An Update

Just thought I would share a quick update...

To be honest, a few days ago, I was really down.  Cancer is hard (okay, that is a massive understatement), but you know what else is hard?  Transitioning back to "normal" - whatever that is.

I really looked forward to my exchange surgery, where the take out the rock hard, uncomfortable tissue expanders and put in soft, round implants - while I still have treatments, in the breast cancer and tissue expander world, the exchange surgery is often viewed as crossing the finish line.  I thought I would come out of the surgery skipping (okay not really skipping, as exercise isn't encouraged yet) and euphoric.  I mean after all I had been through, it was going to end with perky breasts, right?  What girl doesn't want perky, youthful breasts?

Well, I got perky, youthful breasts (my husband even called them a 10, minus the black-blue-yellow-greenish bruising).  And guess what: I still had a bout of depression after my surgery.  For so long Richard and I have had to FIGHT for my life.  Now what?  It's certainly a blessing, but an odd feeling none the less.  The depression has passed.  For now.  I suspect it may come back...  And that's okay; I've been through a personal war.  (Side note: I would imagine this is something similar to what our veterans face, although obviously on a different scale... it's not easy.  Thank you for all of you who have served!).

Okay, so for some good news:

• My pathology came back from my exchange surgery all clean!  If you didn't know that they were sending more tissue off to pathology after my exchange, join the club.  I didn't either.  I knew my surgeon was going to shave a bit more off my chest muscle to help create a bigger margin, as one was very close.  Blissfully stupid of me, It hadn't even dawned on me that there was a chance the cancer could still be present in my body.  The surgeon told Mom and Richard that he was sending it off to be checked and apparently they decided it was best not to tell me that.  Well played, you two.  They knew the results were going to come in a week and wanted to spare me the week of worry.  I damn near cried when the nurse announced my pathology was clear: both because I was oblivious obviously relieved and also because Richard and my mom choose to keep that burden to themselves, and protect me from it.  Thank you.  
• My energy keeps improving.  We stay very busy with playdates and shuffling around town to school and soccer practice.  The beautiful weather helps, too.  
• Hair is starting to come back everywhere.  I even had to shave the other day (I haven't done that in months and gotta say didn't miss it one bit!).  I am getting a hair line; Think a man's 5 o'clock shadow, but on my head.
• Eye lashes are also growing back, and not just a few, a whole row of them.  Right now they are about a millimeter long, but it's a start!  
• After some inspiration from some great friends, I've really tried to clean up my eating.  So far, I've lost 4 lbs! 
• My breasts...  They are a 100% fake, but they aren't trying to kill me.  And, as a bonus they are  90% fabulous (Richard would probably even rate them higher), even more amazing considering what they have been through.  They will take some time to get used to.  It takes months for them to 'drop and fluff' and do their thing.  But, my surgeon did an AMAZING job!  Ya'll ~ I had the DREAM TEAM of medical professionals!  If you are in the Springfield, Missouri area and need recommendations, please hit me up!!!  These guys are a amazing!  (Side note: Richard tells me he's seen a lot of breasts and felt an undisclosed number of them, so he's pretty much has an expert opinion).  

Off to enjoy the beautiful day...  Gentle hugs everyone (oh, hugs are way better without those blasted expanders, too!).  

It's Mom's Turn

It's been awhile since I've written a post... Sorry not sorry.  The truth is I've been too busy LIVING to sit down and write.  And I know all of my cheerleaders are so happy to hear that.  The past week, we've had 65-75 degree days, so Mase and I have been busy with park play dates, climbing rock walls, flying kites, playing pirate ship and anything else we can manage to do outside.  Oh, the feel of sun on my scalp is amazing!  *Note to self, put sunscreen on my pale, bald, head.*

This past weekend I went to Mom's and Mase and Richard had a guy's weekend.  Last week was Mom's turn to have her bilateral mastectomy.  As a reminder, Mom also is a carrier of the faulty BRCA mutation. To be honest, she should have been the first one to have her mastectomy, as the odds certainly aren't on her side (statistically she has an 87% chance of developing breast cancer by the time she's 70).  But, she insisted Jill and I have our surgeries first, even though she is at greater risk of developing cancer due to her age.  What an absolute blessing her selflessness turned out to be - my cancer was very aggressive and just waiting a few months would have made things much worse.  She didn't think twice about holding off on what she needed to make sure my sister and I could do what we needed.  I can't thank you enough, Mom! Please join me in praying she gets a clean pathology report... Honestly we are all waiting; Holding our proverbial breath for the pathology report, which should come in any day now.  Mom really is struggling to even take a breath - honestly it's difficult to even take a deep breath after a mastectomy.  Mom, it gets better, I promise!

