has been full of ups and downs this cycle - mostly ups, which you're forgiven if you think is better or easier. It's not, hypomania is truly unpleasant. My sleep has been erratic, and I need much more and more constant sleep now than I have in decades. And my appetite has been strong, which isn't all bad, weight loss is a common symptom of both colon cancer and chemotherapy, but one of the drugs in my chemotherapy really messes up my digestion and makes it much, much easier to overeat at a time when I'm prone to overeating or eating too quickly. It's all manageable, but instead of how good I was feeling back in cycles 2 and 3, I'm now constantly in some discomfort, physically and mentally.

This, too, is why I've been taking no pictures and sharing no posts. My brain is too flighty and unfocused. But it's nothing to be too concerned about. It's normal for me to have these episodes, even though I'm properly medicated. It will end soon, and I'll be back to my new, profoundly strange, normal.

From the comments

Ron: Any concern the altered digestion will affect medication uptake?

James Petrosky: I take my chemotherapy intravenously, so at the very least the most important medications will be unaffected. It might slow the uptake of lithium a bit, but since it takes a few weeks to get to a theraputic level in your blood, I don't think its something to worry about. The thing I'm more worried about is that one of the drugs I take for chemotherapy side effects can trigger manic episodes in bipolar people.

James Petrosky: But its a good question to add to my list next time I see my oncologist

Ron: I hope those potential side effects don't appear or are at least mild.

Wigs and synthesizers

Cycle 4 Day 6

This cycle has been a lot easier on major side effects, but frustrating on the minor ones. I've felt at best okay, which all weekend was fantastic, but I never started feeling better coming out of it. I'm tired, often have a headache, and can't get the aftertaste one of the chemo drugs leaves me with out of my mouth. Still, I try and make the most of it. I've been working on building an analogue synthesizer all summer, and I'm on track to finish it this week. I got some discount costume wigs, and the next project is to do some work on them (which I'm really excited for). The cooler weather has really put Thomasin's cuddle instinct into overdrive, which is fantastic except when the soldering iron is on, which is a delight and highlight of every day.

From the comments

James Petrosky: The album was only going to get one from a shoot, but I also really like this one

Claire: Ok so I definitely thought the wigs were filters 😂

James Petrosky: They're all real objects which I own and hope to have the guts to wear outside

The normal and the surreal

Cycle 4 Day 1

Another day, another visit to the chemo suite. It's astounding the things that can become routine. I've got the prep down, I know exactly when to leave home so I spend almost no time in the waiting room (the last two times they were looking for me within minutes of check in). I know when to ask for the injection for the hot flash side effects. I can time my second washroom trip so that I'm not connected to IVs and can walk feely and unencumbered. I know exactly how to set up my apartment for maximum comfort for both me and Thomasin. It's all routine. It's all normal. It's very surreal.

From the comments

James Petrosky: My moods have been a mess the past week or so, this was emotionally the hardest visit since the first. This is my life now, and it's really hard to accept.

Philip: It's really strange how people can adapt to these things. How long does your regimen usually take? Do you try to doze or do you have some activity to distract yourself?

James Petrosky: Its been pretty consistantly 2.5 hours from entering to leaving the hospital. I bring my phone and Switch to occupy myself, I haven't dozed yet because its an hour drive home and I want to be alert, and because I spend the next two days dozing. Lots of the other patients sleep, though, I assume their drug cocktails have stronger side effects.

James Petrosky: Nurse Thomasin reporting for duty (she's very, very content right now ❤️)