Tag Archives: Boobie Wednesday

“Boobie Wednesday” and the State of Women’s Health

Some time ago I wrote a piece on the Twitter phenomenon of “Boobie Wednesday” (#BoobieWed). When I first wrote the piece my intentions were to share my personal experience with breast cancer and to provide my opinion of women using shots of their bare or barely covered breasts as their avatar. In the time since that original post, almost a year now, I have written openly in other posts about my life, my sex life, and my body since my procedures. This was done in part to speak about cancer tangibly as opposed to many on Twitter who speak intangibly about the disease. Part of the choice to write so openly was assuage the fears and concerns of women facing reproductive cancers, women often racked with fear of losing their sexual appeal or the aspects of their person that define their femininity. It is the latter half of my impetus that has been and continues to be missing from the “Boobie Wednesday” movement and programs like this.

 

What should be central to programs aimed at educating women about cancer and reproductive health should be just that: education. Pink ribbon campaigns, the Komen Foundation, Save the Tatas, etc do more to shill products than to provide education and support. The primary goals of these and similar organization should be:

 

  • Providing templates and conversation points to aid women in constructing a family health history
  • Providing conversation points and important topics for women to speak with their primary care provider and gynocologist on a regular basis about
  • Frank and proper education about women’s bodies that dispels myths and encourages a woman to accurately know her body and how to care for it

 

Lastly, organizations MUST finally break their silence about life during and after treatment. When have you ever seen the Komen foundation talk about maintaining sexuality and sexual confidence post-cancer? Never. It’s never happened. Breasts can be reconstructed. Ever hear that message while you’re being sold lipstick? Clothes? Pink shoes? No, of course not. When do pink ribbon campaigns talk about sex during and after treatment? How medications and treatments can affect a woman’s libido? They don’t. The sad thing is organizations often run by women, for women behave as if women can’t handle the truth. The constant call for mammograms and participation in “Race for the Cure” never seems to include frank discussion of other reproductive cancers and health concerns. So how many American women are under educated or falsely educated about their bodies as a result of this? In fact about 60% of American women are unable to accurately answer basic questions about their reproductive organs.

 

Sure, we can start the finger pointing. We could blame our “Puritan” heritage, the lack of sexual health instruction in schools. We could say mothers should talk to their daughters about this. But finger pointing doesn’t accomplish anything. At the end of the day, organizations devoted to the health and well being of women have consistently dropped the ball. In fact this country has consistently dropped the ball about women’s health in the name of religion and morality.

 

This brings me to the heart of why I felt compelled to revisit this topic. Since the 2010 midterm elections, there has been a deluge of legislative action taken to greatly limit women’s access to contraception and abortion. In addition to making abortion nearly impossible to many women in this country, efforts to make hormonal contraception illegal has taken root across the country as well. Never since the passage of Roe v. Wade has there been such and organized and concerted effort to remove reproductive rights from women, to dictate and mandate the care a doctor will tell a woman she can have as opposed to discussing options with a patient and allowing the patient to make their own medical choices. It is as if second wave feminism never happened, as if Our Bodies, Ourselves never happened.

 

What Our Bodies, Ourselves accomplished, what Roe v. Wade accomplished was to make it legally possibly for women to be active participants in their health care. Woman could know their bodies, enjoy their bodies, decide if and when to have sex, if and when to have a child, what kind of birth they’d like to have, etc. The book arose out of a 35-cent, 136-page booklet called Women and Their Bodies, published in 1970 by the New England Free Press, and written by twelve Boston feminist activists. The booklet was originally intended as the basis for a women’s health course, the first to be written for women by women. Nancy Miriam Hawley at Boston’s Emmanuel College organized the health seminar that inspired the booklet in 1969. “We weren’t encouraged to ask questions, but to depend on the so-called experts,” Hawley told Women’s eNews. “Not having a say in our own health care frustrated and angered us. We didn’t have the information we needed, so we decided to find it on our own.”

 

Now, sadly, this country is returning to an age where doctors dictate care, tell a woman what she can and can’t do or have done to her body. The rights of a woman to be her own advocate, to speak for her own body should be essential to any and all awareness campaigns. As women’s access to health care are being diminished, let “Boobie Wednesday” serve as a weekly reminder that women have a voice and should be in charge of ALL health care decisions. This isn’t a liberal issue or some anti-church issue. This isn’t about politics. This is about human rights. It’s about not allowing women to become voiceless members of our society again.

 

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“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 . . .

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