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:

“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.

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

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384 Responses to In the name of awareness

  1. Corina says:

    Thank you. Thank you so much for sharing. Enough awareness….. more action. Perfect. Thinking of you.

  2. Morra says:

    Susan, talk about consciousness raising. This post has jolted me out of my Facebook-meme forwarding inertia. Thank you. And I’m sorry for tagging you!!!

  3. Thank you. This is so powerful. I couldn’t participate in that FB meme yesterday, it just didn’t feel genuine or useful to me. Your words help me realize why.

  4. marty says:

    You are actually the reason I didn’t post mine. Thought we could hang back together.

  5. Karen says:

    I hear you. I couldn’t bear to play along…awareness is over-rated. We need action, action, action. We need a cure!

  6. jen maiser says:

    aweseome post. thanks for writing this.

  7. pixiemama says:

    I’m truly sorry for your difficulties. I have a son with autism and a son who has survived a brain tumor. I have times when I feel really cranky about the “awareness campaigns” but then I remember who I was before I had these beautiful children. I was certainly aware. I just wasn’t aware how MY life would be affected. The awareness campaigns chafe me, too, but I try to be lenient. Awareness can lead to earlier diagnosis & potentially better outcomes. The general public has no idea of that which WE are aware.

    I’m so glad you dodged the bullet.

    love.

  8. You are the reason I didn’t post mine either. xoxo Great post – I just shared it on Facebook. Not to make anyone feel bad, but hopefully to spread this very important message.

  9. Susan,
    Like you I hadn’t realized it was a woefully misguided PSA. I hadn’t read the fine print prior to participating. Oops, with a GIANT O.

    Lesson learned.

  10. Amazing, AMAZING post Susan. LOVE it.

    And you’re completely right. We need action, not awareness. We have plenty of that awareness.

    *hugs*

  11. muskrat says:

    I thought the meme was a little stupid when I saw it yesterday, and now that I’ve read this, I think it’s a lot stupid. Everyone’s “aware.” We should donate some time and money instead of typing colors.

    And this from a guy who just learned his dad has cancer.

    • Katrina says:

      According to ABC news in a matter of 24 hours the traffic to Susan G. Komen increase over 2000%

      Just because it’s different dosen’t mean it’s wrong or dumb.

      It was fast…free…generated action…it worked.

  12. meg brothers says:

    thank you for telling the truth. it matters. xoxo

  13. Erika W. says:

    Thank you for posting this. I’ve linked the post to my FB page so other friends can read too.

  14. You are so brave and I will always remember the grace with which you fought the battle when you were so ill.

  15. Joie says:

    Posting a link to this on my Facebook wall. Well said.

  16. Thank you for sharing your thoughts. I think the word awareness is over-used. But, it seems something needs to be done to keep breast health and knowing your body top of mind. I for one am guilty of doing my self exams sporadically.

    Actions do speak louder than words though and I, too wish to see more happen in the areas of research and a CURE! I’ll be doing my second 3-day walk this year and will keep this post in mind on the days I don’t want to train. Thank you for being a motivator!

  17. ShannonP says:

    Beautifully put. Thank you for that. But, on that note… what action do you propose? I would love to be action and not awareness oriented, but I don’t know how to do that aside from walks and fund-raising.

  18. Social comments and analytics for this post…

    This post was mentioned on Twitter by Chookooloonks: You know that FB meme where you to declare bra colour in support of breast cancer awareness? B4 you do, consider this: http://bit.ly/7k4mJV

  19. amanda says:

    Feeling six shades of admiration for your way with words.

  20. ljpock says:

    My thoughts are with you having gone thru such an ordeal and survived.

    I do have to respectfully disagree on some points though. Yes we need action, but I don’t think awareness is bad. I have younger cousins, nieces, etc. who aren’t at an age yet to officially “worry” but I think showing them that it’s something to talk about it good. Keeps it fresh in their minds. My best friend who lost her mother to breast cancer participated willingly.

    In general I am for awareness campaigns because he more people know, the less stigma that’s attached. I have a not well know chronic auto-immune condition that can often take quite some time to diagnose. And to be honest I get sick of try to explain it to people. I wish there were awareness campaigns so more people would understand what it is, look for the signs in themselves, and not look at me with two heads or in disbelief, when I tell them what it is (most people don’t want to believe a 30-something year has a form of arthritis they’ve never heard of).

    I think the way you handled your status was right on because I think that helped show the true side of the disease. Maybe that status update prompted someone to schedule that mammogram they’ve been putting off because although the colors are “cute”, you showed the other very real side we all must think about – and take action on by remembering to look after our own health.

    While I don’t know what it’s like to be in your situation, nor try to pretend like I do, I hope you can still take some good out of it and know that others, like me, do feel that your post (and others) can still help.

    • milly says:

      I feel the same way you do. I have two daughters who are approaching their early teenage years and a mother who is a long term survivor of breast cancer and had a radical mastectomy almost 24 years ago now.

      I have other friends who have had breast cancer and removal of their breast/s and they have daughters as well and they are always trying to make the young women aproaching this age aware of things so that they remember to check themselves etc..they had no problem with the facebook game, as they said it was harmless and made people wonder what we were putting the colour on there for..I think we forget the there are always young women hot on our heels, every year, that for some reason, might not be aware of the importance of checking their breasts (and other body parts) for cancer and I dont think its ever a bad thing to be reminding them. Yes we need to have action as well..but by slowing down on the awareness campaign because WE know it..we have heard it all so many times..its not about us..its us older ones teaching the younger ones, this will be important forever to do until there IS a cure. I will certainly be making my daughters and their freinds aware after the history of breast cancer in my own family (not just my mother)..or I will not be doing my job..I would hate for one of them to have a bad story to tell one day because I felt that there was too much awareness being bantered about so stopped it and left them work it out for themselves..both sides of the argument need to be constantly in our minds..awareness AND action for cure.

      • nangald says:

        Also agree with above…I am a four year survivor. We do need to impress awareness in the girls as well as being proactive in our own health.
        I believe our suffering would be in vain if we don’t keep others talking about it and looking for a cure…although I believe in the “garbage in, garbage out” theory. Prevention is key for the kids…
        The one thing this did is exactly what it was supposed to do…keep people talking about this beyond October…we need to be talking about this all of the time.
        Please, sign up for the Army of Women too, it is the most proactive way to help find a cure by finding out the cause. All of us should be in the system. The only way this country cured polio was the moms became very proactive in their own health and the health of their children and DEMANDED there was a cure. We too need to DEMAND it of our system of science.
        Be well and have the hope.

    • MuseOddity says:

      Do you happen to have ankylosing spondylitis? Just wondered because I am 29 and was diagnosed several months ago and I have yet to talk to someone outside of the medical community that has heard of it! Even some people within the medical community have never heard of it, lol.

  21. Lindsay Lebresco says:

    You have a powerful story & a powerful way of always communicating that story and point of view. While the meme may be a little “misguided” the fact that yesterday I wasn’t actively thinking about breast cancer and the meme made me stop and think for even just a minute about my aunt, my cousin, my friends, is a good thing. And now more conversation here on your blog. Zero conversation certainly doesn’t incent action- at least talking about it (“awareness”) guides some people into action.
    GREAT perspective Susan- as always. Thanks for sharing.

  22. Kristen says:

    I’ve got nothing. Just sending you my love.

  23. Mom101 says:

    I am so moved by this Susan. You continue to amaze me at every turn. Thank you.

  24. Judy Kelley says:

    Thank you, it matters to me. Much more now after reading this than ever before.

  25. mom of 1 says:

    You are an inspiration.

  26. Beautiful post, thank you. From now on, less awareness and more action. Promise.

  27. […] In the name of awareness « Toddler Planet […]

  28. Susan says:

    This is the most powerful thing I have read in… forever. I am on FB too and have noticed the colors, saw an article explaining what it was about and thought to myself, how ridiculous. I didn’t post those thoughts on FB, I ignored the posts (tried to) but they bothered me. I read your post today and have just posted it on FB with Must Read, and will repost later if it seems no one is reading it. Thank you for your honesty and courage.

  29. Jennifer W. says:

    Your poignant story is a good, human reminder of so many things – thanks for sharing.

    Like any failed communication/PR exercise, when the message, meaning and motivation aren’t aligned, it’s a big #fail. And, as can happen with anything viral, yesterday’s meme-wave mutated into something different than what it was at first.

    But, if the bra-wave is prompting sharing and discussion like this, maybe it’s possible that, through understanding each other, awareness AND action can help raise the bra…? I mean bar.

  30. Steph. says:

    What a wonderful post. I liked it so much, I posted a link to it as my FB status and retweeted it. God bless you and yours and here’s to a clean bill of health in your future.

  31. Lisa says:

    Thank you so much for sharing your experience. I’m so grateful your here to share it with us. I’m sure at least one life will be saved because of the road you’ve traveled. Here’s praying for a cure!

  32. oregoncoastgirl says:

    awesome.

  33. Ximena says:

    Thank you for sharing. I was so moved by your post and courage. I received a message about the facebook bra campaign from my cousin and was so confused – where was the awareness or call to action??? well, you hit the nail on the head, more action please (and in this case a little awareness would be nice – how were ppl even suppose to know that by having the name of a color in your facebook status you were raising awareness of breast cancer?)

  34. ann says:

    I’m not on facebook, but I joke often about having no more boobs after my kids took them from me (breastfeeding)

    I don’t find that joke so funny anymore.

    Thank you so much for sharing this.
    Ann

  35. Ginny says:

    I hear you. The whole thing seemed glib an frivolous. I’m aware, you’re aware, we’re all aware. But. I did a breast self exam after I updated my status. Something I know I should do, but don’t, as often as I should. So I can’t completely write the exercise off.

    I’m glad you’re healthy, and I find your story more inspiring than a facebook meme, that’s for damn sure!!!

  36. Ruth says:

    It’s interesting. When I first found out about the campaign I thought it was misguided because there are many more effective ways of clearly promoting breast cancer awareness (instead of all the mystery), but I did not think about the effects that using a bra as a symbol might have on breast cancer survivors. Thank you for the reminder!

  37. Meg says:

    Thank you for shining a white-hot spotlight on the flip side of this very important coin.

  38. Andrea Owen says:

    Thanks for this. I read the email and didn’t understand how that would help breast cancer awareness, but your post has helped.

  39. the new girl says:

    This is an amazing post.
    Amazing.

  40. Toni Spott says:

    I’ll be perfectly honest and tell you I had no idea. Not a clue. I want to stay that way. But in the meantime I don’t want to be stupid. Thank you for allowing all of us to see this and hear your remarks. You are a very brave woman wether you want to be or not.
    The colors FB has actually turned out to be a really good thing as it brought me to you and my awareness which I will now share w/all my FB friends. Thank You

  41. Ashli says:

    I don’t know you, but I want to thank you for a powerful and amazing post. THIS is breast cancer awareness. I didn’t participate in yesterday’s silliness on Facebook — instead I mocked it with my own silly status update. But I couldn’t think of a way to say that the reason was because the very idea of posting our bra colors mocked actual breast cancer awareness. I will be sharing your blog post on my Facebook and my blog. Thanks. ~Ashli

  42. magpie says:

    Well said, Susan. And I’m linking back to you.

  43. Now THIS – this amazing post – really raises awareness.

    Thank you, as always, for your courage.

  44. Jenny Schell says:

    Didn’t post my “color” on Facebook either, I’m not sure why I didn’t feel right to me… A friend of mine posted your article on Facebook and I read it right away. Very touching. Thank you. Thank you. My dad died from cancer at 54 – he had so much life left in him. You are right – I think everyone is aware, what we need is more action! All the best to you!

  45. J says:

    Thank you so much for posting this. I do not have breast cancer (thankfully) but am all too well aware of it, and the BS that goes along with it. (such as, I was scheduled a mammogram BECAUSE OF A LUMP, and when I got to the appointment, was turned away for “being too young”)
    I posted a FB message yesterday basically mentioning that a status “about awareness” that didn’t actually say anything was pointless, and suggested donations, volunteering and such. Then, to keep it light-hearted I said “Oh, and nothing, because you don’t wear them with pajamas” and I got some NASTY messages. I mean, from people I thought I knew. I was shocked.
    Thank you so much for speaking out!

  46. This is an amazing post, Susan, and should be nominated for a blog award or something! But can I admit something? I’m at a loss. I don’t know how to help or how to raise the call to action! I can check my own breasts and can advise my friends to do the same, but what else can I do?

  47. craig says:

    awesome. I like the detail. Everyone says “breast cancer” but noone says what it is or what it means, the process of recovery. Everyone just stops at cancer. Good job, kid.

  48. Stales says:

    GREAT POST! I had my double mastectomy on Jan 14, 2008. We share alot in common. Thanks for posting this.

  49. elfdream says:

    Thank you. I’m also a survivor and this whole thing leaves a bad taste in my mouth. I know whoever started it meant well but this just isn’t the way. Thank you again.

  50. Theresa says:

    I’m a fellow survivor and I just posted this to facebook as well. VERY well said.

  51. […] take a look at this touching blog post from a woman who debated what to write for her own status. Posted in Social networking, Trends | […]

  52. Histrel says:

    Thank you for a well written and thought provoking post. My mum had a single mastectomy a few years ago followed by reconstruction, I am all too aware of the feelings that surround this issue.

  53. Vodka Logic says:

    Wow I would have never guessed that is how a survivor would feel. Thank you so much for sharing your story.

    I am sure I am not the only one unaware of what awareness does.

  54. Sarah says:

    While I am not a breast cancer survivor, I too felt offended by this meme because it ignores strong people like yourself who have beaten breast cancer. This meme only makes people “aware” that breasts are what need saving, not women’s lives. I am glad you wrote this post and I shared it on Facebook so that it may reach people who gave no thought to what participating in the meme really meant.

  55. Michael Fukushima says:

    Perspective, as the crowd rushes forward. Brilliant, poignant post.

  56. Chandra says:

    Thank you.

  57. Alyssa says:

    Thank you WhyMommy for your candid post. All too often the details of the survivor’s journey get lost.

    As someone who participated, I’m truly sorry for the pain it may have caused you and other survivors. As someone who has thankfully never experienced breast cancer, or any type of cancer I can tell you awareness is an important step to prevention. Last night after posting my bra color, I searched for info on self breast exams as well as info about breast cancer itself.

    I know the word awareness is overused, but truthfully how aware is anybody about anything that doesn’t affect them directly? How much AIDS awareness does anyone have? How much teen pregnancy awareness? Alcoholism? Diabetes? Heart disease? There’s just so many things out there fighting for attention. When something like this comes along and makes people stop to think, even if only for a moment it’s actually amazing that something so simple (though perhaps insensitive) worked.

  58. Lisa says:

    What an amazing post – and thx to @stales for sharing it with your Twitter followers.

    I did participate yesterday and updated my status toward the end of the day. I saw a mixed reaction of people posting the status – some questioned it and then when they learned it was for cancer awareness, they posted. Some posted for fun. I was in the former category but I will be honest, I did not make the link to the lack of call to action. My apologies to anyone I may have offended by participating.

    I am a survivor of melanoma and my mom is facing myelofibrosis, a rare form of cancer. My mom also underwent a bone marrow transplant. At the time of my melanoma in 1991, there was no such thing as social media to help get the word out. With my mom’s illness, ongoing since 2006, blogging, Facebook and Twitter have revolutionized how we get the word out on these diseases. Some will succeed and some will miss the mark. It is my hope that this effort was started with the best of intentions.

    All the best to you and your family.

  59. Katrina says:

    I see no harm in creating awareness about breast cancer. I agree that action is much louder than words… however, I believe awareness is important. Apparently, many health organizations agree as the month of October is dedicated to Breast Cancer Awareness. Should we do away with Breast Cancer Awareness in the month of October as well? I think it’s great that women can support each other just as they do during the Susan Komen Breast Cancer walks and just as they do when they are breast cancer survivors. Many of the women who posted their bra colors may be breast cancer survivors some day if more action isn’t taken.

  60. Jamie says:

    I am a ten year survivor who does not feel left out by this, I do not feel ignored, and I think that it is silly to be offended by it. I refuse to feel sorry for myself because I lost a breast. I think humor is an effective healer. Humor helped me to get through the surgeries, physical therapy, and chemotherapy with my sanity intact. And judging by all of the responses to this meme, it accomplished its goal. It got people talking about breast cancer!

    • B, says:

      I agree with you, especially the last part of your post about humor and about the fact that it did get people talking about breast cancer–proving, I think, that awareness can lead to actions such as talking about BC, doing self-exams, searching the web for more information, scheduling a mammogram or a visit with a doctor, etc. I’m not sure it’s “silly” to be offended–I just feel we have to cut people some slack in almost every encounter–written or face-to-face. The older I get, the better I am at doing that :-) FYI: I am a 16-year BC survivor minus one breast and doing just fine.

  61. @sweetbabboo says:

    Shared this as my status. It will hopefully inspire more action than simply surveying bra colors. Thank you for addressing it in such an honest way.

    -Abby

  62. Your story is both beautiful and heartbreaking, I’ve decided to try and take a little action in this trend and reveal my bra color only if we come together and raise a little money to donate the Susan G. Komen Foundation. It is nice that women are trending awareness, but it has almost become a mockery and missing the intended point. I’m trying to turn this facebook status trend into a little motivation for some action. I will expose what color bra I am wearing if and ONLY if we raise $5,000 for the SGK foundation. I hope it succeeds and people can actually make a difference! Good luck to you and than you for sharing your motivational story. If any one is interested in my project, it can be found at http://www.galliegirl.com

  63. Loose Talk says:

    Thank you for this post. I’ve linked to it through my facebook status.

  64. maresi says:

    Seriously, I kept thinking yesterday that this sharing of bra colors was not only ridiculous in and of itself, but a truly LOUSY way to bring awareness to the issue of breast cancer. As if we don’t know it exists? As if survivors like you aren’t faced with the insanity of merchandising of pink products?

    Plus, all it did was make the men on FB think of nothing other than women (probably not their wives) in their bras all day. Gag.

  65. name says:

    From what I understand this started as a game, and the breast cancer awareness was added later by who knows who thinking it was smart. I didn’t quite get the link between bras and cancer and I can’t really post the newest slogan either (the one about breastfeed so that you can avoid cancer) because there are just too many people who can get hurt with that as well.
    You are right, there is enough awareness. Time for action.

    • sharon says:

      Just read a whole lot of replies to this. Had to quit when i read name’s response. I too thought it was a game. Was sent to me with the intention of oh let’s just bug the guys. Not till much later did I understand it was to raise awareness of breast cancer, and even then did not put 2 and 2 together that women who have had mastectomies do not necessarily need bras of any colour. Stupid me. Having 2 so far healthy breasts, (which will never breast feed a child), i can understand name’s concern about offendin there as well. Sorry I missed the point initially with the bra thing. Takes all kinds of people in the world…point also being that the MEN were not let in on this little joke intially so it had some unfortunate results (webcam jokes and such made in good fun no ill intentions intended from decent friends).
      The internet is a fantastic forum for communication and awareness. It is also open to all forms of abuse. I truly do not think that whoever started this had any ill intentions, but should have stated at the outset that this was to raise awareness for breast cancer. Perhaps i missed that part. My sincere apologies to you for any insults/aggravation/or worry that this has caused you. My sincerest wishes for a sustained recovery. And a warning to everyone (that you all should know by now)..caution with anyting internet. xoxo

  66. Sara says:

    Thanks for posting this! I had a pretty negative visceral reaction to this meme when I first found out what it was all about. This sure solidifies it. Great post.

    P.S. just a bit of commentary on the stats in the your post – I believe lung cancer is the deadliest cancer by far, with prostate cancer ranking as the most common?

