Family History

One thing that several people have asked along the way is "what prompted your sister to get tested?"  Here is a family tree...  I know this family tree is incomplete, but this captures family members, specifically women, with a history of cancer and goes all the way back to my great-great grandmother.  While this family tree focuses on the bad-ass females on my mom's side, it's important to point out that males can also carry the BRCA mutation and pass it on to their off-spring.  The mutation is passed on directly, meaning it must come from a parent.  It's not something that skips a generation.  While rates of breast cancer are more prevalent in the general population and with BRCA mutation carriers, ovarian cancer seems to be the Canote's female kryptonite.  And that is scary.  All cancer is scary.  However, breast cancer can be detected early and is typically treatable (but, goodness what a long road!).  Ovarian cancer is a bit of a silent killer.  It's much harder to detect and much harder to treat, which is why it is important to be proactive.  

I put this family tree together in 30 minutes using FamilyEcho.com.

My sister brought up 2 great points about our family history:

1.  Now we see why mom was on our case to get tested

2.  Thank goodness we have normal names like Jill and Julie and not Ethel, Olivine, and Mildred

Day 20 update:  No news yet.  However, Jessica (the most amazing nurse ever) called this morning to let me know that she had called the lab this morning to check on things and will be calling them back this afternoon to check on things again.  Okay, I know she is probably just as ready for me to get the results as I am, mainly so I quit calling and bugging her, but I also can tell she is genuinely on my side and is concerned.  She cares.  She 'gets it.'  I'm not just the 9:45 Tuesday appointment.  So shoutout to Jessica and the team at DHL's office!  

Update on my sister:  Jill has scheduled her hysterectomy for next week.  While the results are taking a while for me, it seems that once you come up with a plan, they move pretty fast (if you want to).  When she texted me her surgery date I thought "man, sh!t just got real!"  She's nervous.  But also at peace knowing that she's being proactive.  Again, while scary, we are reminded that this is a blessing.  Look at all the women of earlier generations who wished they had this warning.  

Turning my Pity Party into Productivity

Ok, so it was a tough day.  And that is okay.  My girlfriend (let's call her MS) is a spiritual guru.  She oozes gratitude and grace whatever season of life she's in.  I do good with the whole lean on Him thing when I'm strong, but when I'm weak and tired, it doesn't come so easy (I'm a work in progress). I told her that the whole Let Go, Let God thing just wasn't that easy for me (I suspect it's not alway easy for her but she makes it look effortless!).  She sent words of encouragement and encouraged me to pray and I told her I was tired of praying (insert scary thunder and lightening strike here!).  Her response: "I get that.  Just know when you aren't able to, I am."  Wow!  That was powerful and struck a chord.  I'm not even sure why, but it must have been exactly what I needed to hear!  Did I mention I have lots if brilliant, beautiful friends?!  

After a few hours of hosting my own pity party, I realized I can either spend this wait consumed with worry or I can put all that nervous energy into something positive and productive. So, after the hubs came home from work (and surprised me with a needed Starbucks pick me up!), I got to work...  I worked on a few crafty things and they actually turned out! Even better than the projects turning out, I was in the zone and felt 'normal' again.  My only worry was how kids could wear the turtle shell and that I had been mispronouncing the word 'nunchucks' my entire life.  

Mase absolutely loved my creations - his excitement was music to my ears.  A reminder that I am SO blessed.  Life doesn't have to stop during a storm... In fact, this is all the reason to push on!  Time to make a 'to do' list of things I want to accomplish the next few days.  

Day 17: Still exhausted and a bit livid.

I'm so tired.  Every day I wake up and tell myself 1. to be positive and not to be consumed by this and 2. maybe today will be the day.  I'm tired of having to give my self a pep talk every morning.  I'm hanging on to the fact that it will be 'just one more day.'

Finally, I took it upon myself to call Myriad labs.  So, now I've crossed the line from being that patient to being that certifiably crazy patient.  I didn't have anything to lose.  After giving them some information, I was able to speak with Rachel who was in charge of my case.  (Honestly, I was surprised I was able to talk to an actual person ~ wasn't really expecting that) I just wanted them to know that I am human and I feel like I have been held hostage (granted self-imposed) by them not releasing my results.  I know they are looking forward to their weekend, but I wasn't.  I'm dreading the weekend because I still don't have answers.  I just wanted them to hear that I'm more than a saliva sample.

