More Appointments....

I have so many things I want to write about... But I just don't have the energy to write like I want to.  So, first, I'm going to write a quick update about my doctor appointments on Monday, as I know some of you are curious to know what I found out (which wasn't a whole lot).
Monday, the Moss clan packed up to head to Springfield.  Mason spent the day with his friend Hollis in Marshfield.  Hollis lives on a farm.  With a pony.  And chickens.  And kittens.  Mason was in Heaven.  Big shout out to my friend Joni for letting him stay for the day.  Knowing Mase was having a great day made my day go a lot better...

So, our first appointment was with DBB, my breast surgeon.  As we pull up to his office, Richard blasts Eye of the Tiger, and that puts a smile on my face.  He gives me the pep talk that we are in this together and that we'll deal with whatever they news they have to tell us.

It's weird.  I have the following interaction with at least 5 different people:

Nurse/Stranger/Waitress/Anybody:  "How are you today?"   

Me:  It's been the worst fucking week of my life.  My tits got cut off, I've all of a sudden have cancer and I have zero tools to deal with this fucking mess.  "I'm okay, thank you.  How are you?"

Richard and I are in the exam room waiting on DBB and Richard is reading a chart about breast cancer.  Somehow he manages to make it fall off the wall.  Typical.  Since Richard has read the entire poster, he thinks he knows how to treat this and we can leave.  Again, typical.

DBB comes in the room and after all the pleasantries, we get down to business.  I'm trying to hold it together.  Stage 1 (1.9 cm), grade 3 (not great).  We are still waiting on something having to do with hormone receptors, I don't quite understand, but I know we are hoping for an estrogen fed cancer.  And we are really hopeful that is the case since this lump decided to blow-up after my hysterectomy.  Fingers crossed!  DBB decides that we really need to do a node dissection surgery to gather 7-10 nodes just to make sure the cancer hasn't spread anywhere else.  We schedule that surgery for Thursday.  He also says that depending on these hormone receptor results, that he may also install a port for chemo treatments.  WARNING: Anytime I hear the word chemo, I start to cry.

Next, we head over to see Dr. Price (DCP), my plastic surgeon.  I'm crying.  When I started this mastectomy thing I was so concerned with how my reconstruction would look and now that seems so minimal.  He took the bandages off of my sutures.  Richard says it looks really good, but I honestly can't bring myself to look yet.  Good news, he did remove one of my drains!  I still have my right drain, but I think they will be removing that on Thursday, before my node dissection surgery (and putting in another drain).

So, we wait... Again.

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.