As I was tending to mom this weekend, I had a roller coaster of emotions.  A mastectomy is not an easy surgery; It's physically hard and emotionally even harder.  To purposefully scar up your body in hopes of avoiding something even worse (cancer) is a hard decision.  Do you roll the dice and take the chance of being the lucky 13% who won't develop cancer?  Should you leave well enough alone? It's a tough call.  I also found myself joyful that Mom had done everything she could to reduce her risk.  She has done all that she can do, and there should come some relief with that (although the real relief will come after the path report comes back all clear).  Also, it felt good to just lay in bed with her or wake up and have ice cream at 2am together, as she had done with me so many times over the past 6 months.  I know she didn't need me, Dad had everything under control, but I also know it isn't always about what you need, it's about what you want.  I remember telling mom I didn't need her (Richard had everything under control), but I wanted her.  Sometimes you just need your mom... Or daughter.

Honestly, for our family, it is the easiest, most difficult decision ever. My mom was 8 years old when her mother died of ovarian cancer (another BRCA related cancer).  Her mother was carrier of the BRCA mutation, although of course it wasn't known back then.  Mom knows the pain of losing a parent.  Of wishing her mom could see her graduate, be there on her wedding day, or when her kids were born.  She doesn't want her time cut short with her family or grandkids.  She was robbed of time with her mom due to BRCA and she's determined to not let that happen for my brother, my sister or I.    I know the decision she made was about being there for us, because she didn't want us to go through what she had to when she lost her mom.  Again, thank you Mom!  We still need you!  God knows I still need you!

UPDATE: Mom's pathology report came back all clean!! Praise the Lord!! Can't wait to celebrate Asa family!

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!

It's Okay. I Have Cancer.

So, I've done A LOT a few things I'm not proud of...  So this isn't a marathon post, I will limit this list to just the last few months... Otherwise, we could be here awhile.
Truth is, when you have cancer, there are just some things you can get away with:

• Like eating a whole sleeve of Lemon Oreos.  For breakfast.  Before 8 o'clock in the morning. {Thank you chemo steroids}
• Nap for 5 hours in one day.  
• Cry at inappropriate times.
• Laugh at inappropriate times.
• Want to tell some one how you really feel when they politely ask you "How are you today?"  My mind says: "Well, my breasts were plotting to kill me, my 'new' boobs feel like whoopee cushions, I've got thrush, mouth sores and I could easily poop myself any minute."  My words say: "I'm good.  Thank you."
• Retail therapy.  Especially if mom is helping you foot the bill.  {Thanks Mom!}
• Shit yourself.  I'll spare you the details.  But, let's just say I am so thankful I was home.  And a word to any of you who may face chemo in the future: Never trust a chemo fart.  
• Totally acceptable to look at boobs on your computer or phone.  Even acceptable for your spouse to look at boobs on their phone or iPad.  For once, it's called research.  
• Wake your mom up at 2:30 in the morning because you don't want to eat Reese's cereal all by yourself.
• Gaining weight.  I blame it on the steroids.  But truth is, a lot of it is that at this point I just don't give a flip.  I'm sure (at least I hope) my attitude changes once my treatment is over, but for now, I find comfort in anything carb-y and salty.  

And a few things you shouldn't do if you have cancer:

• Blame yourself.  During infusion #3, there was a newbie sitting next to me.  She was probably in her mid-60's.  She shared with me that she has lung cancer.  Then, she hung her head and said she had been a smoker for years.  My heart broke, cancer is bad enough without the self-imposed guilt and shame.  NO ONE deserves cancer.  I can assure you, if there was some sort of cancer caused by binge eating carbs, I would have it.  And even then, I still wouldn't deserve it.  Her statement made me realize that I got one of the 'lucky' cancers that come with lots of resources and research funding, financial support, and pretty pink ribbons.  Instead of a big pink ribbon, a lot of cancers come wrapped in a bag of stigma.  Melenoma?  You must have spent too much time in the sun or in the tanning bed.  Liver cancer?  Clearly you drank yourself into that mess.  Lung cancer?  You were dumb and smoked cancer sticks cigarettes, despite all the warnings.  
• Google anything cancer related.  It will scare the shit out of you... (which isn't as quite out of the realm of possibility as it used to be).  
• Use it as an excuse to be mean to your spouse.  For the most part, I feel like I've been pretty nice to my husband during these times, admittedly not exactly the kind of nice he is probably wanting, but I plan to talk to my doctor about that, but on occasion I've taken out my frustration on him.  He deserves better.  Cancer is a family disease.  My job is to take care of myself and not poop myself.  His job is everything else, the biggest which is being the sane and stable voice of reason in a crazy season.  I fall in love with him more and more throughout all of this.  
• Clean.  Life is too short to spend time cleaning.  This has always been a philosophy of mine, now I just finally have a way to justify it.  

