Monday November 20, 2023
Look-Back
What took five full cycles last time took one this time. My white blood cell count is already at the point where we're discussing options. So far, the immune boosting shot isn't on the table, we're going to try adjusting chemotherapy dose instead and see how that works. This, and my nausea response, have driven home that even though I'm calling this cycle one again, it's really more like I restarted at cycle 17, with my tolerance already much, much lower than where I started originally.
The following was originally posted November 21, 2022
Cycle 5 Day 13
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.
Saturday November 26, 2022
Diary
Cycle 6, Day 4
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
Wednesday November 23, 2022
Diary
Cycle 6 Day 1
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.
Monday November 21, 2022
Diary
I reflected on this on November 21, 2023
Cycle 5 Day 13
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.