Throughout this course of treatment, I've reliably spent between 5 and 7 days of my two week chemo cycle throwing up. Taking my as needed medicine got this down from many times a day to a couple, and cannibis use eliminated the problem most nights, but the problem remained: I was regularly being sick, and when you're sick, it's really hard to make yourself eat. Which leads to unwanted weight loss, chills and laying around in bed all the time.
At the start of cycle 6, we slightly reduced my dosage of a few chemotherapy drugs (we aren't trying to prep me for surgery anymore, I'm trying to have as much of a life as I can, so it made sense. We also added an expensive (after drug plan it's still 20$ a dose) anti nausea medicine. And it might as well be magic. I haven't even felt mild nausea in two cycles, almost three weeks. I had a lot more nausea in the months leading up to resuming chemotherapy in November. And with no nausea, I have a desire to eat more and better food, and the energy to actually cook. I have more days I can be out of the house. It's fantastic. I'm glad I can afford the drug, because 20$ is buying a whole lot of quality of life for me right now.
At the cancer centre on day 1 of cycle 6
At the cancer centre on day 1 of cycle 6
At the cancer centre on day 1 of cycle 6
From the comments
James Petrosky: She doesn't look it, but Thomasin was purring through our little photo session. She'd have been happier on my lap, but she's a good sport
It's been a while. I've lost all my hair. Visited the chemo suite a few times. And been significantly more active outside of my apartment than I was last year. It hasn't been easy, and it's been slow going, but we're more than half way to my next CT scan, which is still a major treatment milestone for me. Like last year, it's two groups of six cycles and a CT scan to complete this treatment plan.
I started this treatment plan with some digestive symptoms, a lot of nausea and vomiting, and a mild-medium pain in my right kidney. Digestive problems remain pretty constant, but the cause is chemotherapy, not cancer, now. At this point I can tell pretty easily. I still experience a fair amount of nausea, but it's limited to the treatment part of the cycle, a huge quality of life improvement. My kidney is doing better, and no longer causes discomfort, but will require monitoring for the rest of my life (it's part of my standard bloodwork, though).
We're back in the swing of things, the rhythm of treatment is normal again, and it feels as good as this sort of thing can.
They were giving me hydration, which is just IV saline water, to help flush the chemo out of my body after treatment. We don't know if I need it, but we gave it a go because of the kidney
You can see the line running from my port up to my jugular
Fancy dress, maximum hair extent
At the Big Nickle in Sudbury
Sometimes you've got to cuddle a cat to punish her a bit
My goose friend, Frigg
The beard is getting a little (a lot) patchy
A half volume beard is way itchier than a full one, it needed to go
I got tired of vaccuming more James hair than Thomasin hair, so it had to go
Christmas kitty
From the comments
James Petrosky:
Bonus Thomsin!
James Petrosky: It's harder for me to talk about things this time around. It's all so normal now. It's cycle three, but it's also cycle twentyish. I don't have anything new or interesting to say about chemotherapy. And we're not working towards something exciting, we're doing it all because it's part of the assumptions that go into the prognosis calculation. It's how I get my year. Which is hugely meaningful to me, and those around me, but it's not sexy like major surgery.
Human beings will adjust to anything.
Just ran into the limits of my lung capacity singing a song to annoy Thomasin (I don't like Muse, but she fucking hates Muse, so it's worth it)
From the comments
James Petrosky:The song was Starlight, covered by a guy who hates Muse in reality as much as I imagine Thomasin to, but she generally likes when I sing their other songs to or around her, so it's gotta be the Muse she hates
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.
The best worst pillow that is no longer at Homesense because we bought it ❤️
The chubby baby has enjoyed my increased lying down timme ❤️
A deal with death
Halloween
Halloween with Lilly ❤️
The maximum extent of my curly hair and crazy beard. The moustache became too long and thin to curl properly a few weeks ago, so it won't make an appearance
Today I left Elliot Lake and returned home to Balm Beach, Ontario. Since we departed early in the morning on June 8th, I've only seen Thomasin for around half an hour. I adore Annie and Bessie, my Poodle Pals, and don't know how I'd have handled the last month without them, but I'm overjoyed and relieved to be with my cat again. And she's never been this affectionate. I know I'll eventually have to leave her again, but until that day we're together.
