Saturday August 26, 2023
Look Back
I have a few ideas that I don't see a lot in cancer circles. Nothing off the deep end like dubious treatments, faith healing or denial (but then those ideas are everywhere across the internet, you'd have to try to avoid them). Simple things, analogies. My favourite is cancer as a siege, rather than a battle. When I pass, I won't be because I lost the battle to cancer, I lost that battle up to a decade ago, years before most of you knew me, and well before anyone would ever do any screening (possibly, although not likely, before my oncologist was even a doctor). Cancer is a well provisioned army, giving seige to your body. Without help, you will sucumb. There is no dishonour in that (which I feel is an unintended implication of losing a battle, you may differ, that's fine).
I think this is the first time my second favourite analogy comes up (it comes up in the comments, not the post). I think it applies to any big change in your life, at least so long as you can accept the implications piecemeal. Those days are completely blocked off to me, they're just a haze of belly button pain, a new, sharp, existential terror, anxiety and a complete lack of sleep. I don't remember what it all felt like, but I do know that I needed those pain killers, and that by needing them I couldn't do a huge part of my job anymore. And that put a timeline on telling my boss about the situation, which put a timeline on letting HR know, etc.. And I know that doing preparation for a colonoscopy at 35, in a maintenance shop with several middle aged men, was only going to beg questions I did not yet want to answer. And that once you've taken a couple of days off for medical testing, even the youngest guys start to get wise.
Every medication, test and appointment brought more scrutiny, and how could they not? People care, they're curious. And when all you want to do is have eight hours a day where you can pretend everything is normal, each bit of that attention spoils your ability to pretend. Until you can't, and you tell everyone how dire the situation really is.
I am glad to be well beyond this stage. I love the currency metaphor for the period in my life between diagnosis and chemotherapy. But I'm beyond that chaotic mess of emotions and personal ignorance. I cannot say I am happy to know everything I've learned in a year, but as best I can remember not knowing anything was much, much worse. Its come up a few times in conversation, but we all genuinely wondered if I'd make it to 2023. And that uncertainty felt much worse to me than knowing that I have between 400-600 days.
The following was originally posted August 26, 2022
Good news! I have something for the abdominal pain now.
Good news! It works really well!
Bad news! I have about the same tolerance for T3s as I do for everything else, so that's fun.
From the comments
James Petrosky: This would be fine if they were for home, but less so for driving and work (especially because the position I'm physically in for driving is really bad for pain.)
James Petrosky: It's great to feel at home in my body for the first time in a year, but the cost is a little bit more of the normal I'm coming to miss more and more every day.
James Petrosky: I've wanted to make posts about "the thing they don't tell you about cancer is" with a thousand little adjustments (buying a new large bottle of extra strength Tylenol every trip to the grocery store, when normally one a year was a lot) but the reality is that you really cling to everything that still feels normal, knowing that many of them have a time limit (the big one for me is work, I think I probably have 2-4 weeks before I go on leave, and I'm not ready to recon with that yet). Today I learned that my reaction to T3s means that I have to give up forklift driving and height work or be risk fairly severe pain. That is a lot of normal lost, and a lot of either lying about why or filling people in on the situation.
What they don't tell you is that normal is the currency you pay along the road to treatment.
And every time you make a payment, the part of your brain you can take a mental break from it in shrinks. Until all that's left is existential terror and exhaustion, from the disease and from the side effects.
That's pretty fucking bleak, I'm not feeling that trash tonight. I have felt that trash, I drove 6 hours alone in pain knowing every second of the trip that the reward I was looking forward to was breaking my parents' hearts with this fucking news. Nothing will ever feel like that.
I'm alright tonight. A little bit high on T3s. Watching math videos and playing with my stupid electronic toy instruments. If I was healthy right now, I'd be doing exactly the same (except it would be cannibis)
Thursday September 22, 2022
Diary
Cycle 1 Day 8
The PICC line goes directly from your forearm, usually non dominant, to your heart, following large veins. This makes it a extremely dangerous potential route for infection to easily and directly reach your heart, with consequences as dire as you'd like to imagine.
