Glory be to God

 Jesus said to her “Take heart, daughter; your faith has made you well.”

-Matthew 9:22

The sermon at church today was about keeping the faith and giving all the glory to God when His faithful promises are made good. It reminded me that I needed to update my little corner of the blogosphere about my journey of faith!

Our precious miracle, Stella Grace, was born March 20 weighing 7lbs 1oz and with a full head of strawberry blonde hair, she came into this world screaming wildly on fire. 

My pregnancy was nothing short of amazing and I felt absolutely great the entire time. I was able to workout up until the day I delivered her and I am so thankful for all the hard work my body did to prepare and grow her. After all the negative things my body has been through in the last few years, and all the time I spent cursing it for failing me repeatedly, I am grateful that it was finally able to function "normally".

However, at my 20 week anatomy ultrasound, it was found that Stella had several choroid plexus cysts on her brain. Although my doctor tried to assure me that it was probably not a sign of anything ominous, it landed us an emergent trip to the maternal fetal medicine specialist. After a more thorough ultrasound and a DNA blood test, they were deemed harmless and she was free of a speculated Trisonomy 18 diagnosis.  I was still closely monitored throughout the remainder of my pregnancy to watch the cysts and guarantee that they disappeared. What a relief it was to see them shrink each ultrasound until they were completely gone! 

While I was in labor on the day Stella was born, her heart rate started showing drastic decelerations on the monitor. The nurses could tell that this was due to a "cord issue", but that's all they said. They did a great job keeping their composure and assuring me everything would be ok. But when my doctor came in to check me, he went into frantic panic mode and said she needed to get out FAST. It felt like only about 5 minutes had passed and Stella was out. Not only did she have the cord wrapped around her neck, she also had a true knot in her cord. But she was completely fine. I was induced early, before my due date to control my bleeding issue. The day after Stella was born, my doctor admitted to me that had I gone all the way until my due date, she had a drastically increased chance of being stillborn due to the knot in her cord. Needless to say, in that moment, it was clear that this little girl was meant to be here on this earth with us for a purpose. Here she was, only 1 day old, and yet her list of God's faithful actions toward her arrival was already a mile long. 

Stella is 3 months old now and we are finally coming out of the "newborn fog". {Some people are blessed with perfect, non crying, always sleeping newborns. I was not one of those people!} Stella was an extremely difficult baby for many months. Her colic and reflux issues plus to her refusal to sleep made it very hard to praise God for this precious miracle He so graciously gifted us with. Somewhere amongst all the crying and sleep deprivation, I realized that nothing about "getting" Stella had been easy...the wait, the uncertainty, the fertility issues, her delivery, and now this cranky newborn phase. But you know what? All of those struggles made her worth it, SO worth it. 

 

God never promised it would be easy, He only promised that He would always be faithful. And faithful He has been. All the glory be to God!

They don't work ... like, at all

At some point in our society, it has become the "norm" to rudely question (& subsequently judge) new mothers about how they choose to feed their babies. We all know breast is best. But for whatever reason, i.e. nursing problems, babies with medical issues, mothers going back to work-- if/when a mom decides not to breastfeed, she frequently feels shamed & scorned by moms everywhere.

This issue became even more disturbing to me after reading this article from a young mother & breast cancer survivor. Now that I am pregnant and will be in her shoes very soon with a newborn, unable to breastfeed, I am completely dreading the stares, questions and ridicules from unknowing strangers. Namely, starting in the hospital when "well-meaning" healthcare professionals seem to bombard you about breastfeeding your new baby. I've already been asked, several times by several different people in the healthcare profession, if I'm going to be breastfeeding this baby. I know they probably meant no harm in asking, but it still astounds me how little is known about the subject. So just to clear up any future confusion-- the short answer is I would LOVE nothing more than to be able to nurse my baby, but sadly no, I physically cannot. A double mastectomy leaves a woman with absolutely no breast tissue or milk ducts, and most of the time without nipples. Yes, I look like I physically have breasts, but they are nothing more than shells of skin that hold silicone implants. And for those, I am extremely grateful because I am able to feel and look feminine. But they serve no other purpose, and never will.

I have researched many alternative options about how to best feed my baby, including milk banks & donor milk. I am so thankful that these options exist for women in similar situations like myself. I have also contacted Susan G Komen to see if they have any partnerships with milk banks or formula companies to help young breast cancer survivors like myself feed their babies. So far no such programs exist, but I am excited about the possibility to be able to help further this research and hopefully foster partnerships in the future. I feel like with the (unfortunate & alarming) increase in young women who are diagnosed before they start/complete their families, the more this will soon pose a greater need among survivors.

