5 years!

I wasn’t going to write a post this year - it seems the farther removed I get from my surgery the less I connect to being “someone who had a double mastectomy” (this is a good thing, it speaks to how normal life is after this surgery). But then, someone commented on one of my blog posts yesterday. That was the first comment I had gotten on an actual blog post in a while, months, maybe over a year now? And to get it on my five year anniversary of my surgery, made me pause for a minute.

I still get a whole bunch of interaction and private messages through my instagram posts, but to know that people out there are still reading my blog today really hit me. It reminded me why I wrote this blog — not just for me, but for the girl who just got her BRCA test results, or the one who has known about her positive results for two years but can’t quite pull the trigger on a surgery decision, or maybe the one who is terrified to get the genetic testing done, or the best friend or sister of someone who is about to go through surgery… so, I’ll write…

When I got my BRCA 1 positive results on my 30th birthday I was beyond overwhelmed. Informed? Yes. Completely overwhelmed? Also yes. It is such powerful information to have - but like everything in life, with power comes struggle, pressure, and stress. I desperately wanted a crystal ball to show me what life would look like depending on which decision that I made. I wanted someone to tell me “you need to get a preventative double mastectomy by X age to prevent cancer, and once you do that your life will look like this”. I wanted someone to say to me “you need to get your ovaries removed by X age, and once you do that your life will look like this”. The crystal ball doesn’t exist, but lucky for you, I do :)

I had my preventative double mastectomy at 32 - two years following my test results. I was in a happy and healthy relationship with someone that I saw a future with. I felt confident in the research I had done, and I was tired of living in fear of a cancer diagnosis. Today - I am 37, married to that sweet guy, raising the squishiest most perfect (formula fed) 18 month old, and expecting baby number two. I have frozen eggs (this was unpleasant but manageable, and I hate needles), and pay a monthly storage fee of about $100 to keep those on ice. I have not had to have any revisions on my breast surgery, although there was a fairly recent recall on the implants that were used during my reconstruction, so I am considering replacing them. The ones that I have can cause lymphoma — how ironic. A recent diagnosis of ovarian cancer in my family has reignited my plans to have my ovaries removed. Originally it was only the increased numbers in my chances for breast cancer that really kept me up at night, but now I have the fear of ovarian cancer knocking, very loudly, on my door.

Is surgery for everyone? No. But it was for me. I have never regretted my decision to have preventative surgery, and reconstruction, and feel very grateful that I had the power to be able to make it. My next steps, after I have baby #2 this summer, will involve me removing my ovaries. Maybe I will do just my tubes first, and have another baby by using my frozen eggs and IVF. Maybe we’ll try for a third (or fourth or fifth, if my lunatic husband has his way) before I have anything removed. Maybe our second kid will be a lunatic and we’ll be content with what we’ve got, and I’ll schedule my ovary removal ASAP. We will see. These things are still being sorted out, and something I weigh the options of every day. I talk to my doctor regularly about the choices that I have, and I thank my lucky stars that I have them.

I’m not as magical as a crystal ball, but maybe I’m a few steps ahead of you on your journey, and could be someone to talk to… I’ve lived a bunch of it already, and I’m happy to give any insight or input that I can to help you navigate your way through the BRCA fog.

I’m always here to talk or listen or text or call or email or DM or share pictures or whatever it is that might help you or someone that you know! Just reach out …

xxo

3 years later

Three years. Three years ago I had the balls to get a preventative double mastectomy. It’s funny what they say about hindsight - it being 20/20 and all… Things that seemed so complicated, are now so clear. Worries that kept me up at night -  a distant thought. I have found that sometimes we have to make a decision, but other times, it’s best to let the universe take the lead.

Three years ago my doctors would not tell me to have a preventative double mastectomy, they would only rattle off the statistics, and tell me that it was “one of my options”. I wanted desperately for a doctor to tell me, “Get the surgery. Do it on this day. There are no other options.” I am admittedly not a decision maker, I like to go with the flow and let things happen as they will. This decision making pained me. I know now, I made the right decision.

I worried for god knows how may sleepless nights about so many things that today, seem insignificant and almost silly in comparison to the alternative. The alternative is that I could have gotten cancer by now. I could be dead. I could be alive, and infertile.

I’d worry whether or not the man I was with would find me attractive after having my boobs removed. Today, he assures me every day that he does. I worried that I wouldn’t be strong enough to face the aftermath of surgery, the pain, the mental battle. Today, I am stronger than I ever would have been if I hadn’t had my surgery. I worried that my family and friends wouldn't support my decision. Today, I am reminded constantly that they had, and will always have my back. I worried that I wouldn’t like the way I looked, or feel comfortable in my own skin again. Today, I am happy with my results, and my boobs are perky without a bra, forever :) I worried SO MUCH that I was doing my future babies a disservice by not having the option to breastfeed. Today, I am pregnant, I am growing a little baby inside of me and I realize that breast feeding is just a tiny piece of the huge puzzle that will go into making them a thriving, happy human. 

Today, three years later, I am happy, I am married to the man of my dreams, I am living in a home that he built for us to start a family in - and I am doing just that, starting our family. I wish that someone could have told me then, what I know now. I wish that someone could have shown me that crystal ball and said, it isn't just going to be okay, its going to be great. 

I know how stressful the discovery of your BRCA mutation can be. I was there, three and a half years ago. I am more than happy to be there for you if you need someone to talk to. It’s complicated, it’s overwhelming, its sad, its not fair. I have been there. Please reach out if you’re looking for someone to chat with.