Another Pink Angel in Heaven

Celebrating our friend Carrie.  She's the one with the killer smile in the middle.  

I was added to a Surviving Together Facebook group when I was first diagnosed... I didn't think much of it at the time.  It was a small group, probably less than 100 ladies.  I didn't know anyone personally who was part of the group.  But, the more I began to creep on their group page, I realized these ladies 'got it' in a way no one else could understand.  We offered encouragement, advice, and prayers.  Once I moved back to Joplin, I would even join the ladies for lunch or meet ups.  The instant acceptance of these women was amazing.
One girl had a smile that I will never forget.  Carrie was stage 4.  She was a few years younger than me and had 2 small children, one Mason's age.  We were diagnosed around the same time.  While I didn't get to spend a lot of time with her, she made me feel like I was a cherished friend.  She loved big and loved hard.
She finished her treatment from breast cancer and days later had a seizure.  The cancer had spread to her brain.  She had brain surgery, and still displayed that amazing smile and attitude despite the complications.  The cancer continued to spread.  And Carrie continued to balance the fight with living her life fully.
The last time I saw Carrie, we went and saw the movie The Shack.  I remember that movie touched me, but I couldn't help but wonder how that movie touched her, given the hard battle she was continuing to fight, being Stage 4.  I had to rush out of the movie to pick my son up from school, so I never got to talk to her about that... Oh, how I wish I would have followed up that movie with a coffee date...
A week ago, Carrie shared that she was out of options and was being put on hospice.  I knew she was inundated with calls and messages, so I thought I would wait a week or so and message her to let her know how she touched my life and offer her some insignificant, blubbering  words of encouragement.  When I would see her, I would often share "Hey, at least I'm not Carrie Couch."  It was my way of acknowledging that her battle was hard.  She always laughed when I would point that out.  It feels good to have our struggles acknowledged.  And with this group of ladies, you could get away with that kind of humor, because when you are dealing with something as serious as cancer, it feels good to laugh -- no matter how inappropriate.  I was figuring out a way to tell her she was taking this "at least I'm not Carrie Couch thing too far".  Days after sharing she was out of options, Carrie passed away.  She leaves behind a husband, two young boys, and a lot of friends -- because Carrie made everyone feel like a friend.  I'm heartbroken I'll never get to tell her thank you for welcoming me with open arms and her big beautiful smile.  I'm heartbroken for those who were close to her -- while she was fighting her own stage 4 fire, she took time to pour buckets of encouragement into others.  I'm heartbroken for her 2 boys who will only remember their mother by the stories people tell.  She was an amazing person and taken way too soon.  She was an angel to a lot of here on Earth, and now I know she is an angel in Heaven.  God must have needed her, but man, it hurts to see her go.  This world needs more people like Carrie Couch.
Carrie's service is today.  I can't be there, but I'm there in spirit.  I'm crying as I type this -- Life is so unfair.  But you'd never hear Carrie say that.  She would say God is good, all the time.
I was feeling very stoic today until a close friend of Carrie's posted "5 more minutes".  I knew exactly what she meant...

#BodyByBacon - Ketogenic Diet

Today I had to pleasure of sharing my story with a human sexuality class.  I teach online, so anytime I can get in the classroom, it always makes me feel more connected to my work.  Since I moved away from one of my schools, I got to visit with the class via Skype.  I'm always grateful to share my story. As prep, I read through some of my blogs.  It's always an emotional journey to revisit those.  Mainly, it makes me feel thankful for the support I had during that time.

One student had a question about if I changed my diet since my diagnosis and it dawned on me that I haven't really shared much of that on my blog.  The answer is a resounding YES!  About 11 months ago, I stumbled upon the ketogenic way of eating.  I'm cautious to call it a diet, because it really should be a lifestyle change.  Diet sounds like a temporary fix, this is something for the long haul for better health.

I'd love to say that I was disciplined enough and started the ketogenic way of eating for better health. That would be a lie.  Truth: I was uncomfortable and my fat pants barely fit.  But, as I researched the keto eating plan, there was a lot of evidence that sugar feeds cancer - and by eliminating sugar, we can help manage cancer risks.  So, while I started for completely vain reasons, I'm continuing because I feel great and it's just one more tool in my cancer fighting tool box.  I lost about 20 pounds the first 4-5 months.  The last 6 months I've been in maintenance mode, which means I am following the general ketogenic ideas, but I'm far from perfect.  Progress, not perfection is my motto.

A ketogenic diet basically is extremely low carb, moderate protein and high fat.  Lots of people have asked me to share my plan, so I created an instagram that shares a lot of my meals and progress.  If you are interested, follow me on Instagram at @learning2lowcarb.