To be completely honest, I already feel extreme guilt & sadness over not being able to breastfeed this baby. I would love nothing more than to share that nursing bond with her! Additionally, I know those feelings will only be magnified once she is born and my hormones are in full effect; what a tough & delicate time for a new mom! But the reality of the situation is, because of my double mastectomy, I am ALIVE and I am blessed beyond measure. I was able to beat breast cancer to be here today, to even have the chance to get pregnant and bring this precious miracle baby into the world. So before anyone jumps to judgement, just know that my gratefulness far exceeds my worry about how my baby gets fed. My hope is that by sharing my story it will help others to be careful with their questions and judgements. Every momma has a story, and has walked a journey to get there, so let's all remember to be mindful of her feelings!

Pregnant after Breast Cancer

If you only had any idea how many times I have googled those 4 simple words: pregnant after breast cancer. [It would probably be a ridiculously embarrassing amount of google searches over the last three years.] And because most of those searches (until just very recently) yielded almost nothing, it is my biggest hope that by posting this blog today, I can somehow give some optimism to another young girl who is out there desperately googling those words herself. Because the reality is more & more young women are being diagnosed-- many before they've even started a family. And many, like myself, who have not yet completed their family.

I am now VERY blessed to be able to say that I am indeed pregnant after having breast cancer (12.5 weeks to be exact!) It is so exciting to be able to share our news with our family & friends who have so faithfully supported us since day 1 of this tumultuous journey. The past three years have felt like an eternity that has slowly crept by. My patience was at an all-time low many times and there were days when I just wanted to give up and never thought a pregnancy would happen. But I'm here to say that I'm living proof that miracles DO happen and there is indeed a light at the end of every long & dark tunnel.

Just how I got to where I am today is a crazy story filled with lots of uncertain detours. If you're interested in the medical jargon of my journey, keep reading (some may be TMI), if not then just skip to the bottom :) This is for all the cancer survivors who have been told "You can't ever get pregnant" or "You shouldn't ever try to get pregnant because it's not safe". I'm here to tell you that I defied those odds and you can too.

After enduring four rounds of very toxic chemotherapy, I sought out the advice of a reproductive endocrinologist to get an update on the [new] state of my fertility. He checked my AMH level and told me that although a good portion of my egg reserve had been killed off as a result of chemo, I was not in the "infertile" zone just yet. Although waiting the recommended full 5 years on Tamoxifen could exacerbate that by allowing time to naturally age my eggs as well. This is why we opted to stop Tamoxifen after only 2 years. I also had a procedure done called an HSG to check the status of my left fallopian tube that had been damaged during my ectopic pregnancy. Luckily that tube was open, functioning, and free of scar tissue, but I was still at a slight risk for another ectopic pregnancy should an egg come from that side.

And it's no secret that I've also spent the last few years researching and reaching out to experts all across the country. I've traveled to Dallas to meet with new doctors. I've had phone consultations with doctors in New York. I've blindly emailed so many other doctors & experts that I've lost count of who I've talked to and when. I've shared my story with whoever will listen and answer my questions/give me advice. I've scoured medical journals for any and all information regarding pregnancy after breast cancer.  Fortunately, I've come across more & more promising info recently in the last year. Most articles and studies start out with stating this: Historically, pregnancy after breast cancer has been considered potentially detrimental. 
Why? Because estrogen fuels pregnancy, which also coincidentally fuels [most types] of breast cancer. There aren't many studies done on patients who are willing to take the risk to get pregnant. However, lately there has been more focus and research on this area and the news is promising:
...the best available modern evidence suggests that pregnancy after breast cancer does not increase a woman’s risk of recurrence, and in fact may even confer a protective effect.
I literally cried when I read those words. This article was my golden ticket. It was my hope and everything I'd worked for was summed up in this one single publication! I printed out a binder-sized amount of research and humbly presented it to my oncologist. We have not always seen eye-to-eye on everything as I am a feisty lil fireball of a patient that keeps him on his toes. But over the last year he slowly came around to the idea that yes this was safe for me to pursue and yes he would support me.

After I stopped my Tamoxifen a few months ago and blindly walked into the unknown waters of trying to get pregnant, I had a strong feeling that things were going to work out. I'd worked so hard to get to that point and felt like God was by my side rooting me on along the way. However that all came to a crashing halt on July 14 when I discovered that my PCOS had returned. My cycles had been irregular up until then and they further were compounded by other frustrating symptoms. I sat in my OB's office and cried as he shook his head and apologized to me, stating he didn't think there was much he could do for me due to the sensitive nature & circumstances of my case. He then had a consultation with my oncologist to discuss any safe options to help me. The only thing they could agree upon was a laproscopic surgery called ovarian drilling that I'd had once before, and was quite successful to cure my PCOS and I got pregnant (unfortunately with the ectopic).

