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.

 

 

Spread The Word To Stop The Word

This post previously appeared on this blog on March 5, 2014. In honor of “Stop The Word Week,” I am sharing it again. You can visit the “Spread the Word to End the Word” website here, where you will find information on how to end the word and where you can take the pledge:

I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.

I hope you will join me in taking the pledge. And please watch this powerful PSA from actresses Jane Lynch and Lauren Potter from “Glee.”

Anna G & Anna C

Anna G & Anna C

About two years ago, I made a frustrating mistake, nothing big but one that would create extra work for me. In the moment, I said something out loud, without thinking. Thankfully, there was only one person around to hear my shocking word choice.

“I can’t believe I just did that,” I said. “I’m such a retard.”

The expression on my team member’s face is what made me realize what I had said, as she looked at me with disgust and disappointment. And then, my mind went immediately to the precious faces of the people I love so much and their families. I was instantly ashamed. How could I, of all people, have used that word? And even though I didn’t say it with malice, how hurt would they all be if they knew I had used it?

I was born in 1960 and have lived in Alabama all my life. The “N” word wasn’t part of my family’s vocabulary but I heard it, all the time, all around me. The first time I remember understanding that the “N” word was horrible and hurtful was when I was nine and someone I knew used the word in front of an African-American woman who was a guest in our home. I will never forget the look on the woman’s face … the look of humiliation and silent outrage and hurt. Even though I was only a child and was being raised in the Deep South during the height of the Civil Rights Movement, I grasped the implications of that word because I saw the effect it had on the face of a woman I knew.

The “R” word is every bit as hateful and as hurtful as the “n” word, is every bit as derogatory and pejorative as any ethnic or racial slur people invoke. The definition of “retarded” is: less advanced in mental, physical or social development than is usual for one’s age. The “R” word used to be a medical diagnosis but today, the medical community uses “intellectual disability” and the “R” word has become a convenient slang, something people use to describe others or actions in a deprecatory way. This needs to stop … like yesterday.

When our mothers told us, “Sticks and stones can break your bones but words can never hurt you,” they were just trying to make us feel better. We all know that many times, words hurt even more than punches. You’re so gay; you’re such a Jew; how ghetto is that; you’re so retarded … sure, they’re just words but when used in that context, they are words meant to imply inferiority and insult, words that are used with the intent to throw a punch more powerful than a fist.

Shauna painting in The Connection

Shauna painting in The Connection

Last week, I asked one of the girls in Project UP a question. She looked at me with panic as she frantically searched her mind for the answer. I gave her a hint and when she remembered it, her face was flooded with relief. Because she is intellectually disabled, it is difficult for her to process information as quickly as I can. She has to work ten times harder than I do just to answer a question … or write her name … or say the alphabet. This doesn’t make her dumb or stupid or inferior; it actually makes her smarter than me because she has adapted to her disability by finding other ways to cope with a world that is difficult for her to navigate. She is every bit as valuable, her feelings every bit as important as yours and mine. She told me once that she knows she has, “Something called Down syndrome” and that, “It takes me longer to learn things” but what she doesn’t know is that people use her diagnosis as a way to disparage or insult other people. I hope she never learns that.

One of our social events at The Connection

One of our social events at The Connection

We’ve come a long way with the “N” word…we’re making headway on the negative use of “gay” and “fag” and “homo” … we still have a long way to go with all the other ethnic and racial slurs we hear every day. It’s easy to use a word in a negative way to cast aspersions on a group if we don’t know anyone who belongs to that group but when we put a face with that word, it becomes personal. Before I knew people with special needs, I didn’t think about what it meant to use the “R” word but now that I know so many, I see a face when I hear that word … a child, an adult, a teenager, a parent, a brother, a sister…the faces of the people who would be hurt by the use of the word. Which makes my thoughtless use of the “R” word even worse.

I pledge not to use that word again…please join me in this pledge!

Nathan at NRG Dance Convention in Atlanta

Nathan at NRG Dance Convention in Atlanta