And the body says… SLOW DOWN!

So it’s  almost 2 AM on Sunday.  And I have to say, I didn’t see this one coming.

didnt see it coming

This is the part where I remind people over and over that just because you CAN live without a body part, doesn’t mean your body doesn’t miss it when its gone.  I mean we were made in one piece…

So the recovery was going pretty well, but that’s mostly due to her feisty determination.

But there is a point where you look back over the last 9 days and consider a few major things.  That point came at about 4, and 5 , and 6 this afternoon as she was violently and quickly vomiting herself into dehydration.

If you consider that there was the stress and worry of HOW we were going to get to the surgery, then the brief pleasant stay at Ronald McDonald House, followed by a 4 hour surgical delay, coupled with a less than smooth hospital stay that had its share of communication issues… you start to get a sense of the stress that has been this February “vacation.”

Sorry we didn't send a post card, but it was a blast ...
Sorry we didn’t send a post card, but it was a blast …

Really it extends way farther back than that… but rather than bore you again with all the back story I’ll stay current.

So on the 13th the thyroid came out.  It was a three hour procedure with lots of general anesthesia junk for my pretty organic girl.  Then there was the whole removing an actual PART of her body.  And then there was the introduction of the synthetic replacement hormone.  And there was lots of fidgeting with calcium levels.  And there were narcotic pain meds for a few days too to keep the edge off.

And at some point around 4 today her body had had enough.

I love when Meghan vomits and people say, “Is she sick?”  And I say “nope.”  Rarely, (knock on wood – NOW please) does Meghan get a “stomach virus,” but she’s not a stranger to vomiting.  She vomits when her body has had enough.

And today, her stomach hurt.  Her knees hurt.  Her hips hurt.  Today I couldn’t keep the pedialyte in cause it all happened so fast.  And, since there’s a first time for everything – we actually had to go to the ER for fluids.  Except she’s Meghan.  And she’s only a bit over a week post op.  And they just wanted to be careful… so she’s asleep in the bed.  I am typing away as I won’t even attempt to sleep until after the 3 AM meds.

without sleep

And after the ER was over and we came up to the floor for a bed – in a place we have spent some time before- we passed by the NICU where she started her life in 2003.  While I was reflecting I looked at our nurse and thought she looked a little familiar.  Once she told me her name I was incredibly grateful I had been kind to her son when he was in my 5th grade class some (AHEM 13 – or more) years ago.  You never know when you’ll need Karma on your side…

And now this poor, lovely nurse was left to contend with my daughter, reading package inserts and discussing medications before they were given.  Meghan talks a lot.  But I didn’t feel guilty about that part (GRIN.)

So the fluids kicked in and she began to perk up.  She had time to share with the doctors and the nurse her denim ribbons, her Cowden’s card, AND her movie for RARE Disease Day.  They want us to bring them some ribbons for the floor.

wear that you care photo

Me, I got my nutrients in my – thank goodness I always stuff a meal bar and an EShot into my bag… ALWAYS.  That knocked that pounding headache right out.

isalean-bar-chocolate Eshot

She bounces back.  Quickly.  But sometimes a little too well.  I have to watch her.  Determination can’t do it all.  The body has to help too.  And as strong and tough as she is, we all need to be reminded that, well she has this RARE Genetic Disorder called PTEN Hamartoma Tumor Syndrome… or Cowden’s Syndrome… and well, even though we may not always want to admit it – that darned syndrome can make life a little extra tricky.

Recovery – phase 3 = HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

At the end of the day… quite literally if you go by our arrival time last night… I guess all that really matters is that your little girl went through the surgery successfully and you get to arrive home, as a family to sleep in your own bed.

That’s why I refrained from saying too much in the midst of my Mamma Bear Rage last night.

mama bear

Because sometimes you need to sleep, and think carefully before you type.

The surgery went smoothly.  The surgeon did a fine job, and so did his team.  It was not their fault we were delayed by hours.  Someone else’s baby needed their attention.  And I can respect that.  He followed up personally, listened to Meghan, was cautious but not paranoid.  His attention is to the surgical incision. The follow up care needs to be guided by endocrinology.

Meghan’s largest discomfort, aside from the sliced neck muscles, appears to come from the “durabond” glue used to hold the incision together.  Things on her skin – even band-aids annoy her.  This is making it feel extra tight (doing its job,) and is making breathing and eating uncomfortable.

