Recovery – the real deal (Phase 1)

So a huge part of writing this blog is about raising awareness of Cowden’s syndrome, and its realities.  Some of the realities are really not so nice.

Cowden’s Syndrome involves surgery.  Lots of it.  Surgery really sucks.  Sorry, but it does.

General anesthesia is awful.  Toxic crap.  Especially awful in a body that isn’t fond of toxic crap.  Top that off with a breathing tube when your throat is being cut, and its definitely an uncomfortable wake up.

The surgeon said she did well.  He said he got the whole thyroid and the vocal nerves are intact.  He said she had many nodules.  Numbers in the teens.  A bunch were small.  A bunch were not.  He said there was lots of scar tissue from her three previous biopsies.  Only three FNA – tiny microscopic needles, caused significant scar tissue.

Cowden’s Syndrome – “HYPERHEALING is our Superpower”  What’s yours?

Surgery number 11 – done.  Procedures…. I’ve lost count.

Pathology 5 to 7 days.

She is sitting up, looking at her ipad.  A professional.  A tough girl.

Her Daddy is on his way home.  Home to get the car.  Hoping.  Praying that the calcium levels are good, and the thyroid levels are good, and tomorrow we can go home.

That brave face hides this...
That brave face hides this…
And sometimes needs this...
And sometimes needs this…

Two of my girl’s favorites…. “Let it Go….”

The snow glows white on the mountain tonight,
not a footprint to be seen.
A kingdom of isolation and it looks like I’m the queen.
The wind is howling like this swirling storm inside.
Couldn’t keep it in, Heaven knows I tried.
Don’t let them in, don’t let them see.
Be the good girl you always have to be.
Conceal, don’t feel, don’t let them know.
Well, now they know!

Let it go, let it go!
Can’t hold it back any more.
Let it go, let it go!
Turn away and slam the door.
I don’t care what they’re going to say.
Let the storm rage on.
The cold never bothered me anyway.

It’s funny how some distance,
makes everything seem small.
And the fears that once controlled me, can’t get to me at all
It’s time to see what I can do,
to test the limits and break through.
No right, no wrong, no rules for me.
I’m free!

Let it go, let it go.
I am one with the wind and sky.
Let it go, let it go.
You’ll never see me cry.
Here I’ll stand, and here I’ll stay.
Let the storm rage on.

My power flurries through the air into the ground.
My soul is spiraling in frozen fractals all around
And one thought crystallizes like an icy blast
I’m never going back; the past is in the past!

Let it go, let it go.
And I’ll rise like the break of dawn.
Let it go, let it go
That perfect girl is gone
Here I stand, in the light of day.

Let the storm rage on!
The cold never bothered me anyway…
And ROAR…

“Roar”

I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely
I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everythingYou held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready ’cause I’ve had enough
I see it all, I see it now

[Chorus]
I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’re gonna hear me roar

Now I’m floating like a butterfly
Stinging like a bee I earned my stripes
I went from zero, to my own hero

You held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready ’cause I’ve had enough
I see it all, I see it now

[Chorus]
I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’ll hear me roar
Oh oh oh oh oh oh
You’re gonna hear me roar…

Ro-oar, ro-oar, ro-oar, ro-oar, ro-oar

I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’ll hear me roar
Oh oh oh oh oh oh
You’re gonna hear me roar…

These three remain….

these three remain

She walked away today.  She broke the rules.  She updated the plan.  On surgery number 11 she hugged us goodbye, and dry eyed walked through the secure area with two young nurses.  The doors barely closed before I dissolved, an exhausted puddle, into my husband’s arms.

That didn’t last long… You only get a moment or two to pull it together.  Then there was some really rotten cafeteria food, and WAITING.

They took her in at 3.  Three and a half hours after she was scheduled.  She was tired, and hungry.  And more grown up than I am at 3 PM when I haven’t eaten.

What a whirlwind!  Last Wednesday when we met the surgeon I was stunned by how quickly he wanted the entire thyroid removed.  Stupid Cowden’s Syndrome.  Makes people quick to pull out whatever seems to be misbehaving.  And (SIGH) they are usually right.

