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.  

Chemo #6 - Chemo is tough, but I am tougher.

As we made the drive to the Hulston Cancer Center, Richard and I were reflecting on the first time we made that drive just over 4 months ago.  We were in disbelief that we were reporting for chemotherapy.  And today, we were in disbelief that we were reporting for our last chemotherapy.  We made it; The fight isn't officially over (I'll have infusions through November and another reconstruction surgery and at some point they will need to remove my port), but we finished the toughest rounds.  I do have a sick week ahead of me, but knowing it will be my last sick week makes me giddy.  I can handle anything just one more time.  

All smiles on his last day of chemo!  

 Around 10:00 this morning, while we are checking in for chemo, my phone starts to blow up with emails and text messages.  Richard (along with my friends Shavonne, Brian, Maria and my Mom) had arranged for people to send messages of encouragement all at once.  It was amazing.  And it made me cry.  I've said it before, but I'll say it again: I am surrounded by some amazing friends and family.  

Richard's excited about it being our last day of chemo, probably because he thinks he'll get out of taking pictures with me.

Mason was excited too...  This kid has made a lot of sacrifices during this time.  He probably isn't even aware of the sacrifices he's made.  But Richard and I are and we could not be prouder.  Team Moss: One team, one dream! 

Bummer that most of my important counts were on the low end of the scale.  But, not low enough to keep me from finishing this final round.  My body is tired.  It's struggling to put up with the stress we've put it through the past 4 months.  It definitely fights back after my treatment in a barrage of side effects.  Chemo is tough, but I am tougher.

Our final waiting room selfie before we start round #6.  Can't you tell how excited Richard is? 

Me as they are disconnecting me from the infusion machine.  I was choking back the tears.  Can't believe this chapter is nearing an end.  I'm so excited.  And proud.  And honestly, a little scared.  But overall, they were very happy tears!

I did it!  6 rounds with poison getting pumped through my body.  

A family picture right before I ring the bell.  It meant so much to me that Mase was there.  

Me ringing the bell.  Ringing the bell signals the end of chemo and is a tradition at most cancer centers.  

What meant the absolute most to me was that my family showed up to ring the bell and cheer me on! The support we have gotten from my family and Richard's family has been amazing.  We are so blessed. 

Getting cheered on by my family meant the world to me.  Jill wasn't able to make it up from Florida, but that's okay because I booked Mason and I a little celebratory trip down there.  I cannot wait to get a big hug from my sister and feel that Florida sun on my head!  

Sorry, Not Sorry

Oh my!  I just re-read my last blog entry.  I'm not sure I've ever been that angry at something in my life.  For the one person that came close: all I wanted for that girl was that she has bad teeth and bad acne, and frankly I don't even wish that on her anymore.  I'm not sure I've ever hated anything in my life.  Sorry... Not sorry.

I hope no one found my last post offensive.  I considered taking it down once I read it in a more relaxed head space.  I used some strong words.  But, the truth is I was feeling some very strong feelings.  I've decided to leave it up, because it was what I was feeling at the time.  Those feelings are part of my cancer journey, and the entire purpose of this blog is to document that journey ~ the good, the bad and the ugly.  Feelings can't hurt us (unless perhaps we keep them bottled up inside).

It's such a fine line to walk, this journey.  I certainly don't want to portray myself as being a victim.  I'm incredibly blessed.  Cancer is bad, but it's not the worst thing in the world.  I try to be positive, because that's who I usually am.  Let's be honest, it's happened and my having a bad attitude isn't going to change that.  Might as well be positive and make it as bearable on myself and others as possible.  But, I don't ever want to give others the wrong idea that it is just an 'inconvenience'.  It's much, much more than that.  It's totally okay to be angry.  And it's okay to laugh.  There are no rules. Just moments.  Some moments are just harder to get through than others.

Happy to report I am in a much better place today.  I feel better physically.  I feel better mentally.  I feel better spiritually.  Thanks for the prayers and words of encouragement, everyone!

