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Honoring the Light.

… Let everything happen to you: beauty and terror. Just keep going.” -Rilke

I learned over the weekend that a friend passed away.

I had just sat down to a table at Garcia’s for burritos and horchata with Emily and Tammy before Addie’s reading at the Book Cellar in Lincoln Park, when I made the mistake of looking at my phone. There was the message: she was gone.

The news was something of a shock, like touching your hand to a hot stove. I was thankful in that moment that I wasn’t alone; a beautiful evening surrounded by friends proved a welcome distraction from the triggering affect of death now, like my mother has died all over again. The next afternoon hubs and I went for a winter hike where I could let myself trudge along in silence and reflection. The solitude, the sun casting long shadowy pines onto snow, the wind, the sound of my own boots crunching along the trail. It was the prayer I didn’t know how to utter.

Truthfully, I didn’t know her that well. In fact, we’d never met in person. We found each other through this strange web of connections known as the internet, which people are always quick to categorize as somehow less real. We connected through a series of links related to the Etsy Pinkwashing Debacle of 2012. She had metastatic breast cancer just like my mom. We bonded through our shared longing for a better way to honor those affected by cancer.

This I do for her today, sans pink ribbons and meaningless platitudes.

I’ll never have the privilege of standing at her grave or remembering the sound of her laugh years from now, but I’ll remember her spirit. I’ll remember her words, her story, her tenacity, her love. I’ll remember what it felt like to connect with her, another survivor, and how it made me feel less alone. I’ll remember the way that I felt her light, all the way over here in my little corner of the internet.

How do we honor the dead?

By taking up their tenacity, by telling their stories, by reflecting their light.

Rest well, sweet friend. You will be missed.

Out of respect for her and her family, I’ve chosen not to link to my friend’s blog or social media. This post is in memory of her, but it is also in honor of all those affected by cancer. If you or a loved one are living with it today, my thoughts and prayers are with you.

When I Say I Wouldn’t Trade It.

She would have been 52 last Sunday. We spent that weekend in Indiana, in the town where she was born, visiting her family whom we haven’t seen in five or ten years. The convergence of her birthday and our reunion wasn’t planned that way on purpose, it just sort of happened, a kaleidoscope of memory, of blessing, bitter and sweet.

Standing in the yard at Esther’s farm that day, fields of beans and corn stretching out in every direction, the blue sky vaulting above us, family all around, the ache settled in.

I miss you. I wish you were here. I’d give anything.

We always said we wouldn’t trade it. She even said it first. She was a leader in that way. Unflinching. Unwilling to let something like cancer ruin her, or steal her voice or her faith. It wasn’t a glossing over of the truth. It wasn’t a matter of pretending she wasn’t sick. It wasn’t an ignorance of the disease. No. It was her way of saying that life could throw anything at her, and she would keep moving forward. Looking back, wishing things were different, feeling sorry for herself, or giving up her desire to live and live well, that would have been defeat.

It’s a lot for a daughter to live up to. It’s a lot of gumption that, in my grief, I don’t always feel like I have. Cynicism sets in and I question whether or not saying things like “I wouldn’t trade” my mother’s illness and death for an easier life is synonymous with saying I don’t miss her or it doesn’t hurt or I’m fine, or perhaps worse, that other patients have to respond to cancer the same way as we have.

So what am I really trying to say when I tell you that I wouldn’t trade this, all this heartache, all this void, all this grief, for a life in which none of this had happened?

In Stranger than Fiction, there’s a part where Harold Crick is staying at his friend Dave’s apartment and the two are sitting at the dinner table eating, lost in thought, until Harold asks Dave a question.

“Dave, can I pose a somewhat abstract, purely hypothetical question?”

“Sure.”

“If you knew you were gonna die, possibly soon, what would you do?”

“Wow, I don’t know. Am I the richest man in the world?”

“No, you’re you.”

“Do I have a superpower?”

“No, you’re you.”

“I know I’m me, but do I have a superpower?”

“No, why would you have a superpower?”

“I don’t know, you said it was hypothetical.”

It’s a funny scene, but in previous viewings I’ve always kind of glossed over its poignancy. I thought of it again the other day while I pondered the meaning behind “I wouldn’t trade it.”