But we traveled to the hospital with our gluten, dairy, soy free cooler, and she was progressing on pretzels and our ginger ale, mixed in with a little “Ever Roast Chicken Breast.”  By the early afternoon she looked better.  The surgeon said to watch her till 5.  A fair number considering she didn’t hit recovery until 7 PM the night before.  If she was still good at 5 PM he would clear her to go.

And then there was endocrinology.  Perhaps spearheaded by the fact that Meghan’s endocrinologist is on vacation for all of January and February, or maybe just a poor information sharing structure, things fell apart at endocrinology.

When the thyroid comes out there is always the risk of surgical damage to the 4 small parathyroid glands that help regulate thyroid function.  That being said, even when they aren’t damaged, they are often traumatized for a bit.  Low blood calcium is OK for a few hours, but not a few days.  Like everything else, the body needs all things working together for smooth operation.  Originally it was explained to us, that it was not uncommon for the calcium to dip after surgery then recover.  They had to just see if it tanked out.  The decisions for her post op supplementation would be made based on these blood results.

So, she had blood drawn at midnight after surgery.  Then there was the draw at 1 AM for blood sugar.  Then there was a draw at noon.  Later in the afternoon one of the doctors/residents spoke as if Meghan had received a dose of calcium (2 pills and a liquid) prior to the blood draw.  I insisted that was not the case.  Then we were told the blood had to be redrawn at 6 PM and would be read at 7PM so discharge orders could be accurate.

Well, at 6:45 when I hunted someone down for the blood draw, again I thought it odd that the  calcium – that was supposed to be there before the noon draw, showed up 30 minutes AFTER the 6:45 draw.  I waited until 8PM and started hunting down results.  I was told that the ionized calcium had dropped from 4.8 to 4.3.  I picked up my copy to show them the midnight draw was at 4.8 and the noon draw was at 4.3,  Apparently the 6PM draw held at 4.3  There were two other tests, and I wanted the numbers.

Run around.  Run around.  Run around.  Finally after much work and some heated conversations we got the numbers from the other 6:45 tests.  The calcium held their own, indicating a drop off to be unlikely.

Originally we were told she had to stay overnight for a 1 AM and 7 AM blood draw.  Then we were told that since the labs were drawn with NO supplementation. ( I brought THAT to their attention) and she still did OK, that NO blood draws were ordered for one week.  NOTHING overnight.

Now it was after 10.

The day nurse, who was grossly overworked, and contrite and apologetic had missed the order for the calcium.  At least I was able to respect that she apologized right to  my daughter for muddying up the entire process and raising her anxiety.

The resident – 1st year who left because I was asking too many questions, and declared himself “off duty,” is the miniature version of why our medical system fails us.

The passing of the buck that took place around the endocrinology department – disgusting.

And this is the clean version.

Facilities.  Doctors.  People.  Can rest on reputations previously earned.  And then one feeds into another and that reputation carries them – sometimes too far.

We have been there, and done that.  And we are far from done.  So loyalty lies in individual treatment and care by individual doctors and nurses.  There is no one perfect facility.  There is no one perfect place.  Not even in Manhattan.

We gathered our things quickly.

We were in the car at 10:45PM.

My wise daughter asked what the lesson learned.

I said,”Trust your Mom.”

My husband said, “Educate yourself.  Advocate for yourself.”

I guess we are both right.

The ride home was tough.  Painful.  You use your neck for an awful lot of things.

But we got home in time to give her a well deserved Valentine’s Day Gift

Alex and ANI hero front

Alex and ANI hero back

She certainly is our Hero.  And as we travel down the road to recovery again – a road she is exceptionally good at – I hope she remembers both lessons from the car ride last night.  Especially the one to “Trust your Mother.”  For now I can be the advocate.  She has to find some time to be the kid.

Valentine's Day 2004 - our first hospital stay.
Valentine’s Day 2004 – our first hospital stay.
Valentine's Day 10 years later...
Valentine’s Day 10 years later…

Recovery – the real deal (Phase 2)

It was almost 11 last night when we were cleared to leave recovery, and taken to a bed on the Peds floor.  Dad had to leave to head back home before the next round of snow began.   After all, he needed to have a car ready for our (hopeful) Valentine’s Day discharge.

So we settled into a tiny, awkwardly laid out room. trying not to disturb a roomate who likely would have preferred not to be awoken at 11 to share a room with someone she didn’t know.

By that point I might have been a little difficult.  (I know that is SHOCKING!)

