Race Day

This past weekend, I ran 13.1 freaking miles on my one year cancer-versary.  It was simply AMAZING.  It's an accomplishment I worked very hard for.  Something that no one can take away from me.  It was the end of a chapter (cancer) and the start of a new one (as a runner).  Believe it or not, I've never considered myself a runner... Until I crossed the finish line and decided I want to do another run.  I feel like I've finally earned the title of runner.

I wanted to share a bit about my race day.  

I set my alarm for 4:30am and hoped to sleep well the night before the race.  Of course, I didn't sleep well... I was wide awake at 3:30.  After trying to go back to sleep, I finally got up around 4am to start my OCD carefully planned out routine.  It wasn't the 13.1 miles that had me stressing out.  {TMI ALERT!!} My finely tuned routine had one goal in mind: a pre-race poo.  For any of you that run, you know how important this can be.  For weeks, I took mental notes about my routines and which activities would increased the chances of reaching my goal.  My routine was on point and 85% of the time, I could predict success.  All I needed was a cup of coffee, a half mile warm up, and indoor plumbing and BOOM! I was in business. 

Here's what my morning looked like Believe it or not, I actually took notes on my phone so I would remember the details of the day:

Pre-Race

4:00 - Up and at 'em.  Make coffee.  Shower and brush my teeth.  Goodness it's early. But, it's going to be a great day! I've trained so hard and it's finally here!

4:20 - Get dressed, eat banana.

4:30 - Write prayer list on my arm.

4:40 - Time to get the shit show on the road!  I decide to run The Link, the indoor tunnel that connects our hotel to the Crown Center.  I run for about a mile and a half, praying my colon body starts to wake-up. 

5:24 - I take coffee back to the room for Richard and go hang out on the toilet a bit.  As a psych major, I know the effects our environment can have on our behavior.  So, I figure it can't hurt to just go sit for awhile.  Still nothing.  

5:30 - It's got to happen soon, right?  I go down to my friend Carrie's room, where we talk about the race.  And poop.  I'm getting worried this isn't going to happen.  1.57 miles in.  Still not happening.  

6:15 - We meet our friend Whitney and Whitney's mom in the lobby.  We are going to do a quick jog to the WWI Memorial (I'd say it was maybe a half mile away).  It was cool and crisp.  Union Station was lit up blue for the Royals and Whitney is telling us about her Grandpa, who has a bench named after him at the memorial.  We get to the bench, say a prayer, and decide it's time to get back down to the start line.  

6:40 - Our hotel is close to the start line, so I run back up to the room to try to go one more time.  At this point I'm panicked!  The race hadn't even started yet and I've logged 3 miles already and still no dice.  

6:45 - I kiss Mase and Richard as they are in bed.  Mase is up and we do our family 'handshake' where we put our hands on top of each others and yell 1...2...3...Moss.  It puts me in a good headspace to hit the course.  

6:50 - Carrie, myself, and 11,000 other runners get in the chute (sort of like a corral for runners).  I feel the urge to pee, but don't have time to go because the race is going to start soon.  I'm nervous, I've worked so hard to poo, I'm positive it's going to hit me sometime during the race.   

The Race

7:10ish - The race starts.  The energy and excitement can be felt in the air.  Holy cow, this is happening.  And I haven't pooped.  Just go with it, Julie.  It's too late to worry about that now.  Enjoy it! You've got this!

Mile 3 - I'm praying for my marriage, per my prayer list.  Richard sends me a quick text of encouragement that I can read on my watch.  Rascal Flatts's song Won't Let Go starts to play on my Beats.  Richard would play this song for me when we were traveling to our doctor appointments.  Tears start to flow.  Dammit.  Stop crying Julie.  Suck it up.  Crying takes energy.  And you need the hydration.  Stop it!   

