I haven’t written here because I think of this as the place I write about cancer, and I haven’t really had space or time to think about cancer. The “third day” did hit after the first round of chemo, and it was rough. I moaned and walked around our house like a broken person and it felt almost unbearable for a couple days. Then, like a Christmas miracle, the chemo-induced lethargy, aches and pains lifted just in time for Lucas’s surgery. 

Since then, we have been so focused on Lucas’s care that cancer has receded to far-back-burner. Which might sound like a good thing, but I miss being able to think about anything other than how (and if) Lucas will recover. Right now he has strange pains that seem to puzzle even his surgeon. My wonderfully active prefrontal cortex (the part of the brain that can go foggy with chemo) says that the weird pain is probably just part of his healing process. My reptilian brain, the part alert for danger, fears we traded in one set of (known) pains for a new set of (unknown = scarier) pains. I haven’t been able to look up from entertaining him, caring for him, or worrying about the future of caring for him. And now I have chemo again tomorrow.

I hate how scared I can get for our future. I treasure the time I spend with Lucas, whether it is caring for him through tending to his body or playing games or reading books together. Lucas is an  amazing human. I feel so lucky to be so close to him. But also, his care is so insular and specific, and therefore, when he needs more care, I feel (or fear) ourselves becoming more and more isolated. Cancer still feels easy in comparison. I now know that chemo knocks me down Friday-Sunday after my drip. That feels easy. (I mean, easy because Burke is so on top of Lucas’s care, all the time, but especially now. Easy because so many people are helping keep Ida entertained when we can’t. I love how big she is feeling our community of support right now.)

I listened to a great podcast with Sarah Hendren, a designer and mom to a grown son with Downs Syndrome. She beautifully articulates so much about disability and our collective choices, particularly design choices that help or hinder access. But the thing that she said that really struck me was this: We talk about “interdependence” and “mutual aid,” really focusing on the ways that we give to each other in exchange. But if we’re honest, sometimes we are just dependent. One person, dependent on another human for care. And this scares the shit out of most of us (maybe particularly non-disabled people). What if we admitted that through injury, illness or age, all of our bodies will depend on others at some time? It is scary because we know that people and systems can let us down. It is overwhleming because of the weight of it — we need each other so desperately sometimes. I am feeling the weight of this right now. Lucas’s deep dependence on us and his nurses. Lucas’s and my dependence on hospitals, doctors, nurses and medical assistants right now. It feels vulnerable to be so dependent. And it feels heavy, to be so utterly depended upon.

My hair feels like small news in comparison, but since it marks such a clear initiation into cancer-journey-land, here is that update. It started falling out last week. I had already been dreaming of it falling out in weird, almost deranged dreams where I pull out hair by the handful. So when Burke shave my head on Tuesday, I was relieved to have it done. I have mixed feelings about how it looks and feels — it isn’t totally unfamiliar, since I also shaved my head – then for fun/liberation/feminism/non-attachment – seventeen years ago, back when we lived in NYC. In fact, Burke shaved it for me then, too. I hope it makes me look more punk rock than cancer-sufferer…we’ll see. It is still falling out, but now my arm hair, leg hair, eye lashes and head hair is all about the same length, so I can’t tell which hairs litter the bottom of the bathtub each time I shower.