A relaxing afternoon
Cycle 1, Day 5
It was a good day, with good weather, and that should be remembered.
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.)
Fun fact! Phone anxiety only gets worse when it's literally a matter of life and death
James Petrosky: Okay I whine but I think it's all done. Turns out the trick is to short circuit my worry circuits with the care circuits by putting "order flee medication for Thomasin" last because I will always put off stuff for me but cats are much too important
James Petrosky: To anyone worrying, it's important but not iminant. I need to get some CT scan results to someone at another hospital, but apparently the best/only way to so that is a USB drive.
James Petrosky: It's not like I'm not calling an ambulance because I'm too nervous, is what I mean.
Stefanie: James Petrosky really in this day and age they can’t send the files over in a better more accessible way? That’s really unfortunate
James Petrosky: Stefanie patient confidentiality is the killer, I think
Stefanie: James Petrosky it makes sense but it’s unfortunate given you probably can’t like mail it
James Petrosky: Stefanie I think it's a USB drive, so I might be able to mail it. Once I have it I'm calling and asking how they want it sent
James Petrosky: It's a CD/DVD. What is this, 2005?
I can't even look at the files 😆
Stefanie: James Petrosky damn that’s really old school (says the nurse who was still sending out patients with CDs last year 😆) yeah you probably can’t because of software needs and they put some super security measures on them for confidentiality
James Petrosky: Stefanie no I can't because I haven't owned a CD drive in almost a decade
I've been under no illusions about my situation since I first learned of the diagnosis, but the past few days have been the emotional weight of it all coming to fully rest on my shoulders. It's been hard. Really hard. I'm tired a lot and today I has to give up on something because it causes me physically too much pain. I'm still haven't fully accepted that, yet.
But I met some swans up close, and Thomasin is very cute, and I have amazing friends and family (all the readers included ❤️) and I'm excited/terrified that I start chemo in four days.
Thank you all for sticking with me so far ❤️
James Petrosky: Other junk I didn't get photos of but I found super exciting to see at the marsh:
Sarah: You've got this. And sometimes you will feel like you don't. And that's okay. I think the biggest lie that people are made to beleive is that they have to hold it together and be strong. But it's okay to be soft and get messy. You're entitled to it and those feelings are perfectly valid. Be gentle with yourself, give yourself grace and cry when you need to. Treat yourself and give in when you want things thay bring you comfort. You deserve those things.
Would you believe I'd never been to an Arcade? Or won something cool in a claw game? Cross those of the list. Galaxian was my second favourite Arcade game going up (a Windows 95 port) (Asteroid was my favourite, but the table was broken today). The driving game was tremendous fun, but making hard turns without the forces your body expects is weird and made me dizzy.
We also played a bunch of skee ball, but were having so much fun we forgot all about photos. We wanted to play some Adams Family (1991) pinball but some very good pinball players were ahead of us, maybe next time.
*so I know none of these are actually selfies but that's because it's impossible to play these games and hold your phone.
Its not all bad, all my silly stuffed animals do honestly help. I surround myself in them and it's comforting. Except for Thomasin, who protests until she gets a whole side to herself.
Also, cheap supermarket sushi lunch. I can only eat sushi for another four days so I'm enjoying even the cheap stuff while I can. But someone else was also really interested in it, so we had to battle a bit. Don't worry, it's tuna melts for dinner, she's going to get her favourite fish, too.
Today was not an easy day. I managed to get a few things on my todo list done, but spent most of the afternoon in bed sleeping. I'm tired and my mood is low. The feeling passes, but there's a strong temptation to dwell there.
James Petrosky: I did try and get a change of scenery to break the mood, but that truck was parked in my driveway blocking me in. After a decade of knowingly struggling with mental illness, I have a large toolbox for dealing with this sort of thing. But sometimes we're thwarted, and sometimes we fail, and that's okay. Thomasin, as always, is a delight and a help, and honestly filling my bed with cute soft toys had a much bigger positive effect than I would have thought.
We've earned some more nice things I think.
James Petrosky: I don't reallt care how any individual person reacts to this, live your life, but it's goosing wild to put your cat group into mourning, with no posts for a day
Had a good day, saw a relative, received an amazing gift, went to a restaurant with a 2nd floor porch patio overlooking the beach. A good day. But the bottom still fell out. I'm not alone, I've never had more support (and Thomasin has never been more clingy), but I still feel that way. The feeling passes, but it is powerful.
Late night. Sometimes, there is no naritive. Sometimes, you just go to the beach to watch the moon reflect in the waves. Sometimes, you make a new smol skunk friend.
Sometimes you've saved up enough energy to just pretend things are normal for half an hour. And the moon and the weather and the trash friends just play along with you.
I wanted to go for a walk, but Thomasin had other ideas. She loves cuddles in the computer chair, and I sit with her as long as I can, but it's often a very painful position. Tonight I had to get up first, and she's sulking about it.
Today has been an exhausting day, physically and mentally. Mentally, going into work for the last time before treatment was a lot. Everyone has a different way to process bad news from an acquaintance or coworker. And I've been unable to control the pain at all the last couple of days, I have some ideas why (because nothing materially changed with my condition the last few days, so it's got to be behavioural in part) and I have an appointment with my nurse practitioner next Tuesday, so we'll get this solved.
Anyways, ice cream always helps. My favourite place is soon to be closed for the winter, so I simply must take advantage before then. Thomasin has become aggressively cuddly, she really enjoys when I spend lots of time at home, so at least someone is going to benefit from my situation ❤️
Some bonus Thomasin