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Guest Post Series

(Part Two)

The following post is part of a series that details the beginning of my journey becoming a PREVIVOR of hereditary breast and ovarian cancer. I carry a DNA mutation, but I do not believe this was a mistake. I believe that God created me with purpose in each detail of my being. In this, and those that follow in the series, I want to share my experience, and how He used what could have been a devastating situation, into the start of something beautiful, something that changed me forever.

{Read part one here}

story of hope DNA 300x300 Guest Post Series:Im a PREVIVOR | laughing in the face of hereditary cancer.The decision to get tested was a difficult one, and it was a long road for me. I didn’t know much about BRCA at all.  I didn’t know there were two. I didn’t know how much it would cost. I didn’t know where to get tested. I had no clue what I would do if I tested positive. There was only one thing I did know.

I knew I was going to test positive.

My mom had never been tested, but we knew she was positive from the nature of her illness and her family history.  There’s almost no way she was negative, with the kind of cancer she did, so young, in a family of BRCA2 positive women.  She passed away around the time the BRACAnalysis test became available, and I don’t know if her doctors never suggested it {if so, shame on them} or it wasn’t available by the time she passed, but she wasn’t tested to know for sure.  But, her illness pointed toward her being positive.  I assumed I would too, considering MY MOM DIED and all.

I look like my mom.  Almost a clone until I became an adult, now I just look a LOT like her.  People who knew my mom when she was younger always tell me that I look exactly like my mom when she was {fill in the blank} years old.  I saw a picture in my grandparents’ basement once, from a newspaper clipping, and was really concerned because I couldn’t remember being in the newspaper for swimming when I was 7 years old.  The picture wasn’t of me, it was of my mom.
I have her blue eyes.  I have her stature.  I have her build.  I have so much in common with her, I just knew, in my gut, that I would test positive.
So I avoided it.
For eleven years, I avoided it.  I read about it periodically, and I had an OB-GYN mention it to me every now and then, but for the most part, I didn’t think about it.
When I was 25 {so 2007}, my OB-GYN sent me for my first mammogram.  Small-breasted women, I feel so sorry for you.  I do not know how they pinch those little things between the . . .  Actually, I can say this and laugh because, well, because I can, but I feel sorry for all of y’all who have to get mammograms.  So yeah, that’s one of the “perks” of being completely artificial! icon smile Guest Post Series:Im a PREVIVOR | laughing in the face of hereditary cancer.
{If you didn’t catch that pun, I will be sad.}
I asked my OB-GYN at the time if I could get tested.  He said, “Sure,” and ordered the test.  He said it would be in the following week, and that it was expensive.  ”How expensive?”  ”I have no idea, maybe … $1,800.”  ”I can’t afford that.”  ”Well, let’s do the test and see.”  ”How will that work?”  ”I don’t know.”
So, he ordered the test, and I went to his office to get tested.  When I got there, he told me I would need to fill out a bunch of paperwork about my family history, and depending on that information, the insurance might cover it.  But I would have to file for it myself.
Might cover it?
File myself?
Um, excuse me.
You are the doctor.
I have never done this before.
I know you’re not an insurance claims analyst, but COME ON and cut me a FLIPPIN’ BREAK, and help me with this, oh, I don’t know, potentially MONUMENTAL DECISION that could impact me for the rest of my life.
That would be great, thanks.
He was so incredibly unhelpful.  I changed doctors a couple years later.  I vividly remember sitting in his office at one of my appointments, I don’t know what it was for, literally sobbing because I was so terrified I was going to die of cancer.  I mean, I had a full-on panic attack.
I was SURE I was going to die of breast cancer.
Y’all, I honestly, TRULY IN MY HEART, as sure as I’m typing these words this very minute, knew I was going to die young.
{I now know better, but if you have concerns for yourself or someone you know, PLEASE email me.}
Go ahead and chew on that for a second.
I mean, what does a woman in her late 20s do with herself if she thinks, really thinks, that she is going to die in 15 years?
I didn’t want to get married.  I didn’t want to have kids.  I avoided all of that in more ways than one.  I began to totally emotionally implode.  I was less than kind to my body.  I had meaningless relationships.  I avoided God.  I didn’t have true, honest friendships or true, honest friends.  I distanced myself, and put everyone at arms’ length.
I basically started living like I was already dead.
And NOT in the “Live Like You’re Dying” by Tim McGraw kind of way.  No.  It the “sucked the life out of me” kind of way.  I didn’t strive for things.  I was depressed, anxiety-ridden, had panic attacks all of the time, turned to food/exercise/wine/dating to keep my attention away from all of this.
{It was literally not until I started writing this post that I fully connected my behavior and mental/emotional health during my late-20s to this.  Totally connected.  Wow.  That certainly makes more sense now.  Moving on.}
Well, I didn’t get tested when I was 25.  I didn’t know enough about my family history, I was having trouble tracking down the information from my aunt {if any of you have dads who know your comprehensive medical history, please give him a medal}, and I already knew the answer anyway.  It was just going to affirm my knowledge that I was going to die of cancer, so what did I need an expensive test for?