  67. Spruce Hill says:

    Very well said Susan! I felt the same way. I did not realize how much it affected me until after I put something on my status. It took me a bit of time to put something down because I did not have one on at the time because they are so uncomfortable for me to wear. I take mine off as soon as I walk in the door. I wish I had put more thought into it before I put my answer in :)

  68. Manic Mommy says:

    Thank you for the crystal clear reminder that most of us have no idea what you’ve gone through. Sympathy is not the same as empathy.

    I supposed I looked at it as “remember to check your boobies”, rather than “think about our sisters who don’t have them anymore”.

  69. Kerosena says:

    I really don’t see anything wrong with this meme. A friend’s message to me on FB reminded me to do my monthly exam. Maybe my message or status post will remind one of my friends to do the same.

    My thought: Not a ‘lousy’ way to bring up awareness. We’re all talking about it, even the younger ones. A male friend even used it to start a discussion about men’s self exams.

    Also, I love this comment from @Jamie: “I am a ten year survivor who does not feel left out by this, I do not feel ignored, and I think that it is silly to be offended by it. I refuse to feel sorry for myself because I lost a breast. I think humor is an effective healer. Humor helped me to get through the surgeries, physical therapy, and chemotherapy with my sanity intact. And judging by all of the responses to this meme, it accomplished its goal. It got people talking about breast cancer!”

  70. Radish says:

    It may not *seem* like it was raising awareness, but it was. You know why? It reminded me to do my self-exam when I was thinking about it in the shower this morning and laughing about how my husband had no idea what was going on.

    Yes, we’re all aware of cancer, and breast cancer specifically, but a little reminder now and then certainly doesn’t hurt. And if it can be done in a playful way, even better.

  71. Mary Lynn says:

    Here’s an idea. So the meme as it stands isn’t effective? Let’s make it more effective then.

    I just posted a colour on my FB status, then mentioned that also I just made a donation to the Canadian Breast Cancer Foundation. I then included a link to the donation page.

    Underneath I said: Let’s raise more than just awareness.

    If even one or two of my friends does the same, then we have a chance of making a real difference.

    I disagree that people are already aware enough. Of course I know about breast cancer, but on a daily basis as I’m running around doing a million things, I really don’t think much about it because I am fortunate enough to have not been impacted by it. Yet.

    I think this meme has actually worked in that it got you to write this post, which was mentioned on Twitter and retweeted by many. We are here talking about the issue. And as a result of your post I just went and made a conation that I might not otherwise have made today.

    The meme is out there anyway, we may as well make it useful, even if it was pretty ineffectual to begin with.

  72. Karen says:

    reading your post, I was saddened that you are so upset about the loss, and not in the gain. I have both breasts, and none to proud of them at 36 they are dd, so I too have issues buying clothes….Cant wear buttons, they gape, nothing too tight or everyone stares and the cost of the bras….dont get me started. I posted my staus and was proud to keep it up to keep up awareness. My famoly is all too aware how cancer affects us. So rejoice in your life, and the fact you dont have to buy bras….And keep posting none, because the disease is real and affects so many, Im glad you shared with us.

  73. Carrie says:

    Hey there. It’s Carrie – from group at Gtown. The one who had rectal cancer. I saw your post on Story Lab and I thought it was you. My comment is a couple above your’s. Thanks for blogging about it!

  74. Hilda Malicki says:

    Thank you !!! Just came from the doctor. She found a lump. My regular scheduled mammo.is being moved up. When ??? I am 69 yrs old. Mom and aunt died of various cancers. Trying to stay as calm as possible. Hoping I do not have to wait too long for appointment. Wait for ordinary yearly mammo:5 mths.
    I am surprised, how many women are putting exams off. do not turn away from reality!! BE AWARE! Men included.
    Have to fig. out to post this site to more people

  75. Jenny says:

    I understand where you are coming from but as an IBC stage IIIc survivor currently having a recurrence to my internal mammary nodes – only 5 months after original treatment finished – I took part in this facebook meme and forwarded onto my family and friends. From my point of view it was about showing that raising awareness or keeping awareness in peoples minds wasn’t always about having to have a pink ribbon on your profile picture or writing seriously – it made my daughters and their friends think about their breasts for a minute and that is not a bad thing. I was wearing a bra with prothesis – I had a single mastectomy and axillary dissection – because I had gone out that day but most of the time when I am at home I am one-boobed no bra person and am comfortable in that that was the only choice I had to have a chance to beat this disease so although I wrote a colour I could have quite easily been write none
    As the first sentence of the message said it was a bit of fun and that was the spirit in which I accepted it and I passed it on in that context as well – I had originally been sent it by another breast cancer survivor who is just out of treatment so not all breast cancer survivors were insulted by this
    While I agree especially for those of us in treatment the causes or cure are the biggest thing, for the general populace awareness is the way to get money and support for research. And I think this message was in the same vein as the bra decorating competitions that raise money for cancer research or the race/walks that encourage you to dress in fairy wings in silly costumes. It is a scary serious disease but it does not mean we can only deal with it in scary serious ways.

  76. Brat says:

    My nephew posted a note on his Wall asking about all the colors he was seeing. An entire dialogue took place on his Wall about breast cancer. In it, he found out from my niece that his grandmother – my mother – who passed away before he was born, died of it. My niece told him that we all need to be aware of what she died of so we can take better care of ourselves.

    My brother applauded the meme on his Wall. He thanked the women who were *honoring* his mother by bringing awareness to the disease that took her life. A man came on his Wall and talked about male breast cancer, and a dialogue ensued about the need for men to get checked.

    Those of us who posted our colors, did not do it as some funny game, but I can see how it may have come across the way. The purpose was to honor you, and make sure people are thinking about this disease, getting themselves checked, hopefully donating to the cause. I am so sorry if my participation caused you pain. Just wanted to pass along the good that has come from it.

  77. hilde says:

    “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.”

    Wow, that’s exactly how childless infertile women feel everytime we see something posted on FB about babies, toddlers, and Mommees.

  78. I’m linking to you in all the messages I’m getting about this color “game.” I hadn’t thought of it in this light. Thanks for the illumination.

  79. terri says:

    I want to say thank you for giving me alittle piece of u. They was a great testmony, not a story..this is real…this is life. Positive energy is a must in my world….I pride myself on it.
    Thank you and may God Bless us all…

  80. Melissa says:

    I wrote something to this effect on my FB status and got the tar beat out of me. I watched my grandmother suffer through breast cancer and found this whole thing to be in poor taste. She would have been embarrassed by such attempts at awareness. There was nothing funny about the fact that she couldn’t wear a bra anymore. It was humiliating to her. Thanks for putting it so much better than I was able to. I’m defintiley sharing this for the benefit of those who could use some enlightenment.

  81. Kathi says:

    Thank you for your well written, thought provoking blog post. I’ll be linking it in my fb status.

  82. Megan says:

    I knew the meme was foolish(my argument was that a)it was just an excuse for girls to talk about their boobs in public and b)why do something in the name of “awareness” if no one is even AWARE of what it means) but now that you have uncovered another layer to this whole facade I am even more appalled at it– and moved by your story. I have linked to your post on my FB page in hopes that others will be to. Thank you for sharing your fight against breast cancer with us and for making others be more (and in a better way) aware.

  83. Del says:

    I think what a lot of us need is the awareness of what people who have had masectomies actually go through. Thank you for making me aware of that.

  84. Blabigail says:

    I participated yesterday. While I don’t generally partipate in what feels like mindlesses meme-ing, this one struck me, and I felt compelled to participate. It was a reminder, of sorts.

    Your post is nothing short of wonderful. Thank you for sharing your feelings about the whole thing. I admit to not even thinking about how those who’ve had mastectomies would react. I’m thankful for your candid thoughts. And it isn’t as if breast cancer and mastecomies are all that removed from my life, as my grandmother was a breast cancer survivor who had a double mastectomy.

    But the daily mundane parts of life have a way of lulling us into a sense of forgetfulness. The FB meme-ing thing yesterday — for me — served as a gentle prodding reminder. When was the last time I did a self breast exam? Awareness is not, I think, a bad thing. Not acting on that awareness is. From doing self-examinations to donating to cancer research, the actions that result from our awareness are hugely important.

    No, awareness is not a bad thing. But it shouldn’t — can’t — be the ONLY thing.

    • Cora says:

      I have to agree with Blabigail. I love what this post brought forth and I do believe there is a need for action. However, until receiving this meme (which I didn’t repost, but read) I had not thought about doing a self-breast exam since they told us about it in PE my freshman year of college. Action is great, but awareness is necessary, too. It may seem to people who have lost someone to breast cancer or who has had breast cancer that everyone is “aware,” but that’s just not the case. We could probably all use a bit of a fire lit under us on this issue. After all, isn’t this post just another form of raising awareness?

  85. […] I wasn’t offended Jump to Comments this was my response/comment to someone elses (an IBC survivors) blog post about the facebook bra colour message that went round and thought I would share my thoughts here as well. You can read her original post here […]

  86. Susan…

    I hear you and heart you.

    On kirtsy, though, another woman I like immensely commented while linking this post that she now feels like a total asshole for posting her bra color yesterday. I see more similar sentiments in this chain of comments. I see women feeling shamed for having played along and I see women saying shame for having played along.

    I played along. And I don’t feel like an asshole. I don’t think I should. I wasn’t finding an excuse to talk about my boobs (that is SO not me). And I rarely play along with memes or armchair social justice (also SO not me). When women asked “what’s up” I replied with “it’s to check our bra color and in doing so, to remember to do regular self-exams of our breasts.” “Oh!” they all replied, some answering that they were glad for the reminder. if that’s off from the original PSA meme, eh, so be it. i think that’s a better message and it worked.

    Suebob made such an awesome point in her comment at BlogHer. To paraphrase it very loosely, she said sometimes awareness raising has unintended consequence. MS bike fundraisers aren’t intended to make MS diagnosed people feel badly about their impaired mobility.

    You know, in a way, your post is kind of the other side of the coin from the meme.

    I guess there is no need to make people feel like assholes on either side.

    I’m so pleased that people like you share your experiences, and your POV. You SAVE LIVES. I’m so glad you work towards a cure and better diagnosis and all of that action you take. YOU SAVE LIVES!!

    I’m so pleased that yesterday so many women cared enough to take a second to share a color to raise awareness.

    Now it’s up to us to convert these people we already know are interested to action.

    What a wonderful, wonderful thing this is, and can be. So much opportunity!!

    We’re all great and when we do things from the heart, the thought counts.

    • dianne says:

      Julie,

      Thank you for writing exactly what I was wanting to say. Although I absolutely see Susan’s point, I don’t want to feel ashamed for wholeheartedly doing something in the name of supporting our sisters, mothers, friends, etc. Perhaps we need less awareness, but you can never have enough support. Anf frankly, I am one who is rather neglectfull when it come to breast examination, and yesterday’s action was actually a good reminder – I checked myself for the first time in months. What if I had found a lunp? That would mean that the campaign had been effective. Silly? I’m not so sure.

      Susan, thank you for writing this post and allowing others a glimpse into your experience.

      • Julie says:

        I’m so glad, thanks. I never ever want to perpetuate the feeling bad. I definitely want everyone to get due credit for caring and meaning well. We ALL gain so much from Susan’s honest eloquence, especially in this post. The POV beyond my experience is so important. By the same token, we all come from such different place, with different goals that what feels like honest and true good deed to one may come across as misguided to another. I do think intent matters. I think all the women I know participated yesterday because they cared. They did so knowingly, because they asked me about it, skeptical about joining in. But to raise awareness about the need for self-exams to fight breast cancer? Absolutely! I’m so glad I understand better how it affected everyone, from remembering to do the exam to feeling hurt by the meme. I know right now I’m trying to think of how to turn this wave of support and awareness into the next step. Hopefully it will come soon but preferably not at 3 am as these things usually do lol! Or maybe one of these other awesome women will think of something. In the meantime Susan posted some important ACS links — thanks again Susan for the links and all you do, including posts like this, and thanks to so many wonderful women for caring so much, in whatever way!

    • marty says:

      I agree with you that no one needs to feel like an asshole. In fact, after my status update suggesting that chatting about your bra could be an insensitive way to raise awareness about breast cancer, I found myself backtracking to my friends to try and make them realize that I didn’t think they were bad people for participating.

      I just think that raising awareness needs to be done with the survivors in mind first. A bike race for MS is raising money, not just awareness. A bra meme is just raising, well, let’s ask the men what it raised.

      To me, it seemed like raising awareness for quadriplegics by posting what size running shoe you wear.

      However, for it to be truly insensitive, there has to be intent behind it, and I think the intent was probably pure – I don’t think anyone meant to be insensitive. I think it just needed to be pointed out that it could come across that way.

      We all have our own triggers, you know? This one seems an obvious one for breast cancer survivors.

      • Julie says:

        I guess it depends on how you view it. Like I said above, what feels true and honest to one can seem misguided to another — as the wide range of comments here prove. I see little positive outcome from criticizing people who intended support and meant well. It’s a burn that can cause people to shy from what they now view as a stove. How much more effective might it be to instead propose another action, like some commenters did? Eg, “Mine is green with Benjamin Franklin on it and I sent it straight to ACS for the new education program!” or “I lit mine on fire…to liberate and celebrate, and then I joined ACS More Birthdays.” or if we dislike bra talk or implied bra talk, offer a great alternative.

  87. Sam says:

    Thank you so much for this — I hope you don’t mind but I posted it on my FB page, too. It’s so important for people to focus on what’s real. Thank you.

  88. Saadia says:

    Thank you for this. We need to take more action and action that makes a difference. May God continue to give you strength…

  89. Heather says:

    This is what I posted on facebook: “Heather is thinking that posting your bra color on facebook really doesn’t draw awareness for breast cancer. It just makes it easier for guys to imagine you in nothing except a bra.”

    If people really wanted to help, they would do more than just post their bra color on a website. I’m really sorry for everything you had to go through. I’ve never had to go through it myself (and hopefully never will), but I really admire the strength that people like you have shown. Good luck with everything!

  90. Thank you for your brave, brave post. I, too, had a double mastectomy and battled the breast cancer beast.

    I was actually just in the middle of a debate on Facebook asking the question, “Is this true awareness? Where is the message? The education? The call to action?”

    Thank you for this amazing post that stated my arguments so much more effectively than I could have! I will surely pass around this link to help spread TRUE awarness and enlightenment.

  91. Alison says:

    I played along. I have one breast, and one fabulously reconstructed breat. I *have* to wear a bra, or pseudo-boob wants to hang off to the side.

    I didn’t know the purpose behind the meme, by the time it got to me, it was just a piece of fun. And 27 months post surgery, it felt really good to be able to take part in a bit of fun about bras.

    I’m so sorry that not everyone could take part, but I’m also very sorry that people feel bad for having taken part. Especially if, like me, you didn’t know there was any motive other than fun. Some of us lose breasts, some of us lose both our breasts, and that’s a really really shitty thing, but breasts can, and should, still be a source of fun. I’ll just remember my laughing babies when they were breastfed for a while.

    • sharon says:

      ^ 5 to you Alison, your outlook is refreshing, recovered and real. I didn’t know either and participated. Felt bad tonight after reading all this, but I shouldn’t. FB and Twitter and all the other social outlets are a wonderful thing. But. Love your spirit!! Ty for taking my guilt away… I said my bra was ivory…lol sorta like my skin colour ….

  92. Christine says:

    One of my friends posted this on facebook, after I had started to participate. I’m so sorry, truly. I honestly did not know what a double-mastectomy actually meant! You are a princess who has a better understanding of those who have other survivors such as yourself. Breasts (or lack of) don’t make you any less of one. God bless you and I admire your boldness in standing up on this issue.

  93. Gina says:

    Thank you for your candid words. My mother is an 11 year survivor of aggressive inflammatory cancer. It was so difficult to watch her go through that pain. I’m so glad that you have survived! You have obviously touch so many lives and I pray that you keep getting the word out!!

  94. Jane Anne says:

    Thank you for this post. Like many others, I am passing on a link to this. Your words are powerful. Your journey is heart-wrenching. I cannot find the words to write in response. Instead, I prayed for you and I will continue.

    Thank you.

  95. I have to laugh when people defend the bra color update as “awareness”. Because if I didn’t laugh at it, Id be crying.

    I’m a young adult cancer patient, advocate, and author (Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s). It means a lot to me that we challenge cancer in an effective, productive manner, with priorities, and hopefully results.

    Everyone needs a little fun and games in life (especially when you’re fighting cancer). And there is no harm in sharing with your friends your bra color. But it is a mistake to think that a cute FB update is going to do anything to help fight cancer. For that we need education, action, legislation, and prioritized research.

    What exactly does a bra color make people aware of? That breast cancer exists? You have to be living under a rock to not know that one already. I think awareness was a noble goal two decades ago when cancer was a whispered word. But the past five years of cause related marketing seems to have reach the goal of “awareness”. Let’s move on.

    Show me a FB campaign that educates women about radiation exposure. Show me an FB campaign that empowers women to effectively communicate with their doctors. Show me a FB campaign that impacts legislation towards affordable healthcare so women can go for yearly gyn exams.

    Fantastic post. I’ll be sure to circulate it widely.

    Best,
    Kairol

    http://everythingchangesbook.com/

  96. Shannon says:

    This is such an eloquent and well-reasoned post. Something in me has always cringed at what is often a “gimmicky” approach to breast cancer awareness. (Pink yogurt lids! Pink pizza boxes!) Fundraising, awareness and education are SO important, but shouldn’t they be directly pointing people to action? I fear that in the efforts to make breast cancer less “shameful” (as I think it may have been in earlier generations), the pendulum has swung over into trying to make it cute. And it’s not cute. It’s brutal and frightening, and women like you who have fought this disease with such courage and vigor deserve our most profound respect, NOT gimmicks.

    (Sorry, that’s been brewing up in me for a while, can you tell? Thank again for such a courageous post.)

  97. Janelle says:

    Such moving words Susan. Thank you for being so open.

  98. Calliope says:

    Hi,

    I also participated in this meme yesterday, but did so with an open heart and a purpose. I have two friends that are battling this horrible disease currently. Both have had double mastectomies. One was diagnosed at 40, the other at 48. I just had my baseline mammogram and got a call back, will be rechecked in 6 months.

    I also think that with the lastest AMA report regarding mammograms and breast self exams, a lot of misguided information has been put out there, especially for younger women. One of my friends would never have known anything was wrong if she hadn’t done a self exam!!! We all need to not only be aware, but be militant in our quest for a cure. I think that the goal of this meme was well intentioned….if it was hurtful or misguided, then that is truly a shame. But, if it reminds us all to do our monthly self exam, schedule that mammogram, donate our money and time to the cause, then it was worth it…got a lot of people talking (and hopefully doing), which is a very, very good thing.

    You are an extrememly brave woman as are the many that posted comments here and, all of the countless women battling cancer worldwide.

    As a mom myself to young kids, my heart goes out to you…stay strong and know that your post has inspired me and many others!!

  99. Lynda says:

    Susan,
    Reading your post has given me an awareness that I never thought about before, and I am so sorry that participating in this brings actual pain to survivors. Of course, never being there, how could I know – but your words have been a great teaching for me, for being naive. I do have much experience with cancer, one of my closest relatives is currently fighting it, I was thinking of her fight only. I am so grateful to hear of success stories such as yours, it brings hope where there seems that there is none. I am still looking for my own personal strength to get through this, I don’t know how someone who is actually experiencing cancer has the strength.

    Thank you for being my teacher.

