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.
Back in August, after I'd been diagnosed but before I'd started treatment, I genuinely didn't know if I'd see the new year. Now, as December draws to a close, I feel as good as I have for the whole of 2022. It's been a rough year, but I'm forgetting all that. 2023 has a lot for me to look forward to, and that is what I'm focusing on.
Some things change over a year, others don't
From the comments
James Petrosky: I put a lot of effort into painting that didn't come through as well
James Petrosky: My resolutions: to keep on as best I can and to spend time with the people and animals who are important to me.
This includes everyone reading this, digitally.
I'm happy to report I can still physically cope with long trips. The weather was pretty rough for the first leg, but it wasn't too physically or mentally taxing and I was able to finally make the trip home.
This is the most I'll I've felt in a number of cycles. Hopefully it's nothing rest won't solve, the reschedule really threw me off. I needed extra nausea medication at the chemo suite, which is a new one for me.
I'll have my take home baby bottle until Friday morning, which forces my Decemberween travel date to Saturday. Saturday, we are expecting a major winter storm. Here's hoping that the luck I'm not feeling with the chemo holds on the weather, but I'm not holding my breath.
Its been a happily quiet few days, since I got to return back to my apartment. But that cannot last. There's a winter storm expected tomorrow, which doesn't impact someone who stays home a whole lot, but Friday I have an intake appointment with a palliative care doctor that I don't want to miss or have to reschedule. And then four appointments next week (pre-chemo oncologist appointment, symptom management, chemo, chemo disconnect), which is a lot of hospital trips. Being terminally ill is practically a full time job.
This once again sounds more defeatist and depressing than I mean it to. I'm living my best life, doing hobbies, playing games, taking outings to enjoy seasonal lighting, spending quality time with my cat. Decades of mental illness, and coping with mental illness, have given me a good base for coping with the situation.
Today was the day I finally saw someone around my age in one of the chemo chairs. He was accompanied by another young man, around the same age. A brother? Friend? Lover? I'll never know. I hope they do well, but I know from experience that doing well is relative. It made me sad, but affected me a lot less than I thought it would.
By chance, I listened to a podcast episode about the science of death and dying while I was at the cancer centre. Friends, don't listen to podcasts about death and dying while in a hospital. It's not great for your anxiety levels, especially when you've got other anxiety inducing stuff going on, and especially especially when you're walking into a housing nightmare when you get home.
Speaking of housing nightmare, I'm spending my chemo recovery period in my partner's spare room. Thomasin is being introduced to her cat, and it's all just a stressful mess. Not at all what you need when you're recovering from, and receiving, chemotherapy.
Perfectly centred in the chemo centre waiting room
Chemotherapy always leaves me a bit flushed looking.
Hanging with Gengar in a strange room. Thomasin is hiding in her carrier.
