What new challenges have you taken on since being diagnosed with breast cancer? What have you had to deal with after losing your breasts to cancer, or finding out that you are a BRCA gene carrier? I was inspired to write this blog based on an article seen on social media from Living Beyond Breast Cancer. I include my BRCA friends in this post because I advocate for all choices of breast reconstruction and we have all had the perspective of experiencing some difficult decisions regarding our health. Events in life, good or bad, change us. They catapult us into decisions that we likely would not have come to based on the event. Being diagnosed with cancer for the second time in 2014, facing a mastectomy and then delayed DIEP flap reconstruction later that year, reset my compass.
A Side Trip on my Journey
Many have asked me why I focus on the word “journey” in my writing. Life is a journey, to me, with or without cancer and reconstruction. Cancer and breast reconstruction have been just a side trip on that journey. The seas have been rough at times and difficult to navigate but it has also given me so much more than I could have ever imagined. This is how it changed me and how I am “truly living”.
My mastectomy was in May of 2014 after my second occurrence of breast cancer. I had my consultation with my plastic surgeon in October to determine if I was a good candidate for delayed DIEP flap surgery to reconstruct my breasts using my own tissue. I was indeed a candidate even though the optimal procedure was to have immediate reconstruction. I was so pleased with that group that I chose Dr. Minas Chrysopoulo at PRMA to do my DIEP flap surgery. Soon after that I was asked by the patient liaison, Courtney, to join a volunteer advocacy group of ladies who had been through reconstruction due to breast cancer and to talk to other women about what the experience was like. After my phase one surgery in December of 2014 I began my outreach and advocacy. I received more names, more emails and more requests to speak to women wanting to know what it was like to go through DIEP flap surgery and how to find the most qualified surgeon.
Breast Reconstruction Education, Outreach, Advocacy
I have been an educator all my life and this work just felt so natural to me; education, outreach, advocacy and helping others during difficult decision making processes, all responsibilities I had and enjoyed during my teaching career. Two key points kept nagging at me in my mind. First of all, unlike my own experience, I knew not every woman was being told about their breast reconstruction options at the time they were diagnosed and facing a mastectomy. Secondly, I started brain-storming about how I could reach a wider audience of individuals faced with making the same decision that I had to about their own health.
Besides educating, I love putting pen to paper or in this case, fingers to keyboard. I have always loved the writing process as a way of communication. The ability to make my story personal, heartfelt, and at the same time evidence-based to inform others is now the result of my new challenge after breast cancer. I am a writer, blogger, educator and advocate after being reconstructed due to a second diagnosis of breast cancer. I have regained and re-invented my purposeful life.
And so, on March 17, 2015 I launched DiepCJourney.com. Along with my friend and artist, Meagan Harrington Diaz, we set a goal to open my blog on that day because we both shared a strong Irish heritage. We spent many days in our favorite coffee shop pouring over ideas for the backdrop picture. There were times when I told Meagan, “Hmmm, maybe too much cleavage.” She would smile her sweet, gentle but confident smile and say, “Terri, you have been reconstructed. This is your story. Your picture needs to reflect that message.” I couldn’t be happier with her work, her vision.
I had to start hammering out content. I felt like the “crazed writer” who would awake in the middle of the night with countless ideas, experiences, facts, fears and tears to share. I couldn’t keep my fingers off of the keys on my computer. I loved this and I knew it was my unrealized passion. I was finally writing, although is was about something I never dreamed I would be writing about; surviving breast cancer twice and having someone flip my body upside down and inside out to reconstruct new breasts that I lost to a double mastectomy. Once I started I couldn’t stop. I absolutely loved the fact that I could write a post and get it out to more and more women facing reconstruction. I was educating and advocating on a larger scale.
I told Meagan at the time that I had no idea where this blog was going to take me. What it has done for me as a cancer survivor and breast reconstruction patient is immeasurable. I engaged in Social Media on Twitter and Face book to self-promote my work to a targeted audience who would be interested or could benefit from my story.
A One-Woman Show Flying by the Seat of my Pants!
The self-promoting was uncomfortable for me at first; in fact it was very uncomfortable. This was nothing I had ever done before and I was “flying by the seat of my pants”! I was getting more comments and replies from my blog/website, more phone calls, shared stories, learning about Word Press and all that comes with it. I’d call both of my sons asking them how to up my SEO’s (Search Engine Optimization) so that I could get more readers. I didn’t even know what SEO stood for when I started the blog. I knew nothing about my dashboard, embedding pictures and URLs. I had some embarrassing moments and would get messages from followers telling me that pictures would come out upside down or my URL wouldn’t show up at all on my tweet or posts. Oh the humiliation of it all! It goes on and on and often continues today as I learn this process. I am a one-woman show but five months out from my launch date, I feel unstoppable in my quest to advocate and educate.
Benefits of the Challenge
I soon realized the importance of it and what benefits it was providing for me. I have connected with some amazing plastic surgeons, oncologists, radiologists, health coaches and survivors throughout the United States and across the world. As my plastic surgeon once labeled us, “we are the trailblazers, the outliers” who are interested in evidence-based medicine (#EBM) and shared decision making (#SDM). We are trying whatever means we can through Social Media, through advocacy, education and writing to get the word out about finding healing, purpose and meaning after a breast cancer diagnosis or BRCA gene mutation.
So from the two women who started Life it Up 365 Dana Stewart and Colleen Bokor featured in this story from The DNA Chicago, I am doing something I would never have done had I not been diagnosed with breast cancer and subsequently made the decision to have breast reconstruction. I have set other goals, too, as a result of this challenge and work to fulfill them as well. It’s been an amazing journey for me!
I plan to stay the course!