“My Perspective” on being BRCA +

It is downright scary how worlds collide in the blogosphere.  Just days ago, I “met” Mollie West when I bought her BlogHer’13 ticket.  While messaging back and forth over the details, she mentioned that she looked at my blog and called me “amazing” – and then I knew she was cool!  Anyway, Mollie writes several blogs including one called Tata to the Tatas.  Clever name, right?  There she blogs about being BRCA+ and her journey through all of her prophylactic surgeries.  Ring a bell?  Yes, the same surgery Angelina Jolie just wrote about in the New York Times.  While I’ve read a lot of criticism over the last 24 hours about Jolie’s decision to remove her breasts, I applaud her being transparent and using her celebrity to bring awareness to the disease.  But, I also think it’s important for people to know that there are everyday women facing this same decision and that it’s not an easy one to make nor is the surgery a piece of cake.  Help me welcome Mollie as she shares a powerful piece called “My Perspective” on being BRCA positive.

i-want-to-live-not-just-survive

courtesy of Tata to the Tatas

Now that I’ve met with my doctors I feel like there is nothing left to do but wait…wait and read every single blog ever written by women that have undergone prophylactic bilateral mastectomies.  The views inside these women’s lives have surprised me more than any information thus far.  My goal for my blog was strictly information.  After reading so many other blogs I decided that I need to give more background, more of a view from my perspective.

I can’t remember the exact day, but I can pinpoint the day that cancer started affecting my life.  I was in a graveyard with my mom sitting by her mother’s gravestone, asking her to tell me about her mom.  From what I can remember my mom mostly discussed cancer and her mother’s untimely death.  My mom only had a mother until she was 16 and she felt that the most important thing to tell me was about my grandmother’s stoic fight against this disease.

 

I celebrated the 10th anniversary of the passing of my mother this last weekend.  I guess I can consider myself lucky in comparison because I had a mother for 23 years of my life.  I’ll take that extra seven years again and again.  I realized that my recount of my mother’s life is very similar to my mom’s about her mom.  It always starts with the fact that my mom fought cancer for almost 12 years.  That’s right – my mom was in a constant battle with the disease for over half of my life.  My mom is the strongest person that I know and I want the world to hear how she survived much longer than any doctor predicted and kept a positive attitude year after year, treatment after treatment.  It saddens me, though, because I realize how cancer is the focus.  I rarely recount the time that we found out that I am allergic to penicillin because my body was covered internally and externally with hives after prescribed the medication to combat bronchitis and a sinus infection and my mom let me lay on her lap as she continued to rub me to relieve some of the itchy sensation.  Or during my senior year how I didn’t make the cheerleading squad (although I cheered since 8th grade) and how she let me cry as she held me and vowed that she would make it right.  True to her word, I cheered my senior year.  Why do I never begin telling about my mom with her being my mom, not a victim to cancer?  Or even that she wasn’t the most outgoing person, but if anyone who gave her a chance to befriend them was forever touched by her positive, loving, and gentle nature.  Why don’t I lead with her character instead of her situation?

 

One of the greatest gifts my mom passed down was being the first person in our family to get testing for the BRCA mutation.  Cancer was so prevalent with diagnoses as early as 28 years old and no survivors.  That’s right.  No one in my family has been able to celebrate their remission.  I think the entire family didn’t question that we had a mutation, but it was my mom that gave her blood to find out exactly where it was.  She did that shortly before her death.

 

The first tested was my cousin who is three months younger than me.  She is a carrier.  She received the mutation from her father.  Despite our closeness in age, we were at very different points in our lives in 2003 when she underwent testing.  She was newly married, months away from becoming a pharmacist, and ready to start a family.  I was working as a legal secretary (my first office job) with a relatively new boyfriend.  She was ready to find out so that she could plan her life and move on.  I was not.  That’s exactly what she did.  In 2006 she had a daughter followed by a son in 2007.  After a couple of bad gynecological exams she decided that the hysterectomy took precedence.  That happened the summer of 2009 and by fall she had both breasts removed with expanders placed for later implant insertion.  That happened the spring of 2010.  Her surgeries concluded later that year.

 

In 2006 I graduated with my BBA and started on my MBA.  I was still dating that boyfriend that seemed rather new in 2003 and my education was finally falling into place.  I had a pretty good steady job now (with insurance), so early 2007 I decided that it was time.  My older sister (by two years) and younger sister (by four years) had still not been tested, so I would be the first in our immediate family.  I was nervous.  I was anxious.  Honestly I kind of liked being the first because for some reason people associated that with braveness (still think that it’s an odd association, but sure, I’ll be brave).  I think that it was a lot like my cousin and my situation, though – my sisters were at a different stage in their lives.  I was wondering if this was the boy that I was going to marry and have my children with.  If he was the one that knew all of the information before any commitment and would still choose to stay with me through it all.  Neither of my sisters seemed to be contemplating this yet.

 

The testing is quite uneventful.  Take some blood.  Send it off.  Get results.  I know that a lot of information was covered.  I know that I was very emotional.  I remember Dad and me getting lunch and me chugging a dirty martini immediately upon arrival home.  I don’t remember much more than that.  I think that it’s because it was such an emotional process that I felt like I was in a dream through most of it and like a dream it fades as soon as you wake up, or in this case as soon as reality hits you and you need to be present in life.

