THIS IS BRCA POSITIVE!

August 2, 2021

It’s been 4 months since my Double Mastectomy.  I am happy to report that I continue to heal and am doing quite well.  Thankfully my recovery has gone as smoothly as it has, because approximately 2 weeks into it, we found out my husband has a rare bone disease called Kienbock’s Disease.  Never heard of it?  Us either!  In a nutshell, the blood supply to the lunate bone in his wrist became ineffective and over time, the lunate bone became necrotic and started to collapse.  I have no doubt he was in a decent amount of pain and suffering long before he went to the doctor, but he gritted his teeth and held out until I was on a positive track with my own surgeries behind us.  He is now 17 days into his own healing and other than driving me crazy because he insists on doing things that put him in potential danger, he is doing well. 

As I have progressed through these past months, I kept thinking on a blog post I wanted to create and  decided today is the day.  My intention is to capture what BRCA positive looks like in today’s world.  I have had many conversations with individuals over the past year and will jump on the prevention soapbox in front of anyone who will listen.  I find comfort in believing awareness of a BRCA positive status will continue to grow and with it many lives will be extended.  This means men and women can have more days to spend with their loved ones and countless happy memories can happen in place of a BRCA inspired cancer stealing joy from those of us who carry the mutations. 

In addition to words and songs, today’s post will take you on a journey through photos. Four days prior to my double mastectomy I did a photo session.  I was inspired by some “racy” photo shoots some ladies had done before their own surgeries.  As I was wrapping my head around actually doing the shoot, I realized…in no way shape or form had the previous 16 months been about only me.  My husband and son (who is also BRCA positive) traveled every step with me.  Therefore, it was important for me to have the photographer capture the entire essence of my journey to that point.  I cannot thank Sarah from Sarah Brandt Photography enough.  She found a way to transpose emotions into print and made the experience comfortable and enjoyable.

 ****WARNING……….As this post continues, there will be some clean, but interesting photos.  Out of my comfort zone for sure, but totally worth stepping outside of the box!********

Okay, so here we go……………………from the viewpoint of an average woman living with her BRCA1 positive status.

BRCA1 Positive IS

Scary – From the moment one sees or hears the words BRCA positive, a huge element by the name of fear sneaks in.  Even though I have successfully made it through two major preventative surgeries, the fear of other cancers lingers in the silent corners of my mind. 

Overwhelming – In the blink of an eye, statistics, information, appointments etc. take over and some days you feel like breathing is something you need to remind yourself to do.

Forever – I will never know a life like the one I had prior to January 2020.  I will live a lifetime sharing my status with physicians and healthcare providers.  Since I have already had a preventative hysterectomy and bi-lateral salpingo-oopherectomy and double mastectomy, it’s time to forge ahead and create relationships with a dermatologist and gastroenterologist.  I will continue to stay proactive with checks and future scans.  IF this mutation gets cheeky with me, I want to catch it early in whatever part of my body it thinks it’s going to claim!

A legitimate threat – Some people don’t believe in a lot of legit things, so this shouldn’t really surprise me, yet it does.   However, the more research is done, the more scientists and health professionals come to realize the validity of prevention when it comes to patients carrying a BRCA mutation.  It saddens me that many lives have been lost to BRCA related cancers, but I find comfort knowing many will be saved from this threat now and in the years to come. 

Consuming – For months I read, researched, and talked about what it was, what it meant and what I planned to do.  Thankfully there are lots of trusted sites and others who have shared their stories.  ~ If you are new to this journey, PLEASE be sure you are getting your information from trusted and reliable sources!

Hereditary – Getting my son tested was very important to our family.  We know he is in fact positiitive.  His risk for several cancer is increased and any children he has in the future will have a 50/50 chance of inheriting the mutation.   

Educational – If I had not found out about my own status, we may have never found out my son carried it.  Some think this mutation only effects women and this is far from the truth.  Men who carry the mutation are also at a higher risk (albeit not as high as women) for getting breast cancer AND the mutation increases the likelihood of developing other cancers for both males and females (melanoma, colon, pancreatic, prostate and colon.) Plus, as mentioned above, men can pass it along to their children.

Thought Provoking – Lots to consider and ponder with a mutation like this.  Ignore it? Increase surveillance? Preventative measures? So much to think about.  In the end, there is no right or wrong decision.  Every individual has to make the decision that is best for them and their loved ones. 

Inspiring – From the ladies who shared their stories to the team of health professionals who are familiar with these particular genetic mutations.  Each one taught me something and many inspired me to believe in my decisions and not second guess them.

Empowering – For me, my BRCA status empoered me to do things I may have never found the nerve to do.  I have never been comfortable in my own skin (too fat, too hippy, butt is too big…the list goes on and on and on.)  BUT…….when faced with the thought of losing myself along with my boobs, I somehow found the words to blog, the desire to say “F-it” and enjoyed activities such as “boob art”  and an often desired, but always too scared to persue “boudair photo session”.   