I have two red lines that, if crossed, I'm told I must immediately go to the ER for emergency intervention. They are above 38 for an hour, or above 38.3 at any point. When I'm running any sort of fever (for me, I've set my cutoff at 37, because I rarely stray beyond 36.5), I'm to take no medications that lower a fever.
All my painkillers are Tylenol based. They all lower a fever. So I'm also in a lot of cancer pain, with a cold style headache on top of it.
Long preamble to say that this morning I had a fever that peaked at 37.8. I didn't panic, but I did have a very tense couple of hours. Yesterday, I got my 2nd Covid-19 booster (hurray bivalent vaccine), which was almost certainly the cause of this. But I also had my PICC dressing changed, and the nurse was extremely careful, but who's to say I didn't get an infection (well, I am, now, but at 5AM that was not clear).
The tldr of it is everything about cancer treatment, or any treatment, is a trade off of risks and benefits. The PICC is a tremendous risk, but also a fantastic benefit. I was not ready for the level of responsibility I have to take for my own body during this. But it's a wild and fascinating ride
My face when my temperature went up for the 3rd consecutive hour (probably 37.6 here, I jumped into go mode when I got 37.😎
Relief after reading 37.4 (also exhaustion)
From the comments
James Petrosky: To be clear, I'm in no danger. I never was actually in any danger. And if the situation had turned, I had everything ready to go to address the situation before it turned truly dangerous.
My partner and I have talked through all this stuff with the oncologist and nurses. We're not expects by any means, but we're informed and empowered and ready to act when needed. ❤️
Also, the side effects were much more minor for me this time. I got a proper fever all the other times, and were I healthy and working I'd probably have gone in today without even noticing it. So yeah, bivalent vaccine: 👍👍
Tuesday September 06, 2022
Diary
Early morning, with Felexine. I haven't really slept well at all, the pain has been too intense. I don't think anything has changed with disease progression since last week, I think it has to be behavioural. I'm pretty constipated from the T3s, and that is at least part of it. I need to call my nurse practitioner about work paperwork regardless, so I'll ask then.
I'm going into work this morning to hand in my short term disability paperwork. And to tell the final people who don't know what's going on, and telling them I'll be away for at least six months. I was dreading this all last week, but after Friday it doesn't seem nearly as bad. The benefit of perspective, I guess. Everyone's going to be supportive, but it's still going to be an exhausting morning.
Friday August 26, 2022
Blog
Good news! I have something for the abdominal pain now.
Good news! It works really well!
Bad news! I have about the same tolerance for T3s as I do for everything else, so that's fun.
From the comments
James Petrosky: This would be fine if they were for home, but less so for driving and work (especially because the position I'm physically in for driving is really bad for pain.)
James Petrosky: It's great to feel at home in my body for the first time in a year, but the cost is a little bit more of the normal I'm coming to miss more and more every day.
James Petrosky: I've wanted to make posts about "the thing they don't tell you about cancer is" with a thousand little adjustments (buying a new large bottle of extra strength Tylenol every trip to the grocery store, when normally one a year was a lot) but the reality is that you really cling to everything that still feels normal, knowing that many of them have a time limit (the big one for me is work, I think I probably have 2-4 weeks before I go on leave, and I'm not ready to recon with that yet). Today I learned that my reaction to T3s means that I have to give up forklift driving and height work or be risk fairly severe pain. That is a lot of normal lost, and a lot of either lying about why or filling people in on the situation.
What they don't tell you is that normal is the currency you pay along the road to treatment.
And every time you make a payment, the part of your brain you can take a mental break from it in shrinks. Until all that's left is existential terror and exhaustion, from the disease and from the side effects.
That's pretty fucking bleak, I'm not feeling that trash tonight. I have felt that trash, I drove 6 hours alone in pain knowing every second of the trip that the reward I was looking forward to was breaking my parents' hearts with this fucking news. Nothing will ever feel like that.
I'm alright tonight. A little bit high on T3s. Watching math videos and playing with my stupid electronic toy instruments. If I was healthy right now, I'd be doing exactly the same (except it would be cannibis)