Aside from the 20 pounds weightloss, I've had tremendous success in other areas.  Now that my mind isn't consumed with food every 3 hours due to a carb crash, I have so much more time to devote to other things.  I also have much more stamina (both in workouts and everyday life), as my body has learned to use it's own fat for fuel.  The hot flashes are greatly reduced in frequency and intensity.  Several other estrogen related issues have improved as well.

Full disclosure: I did ask my oncologist about this diet and he wasn't sold on the idea that it would protect me from a reoccurrence.  I think the research is new and inconclusive as far as medical standards go.  But, I think it's promising.  So, I want to be clear and say that it isn't something he prescribed.  He did say it wouldn't harm me to try, so if it was working for me, he saw no harm.

Keto on!!  If you have questions, hit me up.  I'm happy to share what knowledge I have.  Or recipes.  Or on how to stay regular with all that cheese.

BAM! The Anxiety Hits out of No Where!

Hi everyone!  I don't write often... which is PROGRESS!  I don't think about cancer everyday unless I am seeing where my hair is a bit thinner than it was prior to cancer or noticing how cold my breasts are since there is no fat to insulate them.  In fact, I go weeks without actively thinking about it.  And then BAM!  The anxiety monster shows up and I have to walk myself down from a full on panic attack.  This happened yesterday.  Now that I am back of sane mind, I suspect the four cups of coffee I had contributed to the anxiety.  And while it was somewhat self induced, it doesn't make the attack itself less real.  I belong to a lovely group of Survivor Sisters and it's amazing how they can echo your feelings and walk you off of that cliff that pops up out of no where.

That 'cancer cliff' can come out of no where.  I'm 3 years out from my diagnosis.  I've taken every step possible to protect myself.  I've had the surgeries.  I did the harsh chemo.  I've stopped all hormones.  I eat a very low sugar diet.  I live a healthy lifestyle.  I am extremely lucky that my cancer wasn't in my lymph nodes and I caught it relatively early.  And still occasionally, the fear creeps in and nearly paralyzes me.  The tears start to flow.  The thought of putting my body and my family through all of it again is too much to take.  I get short of breath.  My heart is pounding.  I'm a counselor, so I know those feelings are scary but they are just feelings and it's important to just feel the feelings.  But, it's uncomfortable.  And it's unplanned and inconvenient.  And for that hour it is really scary.

Let me share something with you... As cancer survivors we get special treatment.  If you were to tell your doctor you had headaches, you might be told to take some ibuprofen.  If I told my doctor I had a headache, he'd probably draw some blood, check tumor markers, do a complete exam checking for any lump, and may order a costly scan "just to be sure."  Initially, I might attribute the headache to stress... But, if it persists, it's scary because there is always the underlying "What if it is back?"  So physically, we are well cared for.

I had an amazing team of doctors.  And not one of them have addressed the mental aspects of cancer. I'm not faulting them, it's out of their scope, I suppose.  But it's a very real need that presents itself long after the cancer is treated and in remission.

Heavy Heart

Hey gang.  I haven't checked in for a bit... Truth: I don't think about breast cancer everyday anymore (yay!) so honestly I don't have a ton to write about on this blog.  

I did want to share that yesterday, we lost one of our pink sisters.  I'm on a Facebook group with about 130 local survivors.  It's a place where we can ask questions that likely wouldn't be acceptable anywhere else.  We talk about our cancer's, our reconstruction, our funny stories, ask questions, post word of encouragement or prayers, spread the word about local fundraising efforts, etc.  

We hate when new members are added.  We know how hard the battle is, and how much the start of the battle takes.  Even worse, is when we lose a member.  It's sobering to think "that could have been me." We lost a member on Christmas Eve.  I'd never met her in person, but she was active in the group and was extremely encouraging and had a gorgeous smile.  She was 39 years old.  Her young kids, around Mason's age, will forever have a cloud over Christmas Eve because while everyone is celebrating the holiday, they will be thinking of the mother that they lost.  No doubt in her final days, she was worrying about how her family was going to make it without her.  There is a husband who has to figure out how to do life as a single dad.  He has to figure out how to mourn his wife's death and still hold it together enough to be a strong support for their kids.  I cannot even wrap my head around the weight they must be feeling.  I take comfort in knowing she's not in pain any more, and that if you are going to Heaven, I'd say Christmas is a great time up there!  But, for those on Earth, it's heart wrenching to think what they are going through.

When we hear of this news, we think about friends who are still battling.  We think about our own lives and how our families would be without us.  We get a big lump in our throats, say a prayer for our friend's family, one for our own, then we choke back the tears and move on... Because that's all we can do.  

Another Small Victory (and a surprise that meant the world to me!)

I just celebrated my 2 year cancer-versary.  In some ways it seems like forever ago that I got the call.  In other ways, I am reminded that just 2 years ago we were fighting for my life.  It was an absolutely whirl-wind.