Now for what

BRCA Positive is NOT

A death sentence! –  If you are new to this journey, please read that one again!!!  In addition to that…

A definitive future cancer diagnosis – Again, having this mutation does not mean you are going to get cancer for sure!  It simply means your chances are much higher than the average human to get one (or more) of a variety of cancers at some point in your lifetime.

A joke – Even though it is not a cancer or death sentence, it is worthy of exploration and understanding.  If you have or know someone who has a BRCA mutation and you don’t understand something about it, ASK!!!   There are tons of websites, Facebook groups etc. that have plenty of information and people who are happy to fill you in on what it means and the effects in can have on yourself or a loved one. 

An excuse – I have said it before, but will say it again……..having a BRCA mutation is NOT an excuse to get a “Free Boob Job” or “Free Brith Control” – Nothing about this experience is free and it costs way more than any monetary fee.  No value can ever be attributed to the tears shed, the hours of sleep lost, the joy that was displaced by worry or for some, the inability to carry a child. 

A Happiness thief – I was often worried I would not feel like myself after my surgeries.  Those thoughts alone caused a lot of stress, anxiety and sadness.  However, I feel more like myself a little more with each passing week.  I have thoroughly enjoyed a lot of things this summer I was certain I was going to miss out on.  And although a hug feels different than before (no sensation in the front of my chest), I have realized, the squeeze is the best part of a hug anyway!  😉

Anything to be ashamed of – Health things are funny.  For example,  I will never understand why diabetes and heart disease are okay to talk about, but mental illness is not OR childbirth and/or birth control options are kosher conversations to have, but couples often go through the pain of a miscarriage in silence.  For both men and women….having a BRCA mutation is nothing to be ashamed of nor does it warrant silence.  On the contrary, the more we can educate and spread awareness across the globe about what it is and what can be done about it, the more lives we can treat and possibly save!  I don’t find that in any way, shape or form shameful!

Thank you for tuning in to today’s post.  Whether you have been following along from the get go, have tuned in for a post or two or are finding your way here for the very first time….I appreciate your time.  I haven’t thrown out a reminder in awhile, but I’m going to now……

• If you haven’t gotten to the doctor for your yearly Pap-Smear or Mammogram….what are you waiting for? 
  • Ovarian Cancer can be hard to detect and sometimes has no signs early on, but if you have any of these symptoms, PLEASE mention them to your Gynecologist when you are there.  If they don’t listen…find someone who will.
    • Loss of appetite
    • Weight Loss
    • Frequent bloating
    • Change in bowel habits
    • Pain in abdomen or pelvis
    • Frequent nausea
    • Feeling “full”

• In addition to a yearly mammogram, it’s a good idea to get in the habit of monthly boob checks!
  • Listen ladies, we fuss over our hair and nails.  We have daily routines for our faces and moisturize our skin after we shower.  We clean under our nails and dig fuzz from our belly buttons, BUT when it comes to our breasts, we often think “a mammogram once a year is sufficient.”  Guess what…..that is not always the case!!!!
    • Start now!  Feels those girls and feel them often so you become familiar with what is normal for you.
    • If you don’t want to feel ‘em…..get your partner or significant other to do it.
    • Men….don’t stay silent on this…..talk to the women in your life. 
      • Help your wife, girlfriend or significant other remember to do this.
      • Have the uncomfortable conversations with your grandmothers, mothers, sisters , aunts and friends. 
    • Unhealthy or Time-Bomb Boobs can be removed or replaced, but WOMEN’S LIVES can not. 

 I read a quote once that said…. NO Woman should ever die from a BRCA related breast or ovarian cancer, as they are completely preventable!                                                                                                             I hope that hits someone reading this as powerfuflly as it hit me. 

I am including two songs in today’s post.  Both artists have been represented in previous posts, but they are 2 of my all time favorites and deserve several mentions. 

#1 ~ Heal Me by: Melissa Etheridge. 

I have listened to this song for a variety of reasons for years, but in the past few months it has been more impactful than ever before.

# 2 ~ Hell of a View by: Eric Church

“We ain’t for everybody
Toes hanging off a ledge
Like we got nothin’, we got nothin’ to lose
Ain’t always heaven, baby
This livin’ on the edge
You holdin’ me holdin’ you
It’s a hell of a view”

The last 3 years have pushed us to the brink, yet we have tackled every obstacle holdin’ on to noe another.  We certainly ain’t for everybody, but we are for each other. 

Here’s to many more years looking at hell of a views! 

Until next time, my friends…..Be kind to each other and take time to stop, breathe in and enjoy your very own “Hell of a View.”

Peace,

Gina Marie