Another Post About My Boobs

It’s been six months since I had a preventative double mastectomy, thanks to the BRCA 1 gene mutation that has run roughshod through the women in my family and to paraphrase one of my daughter’s favorite bands, it’s been a long, strange ride. There have been moments of hilarity and others of sadness. Sometimes, I go for days without thinking about the implants that are in my chest now and other times when I think about them constantly. There are days when I forget the rule I imposed on myself about a month after surgery – never accidentally glance in the full length mirror while naked – and when I catch that unexpected glimpse, I don’t recoil the way I did when I made up the rule.

I guess time does heal all wounds…and what time won’t heal, a good plastic surgeon will!

I had a follow up surgery two days ago, a “revision” as the plastic surgeon calls it. One of my good friends asked me why in the world I was having another surgery “at my age” so I told her to shut the hell up. She said, “You look fine with your clothes on so why bother?”

I answered, “Because sometimes I have to take off my clothes…like, I don’t know…to shower? And because sometimes when I’m in a hurry and brush my teeth while still dripping from the shower, I’m disgusted by the puckers, folds and pockets that I can see, right where my breasts used to be. And because I’m a woman, albeit an old one, who would still like to have breasts.”

And then I told her to shut the hell up again, just for good measure.

There was some aspect of cosmetic to this surgery but mostly it was done because I didn’t want to spend another day with my boobs refusing to go where I’m going or another night when the left one decides not to roll over with the rest of me. When I bend down to pick something up or to feed the cats, the boobs don’t want to stand back up, too. The type of reconstruction I had involved a small “muscle pocket,” whatever that is, with the implant snuggled in it but they didn’t feel snuggled. The way the damn things were moving around in my chest, I was afraid if we didn’t do something to anchor them better they might end up on my back.

The surgeon re-tucked the bottom incision under each breast, making them tighter and less likely to go their own way. It seems like the surgery might have done the trick because this morning when I bent forward to wrap my wet hair in a towel, my boobs were with me by the time I was upright. As an added bonus, the surgeon suctioned some fat from my abdomen and injected it around the implant to serve as a cushion. I told him to feel free to do any sculpting he wanted while he was at it but I don’t think he did. I’m black, blue, yellow and green from my upper chest to my lower abdomen but even through all the bruising, I can see that I still don’t have a flat belly…I’ve never had one but an old gal can dream, can’t she?

Another friend suggested that I had this surgery purely for vanity’s sake. I couldn’t believe she would say that to me because she knows I’m not the slightest bit vain.

Okay, I’ll admit it…I am sort of vain.

But it wasn’t vanity that drove me back to surgery. It was the discomfort, the rolling implants, the frustration with not being able to find a comfortable sleeping position, the implants stubborn refusal to cooperate with my movements that made me want to “tweak” (the plastic surgeon’s word, not mine) my breasts one more time. And it was the hope that by securing them better, I might be less aware of them…every minute of every day.

When I first wrote about my conflicting feelings about having a preventative mastectomy, I received hundreds of messages from women around the globe, women who are facing the same tough choices I had or women who have battled cancer. One woman wrote to me, “The entire process – the decision-making, the surgery, the recovery – will take a physical and emotional toll on you that no one can prepare you for.” Boy was she ever right! There are still times when I want to cry over the loss of my breasts – and sometimes, I allow myself to. But most of the time I can fend off the melancholy by reminding myself how lucky I am.

Lucky that I found out I carry the gene mutation, lucky that I have a supportive husband and children to nurse me back to health, lucky that I dodged the breast and ovarian cancer bullet that was headed straight for me. At those moments when I feel sorry for myself – like the first time I wore a swimsuit or the first time I bought new bras – I remember what the pathologist told me a few days after my mastectomy; that my left breast was riddled with pre-cancerous and atypical cells and that I would have definitely found a lump in two years or less. So lucky.