Signing off now... Those Oreos aren't going to eat themselves.  

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!  

Say Cheese!

I've avoided pictures...  Really, who wants a picture when you aren't looking your best?  And let's be honest bald isn't exactly the look I was going for, but it is exactly the look I have.  A few months ago I read this piece called The Mom Stays in the Picture.  The biggest thing I took from this post is that we all take different things from a picture.

Here's an example:

Mom and Mason making cinnamon ornaments.
December 2014

I'm the first to admit, this isn't a great photo... But I love it.  I showed it to my mom and she did the typical response a lot of us are probably guilty of: I look old or fat or fill-in-the-blank here.  When I look at it, I see none of that.  I remember beaming with joy as my mom did a project with Mason that she used to do with me when I was younger.  As I took this picture I soaked in Mason's enthusiasm and the pride he showed in his project.  I listened to my mom and Mason laugh together and create together.  Does it get any better than that?

So today Mason wanted to take a picture and send it to Richard while he was working...  We did that and I cringed at my big old bald head... And then I remembered the article about when kids look at pictures they don't see our imperfections, they see our hearts.  

I pray that one day Mason and I will look back at this and not cringe over my bald head... Instead I hope he sees a growing-up-too-fast four year old who wanted to cuddle with his mama.  

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. 

Giving Thanks

Tomorrow is Thanksgiving.  To think about what a tough month it has been you would think it would be difficult to find thankfulness in my cancer diagnosis.  No, I'm not thankful for cancer.  But, I am thankful for some of the things my cancer diagnosis has shown me:

1. My husband will love and support me through thick and thin.  He has been A-MAZ-ING though out all the surgeries and treatments.  He's never gotten upset me with me and has been 100% supportive every step of the way.  I know it hasn't been easy on him.  It's got to be tough to see your wife go through the things I've been through, all while holding down 'the fort' and working.  He knows when to make me laugh, and when to allow me to cry.  So grateful for him!
2. My family pulls together.  As we all get older and start our own families, it's easy to get busy and not make time for each other.  I'm perhaps guilty of this more than anyone.  But, it's been awesome to see my family pull together to support me thought this journey.  
3. My in-laws are the bomb!  Again, so supportive of our little Moss family as we battle this thing together.  
4. My friends are top notch.  Confirmation that God puts us where we are supposed to be.  A year ago, we had just moved to Lake Ozark and barely knew anyone.  In fact, we were devastated we were moving away from every thing and every one we were familiar with.  You can read about that story here in the post "Where's Our Faith?".  No doubt God knew what we would need - and as always He provided.  Our friends have carried us through the past several months through support and encouragement.  It's humbling.  I don't deserve the caliber of friends I have, but I'll take it!  Love you ladies more than I will ever be able to tell or show you!
5. Life is precious.  Do not take tomorrow for granted.  I'm lucky enough that my cancer is treatable.  Not everyone is so fortunate.  Each day really is a gift.  I know it sounds cliche, but it's the truth.
6. Humor and faith are the best medicine.  Speaking of medicine, modern medicine is pretty fascinating/mind-blowing, too.  

Wishing everyone a great Thanksgiving!  I know we will spend it being thankful and celebrating life! Be blessed everyone!  

The Cut: Take Two. Rockin' the Bald

After chemo on Thursday and a follow-up shot on Friday, I knew my good hair days were numbered.  Generally, they tell you that your hair will start to come out in massive clumps between days 10-14.  I was feeling strong and felt ready to take the plunge.  So, I called up my good friend Brittany and made an appointment to get my head shaved on Saturday afternoon.

Some women choose to let their hair fall out on their own.  But, I'm a bit of a control freak, so that just isn't my style.  I've read that it can be quite traumatic to see clumps of hair on your pillow, in the shower, or on your hair brush.  I've heard from a few Survivors that your hair falling out actually hurts; that your head gets extremely sensitive.  And, I wanted to do the deed on my terms, when I felt strong and with Mason present so he could see mommy was just getting a silly new hair cut.

