Sunday, June 8, 2014

eins, zwei, drei, vier, fünf, sechs, sieben, acht, neun, aus

10 days to go until surgery!  I'm both excited and nervous which I suppose is to be expected.

Will update as soon after surgery as I can!

Thursday, April 17, 2014

hier kommt die Sonne

I figured one of my favourite songs by my favourite band would be suitable for this post. 

Eins, zwei,drei, vier, fünf, sechs, sieben, acht, neun, aus
(One, two, three, four, five, six, seven, eight, nine, out)

And so the countdown begins...

I received confirmation of my surgery date this afternoon; I'm set for June 18th, baring any emergency surgeries.  As soon as I had a firm date, this song popped into my comes the sun...finally!

"Legt sich schmerzend auf die Brust"
(it lays painful on the chest)

so aptly describes the pain and discomfort I've been in for the past four years. 

"hier kommt die Sonne"
(here comes the sun)

The proverbial light at the end of the tunnel.  I just know I'm going to feel 200% better after this surgery.

It'll be a one or two night hospital stay; he told me it would be up to me depending on how I feel, and likely six weeks off work. I'll update more when I have more details; my information package was being mailed to me today. 

Enjoy the long Easter weekend everyone!  May you all be surrounded by family, friends and an abundance of love!

Wednesday, April 2, 2014

Cheating cancer one body part at a time...

How many surrendered body parts does it take to truly cheat cancer by BRCA mutation?  4 and counting….

The majority of women who test positive for a BRCA mutation view prophylactic mastectomy as the most effective strategy for reducing breast cancer risk.  Take out the ovaries too and we BRCA carriers reduce our risk of ovarian cancer from as high as 60 percent to something much closer to the general population average of 1.4 percent.

Seven years ago, when genetic testing for BRCA mutations was a relatively new option, the decision I faced seemed pretty cut and dry.  Keep the breasts and ovaries and very likely develop breast and/or ovarian cancer, or surrender some body parts and live a cancer-free life.  If only genetic mutations were so simple.  Since making that decision, science has had a lot more to say, mostly in the form of questions.

In addition to breasts and ovaries, BRCA mutations may also increase a woman’s risk of developing melanoma, leukemia, cervical, uterine, pancreatic, stomach, gallbladder (glad I don’t have mine!), bile duct cancers, and many others will be discovered I’m sure. Talk about a life sentence without any chance of being commuted! For the most part, medical researchers don’t know just how much BRCA mutations increase our risk of all these other cancers.  So what does a BRCA carrier do?  Wait?  Watch?  Push “it” out of our minds?  Keep “it” at bay with hope?  Dig in and search for answers?  Expel organs?

It depends.  Anywhere from all-of-the-above, to none-of-the-above, and everything in between. As family, we may share genes, but our responses to our genes are very much individual.  When and where does it stop?  Unfortunately for my family, not at our breasts and ovaries, not for at least 1 of us.  My maternal grandfather died from pancreatic cancer at the young age of 52. Unfortunately removal of my pancreas is not an option.

As BRCA mutation carriers, we have a lot to be grateful for.  We’ve beat a lot of odds, and yet such appreciation comes with a substantial burden, the burden of trading in body parts for a pass on cancer.  I just hope my tab is paid in full.

Friday, March 28, 2014

Choices My Mother Never Had

It will be 7 years ago tomorrow that I lost my sweet mom because of this damned genetic mutation!  Thank you for the gift of knowledge mom...I love you and miss you every day!

I was the first in our family to learn of the genetic mutation. Going by our family history, I inherited the mutation from my mother who inherited it from her father who inherited it from his mother. That was my great grandmother Lavina. Thankfully my sister tested negative which means my niece Maia will also be negative.  I have no children so this horrible mutation stops here!!!

This is the end of the line for you EX19DEL!  HA!

Knowing you are BRCA+ is often viewed as either a blessing or a curse. Yet, many days it certainly feels like both to me. I guess that is how life is...grey and not black and white, right? Nothing is ever perfect. Life is hard and full of tough decisions.

When all is said and done, to me, the knowledge is a huge blessing in my eyes. Not knowing wouldn't keep me safe. Knowing gives me choices...choices my mother never had.

My and my mom circa 1966.

Monday, February 24, 2014

Quick Update and Some Answers...sort of...

Successful but long day in London.  Just want to give a quick a nutshell, Dr. Ross says there's no way to determine what's causing my pain (scar tissue [capsular contracture], tightness [my left foob is definitely tighter he said] or nerve pain). He doesn't think it's nerve pain based on my description of the pain, but he can't be could be a combo of all-of-the-above. 

Long story short, my options are do nothing or have a Latissimus Dorsi Flap.  He doesn't want to put me through the ordeal of a DIEP flap because there's no guarantee it'll will solve my pain issues.

I'm 99% sure I'll go with the Lat Flap.  We'll talk about it and think on it while we're away on vacation, and when  we get home, I'll let Margo know what I want to do.

Off to Cuba in 2 days so have lots to do between now and then.  Will update when I get home and have made my final decision.

Sunday, February 2, 2014

Wearing my mutation with pride!

Back in December, I finally completed my BRCA Mutation Pride tattoo sleeve on my right arm.  I figured it was about time I shared!  I wear this with pride and it is definitely a conversation starter!

Saturday, February 1, 2014

It's about time!!!!

After a very long four month wait, I finally received my referral to Dr. Ross at St. Joseph's in London.  My appointment with him is set for February 24th, 2014 at 1:00.  Here's hoping the weather is good and the roads are clear that day!!!  I'd hate to have to cancel and reschedule after how long it took to get this appointment!!!!

I'll update again after my appointment with Dr. Ross.

In the meantime, I'd like to share the following article published on the Huffington post on September 14, 2013.  It's well said and so very true. 
My favourite quote from the piece is "But those of us who either opted to have mastectomies as a preventative measure, or had mastectomies as a life-saving measure, aren't excited about our "new boobs." In truth, we'll never be the same. We see ourselves differently now when we look in the mirror, because we are different, inside as well as outside."