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! 

Hard to Believe It Has Been a YEAR!

Last Thursday I had my one year follow up with my high-risk cancer doctor at MD Anderson. It was such a stress free visit with many worries now laid to rest since my surgeries. It was an interesting appointment in that while I was sitting and waiting to be seen I was able to reflect upon the last year and the last time that I visited with her. I CAN'T BELIEVE IT HAS BEEN A YEAR!

I am one of those personalities where once an event has passed (especially a major event) I have trouble remembering what life was like before the event.  For instance, I really have a hard time remembering life before my kids. To be honest I have a hard time remembering parts of last week so maybe I just have a bad memory :) But I know moms will relate that have had friends that said, "Just give it 6 months and you will forget the pain of child birth and want to have another one..." And it is true-- time goes by and you forget. So, I have a hard time remembering what life was like before I was physically "altered"! Work with me here on the cryptic speak because I am trying to make everyone comfortable as they read this :)  I am mean you would think having lived a certain way for 28 years that I would remember vividly and almost lament about life before surgery.  It is such a God thing in my opinion!  I thank God everyday that He has erased those memories and made me very content with the way everything has turned out.  Would I do it again? ABSOLUTELY!

The appointment was very positive and very quick!  She still did a "breast exam" and encouraged me to do the same thing as if I was natural because remember I still have that tiny little 1% floating around out there. But generally our conversation was very short and sweet and she was so happy that I was doing so well.

After my appointment I reported for one of the research studies that I am a part of at MD Anderson. That is one of the coolest parts of being treated at MD Anderson is that it is a research hospital.  I believe I am enrolled in 4 or 5 research studies currently.  Some are simple surveys taken online and some are blood draws, but this one was pictures.  I am in a study for the plastic surgery side of things to develop a program where patients undergoing mastectomies and reconstruction can view their bodies at the different stages of the reconstructive journey. The doctors want to be able to upload the patient's photo and walk them through what changes their body will go through and how they might look post-surgery.  I was so excited to be a part of this program and I can see the real value that it can have especially as more women are electing to have this surgery done after genetic testing reveals the BRCA gene.  Snap away I told them :)

Of course, I can't reflect on a year post-surgery without saying THANK YOU once again to the many friends and family that helped along this journey. Thank you for the meals, childcare help, emails, facebook posts, smiles, hugs, and visits!  It was all so helpful and my family felt very blessed by your love. I have the best friends and family in the whole world :)

Leadership is Influence

"Leadership is influence" - John Maxwell

On Sunday we took all of our graduating high school seniors and upper management out for a celebratory dinner.  This has become a 4 year tradition and we always look forward to it.  Every year has been special in its own way-- just different! This year was our biggest group by far. We had 17 graduating seniors and surprisingly 15 of them were able to attend the dinner.  So reservations for 20 were made :)

We recognize that "dinner with the boss" can seem lame and maybe even uncomfortable so we try to make this a "nice, laid back, get to know you" type dinner. We chatted among our little groups, they announced their school accomplishments, colleges they will be attending, etc.  It was so neat to learn about our very accomplished employees. 

Towards the end of dinner a few employees wanted to make speeches. This was a new twist to what has occurred at previous dinners.  Honestly we were a little nervous about what they might say-- did they like working for us? Are they so glad to be leaving? You just never know what a 17 year old might say! By the end of the few speeches there was hardly a dry eye and if you weren't crying you wanted to! It was one of those situations where I had to sit back and really think about what was occurring.  The girls who stood up and made speeches were letting it be known how much they felt like a family, how much they enjoyed their first job experience, and how much they enjoyed working with many of our managers.  That's when it hit me that this is what INFLUENCE looks like! Leadership is influence.

They were not saying that Duane and Erica taught me this and Duane and Erica taught me that-- although we did do some of that. They were talking about what our managers had sowed into them. We taught our managers and our managers taught them.  We influenced and "grew" our managers and gave them the platform and opportunity to help their peers.  One particular manager that many of them complimented is only 20 years old.  She has made a huge impact in so many young girls lives and she is still so young!  Imagine how many she will influence by the time she graduates from college! 

I don't mean to break my arm to patting ourselves on the back but it felt awesome to know that we have created a culture within our little restaurant where our leadership is influencing and being empowered to make others better.  It felt great to know that for those employees that are leaving for college and moving on feel that being a part of our Chick-fil-A family has been a valuable experience and they will take the skills they learned and go concur the world! 

