FORCE conference in Philly

Last month was a busy month for me with all things breast cancer related-- but for a GOOD reason: travel! My first trip was to Philadelphia to attend the annual FORCE conference. This organization is beyond amazing in their research & support for hereditary breast & ovarian cancer. They're always on the forefront of the latest studies and research. I love how passionate they are about BRCA 1&2 and how much they want to help people (and families) like myself. When I found out they were also partnering with the Basser Institute I knew I had to attend because it'd be amazing stuff. And it was, they did not disappoint!

 

I was fortunate to attend on a full scholarship and I strongly encourage others to do the same in the future! I applied on a whim, not thinking I'd get it, and they covered my entire trip. I was so incredibly thankful for this opportunity! Sidenote: FORCE is also responsible for covering the funds to get my entire family tested for the BRCA2 gene. It is an incredibly expensive genetic test and they made it possible for 4 of my family members to get tested, at no cost of their own. To say that we love FORCE is a huge understatement!

So off to Philly I went, for my first ever trip to the northeast-- talk about a culture shock for this southern girl! I was very lucky to have two amazing roommates to spend my weekend with. One of which is actually a distant cousin of mine because we share the exact same DNA code genetic mutation. Crazy huh? What a small world this BRCA community is! {It definitely helps lessen the "I feel like a freak" mentality that I've lived when since I was diagnosed.}

The speakers/researchers/doctors that FORCE had lined up to present at the conference made me completely star-struck. If you would've told me five years ago that at the age of 31 I'd be excited to go learn about ovarian cancer detection, I'd have said you were crazy. But these are people that are world-renowned in their subject matter and have done such great things for this community. Several of them are doctors that I've been stalking for the last few years for advice on my specific case.

The most inspirational doctors there were Dr. Domchek of the Basser Institute, Dr. Kauff from MSK, and Dr. Ann Partridge from Harvard. All of these doctors I'd spoken to prior to the conference and I was so anxious to touch base with them again. Their presentations were simply amazing and left me in tears as I was so overwhelmed by their amazing knowledge and support for cases like my own. It gave me hope for my future, hope for my family's future, and comfort knowing that they are outstanding medical personnel out there fighting for us. Plus I decided if I could move to Boston and have Dr. Patridge as my doctor {& best friend!} I totally would! I was simply in awe of their determination to fight for the hereditary breast and ovarian cancer community.

I left the conference feeling so grateful; just thankful for the opportunity to hear these people present, to learn about the amazing work that FORCE continues to do, and blessed to even still be here to take in this experience. Thank you, FORCE!

 *Next up: an even better trip to Chicago!!

the biggest decision of my life

“Dear God, please bring us a healthy baby girl”

That’s the prayer my sweet little girl has been praying every night, for the past year. She is so set on having a baby sister that she has developed into such a strong prayer warrior during this process. However, just last week her prayer turned into this:

‘DEAR GOD, PLEASE BRING US A HEALTHY BABY GIRL!”

When I asked her why in the world she felt the need to yell her prayer, she said “Mommy because we don’t have our baby yet, maybe God can’t hear me”. It was in that moment I knew I needed to teach her about Faith. What a beautiful opportunity it was for me to introduce such a mature topic to such a sweet little heart.

It’s no secret that our journey for another baby has been a tough one. And since I’ve shared every other personal detail about it, I figured I shouldn’t stop now. This is such a taboo subject in the field of medicine (& cancer research) right now, that I am all about spreading the knowledge. There are thousands of other young 20 and 30-something women out there who right now, recently diagnosed with breast cancer, who have not yet started their family, or have not yet completed their family. This needs to be discussed! And researched! {If you or someone you know is struggling with this after a cancer diagnosis, please let them know they aren't alone. This is why I share my story.}

The truth is, there is no standard protocol for a situation like mine. Doctors are unsure what to tell patients like me because young women aren’t supposed to get breast cancer. (But we do) The problem with young women wanting to get pregnant after having breast cancer is that most breast cancer is fueled by estrogen—a hormone that reaches very high levels during pregnancy. Even after someone’s breast cancer is “cured”, it still has a chance of returning later in life. Survivors typically take very careful steps to try and prevent recurrence.