Mama and baby bear

mama bear

But as we settled into the room it became apparent that there was no place to walk safely.  Some rearrangements were made, and the reality that she couldn’t possibly see the TV was softened by Amazon Prime (on demand) on the laptop.

She was hungry.  At this point she was close to 24 hours with no food.  I try not to let her go four hours.  Her stomach needs constant gentle reminders it hasn’t been forgotten to keep it from getting angry.  They said soft and clear.  We tried apple juice.  Then they offered an italian ice with soy protein.  Not so much.  Another juice I was told.  And I should have trusted myself.

Soon after came the familiar green face from the child with a body full of toxic anesthesia crap, AND apple juice – which just isn’t on her list of beverages.

She is always my angel girl.  Even post op – she got herself to the pail before her body forcefully removed its toxic contents.

I took the opportunity to change the gown and bed sheets, because – why not?  And by midnight she was on my laptop watching “The Hunger Games.”

They said clear liquid.  I said ginger ale and gluten free pretzels.  I win because I don’t ask.  And she started to perk up.

Pain medicine in place,  she enjoyed the movie.  Except the blood draw.  Which fortunately was through the IV.  Then again an hour later. (Good thing she wasn’t asleep) only to find out her blood sugar was crazy out of whack.  The finger stick brought it into a much more normal range.  Thank goodness!

By 2:30 there were actually 5 uninterrupted hours of sleep for my exhausted girl.

She awoke at 7:30 immediately remembering the pain of having your throat slit open, and a small lumpy organ removed.  Today things were more stiff.  All the local anesthesia gone.  She was hurting.  And its a hurt I remember.  So it broke my heart worse.  You never realize how many things you use your neck for, until…

Brave girl.  Held it together.  Had some more of her pretzels and ginger ale, and even some of her chicken breast I brought.

We wheeled and dealed and got her to agree to a nap after her second movie.  And so she rests now.

Calcium levels keep us here.  Wondering and working to determine parathyroid damage.  The synthroid has begun.

The doctor will set us up with restrictions, rules, and orders.  When he’s able.

For now our chart reads “Pending Discharge.”

We are ready, and I am behaving…. I promise.

Ten years ago we spent Valentine’s Day in the hospital.  And here we are again.  What a decade.  It’s not glamorous by any means – but I am still with the loves of my life, and that makes me a lucky gal.

Trying to distract the pain away.
Trying to distract the pain away.
Me and one of my Valentines!
Me and one of my Valentines!

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…

Here. We. Go. Again.

This will be the year the surgeries outpace the age.  She’s been running a cool average of one a year for quite some time.  Now, at just about 10 and a half, she will get a jump start of her 11th surgery. February 13th. One week.

11-candles

That’s 11 surgeries.  Full on.  Operating room.  General anesthesia. Waiting for pathology.  Sometimes ICU.  Often staying overnight.  Real deal surgeries.

hospital

By my count we have been in 4 hospitals.  We have a system.  Felix goes into the OR.  I stay overnight.  It works for us.

system for surgery

Who has a “system” for surgery?

And that’s not the tests.  The MRIs that early on required general anesthesia, the three thyroid biopsies, the ultrasounds in countless places.  Nope.  Those have their own tally altogether.

My Grandma is 93.  She hasn’t had surgery yet.  Meghan thinks that’s weird.

That’s life with Cowden’s Syndrome.  Healing is “BEATINGCOWDENS.”

Surgery – the new normal.  Organ removal – the necessary means to avoid something worse.

I expected the surgical consult to be on the 6th.  Then my cell phone rang on the afternoon of the 4th.  It was confirming our appointment for the 5th.  The day it was going to snow, and ice and create horrendous road conditions.  And, if I couldn’t make it – it would be another month.

So, I spoke to my super understanding boss.  I rewrote my plans for a Weds. absence instead of Thursday, and after chopping anout 1/4 inch of ice off everything we left home at about 10:30 Weds. morning.

guardian angel

We have created quite an an army of guardian angels, and I called on every single one of them to guide our trip.  They were on point.  Not a hitch.  We were sitting in the waiting room hours before our appointment.

I got to develop the pit in my stomach as the young superheroes and their parents spent the afternoon on chemo pumps.  Pushing time.  The beautiful bald two year old in the blood room was a reminder to mind my blessings.

I had been under the impression I was coming to discuss IF surgery was a good option.  I had already decided I was unsure how I felt about whatever the poor pediatric surgeon at Memorial Sloan Kettering Cancer Center was going to be able to tell me.  But, I was a bit shocked when there really was no “if” in the room.

