Day Nine. And still waiting...

Day nine and still waiting…

A few observations:

1. My mom is basically the only person who calls me.  Which normally is fine.  But since I'm waiting for 'the call' to find out my BRCA test results my heart skips a beat and I get paralyzed with fear for a few seconds every time my phone rings.  So, mom, if I'm a bit jumpy when I answer the phone, my apologies.
2. It would be great if you could track your 'sample' the same way you track the $7 t-shirt you order from Target.com.  I get it, these things take time.  But my mind starts to wonder and I'd love to see the hold-up the process.  Did my spit sample arrive at the lab?  Have they contacted my insurance about a prior authorization?  Is my DNA so spectacular that they are wanting to see what makes me so awesome?  Is there a back-up in the lab?  Was there a fire?  Oh goodness, what if there was a fire and I have to start this waiting thing all over?!  Did I warn you that at times my mind goes a bit crazy?  So if anyone has connections to Myriad labs, maybe ask them if they can spring for some sort of tracking system, just like our failing post office system offers.
3. I'm tired of carrying my phone with me everywhere.  Which is silly, because I usually always have my phone with me, anyway.  But, I'm not usually waiting for a phone call.  Normally my phone is for my convenience.  I answer it if I want to and ignore it if I want to…  It's like I'm a bit of a slave to my phone this week.
4. At 5:00 pm, I am a bit let down that today wasn't the day I got the call and a bit relieved that for the next 12 hours I don't have to worry about missing a call.

The BRCA testing experience

Yesterday, I took my BRCA test.  Aside from my anxiety, the test was a breeze!  The nurse invited me back and we quickly went over my family history.  If you are getting tested, I would highly recommend being organized during this process, as the greater family history you can show, probably the more likely your insurance is to spring for the test.  While the test is very expensive, Myriad, the testing company, works with your insurance company getting prior authorizations and arranging payment.  When testing, you sign a waiver stating that if the out-of-pocket cost is $375 or less, then Myriad will go ahead and run the test.  If the out-of-pocket cost exceeds that, then Myriad will contact you before they run the test.  I pray that insurance will cover my test (my sister hasn't received a bill yet, but didn't get a warning call, so her bill will be less than $375), but honestly, I will need to have the test ran either way…

To take the test, the nurse simply opened up the BRCA test kit, gave me a little bottle of Scope mouthwash and told me to swish for 30 seconds and spit the contents into this little specimen container.  I had to do that procedure twice.  That's it!  Not much harder than your morning mouthwash routine!
Now we wait…  The nurse said I should give it about 10 days.  My sister said it took her about 3 weeks to get her results back.

I was so glad that Richard was able to come to the appointment with me.  While it was a quick and painless appointment, it was great to know he was there.  I must say, while I am still a little anxious, my anxiety has really decreased after taking the test.  It just feels good to know I am not in a 'holding pattern' any more.  I've done what I can do at this point.  The ball is rolling.  Today is a good day, and I KNOW that God can see around corners that we cannot.  No matter how all this turns out, it's a blessing.  At least for today, I am at peace knowing that no matter what the outcome is, everything will be okay.  Even the worse case scenario, it will be okay.

"The Waiting is the Hardest Part" ~ Tom Petty

Lot's of anxiety today, as tomorrow I go to take the BRCA test.  I'm driving 3 hours to Joplin to take the test with my old OBGYN.  I contacted a doctor locally, but they said they couldn't get me in until the end of August.  F that!  I'm not worried about the test, as it is a simple mouth wash that the doctor sends off to the lab.  I have anxiety about waiting.

I am relieved to get this process started.  Being in limbo is the WORST for me!  I don't function well with ambiguity.  I like to have a plan.  Right now, my plan is just to wait.

On a side note, in grad school, I often learned about anticipatory anxiety.  Awhile back I was trying to throw this fancy-schmancy word around and my overly-intelligent-smartass-brother Josh, reminded me that "all anxiety is anticipatory."  Noted.

Truth is I'm scared.  I'm scared about every possible outcome.  You'd think I'd at least be hoping to hear that I am BRCA negative, but nope, I can suck the fun right out of every possible scenario.

