Since Angelina Jolie decided to share her story, revealing that she underwent a prophylactic mastectomy and is a carrier of a BRCA1 gene mutation, I have been reading and privately reacting to all of the articles, blog posts, TV clips, radio interviews, and the commentary attached to them. Majority of the pieces are positive, some are negative, some are straight up offensive, some convey plain ignorance, and some are just wrong. I have been jotting down (on a napkin) the things that I wanted to address and planned on doing that on this blog.
Until yesterday … when I came across this blog post by Amber, who writes redd in the cities, It is just brilliant and captures everything (and more) that I wanted to share. Please take a few minutes to read Semantics or why I hate the phrase “Angie’s gene” and stop by Amber’s blog to learn more about her and her story.
Reblogged from redd in the cities:
Last week, I decided I wanted a reuben sandwich, and I was missing sauerkraut. Now, for my reubens, not just any sauerkraut will do. Nope, I have to have the best stuff, and there’s only one place I know of that carries it nearby. So I got in my car, strapped myself in, drove to the co-op that carries it and paid an ungodly amount for The Best Sauerkraut In The World. I got home, laid out all my ingredients and started drooling at the prospect of my delicious, most-craved reuben.
And then I couldn’t open the jar.
Why am I telling you this story? Well, it’s simple, really. I couldn’t open the jar because decreased strength in one’s pectoral muscles is a side-effect of breast reconstruction with expanders. This time ten months ago, I couldn’t even have strapped myself into a car, or even driven, for that matter. It’s little things like this that are the reality of life post-op – whether you’re me, or Angelina Jolie, or the thousands of other women who have opted for preventive mastectomy and reconstruction.
As a third-shifter, I am also up at ungodly hours of the night, so imagine my pleasant surprise when a member of my support group posted an op-ed on the New York Times regarding medical choices when faced with a diagnosis of a BRCA mutation. Then imagine my surprise when, halfway down the article, I read the phrase ‘my partner, Brad Pitt’. My eyes flew up to the top of the page and there it was, in that stark gray New York Times text: ‘by Angelina Jolie’.
I didn’t quite know it then, but the next 48 hours would be full of fielding questions, editing personal stories for Young Previvors, and tweetbombing a few of my personal favorite celebrities (sorry, Natalie Morales and Gideon Emery!) It’s only just now that I’ve actually had time to pen a few thoughts about what’s been going on.
Like most of my sistren in my support group, I was simultaneously thrilled by the prospect of an A-list celebrity speaking up and lending awareness to hereditary breast and ovarian cancer and dismayed by the media and public reception of said announcement. But it wasn’t until I read these articles that I started getting really angry.
“I’m 25, and I Have the Angie Gene.”
“I had the Angelina Jolie Mastectomy.”
Wait. What? I mean, all this exposure – great. You know what they say: “No press is bad press.” And while breast cancer is definitely on the radar – one need only take one look at the vomit-pink legions of websites out there to know that – ovarian cancer is sadly not as much, and hereditary exposure to eitheris sadly lacking a lot of coverage.
But when I read headlines like this, I feel like my experience is trivialized. Yes, Angelina had this surgery and yes, she was back to normal not too long after. So was I – I was back to work, in limited fashion, within a couple of weeks – but that is not everyone’s story.
Ladies and gentlemen, preventive mastectomy and reconstruction is not as easy as walking into a surgery center and walking out with a new set of breasts. Let me give you the dirty nasty of it, and this is from a textbook-perfect, no-complications procedure. From start to finish, these are some of the things I had to deal with:
- People questioning my decision. (to which I would have answered with this Tumblr entry, if it had existed last year)
- Getting the time off work and having to explain my situation to qualify for FMLA leave – an almost insurmountable task, in and of itself
- Deciding whether or not I would opt for a bilateral oopherectomy at the same time. I decided not to, but that’s a post for another day.
- Explaining my decision to every. single. well-meaning. nurse and doctor at the hospital where I had my procedure
- A two-night stay in hospital over Independence Day weekend, and sharing a hallway with a narcotic-seeking frequent flier
- Being under the influence of enough painkillers to down a horse for almost a week. One gets so excited about having a week off work until one realizes that entire time will be spent in an opiate haze (and don’t suggest marijuana to me; it’s more than my job’s worth to try!)
