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Friday, January 16, 2015

Us

"Emily, there's something genetic going on here, we just don't know what it is." Said every oncologist, nurse, surgeon, genetic counselor ever. Me, with breast cancer at 28, with my only two paternal aunts also getting it young. Paternal grandmother with pancreatic cancer. 

I've done all the genetic tests, even ones I was cautioned against. I just wanted to know. But nothing came back.

Sometimes, and idea comes to me and I panic: I haven't talked to my three youngest sisters about their risk of breast cancer. I haven't protected them from this beast, in the only way I can.

But then I remember. I don't need to give them information on mammograms and MRIs, like I do with my sister Miranda. My sisters Lizzie, Olivia, and Nellie aren't at risk for the same inherited diseases I am. Because they were born in a different country, to different parents. The things they inherited from their immediate family are different from the things I inherited. And I am so, so relieved. They are safer, from this one, than I was.

(I struggled a lot with how to say that. At first I thought maybe I should say we don't share genetics. But that's ridiculous, because all humans are 99.9% the same.)

I am a lifetime big sister. Miranda was born when I was 4, and Lizzie came home when I was 10. I was 14 for Olivia, and the ripe old age of 20 when Nellie was adopted.

You might be wondering why I bring this up. Well, this weekend the Times has run a story that feels... not good. It focuses on Korean adoptees who return to Korea, and advocate for the eradication of international adoption. The article offers no counter point to their argument.

Everyone experiences things in their own way (damn if I don't know that) and adoption is no different, so I'm not begrudging the adoptees profiled. I am pretty pissed off that The New York fucking Times would print such a one-sided and frankly irresponsible thing.

Thank God for Laura Clise's beautiful essay in Medium, which stopped my head from spinning off into the abyss. She writes, "Love is what makes a family. Love that transcends national origin, sexual orientation, or other differences — love through life’s challenges and disappointments."

Us.

We are a beautiful and crazy bunch, full of giggles and fights and nicknames and love so fierce it defies you to fuck with it. To say it should never have happened. 

I have biological family that I don't know, that I don't speak to, that didn't give a fuck about me when I was sick. These, according to some, are supposed to be the people who I look to to understand myself. Not Olivia, who at 17, was in the room when I was diagnosed, and was the only one to laugh at my pathetic jokes on the way home. 

We are sisters, in defiance of borders. We always have been, always were. Always will. Nothing can ever change that.



Saturday, January 3, 2015

Once more, with feeling: Is cancer the best way to die?

...or, once more with feelings other than rage.

I can't stop thinking about this "cancer is the best death" business. I'm pissed off, but I'm also extremely confused. 

To recap, on 12/31, BMJ posted a blog entry from Richard Smith, the former editor,  entitled "Dying of Cancer is the Best Death." And, predictably, hilarity ensues. 

Other bloggers have more eloquently, and with more grace than I could muster, rebutted the op-ed -- please read this post from Sarah of Fights Like a Girl, and Beth Gainer's essay. I thank these level-headed and eloquent women for their words and smarts and hearts. 

Go read this immediately

I will focus on a different facet of this frankly odd posting. I'm troubled by the fact that a grown ass man, a scientist, no less, seems to have lost touch with reality -- or rather denies reality -- in this way. I find it hard to believe that he's never been at the bedside of a dying person, so I don't think he can really claim ignorance here. I don't think he was trying to be a troll...I wish it were that simple. I don't think he thinks there's anything wrong or untrue about the rosy view he takes of death from cancer. He seems to see terminal cancer as getting to live a while in The Bucket List, and then going gentle into that good night. Uh, no.

But what upsets me the most is that I don't think he's alone.

Smith's piece called up a comment I heard from a literary agent (who didn't know my background) about being sick of getting proposals for cancer memoirs. "Get over it," she said. "Write a blog." Confronted with something that made her uncomfortable, made her possibly consider her own mortality, she rejected the work as meaningless and unimportant.

The thing about his tone deaf and insensitive comments is that they feel troublingly familiar. That there are very few steps between "Cancer is the best death," and "STFU and stop talking about it." These comments seem to come from a place of what must be a willful misunderstanding of the nature of disease and death, and are designed to shut down conversation. Smith is an extreme example, so let's think about some more every day interactions. How many of us have had a conversation like this?:

Cancer patient: I'm worried about dying. 
Well-meaning non-cancer person: Don't worry, you'll be fine! Anyway, none of us knows how long we have left. We have to live for today! Sha-la-la-la-la-la, live for today!
Cancer patient: ...

The respondent thinks they are being nice, or comforting. But actually, they are negating the cancer patient's completely justified thoughts, with the logic-defying "you won't die/we all will die" platitude. And they do this, consciously or not, because talking about death makes them extremely uncomfortable.

I was thinking about how I could channel my anger about this recurrent theme in our culture. (Pacing around flailing, while aerobically not worthless, didn't achieve much.) And I decided I can use my plentiful rage to start a conversation.

Instead of letting these comments shut down crucial communication, let's use this as an opportunity to talk death with our family and friends. What do you want for your death? Do you want to be at home? Who do you want to be present? If your health is in a slow decline, what types of medical interventions will you want? 

I started the conversation tonight with Matt. I'm not gonna lie, it was awkward. There was fidgeting, avoided eye contact, plaintive cries of "Why do we have to talk about this now?"

I likened it to a wedding registry. "If you don't tell anyone your thoughts, you end up with a $800 Steuben candy dish shaped like a snail." And nobody wants that.


Thursday, January 1, 2015

No, Actually Cancer ISN'T the Funnest Way to Die

In case you had come to the conclusion that 2014 wasn't so bad (no motor boating during pinktober, for instance) this happened:

"So death from cancer is the best, the closest to the death that Buñuel wanted and had. You can say goodbye, reflect on your life, leave last messages, perhaps visit special places for a last time, listen to favourite pieces of music, read loved poems, and prepare, according to your beliefs, to meet your maker or enjoy eternal oblivion.

This is, I recognise, a romantic view of dying, but it is achievable with love, morphine, and whisky. But stay away from overambitious oncologists, and let’s stop wasting billions trying to cure cancer, potentially leaving us to die a much more horrible death."

 - Richard Smith, for BMJ


Wait.

Just wait.

Sorry, I just threw up in my mouth.

Can I just say there is little more terrifying that the fact that the FUCKING EDITOR OF THE LANCET is saying this.

And can I say that people like him, with the so called "romantic view of death," ARE THE FUCKING PROBLEM. Hey, 19th century TB patients called, and they want their cliche back.

The "romantic view" stops us from seeing death for what it truly is. To know the realities. Instead we, as a culture, like to pretend it doesn't happen. We pretend that if we never give up, that we will never die. We collectively shush cancer patients who express feelings about it. We shame patients like Brittany Maynard for her choice to not have the kind of death that Mr. Smith so insensitively glamorizes.

So, what is this dude suggesting, anyway? That the treatment that I and so many of my dear ones received was a waste of resources, and we should have just accepted a graceful, beautiful cancer death?

I have to stop before I hyperventilate.

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.