Cancer Selfies

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

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.

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.

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 ❤️)

Good days pay for the chemo days

Cycle 3 Day 10

We're getting what's likely to be a final reprieve before the winter descends upon us, and I intend to take best advantage of it.

Back at the start of this, I said the currency you spend is the feeling of normal. We left normal behind months ago. The new currency is the little experiences I can jam into my good days. Seeing a raccoon, petting a dog, talking to someone I haven't seen in a while (or have, and want to talk to again), interacting with all of you. Little things. And I need to save up enough so I can pay the toll and make it through The Chemo Days.

Avastin, side effects and mortality

Cycle 3, Day 7

Its been a suboptimal couple of days. The new chemotherapy drug, Avastin, has new and exciting side effects that I was simply unprepared for. Avastin's purpose is to starve tumors of blood vessels, so it's a very important part of my treatment, but in doing that (I think) it's been giving me neck stress headaches. Yesterday, I made a delicious chilli, and ate too much of it. A mistake I hope to never make again, because the side effects have been making me suffer all day. I haven't been able to keep down over the counter medicines to help with any of the symptoms (I've called the hotline, I'm not in danger). I see a doctor for symptom management next week, as well as my oncologist, so these problems will be addressed soon.

To compound my difficulties, I've had two long phone calls - one, yesterday, with the cancer centre's social worker and mental health generalist, and while its fantastic to know (and like) my mental health professionals, my personal, pre cancer, history is heavy enough, and discussing how its evolved since August was draining before the side effects got mixed in. Today I spoke with a home care coordinator, mostly as an intake appointment, but we touched on the evolving nature of my needs. Friends, if this has been too much, duck out now. It's fine, I love and care about you all, I need to share this but you don't need to see it.

Right now, my needs are very basic. I need PICC maintenance once a week. We touched on how pain management tends to go, and the role home care nurses play as people move from lighter opiates, to more serious ones, to long acting ones to pumps, and how keeping good records on use makes it easier to justify stronger medications when the time comes. We talked how more time in bed can lead to bed sores, the early warning signs and the waitlists for PSWs and physical therapists. We talked end of life, mainly the where of it. Not because it's imminant, but because I have all my mental faculties now and need to be thinking about these things.

It's been an exhausting few days. And side effects have stolen some of my precious good days. But we soldier on. The chili was perfect, I've learned that I should be grazing rather than taking large meals, Thomasin has been paying her rent with wonderful cuddles, the birds and squirrels have been a source of delight all day. It's been a tough few days, but I've had much, much worse, and the next few days are hopefully looking up.

From the comments

James Petrosky: I wouldn't have written the hidden paragraph if I wasn't comfortable talking about it, but please either nest your comments carefully or message me directly. I'll get to you all as I have the energy.

James Petrosky: If you were close to me during any of the times my depression and later bipolar disorder flared up, you know I have no problem discussing difficult health issues. I have similar intentions here, serious health problems affect us all and need to be better normalized. I find Dave Warnock, a long time atheist/secularist activist who was diagnosed with ALS a few years ago, and has been very public about how that's affected his life, from diagnosis to end, to be inspiring and more than a little bit of an inspiration for these posts. His Dying Out Loud was important to me before all of this happened, and has taken a new importance since.

I have not accepted end yet. I'm very hopeful about surgery, and feel like I'm due for a win when it comes to the outcome of that surgery. But it's been an emotional couple of months, and the hardest week since I started chemo, and friends, I have no intention of hiding this messy stuff for you.

Scarves are way more useful now

Cycle 2 Day 11

Last week I noticed that my hair was thinning noticeably. Today I noticed that my facial hair is following the same pattern. But I was able to be the most physically active I've been in nearly a year today. I was limited by dinner time, not nap time, for the first time since at least the spring. The side effects are difficult, and even though it can never be a cure, the treatment works, and it's worth all the hair loss.

From the comments

James Petrosky: The cattail, in its fluffy magnificence

Sweater weather forever

Cycle 2 Day 10

Its Thanksgiving weekend in Canada, and we're having our turkey dinner tonight. We rarely have it on Monday, the day Thanksgiving actually falls, because you have more non work days to eat delicious leftovers. This time, it's not work, but the start of Cycle 3 on Thursday, that motivates celebrating early.

To my Canadian friends, I hope you have the Thanksgiving you dream of.

To my non Canadian friends, have a wonderful weekend.

From the comments

James Petrosky: Another of the poodles on their own

James Petrosky: The menacing October sky of Lake Huron

James Petrosky: Thanksgiving dinner round these parts (this little cottage, specifically, and not necessarily anywhere else) is a roasted turkey served with fresh (never canned, canned was served at a family gathering once years ago and that faux pas is still talked about), mashed potatos, dressing (no stuffing is served), gravy, boiled turnip and steamed green beans. Peas often replace the beans, but we found some fresh ones this week.

Unfortunately neither of my brothers, nor my partner, could make it. But we do the best with who we have (namely, my parents and the poodles)

James Petrosky: In case you were wondering what we watch on tv during and after dinner, is the United States National Park Service Alaskan bear cam and a collection of webcams in Siberia.

James Petrosky: Sunset at Woodland Beach

Cycle two

Cycle 2, Day 1

It was so much easier this time.