...You think you're lost.  But you're not lost on your own.  You aren't alone.  I will stand by you.  I will help you through.  When you've done all you can do, you can call.  I will dry your eyes.  I will dry your eyes, I will fight your fight.  I will hold you tight and I won't let go.  It hurts my heart to see you cry.  I know it's dark, this part of life.  It finds us all when we're too small to stop the rain, oh, but when it rains, I will stand by you.  I will help you through...  (Rascal Flatts, Won't Let Go)

Mile 5 - I'm praying for my Gillispie family and I quickly text my sister (thank you Apple watch for enabling me to text while I'm in the middle of a race.  Apple: Feel free to send me a free one for this endorsement).  Jill starts sending me texts of encouragement.  She has been following me the entire time using a tracking app.  She's encouraging me and telling me about water stations coming up.  Even though she was in Florida, it feels like she's running with me.  Another boost.
Mile 8 - I'm getting tired.  I've done a few hills.  The excitement of the start line has worn off.  Still a long way to go.  I round a corner and hear this familiar voice yelling "Go Julie! Go Julie!"  I look around and it is my friend Alicia, who lives about an hour away from KC.  We logged a lot of miles about 3 years ago, navigating motherhood.  Alicia ran a half marathon (I started training with her, but quit).  She knew exactly what I was feeling.  I stopped very briefly to give her a hug and a kiss and she told me to keep running and that she was proud of me.  She's got tears in her eyes and I'm choking back tears again.  She spent a precious morning traveling and fighting the crowds to come cheer me on for all of 3 seconds.  It's just the boost I needed to get over that 8 mile slump.  As I run away, I look back and can see her cheering me on.
Mile 9 - Richard sends me a quick text letting me know that he will be at Mile 11 (with him are my in-laws and Mason).  Another boost... Plus the Sport Beans I ate at mile 5 are starting to hit.  I kick it up a notch.  The motivation that my family is just a mile ahead keeps me going strong.
Mile 10 - I'm praying for all Survivors, especially those I've come to know in a Surviving Together Facebook group.  Praying for those who fought the battle and lost.  Praying for those who signed up for clinical trials so that I could get the best treatment possible.  Again, another boost to keep me going.
Mile 10.5 - I am running hard, okay as hard as you can after running 10 miles, and I'm looking for my crew.  I do this for about 15 minutes, expecting to see them any minute.
Mile 12 - I finally see Richard, Mase on his shoulders and my in-laws.  I quickly stop and give them high fives.  Mase thinks I'm like a super star athlete.  I can hear him ask "Daddy, is mommy winning?" Richard says "Yep, she's winning!"  Talk about a major boost!  I know I'm close to the end.  I've got about 10 minutes of the race left.
Mile 12.5 - I round the home stretch (although a half a mile is still a long ways after you've ran 12) and again, I see Alicia.  She's yelling that she's proud of me and tells me to finish strong.  I'm humbled.
Mile 13 - I see the finish line.  I'm soaking it in.  I'm a bit sad the race is coming to an end.  I feel so strong in that moment.  I'm proud of myself and cannot believe I've done it.  Cannot believe all that has transpired over the past year.  I quietly whisper "I WIN."  And, I'm thankful I didn't have to poop during the race.
After the race, I meet up with Alicia and my family.  Mason is so excited about my medal and decides  he wants to wear it.  Of course, I let him.  I know this was a team effort.  This entire year has been a team effort.

My cheering section!
My friend Alicia who was there to cheer me on in the very moment I needed a cheerleader.
Carrie, Whitney and I celebrating the finish.
My prayer list.
1...2...3...Moss cheer.
My race swag.

Oh, and my story was mentioned on the front page of sports in the KC Star!  You can read the article here: http://www.kansascity.com/sports/other-sports/article39351111.html

A bit of Advice...

Mase and I are retiring from a week in Florida, where we visited my sister.  We had a fabulous time!

One day we visited the beach.  As I was standing, looking at the ocean, I reflected on the last six months.  I took in the moment, having the warm sunlight on my head, feeling my feet in the sand, looking back and seeing my sister who I missed so much, and listening to Mase and my nephew giggle while jumping over the waves.  It was perfect (well, as perfect as could be without Richard being there).  I'd fought hard to be in this moment.  The thought of this trip, this moment, was  what got me through some really tough treatments back home.  This was my reward.

