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?

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.

Ciao!
Cara

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.

Susan G. Komen reminds me: I really need to get to the gyno

It's true. I need to schedule a gyno appointment. There's really no excuse considering a breast exam could save my life. A year ago I would have said screw it... I can wait a few months to have a cold metal object shoved up my vajayjay along with enough lube to make a small country slippery. But now? The gyno is not an annoyance... it's a priority and a new ally. I might even take this opportunity to shop around for a gyno that I really like! But then again... who knows what health insurance i'll have in a few months.

But on to the real reason for this post... Susan G. Komen for the cure is a great, extremely active non-profit that has a website with a lot of great resources, such as the one I posted. They also host a bunch of benefits and fundraisers, such as the Breast Cancer 3-day, which is coming to Philly in October and I'd like to round up my family to participate. I've never done a walk or anything before... and now is as good a time as any to start!

If anyone reading has participated in a similar event, I'd love to hear what it was like. Ciao!

Universal Shmuniversal?

For some reason (and I don't think I'm the only person who notices this), I've been extra involved in this year's primary. And I never really cared about politics before.

I've mostly been listening to candidate's positions on Iraq, the economy, etc... but I haven't thought much about their healthcare policies. This morning, though, I realized that as someone who is BRCA positive, healthcare is something I should really care about! Now both my parents are in the health profession (my dad a gyno, my stepmom a maternal fetal nurse), so I've always taken it for granted that my healthcare needs would be met. I've also been well-advised by my dad since he knows so much about health issues that affect women, and since my mom had cancer 19 years ago, we're good friends with doctors, nurses, counselors, etc. who have been working with breast cancer for many years.

It's GREAT.

But I realize everyone is not so lucky, and I'd love to hear what other people think. The idea of Universal Healthcare seems great to me. Everyone would get the care they need without shelling out an arm and a leg. But I'm scared about the possibility of lengthy wait times, especially if I happen to get a chronic disease. I'm also scared about the availability of resources. With so many obese people, smokers, and unhealthy people in general, who's to say someone with cancer will be a priority? (Of course this begs the question, why should some health complications take precedence, isn't that unfair? But that's for another day... or month or year).

But I also think the way healthcare works now is advantageous because it allows people who have more to get more. And as one who has more, that puts me in a good position. Again, I realize everyone is not so lucky.

So my (very general) question is... what do you think about the healthcare debate in regards to women who are BRCA positive? Which system would work best for us? Or what kinds of reforms could work in either system to give us the best possible chance at prevention, cure, recovery... etc.

(Am I even asking the right question?)

When I first saw this article, I was kind of furious. It paints genetic testing as such a negative thing... as in companies are just doing it to make money and it's very hoaxy and not accurate. I guess what upset me is that the article doesn't highlight anything GOOD about genetic testing.

But then what REALLY irked me were the comments people were making to the article. (USAToday lets you view reader comments... I find it interesting to read what the common person has to say about the news...) People wrote things like "Only rich people would do this but they should just donate the money they would spend to charity" or "We're all going to die eventually, why would I want to know what diseases I have?"

How could people be so insensitive? Some of these tests are beneficial because they can jump-start lifestyle changes and healthy behavior and other preventive measures and... Well, I could go on but I don't think it's worth it to spend my energy getting worked up. It's just a silly article presented in a negative light.

And here it is...


Companies cash in on checking your DNA for disease

By Rita Rubin, USA TODAY

Several new companies are betting consumers will be curious enough to shell out $1,000 or more to learn what diseases might lurk in their genes.

Using a half-teaspoon of saliva, collected at home and mailed to a lab, companies with catchy names such as de-CODEme and 23andME (for humans' 23 chromosomes) are selling the chance to peer into one's genome, the hereditary information encoded in DNA.

The Genetics and Public Policy Center in Washington, D.C., has identified eight companies marketing a "personal genome service." They test for common gene variations linked to a higher risk of leading killers such as heart disease. Other firms market tests to detect genetic susceptibility to specific conditions; one for late-onset Alzheimer's is due this spring.

The tests raise a host of ethical and practical questions: Why should people be tested to see whether they're at risk for a disease they can't do anything about? What will they do with their results? What safeguards are in place to protect their privacy?

In The New England Journal of Medicine on Jan. 10, Harvard epidemiologist David Hunter, Muin Khoury of the Centers for Disease Control and Prevention and Journal editor Jeffrey Drazen called efforts to popularize genetic testing "premature." The diseases listed by test sellers involve multiple gene variations — many of which aren't yet known — that interact with each other and the environment, they say.

Linda Avey, who is co-founder of 23andMe in Mountain View, Calif., disagrees. "The debate is sort of over," she says. "There's so much interest and pent-up demand for this." Her firm charges $999 for a genetic profile. She won't say how many customers have paid for the test.

Among the more targeted tests, HairDX in Irvine, Calif., says for $149 it can tell men whether they're likely to start balding at 40 so they can "make the right decisions to preserve" their hair. Then there is Alzheimer's Mirror, which tests for the one known genetic risk factor for late-onset Alzheimer's.

"My big concern is that these tests are massively under-regulated," says Kathy Hudson, director of the Genetics and Public Policy Center. "There's nobody looking seriously at whether the claims these companies are making about the tests are accurate."

Why I'm here

The first few minutes of 2008 found me on a porch watching red and gold fireworks exploding in the distance. Behind me a rowdy group of my college friends chugged champagne straight from the bottles, and to my side they lit up cigars and congratulated each other on making it through the year.

Even with all the noise and light and excitement, I felt isolated. In my bubble everything was silent as I contemplated the events of the past year. Well… actually just one event — finding out that I was positive for the BRCA1 gene mutation. I had always known my risk of getting breast cancer was elevated. My mother died from it when I was three, and her mother died before I was born from Ovarian cancer. But actually seeing a piece of paper from a real lab with a percentage and a confirmation that I, in fact, was 3-7 times more likely than the average person to get breast cancer by the age of 70, really shocked me into thinking about things I had never thought about before. And that’s why, right there on that tiny porch, as the vapor of my breath mushroomed around my face, I resolved to share my thoughts and story with anyone who would listen.

So - here's my blog.

It's a place for me to share my hopes, fears, musings, and findings on the topic of BRCA and cancer risk. Please enjoy it and I'd love to get some feedback or start up a dialogue with anyone who is interested.