Now that I’ve been through the pain and indignity of a mastectomy, I don’t know how women who have cancer do it…how they suffer through a surgery so awful and then immediately go to war with an enemy as insidious as cancer. Sometimes, I feel guilty that my fate was easier than theirs, guilty that I’m complaining about implants that bob around while they are fighting for their lives. My friends who have cancer tell me they are glad that genetics have advanced to this point and they are happy we have options that were unheard of just a few years ago.

The doctor says it will only take three to four days to heal and that if I’m not satisfied with the result, he can “tweak” some more but I’m done with tweaks. As long as we’re headed in the same direction, my boobs and I will be just fine from now on.


Mastectomy, Pathology Results And A Rhetorical Question

So it’s been one week since my preventative double mastectomy with immediate reconstruction because I have the BRCA gene mutation and it hasn’t been that bad. If having my intestines resected multiple times through a 13″ incision straight down the middle of my abdomen was a 10 on the pain scale, I’d rate this about an 8. Lifting my arms to brush my hair is impossible and so is reaching for the coffee cups in the kitchen cabinets in the morning. But its getting easier with every passing hour and I’m reminded again of the amazing resilience of our bodies to heal and mend. I stayed in the hospital two nights, got home late Thursday afternoon and have been taking it slow since then.

The plastic surgeons at UAB were quite pleased with themselves and they should be. The nipple-sparing technique they employed was successful, the surgery lasted less than six hours, the implants went in with no problem and each time they removed the bandaging in the hospital, they oohed and ahhed about their work. “Textbook” is how they kept referring to my chest and “This is the outcome we wish we could achieve for every woman,” they said. Clearly, they know something I don’t know because right now when I look at my chest, I can’t imagine that these will ever look like natural breasts. They have assured me that it will take a few months for things to settle into place and that they can make tweaks and adjustments without any additional surgery.

Some people suggested to me that having a preventative mastectomy was the same as having cosmetic breast surgery but I can assure them that it is not. Every bit of tissue was stripped away from my chest – the doctor called it “skeletonizing” the breast – and the result looks like what you would imagine…lots of swelling and bruising, odd puckers and folds on the sides and under my arms and at this point, I can’t imagine ever wearing a low cut blouse or bathing suit again. Every time I look in the mirror, I tell myself that at my age, I shouldn’t care. But I do. And I imagine most women who have a mastectomy care, too.

This morning, I returned to UAB for my first post-op check up and was thrilled that the doctor removed the drain tubes, which has me feeling much better already. He gave me a chest band to wear, something he says will help the implants drop to a more natural position and he emphasized that there are other tools in his arsenal, like fat grafting, that can improve the final result. It’s a process, he reminded me.

Knowledge is power and timing is everything. Once I had the knowledge that I carried the BRCA gene mutation, I was able to make an informed decision that was right for me. Even though I knew the risks – an 87% chance of developing breast or ovarian cancer within six years – it turns out my risk was even greater than that. The pathology report showed that all the tissue in my right breast was clear and healthy but the tissue in my left breast contained “a large concentration of atypical, pre-cancerous cells.” The breast surgeon told me on the phone that if I hadn’t had a mastectomy, I would have developed malignant breast cancer in my left breast within the next 12 months. I am so glad to know this because I’m sure I would have wondered for the rest of my life if this surgery was necessary or not. And I’m thankful to my husband, doctors and friends who urged me to make this decision now. If I had waited much longer, it might have been too late.

Yesterday, I read Angelina Jolie’s New York Times Op-Ed about her cancer scare and the surgery she had to remove her ovaries. Like millions of women, I am grateful for her willingness to talk about women’s health issues in such an intimate way. As she points out, these decisions are highly personal and are different for each of us. Like her, I hate to think of the young women who haven’t had children yet who are faced with these tough choices and am overcome with relief that my daughter does not have this gene mutation. The decision to remove my ovaries back in October was a no-brainer for me, but I’ve already had two children and have already gone through menopause. Women who haven’t had children or are too young to be forced into menopause by the removal of their ovaries have much tougher choices to make than I did.

