“Boobie Wednesday”

Today is Wednesday and in the world of Twitter that means it’s “Boobie Wednesday,” a day full of boob-filled avatars. The purpose for all the cheesecake (and the occasional beefcake)? To raise awareness for breast cancer. Yep, you heard right. Women and men stylin’ and profilin’ in the buff or barely-there bras is all for cancer awareness.

When I first joined twitter last fall I was adamantly against the whole concept of Boobie Wednesday. I thought it sexualized women instead of raise awareness of self-exams, mammograms, and yearly doctor’s visits. I thought it was an excuse for women to attract the drool and attention of the anonymous masses of men on Twitter. I doubted if anyone was really thinking about women and the effects of breast cancer. And I certainly doubted that tits in a lime green bra made one woman think of giving herself a self-exam. So I abstained. I didn’t switch my avatar over every Wednesday to a shot of my breasts. And I criticized the whole concept, griping to anyone who would listen to me.

Then came a Wednesday at the end of January. I swapped out the avatar for one day to show my breasts post-mastectomy, post-reconstruction. I sent out a series of tweets about my nearly two year experience with breast cancer. I was shocked. Among the random smattering of tweets saying things like, “nice tits” and “#motorboat,” were far more tweets from people who didn’t know of my experiences prior and were grateful that I had shared.

So today, Wednesday, instead of trying to educate one tweeter at a time in short truncated tweets, I’ll talk about my experiences here.

Three years ago, April 2008, I was performing my monthly self-exam on my breasts when I felt something odd in the space between my left breast and my left armpit. I had been performing self-exams since a month before my 16th birthday when my mother had been diagnosed with breast cancer. I knew what was “right” and what wasn’t. I made an appointment with my gynecologist for my annual check-up and during the appointment  asked her about the spot. She was unclear about it but recommended I see a breast specialist given my family history. Smart move, the specialist found a lump in my left breast.

In October 2008, after I came back to Texas from NYC, my doctor removed the lump on a Friday morning. The following week, during my follow up appointment we had “the talk.” Some tissue was good, she said. Other tissue is not so much, she said. So what do we do, I asked. We got everything. Nothing concerning on the MRI. Nothing spread. Nothing in your lymph nodes. So we monitor every 6 months. What does that mean? Here’s what that means: office exam every 6 months with in office ultrasound of my breasts, blood tests, MRIs every 6 months. How long do I screen like this? Till you’re 40, then we add mammograms into the mix. Every 6 months? Yes.

My head was spinning. There were cells. But we got them out. Now I had to undergo expensive, annoying screening measures every 6 months? I didn’t want that. I didn’t want to feel like I was living my life in a petri dish, being observed by doctors all the time. Surely there was something else I could do to mitigate my ongoing risk besides all this screening.

So I asked. What are other options?

My doctor said there were medications. They would make me infertile and menopausal. At 23.

I could go through with the genetic testing. Thousands of dollars out of pocket. And then what? What would we do if indeed I had the BRCA 1 or 2 or both? Surgery? My mother, her sister, and my father’s sister have all had breast cancer. My grandmothers died of cancer. My maternal aunts all had breast cancer. I don’t think I need a test to tell me that there’s something genetic going on here.

So then I just said: What about a bi-lateral mastectomy?

She blinked. That’s a big decision, are you sure it’s something you want to consider?

Yes. If I do it now, I have options. If I wait till I’m 40, 50, older, and have cancer again I may not have options.

And so it began. My surgeon would perform my mastectomy. The plastic surgeon who had performed my mother’s reconstruction, who I trusted deeply, would perform my reconstruction.

It took me nearly a year to finalize my decision, get my insurance company to approve it (yes, you heard right, it wasn’t a given), and to settle on what kind of reconstruction I would have.

May 22, 2009. Ready for surgery. Doctors come in to mark my body for surgery. The mastectomy will only be a few hours. The reconstruction could take up to 20 hours. Total, I was in surgery for 22.5 hours. I settled on a skin-sparing mastectomy (keeping my nipples which was very important to me) and a DIEP Flap procedure for my reconstruction.