Florida was a great place to rock the bald.  Have I mentioned the amazing feeling of feeling the warm sun on your head?  I almost feel bad for those of you who don't get to experience that feeling (okay, not really, but it really is a great feeling, especially after a cold Missouri winter).  My sister pointed out to me that at nearly every outing someone would come up to us and comment on my lack of hair. Some would offer a compliment and some would share that they, too, were a survivor.  One lady stopped us at the park and told me that I was rocking the bald look and that she was inspired by it to make an appointment for her annual check up.  Inspiring?  I don't know about that, but I LOVE that my bald head can bring some awareness (well, plus the fact that at times I can be an attention whore).  I also love hearing Survivor's stories and the sisterhood/family that we share.  While I'm happy my hair is very slowly growing back, I recognize that my gateway into the conversation is closing, and in some ways that saddens me.  Other stories and encouragement means so much to me ~ to meet someone who really gets it without you having to explain it ~ it's powerful.

My sister asked how she should handle it if she sees someone struggling with cancer.  She often feels pulled to reach out and offer comforting words, but she also recognizes it may not be her place, as some people may not want to share.  As mentioned in previous blogs, it really is a risk to say something.  Not everyone is as open about it as I am.  Personally, I appreciate when people mention the struggle (attention whore, remember?) or share their stories with me.  Let's be honest, when I rock the bald, the truth is pretty much in your face with my big, shiny peach fuzz covered, head.  Since I'm a people person and will talk to just about anyone, it is a great conversation starter.

A things to remember:
1.  If some one's struggle is obvious, I think it is okay to say something encouraging to them.  It feels good, for both the giver and receiver.  It's amazing how a stranger's words can make an impact on you.  I can still remember the woman who stopped me after walking out of a book store and complimented my newly shaved head.  I was scared and insecure about my new look and her encouragement really served as a boost for me, letting me know it was going to be okay.
Chances are if someone isn't open to talking about their situation then they would take steps to make the struggle less noticeable, such as wearing a hat or a wig (which would be dreadful in Florida!).
**Hold please, as I type this very post, a gentleman came up and started asking about my hair and sharing about his daughter's struggle.**
2.  Take cues ~ If someone is closed off after you say something encouraging, smile and walk away!  If someone is open and accepting of the encouragement, I've found that people, myself included, love sharing their story and educating others.
3.  There are lots of different types of cancer and lots of different types of chemo.  There are even multiple ways to treat breast cancer, depending on the various markers your cancer has.  I know some lucky bitches women who have had a lumpectomy and that was it.  They found and removed the cancer and no further treatment was needed.  Some survivors have to do radiation treatments (Ouch!  Think of getting a sunburn in the same spot 30 days in a row ~ oh, and I think they some how bolt you down to a table while this is happening).  Some must take hormone blocking drugs for 5 years.  Some do a type of chemo that doesn't cause hair loss.  Some chemo can be taken in a pill form, some has to be done through an infusion through a port. One friend of mine who is a straight up bad ass has had to do all these treatments.  Shout out to you Jenn!  Some drugs cause weight gain.
Me?  Oh, I was "lucky" enough to gain weight and lose my hair...  There must have been some sort of mix up because I was hoping to lose some weight and gain some hair ;).
4.  I feel like this is stating the obvious, but not everyone with cancer loses their hair.  On one hand, I find myself jealous of these folks... Although I totally admit that isn't fair.  Their struggle is just as real as mine.  Perhaps, their struggle is even harder because they don't have the chemo haircut that seems to open the door to connect with other survivors.  In a way, they suffer alone.  There is some comfort in walking through Target and not having to put on a happy face or even look presentable - I'm sick and I get a free pass.  No one expects much out of a cancer patient and I look the part of a cancer patient.  Those who don't lose their hair probably don't get that free pass.  Others may consider them less sick, while in reality they are fighting the same battle as every other cancer survivor.

Jill and I were trying to think of a good starter if she felt compelled to say something to someone.  Between well over $50k of education and two Master's in Counseling degrees all we could come up with was "Looks like you've been through some trials lately..." and go from there.  Profound? Hells No.  But I told her she needn't worry about being profound or saying the perfect thing.  Only worry about being sincere and genuine.  It isn't the words that are important, what really matters is what's on your heart.

In case you are wondering about what not to say, please refer back to the blogpost about that by clicking here.