As I thought about Angelina and her decisions, a rhetorical thought came to me. Why aren’t there more female plastic surgeons? And if there were more women plastic surgeons, would there be any impact on cosmetic or reconstructive breast surgery? I posed my rhetorical question to my plastic surgeon today and he said, “That’s a very good question and yes, when men are crafting women’s breasts, they are doing this with a particular bias.”

We talked about how for decades cosmetic and reconstructive breast surgery has been done primarily by men and how the cosmetic procedures we have done to our breasts are somewhat responsible for the perceptions about what constitutes “great” breasts. We talked about our culture’s obsession with breasts and about the taboos that have long been held regarding breasts, from surgery to breastfeeding.

I wonder…does a female plastic surgeon have a different take on what a good outcome looks and feels like?

Would our culture’s perceptions about breasts shift – even slightly – if the majority of breast augmentation or reconstruction was done by women instead of by men?

Am I looking at the results of my surgery through a woman’s eyes or through a man’s?

Or do men and women see the same thing when they look at women’s bodies?

Please comment below if you have an opinion on my rhetorical question! And thank you all for your prayers and support!

My Mastectomy And A Note

Tomorrow morning at 6:00 a.m., I will check into UAB hospital for a preventative double mastectomy with reconstruction, a surgery that may take as long as ten hours. I’ve been quite anxious about this, dreading the pain and the interruption to my life. Of course, I’m grateful that I can do this before my inevitable breast cancer diagnosis and know that I’m lucky the BRCA gene mutation test allowed me to take matters into my own hands. Even with the greatest news of all…my daughter did not inherit the gene mutation and will never have to go through this process, I haven’t been a lot of fun to be around the past few weeks as the tension has built.

I was diagnosed with Crohn’s disease when I was 26 and have had a fair number of surgeries because of that…intestinal resections, gall bladder removal, a hysterectomy…and then both of my children were C-sections…with 8-inch vertical incisions up my belly. When I had my ovaries removed in October, they weren’t able to get to them using a laproscope so the same incision site was opened yet again. Then there was the back surgery I had three years ago when a disc ruptured and too many procedures under anesthesia to count, along with the cosmetic breast reduction surgery that was my 50th birthday gift to myself. If only I had known four years ago what I know now. The plastic surgeon who will operate on me tomorrow said it is actually to my advantage that I’ve had breast surgery before…things were lifted back where they used to be…which increases the chance that the nipple-sparing technique he uses will be successful. But still, I’ve been shaming myself over my vanity.

I’m a surgical veteran and know the drill…the pain, the helpless loss of control, the indignity of hospital stays. Basically, I know that I’m about to have a pretty wretched couple of weeks.

I’ve done my homework, read up on the BRCA mutation and my surgical options, have had repeated consultations with the breast and plastic surgeons who will be working on me tomorrow. I’ve followed hundreds of message threads from the multiple Facebook groups for previvors I’ve been invited to join since writing about my mastectomy decision. I’ve talked to my mother and friends who have had mastectomies. About three weeks ago, I decided I had taken in all the information I could…no more because I was tired of second-guessing and what-iffing.

I have wrapped up the hot button items on my “to do” list at Merrimack Hall, have delegated everything I can think of and have to admit, for a control freak like me, it’s sort of liberating to have no option but to turn loose of things. I’ve cleaned my house, paid the bills, tried to leave everything in an orderly manner…more for my benefit than anyone else’s. I bought mastectomy bras and button-front tops with pockets to hold drainage tubes. And through all the planning and preparation, I’ve had a knot the size of Texas in the pit of my stomach and a constant feeling of dread.

On my last afternoon in the office, I made a final sweep of my desk, with my teeth clinched and my nerves frayed. Just when I thought I would come unglued if I found one more thing I had neglected to do or delegate, I found this:

Chelsea's letter

My friend, Chelsie, made this for me and attached it to the holiday goodies she and her mom had given me for Christmas. I saved it because I intended to write a post about this note, one more thing I hadn’t done. I couldn’t have found her message at a better moment in my life.

If you need a slight translation, Chelsie wrote, “Be happy. You I love. Smile. Chelsie.

