Tomorrow is my 36th birthday. Today is six months, to the day, since I learned I had cancer. Almost exactly five months since I met my oncologist and learned how serious it was. Five months since I've been off work.
I'm hanging in there. I'm almost always a bit tired, and need a lot more rest than I used to. I'm frequently cold, and even though the apartment is a very comfortable 23C I always wear a sweater. Even if I had the energy for long walks, chemo does bad things to your digestive system and I just can't be that far from a washroom.
One more cycle until we move to the next stage. It's exciting, but I'm starting to build anxiety about major surgery, and if I'll even get it. But I'll keep doing one thing at a time until it's done.
From the comments
James Petrosky: Gang, I'm just so physically and mentally exhausted by this. I wish there was a way to take a vacation from it. But I know the pain would come right back, and that's no escape.
I'm pretty used to 'brain fog,' it's a common symptom of my more severe depressive episodes. The cancer/chemo related brain fog isn't worse, not really, and doesn't feel fundamentally different, except that it's constant. With depression, it goes away as my mood improves. But here? It doesn't care about mood. I spent a couple weeks hypomanic and foggy, which if you asked me a year ago I'd have said was impossible. I've noticed I've had to reread and rewrite more than normal, and that my focus is worse, too.
I'm told that I can expect to start to feel normal after I'm through with chemotherapy, which isn't happening soon, but I've only two regularly scheduled cycles left.
From the comments
Britta: dunno if you already follow Jacob Sharpe, but he's a very funny comedian who had brain cancer and makes fun of the "religious/positive" cancer posts here very well. He talks about how the sugar coating, "not today cancer!"/"keep calm and fight cancer" memes are well meaning but whitewash the reality of the experience. As someone who isn't religious, I thought you might particularly find this amusing.
"If God is making up this cancer war, and I have to fight -- he's bored, and he's an asshole."
James Petrosky: Britta R. Moline I'm in the middle of an actual play right now, but I'm adding this to the list
James Petrosky (7 months later): So I forgot to add this to my playlist, and only just rediscovered it just now. And yah know what? Its probably more enjoyable to me now that I'm doomed than it would have been while going through it.
Today was the day I finally took an electric cutter to the remainder of my long hair. I've half wanted to do it since November, but I liked the reminder of the long hair I once had. I've no future plans of ever getting it cut again, but I'll probably do another trim if it ever gets quite that uneven in length again.
James Petrosky:
- its really hard to trim your own hair. Doubly so without use of a mirror.
- it's a toque, not a beanie, if you must refer to it.
Tomorrow is chemo day. There's been so many of them now that I don't feel anxiety about it anymore. It's just part of the rhythm of life. The main pulse in the rhythm of my life now, even. I'm not looking forward to it, I never do, but I'll take my medicine without further complaint, and make myself a little nest in my bed and sleep the rest of the week away, with the company of Thomasin and some VOD curling matches I found earlier this week.
From the comments
James Petrosky: On Sunday I found the VODs and managed to catch Curling BC's women's final, I watched it the same time as I watched a stream where someone went through and explained the Roland 606 drum machine circuit for the kick drum. It was the perfect combo for me.
I had an appointment with the surgical oncology team at Mt Sinai this morning and the news is good: they agree that the CT scan results were positive and that we're still on track for the HIPEC surgical option.
I'm on cycle 9, and have three more cycles to go until another CT scan. If the surgical team likes my progress, I'll remain on chemotherapy for as many cycles as it takes to be scheduled for laparoscopic surgery, a major stepping stone on the way to the HIPEC surgery I hope for.
Right now my two biggest fears are that either I fall ill in my immunocompromised state, and miss treatments and get scheduling all screwed up (I've worries about my health more intrinsically, too, but they're not relevant here) and that the ongoing pandemic floods hospitals with patients, and elective surgeries like mine are cancled again. I don't even go through drive through's without an N95 mask on, so at least I'm doing my best to control what little I can.
From the comments
James Petrosky: I included some less positive stuff out of a need to tell a complete story, but this is genuinely good news. The surgical team is a lot more experienced at looking at the specific sort of cancer I have. The medical oncology team at the Royal Victoria Regional Health Centre is extremely skilled, but the way Ontario organizes cancer treatment means that the central institutions have the expertise. So it's confirmation of a thing that was itself confirmation of how I'm feeling, but also tremendously exciting and good news.
Just six to eight more weeks until the next update, which is hopefully more of the same.
James Petrosky: To rain down a bit again, nothing is guaranteed. I'm a good candidate for HIPEC, but that doesn't make it a sure thing. And the surgery itself isn't necessarily curative, and in the vast majority of cases gives the recipient extra time.
I'm choosing to focus on that small curative chance, but I never let myself forget that it's all up to the fates. It's the only way to stay emotionally level.
