Mastectomy Day.

I thought I was ready for this day.  I had done the foot-work: I had taken the tests, found the right doctors and made a good plan.  I had figured out the logistics of taking care of the kids during my 3-4 week Utah stay.  Mom and Dad Jones were watching the big kids and Kari and Russ the little boys while I stayed with my Mom and Dad to heal.  Robert was off work for a few days so he could be with me.  I had become as educated as I could be with help of the Internet, cancer forums, blogs and, of course, pinterest   (Betcha didn't know what you could learn about mastectomies on pinterest!)  I had seen enough before and after shots to fill a book.  I had talked, at length, to at least 4 people who had gone through the same experience before me.  I had made bags to hold my drains (a total of four drains for the first week and 2 the second.) that were both functional and, I must admit, rather fancy.  I had even gone as far as watching a mastectomy on youtube.  Don't do it.  It's not a pretty thing to watch.

So...I was prepared.

Robert and I got up early to get to the Hunstman Cancer Institute by 7.  Now, I've had my share of surgeries in my life.  I'm not usually worried about going under or nervous with the outcome.  This day was different.  I could hardly move I was so anxious.  In fact, I was so beside myself, that when they gave me a cup to pee in, I walked into the bathroom, did my business and when I stood up to wash my hands, I realized that I was still holding an empty cup. I had forgotten the very reason I had gone in.  Worst still...I now had a completely empty bladder!  I was so embarrassed when I came back and had to tell them that I failed the pee test.  (That one is usually a slam-dunk!)  When a nurse came in and asked me how I was fairing, I managed a stoic nod.  When she put her hand on my shoulder, I burst into tears.  What a mess.

To make a really hard surgery even worse, there was one stop I had to make before the actual surgery.  That was to get the SNB (sentinel node biopsy) radioactive dye shot.  This shot is straight under the nipple and I've heard can be excruciating painful.  Well, why wouldn't it be?  It is radioactive material, after all.  Under.  The.  Nipple.  Sheez.  They say that they can't do this shot while you are out because it would be bad to bring radioactive material into a sterile operating room.  (a radioactive boob...not so much of a problem.)  However, my doctor said that when it boils down to it, it is really just a scheduling problem.  One that she is working on fixing but hasn't managed to rectify yet.  So, I get the shot while awake.  Now, most the nurses had prepped me by telling me that it wouldn't be too bad.  My doctor, whom I really love, sat down and said, "No.  This is going to really be painful.  Extremely painful.  But... it will only last for one minute.  Then it will be over."  The woman didn't lie.  Speaking from someone who has had many, many shots...this one takes the cake.  It felt like a knife stabbing my chest...for exactly one minute.  And sure enough, after that, the pain dissipated and I was just fine.  It was time to shake off that hit and move on.  They put me on a bed and rolled me into the operating room.

When I opened up my eyes again, I was back in a room with Robert standing next to me.  I don't remember the initial coming back with it, except that it involved a bunch of opening up my eyes, looking around and deciding that looking around required too much effort for my liking and going back to sleep.  When I finally shook myself from the anesthetic fog, I tried to look down at my scars.  They were horrendous.  I cried.  I made Robert take a picture so I could really see what I was looking at.  He resisted and I threw a fit, so he complied.  When I saw the picture I cried harder.  To me, it looked like I had been mutilated.  Because I was the one who had chosen this path, I felt, very strongly, like I had disfigured myself.  On purpose.  My choice.  I had walked into the the hospital feeling and looking healthy and I came out feeling and looking like I starred in a slasher movie.  I couldn't seem to pull myself out of this feeling of despair.   I felt ugly and broken.  When my mom came to see me, she cried with me.  She saw angry red slashes across my chest but most of all, she saw how emotional I had become.

The depth of my emotion really surprised me.  I never felt super attached to my breasts.  I never felt like my identity or personality was linked to them.  Often, I can logically reason my way through tough realities, but this one had me.  It wasn't until the my doctor came in and talked to me that I felt released from these dark feelings.  She came in and reported that I was looking good after the surgery.  She looked at my face and realized immediately that I wasn't handling it well and stayed for another half an hour talking it through with me.  She informed me that when they did the surgery, the DCIS was even more extensive then they previously thought.  (10 cm instead of 9 cm)  She told me that Doctors do a really good job in making the patients feel like they are making a choice but in reality, I didn't have a real choice.  It was either surgery now or surgery, chemo, radiation and possible death, later.  As with the other breast, it was a choice, she said, but not a very much of one.  With dense breasts and Palb2 I had a long future of extensive exams every 6 months, future biopsies, possible lumpectomies and possible mastectomy.  Not really a great choice either.  For some reason, this logical breakdown of the situation was exactly what I needed.  I needed my reasoning side of the brain to be jump started so my emotional side could calm down.

