Can we all get along? Why I think even Melissa Etheridge & I should be friends.

I'll start by saying, I originally wrote something about this topic earlier in the week, and I'm glad I held off, calmed down and reflected on the bigger issue to be addressed before posting. When it comes down to it, I was angry. Angry about an article that I got a hold of this week that discusses why there is some backlash for singing superstar Melissa Etheridge and some things she said in a recent interview for AARP Magazine. As we all know, she is one of the most acclaimed musicians of our time, and as some may not know, also a breast cancer survivor. I don't know too much about her or listen to her music, but I do remember in 2013 when she came out making remarks about Angelina Jolie's decision to have a preventative double mastectomy. Her description of Angelina's decision: "I wouldn't call it the brave choice. I actually think it's the most fearful choice you can make when confronting anything with cancer." Clearly she and I have some differing views. But whatever, everyone's entitled to their own opinion. I, of all people, understand that. But she is at it again with her recent comments. In late September, AARP Magazine came out with an article featuring Etheridge and friend and co-breast cancer survivor Sheryl Crow. In this article, Etheridge, who, this is the biggest kicker, is a carrier of the BRCA2 mutation herself, was asked if women should be tested for the genetic mutation. Her response: "I have the BRCA2 mutation, but I don't encourage women to get tested. Genes can be turned on or off. I turned my gene on with my very poor diet."

Now do you see why my anger kicked in? This is ridiculous! Literally no other word to describe it. Completely ridiculous.

So first things first. This is an inaccurate statement, which she is now retracting because of the backlash flooding in from organizations that support high-risk women. Genes 100% cannot be turned on or off. Absolutely, diet, exercise, environment, many factors can affect one's health, but you cannot turn your genetic mutation "off." Giving the idea to a woman, genetically predisposed, that she doesn't need to be concerned with her high-risk if she lives a healthy lifestyle, could be deadly. And personally, it's insulting to me. I consider myself healthy, but I'm also informed, aware and thoughtful of my health, and luckily know that my gene can't be "turned off."

So after I controlled my anger about this ridiculous, very weird statement, the real issue at hand sets in. Is it a survivor/previvor thing? Is it a "I fought a hard fight and you just were scared of the odds" thing? I do think Previvors are getting more publicity these days after people like Angelina Jolie's public decision, but do Previvors deserve to be recognized? Deserve to be praised? I'm biased because I am one, and a proud one at that. It wasn't an easy process and I truly feel like I came out on top. But as negative comments like Etheridge's get attention, do breast cancer fighters and survivors want to recognize the newly proclaimed Previvor? The Angelina Jolie to their Susan G. Komen? I'm not sure. It's probably easier to give positive praise to women, especially young, courageous 25-year-old women like me, for stepping up and being proactive with their health. But is it harder for them to yell out, "Stop with the Previvor, proactive BS!" because we're the lucky ones, the ones able to know about our risk before it turns cancerous, and before we have to become a fighter? I'm not sure either.

As a daughter of someone who lost their life far too soon from the strange and confusing disease of cancer, I would like to say I can understand the selfish anger of "why me" and "why to my family"? And that is absolutely a reason for my proactive surgical measures. I don't want breast cancer survivors to think of me as a cheater, as someone not worthy of any credit. My fight was different and it was one I chose to fight. And for that I say Previvors deserve praise. I, and they, deserve praise for not only choosing to live a healthy and active lifestyle, but to also make decisions, as drastic as they are, to prevent our families from going through the fight as well. We gave up the body part some women even say define them. We chose surgery not because we had to but because we didn't want to have to later on in life. Sure, there's always the chance we never would have gotten sick, but wasn't there also the chance my father would have stayed the healthy cyclist physician, instead of getting terminally ill before he even hit his mid-fifties? Yes. There's always the chance. But for us, we took the chance in our own hands and did what we thought best.

To those who do not understand, I urge you to be sensitive. This personal, life-changing decision wasn't easy and maybe learning about the life of a Previvor can help you see why some decisions require extreme measures. For those of you who are angry, I'm sorry. I'm sorry my extremely personal decision is not what you agree with. I don't agree with a lot of things in life, but in regards to my health and surgical decisions, I will agree to disagree with those who share differing views. And most importantly to those who are fighting or who have fought, even those out there like Melissa Etheridge, you are why I did this and why I want your support. I want the breast cancer community and those mighty strong fighters and survivors to back women like me, back our decision to not allow this horrible disease to interfere with our lives.