The conversation went something like this:

Me:  Hi Rachel.  This is Julie Moss.
Rachel: Hi Julie.  I just closed out of your file.
Me:  You did?!  That's great!  Does that mean results will be coming soon?
Rachel: Yes.  We can now start to run your test.
Me:  (Barely able to speak from getting the proverbial wind knocked out of me)  You mean you haven't started my test yet?
Rachel:  Well, we were having some trouble with where to look.  We now know that and am starting your test.  I've put a rush on it.  The test usually takes 5-7 days.
Me:  (Literally out of breath and my heart pounding)  So you mean another week of waiting?
Rachel:  Yes
Me:  Okay.  I'm just so tired.
Rachel:  *Dead silence*
Me:  Thank you.  Bye.

I'm still not sure what the hold up is.  I would have thought since they have Jill's results, my results would have been much faster to locate.  Jill's test was like finding a needle in a haystack.  Her test will tell them exactly where my needle in the haystack is,  and somehow it's taking longer.

I'm frustrated.  And freaking exhausted.  And I wish I could call and give someone a piece of my mind, but 1. that isn't my style and 2. I don't even have the energy to do that if it were my style.

So... More waiting.  I'd give anything if someone would just knock me out and wake me up when this is over.  I catch myself thinking I just can't handle the stress anymore.  But, then I remember, that if BRCA+ the stress has just begun.  It's a marathon, not a sprint.  Thing is, I already feel like I ran that marathon, and now someone really did just pull the tape and say 'sorry, you still have a ways to go.'

Tomorrow will be a better day.

Thanks to all of you who have read the blog and sent sweet texts checking in.  It means a lot.

I know this will come to an end soon.  At least the waiting part.  And I know people who never 'get an end' to their hurt.  It could be worse.  Until then, I will put on my big girl panties and continue on...

Speaking of panties... If I'm BRCA+ that maybe means I would eventually get to throw away all those period panties.  Girls, you know the one's I'm talking about, right?!  That's the silver lining for today.

Day 15: I'm exhausted

Me:  Hi Jessica, it's Julie Moss.  Again.  Sorry to bother you but you said to call back today, so...  *Embarrassed that once again I am that patient*

Jessica:  Hi Julie.  Glad you called.  Let me call the lab and see what I can find out.   

Jessica calls back:  Julie, the lab has processed your sample and are wanting to compare it with your sister's sample since you are twins.  They wouldn't share the results over the phone, so if you don't hear from me by Friday mid-morning, please call back.  Hang in there.   

Me:  Thanks for checking Jessica, I'll call back Friday.  *Hangs up the phone with big tears welling up in my eyes.* 

What does that mean?!  I don't know.  Are they comparing results because I'm negative and Jill is positive?  I mean either I have the mutation or I don't, right?!  And then I remember, some people take the BRCA test and get an inconclusive result.  Was that it?  You would think my worse case scenario would be to get a BRCA+ result.  Nope.  I think an "inconclusive" result would be much worse.  Then, you just have all the worry and anxiety without all the options or support.

I went through and read previous posts, and it seems like I was holding up okay.   Today, I'm freaking exhausted of this whole thing.  It is consuming my thoughts.  I do try to control it, but it's difficult.  Even controlling it takes a lot of energy.  My family and friends have done a great job keeping me busy, inviting us over for playdates, etc (one even hosted a dinner party!  Thanks MB!).  But, it's still on my mind.  Always.  Anytime my phone is out of sight, I go into panic mode.  The anticipation of the call is constantly there.  I have tried praying when I feel anxious.  Honestly, I'm tired of praying.  I'm too tired to even find the words (lucky for me, He doesn't require words, he knows our heart).

I went through a tough struggle about 8 years ago and I remember believing that sleep was God's band-aid.  Sleep was an escape.  I'm not sleeping well.  Can you worry in your sleep?  The answer is YES!  My forehead aches.  Not a headache, like the muscles in my forehead hurt from the constant worried scowl perhaps some botox is in order after this whole cluster.  Kidding!.  My husband offers to let me nap, but my thoughts make it hard for me to get rest.  I've officially 'gone Canote.'  I feel like I've mentally ran a marathon and as I am about to cross the finish line, they pull the tape away and tell me I have another 10k to go.  I don't have a choice but to wait.  But I am TIRED!

