This is the face of someone with a surgical date in ten days. I'm scheduled for laparoscopic surgery next Friday, the 28th. This also means that my chemotherapy appointment for tomorrow is cancled, and Cycle 16 might last around a month.
The point of this procedure is to determine if I'm a candidate for the full HIPEC surgery. If I make it by this hurdle, I should get a surgical date sometime this summer. If I don't, depending on the specific reason, that's it. No HIPEC. And HIPEC is the only way out.
Next up is a pre op appointment Thursday.
But, for now, I'm not going to think too much about all that. I bought some pastrami, good buns and my favourite sourkraut (and a case of Coke) to celebrate tonight. Maybe I'll even watch Cats, it's been over a year since I've seen it.
Gang, I'm so tired. Tired of counting cycles. Tired of the side effects. Tired of living in a sort of constant existential terror.
I took a walk to the beach, roughly 400m, and found myself lightly winded when I got there. Walking back was the same story. I've been doing some basic yardwork, collecting leaves that fell on the patio stones mainly, and after three hours of medium-light labour I'm so exhausted I need a nap. I've never been the most fit person, but even at the peak of my cancer pain on the late summer I was still able to work (medium-heavy labour) fifty hour weeks without wearing myself out. It's a lot to get used to. And to add further insult, my nose has been running constantly for the last month. It's a known side effect, but it's gross and frustrating.
For the sake of my mental health, I need surgical dates to look forward to. I'm hoping I hear something this week
From the comments
James Petrosky: Most of the time I'm pretty comfortable with my mortality, but the anxiety and depression and exhaustion have a way of eroding the peace I've made and found.
James Petrosky: My personal nurse has been a tremendous help, though
Today was sort of a comedy of errors. I had some bloodwork done for my lithium, and the technician took two tries to get it right. No big deal, it's never happened to me before, but it happens. My PICC line was clotted, which has happened twice before, but this time it couldn't be cleared by running saline. It was taken care of and works properly again (the blue thing holds my take home chemo, which couldn't happen if it wasn't working) but that means they needed to run a temporary IV for the hospital administered chemo. Friends, it took four tries. I left with two IV bandages on each arm. But I got my treatment, and that's what matters.
From the comments
James Petrosky: Bonus other bullshit I've been up to! The pinkish one is a long finished project, but the purple one is brand new this week. I'm very happy with it
James Petrosky: I also have an ashtray, which runs off batteries. Blue LEDs have a much higher voltage drop than red, so as the batteries run down the mix gets more and more red, and then dims in a really pleasing way. But that doesn't come out in a still photo.
I leave for my chemotherapy appointment in a couple hours. It's not going to be too bad, I'll feel like throwing up for three days (but probably won't because the medications are effective), I'll be unable to eat anything but yoghurt and white toast with jam (and I won't want to eat that past the halfway point), and I'll mostly be just awake enough to feel the time pass.
I've developed such a feeling of dread for this. It was easy to motivate myself when the memory of the cancer pain was still fresh. But it's been six months since I felt that pain, six months since all of my symptoms are the direct result of the treatment. I know I need to keep getting treatment, know that I'm in another phase, that things are moving, but I also know that this dread is spreading earlier and earlier into the cycle. I started feeling the anxiety and dread Sunday. It used to only start day of.
The cycles carry on, and they're exhausting.
From the comments
James Petrosky: It doesn't help that my appointment is later in the day than usual today. I just get to sit around, full of worry, burning through the dumb internet nonsense I'd normally enjoy while receiving treatment.
James Petrosky: I clean off my bed for maximum chemo comfort, so I made this adorable pile of cute friends
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.
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.
