Finding my "pink"

When I was diagnosed with the BRCA 1 genetic mutation that elevates me to a "high risk" individual for breast and ovarian cancer--and then had a risk-reducing double mastectomy-- I sort of felt like I was on an island of my own. I had tons of support from friends and family and I wasn't the only person in my family with the gene mutation. Where it got weird was how did I fit in to the "pink" community? Did I fit into the cancer community?

I hated the word label: previvor.  It just seemed weird and awkward. The bottom line was I choosing to proactively handle my cancer risk based on amazing advances in technology and research. I didn't have breast cancer. I don't know what it is like to receive the results of an abnormal biopsy, or tackle rounds of chemo and radiation. I don't know the intense emotional and physical pain that cancer patients face. So-- I felt alone. The likelihood that I would be diagnosed with breast cancer in my lifetime was 87%. The likelihood that I would be diagnosed with ovarian cancer (the deadliest gynecologic disease) was elevated to 54%. The numbers are just scary and they are REAL!

I received amazing care at MD Anderson and I was surrounded by many women who were really fighting a battle for life. I felt guilty for having access to testing that allows me to make big decisions to travel down a different road then the one my genes had in store for me.

Those amazing women deserved to wear the pink. My grandma, my aunts, and several 2nd cousins who fought the fight deserve to be "pink ladies"... not me.

This weekend I discovered my shade of pink. This weekend I found the community I belonged in and a way that I can share my journey to save women's lives. I found Bright Pink!

For the next 24 months I am on a mission to reach 50 women per month and present the "Brighten Up" Workshop, a dynamic presentation that teaches breast and ovarian health basics, early detection strategies, risk reduction strategies, and then give participants real tools and resources to assess their risk and make proactive decisions. I am on a mission to save young women's lives in my community!

Join me on this journey! Help me reach the women that are important to you. This free 20-minute workshop was created by a group of medical professionals but designed to be delivered my women like me. It can be presented to social groups, church orgs, businesses, community orgs, etc completely free of charge! If you know of a local group who would be interested in this workshop please reach out to me by email at ericajohnston23@gmail.com.

I want to help all women become BRIGHT PINK!

2 Years and more to come!

So I almost let it come and pass without mentioning it.... honestly I kept remembering and forgetting about it all week! MD Anderson actually reminded me because I am part of a research study and my survey was due this week for my "Two Year Follow-Up".

June 5, 2012 I had a double mastectomy and two years later I still say that it was THE best decision I could have made (See this previous post to catch up on the story). Nothing is easy and nothing drastic, like surgery, comes without some changes but to live free from worry about developing breast cancer at some point makes it all worth it! I couldn't live thinking that I was going to be in the 20% of women with my gene that don't develop breast cancer. We don't do Vegas vacations and you can probably see why.... I am not a gambler!

So... what's next you ask? Well, I'm not out of the woods just yet. Part of being BRCA-1 positive is also having an increase risk of ovarian cancer which is actually the more scary of the two cancers. Ovarian cancer is hard to detect early. And here is a disturbing fact: Ovarian cancer accounts for about 3% of cancers among women, but it causes more deaths than any other cancer of the female reproductive system. :( My ovaries must be removed but I am too young to put my body through the HUGE, RIDICULOUS changes (menopause) that would cause. It is not even an option on the table until I am 40. So the plan as of just a year ago was to "wait and see" until I was 40.

My appointments with the MD Anderson Ovarian Clinic are twice a year now since turning 30. The goal is to catch anything early. I just had my first appointment with a new high risk doctor who told me briefly about a NEW research study that I qualify for-- and the game might be changing! I am so excited about this I can barely type! If I believed in former lives, I can confidently say that I would probably have been a lab rat because I love participating in these various research studies.

I will find out more in 6 months when I follow up with her and she lays out the whole plan for me to consider, but here is what she told me briefly. There are several studies that have been done that are indicating that ovarian cancer in BRCA gene carriers originates in the fallopian tubes which are the tubes that connect the ovaries to the uterus. They are looking for 30-somethings to opt for a "salpingectomy" (aka fallopian tube removal) which is done through laparoscopy so it is a much less invasive procedure. By taking the fallopian tubes it is thought that I might be able to "hold onto" my ovaries past 40 which is fantastic. Naturally I qualify because I am a gene carrier, I'm 30, and we are 100% done having babies! Needless to say my new doctor was very excited to have me as a new patient. I can't wait to learn more about this whole procedure and I love that the data that they will collect from me over the next decade will help them learn so much more about the BRCA gene and ovarian cancer.

I am so thankful for this journey that the Lord has brought me on. He has equipped me throughout with the strength I needed to get through it all. This day always makes me reflect on the many family members and friends that helped my family as well. If it wasn't for the meals, notes of encouragement, and occasional visits, it would have been much harder. Thank you for blessing my family back then and now!

There is more to come folks so stay tuned.... :)

Our job as parents

Gosh! The job of being a mom or dad is hard right?! Let's just be honest-- the stress of "Am I doing everything I am suppose to do to prepare this child to flourish as an adult?" is enough to make anyone go bananas!

This weekend a tragic and unfortunate event happened which affected my extended family. And right now I have a beautiful, sweet cousin who has had the life sucked out of her beautiful spirit because of this tragic event. She is hurting and will be for a long time. She needs prayer right now but I know she will take this very hard time in her life and use it to help so many one day.  I am very far removed from the situation so I am not speculating whether this could have been prevented or not. It is not my place to do that and I'm not sure we will ever know the answer on this side of Heaven.

What it did make me think about was as my kids grow into tweens and teens one day how can I help them lead a healthy life where ideas like suicide don't even cross their minds? It brought me to a powerful Facebook status update I read years ago from one of my favorite bloggers, Jon Acuff. It said something to this effect-- "I want to fill my daughters up with so much love that when the world knocks them over they will not empty." Good stuff, right?  So I just need to love them until I can't love them any more and they will be fine, right?  I think that's what we read from that quote on the surface but in reality that isn't the answer :/

It hit me, as I have heard time and time again, that I need to make sure that my kids know how much their HEAVENLY FATHER loves them. So why isn't my love enough? Because God chose an imperfect mommy and daddy to raise Emma and Mason... plain and simple! We will mess up, we already have but we still have a lot more messing up to do. So they must know that even when their mommy and daddy mess up-- yell and scream too much, lose patience, say words we don't mean to say, break promises-- they will fall back in the arms of an amazing God who will never let them down. Ever.

Depression in teens is real and the world is constantly telling them they aren't good enough. And then you add on the natural shortcomings of earthly parents and who do our kids have to turn to? The answer to that is rhetorical so I won't even go there... Instead we must teach them to lean on God, turn to Him in times of uncertainty, and most importantly communicate with Him through prayer.  We have to make God REAL for our kids so they will turn to Him. The more they see us love this "God" that as children they can't see the more they will love God. They must know that He IS the ultimate provider-- I mean He blessed Mom and/or Dad with a fabulous job, didn't He?

Life isn't a simple formula and even the parent who tries their hardest and loves them some Jesus can still produce a child who will stray and make bad choices.  That's one of those questions to ask Him when we reach those pearly gates one day. What I do know is prayer is powerful and we are in this parenting thing together so let's pray for each other, build each other up, help each other, and most importantly shine the love of Jesus to those sweet babies that He has trusted us to raise!