If I'm positive: there will be a long road ahead of me.  It would mean that I my chance of getting breast cancer would be hovering around 87% (the average is 10-12%).  It would mean my chance of ovarian cancer (which has taken out several women in our family) would be between 40-60% (the average is 1-2%).  But, the on bright side it would mean I could get treatment that would be covered by insurance.  And it would mean after that treatment, I would get peace of mind.  Even though it would be a long road, eventually, I could put all of this behind me.  And, it would confirm that Jill and I are indeed identical twins.  Which may not sound like a big deal, but for me, it is.  We share something special…  And truth be told, I think I would be a tad bit massively disappointed if I found out we weren't identical.  I love being a twin.  I wish everyone had one.  Everyone needs a Gill.

If I'm negative: there will be guilt in knowing that my mom and sister have to go down this road and I have been spared.  There will be a lot of anxiety, knowing that even if I don't have the gene, I will always wonder if my next appointment will be the one where I hear bad news.  There may be relief, but at this point, I'm not sure I can convince myself that I would be 'safe' from breast or ovarian cancer. There will be embarrassment knowing that I spent all this time worrying over nothing.  There will be that whole twin thing…

My husband, Richard, is taking off work to make the drive to my appointment.  I told Richard he didn't need to go to this appointment.  I'm not scared about tomorrow's appointment, it is the results appointment I am scared for.  But, he insisted.  He said he wants to be there for me ~ as I may not feel like I need his support today, but tomorrow may be a different story.  Goodness, he knows me well… That I'm slightly crazy emotional and my emotions can turn on a dime.  Gosh I love him!

Richard and I walking the beach

BRCA What?!

Due to an extensive history of ovarian cancer on my mother's side of the family, my mom has been on my sister's and I case about getting the BRCA test.  We've always resisted… I mean, who has time to do that sort of stuff?!  Once we looked a bit further into it, we really resisted.  The test is over $4000!

Once my mom shared a little more of the family history and to get my mom to stop nagging us, my sister decided to get tested.  At $4000 a pop, I figured I would just go with whatever her test results because you know we are twins and all :).  I've always been the thrifty one.

Honestly, I thought the test was stupid.  Aside from the price, the percent of women with this genetic mutation was very slim.  Something like 1 in 500.  Hey, I know we are special, but come on, we aren't that special.

It was July 11th, 2014 when my sister called.  My family was getting ready to head out for a family vacation with my in-laws.

"Um… Julie.  Um… I got those test results back.  Um…  Um…  It said we have that gene."  

I could tell my sister was blindsided!  Looking back, it shouldn't have come at a surprise, but are you ever prepared to get the news that your chances of breast and ovarian cancer is significantly higher than the general population?  Just over the phone, I could tell her head was spinning.  And then, my head started spinning.

Jill said I should get tested too.  No shit Sherlock.  I called to set up a testing appointment.

Waiting a week for my appointment seemed like forever…  but that is okay, because I was at least at the beach on vacation.  That week, I would go through moments of sadness, being scared, and ironically, feeling very blessed.

I was sad that my sister, and likely my mom were facing these battles.  I was scared for them.  And, I was scared for me.  I like to make lists and check things off those lists.  This BRCA stuff isn't something you can quickly check off the list.  It's something you must deal with for the rest of your life.  There were BIG decisions that both my mom and sister would have to make.  And, perhaps I would need to be making those, too.

I also felt extremely blessed.  I soaked up every moment with my family.  I put my phone away for the week and listened to my son giggle as he played in the sand.  I admired how my husband interacted with all of my nieces and nephews.  Not sure I would have soaked in those moments without this sort of warning.  I came to the conclusion that if I did have this mutation, it was a GIFT!  How many women get a warning like this?!  In a way, the possibly of being BRCA+ would be a blessing.  And, I have insurance.  I'm LUCKY BLESSED, no matter what the outcome would be.

I remember going out with the family to watch the sunsets on the beach.  They were breath-taking.  As I stood on the beach, looking at the vast ocean that God created, I reminded myself that if God can create this, then he can certainly handle any curve balls that came my way.

My father-in-law, Jimmy Snyder took this photo on our family vacation at St. Pete's beach.
I look at it and it takes me back to that place of feeling at peace with whatever God has in store for me.  

My sister and I look alike.  But I know looking alike doesn't mean we are genetically identical.  If we were indeed genetically identical, then I would 100% have the BRCA mutation.  If we were fraternal twins, then I've got a 50/50 chance of having the mutation.  Ugh, the unknown is killing me.  Okay, it's not killing me, but it is definitely killing my ability to sleep through the night.

Can you tell us apart?  (I'm on the left, Jill is on the right)