Cancer can spoil art for you

Cycle 1 Day 13

A short and not comprehensive list of songs I've had to remove from my playlists since being diagnosed with cancer:

• Kettering by The Antlers
• Easy/Lucky/Fred by Bright Eyes

There are certainly others, but these found themselves removed today.

I want to reiterate how wonderful you've all been, how much your kind words and Facevook reactions mean to me. You all mean so much to me, thank you all so much for existing ❤️

From the comments

Mica: Have you seen the anime short of the little girl who gets turned into a gengar? So cute

I learned to paint my nails

Cycle 1, Day 8

This cycle is now more than half over. I'm looking forward to my next visit to the chemo lounge with some trepidation, knowing now what it's going to bring, but also with the knowledge that I do physically feel a lot more well with treatment than without. My quality of life has not been better in months.

However, I have to visit the hospital Tuesday, Wednesday, Thursday and Saturday for consultations, bloodwork, treatment, and other care. Being sick is exhausting, but beautiful fall days (that I forgot to document) like today make the whole mess so very worth it

From the comments

James Petrosky: Also I think I have a problem

James Petrosky: I'm not great yet, but I have lots of time to practice

Silly selfies

Cycle 1, Day 8

I barely got out of bed today, after my little scare this morning. I'd have been fine if I could have had a Tylenol, but I'm not allowed to pharmacologically lower a fever, so I couldn't address my headache, either. Enjoy some terrible bed head selfies I sent to a friend but don't have enough sense or shame to keep hidden.

Superstar, criminal kittycat & pumpkins

Cycle 1 Day 7

Lots today, let's do bullets!

• Thomasin is a cute criminal (but very much a criminal)
• Thomasin is surprisingly good on a harness ❤️
• You should imagine me, driving down Balm Beach Road (short bit of highway between two towns, 80 limit), windows down, singing along with Karen Carpenter to Superstar, because I was on Balm Beach Road four times today and it happened each time (add karaoke to the remission list)
• I love carving pumpkins, but I love eating pumpkin seeds even more (a project for tomorrow)
• I love garlic bread as much as I love pumpkin seeds
• Get your fucking booster, it's one of the things anyone can do that takes no effort that makes my life, and the life of all immunocompromised people, a little easier (it also helps you ❤️) (Ontarians of all ages can get the bivalent vaccine starting the 26th) I got mine today because I'm immunocompromised now and we qualify early
• That's all, friends have a great night ❤️ (and maybe to listen to Superstar, if only to sing along to the chorus)

Addendum:

• Sweet Chilli Heat Doritos remain the best instantaneous cure for nausea available commercially, which honestly makes no sense but has been true since at least 2007

From the comments

Good days are possible with chemo

Cycle 1 Day 6

Even when you're sick with a potentially terminal illness, some days are just days. I did hobbies today. I played video games. I listened to podcasts without skipping around to only get light subject matter. I got some okay chip truck fries and baked them in a convection oven twice to make excellent chip truxk fries. I fired up my 3D printer for the first time since I was in trade school to make a joke at my own expense. I finally, one year later, finished modifying a Value Village tripod and took not great (but lots of fun) night photos.

Some days are just normal. They're rare. I treasure them.

From the comments

James Petrosky: This is from 2020 but the GoPro software is hinky and uploaded it again and it's a really good photo of Thomasin and I so why not share it again ❤️

Feeling good five days after chemo

Cycle 1, Day 5

On day 5 I finally felt good enough to actually do stuff. It's wild to walk out of Canadian Tire and feel "yes, that was a pleasant trip that I both needed to take and did not make me feel upset in any way".

My apartment has never had a number on it, which has suited my desire for privacy, but not being monstrous to home care nurses ranks pretty high on my list of desires.

Plus! The weather today is extremely late summer/early fall and the breeze is perfect. I might take a picnic to the water if the weather holds.

I still feel a little sick, like I could throw up, but not like it's iminant. I'm getting used to it, but I'm feeling unwell most of the time. I don't think I can enjoy apple anymore, at least for a while, which is a pain because apple sause is one of the main foods recommended for this sort of queesy feeling in general, and especially for chemo patients.

From the comments

James Petrosky: Eff it, it's a bit cool out (newly repaired thermometer reads 21.7C) but I've got the body fat to sit outside in the shade (one of the chemotherapy drugs makes you very photosensitive so it has to be the shade) so bonus recreation of an earlier profile pic

Evening squish

Maurice and I, exhausted at the end of the day. Turns out the 5km and the agonizing pain of the drive home (just 20 minutes, but a 20 minutes that stretched forever) was overdoing it. I've barely been out of bed since, except to be bad at labour solidarity and buy some pizza.

The fatigue has crept up on me so carefully and quietly that I only noticed after it became completely overwhelming.

I still experience happiness and joy, and am still driven by hope, and these things aren't failing. But I'm just so tired now.

Thank you, everyone, for your kindness and your words and your attention. It's so much easier to stay hopeful when I feel noticed, seen, wanted. You're all amazing ❤️

Afternoon squish

Afternoon. I over did it on the walk. I nearly pulled over several times during the drive home because sitting is one of the worst positions to be on, but walking is fine, and helps a lot in the short term. I want to be able to drive myself to most of my appointments, but if it keeps up like this, I'm not going to be able to. Long term I have significantly more existential fears, but short term it's all about losing normal, and I'm terrified of losing the normal of mobility in my life. I have enough friends and family to get me through this if I do, but it would be devistating for my mental health.