The DIEP procedure entails cutting low across the stomach from hip to hip, up in a semi-circle above the belly-button. That “flap” is removed and used to reconstruct the breasts. The fatty tissue underneath is also taken to reform the breasts. Blood perforators are delicate lifted from abdominal muscles and used to increase blood flow to transplanted tissue. The belly button is left, like a stalk coming up between abdominal muscles. Skin is then pulled from the upper abdomen and lower pubic area to cover the exposed tissue. I have what roughly looks like a “anchor” scar around my belly button, down to my pubic line and across my hips like a smile.

I spent four days in ICU afterwards. I don’t remember most of my time in ICU. I remember it took four nurses to help me get out of bed on the third day so that I could start waling and sitting up right. I spent about 3.5 days in the hospital after leaving ICU. Occupational therapy had to help me shower, I was too weak and sore to do it myself. I had to use a walker for almost a month. I could not sit up on my own, get out of bed on my own, or use the bathroom on my own. I had 9 drains coming out of my chest and abdomen to draw fluid out of the surgical areas and prevent infection. My legs, feet, ankles, arms and hands swelled, painfully. All this continued after I left the hospital.

My family had to bathe me, dress me, help me get in and out of bed, and worst of all, assist me in using the bathroom. But as humiliating as it was to ask my mother or my sister to help wipe me, the real difficulty came when the incisions started to fail.

I developed a skin allergy to the glue used to seal my incisions. But there was nothing else to use. My belly button “collapsed” twice. The skin along my abdominal incision failed down to the muscle layer. I developed a wound large enough for me to lay my hands in. I developed two failed incision point on my left breast. Then the unimaginable happened. My left breast went hard. The blood flow had failed. The breast tissue had died.

July 1, 2008. Surgery number two. The abdominal incision had reached critical mass. A Wound VAC was required to close it. My surgery was going to go in, debreed the wound and insert the VAC’s gray sponge. She was going to remove the failed tissue from my left breast. Prior to the surgery I was prepared to lose some, but not all my breast. After the surgery, in recovery, I raised my left hand to touch my breast. Nothing. In it’s place was a concave crater. I cried. There hadn’t been tears of loss till then. I had cried in pain or in fear of the mounting concern about my wounds, but I had never cried because I lost my breasts. This time was different. This time I wasn’t ready for what had happened.

That weekend, Fourth of July weekend, I was at my lowest point. I didn’t want to touch it or look at it. I was in pain, severe enough to need an additional pain medication to get through the weekend. I cried, frequently over the course of the weekend. Finally, my mother came in, sat on my bed and talked with me. We talked about how nothing could be done now. The dead tissue had to be removed. But we still had options, I could still have a nice, reconstructed breast. By the next week, by my followup appointment, I was better. I could look at my hollow chest without crying or looking away. And once I got my prosthesis, I was cracking jokes. The prothesis, lovingly called “Fub” (Faux+Boob = “Fuh-b”), lived on my nightstand on little pink pillow at night.

So, I made it through. I made it through a second failed abdominal incision and the subsequent Wound VAC (a machine worn like a purse that applies negative pressure to close a large wound quickly) that I needed for a month. I made it through the second reconstruction surgery (a latissimus flap surgery from my back) and the inevitable silicone breast implant needed to fill out my left side. I made it through 11 hours of liposuction to reduce the tension on my surgical scars to prevent them from opening continually (a problem I had to address with at-home wound care for a year).

All in all I lost my left latissimus dorsi muscles, a quarter of my abdominal muscles; all sensation in my breasts, most of my abdomen, most of my back, and my nipples seldom if ever become erect. But my risk for another round in the ring with breast cancer has been slashed. And I can live the life I want. It’s been worth it to me.