  100. Steve says:

    I saw this posting from a friend’s facebook status, i am reposting with a shout out to some close to me that have survived Breast Cancer.

  101. Carissa says:

    As a healthcare advocate, this meme frustrates me. As a friend and relative of those who suffer and survive breast cancer, this “campaign” disappoints. But as someone who can and will forever work to make a difference, this whole thing motivates me…to keep up the effort–to step it up, in fact, and to find a way to turn this misdirected energy into positive change. Thank you for telling your personal story and for helping to add fuel to the fire that burns within.

    We’ll continue the discussion on how we can make a difference here: http://bit.ly/906OAk

  102. Thanks for letting us know your story. Everyone has family and friends who have been forced to fight your fight…Tell me what I can do….

  103. Anna says:

    This post was very enlightening and touching. Thank you for sharing your honest and personal thoughts.

  104. Jen says:

    I seriously am tired of seeing people being so offended all the time. It never ceases to amaze me how people can take such innocent, well-intentioned acts and make it personal.

    Who are we to determine that the world doesn’t need any more awareness? Really? So, the awareness meter is all filled up…no more awareness necessary? What a incredibly ignorant and limiting view of the world that is. Unless I am mistaken, no one has had the time to poll the entire world and discover that everyone is completely and fully aware of the breast cancer movement. There are young girls, turning into young women who are probably in need of a little awareness. That is where the seeds of action begin.

    For me, yesterday was a wonderful reminder that I hadn’t done a breast exam in over a year. I needed that reminder and I was appreciative of it. If at least one person did a breast exam yesterday and actually found a lump and made an appointment to get it checked out…then it was a worthy cause. I dare you to say otherwise.

    My friend lost a sister to breast cancer and she posted her bra color and link to the foundation that was started in her name to help fight breast cancer. I also made a promise to my friend to take part in her next fund-raising campaign.

    For me, yesterday was about re-awareness and action.

    As you know, not all awareness campaigns speak the same way to everyone. For those who just participated for the fun of it…I think it means that this campaign wasn’t the one that spoke to their hearts. Maybe the next one will.

  105. Lesley says:

    This is so perfect. I felt so alone and figured I was messed up or had lost my sense of humor. I wanted to type “scar tissue” or “thanks to cancer, I don’t need a bra”, but I didn’t want to come across as hostile! Nobody needs to be made aware anymore. Anyway, reading this has honestly made my day.

  106. ghostie says:

    First of all, let me offer my happiness that you are a survivor, not a victim.

    I participated and passed on the info because I hope that at least one woman was reminded by this to schedule a check up. In our lives as wives, moms, career women, or whatever paths we take, women very often put our loved ones needs ahead of our own. We get… busy. Sometimes so busy that we need that little tap to remind us to take care of ourselves.

    I am truly sorry that some survivors are offended, ticked off, or even just plain hurt by this. I do not for a moment believe that that was the intent. I DO believe with all my heart that the idea is to help prevent MORE women from facing what you have gone through. And I don’t believe that a cancer survivor would begrudge that of any woman.

  107. What an amazing set of comments. I can hear that you really care, and are really trying to do the right thing. I want to let you know here publicly (and I will email you all individually) that you didn’t do the wrong thing — and there should be no shame here — I just wonder if it’s enough.

    You can fight cancer in many ways. To find out more about your options, visit the ACS Cancer Action Network: http://www.acscan.org/ and consider joining their email list.

  108. Joe Stutler says:

    My mother is a cancer survivor. She had her first mastectomy was when I was in Basic Training in the Army back in early 1983. I remember calling home about a week before graduation and learning that mom wasn’t home, she was in the hospital recovering. She didn’t want to worry me…..yep, that’s my mom.
    I wasn’t able to participate directly yesterday as, being a guy, I don’t wear a bra (nope, don’t really have man-boobs, either…sorry to spoil the joke in advance). Men, too, can get breast cancer, although it is far less common. Mom had it. Her mom died of cancer before I was born. So, even though I’m a guy, I am conscious of the issue, and make sure my health care providers are aware of the potential.
    Not being able to post my bra color, I posted this instead:
    I own a 1951 original, a 1953 reprint, a 1989 printing, AND the Special Edition http://pinkplaidcookbook.com. So, I guess my COOKBOOK is Pink!
    Not only am I aware, but I also did something about it…contributing to cancer research, etc, and supporting pink causes.
    My $0.02. Best!

  109. I don’t know why but it just didn’t seem right to me to play along on FB. I just couldn’t do it. Maybe because I’m with you about ending awareness in favor of action but still don’t know quite what to say.

    And by the way, you and the boys are welcome to come to the pool with us anytime you’d like. We’d love to have you as our guests!

  110. Bon says:

    something about the “just for the girls” nature of the meme made me feel it was as much about exclusion – and conversely – titillation of the men who were supposed to be figuring it out. which is not to say men don’t need breast cancer awareness, as Joe points out above. but i couldn’t figure out who it was supposed to help. and then you tweeted, and i knew who it was hurting.

    you’re allowed that, you know. that hurt. sorry you – and so many of your friends here – end up feeling like simple honesty makes you look sour or like a poor sport. it doesn’t, not at all. your comments and realities end up being the real awareness raising, frankly. but that should not have to be your burden.

    xo

  111. jodifur says:

    Wow, what a post. I’m not on facebook so I never saw the meme but wow, this post just speaks volumes.

  112. jodi says:

    Just saw your note (about feeling like crap) on twitter – I think this was an excellent post…I was very glad to have the opportunity to read it when Shannon (rocksinmydryer) tweeted it earlier.

    I think it’s important to hear the story of a cancer survivor…I saw the meme yesterday and didn’t participate simply because that’s a little too personal for me, however never in a million years would I have thought that a simple act of intended support could have potentially been so hurtful…and that’s why your post was so important…we all only know the shoes we walk in…hearing the perspective of others helps us to be better people & to grow…

    Thank you for sharing your heart – I was touched and blessed!

  113. JeninCanada says:

    Thank you for sharing your words; I have shared your post widely in the hopes that your story will have others think twice about THEIR words and especially their actions. My grandmother currently has breast cancer in both breasts and is not persuing any treatments. She’d already beaten cancer once, back in her 70s. She is now 92. There’s a long road ahead for all of us.

  114. this is my first time visiting your site, not even sure how I got here. You are amazing. I’ll be back.

  115. Niksmom says:

    Susan, thank you for sharing your personal experience with both your cancer experience and your feelings about awareness. I so admire your courage and your fierce determination to keep other women from going through what you and your family have been through.

    To the people who either felt shamed or angry at Susan’s blog post, all I can say is that you aren’t walking in HER shoes though you may be or have been on a similar journey. Her feelings are just as valid as anyone else’s. It’s kind of like being a parent to a child with special needs; there are many similarities in our stories but our personal experiences are just that. It’s in the sharing and being willing to listen and find lessons and gifts that we grow and change the world—and each other.

    I’ve never met Susan but I can tell you, sincerely, she has changed my life.

  116. Pgoodness says:

    This made me cry. I’m so sorry you don’t have your breasts, but so glad you’re ok. And I agree, awareness is there…we need a cure. Xo. I didn’t really get the bra color meme, and still
    don’t get how the color of a bra raises awareness for anything more than bra colors.

    • Jen says:

      I explained in my reply above how this campaign led to a personal re-awareness, which then led to action. The purpose was to check your bra color and do a self-breast exam, too. Not all of the messages inviting people to participate had those instructions.

      As for the need for awareness…you can’t have action without awareness. And, despite what so many of you seem to think, not everyone is fully aware. The need for awareness NEVER ends.

  117. t says:

    although i did not fully participate i loved seeing everything that came from the “game”. . .
    i saw many friends, both male and female, decide to donate because of this. . .if they had not talked about and found out about what all the colors meant i believe this would not have happened.

    I also saw a young generation of girls have a deep conversation about this. . .they wanted to know why all the colours. . .this opened up lots of greatness and awareness for young teenage girls. . .that is great if you ask me. . .

    i am sorry for what has happened to you, but don’t you think it is better to be able to tell your children about losing your breasts then having someone tell your children that you are gone?

    so many of us have been effected by this horrible disease in one form or another and i can not see one bit wrong with awareness. . .without awareness there will be no action. . .and without awareness for younger generations we take a thousand steps back. . .hopefully from awareness even one can be saved and i believe that is well worth it!

    i feel for you being offended by this but seeing so much good come from it i am glad it has happened!

  118. Anne Rogers says:

    Amazing post.

    It took me a while to figure out what was going on, and longer to find out why.

    Then I was left wondering how many knew what the “game” really was and if they did, how much thought they had given it.

    I’m choosing not to “play”, I don’t think it’s increasing awareness and even if it did, is it increasing awareness in a sensitive, thoughtful way? If I do announce the colour of my bra on facebook, what does that say to my male friends?

    • andrew says:

      thank you. for that last sentence. i seem to be taking endless amounts of flack from my female friends for expressing exactly that sentiment. i pointed out that by telling me your bra color, you not only put the image of your bust shirtless in my mind, but in fact perpetuate the type of culture that makes guys think of women in an objective, dishonorable, disrespectful way. then, the same of my friends write a status a few hours later asking “why are there no good guys left?” because you made them think about boobs too much and now they’re sleezeballs!

      thats what it says to your male friends.

      • Karen says:

        Aside from all the other issues raised, do you think that if someone started a meme in support of prostate cancer and asked men to post “boxer” or “brief” – and the color, that women would then start to picture the respondents in their underwear? Puhleez!!!

  119. Caryn says:

    Wonderful post, thank you for the reminder and inspiration.

  120. Tavi Greiner says:

    I, too, am a cancer survivor, though it was Level 4 malignant melanoma, not breast cancer, that nearly took my life. I was given my “bad news” just one-year after the birth of my first child – a child who took three pregnancies to finally be in my arms. Needless to say, I was devastated to think that I would be leaving my long-awaited child motherless.

    Any and all efforts to raise awareness about any and all cancer is a good thing. Somewhere, there will be at least 1 person who is saved by the effort, no matter how frivolous that effort may seem. It was the coincidental reading of a letter-to-the-editor, written by a grieving husband, that saved my life – and he doesn’t even know it. The mere reading of his letter in a Time magazine was completely random – two minutes in the lobby of a financial office while waiting for a friend.

    No matter WHAT part of our body it invades, no matter WHAT name we give it, cancer is cancer. Beating it often requires a tremendous fight, and surviving it can leave us feeling less than what we once were. Alive, yes, but not the same. And for many us, just beating it is not enough. We live every day with the possibility that the cancer will return, and with a vengeance.

    Whether we lose part of an arm, half a face, a breast, a testicle – it is a traumatic experience and we should remember that ALL cancer survivors have shared the same fight to live. Likewise, we must remember that ANY awareness – a game, a letter, a sign, a major campaign – has the potential to save a life. And that is the whole point.

    • robyn says:

      tavi you say it so well. cancer hits any part of the body – mother in law lost her lower leg to cancer 40 plus years ago, my father died (20/12/09) from a heart attack but had cancer in his brain/lungs from melanomas he has had removed for about 30-40 years. mother has also had face cancers removed. my hubby had a melanoma removed from his back – didn’t grow enough to reach a stage 1 – he was very lucky. i had to have a d and c and was petrified i was going to be told they found cancer of the utarus/cervix – fortunately it was neither. know of a man who had breast cancer and two friends last year went through breast cancer treatment. it does not discriminate against anyone – sex, age, type, treatments.

      robyn

  121. Dawn says:

    I thought the meme was kinda dumb … then people started to post actual cancer facts … and then I came here to look for your ‘doesn’t have to be a lump’ manifesto … and here you are.

  122. sarah reinbolt says:

    i’m so glad you wrote this. it is sooo well written and speaks to thoughts i suspected from a survivor such as yourself. and your friend who said, ‘We need a little more action, not awareness’ is SPOT on! hugs to you. sarah.

  123. monica Campos says:

    Seeing everybody post their comments yesterday didnt offend me. i was actually very happy to see everyones respose . Yes i only have one breast so i dont wear a bra either. yes i get jealous at the fact i can not go shopping for cute little bras and underware that match. even shopping for a shirt can get very emotional because my chest is uneven. But you see I am alive and that is what is important to me. I am alive to spread my message. We must be very aware of breast cancer. it happened to me at 26. I had no family history. I will carry my scar forever but its because of my great friends and family that i keep going. I am sorry a facebook post of someones bra color doesnt rip off my scar. looking into the mirror everyday before i take a shower does not either. i love my body and am amazed every time i look in the mirror. it makes me very unique. it makes me monica. it makes me a warrior.

    So what ever woman reads this tonight. You cant take anything for granted. But you can be thankful for what you have. I have an amazing husband, 3 wonderful boys and wonderful family and friends. Keep spreading the word and someday there WILL be a cure.

  124. Christy M says:

    Hi Susan – I just wanted to apologize for joining the ranks of ignorant ladies who posted their bra colors yesterday – I thought it was cute and funny and harmless – now I see that there was a lot I didn’t take into account and I’m sorry for my part in any hurt or painful reminding this might have caused you or anyone else who has been through something similar. And thank you for sharing your story and reminding me that I can’t take even my bra for granted.

  125. kailey says:

    hi!
    please know that there are various locations that supply mastectomy product (silicone prosthesis and beautiful mastectomy bra’s) that you will love. check in your yellow pages or online to find a mastectomy boutique.

  126. Gunfighter says:

    Well done, Susan.

    I am the grandson of a cancer/mastectomy survivor… my grandmother had breast cancer and mastectomy the week I got married (she couldn’t come to the wedding), 16 years ago.

    Can I just say that I can’t help but think that calling for action cannot help but bring heightened awareness? The latter must bring about the former.

    I am smiling as I type this, despite the subject matter, because I am remembering the first thing you ever said to me when we met. You remember, don’t you?

    Big hugs,

    Gunfighter Bill

  127. Dawn says:

    Thank you Susan, God Bless.

  128. whymommy says:

    Oh, dear. I wonder if I do remember — let’s see — we met the week before my mastectomy, and I was feeling a little punchy, at a blogger event where I met so many blogfriends for the first time. I was bald, and self-conscious, and worried about not measuring up to all the cute bloggers who I read everyday. Oh, dear. Yeah, I think I do remember. :-)

    By the way, here’s another idea for action, brought to us by D’Lyn, who writes all year long about doing the 3-Day Walk in honor of a close friend. Check her out at http://everyonedeservesalifetime.blogspot.com.

    A woman named Rosie just wrote this amazing post: http://rosiemaynard.blogspot.com/2010/01/bras-are-for-people-with-breasts.html.

    And check out this opinion piece from Chris Reed, a man who is not unfamiliar with breast cancer: http://bareblackmountain.blogspot.com/2010/01/bra-beating-message.html.

    The women at Wego Health are talking too: http://community.wegohealth.com/group/breastcancer/forum/topics/its-ok-breast-cancer-is-a.

    Let’s turn this into action!

  129. Clare Kumar says:

    It got people thinking, talking and hopefully doing.

  130. ieie Hoo says:

    Hi Susan, I took into concern about the breast cancer issue too. Just a couple of months ago, I found something funny in my left breast that I fear to be a breast cancer. At the end, after mammography and core biopsy, they found 3 more in my right breast. However, thanks God they are only Fibroadenoma and its not malignan too. I get through a surgery to remove them just last month. Although its only a small surgery and what I gone through is nothing if compared to you, I have felt the fear when I found it for the first time….
    And afterwards, I urged all my friends to be aware of their own body. Some of them are afraid in the process of mammogram, I told them not to, for their own sake. And some of my friends are more concern about their own body now…
    When I got through surgery, my friends and family support help me pass my fear… And I think with you it is a lot more hard and a lot more important…
    Thank you for sharing this, I am one of the people having fun in the colour game and I found pro and contra amongst my friends also…
    And I found out that most of my male friends are supportif too. They don’t think differently about this… Lucky me to have such wonderful friends and I think you have too… ^_^
    Anyway, we, woman are in this together…
    and I’m glad that my friend post this for us… I will be glad if we can be friend too…
    Best regards from Hong Kong
    ieie Hoo

  131. Melissa says:

    I’m definately sorry you see the postings as a bad thing. I honestly saw it as an opportunity to remind all of us that it is real yet, in a lighter way of viewing things. How are we as people supposed to make it through the “bad” in life if we don’t find a lighter, maybe if i dare say ..fun ,way to cope with the realities of all of our lives.
    It’s not just you that’s been threatened by this, it’s lots of people. Maybe, others have their own way of putting it across to others. Posting colors or no colors of our bras is not to offend anyone, not at all. Just trying to make things a little more bareable.
    Hopefully, some will try to connect with what I’m saying and understand it’s okay to make light of a horrible siuation. For those of you who don’t ,that’s okay I have that one day you’ll understand.

  132. wow. Even though there is so much awareness going on…I don’t feel very enlightened. This post helped change that.

    Good luck and stay strong!

  133. Zara Zaffar says:

    Thank you Susan, God Bless.

  134. […] take a few minutes to read In the name of awareness by Susan Niebur, by the way, if you have not already done so — you’ll find it posted in a few […]

  135. Kay says:

    WOW. I’m pretty sure the FB posts were not to exclude breast cancer survivors, especially a close friend of mine who thought she was in remission from breast cancer is still under going treatment, played along and thought it was cute. Humor and levity are some peopl’s way of dealing with a bad situation. i lost my husband to suicide in April and now if something falls I blame it on his ghost. Just a little something to take the sting out. If it bothers you so much.. DON”T LOOK!!! I mean honestly, it’s sounds like you’ve been through enough and you’re going to let a FB post irk you enough for this. Well your guilt trip won’t work here. Enjoy what you have left and quit fussing about stuff that doesn’t even matter…talk about wasting the time you have left…..you probably should have spent the time it took you to type this attention getter with your family doing something actually worth while.

    • Julie says:

      Susan does a lot of active and worthwhile things, including but not limited to volunteering for ACS, being a dedicated mom, working hard for women in science, and sharing herself and her views online to enlighten us and educate us. I don’t think you should feel bad about the meme either — I thought it was a good thing. I do think Susan deserves kindness, respect, admiration and appreciation, too.

  136. Melissa Krodel says:

    Wow – you know you would think that since I have had a best and Aunt go through breast cancer I would have been more aware of what I was doing when I replied to that ‘awareness” campaign on facebook. You are so correct in saying enough is enough – we all are AWARE of this horrific disease – it’s time to take ACTION! You are an inspiration to everyone – as is all women who have been fought the fight and won! GOD BLESS YOU and THANK YOU!!!

  137. andrew says:

    wow. i’m so sorry you had to go through that. i mean, chances are my apology won’t mean much to you, seeing as you are strong enough without it to post this online for all to read. to share your hurts. the part about princess cut shirts made me tear up. (oh, by the way, i’m a guy.) maybe it doesn’t help that i’m listening to sigur ros right now, so anything i read is epic, but seriously, thank you for your post. it has changed my perspective on PSAs like this. i thinkn they need to be announced. but perhaps in a way that will be found edifying to those the affected by the very thing it is trying to prevent. i hope that somehow you know that your struggles, and your sharing has helped to make the world better. i know i will never look at any sort of awareness campaign without thinking of the pain suffered by those who are all together unaware. thank you. thank you sincerely, from the depths of my heart.

  138. kris says:

    That has to be one of the most intereting bits of blog I have read in a long time..and I read many blogs. My gma died of breast cancer, my mum just had both of hers removed this last month. I posted a color because it amused me. (What a silly way to get people talking about breast cancer) And it WAS. Oddly enough, November is Breast Cancer Awareness month, there are many days devoted to being brave enough to wear pink, but this world wide color splash has put breast cancer right into the fore front of January. It is an excellant way to start a new year. I am sorry for the people who were offended, but am glad for the people who are talking and sharing and celebrating being alive. God bless those who have battled cancer and God bless those who battle with them and God bless those who are willing to talk about it.

