Cycle two
Cycle 2, Day 1
It was so much easier this time.
Cycle 2, Day 1
It was so much easier this time.
Cycle 1 Day 14
Tomorrow starts Cycle 2. There will likely be six cycles, then some more testing, and then we'll know how well all of this is working.
I'm feeling a lot more calm and comfortable this time. I've got a good idea what's coming (three days of barely getting out of bed, one or two more feeling pretty rough), but I know I can expect the rest of the cycle to bring some energy and a lot more joy than I've been used to the previous couple of months.
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:
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 ❤️
Mica: Have you seen the anime short of the little girl who gets turned into a gengar? So cute
Cycle 1, Day 12
I haven't felt this good in months. My pain levels, while still much higher than my pre cancer baseline, haven't been this good in months. I have energy, apatite, drive. Chores are caught up, projects are being done, hobbies being perused. But there's so much to do before Cycle 2 starts Thursday.
David: So you can do this ?
James Petrosky: David I'm going to keep going for sure. It's not a war or a battle, it's a seige. I'll hold as long as I can.
James Petrosky: I saw my poodle pal today ❤️
It was almost too dark for her goofy face
Cycle 1 Day 11
Cycle one is drawing to a close and I have A Lot of appointments this week. And I know I'll be bedridden for the first five days of cycle two at least, so there's a lot to do. But for now, I keep busy, I work on projects, I find water birds in new and exciting places. It's not the life I expected, but I'll still make it mine.
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
James Petrosky: Also I think I have a problem
James Petrosky: I'm not great yet, but I have lots of time to practice
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.
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
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: 👍👍
Cycle 1 Day 7
Lots today, let's do bullets!
Addendum:
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.
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 ❤️
Cycle 1, Day 5
It was a good day, with good weather, and that should be remembered.
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.
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
Cycle 1, Day 4
To properly protect you from bacterial, and especially viral, particles, a mask must be properly fitted to your face. And a chemotherapy patient should be properly protected if they want to maintain some sort of normal life by going to shops and such.
I didn't have to go so complete here, but I thought it would be easier to cut as it comes back in to fit the mask rather than the opposite. I'm having some major doubts right now, though 😛
I didn't shave closer because unnecessary cuts are also a risk to be avoided, so I'm stuck in this in between worst of all worlds (and it's pretty funny, I'm laughing, at least)
Cycle 1, Day 3
The chemo bottle has been removed. It was good to get out of the apartment, and I'm going to need to balance getting out with how low I feel on days 1-3. I wasn't going to get Tomara, but I take frequent emergency washroom breaks, now, and the mall in Barrie has the cleanest washrooms with the lowest human density (fast food is much much more crowded). Anyways, this charmer called to me and I have poor impulse control.
The next one I'm allowed to get for myself is after the end of the sixth cycle.
I wanted to post more, but my hydro's been out since early this afternoon and I don't have the light to do it. Tomorrow, perhaps.
Cycle 1, Day 2
I still have my take home bottle of chemo, it'll be removed late tomorrow morning. I'm not sure which of the drugs caused it, but I threw up last night. I've mostly slept since all day, but did get to see my parents before they returned to Northern Ontario for a few days. I had three phone calls (two followup, one scheduled) and I'm exhausted.
James Petrosky: The bathroom of a chemotherapy patient is considered potentially hazardous. Other humans can use it so long as they follow a few ground rules, but animals are not allowed in.
Some animals are extremely offended at this
James Petrosky: I tried to capture it, but the lighting wasn't great, the dark blue pouch on my torso attacked to the belt I bought in Peru over a decade ago (and finally found its use) is the chemo bottle. It's a lot less of a pain than I thought it would be, the only slight challenge is keeping Thomasin away from a fun fun springy hose. She's been good, though.
Cycle 1, Day 1
I expected that to be a lot worse.
Tomorrow is it, day one of my first round of chemotherapy. I'd be lying to you if I said I was okay, or that I was calm, or ready. Because I'm none of those things. I haven't even fully come to terms with my diagnosis. There's been no time, and getting to this point as fast as possible has quite literally been a case of life and death. I'm exhausted, I'm anxious, I can't sleep.
Tomorrow beings answers to important questions like how will I tolerate chemotherapy, what are my side effects going to be like, how careful am I going to have to be.
Tomorrow brings hope. The only way out of this for me is through the cancer centre, through these appointments. It's absolutely terrifying, every single part of this has been terrifying. Every new pain has been the terror of further spread. Every Covid-19 type symptom for months terrified me that I'd delay this process (and now will cause anxiety because I'm about to become immunocompromised). Every single thing that is slightly abnormal is a new horror. And they will all remain horrors, the thing that has replaced university exams or abusive Target liquidation customers as the antagonist of my stress dreams. But, tomorrow, I also to start striking back. And that's not nothing.
The PICC line, for those (like myself) who were unaware, is a line inserted into a vein in my non dominant forearm that extends to the heart. I'm glad I was ignorant until minutes before the procedure, because that is the stuff of nightmares for me, even if the actual result felt, at worst, a bit weird
There are many sorts of chemotherapy. Which makes sense, cancer is a collection of diseases of various tissues.
There are many sorts of chemotherapy. Which makes sense, different tumors and different cancers are going to have different vulnerabilities.
There are many sorts of chemotherapy. Which makes sense, side effects are an important consideration, and the risks must always be balanced with the benefits of the drugs.
There are many sorts of chemotherapy. Which makes sense, some are used to prepare for surgery, or to remove the cancer completely. Others are palliative, used to prolong life and minimise pain.
Friends, my chemotherapy is palliative. Which isn't to say my oncologist has given up on me, this round of chemotherapy is simultaneously the correct standard of care and the necessary first step to get a more advanced treatment.
The PICC goes in tomorrow, and the first round of chemo starts the day after. I've never been more tired and overwhelmed in my life.
My parents are visiting this week, which is a great comfort, and they've brought my best poodles, Annie (golden labradodle) and Bessie (black standard poodle). I've saved this post for the day I got lots of good photos, maybe it'll help lighten things a touch.
Once installed, a Peripherally Inserted Central Catheter (PICC) line must be cleaned by a qualified medical professional once a week. Since in hospital chemotherapy appointments happen every two weeks, they arrange a home care nurse to visit during the off week to clean and maintain it. Here you see me, once again outside the laundromat, after having a long difficult conversation, detailing my whole medical history, just exhausted by the crushing reality of it all.
Three more days.
(My arm's up all goofy because my seat is leaned back to about 45 degrees, because of the abdominal pain, and there just wasn't much else to do with it.)