“I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next.
Delicious Ambiguity.”
The above quote is my “hope quote”, one I’ve clung to for more than a decade. It resonated big in me when I realized the plans for my life were not going to go…well…as planned.
The ultimate dream of going to college, having my dream job (just one), meeting my true love, having a family, and living happily ever after…slipped further and further away from being my reality with every job, every move, every broken heart, and every year I turned older.
I grieved the loss of this dream for quite awhile until I discovered my “hope quote.”
“Life is about not knowing…”
I began to pout a little less and start looking for the fun, the positive, & the purpose of the detoured plan at hand.
My recent detour was thinking I was going to be going under the knife to have the chest of my dreams, only to find out I’d be looking at the opposite of that…a prophylactic double masectomy.
Breast cancer…the killer that took my mother and my grandmother was now coming after me.
I received a warning and jumped into gear. I underwent something I swear I’d never do…genetic testing.
And now It’s been 24 hours since I received my genetic test results. Results I’ve dreaded and ran from receiving…I am BRCA1 positive!
For me, with my family history and this positive gene marker, my risk of getting breast cancer is now above the legal limit. The new kicker that I wasn’t prepared for…is that this gene also puts me at a very high risk for ovarian cancer…literally dubbed “the silent killer.”
I’ve successfully avoided genetic testing for almost 20 years. I have a faint memory of my mom, as she was dying of breast cancer, not wanting my sisters and I to get the genetic test done at that time. I was adamant about following her wishes. I made up so many excuses: “insurance will discriminate against me.” “I don’t have the money.” “Breast cancer died with my mom-I’m gonna be fine.” But I think the real reason why she didn’t want us to get tested is the same reason, I didn’t want to get tested…
Because I didn’t want to have my life being dictated by a test result. I think of all the things I wouldn’t have done and all the life experiences I would have been robbed of if I had known then what I know now.
I would have probably stayed with undeserving men in order to get married and have kids so that I could get a masectomy and hysterectomy before cancer could take me out.
I would have stayed in jobs I had outgrown or was miserable in…just to have health insurance and benefits.
I would have never started my own business.
I would have probably never left Kansas so that I could be close to home when the “cancer finally got me!”
For the past 24 hours my brain has been flooded with so much information and so many huge life altering decisions. I feel like I’m living out a real life scenario of a talking point from a philosophy college text book.
I am not 100% sold on having kids…but that option being taken from me doesn’t sit well. And if I did want to, I’d need to throw down a bunch of cash, line up a uterus, and be prepared to play Sophie’s choice with embryos in a Petri dish, to make sure the one I picked didn’t have this same gene.
Or I could risk it and opt for the natural way and know there’s a 50/50 chance I would pass this gene down to my child.
Or I could sacrifice the chance of being a biological mom and make sure this gene dies when I do.
I’ve thought to myself, as science gets better and people get wiser, are we going to have more people choosing not to have biological children? Choose to procreate with people only after getting the all clear from genetic counselors to make sure their offspring are genetic disease free? I spoke to a friend of mine who has BRCA1 and chose to have children. “Yes, as science gets better and better- who’s to say they won’t have a cure for this? Or even better options for my children to deal with this?!”
Another friend of mine said “think about all the hereditary diseases parents could pass down to their kids, and it’s not stopped them.”
Their opinions put me at ease. I still need to see several specialists about that and hopefully their expert opinions will also help put me at ease.
The other thing I’ve thought about is how archaic and quite frankly barbaric that the only remedy for surviving BRCA1 is stripping women of their femininity (breasts and ovaries) (or that’s how it feels to me).
However, I’ve seen other genetic diseases destroy humans and families and I think if they were given the option to remove that thing from their body..they would in a heartbeat.
But the question that weighs on my heart the most is “Will genetic testing remove delicious ambiguity from our lives?”
Ironically enough, the author of my hope quote, Gilda Radner, died from Ovarian Cancer in 1989 at the age of 42.
I wonder if she’d undergo genetic testing and prophylactic procedures to save her life, if given the chance.
elysesexpressions 