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Friday, March 4, 2016

March Forth

Today is my birthday. March 4th. Or, as a writing teacher once pointed out to me, "the only day that's also a command."

March forth.

I've been absent from here a while.

This is the farthest I've ever felt from my cancer experience. Someone might think that’s obvious and stupid, akin to “this is the oldest I’ve ever been." But post-traumatic time is not linear.

It helps to have a new project, this time a joyful one. We bought a house in December. It's upstate, on 13 acres, with streams and woods and meadows and a pond. We're just there on the weekends (for now...) and working on fixing it up. For Christmas, my mom gave me bee hives.

There’s a little honeybee in my heart. She builds a sturdy comb, and fills it with sweet reserves.

Worker bees are all female, and what they are fed as babies determines if they can become queen. They say bees are unable to be selfish because they identify fully with their hive. They are part of their larger thing. It's as impossible for them to act in their own self-interest as it for... I'm trying to think of a human corollary but cannot.

March forth.

I think the distance finally rushed in when I realized, down to my marrow, that there would be no fixing me. That I will never go back to who I was, but that I could move forward all the same.

I hate when people ask me about the silver linings of getting cancer. I hate when it's assumed what didn't kill me has made me stronger, wiser, kinder. That now I am automatically grateful and serene.

Because events don't do that. People do that. People choose the meaning of the events of their lives, and then enact that meaning (or not).

I don't look for the silver lining, because that seems like a denial of my actual experience. A coping mechanism, but not one I really find useful. This event was extremely difficult. Through it, I learned a lot about myself. Lessons I probably would have learned anyway, with time, but I have learned them early.

But here's the lesson I learned that I want to share with you now, today: march forth. Don't delay.

"There will be time, there will be time." No.

Don't let your life be small. Don't wait for things to be perfect to begin. Don't let expectations guide you.

My entire life I’ve wanted to live on a farm. For the past several years I've search online for cabins and farmhouses. was a favorite, I would think, “when I'm retired this is what I’ll do.” I was willing to wait 40 years for the thing I wanted. Why? I don't even know.

In this last year, we made several trips to the Catskills, Vermont, rural PA. Each time I felt the pull of these landscapes more and more strongly. Till one day, I wondered, why do I need to wait?

Don't be afraid of what you want. Don't forestall joy. Take it when you find it. Don't be stupid and assume it will always be there, waiting. Because you will die, and I will die, and we all will die, and none of us knows when.

Don't put off kindness; this brings joy sweeter than any other.

Today, begin to march forth.

Note: This is my last post. Join me at Ruralie for something completely different.

Wednesday, November 11, 2015


Matt and I had the pleasure of being interviewed on our first ever podcast: The Backgrounder, with Paul Brubaker. Listen to find out Matt's secret to staying married post-cancer.

Saturday, October 31, 2015

On walking round and round

It was two years to the day since I'd been told I had breast cancer. I stood just outside the mouth of the World Trade Center PATH station with a view of what felt like the entire island of Manhattan. I looped my thumbs into the straps of my backpack and started walking north. This, I’d decided, was how I’d fix myself. I would walk the island of Manhattan and prove that I was strong again.

Tuesday, October 27, 2015

What's a girl with cancer allowed to be?

So I've been quiet these few weeks. It's been something of an odd October -- things feel hushed, regarding both pinkwashing and my own anxiety. (Though we're not through October yet, so there's still time for a panic attack...or five.) Mostly I've been reflecting on where I am now. And the answer is, I have no idea.

I had an experience recently that was deeply troubling, but also instructive. I was in something of a focus group, in which participants were asked to describe cancer patients in a single adjective. (I was the only patient in the room, but certainly not the only person who had met someone with cancer.) The answers were collected and combined into a word cloud, and projected onto a screen. When I saw the product of the exercise, my jaw dropped.

Up on the screen, bright and large, was the word "Desperate."

Desperate, as in hopeless. Desperate, as in nothing to lose, as in not being ruled by rational thought. It's an antiquated idea, and only a few steps removed from doctors who wouldn't tell patients when they had cancer, for fear that simply couldn't handle it. Patients have worked hard over many decades to make sure their voices are heard and respected in the conversation; this felt like a punt back to 1960.

I tried to challenge it. I was upset, and all could say was "No," not right, rethink this, all of you. Before I had a chance to really collect myself and explain why this picture of patients was not okay, others in the room leapt to defend it, saying that, surely, were they in that position, they would feel desperate.

Not: "Patient in the room, tell us how you feel," but "be quiet, I know what I'm talking about." I am sitting there telling them that was not my experience, nor one I have often come across in my years as a cancerado. The people in the room were clinging so hard to this assumption that they couldn't hear me. They also couldn't hear how personally painful that word was to me.

It wasn't the first time I'd encountered a strange push back when sharing my story with people who otherwise seemed open to hearing it.

Since being diagnosed with breast cancer in 2012, I've realized there are certain acceptable story arcs for us breast cancer patients -- and for me, it really comes down to two possibilities: the inspiring, and the desperate. One is lionized and lauded in the media, the other is hidden and feared. And when you don't fit into one of those categories, people have a hard time with it.

During my treatment in 2012, I took a weekly photograph. When the first year was finished, I stitched the photos together into a time lapse video, which I posted on my blog. To my great surprise, the video went viral. And I felt the pull of both of these stereotypes in the time that followed.

Interviewed for articles and tv, I was often asked the same questions. But the last one was always the same: how are you now? And I felt, so heavy, the weight of their expectation, how badly they wanted me to tell them that I was cured. They wanted me in the pink tutu, they wanted me to say I was stronger than ever, that cancer turned out to be a gift (excuse me while I throw up). And when I didn't say that, how palpable the disappointment was. 

And the flip side -- I read in the comments on my video that because I hadn't lost a lot of weight during chemotherapy, I was "probably faking." Also that I was an attention whore. Because I didn't fit sufficiently into the model of the desperate cancer patient. Because the reality of my experience challenged their assumption so much, they were so uncomfortable, they had to lash out.

It strikes me now how rarely I haven been asked, "what was it like?"

I will tell you how it was: hard. Shitty. But worst of all it was lonely. Informed only by assumptions and fear, many non-cancer friends drifted away. This experience is unfortunately quite common. Perhaps afraid of encountering a "desperate" patient, many avoid their friend or family member completely. (Note to readers: don't be that guy. That guy sucks.) Remarks about staying positive and being grateful feel like admonishments.

But when it's you, which one of those story arcs would you rather have? Given only two models for survivorship, it's hard to begrudge those who choose the pink door.

Since my first intimate experience with cancer when Matt was diagnosed in 2008, I've met hundreds of people affected by the disease. They are all ages, many types of cancer, and with different prognoses. And I wouldn't call one of them desperate.

Sunday, October 4, 2015

Historical bad-assery

Damn girl. Damn.
Frances Burney underwent a mastectomy in 1811. I recently picked up her novel Evelina (after, um, I was supposed to read it in graduate school like 4 years ago). I've since ordered a collection of her letters, in which she describes the surgery and her recovery. More to come on that, but just felt like saying sheeeeeeiiiiit. Fanny's a toughy. Here she is:

Gives zero fucks.