You're Welcome

Dressing up... Just because we can.

In case you've wondered where I've been the last week, my crew and I have been busy saving the world.  You're welcome.

It's A Family Affair

The BRCA mutation doesn't just affect individuals.  It affects families.  Both my mom and my sister also have the mutation, therefore raising their chances of breast and ovarian cancer.  We've all addressed the ovarian cancer by having total hysterectomies.  Now, it's time for my mom and my sister to take action on reducing their risks for breast cancer.
On Monday, Jill had a bilateral mastectomy with DTI (direct to implant) reconstruction.  While her surgery was different than mine, I know it's no walk in the park.  There is significant pain and it takes upwards of 6 weeks to recover.  My mom flew down to Florida to help her for the week.
I have such mixed feelings about Jill having the surgery.  I am so relieved that it's over and so proud of her for taking steps to reduce her risk.  I hurt for her because I know the recovery is tough.  I also am hesitant to celebrate, as I know she hasn't officially crossed the finish line yet.  She is still waiting to hear back on her pathology results, which she is hoping to hear back on Friday.  Obviously we are praying for a clear pathology report.  She didn't have any issues of concern before her surgery, but I've heard several stories of people who went in with no concerns and still came out with a cancer diagnosis.
Mom is also in the process of scheduling her surgery.  She probably needed to get her mastectomy before any of us, but she insisted on waiting until Jill was recovered and I was finished with my chemo treatments.  That's what mom's do ~ they put their kids before themselves.  My mom can't get her surgery soon enough.  With her having a 50% risk of breast cancer before the age of 50 and an 87% chance before she turns 70, I feel like she's on borrowed time.
I hate that we all have to do these intense surgeries to reduce our risks.  But, there is comfort in knowing that someone else knows exactly what you are going through with the difficult decisions to go through with the surgeries.  We all know what it is like to think about our risks.  To get the call that we are BRCA+.  To make the decision to have a hysterectomy and mourn not being able to have more children.  To wonder if the risk of a bilateral mastectomy is worth the reward (I think my cancer diagnosis made that a much easier decision for everyone ~ You're welcome, girls).
It will be such a relief once we can celebrate everyone getting a clean pathology report back!  Looking forward to that day!

Jill, my mom and me (several years ago).

UPDATE: Jill's pathology report came back today all clear!  Big sigh of relief on that one!  Can't wait to celebrate that the next time we get together!

Reflections on 2014

2014 has not exactly been easy.  In fact, it's been one of the most physically and emotionally draining years of my life... And on my entire family.

• We were bee-bopping along until July when my twin sister, Jill, found out she tested positive for the rare BRCA gene mutation.  I was tested in late-July and in the middle of August found out that I, too, had the mutation.  
• In September, my family and I made the decision that it was time to take care of business: I had a complete hysterectomy.  It was the easiest difficult decision I've had to make.  Sometimes I still get sad that Mason won't have a sibling, but I also remind myself that the reason why I did the surgery was so I can be around a long time to serve my family.  
• A month after my hysterectomy (mid-October), I completed my preventative surgeries by having what was supposed to be a prophylactic bilateral mastectomy.  The surgery was extremely painful... Even more painful was the phone call I received on Friday, Oct. 17th telling me that they had found cancer.  I endured countless sleepless nights and tears wondering if I was doing the right thing...  I endured painful surgeries and decisions in order to prevent cancer ~ yet it got me anyway.  I was devastated.  My family was devastated.  

So, yeah, not an easy 2014 to say the least... But I feel more blessed than ever.  

