Three Year Old Memories

It was about 4 in the morning on March 5, 2012.  I was laying on the bathroom floor, vomiting the contents of my “nothing to eat or drink after midnight” stomach.  I was dizzy, lightheaded and weak.  The task looming ahead that morning was unlike any I had ever been through.

As I lay there, trying to gather every ounce of strength in my body, I thought about the whirlwind that had been the last 6 months.  Just barely 6 months prior my daughter, and then I, had been diagnosed with Cowden’s Syndrome.  I had read and researched and didn’t like much of what I saw.  I digested elevated cancer risks in just about every body part – some of them astronomical – as I tried to triage the onslaaught of new specialists taking over our lives.

Cowden’s Syndrome was an explanation.  It wasn’t something we had just “caught.”  She was born with it, and its likely that I, a “spontaneous mutant” was born with that “frameshift mutation” on my PTEN gene as well.  But now that it had a name, and a definition, now that there was knowledge, there was also responsibility.

We had Meghan to the endocrinologist almost immediately and 4 nodules were discovered on her thyroid.  Emotionally scarring biopsy followed.  We met an oncologist for intake as well.  And I, I was set to deal with all those “peak at 40” risks that were now presenting like a time bomb in my own body.

I sat up when Felix came into the bathroom.  I don’t remember much of our conversation.  Somehow I got myself up and dressed and into the car.

We drove to NYU in a good deal of silence.  I am sure I cried a lot.  I shook quite a bit too.  But it was time.  The decision had been made.

Soon after diagnosis I was sent to a breast surgeon to address the 85%+ risk of breast cancer in Cowden’s Syndrome patients.  I forwarded her my medical records before the appointment.  At the age of 38 I had racked up 7 breast biopsies and had a mother who was a bilateral breast cancer survivor 15 years earlier.  We barely had said our “hellos” when she told me, “It’s time to schedule a bilateral mastectomy.”  I wasn’t stunned I admit, because I knew it was a possibility, but the matter-of-fact certainty with which she spoke was a bit unnerving.

not if but when

“You will get cancer,” she told me.  “It’s not a matter of IF, but WHEN.”

I asked if it could wait till July.  She said absolutely not.  March 5th was as late as I could push her.

She ordered an MRI in February “just to be sure” everything was ok.  The MRI was clean.

Just a normal “prophylactic bilateral mastectomy.”  If there is such a thing as “normal…”

I met with the plastic surgeon, arranged for the implants.  I blatantly refused tissue expanders, much to her chagrin.

My mom, during the time of her surgery had once called her breasts “superfluous tissue.”  I tried to keep that in mind when I was making mind- numbing decisions.

We got checked in at the hospital before 7 AM.  There was a whirlwind of doctors and nurses traveling through.  Some had me signing consent, others were checking various things.  I wanted to run, and scream.  I felt like I was stuck in a bad horror film.  But, I sat.  And I signed papers.  And I waited.

And then it was time.

It was a long walk to the operating room after I kissed my husband.  I couldn’t much control the tears.  I was terrified.  The last thing I remember preoperatively was my surgeon looking me right in the eye and telling me, “You’re doing the right thing.  You’re doing the brave thing.  There is NO other choice for you.”

I woke up hours later in recovery, and after first verifying that the anti-nausea meds had worked, and I had no urge to vomit, I checked out the bandages covering my chest and I felt…  sweet relief!

third-birthday-cake

Even now, as I think back three years later, I am certain that was my first, and most genuine emotion.  I felt relieved.  I felt empowered.  I felt victorious.  This was one battle Cowden’s was not going to win.  We played on my rules and my time… ok, well the doctor’s time… but still!  I knew of too many lives lost to breast cancer, and I would not be one of them.  One less worry.  More time to be the Mom and help my girl through this genetic mess.

every-test-in-our-life-makes-us-bitter-or-better-every-problem-comes-to-break-us-or-make-us-the-choice-is-ours-whether-we-become-victim-or-victor

I left the hospital about 28 hours after I got there.  The drains were the worst of it all.  There was pain, no doubt, but it was all tempered by the peace in my soul.  Mom stayed by my side for days, and we had some of our best conversations as I sat in the glider I had used to rock my baby Meghan to sleep 8 years prior.

