I have been to see Miss Genny before. At that time, it was for lymphedema screening and accessment. It's a condition where you have swelling if there's an interruption of the lymph system...people with mastectomies have to protect their arms against it. But you can get it other places than the arms. This time I asked for an appointment because my radiated puckett was hard and stuck. (I named my tissue expanders after the plastic surgeon who put them there...Charles Puckett. Excellent doctor...highly recommended) I had a strong feeling that he would still look at my skin and puckett and tell me I'm not ready. I am hoping to begin the expansion part of reconstruction in about 6 weeks. I had to wait at least a year after radiation and I have chosen a year and 2 months before attempting it. I don't know what magic combo he is looking for. But I know it is not "rigid and immobile."
I felt kind of awkward, because I wasn't exactly sure what was going to happen this time. So Genny talked to me for a bit and told me I needed to "disrobe from the waist up". Yep, I thought that would happen. So I chucked the top off and sat there waiting. She turned around and I guess I surprised her with my quickness because she started to hurry out of the room saying she was going to get a "modesty top" for me. Girl friend here doesn't have to wear a bra anymore.
The modesty shirt. Any woman past age 12 that has ever been to a GYN and worn one of those paper split down the front top, knows they do not cover much of anything. Maybe your dignity, and just barely at that. So I told her not to bother. I view these expanders as simply a cosmetic part of my body...kind of like mascara. You wear it because you feel better wearing it. Well I have pucketts because I feel better in a dress or top. But I don't have the relationship with them like you do with YOUR girls. Frankly speaking, I don't have nipples. And without them, I feel no need for modesty. Isn't that weird? Genny laughed and told me "in a weird way" she understood perfectly.
In case you are wondering, yes they could build new nipples if I want them. They put a short stubby shape under the skin where looks like a nipple should go. Kind of like putting a short bullet under the skin...I honestly don't know if they have to expand it or just stretch the skin. I guess when it quits hurting they tell you its done. The surgeon does a short surgery that sort of ties that shape into that expanded piece of skin. And that is your new nipple. The aerola part is just a cosmetic tattoo. My doctor asked if I would want to build nipples too. I laughed. After 40 years of trying to deal with embarrassing "headlight" issues, why would I bother? I have considered getting the tattoos though....maybe hearts.
So. *pause a moment here to think.* What to talk about while this woman is digging around my rebuilt boob. Well we talk about my husband, his medical conditions, his job, our marriage, my job, my son, his fiance Mandy, the economy and pretty much anything else under the sun. I have told her about my sisters. I have three of them and they have given me much fodder to entertain Genny during this long hour. *evil laugh here* I told her about my parents and their passing and life without them in it. :( I shared about my church, my ladies Bible study and all my peeps in it that I love so dearly. Genny wishes she could be me. Can you imagine wanting to switch places with a cancer warrior? She tells me that "well it's obvious that you are so loved". Isn't she just the sweetest thing?
Today I told her about my adventures with my new body ball. She suggested I get one to help work this arm and chest area. I am not known for being very graceful. At one point, Mr. Rosey was calling me and two of my sisters the "Point of Graceless"...lol. Mr. Rosey enjoys watching me as he is certain that sooner or later, and he's betting on sooner - I am going to fall onto my tuckus. He's waiting with the camera.
She laughs and tells me that we are a fun couple. That we have fun together. I had to stop and consider that. And I agree. He makes me laugh. I love my Mr. Rosey. I am glad when we talk about each other, our delight for each other is reflected to them. We crack each other up. Sometimes we are sappy, sometimes we are snarky. But always there is love.
I also shared with her that her body ball exercises need a "disclaimer" with it. I will see if I can describe this adequately. I sit on the ball and then while sitting, I begin to walk my feet forward, letting the ball roll me onto my back. So the end result is that I am am draped across this ball on my back, my feet on the ground.
I ordered my own and it came in the mail yesterday. I wasn't happy. They changed the shape of the thing. It covered more which I guess is good for someone with a lot of swollen surface area. But for people like me who want to live normal and look normal it was a dead giveaway. There is NO way to disguise this one. It sat higher along the collarbone to the shoulder, then curved under the arm and around to the spine. It was good in the sense that it covered all of a radiated area. But it was also bad because it covered a LOT of area. I showed it to Genny and explained why I didn't like it. We compared both packages they came from. All descriptions and numbers matched. So we concluded that despite the appearance on the ordering site, they had changed the design. To Mr. Rosey's dismay, I negotiated a swap. It did me no good to return it if this was what they were now sending out. But it works and I really needed it. I just didn't like the new one. So I gave her my new one and kept the one I had been borrowing for the last month. Mr. Rosey was incredulous. According to him, I paid new prices for a used item. To him, it was the same as paying new price for a car but driving away with a 10 year old one. To me it was taking a bra back to Walmart and exchanging it for the bra you DO like. So we are on different sides of the fence. But I am happy with the one I now own.
I was waiting for the elevator when the doors opened. What I saw shocked me but I forced myself to smile and not react. Suddenly I felt so humbled. The young man on the elevator was surrounded by people who obviously loved him. I would have guessed him to be in his 20s. But he obviously had a serious battle with cancer. He had no face. He had eyes. But the place his cheekbones, nose, ears, mouth, both upper and lower jaws were missing. Swollen skin was pulled to the center where you would expect a mouth to be. It was cinched up around a gaping hole. I steeled myself from showing any emotion, smiled and took my place on the elevator. Their happy voices chattered about the weather and the items in the gift shop. He stood like a silent giant. He was rendered unable to speak, eat or even to breath normally now. I stood there now humiliated and ashamed. I just lost my breasts and they were trying to rebuild all of that for me. This young man most likely had some kind of mouth or throat cancer. He would never enjoy the taste of chocolate, speaking words of love, or the smell of baking bread.
Suddenly my oven mitt showing is SO much less bothersome that I thought before. Having rebuilt breasts felt like a privilege and surviving cancer is now a reason for joy.