Off to enjoy the day with my sweet kiddo.  Reminds me of a tear filled conversation Richard and I had last night:  Cancer is a family disease.  My family (Richard, Mase, The Gillispie's and the Snyder's) has battled cancer, not just me.  They've had to pick up the pieces.  They've had to watch someone they love hurt.  They have made tremendous sacrifices.  They have cried themselves to sleep.  They have worried themselves sick.  We know our family is capable of handling this, although we certainly wish they didn't have to.  Our heart especially break for our sweet Mason.  He's watched far too much tv and played way too many hours on the iPad because mom just didn't have the energy to get down and play with him.  He's had to miss out on sports opportunities because we just couldn't commit to attending practices and games.  We've been distracted, and much of that distraction has been at his expense.  We decided a family date, complete with a trip to Toys R Us is in order once this last chemo cycle is over.  Cannot wait to celebrate as a family!

Love is in the air!

So, today was Valentine's Day. Since I knew I would be in 'recovery week' to say my expectations were low would have been a massive understatement.  I was going to consider the day a success if I could brush my teeth, shower and not shart myself.

Surprisingly, today ended up being the best Valentine's Day of my life.  Of. My. Life.  I'd love to tell you that my husband planned something extremely romantic and elaborate (which he has absolutely done in the past) - but he didn't.  Which is exactly what I wanted.  Low-key was what my heart desired.  

Last night we watched a Redbox and had cheesecake at midnight.  This morning, we had bagels and coffee for breakfast and watched Mase open a small Valentine's box we made him. It's insane how excited a boy can get over a couple of chocolates, balloons and Lego figurines.  Then the three of us sat around the table for nearly an hour just playing around, laughing and watching Mase put together his Lego people.  

Next, Richard and Mason worked out in the basement, while I put in my Beats and de-cluttered a few spots of the house (de-clutter = throwing away crap toys behind Mason's back).  Oh, the sweet feeling of productivity after being sick as a dog the past few days (yes, I was happy that I felt well enough to clean!).  

After a bit, we decided to load up in the Jeep and go for a drive.  We ended up at Chic-fil-a in Jeff City for a late lunch, where Mase played for nearly an hour in their playland.  Then, we took the scenic route home (like miles and miles of dirt road) where Mase 'drove' for a couple of miles (don't judge!).  He felt like such a big kid and you could see the confidence beaming off of him.  As I'm listening to Mason giggles and Richard coach Mason on driving, I see the most breath taking pink and purple sunset.  All is right in the world: My little family and I enjoying time together on a quiet dirt road, admiring God's amazing work in a beautiful sunset.  

The memory reminded me of being a kid, piling in my Dad's brown Jeep with the top down and going for a drive with the top down.  Oh, and we would always stop to get the biggest bag of peanut M&Ms to pass around.  Typically, those family Jeep rides usually ended in tears because someone either ate too many M&Ms or banged their head on the metal side bars of the Jeep.  Almost on cue, today's Jeep ride also ended in tears because we wouldn't let Mase have a puppy that he saw barking at us from the side of the road.  It was a full circle moment and it was perfect. 

Today wasn't about flowers, candy or any of the other commercial Valentine's Day hoopla, it was about pure and simple family LOVE.  

Redbox: $2

Cheesecake: $4

Bagels: $4

Chik-Fil-A: $16.78

Gas: $14

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Simplicity, gratitude, full-circle moments and total contentment: PRICELESS

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!  

She Understands

A few weeks ago, my cousin, Athena, sent me The Velveteen Rabbit by Margery Williams.  I didn't know exactly why she was sending me this children's book.  Anyway, with all the craziness of cancer and Christmas, I put it in my bookshelf with all the other books I have planned to read and never gotten around to it and vowed to read it later.  Athena and I hadn't spoken in years, but she reached out to me after my cancer diagnosis.

A bit about my cousin Athena.  She is... A-MA-ZING!  She's brilliant, to the point where I'm intimidated talking to her.  In fact, I often have to google words in her email to find out what they mean.  She's independent; after she graduated college she moved all the way to London to pursue her dream of writing and acting.  She's hilarious.  She's drop dead gorgeous with her hourglass figure, bright blue eyes, and long, stunning, fiery-red hair.  She's accomplished, even given a TEDx Talk you can view by clicking here.  If you've got 15 minutes, watch it!  It is incredibly inspiring and worth your time.  She's immensely talented.  She's accomplished more in her professional life than I ever will.  She's feisty and a bit of a smartass ~ she comes by that honestly because it is a highly inheritable family trait.  Basically, she's a badass bitch (and she knows I mean that as the highest compliment possible!)  And, she has some challenges in her life that most of us can't even imagine (she happens to have been born with cerebral palsy).  If you wish to learn more about Athena, check out her website or her blog Never Walked in High Heels.