Richard agreed to meet Mason, my mom, and I at Head Case hair salon.  To my surprise, he walked out and greeted me with a big, bald head!  He knew I would need the support and didn't want me to have to go at it alone, so he showed up a bit early and had Brittany shave his head before I got there.  I was so touched... And come to think of it, I should have seen it coming.  Richard and I always call our little family of three Team Moss.  One team, one dream!  That's just who he is: we're in this together, no matter what!  The good, the bad and the ugly (I still haven't figured out which of those three categories Richard's bald head fits into yet).

I walked into the salon, gave Brittany a big hug and started to make my way over to her chair.  There wasn't a lot of time to second guess things ~ I was ready to do this!  I felt really strong, up until I looked over at my mom and saw big tears welling up in her eyes.  I'm not sure what she was thinking: perhaps pride that I was handling this so strongly; or perhaps she was just sad I was having to go through this.  Either way, I quickly wiped away my tears and made my way over Brittany's chair.  Brittany asked if I was ready and I gave her a simple nod.  On the outside I smiled my way through the shave.  On the inside, I was in shock that this was actually happening: I have cancer.  I have f#@$%&* cancer!  THIS is happening and it's happening right now!  Deep breath.  I shut my eyes and feel the clippers against my head.  It feels cool, as my scalp has never had so much room to breathe before.

I distract myself by talking to my mom, Richard and Mase.  Mase is dancing around the shop and thinks my hair looks silly.  Eventually, Brittany turns the chair and I catch a glimpse of my head in the mirror.  While it was a bit of a shock, I have to admit, it wasn't as bad as I expected.  I was still me, just with a shaved head.  Did I love it?  No, but I didn't hate it!  I looked at myself in the mirror and I remember telling myself "You can do this!"  I find myself saying that phrase to myself a lot these days...

I absolutely love Mase's face in this picture!  Sweet kid has taken all this in stride!
So blessed to be his mommy!  

My handsome little family.  

Rockin' the bald!  Thankful for a few other ladies I know who encouraged me to rock the bald.  Not sure I would have been able to do it on my own without the encouragement of a few bald beauties I know!  

Day 4: A Roller Coaster of Ramblings

Hi all!  I've wanted to keep up and have thought of tons of things to write about,  but honestly, I just haven't had the energy.  This cancer roller coaster is not for the faint at heart.  Maybe there's a common denominator (that common denominator is me and my big ol' bald head ~ more on that later) in a lot of my posts, the highs and lows of this journey are ever twisting.  To the point of nausea.

Speaking of nausea, I'm writing this at 2:40 am because I am up with achy joints, and you guessed it, the dreaded nausea which supposedly and ironically can be treated with joints.  See what I did there? :).  In truth, the nausea hasn't been overwhelmingly bad until now.  In fact, I have a couple of girl friends who seem to have pregnancy nausea that is way worse than what I'm experiencing.  Also on the topic of nausea, I just laid in bed a fucking hour trying to convince myself I wasn't nauseous, all because I was actually too tired to get up and take a Compazine or Zophran.  Yes, the nausea is such a dreaded side effect that they actually give you two drugs to combat the side effects.

That reminds me, there was clearly a distinct marijuana smell from a patient at my chemo appointment last Thursday.  Richard and I decided that it was probably one of the few doctor offices where such an odor wouldn't be considered downright offensive.  Every one is trying to make their way through this, no matter what.  And they sure as heck aren't going to face any judgement from me.  I just wished I liked pot.  The smell makes me sick.  You know the one I'm talking about...  Okay, I've got to stop writing about pot because those strong, thin muscles that are attached to your tongue are starting to tighten as I think about it.  {Gag}.

Some of you are wondering what 'this' feels like.  Here's a little text I sent out to a few of my close friends tonight:  "It's been a rough day.  I'm not in pain just achy, extremely tired and uncomfy.  I am eating and have managed to take 4 naps and a bath.  More than anything my heart is happy.  My body is sick, but a happy heart and a solid, peaceful mind is a great thing!  Still blessed.  Thanks for checking in."

Okay, now onto my roller coaster of ramblings... I've actually been keeping a short list in my phone of things I want to write about when I have the energy.