Suspicious berries in Elliot Lake (actually just mountain ash)
Northwest Trading Company, Espanola, Ontario
French River Trading Post, French River, Ontario
Home!
She doesn't like being held, but endured it for me
From the comments
James Petrosky: My incision still has a lot of healing to do, and I'm still restricted on how much I can lift, and the motions I can make. If I were planning on returning to work, I'd still be off for two months.
Oh hey! It's the anniversary of the start of the worst, hardest two weeks of my life. But today's the day I get to return home, too, where Thomasin awaits. Truly a mixed bag of a day.
We must choose to focus on the good, however. Which is pretty easy when she's so soft
James Petrosky: For spoilers, August 5th is the day I traveled five hours, alone, to tell my parents about the cancer diagnosis. I do not recommend, but I can't think of another way I'd have done it.
But the two week period wasn't all bad, I watched a lot of Universal Monsters movies while I had covid, and still think of those quite fondly.
Gang, I'm so tired. Tired of counting cycles. Tired of the side effects. Tired of living in a sort of constant existential terror.
I took a walk to the beach, roughly 400m, and found myself lightly winded when I got there. Walking back was the same story. I've been doing some basic yardwork, collecting leaves that fell on the patio stones mainly, and after three hours of medium-light labour I'm so exhausted I need a nap. I've never been the most fit person, but even at the peak of my cancer pain on the late summer I was still able to work (medium-heavy labour) fifty hour weeks without wearing myself out. It's a lot to get used to. And to add further insult, my nose has been running constantly for the last month. It's a known side effect, but it's gross and frustrating.
For the sake of my mental health, I need surgical dates to look forward to. I'm hoping I hear something this week
From the comments
James Petrosky: Most of the time I'm pretty comfortable with my mortality, but the anxiety and depression and exhaustion have a way of eroding the peace I've made and found.
James Petrosky: My personal nurse has been a tremendous help, though
Twelve cycles is the number originally requested by the surgical team at Mt Sinai. Tomorrow I go for a CT scan to see how the cancer has faired the last three months. Saturday I speak with the team. I'll learn if the tumors have shrunk, about any possible spread, about the anomalies in my lungs that haven't yet changed over the course of treatment (these are almost certianly fine, but I'm an anxious person), and, hopefully, about the scheduling for my first surgical procedure.
I'm scheduled for a 13th cycle next week, but if the date is soon enough, it's possible that will be delayed. I don't think it's likely things will move that fast, but my medical oncologist is the one who put the idea in my head, so it isn't impossible.
It's been an exhausting six months, and an extremely painful nine before that, but right now I feel hopeful, that I've finally made up enough ground that I can be hopeful about this more aggressive phase of treatment.
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.
Some things change over a year, others don't
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.
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.
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.
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.
Perfectly centred in the chemo centre waiting room
Chemotherapy always leaves me a bit flushed looking.
Hanging with Gengar in a strange room. Thomasin is hiding in her carrier.
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.
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.
This is actually from Monday, but it was a pretty uneventful day.
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.
Before chemo, sitting in my car at the hospital. I didn't sleep well last night and it shows.
During chemo, featuring the symptom managing, life prolonging medicine and its super cool perstalic pumps
After chemo, home in bed, where I'll stay until Saturday
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 ❤️)
Today was a much better day than yesterday. I threw up today. Quite a few times. But it was an overall good day. Never in my life did I expect to be here, but life can be strange sometimes.
This cycle we added a new drug to my chemotherapy cocktail. I'd been on something called Folfiri, which is a mixture of three drugs used to treat stage four colon cancer (and probably other things, too). This time we added a drug called Avastin. Avastin is used to treat a wider variety of cancers, and, very generally, acts to restrict blood vessels to tumors.
However, none of these drugs are targeted. And Avastin has some wicked side effects. I've had crippling headaches all week, and I suspect that my recent vomiting is also related. Happily, I have an appointment with my symptom management doctor next week, so I'm certain we'll be able to either resolve, or at least make manageable, these side effects.
When I take a car selfie, I try and do it with style. Too bad my BURN THE GOAT pin isn't visible (look up Gävle Goat for more info)