To celebrate my 2 year cancer-versary, I took my newly curly/wavy hair and tried to put it in a ponytail.  It's small and requires a few bobby pins, but it's there!  No victory, either in cancer or life in general, is too small to let pass by without a little mental celebration.

The very next day, I opened up a package from my sister that came in the mail.   I took out a sturdy, silver bracelet.  I got all teary eyed and smiley, because I had seen them before, but didn't know if it was a legit product.  It's a small piece of jewelry that tells a big story.  Plus, it's from my Gill.  Thanks Jill, such a thoughtful surprise!

It's a bracelet designed for holding a pony tail holder.  A small gesture that means so much!  

Also, since moving to Joplin, I've been able to connect with some fantastic women from our Surviving Together Facebook group.  Within 5 minutes of meeting these gals face to face, I felt at home.  They get it.  Looking forward to getting to know these gals better.  There is an instant connection.

My Survivor Sisters supporting our pink sister Carrie at her chemo appointment.

Lastly, I've been feeling under the weather.  I thought I've been dealing with allergies, turned out it is a wicked case of pneumonia.  Something Survivors, and all women in general, tend to do is tough it out.  I toughed it out too long and a simple cold turned into pneumonia.  Ladies, take care of yo' self! Since I've been laying low, I've been doing a little crafting to surprise my new friends with... Glitter seems to make everything, even sick days, a little better.

So much to be thankful for.  I think this will be a great Christmas reminder of all He has helped us overcome.  

Being on the Other Side

My friend, JB called me moths ago to ask about my surgeon. While I was happy to pass on Dr. B's name (I have 100% confidence in Dr. Buchner and his staff), my heart sank. While I had no way of knowing the outcome of her situation, I did know what hearing the words "there's a mass" does to you.  Initially, it makes you all hot. Dizzy and nauseous. It makes everyone's voice sound like Charlie Brown's teacher. It changes you... Because even if it's nothing, it makes you realize it could have been something.

Today, JB and I met for breakfast.  She had a mass removed and was waiting on pathology results. And, while nothing can really make the waiting game any easier, some cinnamon chip pancakes can't hurt. 

We sat down and I knew that look on her face.  The smiling-to-keep-from-crying look. The exhausted-haven't-slept and keep-running-through-the-possibilities-in-my-head look. The trying-not-to-show-my-crazy look. She shared a bit about her appointments and her procedure and I can't help but be taken back to when I was in that situation. There were lots of similarities and I hated that she was stuck in the dreadful holding pattern. I prayed that her outcome would be different, but I know that while prayers are nice, it doesn't make the waiting easier.  

Here's the thing... the waiting is the same for everyone in that situation. Those days spent waiting for that phone call are the same, no matter what the outcome is. It's intense, exhausting and pretty much way worse than any sort of procedure. Let's be honest, the pain. Des after a procedure are nice, but what would be even better if they could give you something to deal with the agony of waiting for the results. 

After breakfast, JB called to get the results. BENIGN! And while that was great to hear, I know that doesn't negate the mental and emotional assault she's been under the past week. 

Worry about nothing, pray about everything (Philippians 4:6) comes to mind. And while ideally that may quiet our heart, I know it doesn't always quiet the mind during a crisis. 

Checking in...

It's been awhile since I have written, so I thought I would check in.  Truth is, life is still full of ups and downs.  And while those ups and downs keep me busy, I've got to admit, they are minimal compared to what the ups and downs were last year around this time.

I think back to this time last year.  When I literally felt like I was on the brink of death.  You can read about that experience here: http://www.blessingsandbrca.blogspot.com/2015/03/an-exorcism-of-sorts.html

Still blessed.  Still feeling strong.  Trying hard to hold on to the perspective change that a cancer diagnosis brought.  While we want our normal back, the truth is I don't want all of my normal back.  I love the perspective we gained during our struggle: that most things in life don't matter.  That disappointment is relative.  Hardship is relative.  Every single day we feel healthy is an absolute gift.

Honestly, as time passes, I find that perspective of just being grateful for the simple things is waning. The high of beating cancer doesn't feel as triumphant any more.  I miss that high.

So, I'm searching.  I'm working on weeding out things in my life that don't draw me closer to that high... That includes time spent on social media and honestly, some friendships.  I'm trying to invest more in things that make me feel good: spending time in the morning with a devotional and reading the Word.  Loving the sound of Mason singing the Star Wars theme from his room as I type this.  Running.  Being outside and feeling sunshine on my face.  Being intentional about time with friends.  Just being intentional.  About anything.  Work.  Naps.  Cleaning.  Food.  Coffee.  Finding joy in being in the moment of whatever I am doing.

Keep on, keeping on, friends.

 

Good News!

I'll cut right to the chase: GOOD NEWS!  Yes, there are two small cysts on my liver, but they aren't dangerous.  Praise the Lord!  I feel like I can fully move forward now.