• In early July, we took a vacation with the entire Moss/Snyder family.  It was a week filled with sunshine, sand and family.  Memories made that we will never forget! 
• My sister taking the BRCA test saved my life.  My positive BRCA status saved my life.  We would have never been able to afford the surgeries on our own, and I wouldn't have pursued them without being BRCA+.  My BRCA status meant that insurance would cover a good portion of my procedures.  It meant that despite having a clean mammogram, I was able to push through and have the mastectomy my gut told me I needed to do.  I've learned to trust in my instincts, at any cost.  
• I've learned that I have an amazing husband.  I always knew Richard was amazing, but this year he has been my rock.  My marriage has grown and strengthened.  My love for him cannot be explained.  We vowed through sickness and in health, but we never imagined we would be tested like this.  
• I've learned to enjoy normal.  During my months of treatment, normal days are often few and far between.  Normal days are a huge gift.  I pray I don't fall back into old habits of taking normal days for granted.  Each day truly is a gift.
• My 'village' of friends are the cream of the crop.  They anticipate needs before I am able to speak them.  They pray for me and with me.  They listen when I am crying and cursing this journey.  They don't judge.  They just sit beside me and accept me exactly where I am without one ounce of judgement.
• My family, both immediate and extended family, have my back no matter what.  All of them have dropped what they are doing to assist in anyway possible.  Especially my mom.  She's comes up during my chemo weeks to help with Mason and the house.  Truth be told, I don't really need her to help with those things too much, but I do need her presence.  I am so grateful for the quality time we have gotten to spend together.  
• Our faith has grown exponentially.  Honestly, my faith has been growing all year though out 2014, thanks to an amazing group of ladies group I am part of.  At the time, I had no idea that God was preparing me for this trial.  I've learned He always provides us with what we need.  He knew I would be facing a trial and He put me in a place to grow spiritually so I was prepared.  

New Year's Eve 2014

Feeling blessed and looking forward to 2015.  Life is still good, God is still great!  

Abundantly Blessed

For the most part, it's been a good week.  I'm finally getting over a cold, which I likely got while my immune system was down.  Thankful I am starting to feel better and also that I am hopeful I will be well for my next treatment, which will be this coming Thursday.  

Ugh!  I have a love/hate relationship with my treatments.  I dread it.  I've found my good days getting clouded by the dread of knowing what's to come.  I know next weekend I will be very sick, very achy and not able to do much of anything.  I know my only goal next Saturday, Sunday and Monday will be to make it through the day.  It almost seems sinful to waste a good day, such as today, with worrying about the future.  But, the worry manages to creep in.  

I also love the fact that after my next treatment, I will be 1/3 the way through.  And by New Year's I will be half way finished with my sentence treatment.  I'm hoping to have a cute, spunky hair style by summer.  I can do this!  It's just a season, right?  Come to think of it, New Year's day I will likely feel the same way some of you may feel on New Year's Day.  Hungover.  I guess I can take comfort in knowing my chemo hangover isn't of my own doing.  

Okay, back to being abundantly blessed.  I've been working on Christmas cards, and as I write each one, I am reminded of why I am abundantly blessed.  It isn't at all the things around me, it is the people around me.  It's my boss and department I work for that has been beyond supportive of me.  It's my friend Joni in Marshfield who watches Mase when I have appointments and showers him with love.  It's my friends Sam and Tara who I haven't seen in nearly a year and continue to text me at those times I need the support.  Their texts of encouragement always seem to come just when I need it.  Or my best friend from high school Sarah, who always makes me smile and we can pick up a conversation so easily just like we did in high school.  Or my mom and dad, who have been beyond supportive of me ~ not just with this cancer ordeal, but my entire life, whether I deserved their support or not.  And my sister.  Especially my sister.  Today she told me "it's okay to tell me when you have bad days.  You don't need to protect me from those.  I want to be there for you."  She said she can tell when I have a bad day because I won't answer my phone.  She's right.  She knows me all too well.  I miss her something awful!  

And then there is my little family.  I look at Mase and I just want to cry ~ but in a good way.  I love the little guy he is becoming.  He has a heart of gold!  I am so thankful that he's not old enough to be embarrassed of me and my bald head.  That would break my heart.  Instead, he helps me pick out my hat and headscarves, and I almost always go with whatever he picks.  If only time would slow down.  That kid has my heart.  I love him so much that it makes my heart ache, again in a good way.  And then there is my husband.  Who continues to shave his head since I am losing my hair.  Who still wakes up in the middle of the night to ask me if I need anything.  Who loves me unconditionally.  And supports me and encourages me to be me...  I am humbled that I get to be married to such an amazing man and that Mason has such an awesome example of a man to look up to.  I love both of them so much it's quite frankly hard to even put into words...  

