What are chemo "down days" like?

People always want to know the nasty details and I've been sparing of them. But, now I'll 'fess up.

It feels just like you've been poisoned, I guess. Starting on Friday and lasting about 5 days I feel very weak and shaky. My eyeballs seem to jump around and when I close my eyes they are still jumping around. If I do much work (typing, collecting dog poop from the frozen backyard) I just feel like sitting down for a while. My mind doesn't seem to work too well and doesn't want to do anything very difficult. I find myself thinking "Oh well, I'll deal with that later. I'll fix that later. I'll find that later."

On Saturday, which is the worst day if the chemo was on Wednesday (which seems to be my schedule for the last 3), I wake up around the usual time, about 7:30am, after having woken up about 7 times in the night to go to the bathroom. (They encourage you to drink as much water as possible to help flush out the chemo drugs as fast as possible.) I get up, go to the bathroom once again and wander into the kitchen. Drink more water because my mouth tastes like old metal and I'm thirsty and my stomach hurts. Think about eating. Not very interested but I eat a bit of bagel to get some carb in my stomach to help the acid and hurt.

Go back to bed because I can't think of anything I have the interest or strength to do and the girls aren't up yet anyway (you remember teenagers and weekends...).

Wake up again about 10:30am. The girls are now up so I get up and we have breakfast. I can eat; I don't have any nausea. The food doesn't taste good particularly, but eating makes my stomach feel better. We hang out about an hour -- once they go upstairs to do whatever they do up there (probably go online or play a video game or read), I go back to bed again. Basically my whole day is sleeping, getting up to pee, and the occasional hour awake. I go back to bed for "the night" about 8pm. It's difficult to sleep because of all the sleep I've gotten and all the peeing. But I still sleep most of the night.

The Friday before and the Sunday, Monday & Tues after are not quite as bad. Still feel weak and some shaky, stomach still hurts. My mouth still tastes like old metal. But I can do the things I need to do -- go to work and type, think, decide. Drive the girls around. Warm up food and eat with the girls. But I go to bed early and usually take an afternoon nap.

There. Not as bad as I thought it might be. Probably not as bad as you feared. My friend who has done chemo and I call it "feeling puny." Not really terrible, just unable to DO anything.

I have wondered whether having my worst day be Saturday is "real" or if it is the day that is convenient to "take a day off." Some people have other days that are worst, between 1 and 5 days after chemo. I do think it helps to have "scheduled" this time for myself, when I don't plan to do anything, or go anywhere and can just sleep, watch TV, read, etc. Maybe I'll continue to schedule these down days every 3 weeks, even after I stop chemo! I suppose, in some ways, we all do that, whether we are conscious of it or not.