Who am I? I am a 41 year old woman, I have had two children (my body reflects that for sure), I am wife, a mother, a niece, a friend, and I am BRCA1 positive.
Did you catch that? In my description of who I am I listed that I am “BRCA1 positive”. It’s not because I believe those four letters and a number define who I am, but it does play a major role in my life. It is my genetic make up. I am BRCA1 and my life has been affected by those four letters and a number. This gene, this mutated gene, has been passed on to me by the women in my family, and because of that my life has been greatly impacted.
The Family Curse….
I have rejoiced as I’ve watched some pretty amazing women celebrate the victory of cancer in remission, and have watched them struggle through the long road marked by the effects of chemo.
It began to mold me at a very young age, as I sat at the corner of my grandmothers bed, ashamed of the fear I felt as I gazed upon something I didn’t yet understand. It affected me as a teenager standing at the foot of the bed as my aunt took her last breath. It rings in my ear just like the call I received from my favorite aunt telling me they found cancer in her breast and she was going to begin treatment. It has affected me and has contributed to the woman I have grown to be.
In December of 2012 I listened to the voice of the most wonderful woman as she made the choice to surrender to the disease she fought so hard against for so many years. At the age of 62, I sat across the table from this brave warrior as she herself organized her funereal. As the white flag flew in our home, we invited hospice in to help us care for my mom in her last days. I took care of this beauitful soul as she once cared for me in my infancy and in May of 2013, cancer won.
I can still remember the look in her eyes the very last time I saw her, that memory is etched in my mind. Her beautiful eyes pleading with me….it’s that look that fuels the courage for me to push forward. Determined and full of hope, that maybe my story will be different.
About 10 years ago, I was tested to see if I carried the BRCA gene that predisposed me to both breast and ovarian cancer. My mom and aunt had both tested positive, I did too.
As a new mom to my then 1 year old son, and 3 year old daughter, I was not ready to do much more then the screenings my doctors suggested. Screenings that consisted of yearly mammograms, breast MRI’s, pelvic ultrasounds, and bloodwork.
Fast forward to the year 2013, the year mom died. I felt more urgent. I needed to do something. Years spent meeting with doctors, doctors affiliated with various medical centers all throughout Southern California , I felt I was well aware of the advised course of action; take all the girl parts out, girl parts bad.
- Something you must know about me is I am a thorough planner & researcher. I research things to a fault sometimes, just ask my husband….whether it’s a pair of sneakers I plan to buy, or a family trip to Vegas, I’ll research the tar out of it! With that said, before I will lay on any operating table, I am going to look deeply into my options. I like to think that it is one of the luxuries of being proactive with your BRCA result, you can take the time you need to do your research. And research I did, and what I discovered fascinated me.
My biggest concern at that time was having a complete oophorectomy, (removing both ovaries), and being thrown into FULL ON MENOPAUSE (poor me and poor my family). What the hours of research had revealed was that in countries outside of the US, women just like myself, were being proactive in their fight against cancer but leaving their ovaries in tack. So what did I do? I read and researched some more and ended up with this request to my doctor….
“Take everything out, my uterus, my cervix, and my fallopian tubes but leave the ovaries.”
What!?! Yes, let’s go totally against the grain! Maybe I’ll pay for it later but I’m keeping my fingers crossed on this because what doctors in countries like Canada and Europe were suggesting to young women with the BRCA gene was to remove the fallopian tubes & leave the ovaries (Take those bad girls out later). Why? Because, in a nutshell, what these doctors were finding in removing healthy ovaries in an otherwise healthy BRCA woman like myself, was that the fallopian tubes removed during a hysterectomy were actually showing signs of cancer. The ovaries were just fine in most of these women. So doctors were sparing women instant menopause and suggesting removal of fallopian tubes. Research it, it’s out there!
My hunt to find a doctor that had read the same articles I had was on and lukily it didn’t take to much time. I found a creditable doctor who knew exactly what I was talking about and was willing to do the surgery. On December 29th of 2013 I went against all the advice I had received over the past 10 years with the hope that medicine is advancing, but more importantly I made this decision because for me, at age 38, it was a baby step in the right direction, it’s what I was ready for. I had all my inners removed and left the ovaries for later. My plan, if God is willing, is go in after those bad girls a little closer to natural menopause.
The road continues…
So now that you know what’s REALLY going on inside this gal, I invite you to walk with me, subscribe to my blog as I update you in the next part of my journey. I may be a bit of a “brat” because I want things my way, and this year promises to be a big bratty adventure with a pending double mastectomy scheduled for June 21st. If it goes my way, this won’t be your “traditional” mastectomy… I have done my research and I’ll share it with you. After all I’m doing this for you, My BRCA sister, and I’m doing this for me. I’m exploring other options for my kids, and as a daughter remembering the plea in her mothers eyes, I’ll find another road to travel and prayerfully my story will end a little differently.