Even though I have this cancer thing going on, I still feel like the absolute luckiest girl in the world. 

An Update

An update on my Gill:  Jill is two weeks out from the bomb squad taking care of business (her hysterectomy).  She is doing remarkably well!  She has started driving again and is able to take care of some light house duties.  Physically, the recovery has been easier than expected.  I won't say it's been easy by any means, but she's capable of doing a lot more than she thought she would be (and most definitely doing more than she probably should be).  Physically, the first week was rough, but the second week has been a turning point.  I don't think she was prepared for the emotional toll the hysterectomy would take on her.  She said the first week was horrendous, but seems to be leveling out the second week.  That Gill is such a trooper!  Seriously, she's my hero!

An update on me:  Yesterday I received my mammogram results and everything appeared to be normal!  Hallelujah!  I know that there are a lot of women who would give anything for an unremarkable finding.

Today, I met with a highly recommended plastic surgeon to find out my reconstruction options.  I visited Dr. Carl Price in Springfield, MO.  His office staff was extremely friendly and made me feel very comfortable.  Dr. Price was sincere, attentive, personable and gave me a very realistic picture of the best route of reconstruction (even though it really wasn't exactly what I was hoping for).  Dr. Price also gave me the name of a breast surgeon who could handle the mastectomy; I will be meeting with him in a week to discuss the ins and outs of the mastectomy procedure.  I'm anxious.  But, really glad to be gathering all the information possible now, so that when I'm ready to press forward, I have the information to do so.

I've done quite a bit of research online, but this was my first time to visit with an actual person about the reconstruction process.  I was hoping I was a candidate for an immediate reconstruction (often called a direct to implant reconstruction).  Dr. Price said he would do either procedure, but preferred to do a stage reconstruction with tissue expanders.  The stage reconstruction lasts between 3-5 months (Yikes!) but he said he gets better results with that procedure and there are fewer complications and risks.  Once I was finished with Dr. Price, a nurse led me to a room where they took some 'before' pictures.  Goodness, that was an experience!  I had never been topless in front of a camera before I SWEAR!  So, that was a first, and once my 'after' pictures, that will most certainly be the last :).

Overall, my spirits are good.  I've been keeping very busy with work and planning Mason's birthday party and when you are neurotic like me, staying busy is your friend!  I do get scared when I think about the hysterectomy, so I just try not to think about it (if only it was that easy!).

One of my biggest stresses was how I would get my nose piercing out before my surgery.  Yes, I'm getting ready to have a couple of major surgeries and I am worried about a little nose stud in my nose.  My sister candidly told me "Julie, anyone going through menopause probably shouldn't have a nose piercing."  Touche Gill!  So, out came my nose piercing.  There is so much stuff I cannot control, so after about 3 hours of worrying about this (I told you I was crazy!) I just decided to take it out and be done with it.  I miss it, but I'm not stressing anymore about it, so that's worth something.

Shitty Sister of the Year Award Goes to Me!

Today is our birthday.  And, I made my sister cry.  So, the Shitty Sister of the Year award goes to me!  She assures me that it really wasn't anything I did, but it still is hard to see my Gill struggling.  But, truth be told a beer commercial would make her cry right now.  I've not been there yet, but I remember after having Mase, I had a few weeks like that.  It was tough.  I remember feeling so blessed and yet felt like I was constantly crying.  It was miserable.  I know she will fight through it..  Just wish she didn't have to.

Seriously, Jill is doing okay.  She knows people are praying for her and she appreciates those prayers so much.  When I call her to check in, she puts up a strong front, but I can tell that while the physical recovery seems to be much easier than she expected, the emotional roller coaster is tough.  She did say Jack brought home a box of cupcakes and a mango tea from Sonic and that made her feel better ~ that's the Gill I know and love!

Jill's Surgery Update

Thanks to everyone who said prayers and sent words of encouragement to Gill.  She anxiously reported for surgery around 5:30 this morning, surgery started around 7:00 am and wrapped up close to 8:00 am.  DHL reported that things went well and that he expects a typical, normal recovery for a hysterectomy.  I spoke with her a bit ago and she seemed to be in good spirits and not in a ton pain.  She was quite proud of herself for going pee on her own.  That Jill, always setting the bar high for herself.  Like when we were little I remember her career goals were to be a "Sandwich Artist" from Subway.  Aim high, Jill!