After the doctor left, I set about healing up and getting home again.  Although it has been hard to spend these last two weeks without my kids and Robert, this has certainly been the best decision in regards to my health.  My mom has been very diligent in helping my keep my drains clear and clean.  The slower pace here at my parents home allowed me to sleep when I needed it and eat when I felt like it.  I would have never been able to keep myself from pushing it had I gone immediately back home to my family.  I'm sure this is why I've been healing so quickly.  I've had one set of tubes taken out already and my second set will be taken out next week.

We did find out that although the surgery was successful, that my DCIS was actually touching my muscle in one area and my skin in another area.  Considering the amount of DCIS I had, the aggressive grade (grade 3), and my age, the doctors are advising that I have 6 weeks of radiation followed by a harder reconstructive surgery where they would take the skin & muscle from my breast that had been fried by the radiation and replace it with skin and muscle from my back.  We still haven't figured out if this will be the right path for me yet, and we won't decide until next week when I talk to both the radiologist and the oncologist.  I do feel like I'm in the right place with the right experts to make an informed decision about it.

In two weeks I'll get my first injection into my expanders to pump up my boobs.  After that I hope to go home with my sweet family and enjoy just being my kids' mama for a little while.  I'll be back in Utah for weekend, plastic surgery/boob injection jaunts for the following two weeks.  After that...well, we'll see.

Happy 13th Birthday Ethan!

For Ethan's Birthday, we all had a nice dinner with the main attraction being the ginger ale.

 Even Emmett was a fan!  (my little drinker!)

I just can't believe this guy is actually 13.  Just look how tall he looks next to Laina.  Sure, she has that effect on people, but still....

Ethan's birthday came and went in the middle of the crazy that had become my life.  It is only now, 2 months later, that I'm even finding a few minutes to post up these pictures.  We gathered together for his birthday dinner, gave him a pie and the very next day I was driving up to Utah to have my surgery.  His birthday party is still, at this moment, on hold.  Even with all the chaos, Ethan had a good attitude about it all.  

When I left him, I was still taller than he was. (barely!)  When he came up the next month...he had passed me up.  Thirteen is going to be a big year for him.  It has already come with the whole teenage drama.  Emotions are flying.  Feet are stinking up the house.  Attitude is often full of vinegar.  You know, everything they tell you about teenagers.  And Ethan has never been one to do something half-way.  If he is going to be a stereotypical teenager...he is going to go for the gold.  

And I have to say, that is one thing about Ethan that a part of me has always loved about him.  (The other part of me is screaming into my pillow!)  Ethan is either all in or he isn't.  Even as a little boy you'd be hard pressed to find someone with more enthusiasm for something he liked.  Things were never just fine or good.  They were either completely, fantastically outstanding or completely, fantastically devastating.  Either way, you knew where he stood.  

Ethan has such a good heart.  He often has very good intentions and he cares deeply about those around him.  He wants people to be happy.  In fact, I think that is where he gets in trouble.  He wants to please everyone, but instead of compromising between his relationships (friends/family/teachers/girls) he feels like he has to fully commit to just one group.  Usually, at this point, that group is his friends.  That is, after all, the group he spends the majority of his day with.  Once he gets back to his teachers or to us, he wants to be what we expect, but his previous choices have already left him letting us down.  I know this weighs heavily on him and hopefully this next year, we can help him learn how to navigate all these different relationships better.   

I have tried to impress on Ethan that he is not at the end of his story.  The fact that we have known all his triumphs and failures gives us a unique perspective on his life.  It allows us to see past his current mistakes and onwards to his great potential.  We have seen his heart clearly all these years and teenage angst and week-long groundings do nothing to tarnish the way that we love him.  He is talented in sports, art and music.  (here he is during a cello day clinic...he was fantastic!)

He works hard to understand his classes, despite his struggles with ADHD.  He has always amazed me.  He adores the little boys and he loves the twins.   He is smart and funny.  He has a wonderful singing voice.  He is creative.  He can be incredibly inclusive when he wants to be.  I am so proud of all his accomplishments.  He may not see how far he's come, but even looking back a couple of years, he has become so much better at controlling his emotions and dealing with change.  He's a very good boy and I love him so, so, so, so much.  

Because I didn't get a great picture of him on his birthday, today I made him go outside so I could get a better one.  Look at that crazy, gorgeous red hair.  And that smile!

My sweet Ethan; my beautiful boy.  13 years old.

Here are a few random pictures from the end of February.

Alaina was wearing this shirt all day, bunched up against her neck.  I couldn't figure out what was going on with it, until I realized that it was suppose to be worn over her shoulders.  She looked very Spanish, I thought.

Robert is the best multitasker sometimes.  Look at him do two airplane-boys at once!

Sometimes I wonder why those little boys adore Robert so much.  Then I see him feeding them chocolate cake for breakfast, and I totally  get it.  See how they are all giving the thumbs up sign for me?

Emmett is always glued to Robert.  Even snacking on food, he makes sure he is always touching him in some way.  

My girl.