Pathology was almost an afterthought for me.

That was why I was taken by such surprise when, 8 days later, the surgeon removing the drains said, “you made the right call.”

pink ribbon

At first I was confused.  I thought maybe she was just advocating my decision.  Then she showed me the multiple page pathology that cited 1cm of DCIS (Ductal Carcinoma in Situ) a “self-contained” malignancy.  There were all sorts of other markers too.  Cellular changes to indicate things were starting to go very wrong.  Because the DCIS was so far from the chest wall, I would need no treatment at all.  An hour before I didn’t even imagine I had HAD cancer.  Now, I was being declared cancer free.

“If you had waited for July to get this done, you would have likely been in a fight for your life.”  I will probably never forget that sentence.

piglet_gratitude_winnie_the_pooh

I stepped onto the street in NYC with my husband and my daughter.  We all took a moment to digest what had gone on.  We hugged.  Then I grabbed hold of Meghan.

“You my dear, saved your mother’s life.”

Confused, “How do you figure?”

“If it wasn’t for you Meghan and your diagnosis, no one ever would have pushed me into this surgery.  I would have found the cancer much later.  Possibly too late.  I am going to be Ok BECAUSE of you…”

As we let the gravity of that sink in, it was the ultimate lesson in perspective.

The steps that put us in line to have her, and ultimately me, diagnosed were life altering in so many ways.

Every piece of our past is a bit of the puzzle we are forming with our lives.  Some of the pieces are confusing, and don’t seem to fit.  But, sometimes we just have to wait patiently and watch.

broken pieces into masterpieces

Three year old memories.

Gratitude.

Day One

Matthew West

from the album Day One (Single)

Buy on Amazon | iTunes

Play sample

Well, I wish I had a short term memory
Wish the only thing my eyes could see
Was the future burning bright right in front of me
But I can’t stop looking back

Yeah, I wish I was a perfect picture of
Somebody who’s never not good enough
I try to measure up but I mess it up
And I wish I wasn’t like that

I wish I wasn’t wishing anymore
Wish I could remember that nobody’s keeping score
I’m tired of throwing pennies in a well
I gotta do something
Here goes nothin’

It’s day one of the rest of my life
It’s day one of the best of my life
I’m marching on to the beat of a brand new drum
Yeah, here I come
The future has begun
Day one

Well, every single day Your grace reminds me
That my best days are not behind me
Wherever my yesterday may find me
Well, I don’t have to stay there

See my hourglass is upside down
My someday soon is here and now
The clock is tickin’
And I’m so sick and tired of missing out

It’s day one
And here comes the sun

Every morning, every morning
Every morning, mercy’s new
Every morning, every morning
Every morning, I will fix my eyes on You
Every morning, every morning
Every morning, mercy’s new
Every morning, every morning
Sun’s coming up, the beginning has begun

Starting over, I’m starting over
Starting over, I’m starting over, starting now
I’m starting over
Starting over, I’m starting over
Starting over
Starting over, starting now
I’m starting over

“Every little thing gonna be all right…”

http://www.youtube.com/watch?v=mACqcZZwG0k

Bob Marley – “Three Little Birds

“Don’t worry about a thing,
‘Cause every little thing gonna be all right.
singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right!”

Rise up this mornin’,
Smiled with the risin’ sun,
Three little birds
Pitch by my doorstep
Singin’ sweet songs
Of melodies pure and true,
Sayin’, (“This is my message to you-ou-ou:”)

Singin’: “Don’t worry ’bout a thing,
‘Cause every little thing gonna be all right.”
Singin’: “Don’t worry (don’t worry) ’bout a thing,
‘Cause every little thing gonna be all right!”

Rise up this mornin’,
Smiled with the risin’ sun,
Three little birds
Pitch by my doorstep
Singin’ sweet songs
Of melodies pure and true,
Sayin’, “This is my message to you-ou-ou:”

Singin’: “Don’t worry about a thing, worry about a thing, oh!
Every little thing gonna be all right. Don’t worry!”
Singin’: “Don’t worry about a thing” – I won’t worry!
“‘Cause every little thing gonna be all right.”

Singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right” – I won’t worry!
Singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right.”
Singin’: “Don’t worry about a thing, oh no!
‘Cause every little thing gonna be all right!

