In the name of awareness

If you’re on Facebook, you’ve seen the meme going around the past couple of days.  Women the world over are posting colors to their status updates.  Lots of black, some pink, some white, a virtual rainbow.  It’s a game that several of my circles (high school, local friends, blogging friends) are playing right now, and it looked cute if harmless.  I wanted to play.

I tracked the game back a couple hours and figured it out — they were writing their bra colors!  I put hands to keyboard and wrote … nothing.  Truth is, I didn’t know what to write.  I wanted to frivilously play along — the boys had gone to bed, and this was MY time, after all — but I couldn’t.  And why couldn’t I?  If you know me, you don’t have to ask.  But if you’re new here, I couldn’t play along by posting the color of my bra because I don’t have one.  I don’t own one.

Two years ago this month, I underwent surgery, you see.  I had a double mastectomy to remove the cancer that was trying to kill me.  In my right breast, Stage III inflammatory breast cancer, a fast-moving, deadly cancer that kills more than 60% of women in the first five years. (Statistics have improved somewhat since my diagnosis, but it’s still the second-deadliest cancer, second only to prostate cancer.) In my left breast, potential.  Potential that the same cancer would recur, as it was in my lymph system, coursing through my body, even as we tried to kill it with six months of tri-weekly, then weekly chemotherapy.

We had been through hell.  First the cancer, then the chemo tried to kill me, and both of them almost succeeded.  I was in bed for months, too tired to move.  I couldn’t leave the house for fear of infection during flu season — and we had to take my oldest out of preschool, to keep those germs at bay.  At one point, the taxol had ravaged my nervous system so much that I lost the use of my legs.

After all that, we had to wait for my body to rally after the last chemotherapy treatment and become strong enough to survive the surgery.  As each day went by, I would grow stronger — but so would the cancer.  and if it grew faster than my white blood cells rebounded, then the surgery might not happen, and the tumor would be inoperable again.

It was terrible.

But eventually the day came, January 23, 2007, and I was able to have my breasts removed.  I’ve never felt so relieved in all my life.  This was my one big shot at getting rid of (most of) the cancer in my body, and starting life anew.  This was it.  This HAD to work.

And it did.  I made it through surgery just fine (twittering when I woke up, and blogging about it the same day).  I went through the gory aftermath of breast removal, and the difficulty of explaining it to my children.  We found out that the second breast was not innocent at all, but fostering its own little type of cancer, Paget’s disease.  If I had not removed it preventatively, I could have been back in chemo within the year — if it were found in time.

So I have some history here.

But I tried to shrug it off and play along.  I wrote “None — In fact, I don’t even OWN one! :-) ” and watched my friends play along in their own way, hoping I didn’t make anyone uncomfortable.

But what I saw was nothing short of amazing.  I’d forgotten for an instant that this wasn’t about my story.  This was about our story, and the Mothers With Cancer were coming out to play too.  Here’s what they wrote:



“White, with pockets.”

And then, in the comments, some amazing things began to happen.  Their friends came out to support them, cheering them on.  Friends engaged me on FB and twitter too, talking about it, asking why I felt left out, and letting me know that the whole meme was staged by some women in the midwest urging awareness of breast cancer.



Aren’t we aware by now, people?  Don’t we know that we need to understand our own bodies, take notice of changes in one breast but not the other, and call the doctor when we see that something’s changed?  Don’t we know that we need to talk to our doctor about thermography or mammograms?  Don’t we know?

As I talked to friends on twitter about it last night, a single message came through from my friend and fellow survivor @stales.  She said something that struck me to the core.  She wrote to all: “Time for a little less “awareness” and a whole lot of “action”: the time to act is now: address the causes!”  She’s smart, that @stales.

Other cancer survivors joined in, telling me that they felt left out too.  After all, this was ostensibly an effort to raise awareness of breast cancer — but one in which breast cancer survivors themselves could not participate, and were reminded (as if we needed a reminder) that we didn’t need bras anymore, that most basic undergarment of women everywhere, that symbol of sexuality, for the simple reason that we had already sacrificed our breasts in a hail mary attempt to keep the rest of our bodies from dying of cancer.

That’s what it is, you know.  It’s not a choice.  It’s not just another treatment option.  Women have mastectomies, double mastectomies, reconstruction (or not) because we have no other choice remaining that will give us a shot at life — life with our children, our partners, our families, and our friends.  And so we tearfully bid our breasts goodbye.  We submit to surgery, weeks of the aftermath, drains and gashes where our breasts once were.  We submit to doctors and nurses and students gawking with surprise when we disrobe for exams (not the oncologists, of course, but we still need regular checkups like everyone else, you know).  We submit to months of physical therapy to rip the scar tissue off the muscles that stretch to cover our ribcage.  We submit to lymphedema therapy, taking up precious time, time that we fought for, time that we sacrificed for, but time that nonetheless much be used for even more medical treatment, to deal with the aftermath.

And then we go shopping.

Clothes that fit just a few months previously don’t fit anymore, you see.  Every. single. shirt. is stretched out over the chest, and most new ones don’t fit right either.  Princess seams, sewn to flatter the big-busted and small-busted alike only serve to remind us, the no-busted, that we are no longer princesses.  V-necks are flattering, but only if they are not too deep, cut to show no cleavage, as our cleavage has been taken from us as well.

And, for a while, the reminders are everywhere.  Every TV commercial with the Victoria’s Secret angels rankles.  Every low-cut shirt sparks the tears.  Every nightgown cut to flatter falls — flat — and we cry into our pillow.

We are aware, you see.  We are all too aware, and we work to escape the reminders.  Our friends dance around us for a while.  They don’t invite us to the pool (have you ever gone swimsuit shopping without your breasts?).  They are gentle, and careful, and form a wall of support around you.

But eventually, life moves on, and the wounds scab over, and the scars begin to form.

Until one day, one day, when a harmless meme rips them off, and you realize once again that you will never be the same.

Edited to add:  Well, this struck a nerve.  35,000 people read this post in the first two days, and many have written in asking what action they can take.  Here are some ideas.

Originally posted on Toddler Planet 1/8/2010

Susan read this post to 2000 bloggers at BlogHer’s Community Keynote on August 6, 2010. Click below for video.


9 Responses to FB

  1. […] Also, if you want to know how a breast cancer survivor feels about the whole thing, click here. […]

  2. Lisa says:

    Thank you so much for sharing your story. You seem like a warrior. I hate the FB game for so many reasons, and wrote a post about an alternative http://wineandglue.blogspot.com/2012/01/breast-cancer-awareness.html. My thoughts and prayers are with you. I would love to add a link to this post on my blog. Is that ok?

  3. Gail says:

    Susan here it is three years later and the dumb facebook game continues. You post here is/was so thoughtful, articulate and right on. I was diagnosed two weeks ago and I have a good prognosis. Still I’m finding this facebook game pretty irritating and thoughtless. You have had a much harder road, and my heart and prayers go out to you and your family.

  4. Gail says:

    Just looked at more recent posts and realized Susan passed away last year. My condolences to her family and friends. What a remarkable woman she was!

  5. “FB Toddler Planet” was honestly compelling and enlightening!
    Within the present day world that’s really difficult to carry out.
    Many thanks, Alfredo

  6. Olawale Lawal says:

    You a great warrior. Writing your feelings and that of women the way you did here is touching. Never for once taken time to read anything about breast cancer.

    My thoughts and prayers are with you,
    ‘Lawale, Nigeria

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