• The first one was how I laid in bed an hour trying to decide if I was truly nauseated or if it were all in my head.  
• Today was the first snow of the season and seeing Mason's face light up as the big flakes fell was damn near magical.  I will say, even though I don't feel well, there are worse things than just laying in bed, listening to your mom and little family scurry around the house and watching it snow.  
• So thankful for the time I've had with my family through all of this.  Richard has been with me every step of the way.  And so has my mom.  We probably laid in bed together for hours today.  There wasn't even a lot of talking, just a lot of hand holding and her asking me if she can get me anything to eat or drink.  For those who know mom, you know how she loves to make people feel better with food.  It probably breaks her heart that she just wants to cook me something homemade and all I want are these delicious, store bought, scalloped potatoes.  My mom isn't the 'store bought' kind of lady.  She labors in the kitchen and cooks with her whole heart.  *Mom, don't worry, I know you threw that cardboard box of potatoes in the oven with all your heart too.*  
• Damn, it's cold without hair.  Like all the time.  I literally spent my day curled up in bed, with a hat on (and an eye patch Mason thought I should wear).  To my dad, my brother-in-law Jack, Brian Blackford, and a few other guys I know, my apologies for making fun of your cold, bare, bald heads.  Just smile slightly and know that karma is a bitch and I am now eating my words!  
• Speaking of eating, I am so exhausted lately that I told my mom "even chewing seems like a lot of work."  

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!  

God Winks

Today started out a little rough.  Let's just say too much coffee, forgetting my estrogen pill this morning and too much anxiety makes for a bit of a rough morning.  Not horrible, just feeling a bit 'off.'

But, then I went on a walk (my first 'purposeful' exercise since my hysterectomy two weeks ago) with a trusted friend who shared about some of her daughter's medical procedures.  And, I ran into another friend who has to take her son to an inpatient hospital procedure tomorrow.  It was a good reminder, no matter how anxious I feel, my anxiety would be 100 times worse if it were Mase going through health struggles.  Prayers for these strong mamas!  No matter how tough this journey gets, it's always a blessing to remember my kiddo is healthy!  I got this!  God's got this!

I also had a nice conversation with my mom today.  There are so many decisions to make; so many doubts to ponder.  I came to the conclusion, that no matter what happens, everything has a way of working out.  Maybe I go through these surgeries and I would have been in the lucky pool and have never gotten cancer...  It will still work out.  Or, maybe I don't go through the mastectomy and I will later develop cancer... It will still work out.  Things always have a way of working out.

During my fit of anxious energy this morning, I decided to look for a study pillow.  I've seen several ladies on a prophylactic mastectomy website comment how helpful they were during recovery.  So, off I went to Bed Bath and Beyond.  I was so relieved when I found one.  On clearance!  It didn't dawn on me until I got home, but the only color on clearance was teal.  Teal is one of the colors for the BRCA awareness ribbon.  I've mentioned it before, but my mom calls these types of things God Winks.  Some people call them coincidences, but we believe that the universe is too big for coincidences...  I like to believe this is God's way of showing himself.  Some may see this as hokey/cheesy/corny WHATEVER!  I see it as a gentle sign that He is with me on this journey.  I'll take it!  Along with my $11 teal study pillow.  Oh... and it just happens to be National Hereditary Breast & Ovarian Cancer Week.

And now I'm crying.  But they are happy tears...  Stupid hormones.  

One Week Update

Well, I'm about one week out from my hysterectomy and I must admit, for the most part, I feel like a ROCK STAR!  Okay, admittedly, it's easy to feel like a rock star when you have people waiting on you hand and foot (shout out to my mother-in-law Val and my mom Donna!) and amazing friends who cook up delicious dinners and deliver them to the front door!

Around day 5, I switched from the hydrocodone to just taking ibuprofen.  Today, I took 3 ibuprofen this morning, but haven't had any since and I'm feeling really good.  Tired, but still for the most part very little pain.  I am taking about half a hydrocodone at night, just because I think it helps me sleep, but I may even stop doing that soon.  Or I may ration them for nights when I really need a good nights sleep.  Don't judge.

I still wear my abdominal binder (it's kind of like a girdle, but it actually feels good) at times during the day, and that is helpful as it supports my back.  The first 3-4 days were filled with bloating and a bit of cramping, but the majority of my pain has been in my back.  It's nothing that is unmanageable, I just feel my back gets tired easier than the rest of me.  Since I'm off the pain meds for the most part, I think I may try to tackle driving tomorrow.