Whether we’re hypothesizing about the future or the past, whether we imagine having superpowers or we’re bartering with fate over terminal illnesses, we’re seeking a measure of control. We want to believe that we would willingly face death, knowing it was just ahead, and that we would make all the right choices and live like we mean it. We’re imagining a life in which God offers us two choices : Be a Better Person With Cancer or Be a Shallow Person Without Cancer.

We’re creating a sadistic god, a false dichotomy, a moral hierarchy, and a misunderstanding of sanctification that veers into atonement.

I heard things like “I wouldn’t trade it” and “don’t waste your cancer” and “everything happens for a reason” and “it’s all a part of God’s plan” for so long, that the subliminal message I interpreted from this cacophony of bad theology was that I wasn’t supposed to be sad about her illness and death. I wasn’t supposed to wish her back. I wasn’t supposed to miss her. That would be weak. That would be faithless. That would be defeat.

But in the last 20 months since she died, I’ve slowly realized that like every other cheap platitude, “I wouldn’t trade it” became an aversion to feeling my grief as deeply as I needed to. I said it when I was afraid of admitting to God that I was angry, bitter, lonely, and heartbroken.

And yet.

There was power in those words when my mother said she wouldn’t trade her experience for an easier life. For awhile I kind of lost the point of what she was really saying, and the cynicism set in and I wasn’t sure I believed all that hokey, hypothesizing, magical-thinking talk about hope and faith and prayer. But just like we have to grow up and find our own faith and beliefs separate from our parents’, I’ve had to figure out what “I wouldn’t trade it” means to me.

The hard truth is that a lot of the good, beautiful experiences in my life came at the expense of really hard, painful experiences like my mother’s death. I can’t explain why life is like that, but I don’t know that I want to anymore.

I’m more at peace living with “I don’t know” than when I staked my faith on having all the answers. I feel more free to miss her, not knowing why it happened, than when I believed her death was a moral to a story.

So when I say that I wouldn’t trade it, I don’t mean that I’m glad she’s dead. I don’t mean that I don’t miss her. I don’t mean that I wish this experience on others so that they can become a Good Person like I am, or that I expect them to process this experience the same way.

When I say I wouldn’t trade it, I mean that I wouldn’t trade who I am for an easier life. I wouldn’t trade the deep, beautiful, powerful relationship I had with my mother, or my other relationships that have deepened through this experience, for all the shallow relationships and physical health and earthly prosperity in the world. I will never regret learning the lesson that life is too short to compromise what I want out of it or who I am. It’s not a superpower, but it is a powerful thing nonetheless.

FemFest : My Daughter’s Body.

Today I’m linking up with FemFest, a three-day synchroblog devoted to exploring feminism and its importance, co-hosted by J.R. Goudeau, Danielle Vermeer, and Preston Yancey. Click over to Danielle’s blog to peruse the rest of these amazing stories, or to contribute your own. 

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This story of mine, it’s about a woman and her daughter. It’s about a fight for life and a fight for faith.

And it’s also, I’m discovering, about a fight for feminism.

I’m not sure my mom would have put it that way. She had some negative opinions about feminism, most of them owing to the particular breed she grew up with in the late 70’s and early 80’s. As she told it, there was a lot of hostility back then. A lot of confusion. My mother was college educated, the primary breadwinner in our household, a leader in her church. She would never have said that men and women aren’t created equal. But if I had to put words to it, “feminism” was not the lens through which she understood gender equality. She understood what it meant to be equal in the eyes of God, and that’s what mattered most to her. When feminism began to form, it was mostly in secular culture. I don’t think she knew back then how one could inform the other.

But as I read through some of the things she wrote about her experience as a young woman, as a wife, as a mother, as a cancer patient, I’m seeing this theme emerge. On one level, this is just a story about coping with tragedy, about the tension of grief and faith.

But because it is about breast cancer, it is also a story about women’s health.

And you could look at our family history and point to genetics as the main culprit, but that would only be half the story. From the dosage of birth control her (male) gynecologist prescribed her without batting an eye, to the endless treatments and choices she made to try and defy doctor’s prognoses once she was diagnosed with cancer, everything about my mother’s experience tells me a story about someone else deciding what women should do with their bodies. It tells me about dangerous assumptions and naive women and sickness being passed from one generation to the next, daughters without mothers and mothers without daughters.