So as the week built, and the media started predicting the newest storm coming…. I brushed it away for a while.  I thought there was no way it could stand in the way.  The surgery was scheduled.  She was ready.  The throat clearing has reached epic levels.

Faith.

faith

Faith that it was going to be fine.  Initially faith that the storm would pass.  Faith that we would arrive on time to an early surgery Thursday morning.

Then, as happens so often I was reminded that FAITH, is not about me.  It’s not about my terms, or my time, or my way.  FAITH is knowing, trusting, believing. that God will provide what we need.  Whether it fits my plan or not.

So, as it became evident that there would be no safe way to travel Thursday morning, the phone calls began.

HOPE

Rare_Disease_Day_Logo_Hope_

So much talk about HOPE this month.  Rare Disease Day, and “HOPE – It’s in our genes.”  Hope became necessary.  The faith and hope working hand in hand, with a few mini meltdowns of worry mixed in.  (HEY, I never claimed to be perfect!)

Back and forth to the surgical team, to the social worker, the secretaries.  Pleading.  Help us.  Hotel rooms that were available running several hundred dollars.  Offers from loving people to pay the bill.  But in the end money wouldn’t have stopped us.  We would have paid whatever we needed.  Because we had to be here.  Right here.  Right now.

So finally around 2 O’Clock on Weds. the call came.  “We can put you up at the Ronald McDonald House for the night.”  The fee – incredibly reasonable.  The location- perfect.  The reality – it was time to pack us up and be out of the house by 8.

Packing to take Meghan away is an adventure.  It’s not the electronics, or the “stuff” but rather the food.  Not even a major hospital can safely prepare Gluten, Dairy, Soy free food.  So there has to be a cooler.  Dad made fried chicken and plantains.  I picked up a pound of a Boar’s Head staple.  Cookies, granola, ginger ale, and other necessities.  Showers for all.  And Grandpa picked us up at 8.

We brought our own sheets – because you need to wash theirs before you go, and I doubted we’d have time.  I have to admit I was worried.  Really worried about what I would find through the doors.  But what I found was… love.

s

love-inspirational-daily

I had heard of “The Ronald McDonald House- The house that love built.”  But I never gave it any thought.

Ronald McDonald House

I have a new charity on my favorite list.

We were welcomed – almost embraced by love and kindness.  There was a nonjudgmental compassion the radiated out of every staff member.  We were given keys to our rooms, and a tour with the rules of the “house.”  We were shown to our room only after Meghan was allowed to choose a few games to play – and keep – from their back room.  And, after she was given a backpack – with a special monkey, and a monkey blanket.

And on the return trip after the tour, before we saw our room – she was handed a warm, beautiful, blue and green blanket.  Her grateful smile. My heart – full of love in this house.

Our room was on the 11th floor.  Immediately I was at ease with the wood floors, foam mattresses, and EVERYTHING wrapped in plastic.  And there was the most beautiful view.

Lobby
Lobby
Lobby
Lobby
Our Room
Our Room
View out the window
View out the window

And as we each found our way last night into our own level of sleep, there was LOVE.  Everywhere in the room.

We checked out gratefully this morning, due to arrive at the hospital for an 11:30 surgery.

View out the window on this "Beautiful Day"
View out the window on this “Beautiful Day”
Waiting for surgery with the new monkey from the bag last night!
Waiting for surgery with the new monkey from the bag last night!

By 3:00 when she finally walked through the doors we had had to spend some time reminding ourselves that we were blessed.

A beautiful chaplain met us this morning, and clearly spoke Meghan’s language.  She compared God to a loyal dog… always there – forever understanding of our needs.

The doctors took extra time with someone else’s baby this morning.  I am glad they have that level of compassion.  I am glad they take their time.

Now they need to take their time with mine.

The last status update came 15 minutes ago.  They only began around 3:40.  Prep took a while.  She is stable, but its slow going.  What to expect from a Cowden’s Syndrome thyroid filled with 16 or more nodules?  Why make it easy.

Thankfully – she has some very special guardian angels on the case today.  And the prayers of countless others.

In our family of three its appropriate to remember “These three remain; faith, hope, and love – and the greatest of these is LOVE!”

More to follow as soon as I can…