Sunday, February 23, 2014

Dear Media, Please Leave Angelina Jolie and Preventive Mastectomy Patients Like Me, the EFF Alone.

Ever since I shared my plans for a preventative mastectomy, whenever boobs are in the news -  I hear about it. Someone sent me a link to the woman who made her medical team dance for her prior to her mastectomy, I also saw the Australian woman who publicly shared her naked post-mastectomy pictures on Facebook. My inbox was graced with the recipe for making “mammo-grahams”, I saw the story about the mastectomy scar covering tattoos, the study that said mammograms aren't effective, and the study that said preventive mastectomies save lives. These boob related topics all made their way to my inbox or Facebook page, often accompanied by the question, ‘what do you think’?
Most I find inspiring. The Australian woman is my favorite so far. The preventive mastectomy study was validating, and the tattoos blew me away. But then there was the article with the horrific title, “How Angelina Jolie was Duped by Cancer Doctors Into Self Mutilation for Breast Cancer She Never Had.”  I know that the friend who sent it to me meant no ill-will and was just curious of my opinion like everyone else, but I do take issue with the article, as well as anyone who places judgment on Angelina, myself, or any other women choosing a preventive mastectomy. And since the article’s title is so offensive, by simply breaking it down and addressing each word, I can defend all the reasons why I believe preventive mastectomy patients should be left the eff alone:
“Angelina Jolie” : the article title starts by singling out Angelina Jolie, clearly because she is a celebrity who publicly shared her story and also because using her name brings attention to the article and sells stories. Angelina and I are mothers with good intentions, making informed decisions about what is best for us and our children. Isn't that enough? It is as unfair to judge us for having preventive mastectomies as it is for judging a mother for working or not working, nursing or not nursing. I would like to believe we live in a society where women support each other and the choices we make. I get that Angelina is a public figure, so her activity is free for public debate, but this wasn't an issue she chose at random to be a spokesperson for. The harsh reality for Angelina is that she was moved to genetic testing after losing her mother and aunt to ovarian cancer. Yes, Angelina and I chose genetic testing and preventive mastectomies, but we didn't choose our diagnosis or prognosis.

Next the title uses the word “duped” : The article’s premise is that medical industry encourages unnecessary surgery to line their pockets. I actually do approach conventional medicine (as I do most things) with a certain degree of skepticism, but I'm just not willing to subscribe to the belief that the entire medical community is driven solely by money. I just can't picture my breast surgeon, who kind of reminds me of Dr. Ruth Westheimer, going home at night to her evil lair, after a long day of conducting delicate surgery, cackling that she ‘duped’ another one while she counts her money.
“Self mutilation” : Really? Really? This is by far the most offensive part of the title and actually confuses the hell out of me. We are talking about mastectomy, the surgery millions of women have undergone in the hands of well trained medical surgeons, to treat cancer TO SAVE THEIR LIVES! Are they all self mutilators? Or only those who do it for prevention reasons? Because you know... it's the exact same surgery?
The article questions why society accepts removal of breast for cancer prevention but does not say testicles or colon. I've actually questioned this myself and thought long and hard about it and here is what I concluded. Women don't actually need breasts. Breasts are like a nice accessory and mine have served me well. I've been fortunate that I've been able to feed two children with them and maybe in some subtle way they helped me attract a mate, but fortunately for me the mate I attracted loves me and supports me unconditionally - not based on my parts.
“Cancer she didn't have” :  Carrying the brca1 genetic mutation means that without a mastectomy, both Angelina and I have an 87% chance of developing breast cancer in our lifetime. The articles suggests that all people are at risk of cancer and that a diet strong in cabbage is the best way to decrease cancer risk. I believe in the power of ‘super-foods’ and all, but consider the following analogy for a  second: Imagine you were told by your car’s manufacturer that there was a mechanical 
problem with your engine and that if you don't have it removed and replaced there is an 87% chance that your car would suffer a mechanical failure and cause an accident. Sure you could argue that all 
cars are at risk for a break down and you could just wear a seatbelt in case of an accident, or maybe try to use premium gas to address your accident risk, but my guess is that most people wouldn't feel comfortable getting in their car if it carried that high a risk. In the same way, I'm not comfortable staying in my body while it carries this level of risk. So leave me the EFF alone.

Monday, February 3, 2014

I'm such a Jew

Regardless of my ideologies, lack of synagogue affiliation, or the fact that my (married) last name ends in a vowel and we have a Christmas tree in our house, it has become very clear to me that I'm such a Jew. Don't get me wrong, there is no shame in my game. I'm proud of my NY/NJ Jewish roots; after all I'm the offspring of two people who met through Larry David (true story: my parents met when Larry, my dad’s high school friend, hit on my mom) which I think is about as cool and Jewy as you can get.
This feeling of extreme Jewishness all started at my initial consultation with the genetic counselor. As I rattled off the extensive list of family members and their cancers, she wrote out my genogram. She then asked me if any of the family members I had just named were Ashkenazi Jews. When I answered, “yes, they all were,” like the Scarlet Letter, she marked a huge red ‘A’ right in the middle of her paper. I've decided the marking could also be an anarchy sign, making it the most punk rock genogram of all time. But yes, I'm so Jewish that I carry a Jewish gene mutation.
Also like any good Jew, I have been feeling extremely guilty lately. I feel guilty that since I’ve shared my story, people feel bad for me or have expressed sympathy toward me, when I don't even have cancer. I feel guilty that I'm choosing surgery when so many people don't even get a choice. I feel guilty that in my last blog post, instead of just celebrating the good news of a negative MRI, I made it a little too woe-is-me. I feel guilty that my diagnosis of a hereditary genetic mutation makes my family feel guilty. And I also feel guilty that there is a 50% chance that I've passed the gene to my two daughters.
But it’s all good. Because mixed in with all this guilt, is a fair share of pride. I'm proud that I come from a family of survivors. I'm proud that I come from a culture strong in intelligence, wit, and perseverance. And I'm proud that I can model for my daughters, that in the future, they too can make a pro-active decision regarding their health. And that, my friends, is something worth raising a glass of Manischewitz to.