So the next time you want to celebrate Boobie Wednesday, send out a tweet an hour reminding women to perform self-exams, to get mammograms, see their doctors on a regular basis. Support community clinics that provide reproductive care to women without health insurance or who are on Medicaid. Tweet that there is life after breast cancer. That women are still sexy beasts after breast cancer. That a reconstructed breast is as kick-ass as a “real” breast. Tweet out that breast cancer doesn’t have to be more than a scenic stop on the road of life, if preventative screening measures are taken.

Use your Wednesday to educate those in your life and your Twitter stream about being proactive in their health care. You can get up in your boobies’ business during your self-exam. Believe me, they’ll thank you for it.

 

UPDATE: See related posts “Post-Boobie Wednesday” and “Let’s Talk About . . .

29 Comments

Filed under Feminism, Twitter

29 responses to ““Boobie Wednesday”

  1. I love you! Thank you for sharing your amazing story. xo

  2. Menzies

    I admit I’ve never read or listened to someone actually systematically talk about their experience with breast cancer. Not in the way you did – explaining each step you went through, how it was performed, the technology used, the effects on your body.

    The fact that you describe these surgeries so thoroughly makes the parts where the technical description falls aside and the reader comes back to you you, the woman going through the experience, much more real. Much more powerful.

    Of course, that’s the literary side of things: on the personal plane, having known you before I read this makes its impact even more profound, because the reality of these experiences becomes grafted onto what I already know of you.

    Thank you for sharing your story. It’s rather an amazing one.

  3. Melissa

    Thank you for sharing your story. I knew you you were a breast cancer survivor, but I had no idea your experience was such as it was.
    At this very moment, I don’t know how to properly express how much I admire you.. for being brave enough to make that decision at 23, for your perseverance, for sharing your story with us.
    Sarah, you are awesome! *hugs*

  4. I just wanted to thank you for sharing your story. I have know just a few women who have gone through and survive Breast Cancer, but not a such a young age. I was very touched and had no idea the extent that trauma that this kind of disease can put you through. Just wow……you’re awesome

  5. T.

    I am deeply sorry for what you went through. Your story tells the reality of the ugly, un-sexy side of breast cancer that I wish were better told, and I appreciate your sharing it.

    However, as a person who had breast cancer myself–admittedly, a much milder form of it–I will never, NEVER “celebrate” anything to do with this disease. Nor will I ever be a party to anything that objectifies a body part over a whole human being the way “Boobie Wednesday” does.

    During my ordeal, I had a great surgical oncologist. From her, I learned some not-so-cheery things about breast self-exams. I was shocked to learn that while she advocates being familiar with your own breasts and seeing a doctor if something seems wrong, she doesn’t vigorously advocate self-exams–because a change in a breast can be so slow and gradual that frequent self-exams may not even detect it.

    I also learned that even blanket admonitions to women to get mammograms may be ill advised. Decisions about when to start getting regular mammograms and how often are best made between a woman and her doctor based on many factors, including her age and family history. Every time a woman gets a mammogram, her breasts are being exposed to radiation, which itself can leave her more vulnerable to breast cancer. It’s a calculated risk and needs to be taken with serious consideration beforehand. Also, mammograms are detecting a great deal of cancers so tiny and slow-growing that they never pose a real threat to a woman’s life at all–but once they’re discovered, a woman may the need to go through the whole ordeal of treatment, which can be worse than anything else she might deal with. Women who successfully complete this treatment are artificially boosting the “survivorship stats,” making breast cancer look less deadly, when the truth is, we still haven’t made a lot of progress against the more aggressive forms–the kind that can kill a woman no matter how soon they’re detected. (Yes, I found out that “early detection” doesn’t always help, either. I found out all kinds of things the media had never told me.)

    There are women out there with deeper concerns than whether or not their reconstructed breasts are “kick-ass.” They’re concerned with their LIVES. They would gladly give up having any kind of breasts–”kick-ass” or not–just to know they will live.

