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.
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.
The CT scan results were good. Most importantly, to me, there were no new growths visible on it. And existing growths have all reduced in size compared to August. Bonus good news! There were anomalies on my lungs back in August. They remain and are unchanged, so they're source is likely not this cancer. Extra bonus good news - the immune shot worked, my numbers are as good as they've been since I started chemo, and I won't need one this week (so I won't have bone pain next week).
This all matches how I've been feeling, so the super extra added bonus is that I can trust how my body's feeling again. Which may be normal for many, but I spent at least nine months where I was increasingly unable to. It's a nice thing to have to get used to again.
The bone pain was excruciating, second worst continuous pain I've ever felt in my life, but fortunately only lasted two days. And I was able to be active, it really only hurt when I tried to rest. I did all my Decemberween projects during the worst of it. Don't recommend, but I know what to expect next time, so I'm not afraid or anxious about facing it again.
I'm pretty open about almost everything I'm going through. For reasons I cannot explain, sharing extremely private information about my diagnosis, prognosis, etc., is second nature to me. It would feel strange for me not to share. But the fact that I'm stuck inside my apartment several days a week because of diharea (colloquially, although much of the time medically) seems to embarrassing or crass to share. But I'm feeling spicy today, so here's the facts: bowl cancer, chemotherapy, and more than a few of the other medications I'm on really screw things up, I keep immodium on my person at all times (and have since the spring). I've made it work, but I've missed out on a lot of stuff I've wanted to do (nothing planned, but nice days for walls and such).
Humans will adjust to damn near anything.
From the comments
James Petrosky: In case you're wondering: it's as delightfully soft and squishy as it looks. 10/10 strong recommend
Today I visited the Midland hospital for a CT scan. Next week I should hear back about the results. This is how we're going to learn how well the treatment has been working.
I'm excited, and cautiously optimistic, for the results. I need to remind myself that I'm on a palliative chemotherapy cocktail. That the goal is quality of life, not to rid me of the cancer. The best case scenario, the scenario I hope for, is that existing tumors have shrunk and that no further spreading has occurred. None of that is guaranteed, but I feel good, physically and mentally, and I'm allowing myself the risk of disappointment on this.
I have an appointment with the surgical oncologists at Mt. Sinai in early January, they are much more experienced at interpreting this sort of scan than the medical oncology team in Barrie is, so even though I'll learn a lot next week, I'll still have to wait another month before I'll learn a fuller story.
Cycle six! That means, according to the very flexible plan that exists right now, I'm half done chemotherapy for this batch. There could be more right away, there could (hopefully) be surgery, there could be a break from all treatment. But whatever it is, whatever comes next, this is a milestone.
The neutrophil boosting shot was much, much less terrifying and unpleasant than I feared it would be. I think by the third one I might be able to administer it myself. So far I've only felt a touch of drowsiness for side effects, but I expect to wake up tomorrow in a fairly unpleasant state. Still, better than getting sick from otherwise harmless bacteria that live on all our skin.
Chemo was harder this time than last time, but still much, much easier than those first few. Thomasin stayed with me most the whole time, and we enjoyed some old noirs together. It wasn't the easiest week, mental health wise, but I'm still in a good position to stay the course, which is the important thing.
From the comments
James Petrosky: I'm not that red, my monitor was magenta when I took this photo and I didnt notice until just now
In September, this was the end point. Theoretically. I was pretty sure we were going to twelve from the start, but I'm still going to celebrate this milestone.
Also, the immune boosting drug costs 1700CAD for enough to cover a full course of chemo for me (six dosages). I have no idea how much it actually costs to produce, so I have no idea if that's fair. What I know isn't fair is that people under 65 are expected to have that money (or a drug plan) or just delay their lifesaving treatment. Either way, I got lucky, I have my dose, I'm set, all I have to deal with is a needle in the belly. Which honestly sounds like a nightmare.
From the comments
James Petrosky: Me posing with my "baby bottle" take home chemotherapy. It's the bad one, the one that makes me most sick, the one that makes my mouth taste slightly terrible as long as I have it. But it gives me more good days to spend with the people that matter, doing the things I love, and petting the softest/biteiest cat I know, so it's worth it.
Today I found out that my immune numbers had finally fallen past the point where something has to be done. I had the option to delay my treatment a week and allow it to recover, or start another drug that's designed to do the same.
I chose the drug. There are too many appointments, especially my CT scan Monday, that would be either too much effort to reschedule, or would not be able to be scheduled soon enough. I'm extremely unenthusiastic about a needle in the belly, but it's better than getting sick from the bacteria that naturally live on me all the time.
The drug is also the first time I'm going to have to pay for my treatment. Were I 65, OHIP would completely cover it. Because the whole system is designed for a specific sort of person getting treatment for cancer. My work plan covers it, so no one needs to worry about me in this regard, and without the CT scan so close I might have opted to wait an extra week, just to see what it would be like.
From the comments
James Petrosky: I've already been only visiting stores during off hours and have next to no in person social contact. I've been essentially acting like I was in this situation since September. The Covid-19, influenza and assorted childhood disease situation locally is more than a bit alarming, but I'm doing what I can to keep myself safe and there is no need for any worry on my behalf.
James Petrosky: Oh! Also, side effect of new drug is bone pain. Which is the least pleasant sounding combination of two words I've heard in a very long time.
Mica: I love when healthcare systems say you're too young to have the disease you have. 🙄 Like, thanks I'm cured
James Petrosky: A side effect of electing mostly old politicians I guess. More seriously, the whole system kind of assumes an older patient. And all I've seen are older.
