Last September, when I started chemo, I also started taking a picture of myself every week. I was originally going to do this for the 12 weeks of Taxol. My Herceptin treatment (not technically chemo, but chemo-ish) was to last one year, so when Taxol ended I decided to keep going, and chronicle the full 52 weeks -- September 21, 2012 to September 21, 2013. That might actually be 53 weeks. Whatever. I went 21 to 21.
It's odd to look at this. I normally don't like looking at photos of myself. Um, particularly when I look like shit. But I feel, I don't know, separate from this person somehow, even though the last photos are from just a few days ago. I feel like the girl in the photos made it through pretty unscathed, though the look on her face sometimes makes me sad. A lot of people had it a lot worse. (I sort of hate it when other people say that to me, that "it could be worse," thing. I know they're trying to be comforting. But you know what? It could always be worse. My prognosis could be worse. I could have had to do harsher chemo. I could be going bankrupt. My dog could have run away. So yes, it could always be worse. But shit could be a lot better, too.)
I'm still not completely sure why I took these photos. At first it had to do with documenting the hair saga. But it wound up becoming about something else, too. The photos became hash marks scratched on the wall, marking time spent inhabiting the world of this disease. Every time I set up the tripod was another week down. Or was it another week lost?
Since coming up on my chemo-versary last week, I've been reflecting on the experience. Most of my thoughts are of the "What the fuck?!' variety. As in, what the fuck, I went to work? What the fuck, I rode the subway? What the fuck, I didn't demand breakfast in bed and carpet of rose petals?!?
I stayed pretty normal throughout chemo. I clung to normal. So I rode the PATH and subway (even home from chemo sometimes... Yeesh). I went out, I wore perfume. I worked on a fashion shoot, despite my dip into the world of unisex clothing. I didn't buy a particular pair of shoes that were too expensive, even though I had the world's best excuse. I kept on doing all that old Emily stuff, so that I didn't die along with my cancer cells (and hair follicles).
The treatment that kills your cancer can also kill you. Because cancer is not a bacteria or a fungus. It is born of us. So any assault on a tumor is also an assault on the body as a whole. Parts of you are dead or dying all the time.
So there's an undead thing going on. A chemozombie. You're pumped full of poison. You should probably be dead, but you're walking around. Your brain's fried, so you're about as dumb as a real zombie. Your joints are stiff from chemopause and taxol and herceptin, so you kind of walk like this:
Hook 'em up to IV stands and these guys can be seen in infusion suites across the nation.
I went back to yoga tonight for the first time in months. Restorative is different from regular yoga because it's very slow, and designed for people with injuries. We do only 5 or so poses in two hours, and there are loads of props to make sure nothing gets injured.
As I have posted about before, it's always an emotional rollercoaster. Being along with yourself, with your body, is a pretty big deal. Certain stretches can make you feel extremes of emotion. And the teacher is wonderful at discussing the philosophy.
Tonight she talked about what she likes most about restorative. She said, roughly, that she liked the act of setting up the props as a symbol for setting up a place to heal. You get into the poses, and you don't have to be actively engaging all the time. The props help you in that way. The point of restorative, she says, is to be able to receive. Being open to receive what others, or the universe, offers you for healing.
This is the prayer we say at the end:
May the entire universe be filled with peace and joy, love and light.
May the light of truth overcome all darkness. Victory to that light.
As we pull around to the fall, to when I started chemo and started blogging, I have been thinking a lot about the story of this. The arc of it. Life doesn't occur in the neat arc format you learn in fiction class -- a steady plodding of desires and obstacles, leading to a crisis point, and finally softly landing in a denouement. In fact, this year has felt more like a series of crisis points, one after the other, with no free moments for taking stock.
The pink things have started appearing in the windows of pharmacies and grocery stores already. Pink arrives just after back-to-school is marked down, and as orange and black begin to haunt the aisles. It's a peculiar brand of insult to be hit up for cash by Komen as you buy cream to rub on your mastectomy scars. Because I'm over a year out from diagnosis, and this isn't close to over. The narrative they promise, the arbiters of pink, is one of strength and triumph. Cancer is a purifying fire, they tell you, and when we emerge (and we all do emerge) we are better, stronger, faster than before. We run races to prove it. We raise cash. We look pretty.
That's the story they tell, and perhaps it's to get you to buy more pink bags of chips or whatever the fuck. Or perhaps it's because the true story is just too sad and too scary, to gruesome, to stomach.
The truth is not that "We're all going to be okay!" as someone said in my support group once. The truth is not those sanitized sunny smiling women in the Komen/Estee Lauder/Revlon ads. You know the ones...the thought bubble above their heads practically reads, "I've got a life-threatening illness -- and doesn't it make my skin glow!"
The truth is that this fire destroys more than it cleanses, and rising from the ash is just for pheonixes and Daenerys Targaryen. The life lesson you learn isn't "Don't sweat the small stuff!" or "Don't move my cheese!" or whatever. It's "Don't get fucking cancer!"
So what's my arc here? Impossible to say. An arc sort of implies an end, doesn't it? And this isn't over, and it won't be over for a very long time. Maybe not ever, until I die. You don't ever get to say you're cured of this disease. You're considered cured if you live your full expected lifespan, and die from something unrelated to cancer or it's treatment.
Ugh, I'm sorry, dear reader. I know this is a downer. It just makes me so angry that the company that makes Tamoxifen also makes carcinogenic pesticides (and the list goes on and on). And instead of screaming about it and demanding that they stop poisoning us, we're expected to wear pink and jog and talk about bravery. Because we're girls, I guess. And that's what we're supposed to do.