A week later, July 23, I sat in my oncologist's office, crying yet again, because he told me he was admitting me to the hospital for 3 days due to my rare, yet mild blood condition. He always errs on the side of caution when I have surgery and as a precautionary measure he wanted me to be admitted to be monitored. I left his office feeling even more defeated, wondering why was all this happening to me after I'd come so far? I went home and cried all evening and started to doubt myself, my strength, and if I should even pursue this surgery. Maybe this just wasn't meant to be. What if it didn't even work? What if I went through with the whole thing and still couldn't get pregnant? It was my lowest of lows and I just wanted to give up and be done.  As I fell asleep that night I prayed for God to let me know that I should keep moving forward; I pleaded with Him to give me a sign that He was still there. The surgery was scheduled for July 29 and I wasn't even sure if I wanted to go through with it.

The next morning I woke up and saw the one remaining pregnancy test on my bathroom shelf. It was a glaring reminder of what I had hoped & wished for and I felt like it was just staring me down. For no reason at all, I decided to take it just so I could throw it away and start over again later. I literally had no reason to think it would be positive, no symptoms, nothing. But in a flash, I amazingly saw that magic word pop up: pregnant. Since I had no reason to think I was actually pregnant, I was in complete shock and wasn't sure what to think or do. I called my OB's office who immediately had me come in for bloodwork. By lunchtime they called me back: "Your HCG is 452. You're pregnant!" It turns out I had gotten pregnant right before that ultrasound that showed my PCOS was back. By some miracle I was able to get pregnant just before the PCOS became too severe. I ended up going in for my first ultrasound at 4weeks 4days, to ensure that the pregnancy was not another ectopic. They could tell that unfortunately, it did come through the same left side that I'd had the ectopic pregnancy on. This was a huge worry and we were once again prepared to rush into emergency surgery if need be. Again, by some miracle, the baby was perfectly placed where it needed to be and was growing right along. Two weeks later, at 6 weeks along, we heard its beautiful heartbeat loud & clear.

Now I firmly believe that every child is a miracle from God and that pregnancy is such an amazing wonder. But after all that I've been through, after all that my body has been through, and after all that this sweet baby has been through (in just a short time), I am extremely humbled & blessed to be carrying this precious little miracle! This child will one day get to hear quite the story of how it came to be. But until then we will relish in God's grace and praise Him for how good He has been to us!

If you find yourself up against all odds, just remember that even if your journey is long & difficult, great things can and will come out of it if you keep the Faith :) 

Our Pregnancy Announcement

Fab-U-Wish'd in Chicago

Ever since I was diagnosed I've been inspired by the work that Bright Pink has done, and continues to do. They provide support & education to young women who are at high risk for breast & ovarian cancer. I think they have such a wonderful mission for a special demographic of women who are in definite need of support. One of their main programs, Pink Pal, matches mentors with newly diagnosed (or newly genetically informed) women who are in need of friendship, support and counseling. I volunteered to be a Pink Pal and when I was matched with my first girl last October, I knew instantly we'd be life-long friends.

I called Brianna on the phone for the first time to introduce myself and share our stories. We ended up talking for over 2 hours; laughing, crying and everything in between. Our stories of being diagnosed and family situations were so similar and we just meshed instantly. Brianna just recently finished her treatment journey and is now doing beautifully! But during that time, her loving & thoughtful husband contacted Bright Pink to grant her a Fab-U-Wish, which is sponsored by the amazing Giuliana. He felt like he wanted Brianna and I to meet in person so that we could enjoy a weekend together and have quality girl time. Bright Pink was amazing in setting up my trip (and the entire surprise!).

When I say they don't mess around with their Fab-U-Wishes, I'm serious! I was blown away at the planning that went into our special weekend. They put me up in the Four Seasons Chicago with a breath-taking view of Lake Michigan. 

I surprised Brianna for brunch at the Ralph Lauren restaurant in downtown. She was completely shocked to see me and had no idea that her awesome husband had planned any of this! Surprising her was by far the best part of the weekend; especially when she exclaimed "Wait, did we just get Fab-U-Wish'd?!?!" We enjoyed a fabulous meal with bottomless mimosas and then headed back to the Four Seasons for an unbelievable spa day. 

 

That evening we had a wonderful dinner downtown, but we also surprised Brianna by inviting a few of her closest girlfriends. I had such a great time getting to know them and they were so welcoming & kind to me. Needless to say, Brianna has some pretty amazing people in her life :) 

 

It was a fast & furious whirlwind weekend but it was so amazing and I'll never forget it. I feel so blessed to have Brianna in my life and I can't wait for our next get-together as survivor sisters! Thank you Bright Pink (& Giuliana!) for making all of this happen!!

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