Cocktail umbrella top
Cocktail umbrella top (Photo credit: Wikipedia)

I can imagine sitting on the deck by the pool.  Oh, wait – the surgeon hasn’t cleared me to swim.  And, I still need a bathing suit.

The cute tankini I bought was vetoed by my husband who thinks it makes my boobs look fake.  LMAO at the irony of that!

Well, at least I can imagine sitting on the deck with a strong cocktail in hand… working to convince myself that every little thing is gonna be all right.

My daughter’s much awaited appointment was today.  The sonogram was at 1, and the doctor at 3:30.

The sonogram was thorough – took almost 45 minutes.  The doctor reviewed the images, but could not give us a clear decision until he uploads the CD  I brought with last September’s sonogram images for comparison.  

For right now he said things looked good.   There are MANY nodules, but most are smaller than one cm.  He is content to keep watching every 6 months if he doesn’t find anything on comparison that warrants a closer look.  Somewhere this has to be good news, although I am always afraid to get too relaxed, so I am waiting for the phone call.

What boggled me was how laid back he was about the puberty.  He told me even though she won’t turn 9 until August and she has been developing a good 6 months, that it is not too early.   He said to leave it alone.  Apparently she and I are the only 2 concerned.  I have been super upbeat about all the changes to her, but I can’t help it.  In my belly it just feels WRONG.

Maybe I am just too used to worrying.  And there are reasons for that.  Its seems to be all we do.  Sometimes good news gets to be harder to process because it comes so rarely.  Sometimes it is almost odd to hear that things are “normal.”

So, we will wait for the phone call to confirm.  Then we will table the thyroid issue till December.

Next up for my girl, MRI/MRA of her knee. June 28th.

For me, well, I need to find a dermatologist, someone to screen my kidneys, someone to follow the tumor on my spleen… oh, and I need a bathing suit.  According to my dear husband, one that doesn’t make my (fake) boobs look fake.

And, a LARGE cocktail with a cute little umbrella, and some Bob Marley in the background…

Every little thing IS gonna be all right!

Ready or not!

Clocks
Clocks (Photo credit: Leo Reynolds)

Time is a strange phenomenon.

It just doesn’t stop.  There are days we would like it to go slower, and days we would like it to go MUCH faster. 

There are days we would like to relive, and those we would gladly forget.   But really, we have no control at all.

60 seconds in a minute 

60 minutes in an hour 

24 hours in a day 

7 days in a week 

52 weeks in a year  

I find there are  occasions when I would like time to hurry up.  When I am waiting for my daughter to get out of surgery is the best example.  Time can’t go fast enough.  When I am waiting on pathology results, for any of us – it always seems like forever.

Hourglass (PSF)
Hourglass (PSF) (Photo credit: Wikipedia)

When we were first diagnosed with Cowden’s Syndrome in the fall, the first thing they did was send my daughter for a thyroid sonogram.  Of course it revealed 4 large nodules which we subsequently had biopsied at a hospital no better than a butcher shop. 

As we sought out another opinion, and moved the slides to a much more reputable facility,  an appointment in January found us with a pediatric endocrinologist who actually had some experience with Cowden’s.  He told us he had reviewed the slides and noted precancerous cells.  He essentially told us our daughter would have thyroid cancer at some point, he just could not say when.  So, he told us to return in 6 months, and we would check again. 

I remember at the time thinking 6 months was an eternity.  I wanted it to be faster.  I wanted reassurance that she was well.  He was insistent that 6 months was appropriate. 

So we made the appointment for June 14th. Now June 14th is tomorrow.  And I think I may need a little more time before I am ready. Things have changed.  Now we have an 8 year old with a developing body, and labs that don’t match.  Now the reality that there could be a malignancy on her thyroid, actually helping cause some of these problems is making me want to vomit. 

                                                                                                                                             If we could slow things down… just a little? English: A stopwatch is a hand-held timepiece ...

 15 hours from now we will be sitting for the thyroid sonogram, and 17 hours from now we will be discussing the results with the doctor.

 I am trying to prepare myself for whatever he has to say.  I have to hope for answers, for her sake. 

 Even if they aren’t the ones I want. Too many open questions.  Too much time had passed. 

Ready or not, here we come!