One of the most common ways of long-term treatment is a drug called Tamoxifen. It blocks estrogen from binding to cancer cells and growing a tumor. I, like most patients, was instructed to take this medication daily for the next 5 years. But some women who choose to attempt pregnancy are allowed to stop the medication at 2 years, then resume it after a potential pregnancy. I am extremely fortunate to be in the small percentage of breast cancer survivors who fall into this category because my cancer was caught very early. So I have spent the last 2 years fervently researching this, although it is still a very scarce subject. I’ve reached out to doctors at Harvard, Johns Hopkins, Memorial Sloan Kettering and other prestigious institutions. Every single doctor I’ve spoken to has given me the green light to proceed. However I should also add that this decision is not right for everyone. It is extremely personal and a lot of thought and prayer has been put into this process.

I’ve felt the nudge of God all along the way, giving me grace & strength to keep this fire burning in my heart. I made a promise to myself that the first doctor to tell me "no" would be my sign to close the door on this endeavor. But that never happened. I’ve prayed that God would show me the way and that His will be done. He has led me to this point, and I am ready. I’m ready to take the next beautiful step in this otherwise messy journey. 

 "Faith is confidence in what we hope for and assurance about what we do not see"

Hebrews 11:1

So I am officially done taking the Tamoxifen for the time being. It is a very exciting, yet also very scary milestone. The bottom line, medically, is that I am taking a huge risk in doing this. However, because there is no medical data on this subject, no one knows exactly what the risk is. I am literally talking a blind leap of faith and walking into uncharted waters. My cancer could come back due to a pregnancy, or simply from being off the Tamoxifen. And because I had a mastectomy and have no breast tissue, the cancer would then come back in the bones, as stage 4. And there is no cure for stage 4. As morbid & scary as that sounds, these are the odds I’ve had to weigh while making this decision. There is also a very real possibility that I cannot get pregnant and all of this will be for nothing. I've prayed to prepare my heart to be able to accept that as an outcome too.

But that is where faith steps in; God has never left my side during this entire journey. I’ve felt so empowered and supported this entire time. Sure I have doubts, but mainly I feel excited. I’m so ready to move into this next chapter with confidence, regardless of how great the unknowns are. It’s been a hard lesson to learn, but I think God has truly been teaching me patience during the last few years. (Says the most impatient person in the world). He’s been testing me in ways I never knew I could be tested and I think it’s taught me a lot about myself and my faith. My head is so full of knowledge and my heart full of faith. Whatever happens is God’s will for my life, and I can’t wait to for this next chapter to play out, whatever it may be. I know God has something great in store for our family.
 

It's not about me

Last month was Breast Cancer Awareness month, and it completely skirted by in the blink of an eye! {This whole working-mommy thing is tough.}

The month did not fly by without some awesome, note-worthy happenings. My school's cross-country team put together a Race for the Cure team in my honor. I was shocked that during a school-wide ceremony the entire school- students, faculty, staff, and parents- wore pink in for me. I've always been moved to see people wear pink, or the pink ribbon, in honor of breast cancer. But to have an entire school do it just for YOU is extremely overwhelming & humbling. I was honored to briefly speak in front of the school and share my survivor story.

The next week I received a very unexpected phone call. "Hi Anne? This is Ellen Degeneres Show and we've selected you to be our Survivor Of the Week". What?! I was in complete shock for the next hour! When I submitted my story a few weeks prior, I definitely did not expect to be picked. The fact that they took the time to read my story and chose to highlight my journey was just so exciting. {I was secretly waiting for them to say they'd fly me to LA for the show, but no such luck!} It felt so surreal that my story was being shared to millions in Ellen's fan base. Wow. Just wow.

As exciting as these events were,  it was several other happenings that were far more important. Two friends went in for a mammogram because of a concern and after hearing my story, they wanted it checked out. I was put in touch with three random strangers, young women, who were newly diagnosed and lost & scared. I was connected with another young survivor who told me "I think that you are my soul mate!" after we poured our hearts out to each other about our very painful struggles. These women are why I share my story. This is what this awful disease is about; not pain, loss, hurt. It is about touching other peoples' lives and reaching out to those in need, it is not about me. I am merely the messenger for Jesus, helping other women along the way and ministering to their hearts to help them through their journey. And I am blessed and honored to do it.