The pit in my stomach lifted a little bit. And I smiled. In Chelsie’s world, all you need to do to be happy is just to…be happy. Smile. That’s all it takes.

Chelsie…the adorable one in the middle!

Chelsie…the adorable one in the middle!

Chelsie has written me lots of letters and she always ends them the same way: Debra, you I love. Now, to some people, it may seem that Chelsie has her words backwards because the rest of us would say, “I love you, Debra.” But it occurs to me that when we say “I love you” to someone, that makes it all about us…”I” feel something about you and this sentiment has everything to do with “me” and actually nothing to do with you. The way Chelsie expresses her love makes it all about the other person. Debra…you I love.

So tomorrow, I will do something I don’t want to do and I will have a rough week. But I will try to smile because Chelsie told me to. I will be happy because Chelsie said I can. I will remember that Chelsie’s love for me isn’t about HER feelings. Her love is about ME. Chelsie…you I love, too.

How bout we all take Chelsie’s advice! Facing something tough and scary? Smile! Feeling down and defeated? Decide to be happy! If Chelsie can do it, so can we.

To everyone who is thinking of me and praying for a speedy recover, I thank you. Your support has given me courage. And to Chelsie and all of my friends at Merrimack Hall…YOU I love.



My Mastectomy Decision

This post is the second in what will be a series, documenting my experiences with the BRCA gene mutations and pending medical decisions. Thank you for following me on this journey, and please continue to send me your stories via email or in the comments below. 


Dear Readers:

Two weeks ago, I wrote a post about my conflicting emotions about whether I should undergo a preventative mastectomy and The Huffington Post published it — you can read that post here. Hundreds of people from all over the world have read it, hundreds have sent me comments and emails and I’ve been introduced to a new “sisterhood” of women. Turns out, there’s a word for people like me who are BRCA positive: We are “previvors.” I like the sound of that word: surviving something by preventing it from happening. Your support has been overwhelming and I will be forever grateful to the women — and men —who have reached out to offer their advice and have shared their experiences.

One of the comments I received was from a woman who said, “I had a preventative double mastectomy 8 months ago and I still second-guess myself. Yes, I know I had an 85% chance of developing breast cancer but that means I also had a 15% chance of not developing it. I’m glad I had the surgery and like my new breasts but I guess I will always wonder … did I do the right thing? There something about having a choice that makes this more hard.”

I agree with her. But that’s the thing about being given a choice … eventually, you have to choose.

It’s been a busy two weeks. I’ve had consultations with general and plastic surgeons locally and out of town. I’ve had a breast MRI and discussed the results with my gynecologist. I even got to meet with the President of the Hudson-Alpha Institute for Biotechnology, where a team of geneticists are working with Dr. Mary-Claire King and others to further study genetic mutations and cancer. Stay tuned for details on what I’ve learned from them, which I will write about in a separate post!

Bolstered by your comments and encouragement, I sought second and third opinions. I have an existing chronic health condition that requires regular infusions of a drug that suppresses the immune system, an important thing to factor in as I consider any possible surgery. In my hometown, I was told that my only option was to have three surgeries and that nipple-sparing was not an option. That didn’t sound right to me. And then two different doctors said things that I found objectionable, to say the least.

One doctor said that there was no reason to think that losing my breasts will have any impact on my intimate relationship with my husband, to which I replied, “The ‘girls’ have always been very involved in my intimate life with my husband, thank you very much. If we were talking about your penis, would you say a thing like that?”

And a local plastic surgeon — yes, a plastic surgeon (who probably makes piles of money every year performing cosmetic breast surgeries) — said, “Why would you be concerned with saving your nipples? If you are already going to mutilate yourself, why would you run the risk of leaving a nipple that might become necrotic?”

I think I’ll pass on a plastic surgeon who says breast reconstruction is mutilating myself.

