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.

Jill's Surgery Update

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

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

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

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.  

The Waiting is Over... Sort of.

Yesterday (Day 20) was a really good day.  It was probably one of the most mentally sound days I've had since this whole thing started a month ago.  I kept busy, which helped and I didn't really have high hopes of finding out any news.

At 4:45pm, I looked at the clock and thought to myself "well, today's not the day" and I was completely fine with that.  Weird, right?!

Then, I get a call at 5:00 from Jessica at DHL's office.  She said she has my results.  I took a deep breath.  She said that I did test positive for the mutation, just like my sister did.  And that I should set up an appointment with DHL to go over options.  It was a slight shock, but I knew this was a possibility and I frankly was just glad to know the wait was over.  I quickly set up an appointment with DHL and wrapped up the phone call.

No tears came, still haven't.  A friend of mine offered me some great advice a few weeks ago.  She encouraged me to imagine the worse possible result and plan how I was going to react to it.  Visualize what that looks like.  So, over the past few weeks, I pictured myself getting the call and planning my reaction.  I didn't have to freak out.  In fact, keeping calm was good, as that way I could understand what the nurse or doctor was saying and so I wouldn't freak out Mason.  Kids are very sensitive to our reactions.  In fact, a few days ago I had a freak out moment where I was crying and upset and it really did scare him.  Luckily, Richard was home to assure Mase that mommy was okay.  But, I saw the fear on his face seeing me upset like that.  How scary it must be for a kid to see their parent's scared and upset.

Mason was acting like someone put RedBull in his juice cup, so I went right into Mom mode.  I think that distraction really helped.  In between putting his bike helmet on and playing catch, I called my husband, my sister and my mom.  I shared my results, but kept the conversations really brief.  There wasn't a lot to say... and frankly I was exhausted thinking about it, because it's all I've thought about for a month!

I still haven't broken down over the news.  I do feel relieved to have an answer and when I'm ready to make a plan, I have the information to go forward.  I am still mentally exhausted, so maybe my mind doesn't have the 'energy' to have a meltdown.  And, I'm also mindful that while this is inconvenient, it's not a crisis.  And, I'm very thankful that the dreaded 'inconclusive' result didn't happen.  So, I oddly, feel very content right now.  Much more content than I have in the past month.

I have a few appointments coming up, but I'm going to try not to dwell on those (at least until 48 hours before the appointment).  Honestly, I'm BRCA'd out.  To all you who have read, prayed and listened, THANK YOU!  I am SO BLESSED to have such amazing people around me.  I'll continue to update the blog, as it is really helpful for me to write it out, and then shut my computer and leave it all there.  I get to vomit it all out... then move on with my day.  And, since I start working again next week, I have plenty to keep me busy.

I'm taking each day as it comes.  But as for yesterday and today, they are still good days, so I'm going with that (as Richard would say "Ride her 'til she bucks you")!  I'm sure you will hear from me when it's a bad day, and that's okay, but I'm not there yet, so there is no reason to 'throw' myself in tizzy.