"Always be humble and gentle. Patiently put up with each other and love each other" 

Ephesians 4:2

What's new?!

Wow I can't believe it's been 3 long (..or short?!) months since my last post. It was completely unintentional and life just got busy! The summer was beautiful & wonderful and I'm sad to see it go. But with the end of summer comes another new chapter in our lives-- I have gone back to work!

a girls' trip to Oceanside, CA

Remember how funny God is when we think we have our life all planned out? Yeah, He likes to laugh at us. I thought I had my life all planned out: we'd have two (or three!) kiddos and I'd stay home with them until the last one went to school full time. Then I'd return to work. Well considering I don't have a babe at home right now, and my daughter is now in Pre-K five days a week, I'm left a little empty. Sure it's nice to have alone time; I love all the "me time" I can get! But the reality is all that alone time isn't good for my soul. Staying at home thinking about not having a baby right now is just not what's best for my heart. I decided that I need to be out, doing something, being productive with my time.

 

 first day of school

Enter my daughter's amazing school. We made the careful decision to send her to this outstanding private school for many, many reasons. And now I'm honored to be able to say that I teach there! It has been such a blessing to me to be in a positive environment, around wonderful people, starting a new chapter. I could go on and on about how blessed I feel to have this opportunity in my life right now. I never knew how badly I needed this change until it happened. God is still sneakily working in my life when I least expect it, I see it all the time!

my BRCA story

With all the whirlwind media lately surrounding Angelina Jolie's decision for a bilateral mastectomy I thought I'd share a lil bit about being BRCA positive. It's been over a year-and-a-half since I found out I was BRCA2 positive and I realized I haven't talked much about it on my blog.

For the record, no one in my family, immediate or extended, has ever had breast cancer or any type of cancer for that matter. This was the main reason no one suspected that my lump was actually cancer. Once I was in fact diagnosed, at the age of 28, the first test they ran was the BRCA test. Less than 20% of breast cancers are genetically linked to the BRCA mutation, but typically when a young woman is diagnosed it's often because of BRCA. I remember my oncologist saying to me "If you come back positive, I'm betting it'll be BRCA2". Sure enough, I was.

Everyone is born with the BRCA gene in their genetic makeup. Less than 1% of the population has a mutation on the BRCA1 or BRCA2 (yay me, awesome odds!). This mutation causes a malfunction in tumor suppression, thus allowing tumors - mainly in the breast & ovaries - to grow. I had no reason to think that I had this mutation until I was diagnosed. Many young women are now proactively being tested because of a family member having cancer, and they are opting for preventative surgeries. I've found an awesome group of women, called Young Previvors, who provide an excellent source of support for BRCA+ young people.

I've been humbled to have several friends come forward and talk to me about their family cancer history and get tested for the BRCA gene themselves. I cannot even tell you how happy this makes me that they're taking their health into their own hands. It is so important to know your family history and make wise choices regarding your future health.

There is a process called PGD where you can elective to have your embryos screened for a variety of genetic diseases and mutations. Many people who are BRCA+ choose to have this done so they do not pass on the mutation to their children. While this is an amazing option for many people, we feel like this is not something we will do for any future children we may be blessed with. Our daughter may or may not have this mutation, we won't know until she's 18, but she did not get a choice in her genetic makeup. To us it would not be fair to genetically screen any other children we may have-- they all deserve the same chance at life. When I brought this up with our daughter's pediatrician, his reply was "There's now a vaccine for cervical cancer, I'm sure by the time she's old enough there will be a vaccine against BRCA". I was so relieved; what great optimism to have! When our own daughter does get tested for the mutation, I will fully support any decision she decides to make to prevent herself from getting cancer should she carry the same mutation that I do.

