Wednesday, September 29, 2010

It's National Previvor Day

Today is the first ever National Previvor Day. National what? You're probably wondering what the hell a previvor is, aren't you? Sounds like some kind of made up word. Well it is and I've blogged about it before, here. In a nutshell, a previvor is someone who has a predisposition to a disease such as cancer but has not gotten it. Steph describes previvorship well in her blog, here. I read a lot of blogs and they are all great and all written a little different and I appreciate all of their perspectives. One of my favorite posts, and one of the first that I read is one where Steph describes what it feels like at the plastic surgeon's office. It really hit home and I have it taped inside my journal. It shows one aspect of being a previvor: the anger and frustration we have with our options on how to beat cancer to the punch.

I consider myself a survivor and a previvor. What does previvor mean to me? It means that just because I had a little bit of breast cancer doesn't mean it's over for me yet. I've had two relatives survive bc only to die from a different cancer. It means that not only am I at risk of a whole host of cancers but so is my family. Only 4 of us have tested so far and thank god my little sisters are ok. That means all my nieces and my nephew are in the clear. And I thank god my twin has already undergone pbm and bso although I have not returned the favor to her! Being a previvor means you worry a lot about your family and yourself. And it usually means that we have lost family members to the fight, many whom never even knew about this mutation. Knowing you are a previvor means that you can take action. Surgery, drugs, tests, prayer, crossing your fingers, a little bit of luck...that is what it takes to previve.

They just created National Hereditary Breast and Ovarian Week and National Previvor Day a couple of weeks ago. We need to create awareness about hereditary cancer. Although the brca mutations were discovered about 15 years ago you'd be surprised at how many doctors and medical facilities are clueless about them. My twin's pcp didn't know anything about it and had to consult with her myriad rep and read the fact sheet. That's reassuring! My little sister was told at her giant breast care center that she need not bother getting a mammo every year because the breast cancer was on my father's side of the family. That's ignorant! I knew of my father's breast cancer for the past ten years and never heard that it could mean bad things for me. That was potentially deadly! So while you all might be so sick of the breast cancer commercials that flood the month of october, I hope that the hboc commercials will start as well. Maybe the message will get through to our health care providers and to some poor soul who knows their family history is fucked up but doesn't know why.

What am I going to do in honor of this week? I need to finish telling my family that we have a brca2 problem. Yeah, I'm ashamed to admit that there is still one aunt out there that I never told. I don't know her and I don't even know how many kids she has. I didn't know my uncle. He died pretty young from stomach cancer. Who knows if he carried the gene but my guess is yes. I told most of my family last fall that I tested positive. It was a really difficult thing to do. I felt like this bad news was all my fault and that I would be ruining their lives. From my aunts and uncles I received sympathy for my breast cancer but no mention or questions of the mutation. I worried that they had not passed on the word to their children and I was right. From some cousins I talked to I found out that they all knew our family history and all worried about breast cancer and had been getting mammos. I felt a little let down. I didn't know my grandpa and two aunts had also had breast cancer. I hadn't been getting mammos and neither had my twin. I also felt discouraged because I don't think, a year later, that anyone outside of my sisters has tested for this. And that's up to them but I also don't think they have told their kids about it and if that is the case, that's not okay with me. My cousins are all older than me and their kids are all hitting their twentys. So yeah, pour on the commercials, make some giant billboards and spread the fucking word.

Thank you Sue Friedman from FORCE and everyone else who pushed to make this happen.

3 comments:

  1. National Previvor Day recognizes a community and hopefully will bring more research money to this community. thank you for your blog. Check out www.previvors.com to see a new book launching on October 5th. We even have an iphone app!

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  2. Janine...love your blog. Can you add us to your blogroll? www.previvors.com/blog

    thank you!!!

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  3. I'm having technical difficulties trying to link to your site but I'll keep trying. Can't wait to read your book!

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