Fast forward to 2010, so about 3 1/2 years later.  I was in a serious relationship, and we were talking about future stuff.  I have no idea why he felt as strongly about it as he did, but God bless him for sticking to his guns.  He basically flat out told me that he couldn’t be with me if I didn’t get tested.  His exact words were, “I can’t be with you not knowing.”  So, because the pressure was on, and I could lose someone I cared about if I didn’t get tested, I went.
I didn’t, like, rush out the next day to get tested.  I of course waited as long as possible, and casually mentioned it during a routine Well Woman exam.  She happens to be really knowledgeable about it, and knows some really great doctors who specialize in breast cancer, breast surgery, and breast health.
She referred me to a breast surgeon.  I didn’t really know what I was getting myself into, but I followed her instructions.  At least she was more helpful than the last guy!  I went to see the breast surgeon, and met her wonderful, awesome, phenomenal, best-thing-since-sliced-bread Physicians Assistant Debbie.  Y’all?  Debbie is AWESOME.  That is the only word to describe her!  She is freaking AWESOME.  I went, and she of course did a clinical breast exam.  Then she started talking to me about BRACAnalysis, and what happens if test results are positive.
I walked out of her office with hope, for the first time in years.
{I will talk about options and the decision-making process about that in another post.}
I went home and waited for the results, with the assurance that when if it came back positive, I could take action.  It was the best feeling in the world!  Yes, I do realize there are many other things that can kill a person other than breast cancer, but you have to understand what it is like to literally watch someone you love die.  That is not something you ever get over.  So I had watched my mom suffer and die, and I knew, with this amazing new peace, that if I was positive for BRCA, I could do something.
In late December of 2011, I got a call telling me that my test wasn’t covered.
Say what?!
I was FURIOUS.  I mean LIVID BEYOND DESCRIPTION.  They told me that because I only had two first- or second-degree relatives with cancer, not three, that I didn’t qualify to be covered under my health insurance for the BRACAnalysis.  The out of pocket to pay for the test myself?  A staggering $4,300.  Seriously.  Beyond livid.
“My mom DIED.  Like, SHE IS NOT HERE ANYMORE.  Do they not understand that?!?!”  I kept saying.
Luckily, at the time I worked in a department combined with Benefits as well, so my boss was the manager of Benefits, too.  I marched in his office the minute I got back from out of town* and explained what happened.
*I think I forgot to mention, I got that call while I was staying at my grandmother’s house in NW Indiana, visiting my dying grandmother.  She was in the hospital and I knew it was the last time I would ever have a chance to see her while she was still with us.  I had gone for a “goodbye” kind of visit.  So, that was awesome timing.
He was pretty ticked, and thought that the BCBS rule was stupid.  He started researching it, and assured me that if, after an appeal, BCBS still denied coverage, then he would get it approved through an exception.  He was like, “This is the right thing to do!  I think ONE relative dying of cancer is enough, what the heck is up with needing three?  That’s ridiculous.”  He was somewhat incensed on my behalf.  Good.  I had him in my corner.
I worked with Debbie on the appeal.  I charted out my family history, drew a family tree of who had been tested, who hadn’t, who had had cancer, who hadn’t, age at diagnosis {if any}, etc.  She and my breast surgeon wrote a letter to BCBS stating why the test should be approved.
Months passed by.  No joke.
In early April, I finally called BCBS to see what the status of the appeal was.  I was told that the appeal had been approved either weeks or months before {can’t remember}, they just forgot to tell me.  So, that was a little annoying, but YAY THE TEST WAS APPROVED!
I went to see Debbie THE NEXT DAY to give another sample to send to the lab*.  Remember how I didn’t rush off the first time?  Well, this time I was like, “Let’s get this show on the road already!  I that right there shows the hope that came alive in me. icon smile Guest Post Series:Im a PREVIVOR | laughing in the face of hereditary cancer.
*Can either be blood or saliva, your choice.
On Tuesday, May 10, 2011, at about 5:20pm, I was working out at the gym, just sweating away on the elliptical, when I got a call from Debbie.  She said she had my test results.
“Gayle, you’re positive for BRCA2.”
I laughed, and said, “Well, I guess I’m not going to finish my workout today, then!”
That’s right, I laughed.  I know that sounds strange, but this anxiety had built up in me for SO LONG, I think I was just relieved to finally KNOW.  And.  I wasn’t surprised.  Not in the least.  I was expecting this, remember?  Except now, I knew I didn’t have to be afraid of it.
But even though I didn’t have to be afraid of it, the journey with BRCA2 was far from over.  I made an appointment with Debbie for the next day, and invited my aunt {mom’s sister} to come with me for moral support and to help me ask questions.  She’s a nurse, and my mom’s sister and was around when my mom was sick, so she remembers/knows a lot more of the specifics than I do.
The next day is when my journey to a mastectomy, and freedom from BRCA2, really began . . .

May 28, marked the 13th anniversary of my mom’s passing, please join me in lifting prayers and hopeful thoughts for those whose lives are impacted by cancer in some way.  Especially for those currently fighting cancer.

gayle signature 300x37 Guest Post Series:Im a PREVIVOR | laughing in the face of hereditary cancer.

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