Tuesday, August 19, 2008

Christina Applegate? Cancer? BRCA1+? You betcha.

So apparently Christina Applegate had breast cancer. I don't remember hearing anything about it. But according to this USAToday article:


she is having a double mastectomy with reconstruction... and she's BRCA1 POSITIVE!

Let me tell you why I think it's so significant. First off she's young and a popular actress with young women - a household name even. And she's being pretty outspoken about it, it seems. So I think this is a great opportunity for the world to take notice and for her to be an active member of the BRCA/hereditary-high-risk community. The article says she's starting a program to give women more affordable access to MRIs and she's also appearing on a one-hour special about cancer on TV. So yay for that!

It's funny because right after the FORCE conference, my stepmom was saying how FORCE needs a celebrity representative to get the word out to more people. It needs Hollywood! (I know that's a sad notion and it doesn't really need Hollywood, but it would be nice and a big boost.) Well - now the opportunity is here!

I wonder if more actors/actresses will come out of the woodwork with their family histories and testing?

Here's a quote of hers from the article to leave you with, and I think it's very true:
"Sometimes, you know, I cry and sometimes I scream and I get really angry and I get really like, you know, into wallowing in self-pity sometimes," she said. "And I think that's — it's all part of healing, and anyone who's going through it out there, it's OK to cry. It's OK to fall on the ground and just scream if you want to."

SO MUCH good luck to Christina. We're rooting for you!

Monday, August 4, 2008

Who you gonna tell?

So the other day my boyfriend and I are in my apartment entertaining my aunt and cousins, and they see a poster that I happened to receive at the Fox Chase In Our Shoes event. My aunt says, "That's a great poster, where'd you get it?" I was about to blurt out "Oh, Fox Chase at this BRCA event" but then I realized... SHE DOESN'T KNOW. And I don't exactly WANT her to know either. So I said something about an event that was for women at high-risk for cancer, thinking that sounded like anyone, and she didn't question it. My boyfriend on the other hand started to press the issue... saying something about how I got it free because I was speaking at the event... TMI.

So it got me wondering... why NOT tell my aunt? I mean I've got this friggin blog out there for all the Internet and their moms to see, and I won't even tell some of my own family members? I didn't tell my grandparents either. My immediate answer is that they're very prying people, and I don't necessarily want to explain it to them. Also, it might freak my grandparents out... they're old and decrepit and have their own health problems to worry about. So i'm protecting them, maybe even protecting myself from having to explain the whole thing. Saving my own breath. Maybe not the best reason, but my reason nonetheless for the time being.

I think the issue of who to tell is a hard one. If you want to be an activist, you're going to have to tell people. You're making the news public so you can encourage the public to care (which I'm all for, they totally should). But you have to be ready for what that means for you.

And then there are some people you have to tell for the good of your relationship with them. Your husband or serious significant other, for instance. Your parents, probably. Maybe your best friend? You want the support of these people, so you should let them in.

But I think it's ok to keep it a secret from some others. I don't think i'm a bad person... maybe a little bit selfish, but it's where I am right now and I understand that and I'm at peace with it.

Oh... and on the issue of writing a blog, I'm here to connect with others who might share some of my sentiments. Not to publish personal information. And I'd like to think this is a little bit anonymous... I mean I'm not posting pictures of myself (YET) or giving out my address.

What do YOU think?

Monday, July 28, 2008

It's been a while, but I'm still here!

Hey there blogland. I'm sorry it's been so long since i've posted but a lot's been going on. I know that's not a good reason to neglect you, however.

I just wanted to give a quick update...

First off - I climbed Mt. Washington (one of the highest mountains on the east coast, highest in the northeast) and it gave me a great sense of personal accomplishment. I will post pictures so as soon as I download them. It doesn't outwardly have much to do with BRCA, but when I think of it as a milestone in my life and a challenge that I completed and was proud of, it inherently connects. I guess it's because A) it's metaphorical for a big thing in my life and B) it's something physical that I was able to do. Exercise is a big thing for me with BRCA, and I trained for this and then did it in good time (though I was quite sore afterward). Now I just have to set goals for myself so I keep running and exercising.

Second off - I made an appointment to see a specialist who I've heard good things about, just to see if maybe she could be my contact for all things BRCA, and also the place I went to for regular screenings. Let me tell you... getting an appointment was a nightmare. These people only have ONE person working to get appts for new patients... and it is MUCHO hard to get in touch with her. As much as that pissed me off, i'm glad I got the appointment.

And here's another thing that's been on my mind... I really want to quit my job because I hate it and I hate my commute and I want a new one NOW. But I'm so scared to not have health insurance, even if it's just for a month or so. I'm not sure what to do, except maybe quit and immediately opt for COBRA or an individual plan for as long as I need to. We'll see. Dammit... why is this even an issue? Shouldn't we all be able to just see doctors when we want to? Anyway as you can tell I'm quite frustrated right now...

Alright that's all I'll give you for now. But tonight I'm going to attend a workshop at Fox Chase Cancer Center for young girls who may be at high risk. It's goal is to inform them of testing, how it works, what it means, etc. but also talk a little about the implications. I've been asked to share my story, which I'm SO willing to do. So I'll let you know how that goes.


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!

Wednesday, April 23, 2008

Sometimes Congress does good work...

Check this article out, it's about a new bill Congress is close to passing called GINA (Genetic Information Nondescrimination Act):


Imagine being able to take a genetic screening test without worrying that you'll be denied health insurance. Sounds nice doesn't it? This bill would give us that peace of mind. It would also allow people who haven't gotten testing to come out and get it because they won't fear living with skyrocketing insurance premiums. Well done, Congress. You put a smile on my face this morning.

Unfortunately though, I have to note that the bill does nothing to alleviate high costs of health insurance. Maybe that's "Step 2"? Or how about finding a cure for Breast Cancer. Can that be step 2? Please?