Eighty miles south (but 25 years ahead of us) in Birmingham, Alabama is a highly regarded cancer center. I met with the surgical team who performed preventative mastectomies on two of my cousins who are also BRCA positive. Both of my cousins had nipple-sparing breast removal and reconstruction in one surgery and both of them are thrilled with the result. The breast surgeon told me that she wants to save my life by preventing breast cancer but she also wants me to be happy with the outcome. She was well versed in genetic medicine, explained the options in layman’s terms I could understand and did not minimize my fears or concerns. I have decided that she will be my surgeon and am waiting for my first consultation with the plastic surgeon who works in collaboration with her. Pre-op orders are starting to come in, I will travel to Birmingham several times over the next few weeks and we are shooting for a mid-February surgery date. I realize that it is a gift to plan this operation, as opposed to the rush to surgery required when cancer is present.

So, yes, I’m going to lose my breasts and no, I’m still not too happy about it.

I wonder if I would feel differently if I had to lose another body part … would it matter as much to me if it were an arm instead of my breasts? Because it does matter to me, a lot, even though I’ve made the decision and will not change my mind. And no matter how hard I try, I can’t seem to wrap my head around the notion that they will be gone. Women have told me that the entire process — the decision, the surgery, the recovery — takes a physical and emotional toll even greater than they anticipated. Which is exactly what I’m afraid of. Surely by the time of the surgery, I will be ready. I’ve come a long way in just two weeks so in another couple of weeks, maybe I’ll be a “rock star” level previvor. At some point, I imagine I will stop asking questions because there does come a time (for me) when too much information becomes overwhelming.

In just two weeks, I’ve come to terms with understanding that my genes long ago predetermined the fate of my breasts. The BRCA mutation is just one of the many flaws that were with me from the beginning, mapped out on my genome somewhere near the gene that gave me Crohn’s disease, maybe close to the gene that prevents me from being able to understand simple math and next to the one that makes me so impatient and impulsive.

But still, the first thing I think every morning is, “In about 8 weeks, I will be having major surgery to remove and reconstruct my breasts.”

I’m just one woman among thousands who is making this decision, a very personal one that is different for each woman. Writing about this process is helping me cope with it. Connecting with women who have been where I am is helping me understand it. Talking with my husband is helping me accept it.

Knowing I am not alone is making all the difference.

With gratitude,


Repost: 4 Reasons Why I Don’t Want to Lose My Breasts

The following post was originally published on my blog at The Huffington Post.  I am reposting it here for archival purposes.  After testing positive for BRCA1 gene mutation,, I decided to write this post – and have subsequently been inundated with stories and personal accounts of hundreds of women just like me. 

Because of this, I will be chronicling my medical journey — and ultimate decision about whether or not to opt for an elective mastectomy to remove breasts — on this blog.

 Please follow me on my path, and continue to send me your stories via email or in the comments below.


The surgeon and I talked for a long time.

He looked carefully through the surgical notes from my previous breast surgery and at the films from my most recent mammogram. Then, he crossed his arms over his chest, leaned back in his chair and peered at me over the top of his bifocals.

Firmly, but with compassion, he said: “Your breasts have to come off.”

He saw the tears welling up in my eyes, tears that surprised me because after talking with a genetic counselor and five other doctors, I knew this would be his verdict.

He leaned forward, took my hands in his and said: “When is the best time to remove your breasts? The day before you get breast cancer. We know you will develop breast cancer, but since we don’t know exactly when that will happen, we need to take them off now.”

I found out in July that I carry the BRCA 1 gene mutation. My mother also has the mutation and is a 13-year breast cancer survivor. I pray daily that when my daughter’s results come in, they will be negative. I had my ovaries removed three weeks ago, but I’m having a hard time with the decision to remove my breasts.

And so, like thousands of women today, I’m offered a choice: alternate mammograms and MRI’s every six months or undergo an elective mastectomy, which would reduce my risk of developing breast cancer from its current 85% before I turn 60 (in a mere six years) down to about 5%.

Me, my mother, and my daughter in 2008.

Me, my mother, and my daughter in 2008.

Somehow, I had the impression that an elective mastectomy was different, less invasive than one performed when cancer is present. I convinced myself that the surgery would be more like the cosmetic breast reduction I had four years ago.

Well… I was wrong.