Do I have kids now or later or never?

If I don’t want to have kids right now, what kind of birth control is healthiest for my body?

Do I have to take responsibility for birth control because – physiologically speaking – I am the one that will get pregnant? What can I expect of my partner?

Once I have kids, how do I stay healthy enough to raise them? When should I start having mammograms?

These are the questions she faced. These are the questions I face. These are the questions all women face everywhere, all the time.

My mom became her own advocate, she started asking questions, she took the reigns and outlived her doctors’ death sentence by several years. But it wasn’t until the tests came back malignant. It wasn’t until a lot more research had been conducted and showed that super high doses of birth control might actually produce something scarier than an “untimely” baby.*

And I guess the thing about feminism that I need, the reason why feminism matters, is that like breast cancer, it has motivated me to be my own advocate.

Feminism has motivated me to not only be concerned about my health and my future, but to do something about it, even if it’s telling my husband I’m not okay with taking a pill; I want you to wear a condom.

And feminism motivated me to marry a man that could look me square in the eye and say, I am willing to do that for you because more than anything, I just want you to be healthy.

And feminism is motivating me to tell this story, this story of a mother and a daughter, of breast cancer and women’s health, of grief and faith and feminism, so that our daughters grow up independent, happy and safe in their own bodies.

What’s your story with feminism? What has your experience been with learning to advocate for your own body? How has this factored into your choices with birth control? All voices are welcome here. And yes, male readers, you’re welcome to share your experience and understanding, too. 

*For more information on the troubling correlation between birth control and the increasing rate of breast cancer among women ages 25 to 34, see this report published by NPR today. Note that the NPR article clearly states that this is merely a correlation, not a confirmed cause, and that in my post I am merely writing about my mother’s experience and the likelihood that her dose increased her risk of breast cancer, which was hormone receptor positive.

Etsy and the Problem with Pink.

I love the month of October for a lot of reasons, but it’s also a month that I dread every year. While the leaves are vivid with color, retail stores everywhere are awash with pink, because it is “breast cancer awareness month.”

Most of you reading this know that I lost my mother to metastatic breast cancer in January, so it’s not my disregard for breast cancer awareness that bothers me about the pink ribbon. The reason I am so sick of the pink ribbon is because in my experience, the pink ribbon does more for the person that purchases it than those affected by the disease.

Nowhere is the problem with “pinkwashing” more evident than with Etsy and their “Tickled Pink” email and subsequent corporate cop-out.

Two weeks ago, Nicole Smith, a member of Etsy’s marketing team, curated an email full of sellers’ items clad in the ubiquitous pink “breast cancer awareness” ribbons. Though I have my qualms with the pink ribbon for all it does and does not represent, the email seems innocent enough until you click through each of the listings. Only 8 out 24 items listed in the “Tickled Pink” email actually claim to donate to the cause they tout, yet Nicole’s email encourages Etsy users to purchase the pieces as a way to “show love to the women in your life.”

In short, these Etsy sellers have happily capitalized on a sensitive issue, thoughtlessly tacking pink ribbons onto their products without supporting the cause itself. Etsy’s celebratory endorsement of the sellers’ deplorable opportunism only adds insult to injury. Since Etsy earns money from each item sold on their site, both they and their sellers are profiting from others’ pain, and from their consumers’ ignorance, because let’s face it – not everyone is going to read the fine print to make sure their purchase donates to the cause.

And herein lies the issue with pinkwashing, as Etsy has so finely exemplified for us :

When there is no charitable action behind the product – on the part of the seller or the buyer – it turns breast cancer awareness into a trendy parade of pink shit, making breast cancer awareness about the appearance of generosity, rather than actively making a difference in the lives of those in need. It gives consumers buying bags of pretzels and footballs and tennis-shoes – or in this case, mugs and iPhone covers – the feeling of having been generous, without their actually having to do anything.

But as Hila so aptly states,

“Consumerism is not ‘awareness’ about cancer; it’s consumerism. Let’s not pretend otherwise.”