Jack, Jill's husband yes, their names are Jack and Jill, sent me this picture of Gill right before surgery.  My first thought was how beautiful she looked (seriously, who can rock a hair net like that?!).  Then, the worry started to set in and the tears started to flow.  You see, I know that look on her face.  You may see a pretty smile, but that's her "I'm going to smile because I'm fighting back the tears look."  Most of you may not be familiar with that look from Jill because she is so strong.  But, I know that look.  Goodness I love her!  

Jill before surgery... and likely after they gave her some medicine to calm her down.

Throw Up some Prayers/Thoughts/Good Vibes Please!

Just wanted to ask anyone reading this to say a prayer, send a good vibe, send good thoughts, or whatever you do out to Jill!  She has her hysterectomy surgery in the morning and is feeling quite anxious right now.

1. I wish her luck
2. I'm glad she's going first and not me :)
3. Love you sis! 

She's promised to take notes and to keep me posted so I could be well prepared for my surgery.  For most, taking notes while hung-over would be an issue, but lucky for me, Jill already practiced that a lot in college.   

As for me, I have scheduled my surgery date for mid-September.  It's still a few weeks away, so I'm not going to allow myself to worry just yet.  I also scheduled a mammogram for early September.  I am a bit worried about that, but was able to console my worry with an egg McMuffin and some new jeans.  How's that for coping?!  

A List of BRCA Do's and Don'ts

So, a few weeks ago, my sister came out of the BRCA closet on Facebook.  For the most part she had tons of supportive friends.  In fact, everyone was likely intending to be supportive, some just had their own ways of showing it.

We came up with a few rules on what to say and not say when you encounter someone dealing with a health crisis.

1. Do be respectful of their decision to share.  They are likely doing so because they either need support or because they are wanting to educate others.  How is anyone supposed to get educated on a topic if no one talks about it.  
2. Don't suggest their genetic condition could change if they just would follow the XYZ Diet.  Again, very well intended, but while I read a well meaning post, what my head was saying was "Hey, Fatty! It's your own damn fault."  By the way Jill is not fat and has in fact worked her tail off to get healthy. She's probably in the best shape she's been in since... well, forever.  
3. Don't try to sell me something you make commission off of to make it better.  Again, perhaps this was well meaning and I'm sure they intended to help.  But, it wasn't really the time nor place.  *I actually did have one friend who private messaged me and truly wanted to educate me on some oils.  He acknowledged I may be skeptical and wanted to share his experience and skepticism with me.  So the oils weren't really my thing, and while he wanted to share his research with me, not once did he try to sell me anything.  His willingness to share his research was appreciated.  And, his willingness not to sell me on anything was appreciated as well. 
4. Don't point out the 'positive' side of the facts.  Again, well meaning, but not so well received.  Yes, there is a 12% chance you won't develop cancer at all.  Yippee F'n Yay!  If you want to play Russian Roulette with your cancer chances, by all means, go for it.  For once, I think the Gillispie girls are going to play it safe.  
5. When someone needs support, don't give them Bible verses to look up (unless of course we ask for those).  The thing is, when you are dealing with a health issue, there's a bit of mourning that goes along with it.  Adios ovaries, uterus and fallopian tubes.  Sayonara beautiful/potentially deadly breast tissue (truth be told my sister and I both have fabulous breasts ~ until we found out they might be conspiring to take us out!).  Ciao ability to have future children.  You mourn these things and when you are sad/scared and needing support and someone sends you back Bible verses it's like they are saying "You're doing it wrong!  You don't have any faith."  
6. PLEASE don't share how things could be worse.  Yes, we know they can be worse.  In fact, we spend much of the day telling ourselves they could be worse.  We spend the other part of the day being scared about the future, but we have to quickly stuff those feelings because we are still moms, wives, and teachers and we don't have the option to curl up in a ball and take a nap (okay, I DO do that, but only when the hubs is home to take over).  But, we don't want to hear it from you how lucky we are...  Just say, "I love you" or "I'm here for you" or tell us a dirty joke to get our mind off of it.  Believe it or not, Jill and I really feel like we are lucky to have this news.  But when we are struggling with all of it, we don't want to be reminded of how damn lucky we are to get our lady bits cut and pulled out through our hop-ha and that they are going to slice and dice our fabulous breasts to pieces.  True, we weren't chased on top of a mountain by ISIS, but give us a break and realize that sometimes you don't have to fill the 'quiet space' with how it could be worse.  Just acknowledge we are scared and it does sort of suck.  
7. Do ask questions.  We are completely okay talking about it.  In fact, it feels good to educate others.  We aren't shy just ask anyone who was at all those track parties in college or hung out with Julie in 2007 through 2009.
8. We really don't want people to feel sorry for us.  We do want support, but we don't want pity.  We truly do feel lucky (just don't tell us that).  

