Last time, this time

Last time, my love for my newborn baby and his big brother — and the Daddy who danced in the rain with us — pulled me through.

This time, they pull me — but my work pushes me.

And this time, I make time for that work, for I understand that it drives me forward into the future.  A future that I can create.  A future that maybe, just maybe, can be about more than surviving to erase the maybe-days of a sad childhood that otherwise awaits my children* — a future that is also about me.  My work.  My loves.  My legacy. 

A future that is still open to me creating a new legacy, unlimited, rather than a month here and there alloted to put the polish on the small little legacy that I once thought would sit quietly in the corner of my lifetime, had it ended with my diagnosis in the too-bright summer of 2007.  Two little boys.  A five-year career with NASA.  An overgrown garden.  And a love that was at once the foundation and the fruit of all of these.

To this, I will add a return to faith.  A book, or two.  A job well done.  A little extra exposure to a shared love of science among children of the internet.  A tight web of friendships among people who had no right to ever expect to meet.  And with faith and science and love comes hope.

hope that i am not done writing my legacy.

…

* It is a cold calculus, but true nonetheless:  Every day that I can bear the chemo and push forward with confidence is a day that my children can live and grow in the sunshine of a “normal” childhood, and a day that I know that they are not saddled with the sadness of living without their mother.  I seek normalcy for them above all else, and I do not hesitate to add moments of joy and abandon and paddling in the creek without our boots on.  For of such everyday magic a childhood is made, and I am determined that my little loves will have good memories of growing up, of nature, and of being with their mama as she loved the world, and, for a time, it loved her back.  Today I embrace nature, and faith, and joy, and hope without reservation, in the hope that it will be reflected in their own lives one day.  If I cannot be there for them as they grow all the way up, I can at least give them a good foundation to build on.  I can give them today.  

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BlogHer Voices of the Year

In April, Amy @Teachmama nominated me to read this post at the BlogHer Voices of the Year Community Keynote.  I was selected (yay!) but the original post was far too long.  Here’s the short version, which I hope I’m reading right about now in less than four minutes.  🙂 

In the name of awareness

Six months ago, colors started appearing in my friends’ facebook updates.  Lots of black, some pink, a virtual rainbow.  I wanted to play along by posting the color of my bra too, but I couldn’t because I don’t have one.  I don’t own one.

Two years ago, I had a double mastectomy to remove the cancer that was trying to kill me.  I had Stage III inflammatory breast cancer, a fast-moving, deadly cancer that kills more than 60% of women in the first five years, and presents without a lump.  First the cancer, then the chemo tried to kill me, and both of them almost succeeded.  I had to have my breasts removed.  After that, radiation, more surgery, and – well, I have some history here.

I tried to shrug it off and play along.  All I could write was, “None. In fact, I don’t even own one!”  I watched my friends play along too, 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:

“Nude.”

“Nothing.”

“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.

Really?

Awareness?

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?

I talked to friends about it on twitter.  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 – amputations – 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.  We submit to months of physical therapy to rip the scar tissue off the muscles that stretch to cover our ribcage.  We submit to weeks of 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 are gentle, and careful, and form a wall of support around you.  

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.

Thank you for visiting my blog!

Fighting breast cancer — with our actions, and our words

BlogHer asked me to write a post for them this week.  I dillyed and I dallyed, hesitant to dip my toe in over there, and to ask the blogosphere for a single thing more.  But in the end, I did, because the cause they asked me to write about — blogging about the Avon / Love Army of Women and the opportunity to make a difference with our words on October 1, was important. 

Here’s how it starts.  I hope you’ll click through to read the rest.

One in eight women will get breast cancer.  But you know that, right?  You walk in the walks, you do your self-exams, and you worry about your friends who find a lump or start treatment at an early age.  October floods the shelves with cutesy pink ribbons, yogurt lids, and vacuums, and you roll your eyes in private at all the attention given to breast cancer awareness.  You’re AWARE already, and lament that with all the attention and funding given to breast cancer, there should be a cure by now.

You’re right.  There should be a cure by now. (more at BlogHer)

Comments are welcome here or there.

