On Sunday, I got a call from my Dad on the Greyhound bus; he said my Mom had a question for me, and handed the phone to her. Mom was trying to ask me something, but she couldn’t get the words out, and the ones she managed were slurred, and eventually she got frustrated and handed the phone back to Dad. “Is Mom OK?” I asked, baffled, and he said he didn’t know, but she didn’t pass a stroke test. (She was apparently trying to ask me if I was coming out to the Cape this weekend; she was worried about leaving the house a mess as they were leaving for the hospital. This quality of hers A. calls “other-directedness”. Later, when she talked about having the mini-stroke, she described mostly feeling desperate to get the words out because she could see Dad getting upset and she wanted more than anything for him to not be.) As I cried on the bus, the thing that kept coming to mind was Buffy’s mom.
When they did an MRI to figure out the cause of the mini-stroke, they found something else: my mom’s cancer has spread to the lining of her brain. (Unrelated to the stroke, it turns out. It’s called an “incidental finding,” though I think if you started your explanation of it to someone with “incidentally,” they’d get mad.) This is called leptomeningeal metastasis, and one thing I read online (the oncologist told us not to google it, but what are you going to do, tell a fish not to swim?) described it as “growing like tree bark on the surface of the brain”. The oncologist also told us this brings her survival into the category of months. (“Months” is funny, it’s like when people say in listings that an apartment is “steps from the T”, it could mean literally any number of steps. I don’t think he meant to imply a wide range of numbers of months, though.) This does a lot to explain her debilitating headaches, the fact that she’s recently become nearly blind in one eye, and her increasing deafness. As it progresses worse stuff could happen. I’m still thinking a lot about Buffy’s mom.
Another thing I’ve been thinking about a lot this week is how awful hospitals are. I know everyone says that, it’s kind of self-evidently true, but it’s shocking how akin to torture a stay in the hospital is, even just as a visitor spending a lot of time there. I am pretty sure “incredibly loud beeping for long periods of time at random intervals” is against the Geneva convention, as is “waking someone up at random intervals whenever they fall asleep to poke them and ask them questions”. Like, that’s framed like a joke, but it’s not a joke. I wonder why there’s not more attention to these parts of the hospital experience because they surely impact health outcomes; I could feel seconds being shaved off my life every time a beeping alarm went ignored for 10-15 minutes at a time. I have a lot of love and respect for hospital staff and know they’re doing their best - understaffing and underpay are huge factors here - but I wish there was as much emphasis on the psychological dimensions of care as there are on infection control. The fact that a third of Americans die in short-term stay hospitals (two-thirds if you include nursing homes and long-term care facilities) seems deeply inhumane. Mom made a joke about us all going to Tahiti to live out the rest of her time, which seems much better.
At a lot of points during my Mom’s illness of the past four years, I’ve wished not quite for her illness to progress or for her to die, but for it to be over: the uncertainty, the stress, my Mom’s suffering from the side effects of her treatment and the pain of her illness. I say this feeling kind of like a monster, in hopes that someone will reassure me that I’m not, or that it will reassure someone else that they’re not. But now that it is maybe almost over I wish so fervently that it weren’t, that we had more time, even more uncertain stressful time. Another season of my Mom’s garden, for her to be around when I go to graduate school, for her to get plenty of time to get to know A. and see me happy. I know I’m getting a bit ahead of myself, but I can’t help it.
One of the most mind-boggling parts of this entire, intolerable experience is that it happens to nearly everyone. Unless you die before everyone else, in which case they go through it on your behalf. And in that sense, just empirically, it’s not intolerable at all, it’s widely tolerated. Universally tolerated. Not that there’s a choice, and not that there would be anything to give a shit about in life if it weren’t for suffering and death. Everyone I care about, the backbone of their identity was built in suffering, in the meaning created by fighting it and enduring it. In that sense it’s not something to lament too much, I guess. But, like, duh, it really hurts.
My mom is super super loved. The only time I started crying while the oncologist was talking to us was when my Mom mentioned - let me back up a little. I don’t know how to write very well so this is how I write. Okay, rewind. My parents were going to go to Paris on Friday. Sort of a dream trip for my mom, who hasn’t been since she was a teenager but has a lot of romantic feelings about it. They’re not going, of course. But Mom mentioned to the oncologist that her two best friends were setting up my parents’ house as a Parisian bistro for them. Which is when I started crying. My mom inspires that kind of thing in people, because she is so, so good. Through and through. Everyone notices. A waitress they had in Aruba went to the market and bought her special cancer-fighting herbs because she instantly loved my Mom and wanted her to be well. I don’t really believe in “energy” or anything but part of me believes that it’s love that has helped keep my mom going for so long and I know it’s love, hers and others’, that will keep the rest of us going too.