  139. MC says:

    Experts, (See Brenner and Kalina quotes in article,) fear BRCA1, BRCA2 women, pregnant women, children, and other radiosensitive adults at risk from airport whole body scans

    http://preview.tinyurl.com/y9s8ybw

    American College of Radiology

  140. Karen says:

    I admire you for your courage and perseverance in the face of this devastating disease. I am a PT and have worked at a cancer specialty hospital, so I am well aware of the myriad issues surrounding breast cancer. I have had a scare myself: I found a lump in my right breast and had a mammogram within the week followed by a needle-aspiration biopsy. It turned out to be only a cyst which, incidentally, was right in the spot where I was badly bruised by the chest strap of a seat belt in a car accident. (Author’s message: ladies, get a pad – they sell as “shoulder cushions” – that wraps over the strap so it will be cushioned for just such an event!)

    Anyway, I’m so sorry you were upset by the meme – which was started to raise awareness – not that women aren’t aware, they just don’t think about it on a daily basis as those who have/have had breast cancer must. The daily posting is meant to make women THINK about the issue – and to act: to schedule that mammogram, to perform self exams, to speak about it with their friends who are not on FB. Giving and raising money for research isn’t enough: all the money in the world won’t help solve the problem if women don’t act to help themselves. There are plenty of women out there who know they might be at high risk because close family members have had breast and/or ovarian cancer (yes, there is a link), and they still refuse to have the genetic testing done that would help them (and their daughters) make good medical decisions in the future.

  141. Linda says:

    Thank you for sharing your story. My grandmother also went through a double mastectomy and was flat-chested all the time I was growing up. I never thought much about it and it seemed to never bother her. Thank you for opening our eyes to what goes on in a woman’s heart after this surgery.

    Having lost my dad to esophageal cancer eight months ago today (on my daughter’s birthday), my feelings about cancer are still fresh and raw from a caregiver’s point of view. Thanks again for sharing.

  142. […] it turns out to be somewhat controversial. Here are two articles with lots of comments pro and con. Feel free to post your opinions here or there. .adHeadline […]

  143. rajveerhappy says:

    thanx a lot for posting this……………….

  144. Alice says:

    You are as much a woman, as much a scientist, and as much a mother as you were before this all happened to you. The shape of your body has nothing to do with it. I mean this to be supportive.

    Besides, your chromosomes matter more. :)

  145. DotBlogger says:

    This is a beautiful post and an excellent view on the FB game. I posted one, too. A little different, and someone linked your blog in the comments. Thank you for bringing a whole new way to look at it for me.

  146. adr says:

    i cried reading this..not to for sympathy,but at your journey. but i must say, although its a tough road, the “game” as you called it, was very serious, as i posted my bra color, i remembered to examine my breasts last night in the shower. myself, i have pseudotumor cerebri (idiopathic and no cure..) swollen lymph nodwes for no apparent reason,ands painful at that,however, i do not disdainfully look at people with headaches as just “aware” of what i go through. we all know that it’s about a cure. however, mind you..everyone was just trying to spark an interest. i have a friend who never saw a gynecologist until she was nearly 30. i am glad you are a survivor to tell your story, its inspiring.nonetheless, lighten up on people who were trying to pass it along. no one has walked in your shoes, we are all still learning some painful lessons, might it be cancer, or some shadow of a disease no one can explain. remember, everyone is fighting some sort of battle. good luck and good health to you.

  147. Susan says:

    Thank you for moving the conversation in such a relevant direction and for bravely sharing your personal experiences. I read through your entry after a friend posted it on Facebook, have shared it with my friends and plan to bookmark your site. I’m a mom with three kids, a daughter who lost her mom to breast cancer when I was 14 and a journalist. For what it is worth, I was really impressed by your writing.
    Best,
    Susan

  148. Dave says:

    I will probably anger a lot of folks with this, but I’d like to say that as an “awareness” activity, it looked rather useless since it did not include any explanation. I’d presume a number of people (particularly the guys) posted a color without even knowing that it was supposed to be the bra color much less that it was supposed to be breast cancer awareness raising. When I first started seeing what looked like random colors being posted , I had an urge to post a random color too. I didn’t. I’ve lost a number of family and friends to cancers, breast and others. My dad died of prostate cancer, my wife died from thyroid cancer after a 16 year fight.

    Might I suggest a modified meme that might actually make a difference? It’s not much harder, participants post three things, short explanation, a color, and a number. The color is the background color of the check, the number is the number of zeros between the leftmost digit and the decimal point of the amount.

    I’ll start. For 1st quarter 2010:
    research type; check color; # of zeros between leftmost digit & decimal point
    ———————————————-
    breast cancer research: checkered blue, 3
    thyroid cancer research: checkered blue, 3
    prostate cancer research: checkered blue, 3

  149. 强剑辉 says:

    你很勇敢!支持你!!!
    You are very brave

  150. fukatasan says:

    I aplaud you; thanks for telling us how you and survivors alike feel and what you deal with in the aftermath of beating cancer!
    I recently had a friend diagnosed with breast cancer who just finished chemo. She’s lost all her hair and is trying to push through it and work and live life normally.
    This post was an eye opener to know what she feels that she doesn’t let other know. Thank you & keep fighting because life is beautiful :)

  151. Sam says:

    Thank you for posting this… it really made me think that perhaps the small things that people do that they think may help, actually does nothing at all but bring the hurtful truth to the surface….

    You’re right, the awareness is already there. It’s ingrained in society to the point where its almost overlooked….. what is needed now is action.
    There are very few people that have not known someone affected by breast cancer. If this is the case, why are more people not taking more action…

  152. Ges says:

    Hey!

    Sad truth is… many are not aware. I work in the Games industry and a very young coworker of mine was hit with this at age 25.

    At age 25, I myself never once wasted a thought about cancer and my own GY told me that before you hit 35, you don’t have to worry.

    Sure, it may seem redundant to many; ESPECIALLY in the US. Sadlyit does not help.

    But this did spark things. It made people indeed speak up and connect. I let the girls who wrote me about this know of my young coworker (who triggered an artist collaboration called BeautyfulGrim) and let friends all over know that everyone needs to make sure they keep themselves checked up and safe.

  153. deeminzar says:

    Great article! had a cousin die at the tender age of 14 cause of the aforementioned. please allow me to share this on yor page the is my new project “music is medicine. Thanks in advance.

    http://itunes.apple.com/us/album/el-padrino/id340469154

  154. MKN says:

    Nice.I liked it very much.

  155. Amy@UWM says:

    Wish I had gotten to this post sooner. Of course you know what I’m going to say. Right on!!! It’s time for action, but not just to save lives from breast cancer, but from other cancers too. Women need to be proactive on cervical and colon cancers (get your PAP and colon tests!) and improve their diet and exercise to reduce the risk of many cancers. We really have way more control than we realize. Here’s the full 411 from ACS http://bit.ly/6h68UV.

    Action can also be in the form of advocacy, and making sure our government is doing all it can to fight cancer, including making sure that everyone has access to affordable health care. Encourage everyone reading this to check out what the American Cancer Society Cancer Action Network is doing! http://www.acscan.org/

  156. Jo says:

    Thank you so much for posting this. I’d been having online debates with friends who thought I was being uptight for not liking the bra color meme and encouraging actual action rather than nonsensical b.s. like that. I’ve posted a link to your essay in my FB status this morning and it looks like it’s already making an impact.

    Thank you for sharing your story.

  157. Becki says:

    Susan, I thought this was a really thoughtful, well-written post. What American woman isn’t “aware” of breast cancer? Yet too few of us stopped to think of what it might feel like to live with it or its aftermath. I didn’t post my bra color, but not because I was being particularly sensitive–just because I don’t like being told what to post as my status. I did, however, post a link to this post, and I see that at least one of my friends has already reposted it. I am glad you took the time to share your thoughts on this matter. Thank you.

  158. Becki says:

    Make that two friends.

  159. Gil says:

    First and foremost, let me applaud you for your strength of heart and conviction. I also wish to say that my thoughts go to you for having survived this – I lost my good friend Katharine in college at 22 to breast cancer and that was my wake-up call. While I may never know or understand truly what you went through, losing someone like that did make me aware of the challenges ahead.

    That being said, I wish to now respectfully disagree with you for your taking something that raises awareness of an issue and chastising it and raising your red flag against it. This is meant to make awareness, and even if some say it is nonsensical or silly, awareness is awareness and some may be more aware now than the day before.

    What’s more, it is silly and engaging, and that makes it easier to spread. My friend Katharine would have most certainly APPROVED of this. Not call upon it as trivial or dismissed it as utter nonsense.

    As a marketing tool, this meme was excellent because it required guys to actively go and find the content and then get the explanation as to what was going on. Making a more concerted effort of awareness raising by requiring posters to explain and thus re-enforcing the information.

    What your post sounds like, in my opinion, are the rantings of overzealous liberal feminazis who don’t want anything related to breast cancer awareness to be called “Save the Boobies” or be cute and fun. I remember similar posts by such overzealous feminazis – and again, I knew my friend Katharine and she would have APPROVED of things like this and sayings like “Save the Boobies” or ‘Save the Ta-Tas’ – because she knew that to get engagement, you need a hook and a catch phrase that spreads of its own volition. Just like this meme did.

    While tragic for the survivors who cannot participate, this meme does provide an opportunity for those to raise their own awareness and say none and state why and say how long they have dealt with it and to champion the cause of testing and so forth.

    Thank you, Susan, for ruining something fun and engaging for many by blasting away at a meme that does a great job of raising awareness.

  160. robyn says:

    i don’t know what to write. this is an eyeopening blog – cancer awareness is meant to be strong but this makes me question is it at all – my dad had melanoma and 4 years later he had a brain tumour removed and there were growths in both lungs. he died of a massive heart attack on 20/12/09 – almost finished the radium on his brain and was getting ready to discuss the chemo option the monday after he died.

    i just don’t understand one thing and that is why haven’t you had replacement breasts done? one of my mum’s friends had breast cancer and had to have her breast removed and then was going back in for a new breast. do you wear fakes when you go out? i am not judging you i am just trying to understand why some get replacements/fakes and others don’t.

    stay strong and make us more cancer aware – be it male or female cancers.

    • whymommy says:

      Robyn, I’m responding to most people by email, but I wanted to answer you here. Because my tumor was so large and involved the lymph vessels just under the skin (as all cases of inflammatory breast cancer do), all the affected skin had to be removed. Moving belly skin or butt skin to the breast area was not an option in my case, as it would have covered the cancer that has a very high probability of recurrence. If I had opted to get “replacement breasts,” there would be a larger chance that my oncologist and I could not find a recurrence until it was further along.

      That’s my answer. Not everyone’s answer, to be sure, but that’s mine.

  161. Deboshree says:

    Hey there lady,
    Now ironically a friend of mine has posted this one facebook!
    My mom died of cancer and I’m glad that you have fought it and come out of it.
    Even I was posting the colour but I didn’t know that this was the real cause.
    Hats off to you, my friend.

    Take good care of yourself!
    Deboshree

  162. Sarah says:

    I posted my color. Of course we’re “aware” of breast cancer, but for most of us it sits in the back of our minds. I thought the post was a reminder to do a self check.

    I’m sorry if it hurt you any more than you’ve already hurt. But if it reminds one woman to do her check and she catches something early, isn’t it worth it?

  163. Kabura Zakama says:

    A very beautiful story from a very brave woman!

  164. RT says:

    This is so well written. Thank you for sharing.

  165. Heather says:

    Well put and action is definitely needed. But awareness applies to the generations behind us. I have an 18 year old daughter. I can guarantee you the last thing on her mind is regular self breast examination. So if playing a cute Facebook game gets her to at least think about her breasts in any other way than “how can I make them look in a pushup bra?”, then the game should be played.

    By the by, my paternal grandmother died from breast cancer.

  166. Janice says:

    Powerful, powerful story. I won’t even try to understand or feel what you had to go through, and I can only say that you are a much stronger woman than I am. However, I must respectfully disagree on a point or two.

    This person, whoever started the meme, what if (for ease, let’s assume it’s a she) she is also a breast cancer survivor? Sometimes words are more powerful than actions. Awareness CAUSES action. I know that when I saw the inbox e-mail telling me what to do that it made me think about the cancer, although I did not participate in it–mainly because I am too shy; why would I tell people my bra color, haha?

    I understand that you know that this meme was most likely started with good intentions, but by sending it out, this person made (and I’m estimating) hundreds, possibly thousands of people–men and women–think about a disease that kills not only lives, but livelihoods and families.

    And sometimes a thought is all that’s needed to spark the flame.

  167. Heather says:

    P.S. For those of you who didn’t understand the game, particularly the males, the “rules” of the game were sent around via private message. At least that was how I got them. And it did make me think of my own breasts and how much I take them for granted.

    Thanks again for your lovely post!

  168. liz says:

    Susan, this email ame from a journalist friend of mine. please consider sharing your voice:
    “Hey Liz, My friend Susan James is a reporter for ABC News and is doing a story on people’s responses to the bra color viral craze. She’s looking to talk to people with an interesting perspective. Want to get in touch with her? Her email is: susandonaldsonjames@gmail.com

  169. Maggie says:

    I found your blog via one of my friends who put this on her twitter. I posted a quote from it on my facebook and linked to your blog.

    I didn’t post a color because it didn’t feel right to me. I couldn’t verbalize why, but it just didn’t feel right. The only thing I could figure is that my grandma, a breast cancer survivor, wouldn’t think this was helping the cause at all. But now, thanks to you, I know why it bothered me. Thanks for posting this and I hope that this trend/meme ends soon.

  170. Dee says:

    I have had several in my family with brest cancer. I am very aware of what you go through. I am extremely sorry that cancer is still taking its toll. This post was never ment to hurt anyone. It was intended for good. Awareness is good. And for those who just did it out of pure fun that is ok too. We are so hung up on not offending that we have lost much, I feel like this is the same as saying do not observe mothers day because I have lost a child or have not been blessed to be a mother. No we can and should be happy for those who are so blessed. And to stop everyone else from that is not right. So go ahead and have some fun and post your color to raise awarness of to just have a little fun it is ok.

  171. Cathy says:

    I too am a survivor. I too had a double mastectomy. But I chose to have reconstructive surgery right away. I took my Victoria’s Secret catalog in with me to the plastic surgeon and showed him the “pair” I wanted. He laughed, but he gave me the most beautiful breasts! Wow, they look even better than the originals. They point north instead of south, they are firm and round. I could almost win a wet t-shirt contest. I’m of the belief that “if life gives you lemons” mentality.

    Susan, though it maybe too late for you to have the tissue expander type of reconstruction that I did,(if you’ve had radiation) you could probably still have a tram flap. I’m afraid your post could frighten women away from doing self exams and seeking an opinion because they don’t want to end up like you, “crying into their pillows”, “no longer a princess.”

    I firmly believe that anything that brings awareness to the issue of breast cancer is good. Even something as silly but as simple as a bra color post on facebook. I feel bad that you are having problems with your image, but maybe it is time to do something about it. Not everyone who has had a mastectomy needs to do this for their own psyche. Many women feel totally comfortable without the reconstruction. But reading your article makes me think you may want to reconsider it. You just need to find a good plastic surgeon. (I had Dr. Paul Petty, Mayo Clinic Rochester, MN)

    I know my breasts are beautiful, and I am proud to post my bra color. I hope someday you can too.

  172. Pam says:

    Thank you. Thank you for perspective and for vulnerability. Appreciate your post.

  173. NaomiJesson says:

    Unfortunately this game has hurt women who have experienced breast cancer by commenting on something that is sensitive to them, bras or lack there of. I hope that the added message about breast cancer was there for a more positive message than to bring about people’s participation. I participate in fundraising and sponsor my friends who participate in the weekend to end cancer, I too have family that has been touched by breast cancer, my Grandmother died of breast cancer before I could even really have any memory of her, and my Aunt is a breast cancer survivor. The message did make me think, have I recently done my own breast exam? I participated in the FB status update and sent it to my women friends, BECAUSE it was for breast cancer. Normally I do not this. I am feeling EXTREMELY bad for not thinking that this may be upsetting women who are breast cancer survivors personally. For that I am TRULY sorry. But it did twinge my thought because sometimes if it hasn’t directly happened to you, as an individual, it is just something that has happened to someone else and is not necessarily in the forefront of your thought. So in some sense it did spark awareness for myself personally, but I will never forget that it has taken away my Grandmother and has caused considerable pain to my Aunt.

  174. Jill says:

    I agree about less awareness and more action, so it was discouraging to me to read this article in the NY Times: http://www.nytimes.com/2009/11/13/health/research/13prevent.html (Medicines to Deter Some Cancer Not Taken). Page 3 is especially troubling. There are some great preventive drugs out there that are getting met with, as one doctor said, “shoulder shrugs and harrumphs.”

    I think we need to start making some noise.

  175. SK says:

    I hope that you live a long and beautiful life. But i disagree with you unfortunately. There is a need for awareness, facebook is a place for young people predominantly and it is important for them to be aware and get checked regularly. Such campaigns help.

  176. planetnomad says:

    Thanks for this! It’s so good to see it from another perspective.
    And I know a 13 y/o girl who was so embarrassed that she couldn’t stand it! Women saying their bra colours! Ew! It made me laugh. I’m glad for her innocence.

  177. Barb says:

    I wrote “nothing” and I have breasts! I just hate wearing a bra in the evening. Most men found that sexy, the kids thought it was gross (haha). There’s nothing to be ashamed of–you could play along.

    I did find the whole thing a bit pointless as it didn’t link or contribute to breast cancer awareness.

    Thanks for sharing your story. You’re beautiful!

  178. BLM says:

    Your post was beautiful. It gave me pause, and reminded me how precious life is. However, let’s not vilify the bra color posters – Those of us who have never gone through breast cancer stand by helplessly watching our sisters, mothers and daughters suffer needlessly and endlessly. Sometimes, a light touch and a way of feeling like you can add something so small can be all we can do that day…even it if doesn’t immediately, tangibly help a survivor. I don’t believe there was ever malice intended – but instead some small way of adding our names to the long list of people who want to see this insidious cancer end. My best wishes to you and your family.,

  179. JessicaAPISS says:

    I just didn’t see the point. As you pointed out, it actually, completely missed the point. That FB post and viral power could have been better used. It moved faster than the 25 Things thing.

  180. Kassiane says:

    Ah, awarenessitis. And the defenders thereof.

    The meme left me profoundly uncomfortable (I don’t have breast cancer, I know a couple survivors), but I live with a couple conditions that are suffering from an overabundance of awareness & a scarcity of people getting it.

    It’s pretty crappy when “awareness” efforts exclude the people who are more than aware, they’re living there.

  181. Persnickety says:

    I appreciate your insight and the sharing of your painful experience in going through and most importantly surviving breast cancer. HOWEVER, I am sure this viral FB “game” is not intended to devalue or demean what you have endured.
    Raising awareness is a GOOD thing. Yes, there REALLY is still a lot of women and PEOPLE who need education on breast exams and cancer esp in light of the recent studies debating the effectiveness of regular mammograms.
    We SHOULD all contribute to ALL forms of cancer research but how many people actually take the initiative and time to follow through on those pledges? Also not everyone can contribute monetarily so stating your bra color may be one way of showing support and saying “go girl”-we ARE in your corner!
    So appreciate the support that other women are trying to give to our SISTERS who have endured breast cancer-not just survivors but family members and esp the ones who have lost the fight. If we vilify each other, we as women will NEVER be taken seriously.

