I’m pleased and excited to feature a guest post today by Teri Smieja, my friend, BRCA+ sister and co-author of the new book, Letters to Doctors: Patients Educating Medical Professionals through Practical True-Life Experiences. Anyone who knows Teri realizes what a dedicated and committed advocate for many she truly is. BRCA+ or not, I know you’ll appreciate reading her story. And again, BRCA+ or not, after you’re finished reading be sure to sign up for my giveaway and a chance to win a FREE copy of Letters to Doctors for yourself or to donate.
My BRCA Journey
by Teri Smieja
It was a dark and stormy night. No, wait, let me start over. It was actually a warm and sunny day – outwardly anyway. Inwardly things were tumultuous. Tumultuous is not a word I say out loud often, if ever, and honestly I may not even be able to pronounce it properly. Tumultuous, however oddly the word rolls off my tongue, is the definition that describes exactly the feelings I had on the day I received the call from my doctor’s office telling me my BRCA genetic test results had come back with a positive notation, or rather, a deleterious mutation.
adjective \ tu̇-ˈməl-chə-wəs, tyu̇-, tə-, -chəs; -ˈməlch-wəs
: loud, excited, and emotional
: involving a lot of violence, confusion, or disorder
I hung up the phone and drove down to my doctor’s office in a teary-eyed haze to pick up my test results. The receptionist smiled at me awkwardly while handing me the piece of paper that would forever change my life.
I numbly took it from her and with a question mark on my face mumbled a polite, “Thank you.”
On immediate hindsight, it seemed a weird thing to say to someone handing me a piece of paper which proved I had inherited my mother’s deadly BRCA1 mutation. My hindsight further down the road would show me that “thank you” actually was the best response to learning the answer to the questions: Why did one of my aunts and my mother get ovarian cancer, and will I get it too?
The answer to my questions was hidden in my DNA. While I was initially tumultuously terrified while navigating the BRCA world as a total newbie, non science, non medical type of person, I eventually stumbled into enough of the right people who would help direct me to the appropriate pathways on the BRCA labyrinth.
noun \ˈla-bə-ˌrin(t)th, -rən(t)th\
: a place that has many confusing paths or passages
: something that is extremely complicated or difficult to understand
I had a lot to learn. At the time, I was still living in Ridgecrest, CA. Out in the middle of the desert, I felt like a lone coyote with no one to guide me in the right direction. Somehow or another this small town desert girl not only managed to navigate the labyrinth; she made it her own.
I spent hour upon hour online reading about all things BRCA (at the time such things were actually hard to find), reading and re-reading until I could make sense of it. In addition to visiting the ob/gyn who had delivered my bouncing baby boy only months earlier, I also visited numerous other doctors including genetics experts, a gynecologist/oncologist BRCA specialist and finally a breast surgeon and plastic surgeon all the way down in New Orleans.
I took the things I was going through and learning about and wrote about them in my now mostly retired blog, Teri’s Blip in the Universe. I blogged extensively through my emotionally charged journey. I was scared. No, I was terrified! I had one son in his last years of high school and one son who was just a few months old. I was trying to navigate this world along with my husband, and neither one of us had any real prior knowledge of what any of it truly meant. I did my best to write from my heart. I tried to take the most confusing aspects of the BRCA world and decipher it all into language the normal person could understand.
My blogging soon intertwined with the growing network of other BRCA positive people who I was making connections with on Facebook and eventually, with the help of Karen Malkin-Lazavoritz and several of our close BRCA positive friends, the support group, the BRCA Sisterhood on Facebook was born – err, um, created. It is now the largest, most active BRCA support group on Facebook and membership is growing daily.
During this time I met Dr. Jonathan D. Herman through Facebook. Like me, Dr. Herman was big into BRCA advocacy and just wanted to help people who were at high risk for hereditary breast and/or ovarian cancer. Dr. Herman is an ob/gyn in New York who in his ‘spare time’ travels around the country educating other doctors about hereditary breast and ovarian cancer. When he called me one day to say he wanted me to write a book with him, my heart sort of caught in my throat. I must admit I do suffer from a bit of Imposter Syndrome – Google it, it’s interesting! My I.S. made me think I couldn’t do it, but my current MOA was to say very enthusiastically “YES!”
It took us a few years and a few paradigm shifts with the direction we wanted to take with our book. In the end, what we came up with was Letters to Doctors.
Dr. Herman and I gathered letters from real members of the BRCA/HBOC (HBOC means hereditary breast and ovarian cancer) community. These letters reflected thoughts we all wished we could have shared with our doctors. Some shared letters that were downright angry. Others were full of gratitude. Some were a combination of both. One thing they all have in common though, is the ability to help doctors better understand how to identify and treat their high-cancer-risk patients.
Letters to Doctors is an easy to read format that’s hard to put down. Our hope with this book is to literally change the way the medical community treats all of their patients. This book has the ability to save lives. Not just theoretically; it actually has the power within it to save lives.
And this is what we want to accomplish with Letters to Doctors – save lives!
All profits of Letters to Doctors are going right back into BRCA/HBOC education and charities. We have a bigger goal in mind than making money. We want our grassroots effort to change the way doctors are practicing medicine, so that more people have a chance, like I did through genetic testing, to take their health into their own hands and ultimately to make better choices regarding their health decisions.
We are encouraging everyone to buy two copies of Letters to Doctors. One to keep for yourself and one to give to your doctor.
Two and a half years ago my husband was offered a job at the Pentagon in Washington, DC and here we are now, living happily. I’m not the same person I was a few years ago. Learning about my BRCA mutation changed me. It turned me into a more caring, giving, loving philanthropist-type of person who my family can be proud of – who I can be proud of. I genuinely care about the world and helping others. Collaborating with Dr. Herman on this book is one way I can do this.
I know that together we can make a difference.
Together we all can.
Together we can save lives.
Thank you for sharing your story, Teri!
To enter my giveaway for a chance to win a FREE copy of Letters to Doctors, leave a comment below by 5 pm Sunday, December 15th stating that you’d like to be entered and you’re in! The winner will be announced shortly thereafter.
And one more thing, if you have a BRCA question of any kind to ask Teri, go right ahead and ask it via a comment below. Teri will be happy to answer it!
About Teri Smieja
Teri is a mother, wife and blogger-turned-patient-
About Dr. Jonathan D. Herman, M.D.
Dr. Herman is an obstetrics/gynecologist who tests for and treats women who are BRCA-positive. He works tirelessly to inform, educate, treat and refer patients for the best possible outcomes.