It's All in the Family

Damn it.

Once my sister tested BRCA+, my mom got on the phone and reached out to a lot of family.  She wanted to let them know about the gene and their possible risks.  We were all aware that ovarian cancer preyed on women in our family; now, we were able to put a name to it: BRCA+.

Of course, it's not a given that every person in the family is BRCA+.

Here are some stats:

• Everyone has a BRCA gene.  This genes function is to suppress tumors.  If you have a mutated BRCA gene then your chance of suppressing certain tumors is reduced (hence the increased risk of breast, ovarian, and pancreatic cancers). 
• Because of my twin sister Jill, we knew my mom had to be BRCA(mutation)+.  The mutation doesn't 'skip' generations; It must come from a direct lineage.  From this information, we can also assume my maternal grandmother (she died in her early 40's from ovarian cancer) carried the mutation.  And likely, her mother, who also died of ovarian cancer.    
• Given that Jill and I are identical and have the same genes, I too am BRCA+.  If we were fraternal twins, it would have been a 50-50 chance.  
• My brother has a 50% chance of carrying the mutation.  I'm no geneticist, just ask my high school science teacher Mr. Devore).  The BRCA1 mutation is located on chromosome 17.  It depends which gene Josh inherited.  If he inherited Dad's normal BRCA gene, he is not a carrier.  If he inherited Mom's mutated BRCA gene, then he is a carrier.  
• My son has a 50% chance of carrying the mutation.  Again, if he inherited the gene from me, he is at risk, if he inherited the gene from his dad, Mason (and any offspring) will be in the clear. 
• As a reminder, both men and women can carry the BRCA mutation.  Due to the increased risk of breast and ovarian cancers, it affects women more, however men can definitely be carriers, and affected with increased risk of pancreatic and prostate cancers. 

I was so hoping other women on my mom's side of the family would be spared being BRCA+.  My cousin, Amy (who used to spend hours babysitting me and braiding my long, tangled hair until her fingers were numb) recently took the test.  Her dad (Mom's brother, my uncle) had a 50% chance of having the gene.  If he is positive, then Amy, too, has a 50% chance of having it.  Decent odds of her not having it, right (Note, I'm also no math wiz).  Unfortunately, Amy found out she, too, has the mutated gene.  Just an example of how this gene can definitely be passed down through the male side of the family.  In her words, "that gene is a strong son of a bitch." Nicely, and accurately stated, Amy.  

Amy has some big decisions to make.  There is not set path that you must follow.  And while that is a blessing, it's also a curse.  Since Amy is a Canote, decisions don't necessarily come easily (Grandpa Canote was a notorious worrier).  But, the Canote's are also strong, so I know she's going to be just fine.  Along with being a worrier, Grandpa Canote was also an extremely faithful man.  No doubt he is looking out for us (and probably worried if there is worry in Heaven, which isn't likely) on the other side.  

Love you, Amy.  Can't wait for my hair to be long enough for you to braid again, just for old times sake.  

My First Mammogram

Okay, since everyone is posting "first day of school" pictures, I thought I would share a bit about one my firsts (don't worry, I'll spare you the picture).  Today, I had a mammogram.  Ladies, let me be the first to tell you, they aren't nearly as bad as everyone says they are!  Maybe the 'old school' mammograms were rough, but this wasn't bad at all.  Yes, a little pressure, but nothing you wouldn't get with a good romp in the hay ;).

I checked into the imaging center, and after a bit of paperwork, they sent me to wait in the waiting room.  Get this ~ they had free snacks and soda!  Okay, it was 9:00 in the morning, so I refrained, but goodness, what a nice touch!

After just a short wait, a nice nurse named Tracey called my name... 5 minutes ahead of my scheduled appointment time!  So, not only do they offer snacks, my appointment was on time if only the airlines would take note of all of this!  Tracey walked me back to a small dressing room where she asked me if I had put on deodorant.  I remember when I called for the appointment, they said not to wear lotions or deodorant the day of my mammogram, so like a good little patient I followed directions.  Good thing they warned me because this has literally been the hottest week of the year.  Thankfully my appointment was in the morning, so there wasn't too much time to get all sweaty.  Apparently deodorant contains little flecks of minerals or metal that can make reading your results more difficult.  I was told to take off my bra and top and they gave me a little cape to wear.

Tracey then led me into another room where the mammogram would take place.  I really hadn't been too nervous up to that point, but walking into that room definitely made my heart jump.  It wasn't the machine or the procedure that made me nervous.  It was knowing that thousands of women walk into that room and that is the first page of their nightmare.  I feel healthy and strong, but I wonder if those women felt the same way before they got the news.  There I go again, "going all Canote."  Another reminder that the BRCA+ thing is a blessing ~ a warning to be vigilant and proactive.

Anyway, Tracey manhandled directed me and my breasts into different positions and my mammogram was finished in about 10 minutes time.  She was very friendly throughout the entire thing and made me feel surprisingly comfortable as I was standing there half naked.  Oh, and she had warm hands.  Big plus, there!

Once I was finished, she said that results are typically read that day and my doctor would notify me if I needed to return for additional images.  She also said since this was my first mammogram that it's not uncommon to get called back in for additional images.  She said if that's the case, don't go into panic mode yet, it happens often (Clearly she didn't know who she was talking to!  Of course I will go into a panic.  That's just how I roll.).

After the mammogram was over, I went back into my dressing room, used some complimentary spray on deodorant and off I went.  Total appointment was less than 20 minutes.

Ladies ~ don't put this off!  It's not a big deal at all.  Afterwards, treat yourself to a Starbucks and consider it just part of 'me' time.

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.  

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.