- Two Jackson-Pratt drains underneath my skin and wrapped around the expanders, which had to be drained three times daily. AJ had six. SIX?! I could barely even deal with two.
- Sleeping on the couch for two weeks, sleeping with five thousand pillows underneath me for three more, and not being able to sleep on my stomach for six months.
- The feeling of two rock hard pits of saline underneath my pectoralis muscles. Occasionally they would start to migrate toward my armpit, and in the early days, they wibbled and wobbled painfully under my flesh.
- Fielding well-meaning inquiry by coworkers, friends, and family, which is appreciated, but exhausting
- Exchange surgery in a day-surgery center. I cried more during my exchange than anything else: the nurses here were cold, rude, and performed their tasks in a way that was so perfunctory it bordered on brutal. I was in constant pain, they didn’t listen to me, and busted a vein in the process.
- Returning to work only to find out that no, lifting a four-liter jug of water and reaching for racks of samples is not a good idea four days post-op
- Getting new insurance and having to fight for nipple reconstruction.
It’s not glamorous, it’s not A-list; the above is the nitty-gritty, which is to say nothing – nothing – of what the ladies that call themselves the Complication Nation have to deal with. The worst part is that the articles that offended me so badly are actually well-thought out and well written. However, in a nation of people that read headlines and little else, suddenly I find myself having to explain that yes, everyone has this gene, it’s a mutation in said gene that causes my increased risk of breast cancer, and yes, really, it is not just breast but ovarian cancer, as well, and yes, absolutely I do think Angelina Jolie was brave in coming out in the face of all the public scrutiny she’d receive.
So, let me take the time to remind my readers, however many of you there are, of a few things.
When you are BRCA-positive, you have a lot of very tough decisions to make. The decision to remove my breasts was easy for me, but it can be very hard for others to make. I still struggle with the idea of losing my ovaries and am desperately hoping that the studies on salpingectomy (removing one’s fallopian tubes instead of all the plumbing) pan out.
BRCA mutations have been documented for years and research is ongoing. If you have the resources, I highly suggest donating to the newly-founded Basser Research Center for BRCA, which has ongoing studies in outreach, risk assessment, prevention of hereditary cancer, and treatment
Preventive mastectomy and oopherectomy are not your only options for prevention. Thousands of carriers of BRCA mutations, both female and male (and yes, men can and DO carry BRCA mutations, and it does affect them!) have opted for surveillance options, including semi-annual MRI and mammography, CA125 monitoring, and preventive tamoxifen regimens. If you are not comfortable with the idea of removing your tissue, you do have options.
Because I chose to remove my breasts, I did not opt for self-mutilation. I read this article and absolutely fumed. More accurately, I stormed around the house spewing expletives, none of which are appropriate for the blog, or for public usage. Doubtless some were creative, I’m sure. Let me emphasize this: While clean eating and exercise are always a great idea, for carriers of BRCA mutations, no amount of juicing, raspberry ketones, homeopathic treatment, or chemical avoidance will mitigate the fact that one of your biological pathways is broken.
I suppose that’s probably it. I will step off my soapbox for now, and leave you with some links and resources that may help you sort out this post-NYT babble:
Thanks for reading!
Image provided by Flickr user dullhunk. Used under a Creative Commons license
The story I mentioned in my last post, has been published in Sunday’s edition of The Virginian-Pilot. “At-risk local women take the fight to breast cancer” features stories of the two local FORCE coordinators and mentions this very blog. Check it out.
Breast skin is fragile after mastectomy. If it’s exceptionally thin after the breast tissue is cut away or is handled too roughly, it may die. The same result may occur if the breast surgeon severs too many blood vessels that feed the skin or uses eletrocautery too aggressively and burns the inside of the skin, which may then blister and die.
The HBOC community is buzzing today. I’m sure you’ve already heard the news: Angelina Jolie underwent a prophylactic 
Saying NOPE to Breast Cancer 