Hurry up… and WAIT!

Hurry up – and wait.  And wait.  And wait.

I don’t know many people whose lives are not a bit of a rat race these days. We race to school and work.  We race to take our children to the many places they need to be.  We race to shop, and cook, and clean, and wash clothes, and we sometimes even race to arrange our schedule so we can have some time off.

rat-rce

In our house we race.  Gratefully, we have added something fun in the form of Swim Team this year.  There are many weeks there is even time for two practices.  So she won’t be an Olympian.  But some fun is an improvement.

Because without that Swim Team – it was all medical – all the time.

i-love-swim-

Since birth really, as Meghan’s medical history really goes back to the beginning, but especially since our diagnosis of Cowden’s Syndrome in September 2011, we have developed a list of doctors all across the city of New York.  And they all require regular check ups…

top doctors nyc 2013

“Skip it…” whispers the voice inside your head.  “I don’t have time…” “We won’t make practice…”

But “skipping it” is not a luxury we can afford.  Cowden’s Syndrome has robbed us of the luxury of putting it off.  It is the clock that is always running.  It is the reality of my breast cancer – beaten.  It is the “reminder” in my iphone.  It is the spreadsheet necessary to sort out pediatric and adult specialists for just about every body part.

And before we even get to the routine screenings, there is the weekly Physical Therapy, necessary to combat the lax joints, and weak core that leave my girl prone to injury as she tries the most fundamental “kid” tasks.  Thankfully PT is a joy, and she truly loves to “PLAY” with Dr. Jill, but all that love not withstanding – it’s another day during the week scheduled.

There are hematology, genetics, interventional radiology, infectious disease, rheumatology, dermatolgy, neurology, and endocrinology to name a few.  Some are once a year.  Most are twice.  And that’s all well and good if everything checks out fine.  However, the need for testing arises regularly, which leads to MRI/MRA, lab work, repeat appointments….

Last year I tried to get them all done in July.  That was pure indescribable hell and it swallowed our whole summer.  Now, I schedule them a bit separated, carefully attentive to the time frames suggested as optimal to screen for any of the pesky cancers we are prone to.

And, while the cancer risks peak around 40, there are several cancers that regularly strike Cowden’s patients in and before their teens.

So, we schedule appointments after school, on holidays, in the evenings, and whenever we can fit them in.  We often find ourselves racing into an appointment after a long day – only to find ourselves waiting  to be seen.

wait card 1

“Hurry up – and wait.”

Meghan is an outstanding “wait-er.”  Partially because she’s used to it, and partially because she knows it’s necessary.  We know exactly what to pack, whether its homework, or an Ipad, or a book, to keep her occupied.  But she would rather be playing.  Or swimming.  Or resting.  Or crafting.  Or just being a kid.

We find ourselves facing the same problems many other families face – laboring to fit in time for fun.  But it is further complicated by fatigue and a lack of stamina.  She can not walk more that about 3/4 mile without wiping out.  She will, when time allows, sleep 13-14 hours a night.  So we have to always be careful not to push too hard, because the repercussions can be serious.  Sometimes I imagine friends think we make it up.

“Hurry up – and wait.”

And we raced into Sloan Kettering Cancer Center on December 19th after school.  I whisked Meghan out of her holiday party, braved the traffic and rushed into the office in time for our 3:30 appointment.

But some time before we got out of the car and walked into the building, Meghan told me about the “bump” in her neck.  The one she feels every time she goes to put her necklace on.  The one that she thinks is making her cough… that persistent tickle in her throat going back… oh… a few weeks.

So at 4:30 when we were called into the office for the routine endocrinology visit, the one the doctor had told em we did NOT need to have an ultrasound before because things were “stable” he almost immediately zeroed in on the spot Meghan mentioned.  He asked for a tape measure.  His eyes were serious.  He spoke of significant growth.  He said we needed a biopsy.

“So let’s do it.  I am off for 10 days.”

“Well, you know, with the holidays…”

“Let’s hurry up and get it done.  I will take whatever you have.”

And on Friday the 20th when my phone rang at work and I got the news that we were going to first need an ultrasound BEFORE the ultrasound guided Fine Needle Aspiration – I just about went through the roof.  The doctor explained that the radiologist doing the FNA needed a recent ultrasound.  (You mean like the one I had asked for with the December appointment all along?)  I explained I would stand for nothing less than scheduling the ultrasound and the FNA that very minute.  So we did.  Ultrasound December 23rd.  FNA under general anesthesia on December 31st.

“Hurry up – and wait.”

Apparently no one got the memo things have been a bit stressful around here this month.

So we did the ultrasound on the 23rd.  30 minutes with the tech.  Then 15 minutes for the doctor to review it, and another 20 minutes for the radiology doctor to rescan.  Nothing going on on the 23rd of December.  No worries.

“Hey, that’s a lot of nodules on a young lady…”  says the doctor.  ARGH!

So when do we squeeze in something fun?  Something she can say she DID on the vacation?

We made it up to see the New Year’s Eve Ball very early on that Saturday morning.   Meghan trying out the camera her Grandpa Tom left for her when he passed away earlier this month.  Trying to find the time to view her world through a camera lens.  We spent about an hour.  Then we went home.

Photo credit -Meghan 12/28/13
Grandpa Tom’s “smile”

NYE ball familyNYE ball 2013b

There were 2 play dates.  Lovely girls.  So I guess there was success.

And then today.

Arrive at 6:30 I was told.  So we were up by 5, and on the 9th floor by 6:30 – only to find it locked.

“Hurry up – and wait.”

please wait

We eventually found our way to the IV room, and then to Interventional Radiology on the 2nd floor.  The procedure was at 8:15 and lasted double the time it should have.

