BRCA BRCA ONE NINE

11-03-2021

Since the very first time my husband and I talked to our son about my BRCA1 status and the fact that, as my son, he had a 50/50 chance of inheriting the mutation, he often raises his right hand as if holding a CB radio and mumbles (like a seasoned truck driver) the phrase “this is BRCA BRCA ONE NINE.”  I have been waiting for the appropriate time to add the quip to my blog and this feels like the right moment.

The past six weeks have been filled with a variety of adventures. Jim and I have traveled, enjoyed 3 Eric Church concerts, visited old friends, made new friends, ate some amazing food, spent a few evenings with our tribe, took care of our grand dog while his human was away for work, spent a spooktacular Halloween hanging out with my family and Trick or Treated with my nieces and nephew. Through the running around, exploring, and balancing all the things, we have tried to take the time to remind each other to be cognizant of the blessings that surround us.

In addition to the craziness of the past month and a half, I have experienced a few really exciting things I wanted to share with you all.

1. Since I have started blogging, I have tried to make it a point to reach out to anyone who will listen. I am thrilled to say – some people have picked up what I have been throwing down.  ~ Several months ago, I sent my blog link to a story section on the 23andme website. Shortly after, I was contacted by the Story Producer from 23andme.  She asked if I would be interested in a virtual meeting. Of course I said Y.E.S.!   She was not entirely sure where I could fit, but assured me, she would keep my story in mind for the future. 

After several months, she reached out again and asked if I would be interested in sharing my story for a Virtual Media Tour sometime in October. I had no idea what a Virtual Media Tour was, but if it meant I could help in some small way to raise awareness about how I found out about my own BRCA journey and what that means for women (and men), especially as it relates to Breast and Ovarian Cancer, I was all in.

In my mind, it was going to be one interview that would be filmed, edited, and sent out to a few media outlets across the country. Although the thought alone made my stomach ache and sent my anxiety into a slight spiral, I believed I was up to the challenge. Then the details started to roll in. In a nutshell, I would be doing 28……. yep, you read that right….28 interviews in the span of 6 hours with reporters from across the country. Thankfully, a wonderful and much smarter than myself scientist from 23andme would also be part of the interviews and we would each be asked 2 questions. She was to handle the scientific and specific details regarding their direct-to-consumer genetic test, and I would be the real-life customer sharing my personal story.  The nerves started to settle and once again I was certain I could do it. And then, these two tiny details came to light. 

• Although I would be able to see my partner in crime for the day on the screen, we would not see the wizards behind the curtains running the logistics and making it all happen AND
• Each interview would last anywhere from 2-8 minutes.

WAIT…….W.H.A.T.? You want me to talk to someone that I will not even see, and I have literally seconds to answer questions.  Clearly these people had never met me. I can barely say my name in 30 seconds, let alone squeeze an entire story into that time frame.

The team at 23andme promised they would walk us through the process and set up a Zoom meeting for the evening before the actual interviews.

I want to be sure to set the stage here for the initial Zoom call. ~ Jim and I were on day 6 of our 9 day vacation in Colorado. The day of the call, we were checking into our 5^th and final hotel room of our trip, had little time to set up the laptop, along with the brand new and never used microphone and ring light. I had received the questions earlier in the day, but between meeting our sons best friend and his family for lunch, traveling hours to get to Denver and checking in, I really did not have much time to process them, let alone formulate 30-45 second answers.  But the time approached, and I jumped on the call. Thankfully the equipment worked, the powers that be running the call were kind, the scientist was not intimidating, well she is brilliant, so that was intimidating, but her demeanor was kind and encouraging.  All started out fine, until they asked me the first question. Well, the question was fine, but my answer was a tongue-tied mess of mangled and mutilated words. I barely made sense to myself, so I can only imagine what they were thinking. With an abundance of patience and encouragement, we tried several more times to nail down what approach to take for each answer. We completed the call with my promise to formulate a written response to my two questions and meet for another call at 4:50 am to do a run through before the real interviews began at 5:00am Colorado time.

I hit the button to leave the Zoom call, looked discouragingly at my husband, put on my shoes, walked out the door and headed to the only room in the hotel that could possibly bring me an ounce of comfort…the bar!  I did not have time to cry in my wine because we had plans to meet a friend of mine from high school, whom I have not seen in almost thirty years.  He and his wife were a welcome reprieve from the nightmare call. Unfortunately, the time came for them to depart, leaving me no choice but to go back to our room, put the only writing utensil I brought to the paper and try to find the words I seemed to have lost.