    I believe in support for community clinics, and in sending the message that there is life after breast cancer. I just wish more women could enjoy it–and I’m not sure Boobie Wednesday makes a big difference in that happening. It gives men a lot of breasts to ogle, and women an excuse to become sexual exhibitionists online with the excuse that “it’s for a good cause.” What’s really happening, though? Is research being done into the causes of breast cancer because of “sexy” promotions like Boobie Wednesday?

    You say “breast cancer doesn’t have to be more than a scenic stop on the road of life, if preventative screening measures are taken.” Ah, but there’s the problem. Screening measures are NOT “preventative.” They have never prevented a single case of breast cancer. They can’t. All they can do is find what is already there. We really do need to take serious efforts to find a way to PREVENT breast cancer, so no one else has to go through what you did, or die from it. The thing is, flashing our titties online isn’t going to do it. Demanding more funding for research into causes and prevention is the only thing that’s going to do that.

    We’ve already got plenty of breast cancer “awareness” and “check yourself” and “get your mammograms” messages out there. We don’t need more of those. We’re all as “aware” as we can possibly be. What we need is to create a world without breast cancer–period.

  6. Kitteh

    Let me start of by cyber-hugging the hell out of you. Thank you for sharing this ordeal, I know it takes just as much courage to talk about something like this as it does going through it. You, in my opinion, dealt with more than your share in recovery, and I’m willing to bet that you can take on anything in your path because of it. Plus, I think you did the right thing by getting a mastectomy, as drastic as it may seem. And you have kicked your cancer’s lumpy ass! Boobie Wednesday FTW!!!! (=^.^=)

  7. Allie Gresham

    Thank you so much for your honesty and for sharing your story. I had no idea. I am glad I know now! XOXO

  8. mjfrombuffalo

    Thank you for sharing your story, but I have to say… I’ve been on Twitter for over a year and never heard of Boobie Wednesday so I can’t help but think it’s not an effective awareness strategy. Then again, I’m sick of awareness campaigns. I have boobs. I’m over the age of 12. In the US, that pretty much means you know that breast cancer exists. Not sure what boob avatars and pink ribbons actually accomplish at this point, IMHO.

  9. Pingback: Post-Boobie Wednesday | mashrabiyya

  10. Tony

    That’s quite a story. Thanks for sharing! I am responding to this post, but I read both this and its post-BW followup.

    I am generally not a fan of “breast cancer awareness” stunts, like the bra colour on Facebook thing. Your story, however, is far more effective.

    A friend of mine had a mastectomy/reconstruction about three weeks ago, and she struggled (on her blog) with the decision for months as well. Hers, so far, was smoother than yours – easier recovery (heck, I think she might even be going back to work part-time already) – but her road isn’t over, as they aren’t sure they’re quite done.

    She’s in her mid-30s and has not had kids yet – in fact, she’s a newlywed with a wonderful husband and they want kids – and her decision was made easier by the fact that she does not yet want to be infertile.

  11. You are a strong, impressive woman. First for your determination and courage in your decision and the subsequent ordeal. But just as much in your willingness to share it with the world. Be proud my friend. You do a great service every day.

  12. mike

    I never imagined it was like that. I didn’t know the surgery was so intence and painful. I’m lost for words. I’m stunned. When I hear the local news reminding woman to self check I will think of your story. God bless. Mike G.

  13. Elizabeth

    Thank you for sharing your story, I imagine it must be difficult to share it with complete strangers.

  14. Jason Parker

    Thanks for sharing.

  15. Pingback: Let’s Talk About . . . | mashrabiyya

  16. wizardly

    When I scroll through the twitterverse and fill my mind with the brevity and alacrity of so many and occasionally glimpse the deep humanity shared by this streaming tribe I’m often wishing for a better view, an expansion of these expressions, a second and third eye opening. I’m very thankful for your willingness – your courage and compassion – to bring us this level of detail about your circumstances and journey.

  17. Pingback: Scars | mashrabiyya

  18. I am glad to find your brilliant way of writing the article. Now you make it easy for me to understand and carry out the concept. Thank you for the article.

  19. Pingback: “Boobie Wednesday” and the State of Women’s Health | mashrabiyya

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