  182. gadelali says:

    Keep the good fight my dear :)

  183. Wendye Roche says:

    I went through a lot too…9 yr suriver..I loved the answer with pockets..wish I would of thought of that ..I just said beige! Yes your life will never be the same but it will be better..If I could have my breasts back I would say No ..because I would not be the person I am today..Don’t get me wrong I miss them everytime I take a shower…But I thank God for what I do have…so lighten up girls and be thankful for what you have !!!

  184. Erin Alanna says:

    Thank you WhyMommy… while I participated in the silliness on facebook part of me felt “off” about it… your post helped me understand why. I think I am going to go learn how to link to your post on my facebook page. Thank you for your bravery. And I think None is a great answer!

  185. omelay says:

    Well written and interesting, especially all the comments.

    I have to speak up, however, on this:”…Aren’t we aware by now, people? … Don’t we know that we need to talk to our doctor about thermography or mammograms? Don’t we know?”

    Wow. What can I say. Health insurance must be nice. For the rest of us, there is awareness, self-checks, and prayers.

    • whymommy says:

      … and activism, letters to Congress, working with cancer societies and organizations to ensure that every woman who needs a mammogram (or other screening tests) can get one. At least, that’s what I do, and I presume you do too?

  186. Farah Mawani says:

    My mother, aunt and cousin have breast cancer and I’m being monitored closely. Thank you for expressing the intensely challenging experience so well. Very inspiring.

  187. Saahil says:

    So well said Ma’m!!! I m so speechless right now. Couldn’t agree with u more.. this is so right..!! def time for action rather than stupid memes.

  188. Susan says:

    I found your blog very powerful. I’ve not yet posted the ‘colour’ mainly because it seems I’m always in pajamas when looking at facebook – however.

    I’m a nurse – I’m aware – But sometimes awareness isn’t enough – your are 100% right – we need action.

    I’ve had discharge from by breasts for the past 6 months and have found a lump recently. I’ve been meaning to make an appointment with my doctor, but am too busy – not for the appointment – but for the process – I’ve done the ultrasounds etc before, and the worry and the fear. The silly colour thing… well – I’m aware yes… but it reminded me daily, and I couldn’t ignore it any longer. The appointment has been made, I’m going to the Doctor tomorrow.

    I can’t help but think if this constant reminder makes a few women check their breasts in the shower after checking their status in the morning.

    If a few women who are more than ‘aware’ they should have that lump they are ‘aware’ of checked out, after being reminded daily with facebook.

    Well – isn’t that worthwhile?

  189. nq says:

    Wonderful post and god bless you. But…there is nothing like TOO much awareness! Especially when campaigns directed towards preventive medicine are NOT getting to the populations that need it the most ::working poor, immigrants, etc:: Yes, action is needed just as much, but creating awareness can’t stop. I hate for people to look so negatively at someone who started this in good faith. How do we know that the person who started this is not going through chemo or a survivor herself?

  190. phinux says:

    I see pink ribbon stuff all the time, and it’s never motivated ME to do a self-exam, go see my doctor or get a mammogram…

    On the other hand, after reading this blog post, I was a LOT more motivated to go get a self-exam card for my shower, something I’m long overdue in acquiring. And I did- not only did I order one for myself, but two for my friends, and then I posted the link to my Facebook account. Took me only a few minutes to place the order, and the order was free. (Though I happily would have paid for it)

    When the meme was circulating Facebook, I wasn’t even wearing a bra because I was home in my PJs, sick with a virus that probably could have been prevented had I gotten my damn flu shot. And I live in Toronto- a city that beats its citizens over the head every winter with “flu prevention” campaigns.

  191. Leesa says:

    I did not like this FB meme thing when I first saw it.. it felt weird to me, my mom passed away for year ago and I miss her madly! I was with her all the way as she lived for 5 years with cancer and there with her when she took her final breaths.. Cancer has touched my life…
    when I saw the FB meme the other day.. It made me mad, sad and then I found the link to your blog from a friend who just had second a bone marrow transplant after her cancer came back… She talked about cancer awareness… I agree… Not in the way that we joke about it lightly and say what color our bra is… I find this “game” very insulting to people who have gone through breast cancer and even their family (like me)…
    Here is my friend’s blog, if you would like to check it out… She’s an inspiration:

    http://ausoleillevant.blogspot.com/

    Thank you for posting this, Susan, and all my best to you!
    Leesa

  192. […] posted at Toddler Planet. If this interests you, check out the comments over there. Quite a variety! Possibly related posts: […]

  193. Karen Bailey says:

    Another survivor posted this on Facebook, and I had to tell you that I am very touched by your words. I am also a breast cancer survivor who has had a bilateral mastectomy. On Thursday night, I felt very alone as I read the status updates and had nothing I could post myself. I ended up posting a comment that I thought the person who thought up this campaign clearly had not considered how left out those of us who could no longer wear bras would feel, and then I was hit with a deluge of comments telling me that I should support this cause because it was promoting awareness, and wondering how I, as a survivor, could be offended by anything that promotes awareness.

    Well, I was offended, and I was sad, too. Sad that even some of my closest friends seemed to think I was being overly sensitive. I ended up deleting my post and the long thread of not-so supportive comments, and I went to be early. Two survivors did take the time to send me messages, though, to tell me they felt the same way, and a couple of others who had participated sent me messages, too, saying they understood. Still, even today, my cousin posted a message, trying to get others to see this point of view, and those who responded to her also did not seem to understand, and only tried to defend the idea that this stunt promoted awareness–but I beg to differ. If someone wants to promote awareness, there are many more effective ways to do that, without discussing the color of one’s undergarments.

  194. Betsy says:

    Susan, thank you for posting this. I, too, am a breast cancer survivor and double mastectomee. (One at a time: once in 1998 and again in 2007, two different cancers. Wish I’d had both breasts removed in 1998; I’d wanted to, but my docs assured me the risk in the remaining breast was minimal. They were wrong.) I also went through extensive treatment both times (surgery, chemo & radiation), although I was fortunate in that the Taxol didn’t affect me as severely as it did you.

    And thank you so much for your beautiful, articulate post. I received several “bra color” memes in my Facebook inbox, and just deleted them without really thinking about why they bothered me a bit. Even had realized why, I couldn’t have written about it with the clarity and perception you did.

    Thank you once again,
    Betsy

  195. I am grateful that I can reach out to women around the world and show my support. It ‘s amazing that no matter where you live, the world is reaching out thanks to word of mouth.
    I don’t think that the colors on FB are important, spreading the word is and it’s a way of reaching out for some who don’t otherwise.
    I can completely understand how it has offended some, but please know that it isn’t to ridicule or misinform. The word needs to get out, just see it that way. I’ve lost family and friends as well and feel your pain, that’s why I’m here writing with helping hands and a caring heart.
    My father has MS and many people don’t even know what it is.
    Sending lots of love to all the beautiful women out there,
    Brigitte

  196. abby stokes says:

    Thank you so much for sharing your story. My eyes are opened a little wider. My list of strong woman who have my respect has grown. Stay well and strong.

  197. Kim Wells says:

    after being linked to your story, I was thinking about this in a whole new way. I received the “meme” without the cancer element. Someone suggested that it was put out as a silly meme first someone else added the cancer thing to it later. I was touched by your story, and yet, I am also “aware” of autism in a way that other people aren’t, and this has now made me think again about the breast cancer story in a different way. So in one sense, the silly meme worked.

    In another, it only alienated those who are TRULY aware. What I suggested to my friends on my feed was maybe now go out and donate the cost of that zebra bra to breast cancer research and we can all see what might happen to the meme.

  198. woodhana says:

    I laid my mom to rest 2yrs ago due to Cancer and a late check up.Thank you – I agree in Action. I was told by a physician a week ago congratulations you are ahead of the curve when I told him I already had a colon check 4yrs ago when I turned 40. Now we are thinking of doing some sort of ScopeFest idea for men in March but, after reading this article I am re-thinking the social media awareness ideology. I saw a great turnout of the color campaign on FB but, have my doubts now. Any suggestions?

  199. Benji says:

    Thank you SO SO Much for sharing this. I’ve never had breast cancer, nor has anyone I know, but what you wrote opened my eyes more than the “game” did.

    Hmm..but had it not been for the game, you wouldn’t have written this entry, and then thousands of people sharing this link around the world wouldn’t have happened. How’s the irony there?

    Thank you again.

  200. BCP says:

    I agree. I wondered how exactly posting a bra colour would raise awareness when I know all my facebook friends know what breast cancer is anyway. It seemed more like a silly game than anything actually useful. A link to a breast cancer donation site along with the colour might have been more useful.

    Also, just a side comment, but even small chested women who never had cancer have the same issues with low cut shirts. I don’t even have cleavage with a push up bra (and actually, push-ups don’t fit right anyway).

  201. lyndsay says:

    This is incredible. Thank you for sharing a perspective that hadn’t come to my mind when I changed my facebook status to get in on this “game”. I wish you all the best, and your words have made me reconsider my participation. You are a beautiful and powerful writer.

  202. Laurie says:

    Thanks for the thoughtful post and for your blog! I respect the different views here. I did very much like your post, and felt very similarly. A dear friend commented, in response to the meme, that stating bra colors to raise awareness of breast cancer was analogous to posting a baby’s name to raise awareness of infertility. At least for some. I don’t know the history behind the meme, but my reaction (also when some dear and caring friends of mine posted their own bra colors) was that the bra-color concept was a very well-intentioned thing that mostly people who have never been diagnosed themselves would participate in. I might have done so myself before I was diagnosed. I agree too with some of the posters who note that lung cancer gets so much less “awareness” campaign-time than breast cancer…and it’s certainly not only and always caused by smoking!!! Well, a fellow late-stage cancer survivor and BRCA-1 mutation carrier thanks you. (I had my ovaries removed due to the BRCA mutation…although ovarian cancer is so often deadly, and less treatable than breast cancer, I sure don’t see many “awareness” campaigns devoted to it!! Hmmmm….could it be because we don’t *see* them, and they’re not ultra-fetishized sex objects?) Thanks again…L

    • whymommy says:

      I wish ovarian, and cervical, and all the other “silent” cancers out there received much more awareness. With real information. And ways that people can make a difference.

      • Laurie says:

        Yes, I think folks can only handle so much at once…it seems to me sometimes that “breast cancer,” for many (and perhaps for companies that make money from products they sell when they donate a portion [often very small!] of the proceeds to research, is an umbrella term that makes people feel “aware” without being overwhelmed by the real facts of cancer. Which, for the general public, maybe is OK…as long as researchers working on treatments and possible cures really understand it, that’s perhaps enough! BUT now that I have re-read your initial post several times, I want to thank you *again*…your post is so well-written and really walks that line between intimacy and distance in an expert way. I also appreciate one very important implication of what you write: you question the assumption, in this age of social networking and internet, that *all* “discussion” is good discussion, and that “awareness” is always good and always means something. Sometimes people should really stop and think, even if (or especially if) they have never been through something like cancer. Thanks again!!!!! Laurie in IL

  203. Tavi Greiner says:

    I’d say, by the number of posts here, that the FB meme was very successful in raising awareness. At very least, it has a lot more people talking today than were yesterday. Kudos to whomever started it!

    For those who were incensed, raising awareness is not about soothing the souls of the survivors – it’s about ensuring that others do not have to face the same fight, the same tragedies.

    For those who think that everyone should already be aware, you’re either terribly selfish or woefully naive. Cancer, in most forms, has been around for centuries – who even knows how long. Just imagine had no one bothered to make the survivors here aware, either because they thought you should already be or because they were concerned their approach might offend some survivor somewhere. Some of us would not be here right now having this discussion.

    I am disappointed that anyone would criticize the FB effort, or suggest that it should have stopped to consider some individual’s feelings. The FB meme has not only raised awareness, it reminded others of their responsibility to self and loved ones, it spawned opportunities for survivors to share their own stories, and most importantly, it put the cancer discussion on the front page of a few newspapers, exactly where it should remain until more cures are found, and more lives can be saved.

    • whymommy says:

      Ouch! I hear what you’re saying, and I’m certainly a fan of awareness myself (As regular readers know, I’ve devoted much of my time over the past several years to raising awareness of the signs of inflammatory breast cancer, the cancer without a lump!) And yet … and yet … would you insist that I remain silent, when I and so many of my sisters were disappointed — or burned with shame — that we could no longer participate in such a silly little game?

      • Tavi Greiner says:

        No, not at all. I think it is important that you share your story. But I also believe that we should never, ever criticize the outreach efforts of others- and we should always remember that raising awareness IS an action in and of itself.

        The FB meme is being criticized as “insensitive”, and yet, it did prompt you to share your story, which in turn has touched many others. It also encouraged tens-of-thousands of people to join the “Susan G. Komen For the Cure” FB group, and I am willing to bet that at least one person will be saved as a result. That one person is worth everything to someone, certainly worth more than our feelings.

        I am not saying we should not continue to mourn our losses, nor that we shouldn’t discuss them – that’s all part of healing and dealing. I am saying that maybe we should not be so sensitive about something that is less about us as individuals and more about ensuring the greater future of others.

        There are so many things to remind us of what we have lost to cancer. I see my scar every single day, and on those few days that I am brave enough to let it be seen by others, I must face the stares of at least one person, and sometimes I must answer the insensitive questions of a stranger. Rather than be angry at the stranger for making me even more self-conscious, I present my scar as proof of life, as a triumph, and I use the moment to raise awareness, because I know that without awareness, action is a moot point.

        I wonder, who should determine the nature of outreach? Should it be you? Are you aware that your post hurt my feelings? It did. But that’s not important to me. What is important, is that we do share our stories, that we raise awareness in any way that we can, and that we do encourage, even insist upon, action.

        (Of course, I trust you realize that my comments are not meant to be combative – they are made with all due respect and in the interest of open discussion.)

        • Bon says:

          Tavi, why is the idea of outreach sacrosanct and beyond criticism? why is stating that some ways of raising awareness are poorly thought out and could be done better being “sensitive”?
          i’d consider that being constructive.

          many people here have offered ideas for both awareness-raising and action, and certainly no one is trying to derail the vital work of awareness-raising. but not all efforts are equal, and i think looking for options that engage people while also NOT invalidating others is always worthwhile, in any cause.

  204. Jorge Salvador says:

    Feliz Natal e prospero Ano Novo.

    1 abraço.

    Jorge Salvador.

    http://jorgesalvador.wordpress.com

  205. #1 Dinosaur says:

    This was my FB response:

    Lucy doesn’t care what color your bra is. If it contains two healthy breasts, consider yourself blessed.

  206. Jessica says:

    I think that you should post Survivor instead of your bra colour. I personally think seeing the people who have survived breast cancer would make me more aware, and turn it into

    Although, I lost my aunt to Breast Cancer, a story a lot like yours. I know her firey personality would have come up with something witty to place in her status on facebook.

    I have a foot long breast cancer ribbon tattoo on the inside of my arm, a daily reminder to take care of my body and a memory for all those who’ve passed. Half of the cost of my tattoo went to the Breast Cancer Society. I didn’t feel it was enough. I still volunteer and do my own things to create awareness.

  207. bequirox says:

    I hop[e this helps. I’ve started a new email chain. Please join in!

    *****

    We all (or at least most of us) saw the color email. Now let’s do something about it. Go give yourself a self-breast exam, and when you’re finished write “Done” in your status.

    Oh, and don’t forget to forward this to all the ladies AND the men. Men get breast cancer, too, you know. My grandpa did.

    And guys, while you’re at it you should probably check your prostate.

    BeQui

    PS You can look up the “How-to’s” online.

  208. Kathie says:

    I had no clue. Thank you for posting this.

  209. Melissa says:

    I needed this perspective. Thank You for sharing your thoughts.

  210. Leesa says:

    Bravo.. Yes… Men DO get breast cancer, too.. Thanks for sharing this..

  211. Jorge Salvador says:

    Feliz Natal e prospero Ano Novo.
    1 abraço.

    Jorge Salvador.

    http://jorgesalvador.wordpress.com

  212. Autumn says:

    Thank you for sharing your story of courage and survival. I still have my breasts, but I faced my own nerve wracking hell when my now 4 yr old son was only 6 weeks old. My son was a high-risk pregnancy, but I sailed through perfectly, complete with a wonderful (if not LONG) 24 hour labor and healthy baby boy. To learn that after all of that, something was wrong with me? I was devastated.

    My postpartum checkup had come back showing signs of HPV, advanced to precancer, which was quickly progressing. My beloved ob/gyn told me that unless we decided on a course of action, the odds were good that I’d have cancer before my son’s 1st birthday. My best option was a LEEP procedure, which meant laser removal of the affected areas of my cervix. My cervix was affected practically at my uterine opening, so I was faced with the very real possibility of my son being an only child. I’d wanted kids my entire life, and was gleefully planning how far apart to space my pregnancies pretty much as soon as I had a due date for my son. I quickly made the choice that my son having his mother was much more important than any sibling or how many kids I’d wanted. I have been keeping this HPV at bay for 3 years now, but every Pap smear sets a fresh wave of fear and anxiety reeling through me. There is no cure for HPV, and I will carry this virus until the day I die. But I am still here, still fighting, and still strong. All it takes is one look at my precious 4 yr old son to know I made the right choice.

    I vote that we, as women, note only tote awareness of breast cancer, but the importance of yearly Pap smears and vaginal exams as well. Sexually active or not, these diseases and viruses are slowly killing us. We must fight back. We must fight strong. We are women. We have faced many an obstacle over the years, and we have always overcome. Let’s overcome all forms of cancer! Fight for cures!

  213. […] 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 […] […]

  214. Anne says:

    I am a breast cancer survivor and I participated on FB. I don’t apologize for that. Others have noted that even though “we” understand what we must do, every day new women reach the age when they should get mammograms and begin self exams. But they don’t, many of them. Even a silly meme can raise their awareness. I am sorry that it hurt you, though. It sounds as if you’ve been through hell and you didn’t need that. Perhaps now you could tell us what action you would like to see and let us all do it to honor you and others who were offended. We’re all in this together.

  215. I never posted my bra color, but I’m posting a link to you on my FB page. So well said, and in a way that doesn’t make anyone feel like a jerk for having played that game.

  216. Awesome!!! That is amazing I new they were bra colors but not the purpose behind it. Your story is truly inspirational everyone has moments where they feel they are left out from the rest of the world Im glad to hear your’s had a happy ending. Even though the meme brought those feelings back your not alone, it’s nothing short from amazing that you survived it and almost everyone has hardships like these so keep on truckin lol and exsisto validus!!!

  217. My 72 year old sister, two and a half years younger than I and my only sibling, died this past June of metastatic breast cancer. Her original cancer was diagnosed about 17 years earlier. She had a mastectomy, chemo with all of its awful effects, and a long term maintenance dose of Tamoxifin. When she had recovered, she had reconstruction, a lengthy and arduous process. Two and a half years before her death, on a routine chest x-ray, she learned that that same breast cancer cell had settled in her lungs and her bones. But it was early, and she was assured that she had a long life ahead. There were newer, better drugs, which only caused hair loss and fatigue, but not the awful vomiting. Next came her liver. She agreed to participate in a clinical trial of a new drug and was the first in the country to receive it. Heroic!! But in a much too short time her liver was overwhelmed and shut down completely. She entered a hospice and died five days later surrounded by family and more friends than I could have imagined. She was accepting. She was pain free. And she was at peace. I have my own story to tell, but I’m only writing here to honor my beloved sister. She said numerous times in the last year that she felt breast cancer received more attention than necessary. What about men’s cancers? They also are subject to breast cancer, although much less often, of course. And where are the walks and the ribbons for prostate and testicular cancers (men need to examine their testicles in the same way we do our breasts)? I’m not suggesting that we should not continue doing these things; I’m only suggesting that we try and put it in perspective. I make no apologies for joining with the women who participated in a bit of light-heartedness and with our unity and strength in numbers, saw it go viral in less than 24 hours. Wow! That’s some kind power! Best wishes for a happy outcome for all who are fighting the good fight!! My thoughts are with you.

