Latest information on my preventative mastectomy journey: I’ve now had three consultations at UAB and plans are moving forward. I won’t know anything further until I have a plastic surgery consult about reconstruction later this month. I expect that appointment to result in final preparations and for a surgical date to be set sometime in February or March. I will write about my journey again at that time.
I’m not sure what I thought would happen when I wrote about being positive for the BRCA gene mutation on The Huffington Post but I didn’t expect that over 500,000 people would read my words. I didn’t expect such an outpouring of support and encouragement from people all over the world. And I sure didn’t expect criticism from total strangers or dogmatic pronouncements about my “uninformed” decision.
The first negative comment was a surprise. “You must be trying to be like Angelina Jolie.” Really? Is this a joke?
But comments in that same vein continued, along with messages saying “Please read the attached article,” one after another slamming the so-called “Angelina Effect,” the name given to the increase in the number of women undergoing genetic testing after Mrs. Jolie’s New York Times op-ed, My Medical Choice.
I’ve been sent articles that say Mrs. Jolie’s decision to share her medical choice with the world was somehow connected to an under the table deal with the company who, at the time, owned the patent on the BRCA mutation test (the Supreme Court has since ruled against Myriad Pharmaceuticals and their attempt to patent gene mutations). In messages to me, people called her “stupid,” “foolish,” and “daft” and someone referenced the “questionable lifestyle choices that led to her BRCA mutation.” I’m no expert, but my understanding is there are hereditary mutations and acquired ones, with BRCA 1 and 2 being hereditary…if you have those gene mutations, you inherited them from one of your parents and they’ve been with you since your conception.
One person said in an email, “If Angelina ever actually gets cancer, it will be because she and Billy Bob drank each other’s blood and she used to shoot up heroin, not because she has some gene problem.” Really? Are these real people?
Obviously, I don’t know Angelina Jolie but I do know Billy Bob Thornton and he is one of the most down-to-earth, good ol’ Southern gentlemen I’ve ever met. He’s been a guest in our home and we’ve been to his.
I am confident that he and “Angie” never drank each other’s blood but even if they did, show me the evidence that drinking blood causes cancer, please.
Besides the Angelina Jolie haters, I’ve heard from holistic medicine advocates, those who don’t trust the “medical establishment,” people who believe that all cancer is caused by lifestyle choices and can be prevented or cured by eating a certain herb or root or, I don’t know…clicking your heels together three times while throwing salt over your left shoulder?
People have told me that if I choose preventative mastectomy, I will be mutilating myself for no purpose, that I will be playing directly into the hands of some huge conspiracy between pharmaceutical companies and surgeons, that I will be cutting my life short by the surgery rather than extending it. One person actually wrote me this question: “Without breasts or ovaries, how would you be any different from a man?” Really?
None of these people offered up any credentials but I doubt they are doctors, researchers, genetic scientists or other experts. I’ve personally met with all of the above and while all of them have presented me with options, information about the importance of diet and lifestyle, statistics and concrete evidence, none of them have told me that by eating nothing but turmeric or curry or if I eliminate all dairy products from my diet, I will never get cancer and will live to be 110.
I’m confused about who these people are. The people I’ve heard from who have actually been affected by breast or ovarian cancer, either themselves or through a loved one, and those who are BRCA positive have offered a universal message…do your homework and then make the decision that is best for YOU. They have said things like, “here are resources you should know about” or “here’s what happened to me” or “this is what my wife decided to do” followed by “I hope this information helps you” and “you are not alone” and “thank you for sharing your struggle, as I’m feeling the same emotions.”
Dogmatism is defined by Webster’s as “the tendency to lay down principles as incontrovertibly true, without consideration of evidence or the opinions of others.” People who are dogmatic think just because they believe something, it’s so. The people who have questioned and criticized my choice are absolutely convinced that theirs is the right opinion. But we all know what they say about opinions.
Obviously, I opened myself up to receiving this negative input by writing publicly about my choice and the conflicting emotions I feel about it. I accept that and frankly, have had more than a few cathartic laughing spells as I’ve read the pontifications, proclamations and dire predictions from the people who are so convinced they are right. And maybe they are. I don’t know because I take a pragmatic view.
I chose to share my medical dilemma because I wanted to know if other women in the same position had ever felt the same way. I wanted to know what other women with the BRCA mutation chose to do. I wanted to know what options were available in other communities. I wrote about my feelings because even though I think I’m tough, I’m not as tough as I thought I was. I’ve lived for 28 years with Crohn’s disease and have endured my share of health issues but the thought of electively removing my breasts and the pragmatic reality that I have an enormous risk of developing breast cancer regardless of anything I may change about my lifestyle to prevent that from happening…well, frankly that knowledge brought me to my knees.
I am encouraged, inspired and humbled by the words of support from friends and strangers, by the sharing of personal medical decisions from women around the world, by invitations to join uplifting social media groups where vital information is shared by previvors and people already battling cancer. I might not have sought a third and fourth opinion if I hadn’t written that post and I definitely wouldn’t have been invited to have a two-hour meeting with one of the world’s leading genetic researchers (a post on what I learned in that visit is coming soon). If the price for all of this insight and advice is a few haters, then I’m happy to pay that price.
As for me trying to “be like Angelina Jolie,” in my humble opinion she seems to be a pretty solid person who uses her resources to address issues that matter to her. That’s what I’m aspiring to do through my organization and The Johnny Stallings Arts Program so maybe I am trying to be like Angelina Jolie.
Which is exactly why the next post you read from me won’t be about my boobs or my medical decisions but will be about something much more important and way more interesting…it will be about the people with special needs who have changed my life.