A couple weeks ago there was a notable controversy in the world of cancer and social media. A husband and wife, both journalists, wrote two separate articles in popular media that questioned the choice of stage IV breast cancer patient Lisa Bonchek Adams’ decision to tweet through her experience. The articles, published in the Guardian and the New York Times, respectively, weren’t overtly nasty but they did call Adams’ tweets things like “the equivalent of deathbed selfies” and say that it may be more heroic to die quietly than to fight cancer to the death.
The Guardian article, by Emma Keller, has been removed, but here is an editor’s note about it. The husband, Bill Keller’s, article is here.
And a wonderful Time Magazine piece about the whole thing can be found here. I wholly agree with one of this article’s points – that if you don’t want to read Adams’ tweets, you don’t have to.
I don’t have anything wildly intelligent or insightful to add to this conversation, but it’s worth sharing. I find there to be so much cancer-shaming in this world – people telling others that they are somehow doing things wrong or making others feel bad or whatever. Heck, I did it myself in the post about the video of the woman who danced before her mastectomy. I think it’s natural for humans to do this, and though I’m not thrilled about it happening in ultra-public forums such as New York Times, I do realize that this is the age of the Internet when everyone has a wide-open land in which to share their views.
Ultimately, everyone’s entitled to their own opinion. Remember my new motto – “feelings are never wrong.” But sometimes, especially if those feelings might hurt others, it’s best to keep them to yourself. And even BETTER than that, is to dig deep within yourself and try to accept that everyone is different and everyone deals differently, and not judge others too harshly if they choose a path that is not the same as yours.
Can’t we all just get along?!? In conclusion, here’s a T-rex covered in snow.
Several news sites were abuzz yesterday with the prospect of the FDA revoking its approval of Avastin, a drug used to prevent tumors from growing in people with very late-stage breast cancer.
Here’s an article from the Washington Post: FDA considers revoking approval of Avastin for advanced breat cancer
While it’s not immediately relevant to my situation or that of many previvors, it was shocking for me to see how expensive these cancer-treatment drugs are. The article says that the producing drug company has a program that caps yearly payments at $57,000 for women with income less than $100,000 – that’s more than HALF the woman’s income spent on one drug! Crazy.
I also want to send thoughts toward another woman who blogs about BRCA and is a great supporter of our mutated little community. Teri Smieja, whose blog is here, has been struggling with some post-surgery complications. You can read about them in her August 14th post.
While I have not yet decided to have surgery and I don’t see myself having surgery for a while, reading about this does make me scared for the day it eventually happens. Please support Teri in her journey and let her story be a warning and a learning experience in your own BRCA journey.
I’m blogging about BRCA at work. Actually, I’ve made all the posts to this blog during work. Maybe it’s because when I get home, all I want to do is sprawl on the couch and watch TV. Or maybe it’s because I have an aversion to actually doing work. Or maybe it’s because reading and blogging about BRCA are much more interesting than my job. Either way – I hope my boss doesn’t find out.
I’ve been searching the blogosphere trying to connect with other BRCA bloggers, and it’s amazing how many I’ve found! I honestly thought I had a novel idea, sharing my thoughts about BRCA in a blog. Of course, no one has EVER done that before! Well I was wrong. Really wrong. But I’m not upset at all. I’m really glad to know there are several women out there who are willing to share their experiences, and I’m happy to connect to them from my blog because we’re all in this together (please excuse the cheesy High School Musical reference). Anyway, here are two that I found recently, and I am sure that I will be adding more every so often in the future. Probably when I’m at work.
I’m a Mutant by Sandra Ginzburg
Goodbye to Boobs
I am adding a link to Kathleen T. Ruddy’s blog. I stumbled across it today after someone posted it on Facebook (praise Facebook!) and though it’s not directly about BRCA, it does have a lot of sound information on studies related to breast cancer. For us BRCA-ers, it’s a good source for learning about preventative measures like drinking more soy or taking tamoxifen. Ruddy is a breast surgeon who founded the Breast Health and Healing Foundation.
It’s always great to find sources where research and medical information are presented well (and in terms I can understand). There’s so much out there that people with BRCA should be keeping up on, and people like Ruddy make it all the more easy on us!
This blog is about boobs. Ok, to be fair it’s also about ovaries and uteruses and cervixes and other womanly parts… and how all of those things are affected by two silly little genes called BRCA1 and 2. I’m about to turn 24, and a year ago I found out that I had a BRCA1 gene mutation – which means I am three to seven times more likely to develop breast cancer in my lifetime than any given woman walking down the street (in her non-BRCA genes). I also have an elevated risk of ovarian cancer.
The news was not shocking. My mother died of breast cancer when I was three, and her mother died of ovarian cancer before I was born. My dad is a women’s health professional, and I always knew from my own experiences and my dad’s insight that I had a high risk of developing a womanly cancer such as the ones that claimed my mother and grandmother’s lives.
But seeing the news on that piece of paper made the situation all too real. I went through a sudden frenzy – what should I do? who should I speak to? how can I change my life? how can I get my life started? will I die soon? why am I even thinking about these things at such a young age? – but I’ve since had time to reflect. I’ve decided that as crazy as it may be, knowing is a blessing. I can start learning earlier; I’ll always be vigilant; and I have a chance to share my story with others who may be in the same boat.
That’s why I’m starting this blog. For other young women dealing with BRCA who want information, a friend, or just to see that they aren’t alone.
So please enjoy and share your thoughts. On the surface BRCA is all about boobs, but underneath it’s so much more.