I was at Costco with Robert and the little boys.  Jason suddenly shouted out that he needed to go to the bathroom.  I took him by the hand and off we jogged to the front of the store.  The only problem was, every person that Jason passed, he would stop and explain to them just where he was going and why.  I had to drag him away from each person to keep him on tract.  By the time he got to the register, he had a full on conversation with the girl who worked there.  Finally we got to the bathroom and his very favorite part was the hand dryer.  Jason is such a sweet and personable child.  He loves all people and is naturally engaging with them.  I love this little sweetie.

And this!  What an imp. 

A three day weekend came up and we decided to take off to visit Lora in L.A.  Plus, it seemed like a good time to hit the beach and relax before my upcoming mastectomy.  (We titled it a boob-cation.  You know, one last hurrah for the girls before the chopping block.)  So, off we went and Lora was more than accommodating by letting our whole crew sleep in her living room.  

Because our main objective, beside spending some good family time together, was to see the beach, the first morning we piled into the car and off we went.  Despite the weather being gorgeous at Lora's house, by the time we got to the beach, it had become overcast and absolutely freezing.  

We are no longer seasoned Californians, and we forgot that the weather could change so much in just a couple of miles.  (In Vegas if it is hot when you step outside, it's gonna be even hotter everywhere else you go.)  We were silly and didn't even bring any sweatshirts or blankets.   I felt like turning around and getting back into the car, but the kids started playing right away.

Ethan and Porter made sand castles while the twins (silly twinnies) jumped right into the water.

Poor Naomi was so chilly that we had to bury her next to her mama to stay warm.

Mark was also happy to make a sand castle.

Robert stayed in the half tent with my big babies.  Like I said, we aren't used to this cold weather thing.

Home again and finally warm.

Sunday we hung out and celebrated Valentine's Day.  I'm still a little shocked that we had a whole meal without one pink food.  That just isn't right.

Sunday evening, Robert and I went down to the beach and got a hotel for the night while Lora watched all 5 kids.  What an awesome Sister...and not too shabby of a Valentine's Day present!  The next morning we slept in and went out to a nice cafe for breakfast.  Later, we walked up and down the beach.  Awesome.  And to make things even better, it was a gorgeous, warm day.  While we chilled on the boardwalk, Lora went through the entire get-the-kids-ready-for-the-beach nightmare with Mark and they met us up, beach ready, for lunch.  After lunch we hung out as long as we could on the beach until we forced ourselves to leave and start the drive back home.

Thank you Lora & Mark for a fun, very impromptu visit.  (we decided to go a whole 12 hours before we arrived!)

Group shot.

Before we left, we decided to try and get a group picture with the adults.  First we tried to use the low retaining wall.  So we got the up-the-nose shot.

Next we asked a annoyed teenage girl to do the honors, and we were rewarded with one single, really crummy shot.  Actually, Lora and I looked great but neither on of the guys were even looking at the camera.   I'll just post up the good part.  :)

Gotta love those long weekends!

In January we had a bunch of random phone snapshots that I thought were cute.

Alaina posing.  She's just too cute not to document

Here is my very talented Artist Austin.  He was inspired by the things he loves.  

Legos.

and wolves.  :)

Robert had 'assumed the position' and fallen asleep in the couch.  Emmett climbed up and pretended to be asleep just like his daddy. 

Not super convincing.

Another one of my residence artists, Alaina, made this very sweet, very symbolic Egyptian get well card for me.  I loved it.

A very sad thing happened in January.  My baby boy got his very first haircut.  It did not make me happy to see his curls fall to the ground.

For a clean up, Robert used that massive dust-buster.

Look how grown up it made him look!

Jason got himself a new hair cut as well.  Notice there are no curls left on that child!

The other day Jason and I watched Disney's Tangled together.  At the beginning of Tangled, when Mother Gothel kidnapped baby Rapunzel, Jason ran up on to my lap and said,"That's not nice!  That lady takes the baby!  She needs to say, "Excuse me."  That is not not not nice to take a baby!"  Besides being extremely cute, this was the first time Jason has ever shown me that he understands things as complicated as this family dynamic.  He was able to connect the grown up Rapunzel with the stolen baby as soon as he saw Mother Gothem with her later in the movie.  It's a silly thing to write about, I guess, but it just reminds me how these little babies of mine insist on maturing and growing up.  I love it and hate it at the same time.

Another evening, when I was putting Jason to bed, he was having a hard time wanting to go to bed and kept getting up.  I finally snapped at him to lay back down and he instantly started bawling.   I stayed tough for a couple of minutes but he cried so pathetically that I couldn't stop myself from trying to comfort him. Through the tears he sputtered, 'Mama.  You break my heart.  You break my heart!'   Ah man.  Knife through the heart.

Silly.

We got a quick visit from my very good friend Lori.  It is strange to think that we met each other at the same age that Ethan is right now.

I was still healing from my recent gall-bladder removal/pancreatitis incident, and so we just hung out and chatted the day away.  It's crazy how many different things we experienced together. 

Another sweet daddy/baby moment.

And....more pictures of Emmett.  This kid just melts my heart with his cuteness.  Covered with spaghetti, or not, I think I just might keep him.