So, there's always a silver lining right?  Here's my silver lining for today.  Richard was laying down with Mason yesterday night and I'm in bed checking my email when this email pops up.  It goes a little like this:

From:  Richard
To:  Julie, Jill
Subject:  Howdy Sexy Ladies - Not Junk Mail :) 

Ladies,
I was reading some Facebook messages/comments from Jill's page where people were talking about the BRCA.  They were wishing luck, prayers and wishing you didn't have the BRCA.  If I spell things incorrectly or write poorly, just remember I failed college, barely passed high school and I make over {yadi-yada}k a year.  So, miracles do happen.  It's no accident that you two ended up exactly the way you are.  To create two twins with breathtaking beauty, that extends inside and out as yours does is NO ACCIDENT.  It's NO MISTAKE you're made just how you are.  When God lined the two of you up in his factory He knew exactly what He was making.  He was making a couple of beautiful twin girls that would CHANGE PEOPLES LIVES.  For starters you have absolutely changed mine, Jack's, Jackson's and Mason's.  You have both touched so many people across this globe that it's no mistake you were made exactly how you were.  The mutant gene is no mistake.  If it's part of God's plan that our families were blessed with the ability to learn about this gene early, He has truly blessed us AGAIN.  He's put us in a place to build our game plan.  I know it's scary and I know you both have a lot of anxiety.  Just know that God built you and He did an amazing job.  I know that this little test or curve in the road must have a purpose.  It's not by mistake that it's our family.  God doesn't give you more than you can handle and the two of you are VERY STRONG.  I'm so proud to be married to you Julie and so proud to be your BIL Jill.  You're amazing ladies and basically wanted you to know that God was inspired when he made you girls.  He truly was and if that gene is a part of your DNA it doesn't change what magnificent creations you truly are.  I know this is a challenge, but you're both up for it.  You can absolutely handle it and you can absolutely dominate this shit!  You're a remarkable pair and we are all so gosh darn lucky to have been selected to live life with you.  I know things will work out.  I know we will take care of this hiccup.  I know you all can do it.  Hold your heads high and push your shoulders back.  Get that little hitch back in your swag and go kick the crap outta this BRCA stuff.
RM

See why I love him so much?!  So, SO BLESSED!  And tired.

Day 14: Bring it!

I have good days and bad days.  All my days are good.  I do have high anxiety days and low anxiety days.  As the clock ticks on, my anxiety increases.  The call has got to come soon, right?  RIGHT?  As I've said before, I can handle whatever news they have to give me, I'm just ready to hear the news.  Bring it,  BRCA bitches!  (Obviously, this morning was an Eminen morning and not a Rend Collective morning.)

So while I am waiting on my results I am still counting my blessings (because really besides napping or binge eating, is there any better way to spend your time?).  I've shared this blog with a few of my friends and the feedback has been amazing.  Goodness, I am surrounded by the most AMAZING women ever.  Always have been... Like even before I was born (since my Gill and I shared a womb). 

Speaking of Gill, she goes in on Thursday to discuss options.  There are a lot of options, but quite honestly, they all suck none of them are easy decisions.  I know she's nervous.  Just like those few  times she was called into the high school principal's office. Although now she's not being asked about being at a party, she's being asked to make life altering decisions.  I'm nervous for her.  I'm nervous for me.  

Worrying runs in our genes apparently this BRCA gene isn't the only thing we got from my mom's side of the family.  My sweet Grandpa Canote, my mom's dad, was a notorious worrier.  A big heart and a creative mind can make for some serious worriers.  As Jill would say "Are you going Canote?" (as in are you going postal).

So Jill, here's to 'going all Canote' together.  If your lady bits are ticking time bombs, it's time to call in the boobie bomb squad.  

As far as my results... still no news.  I'm purely putting that out there to the BRCA angels ~ sort of like how it usually rains right after you wash your car.  Still holding out hope I will hear something today.  So, let it rain.

Day 13: Keeping Busy. And still waiting.

No news over the weekend...  Although I did keep my phone close by and my ringer up in case my doctor just happened to be working.

My husband was off this weekend which helped a lot.  We kept busy by visiting family.  Sunday morning we went to church (shout out to Osage Hills!).  It's amazing how when you go to church, you often hear EXACTLY what you need to hear.  Some call it a coincidence.  My mom always called those God winks.  

