Tuesday, May 14, 2013
The Day Mastectomies Became Hip
I hadn´t intended to write a blog entry as I was busy being firmly camped on the island of self misery this week. After a week of sheer hell last week, I unfortunately caught a nasty cold from my little monkey and am busy blowing my nose every minute and feeling downright lousy. It makes me so angry as this is the one week that I am supposed to feel okay. Next week it will already be time for the next treatment and I am terrified. So you can understand my frustration at having my "free week" robbed from me due to my non existent immune system. Looks like the freaky outbreak-esque masks didn´t quite work. :(
But onto the main point behind this blog. I received many messages about Angelina Jolie´s news today and I am certain she will be heavily discussed in the breast cancer blogging world. The perfect and virtuous Angelina is actually in fact BRCA 1 positive which means like myself, she carries a lifetime risk of 85% of developing breast cancer and a 50-65% chance of developing ovarian cancer. When the odds are stacked so heavily in the cancer corner, her decision seems like a no brainer. (Just so you all know - less then 5% of all breast cancer diagnoses are BRCA related. There are two BRCA genes - 1 and 2 that basically propel your body to want to grown tumours rather then supress them. Check it on wikipedia for more info). But of course it never is as easy as it seems. Nothing is ever straight forward or sense-making in the world of cancer. One thing that did irk me about the article is that she discusses the extensive genetic testing, nipple analysis, and state of the art reconstruction she underwent and how she was able to continue working etc...The reality is that Angelina, unlike many of us, has millions of dollars at her dispense, a team of nannies and staff and has access to the absolute best in medical care. For the rest of us it is not so simple. Living in a country like Norway and its amazing health care system, I still struggled through my own experiences. Just last year, I decided against reconstruction for my one healthy breast when I removed for preventative reasons. Why? After a year of treatment and procedures, my husband and I could not imagine having to deal with a long recovery again and the stresses of looking after our daughter through it all. And i thought about what I would do with one sorta normal looking boob and nothing on the other side. I actually thought being symmetrically flat would be easier to work with then the uni-boob look and it kind of is. But the trauma of waking up to nothing there versus reconstructed breasts is like night and day. I am definitely not trivialising the women who are able to reconstruct immediately because none of this is easy - it all sucks. But it is a different experience to have nothing there. When Angelina talked about how it didn´t change how she felt as a woman, I just can´t echo that sentiment. It has dramatically altered who I am as a woman and it has also taken a huge part of what makes me one. I am not comfortable with that part of my body anymore and it serves as a very real and very visual reminder of my experiences. Something will always be missing...
I am hopeful though that someone as huge as Angelina coming out with her own story will help raise more money for BRCA research and highlight this cause. I still find the fact that the best solution we have available today for women suffering from this genetic mutation is the removal of body parts. It just seems so barbaric to me. There has to be more out there for us...for our children.
I also have realised that the experience of finding out you have the gene before you develop cancer is an entirely different experience to mine. I cannot begin to imagine how those people feel discovering they have these time bombs and no idea when they will detonate. I lived in ignorance of my status until I already got cancer so my decisions were quick and there werent really any decisions to make. It had already been made for me. I had to do everything in my power to ensure i didnt suffer through cancer again because i had lived it already. I knew how unbelievably horrific it all was. But when you aren't facing your enemy head on and it is rather a threat, it must feel so different...maybe more conflicting? You are having to remove perfectly healthy parts because you might get cancer. So very different to actually having cancer. So I feel for my BRCA sisters and the difficult decisions they must make. But if a pink sister can give any advice (and I have cancer so you have to listen to me!) - If I could prevent just one woman from going through what I have lived for the past two years, god that would make me feel so good and maybe make this blog worthwhile. I often think about how things would have been different if I had known about this threat before it took over my body. Would I have been able to save myself from this? What would I have thought about it all and how quickly would I have done something about it? Would I have hidden away from the truth or faced it head on? All I know now is that I would give anything to be sitting here with two breasts filled with silicone that maybe looked alittle different then be faced with what I am living through today.
Love to you all!
PS: I am still waiting to see what happens on the hair front. All bets are on - will it stay or go? The truth will be revealed soon.