Now, the backstory:  I reported to my MRI.  Pretty sure the most painful part of all of it was paying for it.  Since my insurance has started over for the year, that bill was a whopper!  But, I must say, while paying the bill stung, I am so grateful to have insurance and to have access to great medical care.

So, upon checking in, I start feeling nervous.  We did a really good job not thinking about the 'what if's' and walking into the building was a reminder that things may not be okay.  I was quickly greeted by a cheery, outgoing young man.  He did my intake and took me back to a changing room.  Bonus: I didn't have to take off all my clothes, just my bra, which had wire clasps.  That would have been great and all, except I wore a white shirt, so there I am walking out to my room with no bra and a white shirt.  Oh, and it was cold.  Oh, and while my breasts have no sensation, they can detect cold, and one nipple seems to be a little more sensitive than the other, so... there's that ;).  Luckily, the gentleman quickly greeted me with a warm blanket ~ not sure if it was meant to cover up my winking nipples or what, but it was very much appreciated.

Sidenote: This time last year, I never wore a bra.  It was amazing.  And now I am realizing that I'm getting my 'normal' back by being self conscious when I don't have a bra on.  Props to normalcy!

Once my IV is started, I get led back to a room with the huge MRI machine.  I lay on the table and am given ear plugs.  The machine is loud!  I sort of start to panic in my head, as I see the tube I will be placed in during the test.  Go find about a 24 inch drainage tube outside and fit your whole body into it.  Oh, and give someone a hammer to bang around while you are in the tube.  That's pretty much what it is like.  45 minutes later (and I did actually relax a bit ~ those MRI machines have nothing on a 5 year old who has a blaring iPad and a blaring tv on all at once) I was finished.  I did a good job of keeping calm as long as I wouldn't let my mind wander about those dreaded 'what ifs'.

And I was worried I'd have to fart.  Mainly because of this hilarious story I once read: http://www.huffingtonpost.com/elaine-ambrose/dont-fart-during-an-mri_b_6044578.html. So, I guess I'm happy to report that not only were my MRI results fine, but I also managed not to fart during the test!  #Winning!

Ugh, My Body Hates Me. And another confession. Don't judge.

So, I not so patiently waited for my CT scan results to come in.  I was so excited to get the call that I was officially all clear and start kicking some butt in 2016.  I've signed up for a few half-marathons, planned out vacations with the family, thought of some ambitious goals ~ This was going to be my year to move forward.  I was psyched!

Today, we were at a playdate and I saw the "No Caller ID" show up on my phone.  I knew it was either a telemarker or my oncology office with the results.  It was a cheery nurse on the other line to let me know my scan results were in.  As soon as she said that, I got all excited about getting the news and my sweet girlfriend being there to celebrate the all clear!  I instantly envisioned us doing a 'cheers' with our coffee cups.

I stepped out of the room so I could clearly hear my results.  I wanted to take the moment in fully ~ This was big - This was going to be the start of a new year.  She took a deep breath and then started talking.  I tried to make sense out of what she was saying, and while I could hear her, I wasn't putting the words together very well.  Before I even knew what was happening, I got the hot, starry blackness feeling that happens before you pass out.  I sat down on the stair case.  Words I heard were: Liver. Lesion.  Abnormal.  Cyst.  Benign.  Malignant.  MRI.  I couldn't make sense of it, but I knew it wasn't what I was hoping for.

I'm not in the mood to talk about it.  I just wanted to write my feelings down, so know that by the time I post this, hopefully the panic will be gone.  God is still good all the time.  I am confident this is nothing... I know lesions or cysts are common - most people just may not be aware of them because they don't get scans.  And, I know that I can and will handle whatever comes my way.  Truth is, though, I am tired and I don't want to handle any of it.

I felt like cancer made me better.  But, I honestly don't feel the same about these little hiccups.  I'm tired of looking over my shoulder, so to speak.  I was so excited and prepared to start looking forward...

Still blessed.  Stressed, but blessed.

(Sidenote: I'm thankful I was with friends when I got this call.  Immediately, they sent me home to be with Richard and get some stuff in order.  They offered to take Mason for the afternoon.  They let me vent and cuss.  No judgement.  Just genuine friendship.  Love you ladies!)

UPDATE: After some digging, I was able to get access to my report and had it read by the very best doctor I have ever known (my Dad!).  He said it didn't look like any major cause for concern.  They are just being thorough, as they should be.  Truth is, you may very well have lesions on your liver, you just aren't lucky enough getting scans to tell you.  So, I will follow through with maxing out my out-of-pocket insurance payment for 2016 the recommended MRI, but I'm really not worried about it.  My oncologist doesn't believe it is cancer related.  And I'm feeling very optimistic.  My liver MRI is scheduled for next week.

