August 3, 2020
If ignorance is bliss and knowledge is power…which would you choose?
Up until January of this year, I was blissfully unaware that a genetic mutation lurked silently within my cells. Although, I always knew that part of me was “Jewish”, I had no idea that a known genetic mutation was popular amongst people of Ashkenazi Jewish descent. I have never set foot in a synagogue to pray and know little about my father’s lineage. My father was raised in a very Jewish family, but both his parents were deceased by the time he was 20. His choice to marry a Catholic woman ensured that he nor his children would ever be welcome in his hometown synagogue. Sadly, my father is now also deceased and all I am left with are the stories I was told, birth/death certificates to scrutinize and a few ladies to help me put the pieces of a mostly unknown and quite possibly misdiagnosed puzzle together. In the end, I am more concerned about forming and sharing my own quirky, weird and hopefully long, but healthy history with my family and with some good fortune, future generations. I sit here today knowing this day 8-3-2020 is a unique page in a bizarre mid-chapter of my life. It kind of feels like a mid-book crisis and a pivotal moment in the story of my life.
Here is the Cliff Notes version of how Chapter 46 of the Book of Gina looks up through today –
In early January 2020, my husband and I thought it would be great to purchase 23 and Me kits. I wanted to see how much gypsy actually pulsed through my veins and he was determined to show the world that while he is clearly Irish and German, somehow, somewhere deep in the ancestry line he was of Mexican descent. I kept trying to tell him that the constant tequila that courses through his system is NOT the same thing as his genetic makeup. He continued to insist that his love for spicy food and extreme affection for the agave plants golden elixir could only mean there was an actual genetic tie to the area of Jalisco, Mexico (spoiler alert: he is NOT in any way, shape or form of Mexican heritage.)
Jim and I both spit into the collection tube, sealed the box and waited for our histories to be delivered to an app on our phones. Five days before our results were due, we headed to Aruba for two weeks of fun in the sun and relaxing by the sea with friends. I was thoroughly enjoying a perfect sunny Aruban day when I heard the sound of an incoming message from 23andme. Perfect timing, I thought. I had just finished reading my book for the moment and wasn’t quite ready to walk the 5 minutes it would take to go back to my room. My beverage was still cold and my lounge chair was in a perfect sunny spot. I opened the app, signed in, read through the first part that showcases the regions from where my people have lived. 99.1% European. Better start to think about planning a European vacation was one of my first thoughts. Not as Italian as I hoped, definitely can see where some of the gypsy comes from and yep….my dad wasn’t lying. A result of 49.6% Ashkenazi Jewish proves he was truly an authentic and pretty much pure Jew.
Now it was time to look at the Health Predispositions and Carrier Status reports…….BOOM! This is where the bliss stops. The very first one BRCA1/BRCA2 – 1 Variant detected – You have a GREATLY increased risk of developing breast and ovarian cancer based on your result. Advised to find a Genetic Counselor!
Ummmmm…..excuse me? What?? Let me log out of this app and log back in. Clearly, I got someone else’s results. Nope….all mine. Now, what the F do I do with this? I take a deep breath and a long sip of my cold beverage. A tear develops, but I refuse to let it escape. I have other things on my mind, that I will dive into on another post, but in this moment…no matter what anyone else says, no matter how hard I want to rewind back to the previous 10 minutes and not open the damn app, regardless of believing that my current health status is good, I KNOW my life is about to change. I may be surrounded by my husband and friends, but I feel alone. I have friends who have battled and defeated breast cancer. I know their journeys and I am certain I will reach out to them in the future to help guide my decisions, but this is internal, and this is mine. I try not to overreact and as I do with other things, I keep it to myself for a day or so. This allows me to research a little and silently process it. It is finally time to share. Naturally, I start with my husband. It’s been a long and emotional 15 months up to this point, I don’t really want to add another emotional punch to the face, but I know that for any punch I take, he will gladly step in front of me to take 10 more. His calm approach helps me to not go too far down the path and we decide together, that once we return to normal life, we will gather the necessary information and meet whatever comes hand and hand together.
Our time on the island is cut short by the passing of my beloved Grandfather. We returned to the states, made it through a lovely memorial service for my Grandpa and relished in the fact that we got to celebrate his life together as a family. During this time, there is a stir about a virus in China. We believe it will stay in China and we won’t have to deal with it here in the states. As you know, this is not the case. And so now, we are dealing with grief, a viral pandemic AND I still have to deal with this damn mutation.
Thankfully, I was connected to a wonderful counselor and doctor. We had our first virtual meeting. It quickly becomes very clear that this is a serious situation and I have a lot to discuss, learn and figure out. A 23 and Me test result cannot be used as a diagnostic tool, as it is not approved by the powers that be. I had to have an initial visit with both the Genetic Counselor and Genetic Doctor before I could get the blood test. Insurance is involved…blah…blah…blah. I get the blood test done and it’s confirmed. There is no doubt….I am BRCA1 positive. I have another quick visit with the counselor and doctor, and it is recommended that I schedule a visit with the Hillman Cancer Center in Pittsburgh, PA. They will be the ones to help me decide what treatment path is best for me. I initially panicked over the fact that it will take another 2 months before they can see me. The fantastic doctor that I have already spoke to jumps in and advocates for me. Within days I was able to jump the line and get a breast MRI done. Thankfully, my MRI was clear. I know that I am lucky. Many ladies start this journey with a cancer diagnosis. I am starting with what I hope is a clean slate (the ovaries are harder to explore). Today will be my last day of mostly unknows, non-decisions and mostly internet-based research. My body feels heavy, like concrete firming up. I am nervous and scared. I know tomorrow I will put one foot in front of the next, I will find the courage to step through those clinic doors and I will fill my brain with as much knowledge as possible.
As I laid in bed this morning, my brain spinning, I thought of this strange analogy. I am not a car person, yet…here it goes…..
In life, there are some cars that never go very far. They are blissfully happy to putter down their town streets and have no desire to see the neighboring city, let alone the world.
Then there are cars that with a little bit of gas realize there is more to life than their little neighborhood has to offer. They hit the pavement and start to explore. They relish in breaking past the city limits and enjoy a different view, yet never stray too far from home.
Lastly, there are cars that have an endless tank of gas and fly down the interstate, daring to go places no one thought they could go. They feel the power of the engine and break all barriers. They find a way to live, breathe and see the world.
Today, I feel like a car in neutral. There was a time I was blissfully unaware of what lied within. I have had a little gas added into my tank through research and a few chats with professionals. Tomorrow, I am pulling into the station to start to fill my tank with knowledge and power.
At times, I think bliss would have been wonderful, but know that state would not last forever. I am choosing power. I am still not 100% sure of what my choices are going to be or what choices I am going to make, but I do know that I am ready to buckle up and see where this power filled road will lead.
And so, at this point, I would like to know…If you had the choice between bliss and power, which would you choose?
2 thoughts on “Bliss or Power?”
Great great blog. If you’d asked me which was better before my mastectomy, I’d say bliss. But now, after my mastectomy, I’d say knowledge. I’ve been in these exact shoes. And I’m so grateful to know- probably most for my children. They deserve this knowledge. But….. it was still
So hard finding out.
You are a super powerful person, and I believe in you.