Gang, I hadn't realized how bad my fatigue had gotten until yesterday. In the full summer heat I used to be able to see twice as many exhibits as I did yesterday. It wasn't cold, but I had a chill much of the day. The immediate chemotherapy side effects aren't too bad (but I think they're getting worse), but these slower acting side effects that build cycle after cycle are really draining. Fortunately, the seasons are changing and its getting easier to do things.
From the comments
James Petrosky: Bonus fact no one wanted to know! Pretty much the only hair I have left on my whole body is on top of my head or in my dramatically depleted eyebrows. This fact occupies a lot of my brain time but never comes up and this feels like the place to share.
James Petrosky: Yes this includes eyelashes. Strongly recommend not removing your eyelashes, I get so much more stuff in my eyes now
James Petrosky: Another bonus fact! I adore sea horses. They're one of my favourite animals (most of my favourites are what I like to call "fat rounds" - beavers, wombats, capybara, not long delicate fishies) and I was super happy to be reminded of this statue
Yesterday I spoke with the surgical oncology team. The CT scan looks great, we're officially moving on to the surgical stage of treatment. While I'm waiting for a date, I'll keep doing chemotherapy (modified, we're discontinuing one of the drugs for now), I'm very excited for this development. For now, I'll have a lot of paperwork to do and a lot of anxiety to cope with, and there's a chance I'll be on chemotherapy longer at this stage than during the first stage, depending on how scheduling goes. But it's a new day, and I'm more sure now than before that the light at the end of the tunnel isn't an oncoming train.
From the comments
James Petrosky: I'm going to note again that this first surgery, a laparoscopy, is entirely to help decide if the full surgery is an option for me. If the cancer is growing in vital blood vessels or nerve clusters then that's the end for surgery. Making it this far is fantastic news, but the real hurdle is a good result on this first operation.
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.
Cycles are two weeks. Something isn't right. And that thing is my immune system. It's too weak to safely take another round of chemo right now, so my oncologist gave me a week off. Today is the longest I've been off it since September 15th.
This isn't entirely unprecedented, after cycle 6 I needed to get a shot to boost my neutrophil count. But it is frustrating, this was to be the last of my second round of chemo, I was supposed to get a CT scan to learn how the treatment has been going (rescheduled until the following week).
From the comments
James Petrosky: I'm doing well, taking extra precautions and keeping to myself. And honestly a bit of a break is nice, chemotherapy is no picnic.
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.
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 ❤️
James Petrosky: I love all the reacts, but I'm very excited. I'm also upset at Zucc for taking the good backgrounds away and durining my character into a weird stress ball texture.