  218. joanne6121994 says:

    You are an amazing woman and I am so lucky to know you.
    xxoo

  219. Susan,

    I’m very sorry that this meme hurt your feelings.
    You may remember that we met briefly at BlogHer and I admire your work. This is powerful testimony and I
    respect you for it.

    My husband died from “silent” kidney cancer 22 months after diagnosis, when our daughter was 2.5.

    I feel the same pain every time I hear about prostate cancer, which is so much less deadly and gets so much more funding. And the pink just kills me. I’m a little envious of survivors, but smart enough not to punish them. We’re each individual lives and just cause my husband lost, doesn’t mean anyone else’s life or victory is less precious. I certainly don’t play the “be glad you’re alive” game. Although for a time, I was so jealous of divorcees who’d say they “knew my pain.” Internally, I’d say, “At least your kids have TWO living parents, even if one lives across town!”

    I agree with you that we’ve had enough BrCa awareness. Like many folks affected by rare cancers, I have issues with the ACS, too. Another topic for another day.

    And while screening is important, it doesn’t catch that many cancers if you look at all 200 cancers together. Remember that overall survival has increased only 10% in the past 30 years!!

    I wrote about cancer research for several years and I don’t expect any huge progress coming up given the diversity of cancers and the amount of progress so far. I support research, but there’s no magic bullet. Health care reform and reducing disparities have more potential to save large numbers of lives right now.

    I recently wrote a post (Nov. 10) positing we ditch the pink and have a campaign for awareness that “death happens,” hospice is great, and everyone should have an Advanced Medical Care Directive. Sort of a joke, but based on my experience as a widow isolated among young people, and our general denial that death happens.

    My cancer message?
    Do your best, but cancer still happens.
    Fight fight fight, but we all have to die sometime.
    Don’t be so scared of death that you fear the survivors or those who are fighting.
    Talk about your wishes with those you love.

    And could we please get people to stop pretending that people who smoke/d are asking for lung cancer? It’s a terrible disease (and much deadlier than prostate — a table from NCI listing cancer diagnoses and deaths by type is at: http://www.cancer.gov/cancertopics/commoncancers).

    Sorry to be a bit of a downer — will be interested to hear what you think, perhaps offline sometime.

    I hope it’s clear that I say this with utmost respect for you and your valuable work in this world.

    Thank you for your thoughtful, heartfelt, honest, provocative post.

    X

    Supa

  220. Emily says:

    It was a thoughtless and stupid meme.

  221. Scott says:

    That meme lead you to share your story with the world, and then lead me to your essay Yes, we do need more awareness, of the kind you provide right here. As a culture we are aware of breast cancer the way we are aware of that antique clock in the back of the closet: we are aware it exists, and that’s about it. The kind of awareness you have provided with this essay it the kind that makes people write checks to support breast cancer research. Pink ribbons on Oreo cookies in October don’t do squat. If everybody who reads your post just donates ten dollars to breast cancer research, that silly meme will end up making some real action possible.

    Thank you for your story.

  222. Wendye Roche says:

    This is for Autumn-My daughter also has HPV..she gets Paps every 6mos..most of them good some were not ..She has a 6yr old son and is pregant again. the best thing you can do is keep getting your paps….Bless you.

    • Autumn says:

      Thank you. Give your daughter a hug for me. I wish her the best with her pregnancy!!!

      And yes, I just had my most recent Pap in December – it came back clear, thank God. But I will continue to test and keep on top of it, as the best thing for anyone affected by any sort of cancer/virus is to stay on track of their condition and make wise decisions in order to remain as healthy as possible.

  223. dewapelangi says:

    good idea bos, i like with your post

  224. Fernanda says:

    I didn’t participate in the meme myself and had no desire to share the color of my undergarments on FB. One of my friends posted this and I read it and about half of the comments. Wow! Thank you all for sharing your stories. I would have never read this had it not been for the silly meme. I’m sorry for how it made you feel. I do think it turned out to be quite successful (despite itself) in raising awareness and getting people talking about the issue, including a number of people who didn’t know much before. Having said that, I also believe we need to exercise sensitivity in deciding whether or not to pass these along. The point is well taken about modifying the meme to posting about breastfeeding. Maybe not such a good idea. Thanks again for your post.

  225. Marianne says:

    Thank you for posting this – as a fellow double-mastectomy survivor, I agree with much of what you said. I had the same thought process around what to post: um, should I say “n/a” or “I don’t wear one” or “n/a, or perhaps very ‘a'” …Instead, I posted a Note on my FB page today with some advice about breast self-examination based on my own experience. Perhaps, I realize now, a slightly passive aggressive move meant to say “how’s this for awareness?”… or something like that… But I know people’s intentions are good, and –this may have been stated already – this flurry did in fact serve to provide the right context / excuse / push for me to finally post that note, which I’ve been meaning to post for a while now. And that’s a good thing.

  226. Akshata says:

    Hi Susan,
    Your post really touched me. I did not participate in the FB meme because I found it disturbing that something as serious as breast cancer was being turned into a frivolous game. All it did was encourage some teasing and flirting. I wanted to comment on it, tell all my girl friends how silly they were being, but didn’t have the words for it. But someone tweeted a link to your blog post and I found my answer. I have now updated my FB status with a link to your blog post (I hope you don’t mind).
    This is what my FB staus reads:
    Akshata Udiaver – “For all those who thought posting bra colours on their FB updates was “fun”, spare a thought for all the brave women who have survived breast cancer by losing their “assets”. I don’t see how this frivolous FB ‘game’ actually helped create awareness about breast cancer. It was just plain “fun” for some (many) people, th…at’s all. If you really care, read this article by a woman who’s been there, lost that. Susan Niebur, hats off to you!” (link)
    I (touch wood) have a healthy body and I am grateful for that. I can only imagine the emotional trauma and physical pain that you have been through. Thanks for posting what really matters and I wish you love and health in your life. God bless!
    Warmest regards,
    Akshata

  227. sulochanosho says:

    Life is so precious and it is a pure ‘survival’ saga. The acceptance and courage to stand with the cancerous breasts removed off is another fresh lease of life unleashed. Things easier said than done. Our body is precious, let’s take care of it.

  228. Brian Harmon says:

    Good post. Well done.

  229. hatikumerah says:

    Tq for your awareness … I didn’t join the fb meme coz I thought that it just a play, never thought that it could increase the awareness regarding the matter. Tq so much.. I’m sorry for your loss but you see, there are always a rainbow after raining in the evening. Keep smiling my dear, wish you all the best..

  230. jackiwong89 says:

    very good post. 5/5. enough said. thank you.

  231. chaeul14 says:

    Is that why you dont own one bra because you have cancer? Oh well, be brave and just pray for God.

  232. crawfo says:

    i love this. LOVE it. thank you so, so much for writing it. cannot wait to repost.

  233. Jonas says:

    If it’s any consolation the chain letter is apparently older than the Newsweek article and had probably no connection to breast cancer awareness from the start.

  234. Dylan says:

    The original purpose of this activity on FB was to get women to do self breast exams when checking their bra color. That part got dropped, unfortunately, in the mass email that went around, in favor of “confusing the men.” There was, originally, a purpose and an action for this. Someone posted a link on FB and I read an article that actually knew where it all started, and what it was intended for. To find the link I would have to remember which of my friends had it posted in a comment on their status.

  235. Tracy says:

    When I first got the message about what the colours meant I was offended, but I couldn’t put into words what offended me. I think it needed to make a choice – if the game was about awareness then men should be included, if it was about messing with their minds then it had nothing to do with awareness. I posted something to my status about men getting breast cancer too and left it at that.

    Then this morning a friend linked to your post in her status instead of participating. I got as far as “white, with pockets” and my stomach dropped.

    I’m “beige, with pockets” myself, although I only need one of the pockets. And I don’t think anyone should be ashamed or embarassed for playing along – whether it was fun or was meaningful – because I think a lot of very good discussion has come up because of it. I just have a hard time dealing with superficial shows of awareness that don’t actually have substance behind them.

    This morning I changed my status to read:
    “has a new challenge for everyone – instead of a colour put the date of your last checkup (self exam or doctor) in your status. It would go a lot further at promoting awareness…” So far no-one has taken me up on it.

  236. […] “In The Name of Awareness” — from http://toddlerplanet.wordpress.com/ by Susan Nie… […]

  237. Janice says:

    Susan, I thank you from the bottom of my heart for your story. I am sorry for those breast cancer survivors that felt that they could not participate in the “color of your bra” thing that was going on. I, however, feel that you all could participate. By putting none I hope that it made people question WHY “none” put down. And then from there an explanation could be issued. Hopefully from there even if only ONE person could get a check-up and their life saved because of “none” put down, then that in itself is a blessing! I have had a cousin and aunt die from this disease. I have an aunt and UNCLE with it right now. It is a shame that people I know don’t even do regular self-breast exams. I love to read and the book I am currently reading will have to be put on hold because I am bookmarking this page so I can read the rest of these posts. Thank you so very much for sharing your story. I donate to breast cancer awareness frequently but I think it’s time for me to get involved. Whether it’s volunteering at the runs, walks or getting info out to others. I don’t want to sit any longer. And again I thank you.

  238. The message I got was just about messing with men and included not a word about awareness.

    Awareness campaigns bug me on a personal level b/c they focus on only a small number of diseases that managed to win the lottery in terms of fear and numbers.

    My first husband died of a genetic illness that no one know about and will never rate the kind of money and interest that the more high-profile killer diseases get even though it is physically and mentally debilitating for the few people it doesn’t just kill outright.

    My second husband’s late wife died of melanoma. Where is her walk? Are there cutey FB status bar campaigns to remind people to shun tanning salons and use sunblock year round? And the melanoma ribbon? Black, folks. No frilly color for it.

  239. I like your positive attitude …Thank you!
    Logan
    http://www.RagsToWealth.net

  240. raynasaurus says:

    I was sent this meme by a close friend who had a double mastectomy at 25 after two bouts of breast cancer, the second while pregnant.
    That’s good enough for me.

  241. Michelle says:

    As a breast cancer warrior — I had a double mastectomy in Sept 2009. Triple Negative/Metaplastic — very rare and very deadly. I too could have written — None. That would have gotten people’s attention. I thought it was all in fun, and any male who lusted after the person because of a color, I think had issues prior to seeing “Pink”
    Yes, we are aware, but not to the fullest we could be. Had I known that I was high risk — I would have gotten these things cut off 6 years ago, when the first benign lump showed up. There is so much awareness that still needs to reach them … all women need to find out if they are at risk. And no, NO ONE in my family has battled this deadly disease before I.
    I do like your post — what saddened me was all the “preaching status’s” out there. Face it, most of FB is non Christians, what are they to think of all the self-righteous stats? We will not win souls by doing that …
    Many who battled or lost loved ones — I think they were hurt by those who made a mountain out of a hill..

  242. Mara says:

    This was an amazing story, thank you for sharing. You are an amazingly brave woman. Very humbling to readers.

  243. cantquitbitching says:

    You have a truly inspirational blog. I’ve really enjoyed reading through it today. The Facebook game was definitely an eyeopener and I even noticed that after the color game, other games circulated as well. One in particular was a status update cut and paste that was informational. Keep up the great work!

    http://cantquitbitching.wordpress.com

  244. Jayanti says:

    Bless you, this really touched my spirit…

  245. […] meme winds up re-raising in breast cancer survivors who’ve undergone mastectomies is a cruelly ironic: Other cancer survivors joined in, telling me that they felt left out too.  After all, this was […]

  246. blackwatertown says:

    Thank you very much for this post. Moving and effective.

  247. Thank you so much for your moving article. I am SO sorry for all you’ve been through and have relatives and friends going through it as I write. Today was my very first blog and I actually wrote it in response to these campaigns. My daughter thought I should delete the 1st part to not offend from the get go those that are just trying to do their part in some way. Here is the first paragraph I deleted:

    This article was actually written just before the “what color is your bra” campaign came out. Maybe I unknowingly held it back for such a time as this? I think we are all aware of breast cancer, the question is ,”What will we do about it?”

    Then I wanted to check out a blog and yours happened to be the first to come up! I don’t think it was a co-incidence! I hope you will check out my blog. I’m new at this so keep that in mind. :)
    Sincerely,
    Kim’sKaleidoscope

  248. Very touching…Thank you for sharing.
    Best wishes

  249. Fran says:

    Hi Karen… We are all so close to one another in the sisterhood of “mammary removal.” No one can ever, EVER know the feeling we have experienced and the mutilation we have endured simply to have a chance to continue living, as you so elegantly wrote. It is not my choice nor my wish to “flaunt” my condition by openly participating in a group movement to “humiliate” myself and the cause by a public display of showing the color of my bra – BTW, I don’t wear one either after surgery on October 14, 2009 for a left mastectomy. I am still recovering from this surgery and the 6 months of chemotherapy prior to surgery (inoperable huge tumor – had to shrink first w) which nearly killed me too – literally. I too have been severely impacted by serious side effects from the chemo such as the inability to walk properly even now. I continue to use a walker sometimes and never without my cane. My calf muscles feel shrunken and it’s even difficult to stand upright on the scale to weigh myself without holding on to something. I had a severe fall and incurred serious injury to myself as a result of it. I still wear chemo hats, as my hair is soooo slow to grow after chemo was discontinued this past September.

    I will begin daily radiation treatment tomorrow. That in itself is humiliating, as I had to endure lying in a scanner with my mutilated breast exposed for a pre-CT scan for 20 minutes or so while a man, yes a man touched me and placed five tattoo marks over my scars and right chest area for marking placement during each radiation treatment. Furthermore, I will have to endure being exposed on both sides for all of the time it takes for them to position me on the scanner prior for each radiation session. Surely, you would think there is a way to do this with some type of porous light covering to at least preserve what precious little dignity and modesty there is remaining and to have female technicians for the breast cancer women – come on here! It goes on and on and on….

    I would rather to be proactive to promote awareness is a less conspicuous and less embarrassing way by joining other causes such as the American Cancer Society’s “Birthdays” and “Stand Up To Cancer” and others. I’m so glad you were able to write this for all of the others such as myself who feel the same way as you do about furthering our cause in a quieter and less conspicuous way. Thank you so very much for having the courage and being forthright to write this blog. I commend you for your bravery, dear. You’ll be in my heart, thoughts and prayers in the “sisterhood” of a fellow breast cancer survivors who shares a common bond that no other woman could ever know or want to know. I am grateful for your voice and views here. It helped me tremendously…. : )

    • Laurie says:

      Dear Fran, I am only a reader here–though I liked Susan’s blog entry about the Facebook meme tremendously and did post to her after reading it. I have been reading through the comments today, and really wanted to respond to your post. I find it very well written and really moving. I have had mastectomies, chemotherapy, and radiation, and I resonated with so much of what you wrote. I didn’t have as much trouble with the chemo as you did, and I’m so sorry that has happened!! I am not particularly active in Internet groups or postings (a good friend forwarded me the info about Susan’s blog after the meme started up on Facebook). And you may not be interested, but I did want to mention the *one* website I do look at regularly re: breast cancer and all of the treatments. The group is called No Surrender Breast Cancer Foundation (Googling it will take you there), and I have found it extremely helpful. As we know, experiences with cancer and treatments vary so much, and on those boards I’ve found people who’ve had operations very similar to mine, even though I’ve had a pretty wacky surgery trajectory (my 8th surgery is scheduled for this spring–I need a skin transplant to replace my crappy radiated skin! And people are posting their bra colors…geez!!). The founder and executive officer also links to truly helpful research (my cancer was triple-negative, various trials are underway on that particular kind, etc…) and a doctor weighs in periodically to answer questions. It’s a great “place” and although I didn’t go to the Internet at *all* while I was actually doing active treatment, I find myself interested in that particular site now. –Much strength to you, and all warmest wishes! Laurie J.

      • Laurie says:

        Oh crud, Fran, I am SO incredibly sorry that I mentioned that I must have my radiated skin replaced. I should never try to post and take care of kids at the same time. I completely missed that you will START radiation tomorrow. I have a lifelong history of skin problems and I am allergic to essentially everything–this is why I need the skin replaced. I had *no* problem with radiation itself, but one area of my radiated skin got infected (due to a problem with my reconstruction and implant, NOT due to the skin itself), and *therefore* it needs to be replaced. I am SO VERY sorry if I have worried you unnecessarily. Geez! The dumb meme bugged us enough, I don’t need to hurt you even more!!!! You will do GREAT and radiation has one very important side effect: IT WORKS. My thoughts are with you! Laurie

      • fran53 says:

        Hi Laurie… Oh my, please, please do not apologize for mentioning the fact that it is necessary for you to undergo skin graft surgery due to side effects from your radiation treatment. I understand completely, believe me! Not to worry, dear. I am just so very sorry for you to have to endure yet another dreadful procedure associated with the anguish of breast cancer – I truly sympathize with you. I send you the warmest of well wishes that it will go well for you, just wait and see.

        As for the first day of radiation treatment (I call it “getting burned”, haa), it was a “piece of cake” in spite of being fearful and anxious – I actually said the “Our Father” prayer three times before it was over, LOL. I really had difficulty remembering the ending the first time. I’m not necessarily one to pray easily or an overly religious person yet suddenly, it just popped up in my head and I caught myself repeating it. It was truly amazing. I guess 16 years of Catholic education came back easily, haa. My luck will be similar to yours, as I’m allergic to nearly everything under the sun (including the sun) and have the most sensitive of sensitive skin. I even had skin burns/blisters under both breasts and “armpits” during chemo therapy, ugh. I am hoping for the best yet prepared for complications at the same time. We’ll see how it goes. I do so appreciate your words of encouragement to me – it means a lot to me and is special to hear. Thank you.

        Thank you for your kind words regarding my post – I truly appreciate your comments. It is a mystery how some people just connect so easily. You obviously sensed a common link with me, as I have in you as well. Whatever the process, I’m delighted we have met and hope to become fast friends. BTW, I perused the website you recommended – I had not seen it yet but plan to spend more time exploring it. Thank you for suggesting it.

