It's been a really long time since I've posted. Since January, I think. Since then I had my first "progression"-- the meds I was on stopped working, and the cancer spread to my lumbar spine, pelvis, and tailbone. When the oncologist told us, she seemed devastated; she had been hoping that because of the particulars of my disease, I might be an "outlier" and live a long time. But failing on a treatment after only a year doesn't bode well. The original tumor, she noted, was tiny but nasty, and she implied strongly that my first oncologist should have given me chemo back in 2013. Hearing this was in some ways worse that hearing the news the first time: there was no adrenaline rush, just sadness. And the renewed possibility that something might have been done to stop it has only added to my feelings of self-blame. But the onco recommended against chemo, and said it would only lower my risk by a few percentage points. I am constantly reminding myself (and asking Matthew to remind me) that this isn't my fault.
My new protocol is part of a trial, which allows me to keep getting my insurance to pay for Ibrance; otherwise I'd have to pay for it myself, at $13,000-$20,000 per month. The other drug is a different estrogen suppressor, Faslodex, which they inject into my ass every two weeks. Side effects are the usual, just a little worse than before: achy joints and more pain, and fatigue I just can't seem to escape. If I owe you an email or letter, please know that I will eventually get there-- it's just hard when you sleep 12 or more hours a day. Being tired all the time also makes it hard to write, and even though I feel more determined than ever to write about this experience I can't seem to get down to it. But suddenly this afternoon I found myself writing a poem, which is really, really odd for me, because I hate poems. I've hated poems since about fifth grade. But somehow that's what came out. . . maybe it will help me get out of bed and actually do some work. Anyway, here it is. Please don't judge it too harshly, because as I mentioned, I don't like poems and didn't really intend to write one.
Fuck I hate poetry
A high school classmate once opined,
“All prose is failed poetry.”
What a douchebag.
She later became a famous poetess.
That’s poetry for you.
Sure, there are some poems that shine,
Some poets who seem to know your heart,
Who—with slight of hand— and
Entirely personal punctuation—
Open rooms in your mind you never knew existed.
But mostly it is self-indulgent solipsistic crap.
Which is why I want to punch myself in the head this very moment
Because here I am writing a poem.
There’s something about brevity
Something I can’t quite say
But that thrills on the tip of my tongue
Maybe I’m here because this is more like a body
Closer to the insecurities and undulations of flesh
Where the only logic is dream logic
Or the non-logic of blood and bone and fascia
The perversity of organs, swimming in blood
Stewing in sewage
Coming apart at the seams
My brother Will had a talismanic teddy bear
Named Bear (because Will was only small at the time)
Bear went where Will went where Will went to
Even to the hospital where Bear stayed in his bed while Will was vivisected
Pulled apart at the seams
Sternum cracked open
Idiotic heart opened and closed
Valves blinking like eyes
Now we share a cartography of sutures and punctures and catheters
Remains from invasions and masked marauders
But my body continues to tear itself apart
Eating its own shit
Throwing the baby out with the bathwater
So swiftly swallowing everything good and everything bad
I don’t know how to stop it or slow it down
It won’t listen to me anyway
And I can’t even find a way to write it to constrain it in words
To name its tendrils and insatiable gapping mouths
So I’m left with this
Short lines and bursts of syllables
In my mouth and out of my mouth
Fucking poetry for god’s sake