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UNDER RE-CONSTRUCTION: My "Orange Roadside Cones" Were Really PINK PARTY HATS — In Disguise

I was 39 years old and was dreading my 40th birthday because of all that it seemed to represent — sagging breasts, the middle age spread, droopy eyes and other acts of gravity that most women try to defy. These trivial worries seem so insignificant to me now. Little did I know that I was about to have a real “mid-life crisis” that would become the worst, and yet one of the best things to happen to me in my life.

I don’t know why I thought I was destined to have it. I didn’t have any risk factors except being a woman who had breasts.

As a young woman, I worried about breast cancer and was sure that I was going to get it at some point in my life. I don’t know why I thought I was destined to have it. I didn’t have any risk factors except being a woman who had breasts (not great ones but they were there). Like many women, I had fibrocystic breast disease, so when I found a sore lumpy area one night I shrugged it off. After all, my last mammogram was normal and a needle aspiration of a cyst one year ago was benign. When it was still there a month later, I decided to see my physician so that I could be reassured that it was just another false alarm. That was the beginning of more mammograms, an ultrasound, two needle biopsies, and four long days and nights of waiting to hear that I had a small malignant mass as well as several areas of microcalcifications in my left breast. A modified radical mastectomy with lymph node dissection was recommended.

I am a healthcare professional who works at MetroHealth Medical Center, a large teaching hospital in Cleveland. Even though I thought I knew a “little something” about cancer, I soon found out that I knew “nothing.” There is something to be said about your emotions taking over when you are dealt with a blow such as this, regardless of your background. I was devastated, and I don’t think I stopped crying for two months.

I didn’t remember much of what was said as I was too overwhelmed and cried throughout the entire visit.

As part of the pre-operative assessment and planning process I was referred to Steven L. Bernard, MD, a plastic surgeon for reconstruction. He explained the various options to my husband and me. I didn’t remember much of what was said as I was too overwhelmed and cried throughout the entire visit. I had some big decisions to make. Should I have an implant or have one of those procedures where they move your abdominal fat and muscle up to your chest to make a new breast (TRAM flap)? That sounded pretty barbaric to me. At this point, I found myself searching out every person that I knew or heard of that had gone through this process before me. I wanted to talk to women who had had breast reconstruction. What did they choose? Why did they choose it? Were they happy with the results and would they do the same thing again? I wanted to know what a reconstructed breast looked and felt like, and I wanted to know if my plastic surgeon was any good at it.

I did find someone who had implant reconstruction who was kind enough to show me. Her results seemed good enough to me at the time. I also found someone whose mother had reconstruction by my surgeon and was very pleased with the results. I then made the decision to have implant reconstruction as it would be the quicker route and I needed to get on with it. I had the mastectomy with immediate placement of a tissue expander that would eventually be converted to an implant. I showed up at the surgery clinic weekly for four weeks to receive saline injections into the expander to stretch my skin. The goal was to overstretch it so that the area under my chest muscle would accept an implant and possibly even allow for some “droop.” The entire expansion process was painless. I referred to my expanded breast mound as a “torpedo,” because that’s just what it looked like. A few months later I had the conversion and soon after it was time for the nipple reconstruction.

I don’t know why, but I had a problem with this step of the process. Again, I needed to know what this would look like. I asked if there was anyone that I could talk to about this. I had already been suggesting to my plastic surgeon that I thought it would be helpful to have a peer network for support, and that I would volunteer to help women who needed to make reconstruction decisions in the future — that is, when I was all put back together again.

We wore pink party hats at some of our appointments to celebrate our lives and our transformations from ugly ducklings to swans.

As if fate would have it, another woman about my age, who also worked at the hospital, went through this same ordeal shortly before I did. She had expressed the same thoughts about sharing. She had a TRAM flap and had finished the nipple reconstruction. We got together, she showed me her TRAM and nipple, and I showed her my implant. That was the beginning of a great partnership. We actually began to have fun with our misfortunes. We went to appointments with Dr. Steve (our plastic surgeon) together and even scheduled outpatient procedures together. We coped together. Best of all, we wore pink party hats at some of our appointments to celebrate our lives and our transformations from ugly ducklings to swans (at least in terms of our breasts)! Dr. Steve wore a pink party hat too.

While both of us work at the hospital, neither of us knew our plastic surgeon before, or how he would change our lives and the lives of many other survivors. While he is one of the most empathetic and skilled surgeons I have known, he recognizes his limitations when it comes to truly understanding what women go through. My friend and I became a team for him. We made ourselves available, on a volunteer basis, to see his patients who were facing the same emotional roller coaster that we had. We showed them our reconstructions, let them ask any questions they wanted, and even let them feel the difference between the two options. Dr. Steve was always available to answer the questions that we could not, or should not, answer. Best of all, they saw his work. We immediately bonded with these women. While we didn’t always know exactly what they were going through, we knew what we went through and we were able to give them some sense of hope. We would visit them after surgery and give them a survivor teddy bear. We offered suggestions on how to deal with post-operative drains, and the easiest way to take a shower, as only a survivor would know how. I guess it gave us a purpose.

My implant was converted to a TRAM almost three years ago, and the pink hat parties started all over again.

After seeing my friend’s TRAM flap over and over again for a couple of years, I decided that I wanted that type of reconstruction as well. While I was initially pleased with the implant, I started to have some issues with contracture. I also realized that I was a young woman that was living life, and I wanted a softer, more natural appearing breast. My implant was converted to a TRAM almost three years ago, and the pink hat parties started all over again.

It is my belief, that having reconstruction helped me to endure the treatment for this disease. I am now able to address both implant and TRAM reconstructions with patients as a peer. Having watched my plastic surgeon perform all of the procedures in the operating room, I now really understand what I went through physically and what is coming down the road for them. Breast reconstruction is an amazing work in progress and that’s what I tell these ladies. I'm available to offer support during their down times because I certainly had many of my own. It is important for them to know that it gets a little better every day, at least this part of the breast cancer experience.

I have a circle of new friends, 30 in all, because of my volunteer work. And while it seems cliché, I have a new purpose in life. I support breast cancer awareness and activities. It is important for women to know that breast cancer does not have to be a disfiguring disease. The knowledge and awareness of reconstruction should give women the courage to participate in screening programs for early detection. I am seven years out, and I am doing well today because my cancer was detected early. Most of all, I am committed and passionate about spreading the word.

Some people don’t understand my willingness to show my scars and to share my experience with newly diagnosed women.

One of my early Race For The Cure® teams wore party hats to celebrate life. The survivors’ hats were pink. Everyone could see us in the crowd and we even made the television coverage that night. Some people don’t understand my willingness to show my scars and to share my experience with newly diagnosed women, but I know that this new group of breast cancer survivors appreciate it. Others laugh at my pink party hat theme. That doesn’t offend me. I hope they never need a party hat of their own.

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