Confession: *Please don't judge me!  We all do stupid shit I'm just stupid enough to share it.* I told Richard that this is probably karma for the 2 weeks I experimented in college.  I was looking for a sympathetic "Oh, Julie.  No it's not!" but instead, he said "You are probably right!"  But, let's be honest, if our bodies were karma for what we did in college, a lot of you would probably be in some serious trouble!  HA!

And with that confession, I just feel the need to publicly apologize to my mother and mother-in-law.

"Just to be Safe" (and a story about the time I peed my pants)

Last week, I had a 3 month follow-up with my oncologist, Dr. Ellis.  I must say, it's a great feeling walking into that office knowing I am just going to get a little stick for some blood work, and nothing else.  Honestly, I don't even feel like I belong there any more...

All went well with Dr. Ellis and I graduated to 6 month appointments.  Upon some discussion, Dr. Ellis decided it would be best for me to go ahead and have CT scans for the next 3 years, just to be on the safe side.  He said he wanted to take a conservative approach since I am so young and if things were to go wrong again, it would likely happen in the next 3 years.

I have mixed feelings about the scans.  On one hand, I am excited to officially get a clean bill of health to start off my new year.  I feel that may help remove any doubt that something could be lingering since I am no longer doing my maintenance chemo.  On the other side, I know I can't just go in for a scan and not consider the possibilities.  Scans are an opportunity to reinforce my feeling of health, but the are also an opportunity to stress about the 'what if.'

Lucky for me, the schedulers worked to get my CT scan in before the end of the year so it would be covered under this year's insurance.  So, on Dec. 31st, into the imaging center I went.

Once I filled out the paperwork, the procedure was relatively quick.  They start an IV, I go into this room with the big imagining machine and lay on this table that moves me in and out of this circular machine.  The tech warned me that the contrast dye may give me a bit of a metal taste in my mouth and a slight flush feeling.  I thought to myself I've been through chemo and have been thrown in instant menopause with hot flashes and night sweats, I can handle a little flush feeling.  Y'all, as soon as they started pushing the dye through my IV, I felt this intense warm feeling all over my body (image your body being one of those 'Hot Hands' pouches that heat up).  Again, I can handle the hot flash part, but what I wasn't prepared for is the incredibly warm feeling in my groin.  It felt like I had peed my pants... And, believe it or not, I know exactly what it feels like to pee your pants as an adult.  It was about 5 and a half years ago.  I was in my sister's driveway, 8 months pregnant.  I started laughing about something and could not stop (a common occurrence when I'm with my sister).  Well, needless to say, that wasn't the only thing I couldn't stop.  Yep, right there in Briarbrook Circle, I full on peed my pants.  We're not talking about a little dribble.  I'm talking about having to run up stairs and take a bath because my jeans were completely soaked.  I digress.  Luckily, after about 30 seconds of that feeling, my body started to return to it's normal feeling.

Honestly, I hadn't worried about the scan much at all... Until I was lying on that table.  Once I was over the panic of thinking I had peed my pants, my thoughts started to drift off to the worse case scenario.  What if it's back?  What if they find some other issue that I wasn't even aware of?  Luckily, the scan was quick, so I didn't have too much time to whip myself up into a full on frenzy.

Of course, the tech can't tell me anything about what they see on the images.  I so desperately want them to break protocol and tell me that everything looks great.  She tells me that she doesn't see anything that warrants her keeping me there... What the hell does that mean?  I think to myself "No shit Sherlock, I know I'm not having a heart attack or anything, but they send women with cancer home every day."  I study her face, hoping she'll give me a reassuring wink or something... But I got nothing.

As I'm leaving, she compliments me on my hair.  Naturally, I'm assuming she is complimenting my hair because she feels sorry for me based off of what she sees on my scan that she can't tell me about. I mean let's be honest, my hair looks Justin Bieber stuck his finger in a light socket.

Okay, after having got on with my life, I've only thought about these results a few times a day.  I'm not wasting much time crossing the bridge before I have to.  I joke, but for the most part, I have every reason to believe I will get the all clear results I so badly wanted to hear from the tech.

I'll post an update once I get the results.

UPDATE: FUCK Dang it, not the answer I was looking for.

It's Like a Sucky Sorority

Last week, I was at my son's basketball practice.  As I was walking in, looking for a seat along the sidelines, I notice a woman about my age.  She's mostly bald.  She's smiling as she's watching her son practice.  A flood of memories come back to me. I remember sitting at the soccer field.  Trying to focus on Mason practice, but at the same time, self conscious around all the mom's with great hair and looking all put together.  For me, it was just a risk success to make it out of the house.

I debate whether or not to say something to her.  It's a risk.  What if she chooses to have her hair like that?  What if I offend her?  Is it really any of my business? Then I come to my senses and think no beautiful, young mother would choose to have her hair like that.  No, it's none of my business, but it's worth the risk to reach out to a fellow survivor.  The worst that could happen is she's annoyed.  I'm sure it wouldn't be the first time I've annoyed someone.

