In the name of awareness

(by Susan) 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:

“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?

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.

Cross posted at Toddler Planet. If this interests you, check out the comments over there. Quite a variety!

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22 Responses to In the name of awareness

  1. Anon says:

    I am sorry if this harmed or hurt you and other women who have gone through this hell and survived. It was meant to be harmless and women would do anything to raise awareness but sometimes we don’t think of the affects. Yes, there is awareness. But when I see things like this, it does remind me to check my breasts. It reminds me that I am young but not too young to get this. (37). It reminds me to remind my sister. So yes, we are aware, but reminders are needed every now and then to keep our mind on our health. You and the other women on this site are an inspiration and I admire you all.

  2. fifi says:

    I’m sorry dear sarah.

    Ordinarily I pass up memes, I only joined in because of the awareness factor. Forgive me.

  3. Jo Jo says:

    On one hand, I want to say don’t let a silly little game ruin your day. On the other hand, I know I still grieve the lost of my real breasts – even though I have a very nice reconstruction job. Most days I can let go of the grief. Some days, the smallest thing brings it rushing back. It seems our wounds heal, but we are always left with scars – emotional and otherwise – that remind us of the pain. Your words are eloquent and agonizing all at the same time. Stay strong, but grieve when you need to.

  4. Lela says:

    WOW! I am so sorry that these posts made you feel this way. As a Lupus patient (and I am in no way making any sort of comparisons) I understand having to change your life as you once knew it. To be very frank with you, Breast Cancer is one of my greatest fears in life, and when I read stories like yours I am amazed. I am amazed at what is involved in saving your lives, I am amazed at…I’m just amazed. Truth be told, when I first read about this bra game, and that it was in support of breast cancer, it crossed my mind for a split second, that women with breast cancer or survivors, might not be wearing bras and could get offended…but then I let taking part in the game get the best of me and thought, “Naaa, they’ll understand that this is in support of them”! I guess I was wrong. But I don’t know how you can be a woman or a HUMAN for that matter and not be sensitive or emotionally aware of Breast Cancer Victims or Survivors. I am truly sorry if I’ve offended any of my strong Sisters out there or their families. I wish you health and continued healing!

  5. Renee says:

    From a post-bliateral mastectomies/post-reconstruction/stage four cancer patient…

    I thank you.

  6. Katie says:

    OH MY GAWD. Thank you so much. Another double mastectomy here… you really said what I was thinking. I am definitely going to link this to my blog.

  7. Wendi says:

    I am a stage 3a breast cancer survivor. This January 30 I will celebrate 4 years since the fight started and which I won. I have undergone the bilateral, reconstruction, removal of the reconstruction due to infection, radiation, and reconstruction again still to look like the bride of Frankenstein under my clothes. I fealt proud to say that my bra color was skin because I don’t wear one. I refuse to cower to the big C and what it has done and you shouldn’t either. We can kid this monsters but and not let it take away our ability feel like we are normal. I know I don’t but I still won’t let it win. Be proud that you have your skin, even if it came from your stomach as mine does now. You are alive!!!

    • whymommy says:

      Oh, I am proud, trust me Wendi! After all, my home site has the tagline “The Joy of Life After Cancer.”

      I try to stay focused on what’s important. I just couldn’t let this one go.

  8. I am torn on this one. I totally get what you are saying as I too have been through 2 years of hell where the 1 1/2 years of chemo has left me with life long heart problems, and have had numerous surgeries after my mastectomy, and indeed need more…but when I got the Facebook message I thought it was fun and cute and I played along. Maybe because I did have reconstruction and do wear a bra (although I guess I don’t have to). Certainly you and I and everyone who has been through this terrible pain is aware to the point of being over-aware but I still think there are those, especially younger girls, who still need to be reminded to keep their doctors appointments and do self-exams.

    I felt that those FB responses that said “no bra” or “flesh tone” were great and to me felt empowering and I got the feeling that to those woman who haven’t experienced this, that maybe when they read that, it hit home with them and they understood a little more.

    I am so sorry that this game hit you so hard. I suppose it’s like any loss in our lives–there will always be painful reminders for the rest of our lives and I guess since we had no choice in our treatment our choice will lie in not letting these reminders get the better of us.

    Besides you are a survivor and have been through more than most will ever have to endure!!!!

  9. Jennifer says:

    Two years ago, maybe even a year ago I think I would have felt the exact same way. I had a left mast. nearly 5 years ago and a prophylactic right with bilateral reconstruction 3 1/2 years ago. I loved bras and gave away 36 to the Good Will a year after my diagnosis. (Yes – I think that might be considered an obsession) I only have a few now (and they not anything so cute as the old ones were) but they help me in my “normalcy”. So for that fact I played along.

    Still, I totally get what you’re saying. Like I said above, I know there was a time when I would have felt the exact same way. In fact, there are still times when I feel the same way and probably will for a very long time. Thankfully those times are fewer and farther between.

    • whymommy says:

      Jennifer, you’re ahead of me here and I totally respect your opinion. I do hope that the rawness will dull as time passes.

      Heck, I just hope time passes!

      šŸ™‚

  10. sandy says:

    simply beautifully written, poetic, honest, real. You are beautiful w/o your breasts! You are more than boobs. You were created to give life, to nurture, to inspire- and you are fully a woman, doing just those amazingly feminine things!
    Off to do my SBE šŸ™‚

  11. Traci says:

    Thank you. I hope you don’t mind…but I posted this on my fb page. I didn’t participate in the whole thing cause I wasn’t comfortable with people knowing what color I was wearing…and found that the only thing I was really aware of was how I was trying not to picture my friends in their bras. I was fortunate that an aquaintance posted a link to this, and am now “aware”. While the whole memo was inane in itself, it’s purpose came alive through you. Thank you for your honesty and bravery.

  12. Lyn says:

    I got the same email from a friend – regular friend not a breast cancer buddy- and I was like… awareness? I also found it odd, that knowing I lost both of my breasts just 3 months ago and still have open wounds from radiation so I can’t wear the falsies yet, that she sent me that email about ‘what color bra’ are you wearing. I didn’t respond, and I didn’t play, I just ignored it. I know it is intended for awareness, I read the spiel, but I think it’s like anything- if they have never been through it, they don’t understand. Great post by the way.

  13. Laurie says:

    My response was the same as that of Frances (although I probably couldn’t have put it as well).
    However, I am so sorry that you have been getting some hostile responses to your honesty and I do understand why you wrote it.
    Asymmetrically yours,
    L.

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