        Take good care. Well wishes to you, stay healthy and strong and my thoughts go with you… Fran

        • Laurie says:

          Dearest Fran, that is extremely kind of you! I feel like I really stepped in it with my dumb and unnecessary anecdote about my upcoming surgery! I had double mastectomies with immediate reconstruction (the reason I chose reconstruction at all was because it was possible to do it at the same time as the mastectomies, which is not the case everywhere), with “expander” implants, *after* chemotherapy but *before* radiation. I always knew that having radiation over the expanders was a risk–but it went fine, and last summer (just over a year after finishing radiation) I had the expanders replaced with silicone implants that are supposed to last much longer than the expanders, plus be more comfortable. All was well until I had the bad luck to get a staph infection on the radiated side, last fall. That’s the only reason I must have the skin replacement. And, as long as they’re doing that, I figure I’ll go ahead and have another reconstruction in the bargain–my right side, which was never radiated, has a perfectly good implant in it, and I’m very satisfied with it, so I might as well “match” (or come relatively close to matching!) again! So next summer I’ll have a latissimus dorsi reconstruction plus skin graft from my back (the lat dorsi as you probably know is a muscle in the back that the surgeon just flips around front, then he slides another implant in and presto! Well, sort of presto…first there’s the expander implant, then ultimately it’s switched out for the silicone one).
          Whew. Sorry to give you all that info, but I do want to stress that my problem was with the staph infection in the “pocket” that had been created for the implant in the radiated area! It’s unlikely that such a trajectory would happen to you!
          My biggest problem during radiation itself was the fact that I did it in part during the Christmas holidays, and so they played really bad Christmas music while I was lying there. I had to listen to “I Saw Mommy Kissing Santa Claus” every day while not being permitted to move!
          Now *that’s* the kind of thing that the folks posting their bra colors just have no “awareness” of…nor should they, in my opinion, until they (god forbid) have to go through it themselves! I am pretty left of center, socially and politically, and have NO problem with people posting dumb stuff about their lingerie on the internet, but calling it “awareness” is really just too dumb.
          The No Surrender site does seem like a lot of information at first…but you eventually find your way to what is most useful and helpful to you. I stayed off the net almost completely during treatment, but find that nowadays, as I’m sort of processing everything, I really like that site. It kind of makes up for all the dumb and clueless stuff one can encounter in the webworld–and getting to know you makes up for that, too!!!! Thanks for your message, and all very best wishes!!! I hope the music they play at your radiation isn’t too bad! Laurie

  250. Fran says:

    Hi SUSAN… It’s Fran here again. Please forgive me for having used the incorrect name for you in the above comment by me (I called you Karen) – I was reading a post by a “Karen” and didn’t pay enough attention. I am so sorry, Susan!

  251. […] 1/10/10: Susan Niebur does a great job of explaining the futility of this meme, from a survivor’s point of view. Jezebel’s […]

  252. […] been fairly viral on Facebook this week, but one blogger finds it a painful reminder of cancer.  [Toddler Planet, h/t @agentofstrange] (Update: WaPo claims the original meme intended to spread cancer awareness, […]

  253. Cyndi says:

    Thanks for this — just posted it on my FB page. Made me realize that I was grateful I could post my color the other day without thinking about it — but also really glad that you’re speaking out. Hope that other people will follow the link I posted.

  254. GMZ2 says:

    oh my god this topic beautiful
    Or the more in topic
    http://www.gmz2.com

  255. You are an amazing person to have survived such great difficultys, i know i am only 16 and i dont know much about cancer i have had alot of friends with family members going through it and it breaks my heart.
    i hope with all of my heart that you continue to be as stong as you are and to know that, even on the dark days that if you have gotton this far you can surly do Anything!!
    take care,
    melissa! xo

  256. Laurie says:

    Thank you! You were speaking for me too! I feel everything in the way that you expressed it. I too was not sure how to respond or to respond, and after I did, one “friend”(?) deleted what I said, and de-friended me. And, yet, nothing I said was mean-spirited or was it said to make anyone feel uncomfortable. It was just the truth! My truth!

  257. […] on my FB friend’s list was upset by the “backlash” against the campaign. She thought we were heartless people not fit to be good friends and play along because you never […]

  258. thoughtsie says:

    I remember my mom who also suffered with breast cancer. She was so courageous and strong just like you. I saw her struggle daily but she didn’t complained. She stayed strong and FAITHFUL to GOD. So be strong and have faith to what you believe. I salute you for your courage and strong will.

  259. I, too, was distressed by the lack of a call to action. So, I’m trying to create my own FB meme that includes a concrete call to action to get women to consider taking part in breast cancer research. I’m asking women to do 3 things. 1) Visit http://www.armyofwomen.org, learn about it, and sign up. 2) Post “I’m in the Army now” as their FB status. 3) Link that FB status update to the Army of Women website so others can read, learn, and sign up. If we could use FB to help Army of Women recruit 1,000,000 potential breast cancer research participants, that would really be something. I avoid the ‘think pink’ awareness – we’re all painfully aware, and some much more than others – we need action.

    • Jo Jo says:

      This is an idea I could get behind. The Army of Women is all about research and finding the CAUSES of cancers as well as better treatment options.

  260. tulip1810 says:

    I enjoyed your blog, and I am so happy you made it through the whole ordeal! I lost a husband to cancer and I know the pain and suffering he went through just to make it through all the test and going all the time to doctors and to treatment. Then feeling life was not the same because some people treat you like you are the disease! Thank God that you made it and I am proud of you for sharing your feelings! Smile you made an impression on someone today! Thank You! Mona

  261. DemMom says:

    I was thinking the same thing about the FB meme. Are there people who are not “aware?” And, did that meme remind/inspire anyone to do a self exam or finally schedule a mammogram? I doubt it. You’re brave for putting this out there.

  262. Angela says:

    Good grief. Seriously? Everyone always gets so bent out of shape about everything. Women always put off breast exams and colonoscopies and other health issues, and if this bra color stuff makes even one person remember or schedule an appointment or make a donation, then it’s worth it your moment of discomfort, imho.

    I lost all my hair in my early 20s to alopecia. it started when i was in my teens, and i went to a support group, and i swear everyone in that room was sobbing about the heartbreak of it all and boyfriends/husbands leaving them and how could they live without their hair, etc…, and i never went back. I wanted to learn how to DEAL with it, in a positive way, and get on with my life, not listen to people who, YEARS after their hair loss, still hadn’t coped. I’ve worn an itchy, annoying wig for over 20 years and I don’t begrudge anyone conversations about hair or tossing their beautiful locks in front of me, etc…

    I have a child with autism. I have an aunt fighting breast cancer. I have an uncle who died of lung cancer. I have a grandfather who died of Alzheimers. And I will never, never take offense at people who are well intentioned, going about their lives, who say or do things inadvertently that might hurt my feelings.

  263. Sandi says:

    Thankyou for posting your story. I too played that game, and my sister (a nurse) of all people jumped on me about how something as private as your bra color shouldn’t be posted on FB. I was so upset, A year and a half ago I had a lump removed from my left breast. Thank GOD it wasn’t cancer, but I am at high risk. It runs in my family. But what upset me the most was knowing she was on her way to her 19 year old daughters surgery, to have a lump removed from her breast. To think that someone could be so effected by it and yet so ashamed so write a color down.
    It’s stories like your that make me glad I played along!! Thanks again for sharing it!!

  264. Pam says:

    Thank you for finally writing something that totally makes sense to me. We need to be aware of the impact this disease has and try to get to the root of it. If the “bra game” does that then I am in support of it but only if we take the focus off the “pink partying” and get it on to the seriousness of this problem.

    I was diagnosed with Stage 1 cancer that that spread to the lymph node. It hit me broadside in that I had no symptoms, no family history, just a “suspicious mammogram. I still remember where I was standing and what phone I was on when I picked up the call telling me to “come back for a few more pictures.” The next 2 months are a blur and my life has been changed for ever.

    I had it easy in comparison to others, I know and I thank God for that. A double mastectomy, 2 months of chemo,the hair loss and now the fun of watching my body change overnight from the tamoxifen, I want to avoid the color pink at all costs. Everywhere I go (the grocery store, the doctor’s office, etc.)pink ribbons are this constant reminder of my pain and the pain of the many women I know. I look at the smiling faces as they parade on advertisements wearing their pink shirts and bandannas to cover their heads. Why are they celebrating?

    Firstly I think their promotions celebrate the disease rather than identifying and removing the cause. Yes, it brings attention to the problem but how much money is the Foundation putting towards trying to figure out why it is such a rampant disease in the first place? I fear that the pharmaceutical companies just love this approach….do we all think they really want to find a cure? Each woman going through this dreaded process sees close to a quarter million dollars worth of medical costs (out of pocket or paid in part by insurance)to get better. Then there is the medication after surgery which for me lasts for at least five years. If the “pink ladies” would start looking at foods and air and cosmetics and all the other chemicals that we are bombarded with every day I’d believe that they really want a cure.

    Do we need to be reminded every day that breast cancer exists? No, we just need to look in the mirror. But we do need to be reminded that we are leaving a troubled planet to our daughters and we are doing nothing to fix that it. If anyone knows of groups that are focusing their energies towards efforts that will help our daughters and grand daughters please let me know. I would love to be involved.

    .

    • Kim Halliday says:

      Dear Pam,
      I posted my very first blog yesterday to address exactly what you are saying. Right after posting,I thought to read someone else’s blog to see what’s out there. Toddler Planet was the first one I saw and my heart is still bleeding from her words and the other comments of torture these women have endured.
      I truly believe there IS a better way and we can impart that way to our children and others. My hope is to help people get out of the only system they know so they CAN learn a new way.I got free and my children are vibrant, living fruit of it!
      I’m brand new at this but you can join me at KimsKaleidoscope. Blessings!

  265. Tasha says:

    Hey Susan!
    Amazing post. Although Im going to disagree you with you that we need less awareness. I come from India and I cant tell you how many people are not aware about breast cancer. I agree, posting the colour of your bra was not the right way of going about doing it, but its atleast a start right? Msg’s in the inbox should have included symptoms and the to do’s if you spot one.

  266. Wow. I’ve never been to your blog before, but by some random happenstance I found it today. When that ‘meme’ was going around on Facebook, I posted that I staunchly refused to state my bra colour, and instead left a link for the charity walk I’m doing in September 2010 to support finding a cure for Women’s Cancers (the walk is called “The Weekend to End Women’s Cancers” in Toronto). People were all too excited to post bra colours, but I didn’t get a single donation or acknowledgement at that moment for my walking team, other than a few friends joking around saying, “Oh, we should guess your bra colour then!” – like a game.

    I think some people completely miss the point of ‘awareness’ — which really is to SPAWN YOU into ACTION.

    (For full disclosure, I’ve never been affected by breast cancer personally, but lost my great-aunt to Ovarian cancer, and I believe we need continued research and a cure for all types).

  267. […] second blog post was so honest, so well-written and so moving that I couldn’t comment without revealing myself as […]

  268. Britta says:

    The bra color meme took over my FB wall a mere 4 days after my lumpectomy, and there I sat in my BLOODY bra, feeling mighty pissed off.

    Thank you so much for posting this…for telling it like it is.

  269. cwatersart says:

    Thank You! I do not have breast cancer, but my grandmother did. It is very hard to see the other side of something so very personal. I did, however feel somewhat inadequate myself when faced with the all powerful FB bra status as I am a Fibromyalgia sufferer and frankly, if I can get away with not wearing one…I don’t. In the end, that is what I posted–I’m refusing to wear one (you can imagine the comments I got from that)!!! It is not encouraging to my own cause for people to be such quick followers of a trend, but refuse to actually do anything to help. Bra or no bra, our goals as women should be to unite and lift each other up by our actions and not by sitting on our rumps at a computer while we pretend to care.

  270. P. Lueck says:

    I, like probably everyone else, really did think we were doing something good. No harm or hurt was ever intended and it was not done in a frivolous light. We really thought we were doing something good.

    • Amanda says:

      I totally agree! The intent was to be supportive. Do people really think there was an intent to be hurtful? Wow..I can’t wrap my head around that, I just can’t. I have had several conversations with women who have said “oh, you know what, I gave myself a breast exam after that” and to be honest, I did myself. How is that not raising awareness and taking action? Besides the awareness issue, I still remain that the intent was to be loving and supportive. As any of us may be in the same boat at any point in our life. So do we sit and ignore and NOT show support next time? That is not who I am- sorry! I have had too many people extremely close to me affected by breast cancer specifically to NOT show support in even the smallest way. (Although, I have done way more than just that posting for support, believe me!! I just wanted to be clear that I don’t believe that FB is the only good way to show support, just one tiny way I felt)

  271. I am amazed by the energy and the enthusiasm as I read through these stories. The bra game or whatever the craze has been over the past few days is quite interesting but the truth is that the term “awareness” is overused and does very little to change the epidemic proportions of breast cancer. If you really want to bring about change “action” is what is needed! Walks, runs and races WILL NOT accomplish that goal or challange the status quo. What we need is sound public policy and what women and all Americans need is access to quality health care. I urge every single one of you to visit http://www.stopbreastcancer.org, the website of the National Breast Cancer Coalition the only advocacy organization that works to challange the status quo. Learn the truth and dispell the myths about breast cancer. I challange you to take action – be the change and really work to stop breast cancer

  272. BothEyesShut says:

    Hello Ms. Susan,

    You know, it’s very refreshing to read a piece like this. I try to keep a level head when thinking about dire issues such as cancer, AIDS, war, gangs, or any top-level humanist concern, but well-meaning media blitzes and trends can confuse and befuddle a person, and I personally believe they can ultimately hurt their cause. Remember the LiveStrong bracelets, for instance? I don’t know how I feel about cancer becoming a fashion accessory in popular culture.

    Anyhow, when I saw the bra-colors business going on, I definitely caught a whiff of pop culture’s stink on it and smirked a little inside. It’s like when I was in high school and the parents started tying yellow ribbons to their car antennas “to support desert storm.”

    You had to. If you didn’t have yellow ribbons on your antenna and pinned to your shirt, you were supposed to commit suicide or something. So of course all the kids of these parents started doing it to avoid having to commit suicide, and pretty soon people started taking real sh*t from the popular, ASB-type kids who had been wearing them from day one because they’d been sent to school with them by their mothers. Point is, there was no point. We were too young and self-interested to really give a flying **** about any military action or international incident.

    Anyhow, it’s that part of me that’s really kind of proud of you, in a way — not that I have any right to pride on your behalf — that part of me that wants to shred every tee-shirt I ever saw that had some spiritualist, self-righteous or deep and meaningful message printed on it. Tee-shirts are no place for a deep and meaningful anything, except maybe a deep and meaningful mustard stain, and I feel likewise about stupid Facebook status updates.

    If your dog Cletus just took a crap on cousin Ned’s shoe, then update your status by all means — but leave breast cancer out of it.

    Anyhow: what a well-written, earnest piece of literature you’ve inked, Ma’am. Good goddamn work. Can’t say I can pray for your plight, or that I can possibly understand what you’re going through, but I can definitely say that from my perspective, you’re making a hell of a difference doing just what you’re doing.

    Respectfully Yours,

    -BothEyes

  273. Amanda says:

    Wow…I understand the bitterness. I too have had extremely close members of my family affected by breast cancer in the same way you have been affected. I realize that you felt left out. However, I think we need to look at the intent of the FB updates. The intent was to show support for people who have struggled as you have, and raise awareness. As a matter of fact, since that FB posting I have already had 3 conversations with women that have checked their breasts just because it brought the issue to the forefront of their mind. I think we need to look at the positive side of this. We (women who wear bras) were trying to be loving and supportive of you (women who cannot wear bras) because it very well could be us in the same situation one day. There is absolutely nothing we can do to make up for your pain, suffering and loss. But to be bitter because we are trying to show love and support for YOU the very people who have went through this tragic experience…I don’t understand that. Do you think the intent was to leave you out? THE INTENT WAS TO SUPPORT YOU!! I just want to be clear on that-I am sorry you feel otherwise. (Our world is full of young, diverse, intelligent ever-expanding minds- and who knows what that FB update or “meaningful message T-shirt” might spark in someone’s heart and soul and hence motivate to find a cure…who says that can’t happen…who says?!!) I say speak your mind, on T-shirts, FB updates, bracelets, whatever..you never know what it might spark in somebody else and what may become of it! It may be the cure we have all been waiting for!!

  274. CK says:

    In a way I understand the way you’re feeling, but in another way I don’t. Raising awareness to those who are not aware is just as important as acknowledging those who have already become painfully aware.
    As the mother of two special needs boys I am 150% for raising awareness to their special needs/disorders/issues. Without awareness there is no understanding, there is no knowledge, and those who suffer are left suffering alone.
    Both of my sons have a form of autism, and today on facebook I participated in the status update for those who love someone with autism. Knowledge is power…and the key to understanding.

  275. ilinap says:

    Boy are you right about the action part. I struggle with what I can do. As I mentioned before, my dear friend is struggling with breast cancer. I stand by helpless, wondering what I can do to take action. Thanks for your voice. And for the record, I detected no bitterness in your post; just pure honesty.

  276. Erin says:

    Wow, this was really touching. Thank you for sharing.

  277. I confess, I first saw that meme notice and rolled my eyes. Then I went on fb and saw many participating, a sign of joy in the camaraderie of joining for a common cause. So I put in “light green”, which actually was a lie, but my previous bra color was more attractive than the one at that moment. Pretty stinking shallow, huh?

    Such acts help us feel like we are doing something, when the somethings that need to be done are overwhelming. But this blog, and the response blog related to the burden of living with cystic fibrosis, are powerful reminders that lip service is too minimal an effort, whether it encourages or offends.
    Kudos to you for another fantastic blog.

  278. […] In the name of awareness « Toddler Planet – 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, … addthis_url = 'http%3A%2F%2Fwww.life-sayings.com%2Flife-sayings%2Flife-sayings-awareness'; addthis_title = 'Life+Sayings%3A+AWARENESS'; addthis_pub = ''; […]

  279. Lana says:

    I have admittedly never thought of things this way, and I must tell you that I have participated in the fb bra color phenomenon but it was only with the most respectful intentions.

    I didn’t post up my bra color to raise awareness. To me, it felt more like a sign of respect and particularly a moment of gratefulness that the people who don’t get breast cancer should bless their lucky stars that they don’t.

    I’m young and who knows what will happen to me in the future but Im grateful that the women in my family have never gone through this experience and I post up my bra color as an homage to that gift.

    Thank you for sharing ur story.

  280. Cheralyn says:

    http://www.genelux.com watch the animation. Amazing stuff on the horizon…in clinicals right now in England and Germany!

  281. Summer says:

    I follow another blogger who had seen a link to this post, and had a post of her own in response. It really resonated with me.

    http://talanaf.blogspot.com/2010/01/you-may-think-less-of-me-but-this-is.html

  282. Rachael says:

    You know, I do see where you are coming from, and I am very glad you took the high road and played along regardless. I honestly don’t think it would do any good to be upset by something like this, because you know people are doing it for a good reason. Even if you think that “awareness” isn’t a worthwhile enough cause, it’s still good to spread the word and encourage people to do good things, like my friend Bill did with this whole “color status” thing. He posted this: http://www.facebook.com/?ref=home#/note.php?note_id=252982864400&id=1553199233&ref=mf

    He turned this into something that can ACTUALLY help by donating money. Plus, there are a lot of young people on facebook now that may not know much about breast cancer yet, and for them, awareness is a necessity. So while I understand why you felt the need to post about this, but at the same time, I do hope you realize that awareness CAN and DOES help move people to take action.

    PS, I’m a survivor of cervical cancer and am most likely unable to have children because of it, so trust me, I do understand the severeness of cancer and am not by any means trying to make light of your situation. I’m just trying to point out that every one of us should be thankful that people are willing to spread the word and encourage support.

  283. […] survivors were playing along; Some were offended. I could see both sides. Early in my journey, after losing my breasts, every Victoria’s […]

  284. tardis1217 says:

    Your post moved me. I, as a man, haven’t thought much about breast cancer. When you have virtually no chance of getting a disease, you forget it’s even out there. But we mustn’t forget. The disease isn’t what we need to remember, it’s those who suffer and struggle every day with this disease that we need to remember, people like you. Thanks for giving my heartstrings a twang, we all need it sometimes, and I hope by giving you feedback, I’ll garner some myself to my own blog! If the fates allow…

  285. Heather S says:

    Susan,
    I read your blog and it made me want to cry. I am sorry for your having experienced this and that you felt upset by it. Like others though, I will say that there were more than a few people, like myself, that were in need of the reminder to think about it, and go ahead and do an exam. I feel because of that, it was successful. I would also like to bring up the fact that all those annoying ribbons, pink, and save the ta-tas shirts do donate proceeds to breast cancer research, so they too cannot be a bad thing. I myself have had people close to me go through breast cancer, I have done the walks, raised money, donated money, and do the click campaign every day to donate to free mammograms for women that cannot afford it. I just wanted you to be aware that there were people that participate in action AS WELL AS awareness. Stay strong and beautiful.