I ask if she's a survivor (I am 95% sure I already know the answer).  She's two weeks out from her surgery.  Upon hearing this, I feel like I've met a sorority sister.  The cancer sisterhood is just like a sorority except:

• Instead of fixing each other's hair, we offer to share hats and scarves.  And biotin (its a supplement that is supposed to help your hair grow).
• Instead of cute, embroidered sweatshirts, we wear ugly surgical bras and pouches that hold our surgical drains.
• Instead of living in a house where there is a house mom, we are the mom.  Trying our hardest to take care of ourselves, as well as our families.  
• Instead of a busy social calendar, our calendars are filled with doctor appointments, scans, chemo treatments, radiation, and phone calls to the insurance company.  
• Instead of learning the mission/creed of the sorority, we learn the meaning of words like oncotype, HER2, ER/PR, Red Devil.  
• We don't have secret handshakes, we just know to greet each other with very gentle hugs. 
• We don't have big dances.  We just have end of chemo celebrations.  
• Instead of choosing a charitable organization to support, we are the ones who need the support.  

But, there is a sisterhood; An instant bond.  I don't need to explain to my new friend Tammy what I've been through.  She knows all too well.  My heart breaks that I've met another young mom who has been through this, but I can't help by be a little excited that I've met another sucky sorority sister.  

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

Prayer List for Race Day

Today, on my cancerversary, I will be running 13.1 freaking miles.  Lord knows, it will be an emotional day.  Running that long isn't only hard on your body; it can also be hard on your mind.  I plan to keep my mind focused or perhaps distracted, which isn't a bad thing when you are fighting wind, cold, exhaustion and hills by praying for specific people at each mile marker.  I want to make the most of this experience and want to think of as many people as I can who have supported me along the way.

Here's my prayer list (not in order of importance).  Tomorrow morning I will write it on my arm in permanent marker (let's hope it doesn't sweat off!):

Mile 1 - Okay, admittedly, this prayer will be for me and all my fellow runners.  May we all be safe during the race.
Mile 2 - Mason
Mile 3 - My marriage (I am so blessed to be married to an amazing partner!)
Mile 4 - My Gillispie family
Mile 5 - Soldiers, Police Officers, Firemen
Mile 6 - Cancer survivors (shout out to my Surviving Together sisters!)
Mile 7 - My Moss/Snyder family
Mile 8 - My team of doctors, nurses, and their support staff
Mile 9 - Our country
Mile 10 - My amazing friends
Mile 11 - All my supporters who sent notes of encouragement, cooked dinners, sent care packages, and prayed for me and my family.  I know that there were many churches praying and people I've never even met praying.  Thank you.
Mile 12 - All Christians and non-Christians
Mile 13 - Okay, another prayer for me to give me the strength to make it past the finish line

Tomorrow Is My Fight Song

I turned this song up in the car and started belting out the words.  Tears started to stream down my face, which made me sing even louder Just FYI, when I sing, it sounds like a cat is getting violated!  I know many of you know this song.  It's been an anthem for me since the moment I first heard it.  

• All those things I didn't say, Wrecking balls inside my brain: Was cancer going to win?  Can I do this?  I'm going to fight it, but it's going to be tough.  Why me?  
• I will scream them loud tonight, can you hear my voice this time: Dear cancer.  I WIN!
• This is my fight song: My one year cancerversary is tomorrow.  And I will send cancer out by finishing 13.1 miles.  I am stronger than ever.  A hell of a lot stronger than my cancer.
• Take back my life song: I won't let cancer consume me (literally or figuratively).  Will be the best me possible and I will be there for my family.  Again, I WIN! 
• Prove I'm alright song: Doctors are still making me go through lots of tests, but I know I'm alright.  Running 13.1 miles will prove that to a person. 
• My power's turned on: God is my power and has always been turned on.  I've learned I'm powerful, too.  
• Starting right now, I'll be strong: I've been strong.  And will continue to be strong.  
• I'll play my fight song and I don't really care if nobody else believes: Truth is, my amazing support system has always believed in me.  The difference is that now I believe more in myself.  Thank you cancer for allowing me to see that gift.  
• 'Cause I've got a lot of fight left in me: AMEN!  My life isn't over.  In fact, this new chapter is just beginning and I couldn't be more excited about it.  

Fight Song by Rachel Platten

Like a small boat

On the ocean

Sending big waves

Into motion

Like how a single word

Can make a heart open

I might only have one match

But I can make an explosion

And all those things I didn't say

Wrecking balls inside my brain

I will scream them loud tonight

Can you hear my voice this time?

