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. 🙂
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:
“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?
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!
I haven’t commented in a while Susan, but this is such a beautiful piece. Although you lost your previous life and your breasts, you have received the gift of writing and the ability to touch people’s lives.
I hope that the knowledge of how much you are accomplishing with your words acts as a balm to some of your personal pain.
I’m so glad you posted this right now. It kinda makes me feel like I can be there with you a little bit.
I hope that it went well (I know that it must have), and again – I am so incredibly proud of you.
Susan, just heard your story at blogher conference. You moved me to tears with your touching story. I am going to share your story with two women I know that are currently going through treatment. I know your blog will be inspirational and help them connect with other young moms with breast cancer. You have a gift, thank you for sharing your story.
I had one breast removed, so rather than being completely flat chested, I’m lopsided. A huge D cup on one side and a cavity on the other. Finding a bra that will support the one side and not hurt the other side is nearly impossible – I’m sticking with sports bras, but even they are uncomfortable. Getting dressed has never been so frustrating.
Just wondering if you’ve tried a “cancer-fighting” diet. http://www.cancerproject.org/
I have a friend with stage IIIc breast cancer and have made a lot of foods from Rebecca Katz’s cookbook, trying to stick to vegetarian as much as possible. After 3 rounds of AC Chemo, her tumors shrunk. Still long road ahead, but I’d like to think changing her diet (no processed foods or red meat, more beans, whole grains, veggies, fruit) , along with lots of prayer, exercise, rest and chemo helped.
Susan, you were not only incredibly moving and poised during your reading…you LOOKED STUNNING! Many kudos to you and many thanks for sharing your message and your story with all of us. xo
I got chills when I saw this blog post. I could hear your voice, strong with emotion, reading it. Thank you so much for sharing your heart-wrenching story and shining such a beautiful light in the world! I look forward to your future posts! Take wonderful care, Stacey
I’m no seamstress – my husband has to re-attach buttons – but it looks like there’s a market to be explored. Is there no-one out there making flattering feminine clothes for post-mastectomy ladies? If you want to pass this idea on to anyone, be my guest.
Reading it again I relived hearing you read it. It feels strange to say ‘what a beautiful piece’ but it tru;ly is. I am so glad you are here. Fighting and healing every day. Thank you so much for letting me be there to hear you read it.
I am so proud to call you friend. Congratulations (again) on being a Voice of the year. I wish I could have been there to hear you, I’m sure you were fabulous!
As incredible as this is to read, it was SO POWERFUL to hear Susan read this aloud. Incredible.
I agree with Stimey. It was absolutely incredible to hear. It was so wonderful to meet you at the Green Party.
You were amazing at BlogHer. Hearing you read this piece was a highlight of the conference. All best wishes to you.
Thanks so much for this blog post (I think I read it when it first came out but didn’t comment). It particularly resonated with me because I am a Public Health Sciences faculty member(my Ph.D. is in Nutritional Epidemiology) and also have IBC. From both perspectives (patient and a reseracher), I realize that what we need now is a lot more research (in both etiology and cure) and a lot less money spent on pink cr*p to “increase awareness”. Thanks for highlighting this issue.
I wish I could have heard you read this, just reading it by myself was amazingly powerful. Like Judy, I too am lopsided and have 1 breast. Its amazing how we do get used to it and then all of a sudden, the scab is ripped off and its completely raw again and even looking at ourselves in the mirror is painful because of the loss of our breast(s). I’m with you. I pray that more money can be put into genuinely beneficial treatments and hopefully, a cure.
What an intense and honest piece of writing. Thank you and thank you for sharing it. My mother’s mother died of breast cancer at age 51 or 52 in the mid-1960s, my mother had a double mastectomy at age 44 when I was 21 and I’m now turning 48 with a lot of mammograms, MRIs and other assorted screening records in my history, but so far – no breast cancer. I feel like it’s just a matter of time and every time I read about a friend or just a moving story about the disease, I try to remember that I’m late in getting my mammogram – again. Or that I let them put off my MRI for another year. Thank you for being the reminder I shouldn’t need and maybe saving my life, the way I’m sure you are saving so many others and fighting for yours.
[…] would have been hysterical if I had missed it. In case you weren’t blessed to hear it, give it a read will ya? It will move you to your core, I promise you. I took many videos and pictures of her, but this one […]
Honored to know you. It’s rare that someone can teach real awareness with such love and compassion. Thank you for drawing on all your energy to take that stage and knock our socks off!!!!
Thanks, Jessica. For everything.
[…] to go out, and I smiled and smiled and smiled. I had asked for help. They had given it. And the post I read rang true […]
I would have preferred that you had written this on an entirely personal level rather than using the collective we. As a breast cancer survivor who chose bilateral mastectomy as a treatment option, you do not speak for me. I was far more upset by this post than by the facebook entries. You are, of course, entitled to your opinion and feelings, but please don’t write them as if they belong to all women having had mastectomies.
Maggie, I’m terribly terribly sorry this upset you. I work very hard to write in first person for this very reason.
I appreciate your reply.
I cried all over again reading this. What an honor to know you. To know such a fighter.
Your words have really hit me. REALLY hit me. I’ve never thought that far deep into the aftermath. You opened up my awareness in a way that I never even considered. Having never been touched personally, I just didn’t know what I didn’t know.
Thanks, Jennifer! I really appreciate hearing that my words touched you.
It was great to see you last week, however briefly!
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