Wednesday, May 28, 2008

My BRCA Support System

One thing that was brought up a lot at the conference was the importance of having a good support system, so today I'd like to talk about mine and invite you to think about yours.

First there's my dad (and I list him first because he's hands down the most important person in my life). We're very close since my mom died when I was 3, leaving him to raise me. We always had a great relationship growing up. My brothers were much older and left the house for college when I was still young, so from then on it was dad and me. You can definitely call me a daddy's girl. He's a wonderful man - smart, funny, insightful, helpful, always there for me through everything, sometimes harsh but I can always tell it's because he loves me and he always apologizes later.
He's the one who had me take the test in the first place, because he's a gyno and very up on women's health issues, plus we had a feeling something ran in our family. And he's been great ever since, helping me schedule appointments and contacting doctors and just gathering as much information as he can for me.
There was one moment at the conference that was really hard - there was an older man there who was BRCA positive and his daughter tested positive as well. He was talking about his fears, and one of them was (and he choked up while saying this) his daughter dying before him. I couldn't help but cry thinking of my own father and how hard this news must have hit him considering he watched my mom die and saw how it affected our family. But I think we were extremely strong then and we'll continue to be strong now and through whatever happens.

Then there's my stepmom, who is just wonderful. She came with me to the FORCE conference because she, like my father, is helping me gather information and learn all I can. She's a great person all around and I know she'll always be there for the family.

Then there's my boyfriend. Now... I know some of you might think "this girl is only 22, how serious can it be?" But I feel like he is "the one", and I'm not someone to jump to those heavy conclusions very quickly. He's been great about the whole thing.
After I got my test results, there was a night where I was freaking out and talking to him on the phone. He didn't say much, and I didn't expect him to. But the next day, I received an email from him saying that he knew I was worrying about alot, but him loving me wasn't something I had to worry about. He said he loved me for me and not for my boobs or my genes, and that was enough to make me cry all over again! I knew I found a good one, and if BRCA is going to make me settle down and have kids earlier than I expected, I hope it'll be with him.

Phew. SO that was just a wonderful little love-fest wasn't it? Even if you don't have a dad who's a gyno or a boyfriend or family members that help you research, it's crucial to find SOMEONE to be a support person who you can talk to, who will help you through hard times, and who will be neutral and speak reason when you may be freaking out. They stressed this a lot at the conference and I agree.

And now I ask... who makes up YOUR support system?

Wednesday, May 21, 2008

BRCA helps me procrastinate

So I'm procrastinating at work (story of my life, also why I don't direct my colleagues to check out my blog... well... that and other reasons) and I just wanted to say a few words about the FORCE conference. It was really wonderful and life-changing.

At one point during the first day, everyone was in a big hall listening to some opening remarks and I looked around at all the women (and some men) gathered and had this overwhelming urge to just burst into tears. I think it's because I was so warmed by the thought that this many people would gather together and openly share their stories, their hope, and their encouragement. I felt like I was part of a community of people who are all struggling with the same issues with the same fears and decisions to make - rather than an individual battling alone and in silence. The whole conference was worth it just for that sense of togetherness and support that it generated, and I'm really thankful I got to be a part of it.

Of course it was also great because of the wealth of information presented, much of which I promise I'll describe soon. In the meantime, I know I mentioned FORCE before but please take a look, if you haven't already, at their website facingourrisk.org. It's got great information and a very active message board.

I am not alone, and neither are you.

Friday, May 9, 2008

Algunas Cosas, and FORCE conference

First off... is anyone reading my blog? If you are, PLEASE write me messages. Don't just stop by and half-ass it. Talk with me. Ok? Thanks. I take valuable time out of my day to write. You should do the same. (Actually, my job is boring and I write to procrastinate, but that's not the point)

Second... next week I'm heading to the FORCE conference in Tampa with my stepmom. I'm not sure what to expect, especially since I think she registered me for all the courses and I really haven't checked anything out myself. But I'm hoping it will be enlightening and that I'll meet lots of people, and also that I'll have a lot to write about when I get home. I promise to take notes and report back diligently.

Third... even though people haven't been commenting on my blog, I myself have reached out to a few people and am happy to say that I've been having stimulating conversations with people about the issue of BRCA. I've thought of lots of important avenues to explore: family networks and other support systems, screening measures, how love-life is affected, health insurance, implications of getting the test, etc...

I realize most of what I've been doing so far is posting articles, and I haven't really sat down and explored any of these issues in detail, so I plan to do that soon. (aka when I have a project at work that I REALLY don't want to get started on)

I think that's about it. I just wanted to post cause I haven't posted in a little bit. And I'm moving into Center City next week (SO EXCITED) so I probably won't be able to post before I go to the conference (leaving next Thursday the 15th). Also this weekend is my 5 year high school reunion. WHEN did that happen?

Happy Friday!