I’ve been trying to think of how to describe how chemo makes me feel. Mostly, when people ask, I say something like, “I’m just tired and nauseous.” And while that’s true, it’s not complete. It’s just what I say when I’m too tired to think of any other words. A more complete description would start with, “Everything feels more, bigger.”
Mostly my senses. Sounds are louder. All sounds. Which makes them annoying, and sometimes almost painful. Everything is brighter, and I feel like I’m squinting a lot to keep out the blaring light. My skin feels weird, and when I tried to clap at Miko’s end-of-the-year program, it hurt. My taste is off, and is both more intense and less pleasant. Same with smells. With these two in particular, it’s not like I taste the good things and smell the sweet smells more intensely. It’s more like the smells and tastes are more pronounced, and mostly gross. I go around saying, “Why does everything smell SO bad?” and am met with puzzled looks. All of this is very overwhelming and makes me irritable. I feel like I’m getting a glimpse into the life of someone on the Autism spectrum with sensory issues. Everything is overwhelming, and it’s all too much. One night I had the fun experience of feeling as if my senses were all mixed up; I heard the dryer spinning and became so dizzy I couldn’t walk straight.
And then there’s my brain, which is on a definite slow-down. I do things like mix up the plot lines of Game of Thrones and Merlin, a show Miko watches. They aren’t super similar. Or stop midway through a sentence because I can’t remember what I was saying. The other day, it literally took me hours of thinking that I felt like eating something bready to come up with…. toast. The confusion of my slow brain combined with the confusion of my overactive senses shortens my fuse, and makes me irritated at all people around me. Lucky them.
That leads to the mothering. The hardest part about chemo is the mothering. Not because I have a difficult child. I don’t. I have an incredible kid who makes me meals, good ones, and keeps herself busy with art projects when I am too sick to interact. But that’s the thing, the being too sick to interact. She only has one summer as a ten-year-old, and I hate to think of her spending it this way. Being patient with a sick mom, being understanding when she has to miss out an an activity because the other kid has a cold and I can’t chance it, having no immune system. And yet she does, with grace. But I see her face, when I’m short with her because she dares to act like a ten-year-old when I’m feeling especially crappy, or when plans change because I’m not able to go through with the originals. I see her disappointment when I can only make the last part of her school program. Don’t get me wrong, she has a lot of fun, too, thanks to all of the sweet others who step in. And to even more others who are conspiring to make the rest of her summer pretty fantastic. So maybe it’s more of a selfish thing that makes mothering with chemo hard. Maybe it’s not the changing of her 10-year-old summer that I’m lamenting. Maybe it’s that I only have one summer as a mother of a ten-year-old, and I feel like I’m watching it from the sidelines, only able to sometimes engage. Or worse yet, and this is hard to admit, but sometimes I feel so sick that I can barely get myself to care that I’m not engaging. And that, with the sensory overload and dull brain, makes me angry.