This is my fight song

Take back my life song

Prove I'm alright song

My power's turned on

Starting right now I'll be strong

I'll play my fight song

And I don't really care if nobody else believes

'Cause I've still got a lot of fight left in me

Losing friends and I'm chasing sleep

Everybody's worried about me

In too deep

Say I'm in too deep (in too deep)

And it's been two years

I miss my home

But there's a fire burning in my bones

Still believe

Yeah, I still believe

And all those things I didn't say

Wrecking balls inside my brain

I will scream them loud tonight

Can you hear my voice this time?

This is my fight song

Take back my life song

Prove I'm alright song

My power's turned on

Starting right now I'll be strong

I'll play my fight song

And I don't really care if nobody else believes

'Cause I've still got a lot of fight left in me

A lot of fight left in me

Like a small boat

On the ocean

Sending big waves

Into motion

Like how a single word

Can make a heart open

I might only have one match

But I can make an explosion

This is my fight song (Hey!)

Take back my life song (Hey!)

Prove I'm alright song (Hey!)

My power's turned on

Starting right now I'll be strong (I'll be strong)

I'll play my fight song

And I don't really care if nobody else believes

'Cause I've still got a lot of fight left in me

No I've still got a lot of fight left in me

My shirt for the race

My running partners, Carrie and Whitney.
These ladies are amazing and I am so thankful for them.  We've logged a lot of miles and have also logged a lot of real, genuine conversations in the process.  So glad I get to do life (and a half marathon) with you ladies! 

A Quick Look Back

Not the best picture of me, but it was actually a great memory...

A year ago today, we checked into the hospital for what we thought was a prophylactic mastectomy.  Little did I know this would be the start to a hard, life changing year.

Richard always has a way of making me laugh when I am stressed.  Here, we are nervously waiting to get called back into surgery.  This is a picture he sent out with the caption "Bye everyone, we are at the airport headed to Cancun!"  Oh, I only wish!  

Honey, I'm still waiting for that trip to Cancun! 

My Feelings About Pink

It's October.  In case you are blind or live in a cave (which would make reading a blog difficult) there is pink everywhere for breast cancer awareness month.  Pink cereal, t-shirts, water bottles, panties, mens boxers, NFL referee whistles.  There are cute, clever saying: Save the Tata's, Saving Second Base, Check Your Rack, Save the Girls, etc.  Breast cancer awareness feels incredible trendy and a great excuse to talk about boobs.  The merchandise is cute, pink, girlie, sparkly.  And I love that awareness is being brought to the cause.

I'm reminded of when I had my mastectomy, Richard showed up wearing a pink t-shirt.  I hadn't been diagnosed with cancer yet, but I remember laying in the hospital and seeing him walk in wearing that bright pink shirt.  He looked incredibly handsome.  It was his way of supporting the difficult decision I made to mutilate my body protect myself.

With that said, I have a bone to pick with all the pink.  Cancer is a bitch.  It's not all pink/sparkly/funny.  I suspect the nice, pink message is helpful because if they showed what breast cancer really looked like it would scare people.  It's lonely.  It mutilates your body.  Weeks after surgery, you literally have tubes hanging off of you like tentacles that collect blood, puss, and something stringy (I never did figure out what that was).  If you are lucky enough to keep your nipples, they turn black.  You new boobs, look perky on the outside, but there are scars and they are constantly cold (there is no body fat or tissue to keep them warm).  Chemo is ridiculously harsh: mouth sores, sweating, diarrhea, thrush, vomiting, nose bleeds, incontinence (that's when you shit yourself), weight gain, nails falling off.  I was lucky enough to not have to have radiation, but I know with that can come serious burns.  Those are just the physical effects of cancer, which are actually much better compared to the emotional and mental effects of cancer.  None of it is a pretty picture ~ and it certainly can't be wrapped up and tied with a pretty pink bow.

Again, I don't at all mean to discount the awareness that all the pink brings.  I love that women are encouraged to do self breast exams and mobile mammography units are parked outside of workplaces.  However, the cynical part of me, wonders how much does do pink merchandise sales actually go towards breast cancer prevention/treatment and how much of it is a marketing ploy to get you to buy something pink so you feel good, thinking you are helping a cause, when in actuality you are just getting duped into buying a pink trinket that you really don't need.  While I am absolutely sure the intentions started out very pure, it irritates me that some companies are likely using pink to promote their supposed support of breast cancer as a cover up to just get you to buy more stuff.

Signed,

Cynical Julie

Note to Self: Get Your Funny Back

I've not been sleeping well.  I'm not sure what is causing my restlessness.  Perhaps its that once I do fall asleep, I wake up 2 hours later and feel the need to make myself a full blown meal (it's called entitlement eating).  Or that our 5 year old, who used to always sleep in his own bed, has started sleeping with us (which for the most part I love) or that before bed my husband takes both of the good pillows for himself.  Any who, I couldn't sleep and started rereading my blog from the start.  A few thoughts:
1.  It's been a hell of a year.
2.  I've forgotten a lot of the stuff I've written about.  Sure there are those things that stick with you, like the time I shit myself after chemo, but I've forgotten a lot of it.  Glad I have it documented (mostly).
3.  I used to be funny...  Note to self: Get your funny back, Julie!