Mason has been so good throughout all of this!  Of course, he's had his Nannie and GG here to spoil him rotten, but really, that kid has been so good about realizing that mommy can't pick him up or rough house.  A few times I've told him that mommy has boo-boos and he thinks all I need is a band aid and it will all be better.  Because when you are a kid, isn't everything made better by a TMNT band aid?!

My mother-in-law kept Mason while I was in the hospital and came home with us the first few days.  She was amazing!  I know lots of people tell the dreaded mother-in-law stories, but mine is awesome!  I know Richard and Mason enjoyed having her here just as much as I did.

My mom!  She's the cook from scratch type of mom, so she's cringing making me pudding from a box. 

My mom has spent the past few days here and has been equally as amazing.  Today, she made me banana pudding with vanilla wafers, one of my childhood favorites.  As a kid, she made the kind that you had to stir non-stop for 30 minutes over the stove.  This time I had her make Jell-O pudding and slice a banana up in there (she fully protested making it using a box pudding mix and cool whip).  I've got to say, she was right (AGAIN!) her stuff is indeed much better than the Jell-O recipe I insisted on.  No worries, I told her she could get a re-do in a few weeks when I have my mastectomy.  Oh, and hopefully she'll make me some of her amazing chocolate chip cookies then, too.

Mom was right, homemade is better.  But this will do for now.

The Big Dance

My hysterectomy was yesterday morning, here's how the big dance went down... At least the parts that I can remember:

Tuesday afternoon we drove to Joplin and stayed with my in-laws.  My mother in law hosted a small birthday party for Mase which was a great distraction!  Surprisingly, I felt relatively calm all day.  Some nerves, but it was all very manageable.  I even managed to sleep really well from 10pm to around 2:30am.  I wasn't expecting to sleep much at all, so I'll count that as a win.

Wednesday

4:00 am - I 'wake up' get up and take a quick shower, as who knows when I will get to shower next.  Poor Richard is exhausted because little Mase suckered him into sleeping on the futon so they could have a father-son sleep over.  I get dressed and quietly go in to kiss Mase on the cheek.  I'm sad.  I know this hysterectomy decision affects my entire family.  On one hand, Mase won't ever get a sibling, on the other hand, I am doing this FOR my family.  

My mom was 8 years old when she lost her mom to ovarian cancer. Her mom wasn't there to teach her all the things little girls (and grown up girls) learn from their mom.  Admittedly, I still need my mom, which I'm sure will become all too evident after surgery.  Up to this point, I've always felt sorry for my mom, but now that I am a mom myself, I cannot imagine the array of pain my maternal grandmother, Mildred, must have gone through, too.  Obviously, physically cancer is rough.  But the emotional pain of knowing your kids aren't going to have you when they need you ~ I cannot even put it into words.  The hurt, sadness and worry she must have experienced...  I literally cannot imagine.  Grandma Mildred would have given anything to have the warning.  My mom, had a full on abdominal hysterectomy complete with a big scar to prove it purely out of fear that we would end up without our mother.  She knew that pain and she wanted to protect us from experiencing what she went through.  I'm doing the same for Mason.  He NEEDS me.  And that is why this BRCA warning is such a blessing.  This surgery protects me, it protects him and it protects our entire family.  

5:00 am - Richard and I leave for the hospital.  I'm nervous and my mouth is so dry, but they've told me absolutely no food or drink since midnight, so I quickly take a few sips of water when R isn't looking.  

Pre-Op
5:30 am - Richard and I are called back into the prep room where I am told to get completely undressed and to wipe down with these towelettes and use this mouthwash that made my mouth a bit sticky.  I put on my fancy gown, hairnet, and booties and we wait...  I'm so nervous my body is literally shaking.  Or maybe the room was cold.  Probably a combination of both.  

5:45 am - A nurse comes in to start my IV.  Shit's getting real and I continue to shake.  

6:30 am - Several people come in and ask me the same set of questions.  Then, the anesthesiologist comes in to introduce himself.  I keep my composure, but now realize that was a mistake.  Pretty sure Gill got knocked out on their first meeting since she turned on the tears.  Bummer!  He's leaving and I'm still awake!  Ugh, I fear I missed my window of opportunity to get knocked out early.  