These lyrics hit home and I found myself fighting back tears of joy as I sang them am I the only one who starts singing and has to fight by tears?  It also happens during the National Anthem.  Truth be told, I can't sing, so I usually just mumble the words under my breath. 

My Lighthouse by Rend Collective

In my wrestling and in my doubts
In my failures You won't walk out
You're great love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea

In the silence You won't let go
In the questions Your truth will hold
Your great love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea

My lighthouse 
My lighthouse
Shining in the darkness I will follow You

My lighthouse
My lighthouse
I will trust the promise
You will carry me safe to shore
Safe to shore

I won't fear what tomorrow brings
With each morning I'll rise and sing
My God's love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea

Fire before us You're the brightest
You will lead us through the storms

I really find comfort in music.  All music.  I was thinking I need a theme song/playlist for this journey.  So far, my playlist is composed of My Lighthouse by Rend Collective and I'm Not Afraid by Eminem.  How's that for an eclectic taste in music?  If you logged into my iTunes, you'd probably think I was bipolar.  Really, I'm not.  I just appreciate all types of music.  Except the blues.  Which is probably considered a sin on the Moss side of the family. 

"Too much quiet time in my house makes for a noisy time in my head."

So, I officially became one of those patients today…  I called my doctor's office and spoke with Jessica, the super nice nurse that administered my test.  My conversation went something like this:

Hi Jessica, this is Julie Moss.  I took that BRCA test early last week.  Hey, I know you are busy and have real things to do today, but I would feel so much better if I just had some sort of information.  I know they can't speed up my test, but I'd just like something.  I'm going crazy up in here!   

Jessica called Myriad to check on my test probably as she was noting in my chart my unstable emotional state.  All they could say was that they have my sample and are working on it.  While it's not a ton of information, it is something.  At least I know the wheels are turning.  They've confirmed my test did not fall out of the FedEx airplane.  And, no fire :).

During the day when I stay busy I am fine.  But at night, when Mason has gone to bed and Richard has started to doze off, I start to worry.  Too much quiet time in my house makes for a noisy time in my head.  Last night, right before I went to sleep (which isn't super easy these days), I remember a few tears falling down my cheeks.  It wasn't even close to a full on crying session so I clearly wasn't a total mess.  To be honest, at the time, I wasn't even sure why the tears were falling.  I was thinking that things could be SO much worse.  Tears were falling and I still felt really blessed.

I had scrolled through my Facebook page (because isn't that what people do when they can't sleep?) and saw something about a child with cancer.   I cannot begin to imagine what that kid and his parents are going through.  I know I can handle anything, but having a terminally ill kid might just do me in.  Then, this morning, I saw a video of a soldier's coffin being transported and the ceremony that takes place during the transport.  I saw that and thought that some family lost their mom/dad; siblings lost a brother/sister; and parents lost a child.  I also felt patriotic watching and impressed how hundreds of strangers stood quietly observing this stranger hero.  There is a lot of pain in this world that warrants agony and tears.  These images put my little journey into perspective.

So, as I write this, I think I know what the tears were about.  While my head, and my heart to some extent, knows that everything will be okay, my heart is scared.  Scared of what?  I'm not sure…  I know I can handle a positive result.  I know my family will do whatever it needs to do to ensure I can 'fix' whatever is wrong.  I know my marriage is solid and will only grow stronger.  I know I have the sweetest kid sleeping in the next room.  Life is f'n great good.  Actually it is WAY better than good.
I've been trying to prepare myself for a positive BRCA result, but still catch myself fantasizing about a BRCA negative result.  It's a blessing that my twin sister was tested, which prompted me to get tested.  But, its also made this process harder that I don't have the luxury to fall back on the safety of the numbers.  My sister got the comfort of knowing that only one in 500 test positive for this mutation (of course, then she got blindsided with the BRCA+ results).  I carry the weight of knowing my twin sister has the mutation, so I don't get the weeks of waiting with 'odds on my side.'  Odds are not on my side.  But, God is.  And family is.  And really, that's all that matters.

Gotta go… That's my sweet sister calling to check on me.  She's dealing with her own shitstorm journey, yet still takes the time to check in on me.  Told you, everybody deserves a Gill!