Her neck was examined.  Her notes reviewed.  I was reminded again of the failure rate of Fine Needle Aspirations for the thyroid.  (Close to 10% in case you wanted to know.)  I asked again what made her a good candidate for a complete thryoidectomy at 10.  The nodules. Consistent growth.  Vascular feed.  The tickle in the throat… It’s time they said.  It’s time.

nodule

I lost my thryoid at 20 in 1993 to a condition called “multinodular goiter” and “Hashimoto’s thyroiditis.”  They both stink.  But now I find myself wishing for such benign conditions to be the final result of the pathology we will receive 5 to 7 days post op.

Everything is moving faster here.  I don’t like it.  Not one bit.  I am a numbers person and these stats make me ill.

But, onward we go… because what choice do we have?

There will be work.  Follow ups.  Thyroid hormones to balance.  But we will figure it out.

She laughed today.  A lot.  Maybe she is relieved without the uncertainty.  She knew.  We all knew.

Saturday I will sign her up for her second year of CYO swimming.  The surgeon says only a week out of the pool.  And her scar should be half the size of mine.

never never give up

refuse to sink

Two days off of school   Then a vacation.  Kind of.  A “Stay-cation.”  Daddy will be home too.  Some movies, and maybe even some resting.  Maybe some healing for all of us.

She’ll be back in full effect.  Ready to rock “RARE DISEASE DAY 2014.”  Denim ribbons.  T-Shirts.  Movie night.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!"
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

A girl has to have SOMETHING to focus on.

Recovery

never give up

 

 

Recovery.

We should be professionals around here.  We should just get up, get going and move on.

But we are human.

We hurt, inside and out.

We get tired, and lonely.

We understand the tired and lonely that others have too – but some days it doesn’t make ours better.

Some days its hard to look at things from someone else’s point of view.

And that’s OK.

This one is a favorite of a dear internet friend :-)
This one is a favorite of a dear internet friend 🙂

Meghan is full of exhaustion and pain and conflicting emotions.

It’s annoying to realize you blew your whole summer at doctors and in surgery.

Thankfully we snuck in that Disney trip.

I can, and I do, take solace from my Facebook friends- the ones I know for real, and the web of Cowden’s survivors I have become intertwined with.

She has a smaller network.  Mostly because I don’t think she is capable of realizing the effect she has on the lives of so many others.

there is no pain i cannot fight

Yet, she is my hero.  And my rockstar.

I shuffled her around these last few days a lot more than I wanted to.  But, she likes to stay close by me when she is hurting.

So yesterday we picked up the car.  Apparently the “Magic Wand Guy” (Field tech) ran out of pixie dust.  He declared my car “not broken.”  Ironic because 2 weeks ago the same shop who held it for 10 days said they couldn’t fix it.

It’s definitely still broken.  On to the arbitration with the Better Business Bureau.  Just in case someone thought we might rest.  No worries.  Gloves are on.

She went with Felix and I for our physicals last night.

Then this morning, she went to work with me for a bit, and to pick up some of Daddy’s medical records.  (Really WHAT was I thinking staying close to home for a doctor?)

She is tired.  But she smiles.  And she hugs us.  And she asks for pain medicine.  And she wiggles her fingers.  And she looks at her pool, and the calendar, and she feels the inevitable.

I can’t stop it.  No one can.

So we keep busy.  We rest.  I stay close by.  We giggle and make jokes.  If I had to “lose” a summer, I couldn’t have lost it with a better young lady!

Recovery.

No worries – WE GOT THIS!

no one sees

 

It Never Gets Easier

They say “practice makes perfect.”

I disagree.

No matter how many times we practice this scenario, for surgery, for biopsies, for tests- it is no easier now than it was the very first time.

And boy have we had practice!

This morning, as Daddy walked with her to the operating room,(our routine firmly in place – Daddy does the OR and Mommy does any overnight stays) I was still struck with the distinct feeling that I had been kicked in the stomach with a large pair of steel tipped boots.

This one should be ok. 9 days wrapped and dry. Stitches removed, and we should see progress.

As long as…

Well now we fidget and pray and keep busy. There will be time for the rest.20130820-090603.jpg

Happy Birthday to my boobs!

Remember where you were a year ago?

I do.

A year ago this evening I was pacing the floors.  Making sure Meghan was packed for school.  Triple checking my hospital bag.  Planning my last meal by midnight, and pacing the floors – quite sure I wouldn’t sleep.

I was right.

