What's it like to be on chemo? I asked him.
A: I imagine a lot of weird little things, like I'll be asleep and think I have to sleep in this particular fold in the sheet or in a very particular spot on the bed.
There are these little things zipping and racing around in the dark. They're not bad, they're good. They just zip around.
K: Right. One of the side effects of one of drugs is hallucinations. Do you see them now? In the light?
A: Well yeah. If I look down or out the corners of my eyes I can see them. Oh man, my head. It doesn't ring, it's just fuzzy. It's like it's covered in lots and lots of blankets that I can see through. It's like being in a fish bowl.
K: What else makes this so hard for you?
A: The sleeping interrupts. I'll be having a thought and like then I'm asleep. I can't focus for very long. Well, you know, I can't read or watch a movie.
K: How does your body feel?
A: Oh God, my body. (He groans with a smile.) Heavy. It feels heavy, draggy, doesn't want to move. It's like it doesn't know what to do. It's like everything is passing me by. I can't do anything about it. Not in a bad way but it's just flying past.
Getting dressed...I have to think about for a while before I can do it. Oh man. I have to think about the act of sitting up. Like right now I can't think about it cause I'd just fall asleep. I can't, like, I can't focus.
K: Do you like it when the kids come in here?
A: I love it when anyone comes in becuase its a distraction.
K: A distraction from what?
A: Just this fog. This fog that I'm in. Oh man.
K: What?
A: All I want to do is to lounge here with you and talk and it feels like I can't do that.
There is a pause. I don't respond. His last words are said with his eyes closed. 10 seconds later, he is alseep again.
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Helping Hands Tip
Do their laundry on a specific day, once a week. Fold and put it away too!