 

I had one thing that I was counting on – at least one of my sisters had to have this, too, right?  I know it’s a 50/50 chance, but our gene seems to be incredibly aggressive.  My mother has three siblings and we know that three out of the four have the mutation and the fourth hasn’t tested yet.  Sounds like crappier than 50/50 odds, right?  Let me clear something up – I do not want either of sisters to have the mutation.  It’s not something that I would wish on anyone.  What I wanted was a partner through this journey.  I had grown up with these women.  Lived with them for the majority of my life.  I know them.  I love them.  Their understanding and support would mean the world to me.

 

I don’t remember when each of them tested, but it seemed to be forever after me and it seemed to be close together.  I can’t even remember which one tested first, but I think my older sister was first if I were to guess.  As they tested I sat and waited.  Who would be my partner?  My confident?  Who could I form this everlasting, unique bond with?  Would it be the older?  The younger?  BOTH?  I had visions of each of us recovering from surgeries completely understanding the others pain, emotions, vulnerability and caring for each other like no one else could.  As each tested negative I couldn’t help but feel a bit of desperation along with my elation.

 

I didn’t really feel too much of the “why me?” at that point.  All of that came when I tested positive.  I felt alone.  Honestly, I felt abandoned.  They couldn’t help that.  Each of them were so scared to tell me their results that I actually felt guilty.  And so alone.

 

That’s when I started searching within myself.  My real, blood, family sisters can’t be my BRCA sisters.  Now what?  It wasn’t until I talked with my cousin that I realized what I wanted.  It was because it is what she wanted.  We want the exact same thing – to put cancer behind us and never speak of it again.

 

It was at that moment that I started to plan.  I planned my life through the surgeries.  After that, I am a blank canvas.

 

I wanted to get married and have two children.  In 2007 after confirming that I carry the mutation, I pretty much ultimatum-ed that long-term boyfriend.  I told him exactly that – married and two kids and either he was in or he needed to be out as soon as possible.  We were married in 2008.  It looks like those prophylactic mastectomies would have to be put on hold for a while longer.  We tried to enjoy life as we moved on with “the plan”.  After a miscarriage, my first son was born in 2009.  Another miscarriage, but then another blessing, a son in 2011.  I nursed both of them.  Now it’s time to be proactive.

 

My body has cooperated with “the plan” so far.  My mammograms and ultrasounds have been clean.  Besides battling this baby weight, I am healthy.

 

This is what I want.  I want to undergo prophylactic bilateral mastectomies and a preventative hysterectomy.  I want my sons to reminisce about the days that I kissed boo-boos, helped them look stunning for their prom, cheered them on at sports/math league/marching band, and gave them advice long into adulthood.  I do not want them to begin their stories of my brave (hopefully!) face during cancer treatments, or my fight before my defeat.  I want it gone before they can remember.  I want to be the first generation that’s story doesn’t begin with cancer.

 

I was told to join FORCE and Bright Pink.  To walk in Relay for Life and find other women.  This is all excellent advice, if that’s your thing.  It’s not for me.  At least right now.  I am excelling in my career and raising two energetic boys.  I have a husband that I adore and our time is so limited right now (due to this career and these cute babes), why would I abandon that to look for support?  I have all the support right here.

 

I’ve noticed that a lot of women have realized true friendships and have lost friends during their journey.  I feel for these women understanding that it’s such an emotional process anyway.  Fortunately, that’s not at all what it’s about for me.  I have an amazing support group.  Although my sisters can’t be my BRCA sisters, they are still my real, blood, family sisters.  Both are always there.  My cousin is amazing.  We pop in and out of each others lives with many miles separating us and young children occupying us.  I believe that we will both always be there for each other whenever needed.  My family is so close.  Then my friends.  They mean the world to me.  Each being supportive in their own unique way.  Portraying love in every offer of assistance or reassurance that they will, indeed, be there.

 

I read this on another blog and loved it – my boobs have six months to live.  My initial surgery is scheduled for January 17, 2013.  I scheduled it today and later realized that it is six months to the date.

 

That’s my story.  I’m not a warrior against cancer.  I may be some day, though.  Right now I am trying to create an experience that not many women in my family get – to live cancer-free.

 
Read more from Mollie West at Tata to the Tatas. Her blog is powerful, transparent, and informative. As mentioned above, she also writes at Full Plate Momma and Newly Organic. You can also follow her on Twitter and Facebook.

Comments

  1. Mollie,
    Thank you so much for sharing your story. I totally identified with how you describe your mother and how she should not be defined by her fight against cancer but instead as so much more. My mom was the same and you made me pause to think about how I describe her now. Thank you for that important shift you gave me.

    Wishing you speedy healing and closure as you complete the procedures ahead of you. You will be the first generation without cancer. You are a warrior to me.
    Thank you for sharing this amazing post!
    Sara

    • Thank you so much for your kind words, Sara. It really means a lot to me. I’m sorry to hear about your mom. Cancer truly sucks and I feel so blessed that I get the chance to one up it! <3

Trackbacks

  1. […] wrote in my first blog post “I planned my life through the surgeries. After that, I am a blank canvas.” and I still […]

  2. […] Read Mollie’s perspective on carrying the BRCA1 mutation. […]

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