I hadn’t arrived at that moment in my life by accident.  It was the result of years of breast biopsies for suspicious masses. MRIs, sonograms, mammograms – and a mother who was a bilateral breast cancer survivor.  Not to mention my diagnosis of Cowden’s Syndrome that had been confirmed only months before I met the warm, caring, and decisive surgeon that was about to remove part of my body.  Don’t wait till the summer – she somehow convinced me.  March 5th.  Get it done.

one_year

One year ago, on the morning of March 5th 2012, after vomiting repeatedly from terror, my husband and I left and headed to NYU hospital for my “prophylactic bilateral mastectomy.”

We checked in by 6 AM.  I can remember every detail of the morning.  It is imprinted in my subconsciousness.  It may fade over time – but for now…

My brother in law called my cell phone by six.  We prayed together.  Then, I just focused on breathing.

Checking in takes forever.  Everyone stopping in.  Lots of waiting.  I paced that small room so many times I swear my footprints are probably still there.

run-clock

And my husband – my pillar of strength – just waited with me.  When I wanted him to pay attention – he stopped and held my hand.  When I wanted him to ignore me, he dutifully read comics on his iphone.  I would not have wanted to be him.

I had to explain to the resident filling out the paper that I was not having “tissue expanders” put in.  Well this was not an easy concept for him.  Apparently that is just what everyone does.  The expanders are placed during the mastectomy, and then “filled” until the tissue expands to the size you would like, and then the silicone is placed.

Well I had already had a long talk with my plastic surgeon.  I had no desire to have giant boobs.  Nope.  I was sure.

She can keep her award...
She can keep her award…

At 38 years old, and the mother of a nervous 8 year old, all I wanted was to leave the hospital and not have to return for another surgery.  (The sweet irony of that wasn’t realized until I returned 10 weeks later for my hysterectomy… but anyway)

I had convinced the plastic surgeon to use whatever silicone implant she could – and put them right in.  After a lengthy discussion, she agreed.  It was more important for me to get right home to Meghan.

This resident was having a hard time wrapping his head around this, but finally we got the papers right.  They were to put in whatever one of these fit best – preferably a matched pair.

fake boobs

Finally it was time to head to the operating room.

I have had lots and lots of surgeries, but the thought that I was engaging in such a major procedure “prophylactic-ally” was literally making me weak at the knees.  Fortunately I managed to hook up with an absolutely awesome surgeon/plastic surgeon team.  Two women who are talented, compassionate, and understanding.  They gave me the peace of mind I needed right before the anesthesia.  The last words I recall before I woke up – “You’re doing the right thing.”

They expected a “clean easy procedure.”  After all I had had an MRI just a month prior to confirm I was cancer free.

Recovery from anesthesia isn’t my forte, although I have improved with experience.  I got to visit with my sister, and enjoy my husband.

The peace I felt after this surgery can not be understated.  I was so relieved.  The storm had been calmed.  It was done.

jesus_storm_calms_4

I left the hospital about 28 hours later on March 6th.  I couldn’t wait to see my girl.  The drains were still in place and they would stay for another week, but the hardest of the hard work was done.

So, on March 5th – my boobs are officially a year old.  At least that’s the day I adopted them.

And what a year it has been.

A roller coaster ride!
A roller coaster ride!

A week after my “prophylactic” mastectomy, I held in my hands a pathology report that clearly stated I had DCIS – early stage Breast Cancer.  Among the other “precancerous” conditions embedded in that report was the reality that I no longer had to be concerned with the “what if?”  It was done.  I was OK.  By the Grace of God alone – the cancer was out before it was ever a problem.  And, whenever I doubt, or get angry or frustrated by our Cowden’s Syndrome journey, I am reminded of that moment.  Without Meghan, and without her diagnosis.  I would have never proceeded with such an aggressive surgery.  God gave me my little girl, and spared my life.  We will use that gift as often as we can.

helping others

The weeks of recovery went smoothly, with lots of help from mom.

And then it seemed – no sooner was I back at work, that I was being told by another surgeon that I NEEDED a complete hysterectomy – now.  So, in May we went back.  This time at least everything was benign.

This is the year that included 2 surgeries for Mom and a thyroid biopsy for Meghan.  It included a car accident that I am still healing from. (And the very first thing I checked after I realized I had been in an accident was that my silicone was intact!)

I really did love my Hyundai
I really did love my Hyundai

It included Grandma’s fall, and ongoing recovery.

It included circumstances that caused me to step away from my church, and blessings that led me to a new one.