So in all my whining, cursing and feeling sorry for myself, Athena emailed me to offer comfort.  I've got to say, I was embarrassed.  Here I was complaining about my temporary hair loss and my year full of doctor appointments and discomfort and she has faced far greater struggles on a daily basis.  Although don't tell her that ~ she doesn't want pity.  She is more self sufficient than I will ever be.  If I had half of the balls determination she has...

I have another chemo treatment on Monday.  Honestly, it's been hanging over my head throughout this Christmas season.  I'm dreading it!

Before I go into chemo week, I go through a 'nesting' period, where I try to be really productive and prepare for my down week.  I was cleaning out my office, and stumbled across my pile of books that I have good intentions about, but most likely will never read.  Sitting near the top was The Velveteen Rabbit.  It's so unlike me to stop in the middle of a task to sit down and read, but something pulled me to open the book up and start reading.  The following excerpt really stuck with me:

"You become {Real}. It takes a long time.  That's why it doesn't often happen to people who break easily, or have sharp edges, or who have to be carefully kept.  Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby.  But these things don't matter at all because once you are Real you can't be ugly, except to the people who don't understand."

I couldn't have read this at a better time.  Just last night, after the hustle and bustle of Christmas was over, I went to bed and had myself a good cry.  I miss my sister.  I hate cancer.  I fucking hate chemo.  I dread feeling sick.  I'm so over it.  I hesitate to even compare our situations.  My struggles are temporary, her's are permanent.  But, I feel like she is one of the few people who truly gets me at this time in my life.  She knows all too well about being self conscious about her appearance because of something beyond her control.  She knows what it is like to be jealous of people who take seemingly mundane things for granted.  She knows what it feels like to have people stare.  She gets that our health can be both a blessing and a curse.  SHE UNDERSTANDS.

Love you Athena!  Even from London, you knew exactly what I needed and sent it when I needed it!

Just Checking In

Hi all!  Just checking in.  I haven't written in over a week.  Some of you have messaged me to check in, thank you for your concern.  The truth is, I haven't written in awhile because I have been feeling so darn good that I've just been enjoying life.  I've enjoyed spending time with friends and listening to little ones run around a friends kitchen while we finish a craft the kids gave up on in 2 minutes.  I've enjoyed dinner with the girls and some uninterrupted grown up conversations.  I've enjoyed playing Lego's with Mason.  I've enjoyed some quiet time and a few date nights with the hubs.  And, this weekend, I enjoyed being surrounded by the Moss side of the family and hearing the kids sing Happy Birthday to Jesus.  And Mase having a sleepover with his cousin at his Nannie and Poppy Snyder's house.  Oh, the sound of two little boys giggling at 11:00pm when they are supposed to be going to sleep ~ it was music to my ears and honestly brought tears to my eyes.  We are blessed.  And I've always felt blessed, but even more so this Christmas as we celebrate with family.  Life is good.  God is great.

Lots to celebrate!  So thankful for this guy!

Mase is ready to dig into the presents.

My handsome kiddo

Time Thief

Cancer is a time thief.  I'm not trying to be philosophical or deep.  And, I'm not talking about it taking someone far too early, although I know that does happen.  I'm talking about the amount of time spent on doctor appointments, travel, tests, setting up childcare, researching chemo side effects, tracking medical bills and insurance, worrying about losing my hair, looking for hats to keep your head warm, trying to plan for chemo's 'sick days', etc.  It. Is. F'n. Exhausting.

On another note, I have no idea how my sweet husband deals with all of it.  And works, like a lot.  I have to say I have been supremely impressed with his employer, Lowe's.  They have been beyond accommodating through this shit storm season.  Over the past two months there has been literally dozens of appointments and he has not missed one.  He has been there every minute of every appointment.  Every needle stick.  Every phone call.  Every tear.

So, today was a much needed, relaxing day at home.  No appointments.  No travel.  No waiting on tests results or phone calls.  No shuffling and saying goodbye to the kiddo.  Just me and my sweet little family doing things that normal people do on the weekends: laundry, attempt taking a Christmas card photo while I still have hair, naps, playing, snacking, dinner with friends, etc.  Just a pretty normal day.  And it was exactly what we needed after a month that has been anything but normal.