6:45 am - DHL, my OBGYN, comes in to say good morning.  He's his usual calm, confident, reassuring self.  He's the reason why we drove 3 hours to have this procedure.  It's not lost on Richard and I that DHL helped bring our precious Mason into the world, and now he would be doing this surgery so that we could preserve our little family.  On a normal day, the gravity of that would have been huge.  But, frankly I quickly push that thought out of my head because I'm at maximum crazy capacity.  Still shaking.

I couldn't figure out how to get my hair net on.  

Don't hate me because I'm beautiful!  

7:15 am - The nurse anesthetist comes in to introduce herself.  I like her.  She doesn't seem much older than me and appears confident and reassuring.  She offers me a little patch to put behind my ear that would cut down on nausea should I have any.  I hear someone in the hallway say it's time to roll.  Tears start flowing and Richard leans over to kiss me good bye.  I know it must have been so tough for him to leave me as I was crying.  I know if he could trade places with me, he would in a heartbeat.    One of my biggest fears was seeing him walk away.  I was hoping I wouldn't be awake for that moment.  But, it happened and I survived.

Surgery
My gurney gets pushed through several rooms and corridors.  We arrive in the operating room and my eyes are closed, because I am scared.  Occasionally I would open my eyes during the transport and it feels like people are lined up just watching me.  Come to think of it, they probably had to stop so that me and my big rolling bed wouldn't run them over.  They had warned me that before we get to the operating room I would feel a little breeze.  I felt the breeze, so I knew we were close.  Again, I occasionally peak at my surroundings, but I can't see much besides bright lights since I don't have my glasses on.  They ask me to scoot off my bed to the surgical gurney.  I don't remember much, but I remember the surgical gurney feels really small.  Someone tells me I'm skinny, so it's nice I fit.  Isn't that what everyone wants to hear right before they go under, that they are skinny?  The nurse anesthetist tells me she's going to give me something to relax and it can't come soon enough.  I remember her starting to put an oxygen mask close to my face and being able to smell the plastic.  That's the last thing I remember.  Not to self: Next time, I'm listening to Jill and turning on the water works in the surgery holding cell.

Post-Op
8:00 am - My surgery lasts about 45 minutes, so I'm told.  I don't remember much about the recovery area, but for some reason I am picturing a woman with long, big, blond hair.  Not sure if she's real or someone I made up.  

At some point, DHL talks to Richard and reports that all went well and that everything looked good and healthy.  What a relief this must have been on Richard.  He's a bit of a control freak, but in a good way.  He would give anything to protect me from being scared or hurt.  

I must have been in recovery for quite some time, but I don't remember much of it.  

10:30 am - I vaguely remember being wheeled to our room and R is in the hallway waiting for me.  Somehow I am transferred to the bed in my recovery suite.  Again, I don't remember much, but I do remember being in a significant amount of pain and writhing around.  Perhaps my pain meds from surgery had worn off or I was just coming to enough to realize the amount of pain I was in.  I was probably out of it where I wasn't even aware of my actions or what I was saying, but I was definitely awake enough to know I was hurting.  Richard tells me that they administer a pain med through my IV which must have been effective because again, I don't remember much past that.    

12:00 pm - We're in a double room, and they transfer me to a different bed, as the first bed I'm in seems to be having a few issues.  No biggie, I've got a morphine drip and I must be feeling pretty good at this point.  Again, I don't remember much, just bits and pieces of certain moments.  Did I mention I'm in the postpartum unit of the hospital.  Lucky for them I wasn't wearing my crazy pants just yet and even if I wanted to they wouldn't fit because I'm so bloated!, but putting a woman who just had a hysterectomy around babies seems like it has potential to be a disaster.  Lucky for me and everyone else around me, I wake up feeling good about my decision.  At least so far.  

At some point, I wake up and look up and my sister is walking in!  Again, I don't really remember much, but goodness, it meant a lot to me that she would come up and surprise me.  Like I've said, everyone deserves a Gill!  She brought me a grilled cheese and a peach mango tea.  I was so thirsty and hungry, but had a bit difficulty swallowing, probably because of the tube put down my throat during surgery.  

Jill, Richard and I hang out a bit, but I don't remember much of it.  I do remember taking a selfie :) for the blog.  Goodness, Gill is beautiful.  And I am pale and look a bit drunk.  Usually, Jill is the one that looks drunk in our selfies, because well...

Gill looks great.  I look like someone just ripped my insides out.  Oh wait, they did! 

