Once upon a time, Matt and I sat down for brunch on a lazy Sunday at a new restaurant, and I decided I wanted to order an omelet with a pancake on the side. The problem with this was that there were no pancakes on the menu…only waffles. I asked the waitress, “What if we just made a little side pancake out of the waffle batter?” Not only did I get my side pancake, they gave me a whole stack of little pancakes and only charged me $2. Matt began calling me Side Pancake….and a new nickname was born, out of the many nicknames that we have called each other over the years. It is one of my favorite nicknames because we found a new label for something I love to do: ordering what’s not on the menu.
Now…breast reconstruction comes with a whole menu of options and decisions. These decisions can be overwhelming and exciting all at once, because you get to decide how you want your body to look after you lose your breasts. Many of my fellow BRCA+ Mutant Previvors choose to remove their nipples because ductal cells carry a higher risk of developing breast cancer than any other tissue in your breast. However, the breast’s areola does not contain these ductal cells, and removal of the nipples+areolas ends up creating a much larger horizontal scar along the breast.*
My team of doctors and I had discussed a plan well in advance of the surgery, which included removing my nipples. However, I found myself rethinking my decision the weekend before the surgery. Less than an hour before they wheeled into the operating room, I told my doctors I wanted them to remove the nipples but keep my areolas in tact. They looked at me sideways because it was weird – most women go with all or nothing…nipples or no nipples. I made my case to them, we negotiated, and I agreed to the risks and benefits. Now…I’m so happy I spoke up and decided to make everyone’s lives more difficult.
I ended up with exactly what I asked for: areolas with no nipples and…as it turns out…I look like I have two perfect pink side pancakes on my bosoms – and my neat little scars from the incision smile back at me in the mirror… ( :
Ladies and gents, my hope for you is that you will take something valuable away from this story, even if you are not considering having your nipples removed because you are a mutant. Here is what I took away from the experience…
- Speak up and ask for what you really want. Ask tough questions. Do your research. Don’t blindly accept the options you are given….I say this because I think the more we speak up and ask for what we really want, the more we will get what we need….both in health and in life. I was lucky to have two amazing doctors who were willing to work with me to come up with an acceptable solution. If you don’t have a doctor who listens – find a better one who will listen to you.
- Always ask nicely…and be specific. You may not get exactly what you want when you ask, because better options don’t exist. But speaking up – and asking nicely – will at least ensure that you get a little closer to what you desire….and in some cases what you need.
- Stop Trying to be Perfect. I love my scars – because they make me even more the person that I already am. My scars are a daily reminder that I saved my own future…which is why I’m sharing this very personal story. Some people believe that embracing and sharing imperfection/vulnerability is the very way you find wholeheartedness. I can say from experience that embracing vulnerability is the very thing that makes you feel connected to others – regardless of what others think of you.
- We are more than the sum of our parts. So much of breast cancer awareness focuses on one body part – and the more I learn about this disease, the more I find that we need to move beyond a focus on the breasts.
Also, I dare you to order a side pancake the next time you got to brunch and you don’t see it on the menu.