So... we got our 'normal' holiday photo...

Silver Linings

Okay, I'll be the first to admit, this cancer thing blows big time!  These early morning hot flashes aren't fun.  I'm so scared of chemo and all the side effects of it.  BUT, there are always the silver linings:

• Such as Richard and I both being up at midnight and doing a number on all the carbs in the kitchen pantry.  Making memories pigging out at midnight.
• The cancer card trumps just about anything.  I try to use it sparingly, but let's just say this girl gets to take as many naps and rest breaks as she needs.
• My family drove 6 hours to hang out with me for 3 hours.  This cancer thing has changed my family ~ in a good way.  I think we have all been reminded that life is precious, so is family.  
• I have fallen in love with Richard even more every day.  His strength has been comforting and inspiring.  He's shown me that he and Mase don't need me, which is oddly comforting.  But he has also shown me that they want me and that feels great.  Cancer has shown me that my marriage is strong.  And I know it will only get stronger.
• Went to Springfield today because I had a drain issue (fun times!) and I got to have an impromptu lunch with just my mom and my sister.  That never happens! 
  
• I'm humbled by the number of people praying for me and my family.  A lot of those prayers are coming from people I don't know and whom I've never met.  Some of those prayers are coming from the last person I would expect them from... And that is surprisingly comforting.  
• My walk with God has grown over the past year, thanks for some amazing women in my life who support me and also lovingly challenge me.  It's easy to reach out to God in the good times, but I had not had my faith tested to know if I would turn to him in times of darkness.  Well, challenge accepted.  Now, more than ever, I know God has a plan and is in absolute control.  I know He gives us strength when we turn to him.  And that is something that I will continue to carry with me long after this battle has been fought and won.  
• I'm thankful that my cancer and node dissection was on my left side and not my right.  Ouch!  But since I'm right handed, it could have been way worse!
• I just reached my goal weight!  Sad, but true.  Thanks cancer!  And, it's even been suggested I consider adding a few pound prior to chemotherapy.  Who wants a chili cheese dog... Or two?  Me! 
• Hey!  When you don't shave your legs for 2 weeks, the hair actually turns soft!  Gross, I know. Don't judge.
• Thankful that I have been able to reach others... Little old me.  I'm not special, I certainly am flawed, but I know my story has encouraged others to get tested.  To pray.  To recognize the blessings.  And that is HUGE!  I know this cancer thing is bigger than me.  I don't know how, but I know great things are going to come from it!  

Never Too Old to Need Mom

Since all these surgeries began, Richard and I have been so blessed that our Mom's have been there with us!  Whether it be waiting in the waiting room for hours on end waiting for me to get out of surgery, keeping Mase entertained, the house maintained, our Mom's have been there every step of the way.  Our mom's have seen us both at our worst, when we are tired, crying and broken.  They have also witnessed that our marriage is strong and that we will conquer this battle as a family.  They laugh with us when we feel like laughing and they cry with us when they see us hurting.

Val, my mother-in-law stayed with us several days after my mastectomy.  She was a huge help to both me and Richard, and of course Mase had her wrapped around his sweet little finger.  She was here when we got the cancer call.  I will never forget that.  She was her usual calm, steady and faithful.  She kept Mase busy so Richard and I could have some time to process the weight of the information that we had just received.  She never shuttered when she saw my scarred up body.  Never gave me a disapproving look as I navigated this crisis without estrogen (and admittedly sometimes without grace).  Not once judged me for using the word 'clusterfuck' in my blog... In fact she thought I made it up.  I wish!  

My mom came up to watch Mase for my surgery on Thursday.  She was supposed to leave today.  This morning, she came and laid down in bed with me and held my hand.  The thought of her leaving scared me and I told her I wasn't ready for her to leave yet... So she just looked into my dazed tired eyes and said "then I won't leave yet."  I know she had commitments back home.  I know she had been away from my dad for several days.  She didn't even hesitate to offer to stay longer and that  meant so much to me!

I know both of our mom's have obligations at home, yet put those aside because we weren't ready to let go yet.  One of them have been here since this whole journey started 10 days ago.  I dread the day things return to 'normal' and we don't get one of our mom's here.  They bring so much to our lives just by being the strong, caring, loving, nurturing women they are.  Sure do love you Mom and Val!