I don't remember much of the remainder of the day.  I know I had trouble sleeping, but when I would go to sleep, it would be for 20-30 minutes, but it did feel like good sleep.  I also know I got up to walk a few time...  Perhaps the pain meds were working too good.  A few of the nurses were saying how great I looked for just having surgery since I was walking around.  I think those couple of walks will come back to bite me in my big o BRCA butt.  Oh, and I peed A LOT!  They make you pee in this top hat looking thing that measures your pee and I constantly was receiving fluids.

Around 3:30 the next morning, I called the nurses station to ask for another pill and they took my vitals and gave me a final dose of antibiotic.  R woke up with me and we ended up watching the Big Brother episode we missed.  Making memories at 3:30 in the morning.  Bonus, we were the only people in a double occupancy room, so R got to sleep in an actual bed.  Poor guy was flat out exhausted.  Yes, I had a big day, but let's be honest, so did he.  Sometimes I wonder if being the patient is the easy spot to be in.  He was dozing off, so I remember turning on some calming worship music to help us both get to sleep ~ it worked!  Either that or it was the morphine.  Let's just say it was the music though.

Me about 24 hours out from surgery.  I am so swollen  ~ everywhere!
Richard said it was a good look and wondered if we could take some of that fluid home.  Perhaps we show this swollen picture to Dr. Price before my mastectomy.  HAHA!  

My Pain
A few people have asked what current pain feels like.  Here's my best way of describing it... Imagine you have grossly over ate at Thanksgiving, and then you eat another plate (my mom calls this other plate a sampler, where she fixes herself one normal sized piece of every single dessert being served).  Then, you have one of those gas pains under your ribs that takes your breath away, paired with a giant, never-ending contraction.  And it feels like my bladder is constantly full.  It's uncomfortable, but it's not unbearable with the pain meds.  Pain meds mainly just take the edge off.  Admittedly the morphine drip I had in the hospital took the edge off quite a bit more than the hydrocodone they sent me home with.  Physically, I have three very small incisions.  One right under my belly button and two right above my pubic bone.  Surprisingly, there's been very little blood.  Although, BONUS!  I did manage to snag a few extra pair of those great, comfy mesh panties.  The nurse called them Fredrick's of Freemen (Hospital) undies.  Another interesting fact, my nurse actually has the BRCA gene too.  Her procedures will start in the next month.  

I'm Coming Home, Back Where I Belong (Richard and I used to cruise in the jeep, top down listening to this by Jay-Z and Skylar Gray)
We're home now, and my big goal for tomorrow is to pass some gas and take a shower.  That's right, I'm shooting for the stars!  Richard is currently laying next to me dropping bombs.  Pretty sure he's doing it to taunt me.  Every time he does it, and he's doing it a lot, he looks over at me, smiles, and then says he's sorry.  Richard: if you are sorry you will quit rubbing in the fact that you can fart and I can't.

Val, my sweet mother in law came up to help with Mase.  She's awesome!  She keeps wanting to do chores, but I'm hoping tomorrow she will just come lay in bed with me.

That's it for now... getting drowsy.  

Appreciate all the prayers, messages and texts.  God is good all the time.

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.  

Day Nine. And still waiting...

Day nine and still waiting…

A few observations:

1. My mom is basically the only person who calls me.  Which normally is fine.  But since I'm waiting for 'the call' to find out my BRCA test results my heart skips a beat and I get paralyzed with fear for a few seconds every time my phone rings.  So, mom, if I'm a bit jumpy when I answer the phone, my apologies.
2. It would be great if you could track your 'sample' the same way you track the $7 t-shirt you order from Target.com.  I get it, these things take time.  But my mind starts to wonder and I'd love to see the hold-up the process.  Did my spit sample arrive at the lab?  Have they contacted my insurance about a prior authorization?  Is my DNA so spectacular that they are wanting to see what makes me so awesome?  Is there a back-up in the lab?  Was there a fire?  Oh goodness, what if there was a fire and I have to start this waiting thing all over?!  Did I warn you that at times my mind goes a bit crazy?  So if anyone has connections to Myriad labs, maybe ask them if they can spring for some sort of tracking system, just like our failing post office system offers.
3. I'm tired of carrying my phone with me everywhere.  Which is silly, because I usually always have my phone with me, anyway.  But, I'm not usually waiting for a phone call.  Normally my phone is for my convenience.  I answer it if I want to and ignore it if I want to…  It's like I'm a bit of a slave to my phone this week.
4. At 5:00 pm, I am a bit let down that today wasn't the day I got the call and a bit relieved that for the next 12 hours I don't have to worry about missing a call.