  286. Cyn says:

    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?

    First, thank you so much for sharing your story. I can imagine what a painful experience this has been for you, especially since you have two precious babies. But, I would like to address the above portion of your blog.

    While I appreciate your view on the Facebook meme, I have to respectfully disagree. Look at what this “offensive” meme has done… look how many people are talking about breast cancer, all cancers… look how many women did a self exam when they saw this on FB… look how many women scheduled that mamo they were overdue for…look how many lives might be saved from this “awareness”. And, if even just ONE life was saved, wouldn’t it be worth you having the uncomfortable reminder that you don’t need a bra?

    And, guess what, that life that is saved might be mine. Because without this “offensive” FB meme, I wouldn’t be on your blog right now and I would have never heard of Paget’s disease. I am making an appointment with my doctor today. So THANK YOU from the bottom of my heart.

    Obviously, I haven’t had enough “awareness”. And, my “action” will be to start talking about it more so that other women can become aware of these lesser known forms of breast cancer. I just had a mamo and it was normal. So, I thought I was alright. If this FB meme had not happened, I might have let these other symptoms go until it was too late.

    The bottom line is as women, we have an awful lot of responsibility. And, too often, we put the needs of everyone else above the needs of ourselves (especially when we have young children). Any time we can get ANY reminder to pay a little closer attention to what our bodies are trying to tell us, it is a good thing. Even if it comes in the form of a silly FB meme asking the color of your bra.

  287. […] already been touched by cancer, and your sharp, sharp memories are in many cases what moved you to comment on my last post. Your words are powerful. As I read the comments, I felt your pain, your frustration, and your […]

  288. Yes, the time for awareness is now. The new proposed legislation is cutting insurance coverage for mammograms. In fact mammograms are covered biannually begining at fifty years, and annually at seventy years.

    Breast cancer grows at a faster rate in younger women. Early detection leads to a better outcome (survival).

  289. Emma says:

    Great post really some points for us to consider in future

  290. Laurie says:

    Whether or not one agrees with the FB exercise, it cannot be denied that it generated a great deal of interest. Perhaps the goal was to just raise awareness, however, action often occurs after awareness and talk. I, for one, joined a “Race for the Cure” team after the FB exercise raised my awareness. I’ll be participating in the three-day walk in San Diego, CA this year for the Susan G. Komen foundation.

  291. Wendy says:

    I participated in the bra colors, and I’m sorry. As I forwarded the meme, I stopped to think about whether a friend who is a breast cancer survivor would want the meme and ultimately decided not to send it to her. I feared I would be rubbing salt in the wound.

    Then the joke was turned on me. I’m infertile, you see. And now the new hot status is to post the birth-weight of your children, and another wall-post making the rounds for all the “Moms who manage to keep things balanced!” Every single one is a knife to the gut.

    I’m so sorry.

  292. John says:

    It is posts like yours that bring about action, but unfortunately it is a bra game that brings about the awareness to others to read posts like yours to create the action. I do not have any family member that I know of that has been afflicted with breast cancer. I do have family with other types of cancer. If the awareness is not made then action cannot be taken. I am sorry for your tragedy. I hope that your experience expressed here will create action for all cancer. Thank you for posting. I happen to read this because people were talking on fb about how others were upset. I did not know what happened nor follow it but decided to read because of the awareness it generated.

  293. Dorci says:

    Thank you for sharing your story. You are a truimphant survivor and for that I honor you.

    Breast cancer seems to be attacking women at a younger and younger age. And the sad thing is that many younger women are not aware of the dangers of breast cancer. I’m old enough to be well aware, but we have young sisters just coming of age who need to be encouraged to do their self breast exams, to see their doctors right away when there are changes.

    I hope through this they do so that the next generation of women will see fewer and fewer women with breast cancer.

  294. Texasholly says:

    Well said and thoughtful. I had never thought about it that way!

  295. Reluctant Naturalist says:

    I am in tears not only because of your story, but because of the feedback from women who were touched by your courage and openness. It reminds me that the ways in which the collective “we” sometimes thinks we are helping, is not really helping at all.

    I worked on a CDC and non profit association public awareness campaign for chronic fatigue syndrome as the public relations contact. What was so amazing about this was that the “awareness” campaign was not for those who suffered from the disease. The patient community was VERY aware of the debilitating illness.

    Awareness campaigns, at least from the inside of “organized” campaigns are for friends and family who don’t understand. They are for the general public and health care practitioners. They are for the rest of us, so that we may possibly take a pause in our everyday bustling to give thought and hopefully action to person(s) who are suffering with whatever the campaign is featuring. It is not enough to know about, or know someone with a particular illness. We must be MOVED out of our own complacency to find a way to make a real difference.

    I honor you and your experience and urge you to continue to share your story. For the rest of us; we can donate money to research, find effective ways to support the women in our lives dealing with breast cancer, we can perform regular breast self-exams, and get regularly scheduled mammograms, we can also encourage the mothers, sisters, daughters, aunts, cousins, friends, co-workers, etc. in our life to do the same.

    Thank you.

  296. Mary says:

    You say that awareness is understated but your post is exactly what this little “game” promotes: stories from those who have been there shared with those of us who by the grace of God have not .. yet! In my humble opinion without the “game” I would have never read your post and would have never had a glimpse into your world. I hope that I can be a better person because of it. God Bless you and everyone else who has and will walk your journey. May we all realize that life is more than the boobs or butts or even penis’s.

  297. Holly says:

    My mother-in-law is a 2 time survivor and she would be mortified to know that women were posting their bra colors where men could read it. I didn’t post mine because the thought of some of my husband or mine’s friends reading it and imagining me in my bra rather mortified me too. I would have, however, posted a note on my fb page urging women to get a mammogram or something to that effect.

  298. Kristin says:

    There is a history of Breast and Ovarian cancers in my family. At the age of 21, I was just as silly, and carefree about life as anyone studying abroad during college. My wake up call came from something that scared me. I found a lump in my breast, from doing something stupid, of all things getting a sunburn. The burn and nothing else was what caused me to check my breast. I was 21 invincible. But in that moment 4,000 miles from home I finally felt very mortal. I decided I was only less month from going home and that I couldn’t make my friends and family feel as helpless as I did, so I didn’t tell anyone. Within a week of getting home I had a doctors appointment to have it checked out and a few weeks later had, the still unidentified mass removed. It was the most horrifying time not knowing, but I was lucky, it was benign.
    Awareness is a good thing, and in a forum that has a large population in the age group where people think they are invincible sometimes it takes something edgy. This initiative was cleaver, maybe even racy, but not meant to be vindictive or malign those it was intended to support. And if a girl that has breast cancer that thinks herself still to be invincible, catches it earlier, because of this meme, then good. I have seen how cancer racks the body, soul and mind of people living with it in my household. And yes we do need action, but awareness, there is not to much, when part of the population doesn’t believe it also pertains to them.
    The posting of colors also brought out stories and is making people think. By all means something good has come out of it. I posted my color and a lot of people reading it would think it was going with the crowd, but it was personal to me. And I hope everyone supports a post like yours on facebook, its real and everyone needs some reality in life. I support action but awareness needs to be there and maybe not always in “fun” or “game” like package as this one, sometimes it needs to be raised through reality. Anything that makes that person that says “not me” stand up and take notice.

  299. Leon Uys says:

    When I saw the colours flying I also wondered what it was. I also couldn’t publish my colour because, you see, I’m a man.
    But that doesn’t mean that we don’t care about our mothers, wife and daughters.

    And there is really not much more than awareness that we can do about it because there is no point in me going for a checkup.
    But I can encourage and help my loved ones to go for checks regularly.

    Thank you for an awesome blog!

  300. Sarah says:

    Thank you Susan. I was hesitant to play the bra game until I saw YOU had played along too, so I thought it couldn’t be too awful:) So thank you for telling us your real thoughts and emotions and not just your bra status (FB can be so heartless and impersonal, for all the talk about “friends”) and just sharing with everyone everything about this horrible experience that you have been through. You support and lift up so many people. Thank you.

  301. Bronwyn says:

    Of course there are people who are not aware. There are also people who do not wear bras because they find them uncomfortable, or because they are flat chested to start with. Bras are a damned nuisance if you ask me, they certainly don’t make me feel womanly.

    You people who are breast cancer survivors do not need to be made aware, of course you don’t. The rest of us, however DO need to be made aware, or reminded, or educated, every now and then.

    What “action” do you suggest we should take? As far as I know “we” are doing all we can in terms of research into causes and treatments. I can’t think of anything else other than getting mammograms and checking our breasts – an awareness campaign is a jolly good way to increase the numbers of people doing these things.

    This meme was not intended to help those who have had cancer, it was intended to raise awareness among those whom cancer has not yet touched.

    And no, I did not take part in the meme. I haven’t worn a bra since I got it, having been ill in bed.

  302. You are one brave woman!! Congrats!!!

  303. tcmom says:

    Like a few others, I rolled my eyes when I saw this meme too. And wondered aloud how my bra color could really raise awareness. It seemed some excuse to just give everyone a peek under my shirt. LAME. Because who is this meme really for? The women who CAN fill out different shades of bras? I have read your post a few times over now. Have sent the link on. It seemed about time I comment if I was so touched. Thank you for writing something of true meaning, substance, experience and in the spirit of educating others about what BC is really about. You’ve done what every shade of bra color posted on FB most certainly could not.

  304. Debra says:

    I’m a genuinely caring and compassionate person. I truly want to help in any way possible. My intentions are never to offend. By participating in the FB posts I honestly thought I was making a difference albeit a small one. When I saw the news broadcast regarding this activity I was proud of the fact that the end result of this “game” was a significant increase of traffic to the Susan G.Komen website. That to me was “action”. I did what I thought was right. If that’s not correct please define what action I should be taking.

    • sharon says:

      don’t ever feel like you didn’t act right…your original intent was PERFECT…that’s another reason for awareness and the depth involved…asking what MORE is available to do, not that your current action was wrong ;-)

  305. whymommy says:

    Thank you all for your wonderful comments to date. I know that there was no malicious intent, and I realize now that most people just never thought about it in that light. I’m glad that we got to talk about it. Thanks. For anyone asking, “What else can we do?” I challenge you to read this: bit.ly/4Md0c8 and take the next step. Donate. Educate. Advocate. Volunteer. Four easy ways to make a real difference, and any one of them would be an amazing outcome – an easy way for each of us to make a difference.

  306. Margaret says:

    Thank you for this.

  307. sharon says:

    There is depth to awareness…we sholdn’t stop the awareness of ANYTHING that brings sadness and loss to our lives or those around us. What I think there isn’t awareness of is the depth of perception and “lessons” of those just plain affected by it – directly or indirectly. My mother didn’t participate becuase there’s more awareness about breast cancer than there is about heart disease in women, which is symptomally different than it is in men and gets misdiagnosed all too often. My personal loss is my 52hr old daughter last July and a most recent ‘discussion’ was about sensitivity…the GRIEVING party needing to be sensitive to the one getting the news – oh the irony!!

    To reiterate my point…there is DEPTH to awareness and I think THAT is what is missing…so THANK YOU for feeling left out, still “playing”, and posting the depth of YOUR perception as it has affected you.

  308. SevgiN says:

    This is exactly what I thought when I saw the meme. Thank you for writing this.

  309. Janalyn says:

    Ok, this will sound insensitive, but why not just use one of the myriad products out there to fill in blouses and swimsuits? Nearly Me and other companies seems to have pretty sound technology. Heck, I’m so flat naturally I could use one of their bras. And the meme is not to give awareness to cancer survivors, but to people who don’t normally think about mammograms.

  310. Val says:

    Amazing Post! Thank you for your well written feelings and experiences.

    I didn’t think on the level of experience you have had – but I did think it was a senseless exercise – in the name of awareness ?? I could not participate. How much more aware does the world need to be? I don’t think posting your bra color made any difference in the name of finding a cure. One would read it, and move on … back to our own day to day realities.

    How about the pink glove dance. A company made pink gloves and sold them to hospitals – to raise awareness for breast cancer. Did they donate all the money from the gloves to research??

    And what about ovarian cancer and prostate cancer ??? All the other cancers?? I Hate! Hate!! Absolutely Hate cancer! It has taken too many members of my family. It keeps killing. It keeps creating suffering and pain, it keeps the fear alive …. and what can we do about it? We pour money into finding a cure –

    Think of the number of people employed because of cancer research and cancer care . The cost for treatment is ridiculous. Cancer is big business. When the cure is found, and cancer is eradicated, all those folks will have to go back to school and get trained in some other field? Really?

    We post our bra colors because that makes a difference? In what world?

    My thoughts are truly not written to offend anyone and I am very sorry if I have. I am so very frustrated and have an overwhelming helpless feeling as I have watched so many waste away and die from this horrifying disease.

    And we post our bra colors!

  311. Dianne says:

    Everyone here who’s had it with the pinkwashing, as I have (and I had breast cancer five years ago; lumpectomy, chemo, radiation, Tamoxifen), should check out Breast Cancer Action, aka “the Bad Girls of Breast Cancer.” They promote research and addressing the causes of breast cancer. They have the “Think Before You Pink” campaign, which is SUCH a breath of fresh air. It is about challenging the companies who produce the boatloads of pink products to actually do something about addressing causes of breast cancer. Especially the ones who make their profits by selling products that are suspected, or proven, to help cause breast cancer!

    http://www.bcaction.org/

    http://thinkbeforeyoupink.org/

  312. ali says:

    awesome post- major kudos for you bold blogging and for your bold surviving and living on!!

  313. Abhishikta says:

    I was telling a friend who was upset over the color game on facebook over her grandmom being a breast cancer patient. I replied to her saying its to add color to the undying spirit of survival…..and guess what when I read your post, I wasnt wrong. Still havent been able to make up mind over the right/wrong way to the initiative…but cheers….to the spirit of survival.
    Best Wishes

  314. Miche says:

    I loved this. I actually had other issues with the meme on facebook-the updates were sharing something personal that perhaps only husbands should see-your bra color. Teenage girls are sharing colors with high school friends, including boys. I don’t want any of my mail friends imagining whatever color I happened to be wearing. I just wasn’t-and isn’t- appropriate, in my opinion. And I heartily agree that sharing your bra color isn’t actually bringing any awareness-as well as the fact that awareness isn’t the issue. I’d rather see info shared about the Susan Koman 60 day hikes coming up to raise money to research.

    I loved this post. Thanks for sharing.

  315. Miche says:

    oh im a moron, I put mail and should be male. geeze. sorry.

  316. Karen L says:

    I am sorry for your journey through cancer. I am glad you that have fought for your health.
    I am also sorry that the meme you saw on FB caused you pain.
    However, I think that your anger at your situation is showing. Perhaps anger at everyone that is still taking the babysteps of awareness (not yet into action) that haven’t taken the giant steps of survivors?
    Let the girls have their fun, if it reminds just one of my daughters or sisters to do a monthly self check that it’s worth the few lines of text on my laptop screen.
    Breast cancer has touched my life. I have 3 friends who are survivors, my aunt is about to start radiation treatment. I also have a friend who just went through a double mastecomy after her family doctor said “your young, the chances of this lump you’re feeling being could be anything is practically nill” 3 weeks later she is breast-less but alive thanks to friends who insisted she act and find another medical opinion.
    So, it seems to me that AWARENESS is the beginning, don’t begrudge those just starting the journey.

  317. Angie says:

    As a breast cancer survivor, too, I sat and wept through this post. You wrote so graciously and poignantly, pointing people to the truth of what it all really is like. I asked in my facebook status “What good is awareness if it doesn’t prompt us to action?”

    Thank you for sharing your heart so well. So honestly. I was blessed.

  318. […] the colour of your bra” meme to raise “awareness” of breast cancer.  This post at Toddler Planet has got to be the best I’ve seen on the topic: As I talked to friends on twitter about it last night, a single message came through from my friend […]

  319. netsurvival says:

    Ok friends, we had to survive with this awareness

  320. Allison says:

    I’m late to see this post, but wanted to tell you that I have also had a double mastectomy, and I too wondered what people would think if I wrote what my “bra” status was: Black, with beige prosthetics.

    Anyway, thanks for writing this. I’m so OVER the whole “let’s make breast cancer cute” thing. It is so f*cking not cute.

  321. Samantha says:

    My friend just posted this on my facebook wall. I recieved the email and wondered how on EARTH it could possibly raise awareness!
    And you make an excellent point. I’m reposting this for others to read, as I found it very moving.
    Good on you. You are a beautiful, strong, brave, corageous woman, and an inspiration to us all. I’ve never known anyone with breast cancer, and hopefully never will, but I know that according to the terribly sad statistics, I probably will.
    I’m posting this on my page because, though I’m entirely behind you with the action over awareness stand, it does start with awareness, and I believe your post will do a damn site more for Breast Cancer Awareness than that silly ‘post the colour of your bra’ meme does.
    Every time I see the words Breast Cancer I do a little check (if I’m alone of course) and I’m sure others do the same. Your post reminds us it’s real.
    I don’t know you, but you are my friend, and I am proud of you and all you have achieved. I am impressed, and humbled, to have people like you in the world.
    Well done you. Thank you so much for your post.

  322. amotherworld says:

    Beautiful post – thank you for sharing!

  323. […] I wrote the above post, I read an extremely moving post by Susan Niebur, a breast cancer survivor, on why awareness is not enough and how memes can be […]

  324. Sheri says:

    Wow…I’m so sorry. I lost my step dad to cancer in April and it was by far the most difficult thing I have ever been through; and I was not the one fighting for my life.
    Your friend Allison is right it is not cute. I think most of thought of it as raising awareness and were not thinking of how it would actually effect survivors. You are all amazing strong smart woman. Having seen Cancer first hand, I still did not see the big picture. Thank you for sharing your story and being who you are!

  325. […] A woman who had a double mastectomy blogged her thoughts to the […]

  326. Lisa Stone says:

    Susan, thank you. Having supported my mother and one of my best friends through breast cancer in the past year, I cannot thank you enough for sharing your perspective.

    As for your craft, well, what an incredible writer you are. You are BlogHer of the Week: http://www.blogher.com/blogher-week-toddler-planet

  327. Amber C says:

    Thank you for sharing your story. My mom is battling this disease for the 3rd time. I struggled with that meme because it didn’t seem to create awareness at all. Sure maybe a few people here and there got the point but many many more would have gotten had it come right out and stated what it was about. Suggesting that we keep the guys in the dark seemed to defeat the point as well.

    I really appreciate your thoughts and words on this.

  328. Susan. You are such an incredible writer and amazing woman and friend.

    If I would have slowed down just a bit before I played along with the FB game, maybe I would have thought about how painful it was for you and many others.

    I, like many others, assumed that anything we could do–silly or not–to raise awareness of the issue would help. But I see what you’re saying here. It’s more than awareness that needs to be raised. We all know about the issue of breast cancer–how could we not?

    It’s money. It’s pressure for lawmakers. It’s everything and anything we can do to find a CURE and put an end to this disease.

  329. Marcie says:

    It had nothing to do with breast cancer. Some people just can’t have fun without making it about something. The whole breast cancer thing was an add-on and I wish people would get over it.

  330. Lisa says:

    I found your post through Blogher of the week. Congrats on that! This post is amazing.
    I also just posted you to facebook.

  331. JCK says:

    Congratulations on your BlogHer of the week post! It is well deserved.

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