It's My Hyster-versary!

Happy Hyster-varsary to me!  A year ago today, I had a prophylactic hysterectomy after finding out of my BRCA1 status.  There have been a few occasions when I've gotten sad about not having the option to have more children, but for the most part, I still feel really good about my decision.  Having had several friends have babies over the last year has helped; I can get my baby fix any time I want.  And, I can wear white any time I want (yes, I'm even sporting it after Labor Day).  And no more periods. And, since I had my hysterectomy, I'm getting to skip 5 years of hormone suppressing therapy due to my breast cancer.  Bonus!

I'm reminded that His plan is what's best for us, even though it isn't our plan.  Several things aided me in discovering my breast cancer; Of course, at the time, I didn't know how things would line up, but looking back, I can absolutely see His plan.

First I discovered I was BRCA1 positive.  Then, decided to undergo the hysterectomy, as ovarian cancer was what had haunted the women in my family for decades.  After the hysterectomy, I started  hormone replacement therapy.  Even though my cancer was not estrogen fed, the HRT caused my lump to become more prevalent.  Without that lump becoming more prevalent, I likely would have chalked the lump up to hormonal changes.  I would have accepted the erroneously false negative mammogram that said I was in the clear.  I would not have pushed to undergo the prophylactic mastectomy.  The aggressive cancer would have grown.

The take-away:  All these things were tough.  Waiting for the testing result was tough.  The decision to not have more children was tough.  Surgery was tough.  But, WE CAN DO HARD THINGS.  He leads us through hard things to prepare us for something down the road that He can see and that we cannot.

Counting my blessings tonight. As a football is whizzing past my head as I type this.  And the Chief's are blaring on the tv.  I wouldn't want it any other way.

Thoughts During Treatment

Work has started back up for me and I don't have much time to write. But, I did want to quickly write this down, as I keep this blog not only to educate others about the walk, but also to document my own journey.

A few days ago, I had another treatment.  They told me I only have 3 more to go (yay!).  As I'm sitting there hooked up to the IV poll, I look around and get a lump in my throat.  I'm the youngest person on chemo-row (the treatment room is set up with probably 25 recliners all in a row) by about 30 years.  The woman next to me is struggling.  She has a walker and hooked up to an IV poll.  Her obvious wig is all askew. She is trying to get the attention of one of the very busy nurses to help her make her way to the bathroom.  (I so badly want to help, but I'm plugged in and hooked up to my own IV poll, so I know I will just be in the way.)  She appears to be confused.  She's at treatment alone. It's absolutely heartbreaking. 

Another gentleman on chemo-row is getting treatment for a brain tumor. I overheard one of the chemos he is taking and I know it's going to be a rough couple of days for him. His wife says he's been battling this brain tumor for 15 years. 

Another woman, who is in a local Facebook group for women with breast cancer, is struggling.  She says the doctors tell her there is nothing left to do.  How do you wrap your head around that?  Do you admit defeat and vow to enjoy what time you have left? Or, do you keep on fighting, praying for a miracle, even if that means you spend precious hours on chemo-row and recovering from the assault chemo does to your body.  The quality of life for these individuals appear to be dwindling and where are they spending their time?  Getting treatment or worrying about this God awful disease.  

I know of another local mother who has young children.  Her breast cancer metastasized to her brain. How do you explain that to young children? Or even your husband who has to consider what life would be like without you?  You can cut off your breast, but not your brain.  That is a whole new level of Survivor.    

As the tears started to fall, my nurse came over. (God bless cancer nurses! All of mine have been amazing!) She looked into my eyes, handed me a tissue and held my hand.  Tears started to flow even harder.  All I can muster up through my tears and sniffles is "It isn't fair." She could see exactly what I saw and didn't need me to explain.  

I feel so out of place.  I think to myself "I don't belong here" but then I remember I DO belong here. I'm sitting on chemo-row, getting the same kinds of treatment these folks are.    I'm no different from them.  That is a scary thought! We are all trying to be Survivors, some of them are just having to fight harder than I've had to.

And that's where the guilt creeps in. When I leave, my plan is to get home and run, I can literally skip out of there if I want (and I just may after my last treatment).  The folks sitting next to me literally struggle to walk 10 feet to the bathroom.  My fight is almost done. His fight has lasted 15 years and no end in site. Who knows who will help her when she is feeling sick and exhausted from her treatment.  At times, I feel on top of the world, and then there are times where I feel so guilty for being spared with a treatable cancer that was caught relatively early.  

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.