If you’re going to BlogHer this weekend, please join me at any or all the following events:

Session 1: Stimey‘s session: 

Blogging Autism: Shattering Myths, Opening Eyes, and Finding Your Tribe 

Session 2: Change Agents: @fakeplasticfish @lawyermama Melissa Silverstein and Gina McCauley speak on

Creating Tangible Social Change: How to Move People to Action

Session 3: Change Agents:  @JessicaAPISS, @TechSavvyMama, @Teachmama, and I are facilitating a Room of Your Own for discussion and community-building:

Resource Blogging: Serving Your Community One Post at a Time

Community Keynote, BlogHer Voices of the Year Gala and Art Auction

Featuring my gold shoes, and a post yet-to-be-announced

Session 4: Our friend @punditmom, @phdinparenting, and @stephanieroberts talk about the power of women blogging online:

Change Agents: Radical Blogging Moms: Don’t Even Think About Not Taking These Moms Seriously

Morning Keynote:

The International Activist Blogger Scholarship Recipients Esra’a Al Shafei, Dushiyanthini Kanagasabapathipllai, Marie Tringona and Freshta Basij-Rasikh are appearing on BlogHer occasionally, and their words are a peek into a different set of worlds I was not even aware still existed. This is important, and I’ll give up a competing sponsor event for this. These women are incredible, speaking up wtih their words as their very lives are threatened.

Session 5: Change Agents: Morra Aarons-Mele and Stephanie Wilchfort are leading an intriguing action-based session that I’m really looking forward to:

Screw Work-Life Balance: We Need Work-Life Policy!

What other sessions are you going to?  Why?

Cancer makes me angry

Three years ago today, I heard words no 34 year old mom of two should ever have to hear:  you have cancer.

I stared in disbelief, reeling, rejecting the diagnosis even as I heard the words echo in the little room.  Cancer is for older people, like my mother-in-law, still reeling from a cancer diagnosis herself just a week earlier.  in fact, my husband had just returned from helping her through her own biopsy and lumpectomy, halfway across the country.  He held my hand, strong and confident, but I could feel his heart sink next to mine.

The kids — our kids — home with Grammy — what would happen to their childhood?  Would they be sentenced to a babyhood indoors with a sick mama?  Worse — would they grow up without their mama?

So much went through my head in that first moment.  So much worry.  So much fear.  So much … shock.  I had only gone to my ob/gyn in the first place because my baby was still refusing to nurse on the right side.  We had been to his pediatrician time after time, to the lactation consultant weekly, but still, no dice.  My five-month-old baby steadfastly refused to nurse on the right breast.

It turns out that a newborn rejecting one breast is a sign.  It’s called Goldschmidt’s sign.  Here are some other signs that something may be wrong with a breast, and that you should get them checked “to rule out cancer.”

12 signs of breast cancer

I’m now in treatment for a second stage III cancer, or a metastasis of the original inflammatory breast cancer.  It doesn’t matter which one, really, both are hard enough.  The cancer sapped my body of energy over the months it lived in my body, growing and spreading to thirteen lymph nodes under my left armpit.  We had it cut out right away and started radiation.  Treatment is working, but it’s not a cure.  Even the chemotherapy that I start again next month is not a cure.

We need a cure.  Cancer sucks.  We know that.  You know that.  But it still makes me angry, as I sit here in my living room watching my children play, helpless to join them on the floor with their matchbox cars or play catch with them in the yard.  I want my future back.  And it makes me angry.

If cancer makes you angry too, there are things you can do to fight back.  You can raise awareness, by posting a link to reminder for your readers to “check themselves” on your blog today.  You can find out more about research studies that are happening online or in your area, and you can join the Love/Avon Army of Women.  You can take action by joining the American Cancer Society Cancer Action Network and making phone calls to your congressional representatives when a cancer issue comes up for a vote.  You can take action on this, in your community and in your world.

We need to.  We need to FIGHT this beast called cancer, before twenty more moms are diagnosed and their lives changed forever.  This isn’t an easy battle, but it’s one I fight every day.

Susan Niebur is an astrophysicist, a mom, and a cancer survivor, blogging her story every day at Toddler Planet and Mothers With Cancer.  This post originally appeared at Mamapedia on 6/24/10; if you haven’t read it there, go check out the comments.  You’ll be amazed.