Follow-Up Appointment

I must say, I've held up really well this past week.  I STILL haven't broken down about the news that I'm BRCA positive, and maybe I'm realizing it's nothing to break down about.  As Mom always says, "It is what it is... and will be what you make of it."  So, it is what it is.

On Thursday, I had a follow-up with DHL.  Have I mentioned how amazing he and his staff are?!  So, I was feeling all strong and all while Richard and I were waiting in the waiting area, but did get nervous after we had been called back to the exam room.  But, let's be honest, seeing that little table with the paper on it probably tends to make anyone a little nervous.  After a bit, Jessica-nurse-extraordinaire came in to check on us and gave me a folder with lots of BRCA+ statistics.  Then, a few minutes later, DHL came in.  He sat down, and could probably see the look of fear on my face, as the first question he asked was "Julie, how do you feel about being here today?"  My voice trembled and said I felt okay, but I was a little scared.  Richard reached over and grabbed my hand to comfort me, and I felt much better.

In his calming, soothing, confident way, DHL went over the numbers.

• Up to a 50% chance of breast cancer by 50, and 87% chance of breast cancer by age 70 (normal rates are around the 10-12% range)
• Up to 60% chance of ovarian cancer by age 70 (normal rates are .8-2%)

While I knew these stats, hearing him say them were sobering and scary.  We discussed options, which again I knew, but still scary to hear him say them.  The best chance for reducing cancer risk were a hysterectomy and double mastectomy.  

Now, I know some people reading this, might think it's a bit radical to follow through with these recommendations.  And, that's okay.  A post about what to say and not to say to someone BRCA+ soon to follow.  The thing is, my mother was 8 years old when her mother died of ovarian cancer.  Her mom was sick for years prior to that.  Ovarian cancer robbed my mom of her mom (granted she did gain my Grandma Canote as her fairy step-mother ~ she was an amazing lady).  My sister and I have determined we will not let that happen to our kids...  And, thanks to modern medicine, we don't have to take that risk.

Once we talked about my results, Richard left and DHL did a quick exam to make sure things were as they should be and that a laparoscopic hysterectomy would be appropriate.  Typically, he's quite gentle, although this time he seemed to be a little more aggressive thorough.  Of course, I might have been a little more scared/tense this time around too.  He said everything appeared to be normal, so yay for that!

We discussed a few dates for the hysterectomy, but nothing is set in stone yet.  I'll keep you posted.  Just know that in the next few weeks and months if I am a raging bitch a bit sensitive, then there is actually a medical reason for it.  Wondering how long I can use the "it's a medical condition" for an excuse...

After leaving DHL's office, we had to go to the lab for a quick blood test.  I believe it is called a CA-125 and is supposed to indicate risk for ovarian cancer.  DHL warned us this test isn't very accurate at all, but it was the best they had.  That's the scary thing about ovarian cancer, it isn't easily detectable and by the time it is detectable, it is often in the late stages.  I'm not overly concerned with these results, although perhaps I should be.

Update on Jill:  She is going in next week for her hysterectomy.  It will likely only require one night in the hospital and she should be back to mostly normal activities (no heavy lifting) in nearly a week. Just like most things in life, Jill is taking the plunge first, so she can fill me in on all the details.  She's always been the rebel out of two of us.  

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.

"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!

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)