Saturday, August 2, 2008

Random thoughts, reflections, ramblings and feelings of insecurity...

I have known my BRCA2 status for a little more than four months now and I often have thoughts that I am different and abnormal because I have this genetic defect. I know that everybody has genetic abnormalities and that I am among the lucky few who happen to have defects that can be identified in these early days of personal genetics doesn't always keep these thoughts in check. I am lucky because I can do something to protect myself from these defects - but sometimes it is still hard to feel lucky or normal.

This journey often reopens the all-too-raw wounds of watching my mom pass away from ovarian cancer last year.

I also noticed along my journey that I build great anxiety before every medical appointment and often get very down a few days afterwards regardless of how the appointment goes. I feel sure this is because each time I see another doctor it reinforces the reality of my situation and makes it more difficult to deny. I often feel trapped between the fear of cancer, the fear that surveillance won't protect me, the fear of surgeries to reduce my risk and the fear of cancers associated with this gene that I cannot do anything about to reduce the risk of. I have been seeing many wonderful doctors and sometimes seeing the fear, sympathy or empathy in their faces somehow makes me feel bad - it reinforces that these really are tough decisions and there are no easy answers or solutions. I’ve been told by my doctors I have a 40% to 60% chance of developing ovarian cancer and a 99% chance of breast cancer. Like anyone who carries the defective gene, I might never get cancer, or I might only get it when I’m very old; but I’m not a gambler; especially with those odds.

I have received varying responses from family and friends about my decision to have a total prophylactic hysterectomy with bilateral salpingo-oopherectomy and a prophylactic bilateral mastectomy with immediate reconstruction…a father who doesn’t want me to have surgery, but understands and supports my decision; a grandmother who’s totally in denial about the whole thing; a sister and husband who fully support and encourage the surgeries; friends who totally support me; some who just don’t get it; others who think I’m mutilating myself; and every opinion in between. Some think I shouldn’t do anything until I get cancer and some that say cancer might be cured in a few years if I could just wait. I’ve received responses like "anyone can get cancer", "so, you have a bad gene, you'll be fine", or "you don't have cancer so what are you worried about?".

Lately, I often stare at myself in the mirror, imagining the loss of my familiar shape. I wonder, how will the man I love and married feel about breasts that will be surgically reconstructed, incapable of feeling his touch? What will happen to me emotionallly, sexually, etc. with surgical menopause post-hysterectomy?

The thought that I have this mutation is never far from my mind...at times I even second guess my doing the BRCA test. No going back now…

2 comments:

Wendy said...

Everything you are saying sounds perfectly normal for someone in your situation. Don't be hard on yourself, but just know knowlege give us strengle and unlike many people out there you can at least have some control over your body.
Take Care
Wendy

Tracey & Mike said...

We love you sis.
xo