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Saturday, March 28, 2015

Whose Cancer Is It Anyway?

What do you call the person who holds your hand during a cancer diagnosis? 
What do you call the fiancé who picks up your medication, the friend who makes your favorite meal, the sister who changes the dressings on your surgical incisions?
Traditionally, these people are called caregivers. An odd blend of nurse, parent, therapist, cook, workhorse, and peer, caregivers play an integral role in a patient’s recovery from cancer. A caregiver can improve medication adherence, nutrition, quality of life, and more.
As part of the upcoming Ken Burns series Cancer: The Emperor of All Maladies (trailer below), PBS has released a number of short videos on One video features actor Ken Jeong (of The Hangover fame) speaking about his experience caring for his wife, Tran, during her treatment for breast cancer.
Read the rest here.

Friday, March 6, 2015

YSC Summit

I'm here in Houston for Young Survival Coalition's annual conference! It's going to be three days of programming dedicated to breast cancer patients under 40.

Today I have State Leader training before the whole event kicks off. Here are some of the things I'm excited about this weekened:

SUSAN LOVE. I'm a fangirl.
- Tamales! There's a famous place near where I'm staying
- Being in a room with 500 plus people who share this crazy experience
- Awesome programming -- I'm looking forward to panels on genetic risk/family history of BC, relationships post-BC and more
- There's a funeral museum near the airport. Pit stop on the way back to Jerz.

...and I'm embarrassed to admit I'm also psyched to check out the custom nipple prosthetics booth.

Things I'm less excited about
- Soda in the breakfast buffet (wtf texas?)

Check back throughout the weekend for updates!

Tuesday, March 3, 2015

The Circle Game

Soo, turning 31 tomorrow. 

The other night, Matt asked me, "Did you think you'd have kids by now?"

I did.

If you'd asked me in 2013 if I thought I'd be done with reconstruction by now, I would have said yes. Last April I made a plan to devote the month to feeling better about my body, with the idea that at the end of 30 days I'd have some magical perspective shift.

Truthfully, I love a deadline. It lights the fire to accomplish things. Toward the end of grad school, I figured out how to exploit this tendency of mine -- a simple, reward based system for meeting short deadlines. Write ten pages by six pm? Get a massage. Hand in a paper a week early? Buy full priced thing from Anthropologie.

But deadlines only work when you're in control of what's happening. And, shocker, once you're out of school that's basically never.

I think I've been fooled or unknowingly influenced by the spate of stunt memoirs that were popular a few years ago. The writer puts him or herself in a situation ranging from the absurd (like The Year of Living Biblically) to the disciplined (Julie & Julia) to the hedonistic (Eat, Pray, Love). I've read and enjoyed many books like this. But they create a false timeline.

A life doesn't happen in a neat story's arc. It's something I've written about before. If you are masterful, you can chip a perfect and heartbreaking story out of many years (my number one example right now is Dog Years but there any many more). But setting out to do something for one year and have enough events for a plot and enough emotional growth for a story is probably actually impossible, and I wonder how many authors wind up fudging on the hugging and the learning. (Unlike Seinfeld, I am pro embrace, pro epiphany.) It may seem harmless, but it sets up some messed up expectations for life.

Setting emotional deadlines for yourself or other people is...not a good idea. Because emotional time is not linear. Getting farther in months or years from an inciting incident does not result in a neat diminishment of influence. The worst moments in my life are either so long ago I can barely feel them, or so present that their proximity drenches me in sweat. And back and forth, around and around.

And acceptance isn't stationary. And love isn't an ever fix'd mark. And moving on means more movement than most people know. Back and forth like waves, round and round like the Earth, in and out like breath. Parts of us are always moving.

Sunday, March 1, 2015

A Series of Moments

A day of appointments. Plastic surgeon in the morning. His waiting room is full of children under five, who he's previously stitched up in the ER.

"Em, you're the oldest person here," he calls on the way into a room.

(That never happens, by the way.)

When it's my turn, he looks at my skin and is pleased. I ask about one more fat graft, just to be sure, and he says yes. Then we talk tissue expanders, but because I'm me, I ask about a new still-in-clinical trial option. Patient controlled, that fills up by tiny puffs of CO2, rather than big gulps of saline. I will have over ten surgeries under my belt by the time I'm done, if I go this route. 

I ask him if I was being crazy. "I mean I know I'm crazy, generally. But am I crazy to try for implant again?"

"No," he says. So kindly. "Whatever decision you make is the right decision for right now. If this is what you want at 11 am on a Thursday, then it's right. Tomorrow you may change your mind, and that will be right. That will be right, but your earlier decision won't have been wrong."

I don't cry then but I cry now as I write it out.

We are just a series of moments.

Next I head downtown to the cancer center, where I go back to being the youngest by decades. I squeeze next to someone's oxygen tank. A woman named Sylvia is leaving the office and calls to the staff "See you next year!" and sounds happy, and sure. Insensitively sure, I think, considering where we are. 

The hospital's been redone, so now the lobby looks like some kind of too bright hotel. There are glittery, modern crystal chandeliers. It looks like it was decorated by someone with an orange tan and matching shoes. Despite the upgrades, the vending machines only have soda in them.

Lately my brain feel soft, like an unboiled egg. They can do that now -- unboil an egg. That means something important. If they could unboil, could that unscramble? Unbreak? An Italian doctor claims he is ready to perform full body transplants. Just let him know when you're ready.

The Hudson is full of ice floes this winter, and sometimes it feels like end times. Every once in a while I experience an event as if I were from the future, looking back for a catalyst for the end of the world. Not the catalyst, maybe, just the warning sign. The canary.

We think a lot about the end of the world, but it happens every day. When someone dies, it's the end of their world. Why is the end of all of us any more tragic than the end of one of us?

I see the psychiatrist about reducing my antidepressant, then my oncologist. She asks me how I am, and I say "Better than last time," and she smiles.

I ask her what she thought of the Oscars, and she says, "Now that's an interesting question." She says she'll write me a script to see The Theory of Everything (or was it The Imitation Game?), gives me a hug, and walks out the door. I hear her say "What's next?" to her PA before the door closes.