my BRCA story

Okay, it's time to get real. 

**Disclaimer**

The posts labeled "BRCA" will probably have some content that may make some people uncomfortable, especially for men... Sorry about that. The Dude and I discussed sharing this part of our lives and I am prayerfully proceeding in hopes that my story might meet another woman where she is. Whether she has been diagnosed with BRCA 1 like me, or is facing any other storm of life. My story involves breasts and ovaries, so that will be talked about here. But mostly this story is about hope. 

 

This blog has been pretty chipper and lovely. On occasion I post about the nitty-gritty, like yelling at my kids, but mostly I post about crafts and sketches and preschool Sunday school. Whatever brings you here, I would like to take this relationship a step further, deeper, and bring you along on a journey that is just beginning for me, but has been in the making since time began. I won't take you back that far however. How about starting here:

For you formed my inward parts;
you knitted me together in my mother’s womb.
14 I praise you, for I am fearfully and wonderfully made.1
Wonderful are your works;
my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
— Psalm 139:13-16

BRCA1 stands for breast cancer susceptibility gene. It is a genetic mutation found in a handful of women, who face an elevated risk of being diagnosed with breast or ovarian cancer. The average woman faces about a 12% chance of getting these cancers. A woman with BRCA1 faces up to a 75% chance. 

So the story begins with my being knitted together, fashioned in the exact way that my loving Father intended. With a BRCA1 mutation. Although I didn't know that until last month.

My mom was diagnosed with stage four breast cancer at 28. While this is her story to tell, and I may see if she'll share it here, I will give you a few details. Twenty-eight years old, married for 10 years to her high school sweet-heart, two kids, ages 4 and 6, and a lump. Mom found it herself and the months, rather years, that followed looked nothing like she had imagined. Several rounds of chemo and radiation could not tame the cancer waging war on her body, and she was given 6 months to live. Spoiler alert- God found it good to heal her and has sustained her life to this very day, praise Him! 

The family remained reasonably cancer-free for decades, until my mom's older sister couldn't kick a cough and went into the doctor hoping for antibiotics, but leaving with the news that she had ovarian cancer metastasizing in her lungs. This diagnosis came just months after her annual gyn visit. This story is also not mine to tell, yet I will have to share what I know because God found it in his good will to call my sweet aunt home last July after a long, hard-fought battle. 

Meanwhile, God had been growing in me a desire to know him, I came to faith in Christ Jesus as a child, but I am a constant work-in-progress and He has put many patient years into me. The death of my aunt marked a pillar of faith for me as I had never experienced death in my adult years. I grappled with all the normal questions and came out with the same truth that began it all. 

For you formed my inward parts;
you knitted me together in my mother’s womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
— Psalm 139:13-16

All of her days were written in His book. Our lives are not our own. We are a vapor, he is eternal. So this was her story, and it goes on as she sings of love everlasting, reigning on high to her Father, face to face.

These events along with some others, undoubtedly divinely orchestrated, led me to finding out for myself if I carried a genetic mutation. My aunt had tested positive, so we knew it was in the family, but I had not been educated on the matter and I thought that knowing or not knowing wouldn't really make a difference. After all, I wasn't going to do anything drastic...

Shortly after Tiger {my youngest} was born, the OB/GYN who delivered all of the boys retired, so I was left with the task of finding a new one. After much prayer and talking, and talking and praying, the Dude and I came to the weak consensus that we could be done having kids on our own, and if we felt our family was not complete, would pursue our ever growing hope to adopt. {That's another story for another late night}. 

So, with the death of my aunt fresh on my heart, I decided to try out a doctor in town who did not deliver babies, but focused on other issues, such as cancer. 

In November 2014, I filled out all of the customary paperwork and family medical history and waited patiently in the pink room. Doctor came in, shook my hand and opened with, "Let's talk about this family history."

A little taken aback at her abruptness, we sat for almost an hour discussing the ins and outs of genetics and how she couldn't fathom why I had not yet had a baseline mammogram done, as one should have been done 10 years prior to my mom's diagnosis. She said she would highly recommend having the BRCA screening, but my mom would need to go first. 

I was assured that it is important to know if you are a BRCA carrier, because it will drastically alter your care. Preventative treatments and screenings will be open to you as a result that would not be available if you didn't know, and are not readily available to women who do not carry a mutation.

My mom was reluctant, she felt as though her cancer was caused by environmental effects and poor life choices. She didn't want to think that she could have passed something on to her daughter, her grand-daughters... 

Fear like this, fear that cripples, is met best head-on with comforting words. 

For you formed my inward parts;
you knitted me together in my mother’s womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
— Psalm 139:13-16

 

"Mom, you didn't knit me together- God did. And his works are wonderful. And He knew what he was doing. And if we are BRCA positive, it is not by mistake, " I said in a way that daughters say important things to their moms. And she relented. Six weeks later she called me with shaky voice after a visit to her doctor with the news that she was BRCA positive and her cancer was a result of her mutation. 

I assured her that I was so glad to know, that she was not to blame.  No one is to blame. This is part of our story. 

In January 2015 the Dude and I went into see Doctor together and she sat with us for another hour discussing BRCA, its implications, and her recommendations. I was tested that day, and on February 4, 2015 I received my diagnosis. 

BRCA1 positive.

75% risk of getting breast or ovarian cancer.

Recommended treatment: Complete hysterectomy and bilateral mastectomy.

Risk of passing on to my children.

Fearfully and wonderfully made.

 

So that is how we got here, on this BRCA journey, and in the weeks that follow I will write about the options that were laid out before us and how we decided that we would go ahead with the recommended treatment. I will share more waves of grace, and above all I will try to communicate the peace that comes from trusting in a sovereign God.