What I want the Previvors to remember through this, is that we do not need to be ashamed of the knowledge we choose to have. As I've said before, everyone has comments. You don't have to let them affect you, even if they're from celebrities in nationally published magazines. Remember that in this different fight we're in, we have doctors because we need and trust them for medical expertise, we have activists and organizations that recognize our need for a voice, and trust me that we have and can be our own advocates, because most importantly, we need the support.

Hugs today. Xoxo, Molly

In the Genes: Preparing to meet with a genetic counselor

So maybe you're reading my blog because by default, you have to. You're a friend, family member or random Facebook friend that keeps being inundated with The Molly Effect. BUT, for any of you that may have caught wind of my blog because you can relate, know someone who has battled breast cancer or are at high-risk yourself or know a friend or love one that is, this post is for you. Finding out, or deciding you would like to find out, if you're at high-risk for breast cancer can come to you in multiple ways. What I've found is the most common discovery is from young women whose mother, grandmother, aunt, etc. have had breast or ovarian cancer, and are looking at their family history with a bit of worry. While this is common, it's not the only way you can be faced with your high-risk history. For me, it was my dad getting sick, and specifically that they could not find out why or with what. There was a known family history of breast cancer in my family, but it wasn't openly discussed, or at least not when I was younger. But truth be told, once we mapped out the family tree, there were just too many instances of women on my dad's side of the family that had been faced with breast cancer.

Everyone's situation is unique, and I'm constantly reminding people that the choice is personal. Just because I saw the high-risk in my family and chose to dig deeper with genetic testing, doesn't mean that's right for everyone. And that is 100% OK. As much of a supporter I am for the decision I made, I would never recommend it to someone who wasn't absolutely sure yet.

But if you are sure, and you want to move forward with finding more information about your risk for breast cancer and/or the BRCA genetic mutation, one of the first steps you can take is to meet with a genetic counselor. I'll start by saying my experience was really, really great. I met with an awesome genetic counselor that did a wonderful job of explaining what was a completely unknown thing to me, in a way that made me feel as at ease as possible (when it really could have freaked me out even more).

So below is a list of three things I recommend to consider, think about or take with you to your first meeting with a genetic counselor. And if you're not there yet and just want to talk to someone over the phone, or read more about it online in the comfort of your home, I've included some links and contact info as well. It can be a scary thing to take this step, but I can personally say that knowledge is power, no matter what you do with it. Carpe diem, friends!

1. Your family tree Chances are, you do not have a family tree mapped out on a piece of paper at home listing all the members of your family and the ages that they have had cancer, or at least it's not something you refer to often. But here's the thing, that family history can be some serious ammo in your fight for being proactive with your health. Not only will the genetic counselor want to see this to gauge your risk, it's also a triggering point to begin the conversation with family members. Maybe breast cancer is taboo in your family and a subject rather not discussed. Asking your mom, dad, grandma, grandpa, whomever, to sit down with you and chart out the family members before you who have been diagnosed with cancers (not just breast) can lead to more open conversations about your individual risk and the disease itself. This can help if you decide to take more actionable steps later on.

2. Your personal medical history and ancestry If you personally have been diagnosed with breast, ovarian cancer or another form of cancer, this can help navigate your risk for carrying the BRCA gene, along with the knowledge of what, if any, of your relatives have been diagnosed as well. Aside from past cancer diagnoses, there is also a correlation between the genetic mutation and being of Ashkenazi Jewish ancestry. The genetic counselor will want to know this right away to help assess your risk.

3. A support system! This is totally my personal opinion, but I believe that having some type of support system with you during this process can immensely help overall. Whether that be a mom, dad, sibling, boyfriend/girlfriend or supportive friend, don't feel weird if you want to bring someone with you to the meeting. Sometimes it's hard to take in all the information you're given when you're feeling overwhelmed, and it can be nice to have someone else in the room taking notes or listening with a different perspective, while also being there as a support for you. And hey, if you can't think of anyone you'd be able to take, I volunteer to be your supporter. You can do this!

Resources:

Bright Pink, http://www.brightpink.org/ Education resources, workshops, tools, high-risk networking

Genetic Testing in the Cincinnati Area:

Cincinnati Children's, http://www.cincinnatichildrens.org/service/h/human-genetics/resource-center/ St. Elizabeth, http://www.stelizabeth.com/cancercare/geneticmutationtesting.aspx

Disclaimer: I am obviously not a medical professional, so please, just take my words as suggestions, from personal experience. As always, there are professionals out there that will be a better medical resource, but if I can ever be of any help in your personal journey, I am here to help.