The largest hereditary cancer organization for BRCA+ information/support for YOUNG women is Bright Pink which was started by Lindsay Avner, 22yr old woman who elected for a preventative mastectomy. It is such an amazing organization and I love all of the awesome information and support that they offer. There is also another national group called FORCE who offer valuable resources and research about BRCA. They are actually helping members of my own immediate family to get testing. They've also recently partnered with the Basser Institute, the first and only research center for the BRCA mutation. I've spoken to the director of the Basser Institute for advice on my own diagnosis and they are truly doing awesome ground-breaking work there.

So the bottom line is know your family's history, and if you don't know, ask! And if I can answer any question for you too, please ask me! I'd love to help in any way I can.

the best gift ever

Are you ready for this? Are you ready to read about the most amazing act of God's grace? Because I'm lucky enough to be living it right now.

If you've been a reader of my blog for a while now you know I've always said that I feel like I've gone through this process because I was meant to pay it forward and help others. I've had several awesome opportunities to counsel other young women who were diagnosed and it's warmed my heart to be able to lend a helping hand or a smiling face to someone who is struggling with a scary diagnosis. To me, this was God's sign that He was using me as His servant. I had never felt so blessed ... until this past week. Something happened that topped all of this.

A week ago I joined a Facebook group for adoptive mothers-- women who have adopted and are looking to adopt. Since we are exploring all of our adoption to expand our family, I decided "why not?" and joined the group. I introduced myself and shared my diagnosis/story & also my blog. Well a few days passed and a woman from the group contacted me saying she had an adoption opportunity for me. She said that a baby boy was due May 7 and wanted to know if I wanted the baby. I wish someone could've taken a picture of my face at that moment because it was pure shock. Was this a sign from God? Was this child meant to be our baby? A million thoughts were running rampant through my brain.  After talking to my husband, we decided that we're just not emotionally (or legally) ready for this so soon. It's less than a month away and it was just too soon for us. We'd barely scratched the surface of just discussing adoption and here we were with the possibility of bringing a baby home. Things got very real very fast!

So unfortunately we decided to decline the adoption offer, but we graciously passed it off to some dear friends of ours. They have been trying to have a baby for 5 years now with no success. They recently made the decision to adopt and started the legal process. Basically they were one of many couples out there "waiting on that call". We immediately thought of them and called them to offer this up to them. After they agreed, we hung up and hoped & prayed for the best. I was so torn about whether or not we'd just snubbed God. Did we just turn down His one and only offer for a baby for us?! My awesome husband reminded me "Anne, God uses people as His servants everyday. Maybe we are being use to give them their baby that they've been waiting for". That's when it hit me. We were the means that made it possible for them to become parents. Once my friend called me back to confirm me that they were indeed proceeding with the process, I broke down bawling. God truly did use my painful, ugly, horrible struggle to produce something beautiful for our friends. We never know what He's working on, or how His will is going to work out, but He is always faithful and never forgets about us or our wants. We are so excited for our friends and their brand new baby boy!

"Give thanks in all circumstances; for this is God’s will for you in Christ Jesus."  

1 Thessalonians 5:18

survivorship: 1 year!

You know, I've never asked my doctor what he measures survivorship by. Is it when the cancer was physically removed from my body during my mastectomy? Or when I finished chemo exactly one year ago? I like to go by when I was completely FINISHED with all things treatment related. So I'm basing my survivorship on when I finished chemo a year ago.

So what has happened in the past year? A lot of soul searching. A lot of re-building. A lot of praying. A lot of helping others. I have dedicated myself to reaching out to other young women who have been diagnosed. I've made it my mission to make sure they know they are not alone, and that they will be JUST FINE. To me, that is the most important part of my life now: God using me as a faithful servant to serve others in need. During my treatment I witnessed the love of Jesus in real-life through the women that helped me through. So it is my honor to do the same for other women now.

Living life as a survivor is a delicate and confusing journey. There are so many things that should be "normal" again that unfortunately are not. Learning to step outside my comfort zone and work on my insecurities has been a huge challenge. But with the love & support of friends, and through much prayer, I've successfully gotten to this point by the gift of troubled grace.

Along with a lot of spiritual growth has come the exciting growth of my hair. Guess who has a cute, new (& normal) haircut now?! I could not be any happier with my new 'do!  

"Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”

  Deuteronomy 31:6