Morning. I've always toyed with the idea of dying my hair, but I had figured the point in my life where it made sense had passed. I work in a fairly conservative workplace and it made more sense to let this particular thing go. But with the threat of losing my hair looming? Heck no we're doing this shit.
A month less a day earlier, I learned I had cancer. In two weeks from today, I start chemotherapy. I don't want to rank my bad days, but these two are easily the worst of them. Its only through the power of amazing sushi (and my wonderful partner) that I look so calm here, because there do not exist words for how I felt.
Out goes the 1 Squishmellow per procedure plan, might as well just pile them on (Maggie the manta ray, Nabila the narhwal, Maurice the moose).
I never made it to work that day. So I never got to tell the people I wanted to in person. I'm sorry for that, but I can still barely function when writing this on the 4th.
From the comments
James: I have to tie my hair back to wear my N95 masks, I don't love how it looks but fashion must be sacraficed for health
I reflected on this on September 1, 2023This was written on September 4th, 2022
After my shift. I rarely take photos of myself at work. I like my uniform, it's extremely practical. These are some of the only photos that exist of me in it. I had promised myself that I'd take Friday off if it didn't go great, and I guess I was doing the "hope for the best plan for the worst" thing.
Hours before what I didn't yet realize is my last shift for months. I felt good about it. Tomorrow, I'd get all the information from the oncologist and fill in everyone at work I cared about enough to want to tell. I was right about the shift, it was a great one to go out on, I was wrong about Friday.
Insurance forms are wild. "List the symptoms of your illness that prevent you from working. List which job tasks you can still preform" weren't you listening when I wrote one of the worst four word phrases possible in the English language? And you want to know if I'll still be able to bend conduit while hooked up to an IV.
Fuck these ghouls.
From the comments
James Petrosky: Those words are "Cancer that has spread", although that phrasing only makes sense on a form. The real life equivalent is "you have cancer, and it has already spread" and I don't wish that statement on anyone, whoever wrote this form should really consider that someone who's going to fill it out did and not be the worst cog in the machine about it.
With the oncologist appointment Friday, this week has taken a profoundly weird turn. I want it all to be secret, to pretend it isn't real, but the pain is getting to a point that I can't even move normally, require naps to get through the day.
Work friends who found out this past week, I'm sorry, I almost said something several times every day I came in this week. But shooting the shit like everything was normal felt so good, and I needed that feeling for as long as I could have it. I don't like to have lied, but it couldn't have been otherwise.
Good news! I have appointments with two different oncologists!
Bad news! I have appointments with two different oncologists.
From the comments
Ron: Because two different cancers or...
I wanted to say it's good to talk to different professionals about something this important but then it occurred to me.
James Petrosky: Ron two different treatment styles, I think. My understanding, the first is a traditional surgery and chemo option, the second is a more aggressive hybrid approach. The first is at a regional hospital and the second is one of the major hospitals in Toronto
Ron: James Petrosky Given the unfortunate delay in your diagnosis I suppose aggressive might be called for, but honestly cancer scares me enough that I definitely just reflexively equate aggressive with good when it comes to dealing with it. I'd nuke it from orbit if I could
James Petrosky: Ron Bedison I'm fortunate that otherwise my health is still fairly good, so going off absolutely no information I'd also opt for the more aggressive treatment. But more than anything else I'm so in the dark and I just want information.
I think I look sad here, and I have many reasons to, but I don't remember why specifically. I think it's the laundromat, and I've just gotten off the phone with a nurse at the Barrie Regional Cancer Center. I've said multiple times that the currency of this past month has been normalcy, and few things ruin your sense of normal like that sort of phone call.
Nothing special going on, excited to meet my oncologist, have given the short term disability forms to my primary care physician, have yet to fill them out myself. I know the information barrier I've put in place for work is breaking, and that it can't hold, but that I just have to hold on for a couple more weeks.
Saturday after colonoscopy. I'd told my boss the previous week, and HR earlier this one, so the strong separation I had between work and everything else was breaking down. I had promised myself that I could get one (1) Squishmellow friend per procedure so I was excited that I was going to get one today. This was going to be my first solo trip since before I got Covid-19 (and before this nightmare started) that I was looking forward to. It was a great day ❤️
"No I am an adult and me and my new friend Nessie are going home to watch monster movies together"
From the comments
James Petrosky: Things you wish you said after the situation is over.
James Petrosky: We are going to take T3s and watch monster movies, though. Obviously Chip and Thomasin will be there, too.
James Petrosky: I wasn't sure this was the right one in the store, but turning around and seeing her smiling face tells me it was.
James Petrosky: My deal with myself is that every major cancer milestone I get to add something silly and cute to my plush collection. Today it was almost a giant Bulbasaur, but Nessie was a lot softer
