For those that aren't familiar with the "standard of care" for brain tumor treatment, it's 5 days of oral chemo pills followed by 23 days break. This 4 week cycle continues for at least 6 months. Some people continue it for years if it's working for them and their bodies tolerate it well. For me, I will probably end up with a "clean" scan at the end of the this month and then every 2 months (fingers crossed), so these 6 cycles will be it for me at least for a while. This particular cycle was about 2 times the dosage of the pills I took for 6 straight weeks during radiation. Next cycle it goes up by another 1/3rd and stays at that dosage for the remainder of the cycles, which are scheduled be done by April next year, barring any medical necessity to delay any cycles.
I was unsure of how I'd feel with these meds. During the radiation and chemo, it was unclear which treatment caused which side effects. It was obvious the severe headache and non-stop vomiting was due to the brain swelling from the radiation as that went away quickly with steroids. I had even planned to try to work a few hours a day during the first few days of the treatment, which was a mistake. I've learned from that already. I don't WANT to take time off for this, but I do need to take care of myself.
Luckily, the side effects for me haven't been intolerable, hard yes, but manageable. I take the pills as directed: no eating an hour before or 2 hours after, take the anti-nausea 30 minutes before, take the chemo directly before bed. If I can't get to sleep right away (which happened a few times), the side effects are more noticeable. I get quickly changing hot AND cold flashes, heartburn, headache, and nausea. I ended up just wandering around the house (sometimes writing blog posts under the influence of sleep medications) and playing useless games on our various electronic devices, before retiring to bed (either my own if we have company, or the basement twin bed we have for company when there isn't someone there already). If I can get to sleep within an hour, it's obviously a lot easier. And I've actually been sleeping for long stretches at a time!!
The daytime side effects aren't terrible either. The biggest one is fatigue. I've been taking at least one nap a day, sometimes two. I tend to feel refreshed for about 2-3 hours and then start dragging again. I limit how many stairs I do because those seem particularly hard. I sit around a lot and can't really play with the kids, just cuddles and reading books. And actually, I seem to get winded reading aloud long books which a bummer. I have noticed that by about 22-23 hours after taking the last pill, I start to get my strength back and can do stairs at a normal pace again. That gives me hope that it won't be lingering effects every month so I can get back to my relative "normal" pretty quickly.
I go between being really hot and really cold all day long, although it seems to lean more towards cold. I've been wearing sweats, a thick hoodie, and a winter hat most days. It doesn't help that it's gotten pretty cold here lately, although I wouldn't really know since I haven't been outside in 48 hours!
Luckily, I haven't had nausea (unless I can't go to sleep right away). I have only had to take the anti-nausea right before the pill at night instead of every 8 hours like I could be and some people do. My appetite is not as good, but that's actually probably a good thing since it was high on the steroid anyway. I don't crave any foods and if you ask me what I want, I probably wouldn't be able to make up my mind. But if you put something in front of me, I'll eat it and it tastes good to me.
Speaking of steroid, I get to step down to a slightly lower dose this week too. Woohoo! I get my blood work checked Wednesday to see how my body is tolerating the chemo. And we have a weaning schedule for the steroid that will have me off it completely by Christmas.
Two of the three kids are sick so I'm expecting that to hit me later this week. Hopefully my white blood cell count will be holding steady so it won't be too bad.
There's a lot to be thankful for this week, too. Support army is still being amazing. We have a fridge FULL of food from kind friends and family. We are stocked for meals for the whole week, which is awesome cause usually Sunday is my batch cooking day for the week. My mom came for the weekend last minute and has been extremely helpful. She's unavailable the next two cycles though so we'll need to ask for help from other sources in terms of helping Charles care for the kids.
We have some nice folks who have offered to watch them for us on Tuesday nights so we both attend our respective support groups ("young adults with cancer" and "cancer caregivers"). They may not be in bed by the time we get home (45 minutes after their normal bedtimes) but that's not a big deal once a week. If anyone knows of some high school-ish aged girls (or anyone really) who want to come play with them Tuesday evenings, we'd be grateful :) The support groups offer so much emotionally and it's so worth it to go.
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