This year I laughed deep laughs, and I cried gut wrenching tears.  I got re-acquainted with old friends, and I met new friends in support groups online.

This year I learned there are some benefits to small silicone boobs… (with no nipples!)  I got to go bra-less for the first time in YEARS!

This year we vowed to make a difference,

This year we gave out over 2,000 denim ribbons, and taught a whole lot of people about Cowden’s Syndrome and Rare Diseases, and the Global Genes Project.

This year was only the beginning of the rest of our lives.

One year without my old boobs.  One year with the new and improved CANCER FREE version.  One year of countless blessings.  One year of boobs that will never sag!

getting over pain

HAPPY BIRTHDAY TO MY BOOBS!

one

Bra-less in Walt Disney World!

I just returned from 9 days in sunny, HOT Florida with my family.  We had our 5th annual trip to Disney to celebrate Meghan‘s birthday August 9th.  I now officially have a 9 year old!

The trip was great, and I will have loads of things to share over the next few days, so bear with me.  But this is the thought I had to share first.

I spent 9 days in Florida and I didn’t wear a bra – not once.

Now I was never huge.  Prior to my mastectomy I was a B cup, C if I had gained a few pounds or wanted to make myself feel better.  So, when I was discussing my reconstruction options for the new boobs with the plastic surgeon, she was a little surprised when I told her I wanted immediate implants instead of tissue expanders.

She told me that just isn’t the way they do things anymore.  She said she wouldn’t have enough skin to maintain my existing size.  So I said, “OK, go smaller.”  Now she was a pretty small woman herself, but she still spoke to me for quite a long time, wanting to be sure I understood what I was saying.

I did.  You see my surgery was as much about my daughter as it was about me.  I knew that tissue expanders required fills.  I knew that that meant more trips to the doctor.  I knew that it meant an additional surgery for the implants, and I knew several people who had suffered enormous infections with them.  I also knew I had to get home to my daughter and get about the business of recovering – quickly.  So, if that meant I had to go down to an A cup – so be it.  It supported the weight loss all the recent stress has brought.

After the surgery I wasn’t unhappy at all with the “new” girls.  Once healed I got used to them, and grew more confident.  So, when I went shopping for vacation I got a little daring.

All those shelf bra tops. the yoga ones, and the skinny strap camisole tops – well I had a few, and I bought a few smaller ones.  Then, I tried them on with no bra.  THAT was something I never dared to do before.  I jumped, I bounced. I checked.  Nothing moved.  And, since I lost my nipples to the surgery – nothing stuck out.

Well I spent 9 days in Florida, with minimal hot flashes, helped along by my moisture wicking tops, and no bra.

Best part of all, I am sure NO one had a clue.

After all that has gone on, if I don’t find the bright side, I will crack up.  So here it is, just for you – the shots of me Bra-less in Walt Disney World!

TWO bathing suits to pick from!!!!!

I never owned a 2 piece suit in my life… even though you can’t tell! 

Sorry about the strange head tilt… Never owned a suit that wasn’t primarily black either!

CAN I HAVE A WOOHOO?  THERE ARE BATHING SUITS AFTER A MASTECTOMY!

 Today after a few annoying things happened (like setting up Meghan’s appointment for Friday morning with the stupid surgeon, and fighting with a credit reporting agency over an old identity theft issue)  I got to try on my new bathing suits. 

Now, this (almost 39 year old) body, is in no condition to model, but I was so very excited I had to share. 

Since the mastectomy I have had a lot of work getting used to my new boobs.  They are smaller than the old ones, and that seems to be just as difficult to adjust to as if they had become bigger.  It just changes everything – the way everything fits and feels. 

I have also had to get used to no underwire – in anything.  That has been an understandable, but difficult transition. So, I have pretty much transformed my closet into tops that worked for me.  Lots of new T shirts, a couple of dress shirts that still need a tuck at the shoulder to tighten them up by the boobs.  But all in all – its going ok. 

When I first put on last years bathing suits I did cry a little.  I had to immediately put all but 1 (which was salvageable, but not great) up in the attic.  Not only did the boobs just not work in those suits, the stress of the last few months has taken off some pounds.  So they were a mess. I ordered 1 suit a few weeks ago.  My husband made me take it off because he said it made my boobs look fake.  (LOL… newsflash honey… )  But I understood. 

Got these in the mail today and got the seal of approval on both.  I have some nerve showing them here… but I want to know what you think. 

So come on tell me – black, pink, or try again? 

Have to have some fun, right?