Here it comes again

My extreme anxiety is cyclical, apparently, and I’ve just discovered what triggers it: my husband’s chemo.

He starts another round tomorrow and I’m already feeling that familiar tightness in my chest.

The interesting thing is that I didn’t experience this when he was on chemo before; it’s only since the cancer returned. I wonder if he experiences the same kind of anxiety.

I keep telling myself that I shouldn’t be feeling this way because I’m not even the one on chemo. But feelings tend to ignore commands like “shouldn’t.”

I don’t really have any idea about how to get through this with more peace and calmness. I won’t write out all the reasons that I feel anxious because it wouldn’t help me to write it and I’m sure that nobody reading it really cares, anyway. Or if they do care, they’re just as helpless and powerless over this process as I am.

On another note, I finally got my long-awaited results of my genetic testing for leukodystrophy, and the results were remarkably non-definitive. I shared them with a friend who’s a genetic counselor and she should be able to offer me more insight tomorrow, if there’s any to be had.

Long story short: I tested positive for four genes that are associated with leukodystrophy, so that is indeed definitely what I have. I guess it would have been much more frustrating if I tested negative.

Two of the four genetic changes were listed as benign. With the other two, it was unknown how they will affect me. One of the unknown ones was a gene associated with Krabbe disease, which is always fatal in children but adults diagnosed with it tend to have longer lifespans. Whether or not my lifespan will be shortened is unknown, as is how it will affect me in the future.

Amusingly (gotta look on the bright side where I can, right?), cats can also get Krabbe disease, possibly lending further support to my husband’s joking that I’m actually part cat, especially because I’m extremely prone to spontaneous napping.

The other gene with an unknown outcome is one for Charcot-Marie-Tooth disease. The symptoms of that also fit me, but that’s not my only diagnosis. I apparently have some weird hybrid disease.

But basically, I feel like the genetic testing was a big answer of nothing. I hoped it would find something more definitive, like a very specific diagnosis that diagnosed me, but I’m also not totally surprised that it didn’t.

J says that I have a disease that will bear my name someday, when science advances enough to discover it. I’m not hopeful that day will ever come because so few people are studying any of the leukodystrophies. I’m “lucky,” I guess, that I didn’t get one of the variants that would have killed me in childhood. But because it didn’t strike me until I was an adult, I’m still a mystery, and one that is likely to remain unsolved.

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