First try…. failure! Second try…. not even close. My husband, God love him, tried to interject, and assist by offering suggestions and bulleting important points. He must have sensed a distinct disturbance in the force, because he climbed into bed and tried his best to become one with the mattress. However, he continued to silently take in the show as one wrinkled paper thrown to the floor became twenty-five and the sounds of frustration grew louder with every failed attempt. I eventually asked him to remove the invisible division shield and listen to what I thought would be my replies. He listened, shook his head, and said it sounded good enough. I brushed my teeth, crawled into bed, allowed my inner 3-year-old self to throw a minor tantrum, uttered the words “I don’t want to do this anymore”, followed the fit with a silent mental rain dance with the hope it would help sleep find its way to me, and turned off the light. The moment my head hit the pillow the annoying and unsupportive voices in my head began their ridiculous chatter and minutes later, with no light and no glasses to see, I began rewriting my answers on my phone in an email to myself.   It took approximately an hour to reformulate my approach and I was finally able to quiet my mind enough to snag a nap.  Three hours later, the fun picked up right where it had left off from the night before. I had mapped out about 45 minutes to shower, do my hair and make-up and hit the office chair for my TV debut. As I was hitting my heavily producted purple curls with a hair dryer, I realized, despite the fact that there was a shit ton of product, in an environment with ZERO humidity, my normally wild and out of control curly hair had patches…and I mean BIG patches of completely straight locks!!!  Someone up above sure has a sense of humor! Thankfully, I came equipped with a curling iron and was not afraid to use it. I made quick timing with the iron, slapped on my make-up, secured my inspirational stone necklace for support, and made it to the computer with two minutes to spare! I quickly read my NEW answers to Jim and joined the 6 hours ZOOM call!

The first interview was ehhhh. Definitely needed to iron out a few wrinkles.  By interview four, Ruth and I were in a groove. Jim was a somewhat silent observer, adding his wit and wisdom only in the moments between unseen interviewers.  He only had to tell me ONCE to wait before I turned my eyes from the camera until the guy who was living in the abyss announced we had actually finished the interview and would not be seen on a magical screen somewhere in the United States.  In the span of those 6 hours, we had completed 19 televisable interviews, 9 radio interviews and one recorded interview specifically for 23andme.  Oddly enough the hardest one for me ended up being the one for 23andme. Somehow knowing it was being recorded FOR THEM threw me off my game and I hope I did not end up being a disappointing customer spokesperson. Before signing off the Zoom call, the two invisible team members made a visual appearance, Jim popped an individual bottle of Prosecco for me, and I lifted my glass in gratitude to those who turned my dream of sharing my story with others into a reality. Within minutes of completing the call, Jim and I were out the door and, on our way, to grab a quick lunch, then wait in a 6+ hour line to get into our 3^rd Eric Church concert of the Gather Again Tour. Thank goodness for a good media experience, caffeine, Jack Daniels, friendships, and live music. The combination of it all made the first 22-hour day I have experienced in an exceptionally long time one for the memory books. 

Sorry…. I know…. I got very distracted AND wordy!!  Again…imagine me trying to answer really hard and important questions in less than a minute!!!  Almost impossible!!!  Okay, after some pictures, I’ll go back to the exciting opportunities.

2.) Even before the 23andme interviews, the amazing organization Bright Pink asked me to tape a video of my story to be used for the Paul Mitchell the School’s October FUNraising campaign. Again, this was something else I had never done before, but being able to combine my love for the Paul Mitchell Schools and my appreciation for Bright Pink was a dream opportunity. I cannot wait to hear how well the schools did with their FUNraising and hope to be invited back someday to share my story and help raise awareness in the future.

3.) I have been asked to do a more elaborate interview with another media source but cannot give out the details. You will have to keep tuning into find out more.

4.) My local newspaper (The Derrick) spotlighted my story with an article this week.  It feels quite surreal getting to share my story. I am hopeful others will consider talking to their doctors and make the decision to check out their own genetics.  Even if an individual does not take a radical path like I did, awareness can lead to early detection.  And, early detection can lead to early treatment, which can save lives! 

5.) This one is not BRCA related, but it is BIG for me, so I wanted to share. After a fair share of setbacks, surgeries, recoveries and all the fun things Covid has brought to the world…. the first copies of the second book in the Tallulah’s Diner series entitled Hair Alazoozle got delivered to my door yesterday!!!!  IF you are reading this blog and would like more information on how to purchase either book or the activity book that accompanies book one, please reach out for details.

So there y’all have the latest on what has been happening in my world. I know I say it at the end of every post, but I sincerely mean it.  THANK YOU for taking the time to read what I have to write.  I am beyond humbled that my words are resonating with readers. IF my journey can help ONE lady, man, or family with their own BRCA story, then putting myself out here will be worthwhile!!!

I couldn’t end today’s post without a couple of songs. So, here is number one

You can hold my hand
When you need to let go
I can be your mountain
When you’re feeling valley-low
I can be your streetlight
Showing you the way home
You can hold my hand
When you need to let goI want a house with a crowded table
And a place by the fire for everyone
Let us take on the world while we’re young and able
And bring us back together when the day is doneIf we want a garden
We’re gonna have to sow the seed
Plant a little happiness
Let the roots run deep
If it’s love that we give
Then it’s love that we reap
If we want a garden
We’re gonna have to sow the seedYeah I want a house with a crowded table
And a place by the fire for everyone
Let us take on the world while we’re young and able
And bring us back together when the day is doneThe door is always open
Your picture’s on my wall
Everyone’s a little broken
And everyone belongs
Yeah, everyone belongsI want a house with a crowded table
And a place by the fire for everyone
Let us take on the world while we’re young and able
And bring us back together when the day is done
And bring us back together when the day is done

How awesome is that video!!!

Okay, okay….I really am ending this post…..Many heartfelt and warm wishes sent out to you all for a beautiful November. May you find happiness in the simple pleasures life brings to your table this Thanksgiving.

Until next time, this is call sign BRCA BRCA One Nine signing off!

Peace,

Gina