Hello there. I’d like to take a moment to introduce, or reintroduce myself, whichever the case may be. My name is Teri Smieja, and I am a BRCA1 mutant (my fond nickname for myself and other mutation carriers). Andrea, the creator of Brave Bosom and an informative, closed group on Facebook called BRCA Commons has invited me to be the bow to her fiddle, the paddle to her boat, and the duo to her dynamic. I hope I can live up to her expectations, and yours, and my own! 🙂
A little BRCA background on me:
I was one of the first well established BRCA bloggers with my first blog post debuting in March of 2009. It’s been mostly retired since 2011, with just a few posts here and there since then.
Teri’s Blip in the Universe was its name and I documented my journey through my decisions, prophylactic surgeries, and the emotional up and downs that tend to follow those with a BRCA mutation.
I was featured in Wired magazine in February of 2010 after Thomas Goetz came across my blog and liked what he saw. He also used my story of Previvorship in his book, The Decision Tree which also came out in February of 2010.
I co-founded the BRCA Sisterhood , a closed group for women only, on Facebook along with Karen Malkin-Lazarovitz.
In November of 2013 I co-authored a book with Dr. Jonathan Herman, a practicing ob/gyn in New York. That book is titled “Letters to Doctors: The BRCA and Hereditary Breast and Ovarian Cancer Syndrome Edition“. The purpose of this book was to compile real life examples from actual patients dealing with BRCA/HBOC issues and how we feel physicians could do a better job of treating the high cancer risk patient.
After nearly five years straight of eating, drinking, dreaming and living all things BRCA I took a break. During this time, Andrea would occasionally toss out little hints that when I was ready to come back she had some ideas for us. Well, last week she mentioned it again and I didn’t even think twice this time when I answered with a big “YES”. I was ready to come out of hibernation.
My place in the BRCA world this time around will be a little different. I’ve already been through the surgeries, the complications, the recoveries, the healing. I’ve already dealt with the emotional aspects of losing my breasts and ovaries to prevent a terrible fate handed to me via my genetic lineage. Now it’s time for me to think about other aspects of the world of mutations. It’s time for me to learn more about research and data sharing, and the specifics of mutations and how they apply to all of us. I want to openly admit that I am not an expert, I have fumbled my way through the BRCA world from the day I was thrown into it, and I likely will continue to learn the same way I always have….by doing, by asking, by reading and watching, by listening and then trying to take what I’ve learned and explain it to others in what I call plain-speak. This stuff directly affects US, the mutated, the mutants, and I’d like for all of us to be able to engage in the conversations that literally affect our lives.
I’m hoping for open dialogue, for you to feel free and comfortable to ask questions. We don’t want to just talk and have you listen. We want to have conversations with you! 🙂 Andrea and I may not all know the answers right away, but we are here to find the answers. Between the two of us we are acquainted with a lot of brilliant people who do understand the scientific mumbo jumbo…. and then we’ll do our best to break it down into language that the rest of us can understand too.