That realization alone is enough to make blood boil, but then there is Etsy’s dismissive and impersonal response to the criticism over their “breast cancer awareness” marketing tactics. For examples, see Nicole Smith’s tweet to Acacia, Mary Andrew’s forum response and quote for the Daily Dot. As if those responses weren’t bad enough, there’s Marie Kelly’s response to my forum inquiry, which makes it sound like I’m just another Negative Nancy trolling the internet. And then there’s Nicole Smith’s reply to my private message on Etsy, which although I can’t reveal its contents due to Etsy’s site policy, was nearly verbatim what Mary Andrews published publicly, with zero acknowledgement of my personal story as a daughter of a breast cancer patient or as an Etsy seller that actually donated a portion of my profits to my mother.

Etsy has had ample opportunity to express solidarity with those who have been directly effected by breast cancer and hold themselves accountable to their brand as a “community of artists, creators, collectors, thinkers and doers,” but instead, they have chosen to make excuses for themselves and label criticism as “negative reference to other sellers,” as if voicing our frustrations and concern equates to hate speech.

This, ultimately, is why I have lost faith in Etsy’s brand, and it is the reason why I am choosing to close my Etsy shop :

They have made it clear that my voice doesn’t matter, nor do Acacia, or Jane, or Hila, or anyone else that is disturbed by their actions.

I’m not just upset by their ignorant and insensitive attempt at marketing to those affected by breast cancer. I am angered by their continued disregard of the voices in their community asking them to be accountable for their actions.

Nothing says corporate cop-out like a deliberate blind eye to someone else’s pain.

I’ll finish this post by saying that Etsy and other corporations like them are only partially at fault. As consumers we have to acknowledge our responsibility in this issue by being active in our charitable efforts. The pink ribbon on your bumper, Facebook profile picture, sweater, cereal box, means absolutely nothing if you are not reaching out to the people around you.

True generosity is radically active.

It is not fluffy or pink or cutesy or marketable. It is not the over-sexualized saving of second base. It is not the color of your bra in a cryptic Facebook status. It is tangible, it is personal, it is scary, it is unnerving. It is ugly-crying on the couch with your friend as she (or he!) discusses their diagnosis.

If you know someone battling breast cancer, or any other terminal illness for that matter, then reach out. Make them a meal, run a marathon for them, hold a benefit for them, send them a card, cry with them, promise to care for their families when they are gone. THAT is how you support a breast cancer patient.

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Choosing to Live

“I chose to live like I was living with cancer instead of dying from it.” – My Mom.

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Why does this post not have a title? Because I’ve chosen the anti-theme.

The theme is : there is no theme.

The theme is : there is no synopsized, clever label for what my life is about right now.

Writers get very fussy when there seems to be no linguistic solution for whatever it is they feel. At least this writer does. Articulation is my life. I’m not the try-this-on-for-size writer that says the same thing fifty different ways of average. No. A clear, concise, carefully-crafted thesis is my policy. On the one hand, I’m proud of it; words are a finicky medium.
The best writing is like oil-painting. I’ve always found both to be difficult, because at some point you just have to leave the piece alone. An extra stroke or word or phrase will only make it muddy. The image will lose it’s vibrancy and it’s clarity, it’s meaning.

Sometimes writers don’t know when they’ve written something that it makes readers feel like they’re running a marathon on a path made of… pudding. Thick, messy, icky-sweet, utterly debilitating. They’ll never make it to the finish-line.
On the other hand, the times – like now – when I feel like I can’t articulate myself, I become too restless to let the writing process flow easily. I write, erase, rewrite, and slaughter.
Clear and concise thesis? Abandoned.
I’m left with scraps and ramblings. I’m left with a muddy, indistinguishable image of my life, where my thoughts and feelings run together like all the wrong colors from a dirty brush.

And I also find reading others’ writing tough to swallow. I’m often envious of the phrase or analogy that they were smart enough to articulate before I could reach it myself. 

Yes! That’s exactly what I mean/think/feel! Damn. They said it first…

So I am both frustrated with myself and starving for inspiration, for something that doesn’t make me feel like this whole writing business is a spectacular myth. My solution-oriented self isn’t handling this well, clearly.
Before I get too whiny and cynical about “how hard writing is,” let me just say that I haven’t given up. I know this is only a funk, a season, a ‘tude, a phase. I will exhibit confidence in my writing through action, if not in thought.

I need to put myself out there more. I need to write, write, write, even when other things may feel wrong.

So I will.