I do plan to talk with other surgeons, but the picture this doctor painted for me included drainage tubes and extenders, multiple procedures over an 8-12 week timeframe, and nipple reconstruction or tattooing. The conversation and pictures he showed me — and what I interpreted as his opinion that reconstruction should be a low-priority concern — was not what I had anticipated.

Given the odds, I will probably have the mastectomy within the next six months. But I don’t want to do it and here’s why:

  1. I’m scared. And I feel so guilty for feeling scared because I know dozens of women — including my mother — who have survived breast cancer thanks to a mastectomy, radiation and/or chemotherapy. I see them now… cancer-free, strong and proud, grateful and resilient… and feel like a jerk that I’m even questioning the gift of having an option they didn’t have. And then I think of the beautiful women I know who lost their war with breast or ovarian cancer, women who would have given anything to have the choice I have and wonder…what the hell is the matter with me?
  2. I’m frustrated that there aren’t better options for reconstruction and I’m angry that we don’t have a cure yet. If big pharma can come up with drugs that give men erections for up to four hours, why can’t they do better for women? Our mothers, daughters and sisters are battling cancer in record numbers, but the scientific community can’t seem to keep up… or maybe issues like erectile dysfunction are higher on the priority list. People around the world are donating money, running in races, wearing pink ribbons, lighting luminaries and advocating for women’s health issues. The scientific and medical community should lead us in this fight and step up their game… or at the least, come up with better options than what we have now.
  3. I’m worried about what my husband will think of me. Which is silly, because we’ve been married for nearly 30 years and I know he wants me around for at least another 30. Whether my husband will still find me attractive should be the last thing on my mind. I should feel empowered to have information that could save my life and yet… I’m hung up by vanity and pride. Alan says he wants me to have the surgery… but he wasn’t with me at the surgeon’s office. What if he feels differently when he’s fully informed?
  4. My breasts are an integral part of my sexuality and my identity as a woman. The thought of losing them is sad because it means that an important chapter of my life is being closed forever. When my breasts first developed, they told me I was becoming a woman. For about 30 years, they reliably signaled each month that it was time for my period. Before I had any other symptoms, my breasts told me that I was pregnant. My breasts nourished my babies. I’m not a beautiful or sexy woman, but my breasts make me feel feminine and attractive. They have done their job well all of my life and I will miss having them… and then here come those guilty feelings again. Every woman who has a mastectomy probably feels this same way… but they also have to cope with life-threatening cancer at the same time.

I tell myself to get a grip because I’m acting like a wuss. I remind myself of what my students who are medically fragile have to endure on a daily basis and realize I’m being selfish.

I think of all the women who didn’t have this heads-up that disaster was looming just around the corner and I know I’m a fool for hesitating for even one second.

I don’t like to gamble and yet, that’s exactly what I’m considering. I’m thinking of rolling the dice and hoping I get lucky… and don’t develop breast cancer. If I’m right, the prize is that I get to keep my breasts and if I’m wrong … well, I lose everything. If I wait until I get breast cancer, there won’t be any choices … only toxic drugs and radiation and desperate attempts to save my life.

How can I be trying to come up with reasons why it would be OK to keep my breasts instead?

So, today, I’m going to let myself cry, because I’m scared and ashamed of myself.

I will cry because even though I thought I knew what women with breast cancer have to endure, I didn’t have a clue.

I will cry because I am in awe of their bravery and resilience.

I will cry because I’m afraid I’m not woman enough to do what they have done.

Today I will cry because I don’t want this gene to be a fault that I unknowingly handed down to my children.

Tomorrow, I will give thanks for this chance to control my own fate. Tomorrow, I will ask my friends who have gone through this for their advice. Tomorrow, I will begin the search for other surgeons who might offer better options. And tomorrow, I will remind myself that I am not defined by my physical appearance or my breasts and that nothing can take away or diminish my womanhood.

If you are considering or have already had an elective mastectomy and are comfortable talking about it, please comment below. Your experiences, your advice and your input could help me and the thousands of women who read this blog.