It makes all the long hours, stress, and worry SO worth it! 

I love our jobs!

Finding Comfort in a Prayer

I loved this prayer I read today: "Dear Lord, open my eyes to what You are doing in the middle of circumstances that are outside of my plans. Help me to keep my eyes on You and Your power over all things. In Jesus' Name, Amen".

So why do I feel the need to worry or get bummed when things don't go my way or meet my expectations?  I mean my way is the right way... right? Wrong! Why do I find it so hard to leave it all in the hands of the one who created my plan, your plan, and the plans of the whole world?  In the words of my sweet 2-year old, "Silly, silly mommy!"-- He has power over EVERYTHING! Seems so easy to say yet so hard to do sometimes!

I keep zeroing in on the phrase, "... what you are doing in the middle of circumstances..."  That one phrase gives me an incredible amount of peace and a great reminder. God is the one person that we want to be right in the middle of our business! And while everything feels like it is spinning out of control, especially with the holiday season upon us, to know that God is the one who is juggling all the balls in the air brings comfort.

So here's hoping that I can focusing my thoughts upward as Christmas approaches instead of stressfully focus downward at my "to-do" list that will not cause the world to stop spinning if they are not completed :)

Parenting

A very sweet, young, and newly-married friend posted something on Facebook today that made me think about several things.  Her status said, "This will probably offend people, but when did an iPad become the new babysitter?? Seriously irks me..."  I was not at all offended by her post but it did make me realize something about parenting that I have learned over the years-- Parenting is a HUMBLING experience!

Once upon a time I was an idealistic young bride...

(Prior to marriage Duane and I had talked about EVERYTHING in regards to raising our future kids. We talked about public vs private schooling, discipline, parenting styles, discipline, traditions we want/don't want to continue, girls vs boys, importance of God and church, and oh yeah... did I mention discipline!  We had a plan, a focus, we were going to be rockstars at this whole parenting thing! We were avid people watchers and vowed not to make the "same mistakes" that other people make...)

So the story continues and we became parents and things went well until Emma was about 18 months and suddenly developed her own sense of self, independence, and stubbornness!  We would go out to eat and all Duane and I wanted after a long day of child-rearing and work was to discuss our day and have a small "husband/wife" conversation.  We realized that day (and the many that followed) the impossibleness of that statement! I learned very quickly that dinner convo would roll something like this: "Today I... Stop Emma, chew your bread, good girl... um... (regain my thought process)... Today I.... Emma don't grab the drink sweetie, no, no... (look back at Duane) Today I was cleaning out the closet and... (Emma begins to fuss and whine because she is hungry so I begin to dig through the diaper bag for the snacks or a toy and try to finish my sentence) So I was cleaning out the closet and... and... and (at this point Duane is trying to keep Emma from climbing out of her highchair as she says dada, dada, dada and throwing her toys on the floor)... and what was I saying Duane?!?! AAAHHH! Chaos!  

So, what happens next?!?! I am about to chew crud and lots of it because I am about to become what I swore I would never become-- one of "those" parents, one of "those" people-- out comes the smart phone and it is quickly shoved in front of Emma to occupy her in hopes that Duane and I can at least get through one sentence and just scrape the surface of what our respective days looked like-- forget deep, thought-provoking, meaningful conversation!  And it works for about 5 minutes. I mean after all Emma is only 18 months and her 18 month old attention span kicks in and we are back to a dinner circus of keeping her entertained, attempting to connect as a husband and a wife, oh and eat at least a lukewarm meal (ya with me moms)!

So, dinner is just one example. Over my journey as a mom I have said things and done things that I swore I would never do and I have said and done things just like my mom did-- GASP! And more than a dozen times I have been brought to my knees realizing that this whole "parenting" thing is HARD!  I don't have it all figured out and regardless of how much we have talked about parenting and read books about parenting at the end of the day here is some truth: God gave 2 beautiful children to 2 completely imperfect people who He never expected to be perfect parents; however, He calls us to lean on Him in complete humbleness, refrain from judgement, and know we are not in this alone.

Humbleness... all the looks I have given other parents replaying in my head... humbleness... thinking I had even a small part of parenting figured out... humbleness... eating so many of my words and thoughts...

Parenting-- what a humbling experience!