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Wednesday, December 31, 2014

Goodbye to the year of my experiments

On the eve of 2014, I decided, based on how things were shaping up, that it would be The Year of My Experiments. Namely because of the clinical trial, and because of this new type of reconstruction I felt strongly about trying, called BRAVA.

I was squeezed into the trial in the last minutes of 2013. I think I was the last person enrolled at Sibley. The trial is ongoing, as you know, and shaping up to be pretty groundbreaking. I'm proud to be a part of it.

The reconstruction technique, BRAVA, which entails a space-aged suction bra and several fat grafting surgeries, while fascinating, is something I decided not to pursue. My main reasoning for considering it were whispers I heard about being able to regain sensation in BRAVA boobs. For those who don't know, mastectomied chests are completely numb, something that's troubling not mentioned in surgical consults. But I couldn't receive real confirmation of regained sensation. And the suction bra is something you need to wear 8 - 12 hours a day, sometimes for 2 years. And it's enormous. You can't go out in it. And after two years of being sick and housebound, I shied away from yet another thing to keep me on the couch. (Believe me, I spent plenty of time on the couch anyway. Hello, Gilmore Girls on Netflix?!)

There were other experiments that I didn't expect. I tried out standing up for myself in ways I never have. Saying to people "You don't get to treat me that way," and generally calling them on their shit. And, to my amazement, fire didn't rain from the sky.

I made a move away from the job I've had for ten years, my entire adult life. It's a nice job, and I liked it, but it wasn't enough anymore. So I applied for lots of others, and got one that I realize now is so perfect, so right. I told people that I love that I can't stay with them anymore. And I wasn't swallowed up into the earth.

And I stepped outside my cancer shell, tried on some things I used to do, and found that I wasn't all gone, after all. I finished my novel. I rode a horse.

There is still so, so much to do.

Monday, December 22, 2014

There was some beauty

Six beautiful things from 2014:

1. A Second Embrace, With Hearts and Eyes Open, by Mary Elizabeth Williams

"Nobody writes songs about sitting on the edge of the tub while a man applies topical antibiotics to your oozing skin graft. There are no poetic odes to women with gaping scars, no sonnets to men who may be wearing the same shirt for the third day in a row."

2. Psychylustro, by Katharina Grosse

3. The Electric Body, by Matthew Seigel 
"Hello, hidden pain. So strange
how you resemble my old face.
Won’t you come inside?"

4. Strandbeests came to Miami

5. Woman Says Goodbye to Beloved Horse from Hospital Bed Hours Before She Dies

And finally, 6:

Thursday, December 18, 2014

Why the "War on Cancer" doesn't work

We Americans like declaring war on nouns –  drugs, terror, and of course, cancer. (I’d like to declare one on flagrant misuse of the apostrophe, but that’s just me.)


And a thousand cancer patients said, "No shit."

Aside from things I've said before about the problematic nature of the word survivor, and the idea of someone "winning" against their disease,  this study unveiled a new issue: they found that patients in the “war” group were less likely to engage in preventative behaviors, and general wellness. Because painting cancer as an external enemy ("An unstoppable rebel force," to quote Meet the Parents) rather than a part of our bodies, changes to way we approach it

This is interesting, and walks this really fine line. I am anti-patient blaming: it’s not the patient’s fault for getting sick. This might seem obvious, but there are real stigmas with certain diseases. For instance, with lung cancer there's an idea floating around that patients who had smoked deserve whatever cancer they get. That they don’t have a right to have feelings of anger or sadness, because they made their own bed. (And the even more intensely stigmatized disease, is of course, HIV/AIDS. But let’s stick to cancer, the devil I know.)

The truth is that cancer is part of the body. My cancer cells were made by me. It is not my fault that it happened; it was an accident of cellular division. But it came from within me. And that’s  hard to wrap my head around. Why would my body try to destroy itself? What the fuck did I ever do to you, body? (Wait, don’t answer that.)

The cancer-as-enemy idea correlates quite neatly, for me, to that of demonic possession. The idea of "The devil made me do it." Casting blame for wrongness, whether for a crime or a socially stigmatized thought or obsession, onto an outside actor can be attractive and comforting.

I’ll use an example from my own life – intrusive and obsessive thoughts. All of us have these thoughts one time or another – something horrible that pops into our heads for a second, seemingly out of nowhere. Many people are able to dismiss these for what they are – odd blips of the brain. But others, like me, can become obsessed with them. Why did I think of that? Does it mean that I am evil/violent/a criminal? This thinking becomes circular – fears that you are evil tend to lead to strange “thought experiements” to test your evilness, and those thoughts reinforce the idea that you are evil. The thought pattern grows out of control....kind of like cancer cells.

It’s attractive, for someone trapped in this circular thinking, to be able to blame something else, like the devil, for implanting those bad thoughts. 

In the same vein, it is common for people to dismiss actual criminals as simply evil, inhuman, rather than admit that within all of us dwells the potential for carnage and destruction, and that the wrong circumstances will unleash it. (see Milgram, et al.)

Carnage and destruction are possible not just externally, but internally. Everyone reading this has a cancer cell of their own making floating around right now. More likely than not, the immune system will find it and neutralize it.

But sometimes the immune system misses, and you've been exposed to the right environmental toxins, and you have the right gene mutation. And boom. The damaged cell divides and divides, growing its tumory self all up in your breast (or prostate, or kidney, lung, skin, brain, liver...).

What if, instead of fighting cancer, we sent love to it? Imagined healing the damaged cells, instead of annihilating them? They are just broken pieces of ourselves, after all.

The other thing about war is that many innocents die. And enough, please.

Thursday, December 11, 2014

Wild and Precious

Saw Wild tonight. Run, don't walk, people. Or actually, you probably should walk. But fast.

I read the book of course, and as some of you know, took a writing workshop with the one and only Cheryl Strayed over the summer.

The film is something else altogether now. It's the first time I've seen an adaptation as a companion piece to a book, rather than retelling. The gorgeous editing, the visual and auditory links between scenes actually enhanced my understanding of the book. The book and the film hold hands and sing.

Things have been happening, dear reader, to explain for my recent absence. I have a new job: community manager at this fine place. I'm leaving the one I held for ten years; my entire adulthood. I recently finished a draft of my novel (like, last night. Matt's reading it next to me on the couch as I type). 

When I found out I had cancer, my world became small. Cell sized. I could live and die by a single one. And slowly now, I'm fanning out again, world opening up like an aperture. Letting it all in. 

There was a time when I proclaimed that I simply refused to die from this. Something I have no control over. But I have control over how I live. And I refuse to live small.

So that's all for the moment. As things settle down I will say all I have been wanting to say to you. I will leave you with this:

Tell me what is it you plan to do with your one wild and precious life?

Mary Oliver
& Cheryl Strayed