We left with discharge instructions and word that we SHOULD have pathology by Friday, but maybe Monday.

I may have a few cocktails myself as midnight approaches.  If I stay awake that long.  After all its been a long day, week….

And we know Daddy’s got the New Year’s Eve Ball well taken care of.

 

 

“There’s a bit of magic in everything, and then some loss to even things out…”

As I walked away from the pizza place, holding my girl’s hand, with tears streaming freely down my face the song “Magic and Loss” by Lou Reed crept out of my subconscious and began playing with frightening accuracy inside my head.  I have thought of the song from time to time over the last 20 or so years.  The album was first introduced to me by a dear friend soon after the passing of my beloved cousin “Angel Meghan” at the age of 6 in 1991.  As an elementary school teacher I have been known to “think” in books, but its more unusual for me to “think” in song.  It isn’t too often that a song “speaks” to me…

When you pass through the fire, you pass through humble
You pass through a maze of self doubt
When you pass through humble, the lights can blind you
Some people never figure that out

You pass through arrogance, you pass through hurt
You pass through an ever present past
And it’s best not to wait for luck to save you
Pass through the fire to the light

Pass through the fire to the light
Pass through the fire to the light
It’s best not to wait for luck to save you
Pass through the fire to the light

I have a brother.

Birth congratulations to my Dad and my brother’s Mom, Kelly would be overdue by about 24.5 years.  But I have a brother.  And I am damned glad I do.

I have always loved him.  Always known he was there.  Always followed the tales of his life from afar.  Always sent a card.  But, never really got to spend any quality time with him.  Knew he was well loved.  Knew he was tons of fun.  But never really got to KNOW him.  Not by anyone’s fault.  Life and circumstances have a way of getting in the way.

And then some time in November I had to make a phone call.  I had to call him in the middle of the life he established Texas, and tell him Dad was sick.  Quite sick.

I had known for a few weeks.  I had seen him in the ICU.  I knew about the jaundice.  I knew in my gut things were not good.  But it took weeks to get Dad to let me tell my sister the full extent of the problems looming.  Then finally he let me call my brother.

And while the weight of the guilt of carrying that secret was coming off of my shoulders, I knew it was delivering a crushing blow miles and miles away.

A few days to digest, and then another call.  “I think you need to come.”

And that was all I needed to say.

He stepped off the plane a few days later at exactly the most perfect time.  He parked himself right in Dad’s apartment and stayed.  He was there for those overnights that were getting a bit tricky – to say the least.

As you pass through the fire, your right hand waving
There are things you have to throw out
That caustic dread inside your head
Will never help you out

You have to be very strong, ’cause you’ll start from zero
Over and over again
And as the smoke clears there’s an all consuming fire
Lyin’ straight ahead

Lyin’ straight ahead
Lyin’ straight ahead
As the smoke clears there’s an all consuming fire
Lyin’ straight ahead

Dad was getting sicker.  Quickly.  And despite our initial desires to deny the reality, we knew that we were walking uncharted territory.

I grew up with two sisters -one older, and one younger.  We grew up understanding each other’s strengths and weaknesses, and working on love throughout.  Now I was in a different trio.  A different dynamic.  For a different purpose.  One none of us wanted to face – but we were there.  And the “All consuming fire” was “lyin’ straight ahead.”

We formed Dad’s “Team,” his three children, with whom he developed three distinctly different relationships through the years.  We took the best of what each of us had to offer.  We laughed at old stories.  We cried out of sadness and frustration, and anger and disappointment.  We held each other with gratitude for the man whose common link between us all had done wonders to bring us together.

Waiting for Dad’s procedure at Columbia Presbyterian – the one that was supposed to be 45 minutes, and was unsuccessful at 3 hours- we were all in quite a state.  My brother, aware of Meghan’s countless procedures at one point looked at me awestruck. “You do THIS all the time?”

Well – not quite THAT… but to some extent yes.

And there were times that we sat, each on our own personal hell.  Wondering, worrying, agonizing, reflecting, and above all desperately wanting to make it better.  We sought the magic wand… and realized it was already in place.

They say no one person can do it all
But you want to in your head
But you can’t be Shakespeare and you can’t be Joyce
So what is left instead

You’re stuck with yourself and a rage that can hurt you
You have to start at the beginning again
And just this moment this wonderful fire
Started up again

When you pass through humble, when you pass through sickly
When you pass through I’m better than you all
When you pass through anger and self deprecation
And have the strength to acknowledge it all

When the past makes you laugh and you can savor the magic
That let you survive your own war
You find that that fire is passion
And there’s a door up ahead not a wall

Dad’s struggles.  Dad’s worries.  Dad’s heartache.  His pain.  They were about to end.  He was going to be free from his broken body.  He was going to be free of his suffering and his pain.

But what about us?

I know all about the truth, and I believe deeply in Heaven.  But I am selfish.  I miss him.  I miss my sounding board.  My ally in all endeavors.  My confidant for the “blow by blow” struggles that were too tough for others to hear.

“There’s a door up ahead not a wall…”

We met at the cemetery today.  We stood for a while.  We cried a little.  We prayed a little.  We held each other a lot.  We know he’s not there.  He is in the crystal blue sky and the winds that blow, and in the hearts of all who love him.  But I admit to not shaking the selfishness.

We ate pizza as a family.  The conversation was easy and light.  Except when Meghan butted up real close to her uncle to talk about her biopsy Tuesday morning. Darned Cowden’s syndrome won’t cut her a rest.   She told him all about the arrival time, and the procedure.  She spoke like a pro – someone easily twice her age.

So much uncertainty.  So much loss.  So much worry.  So much… so soon.

She has taken an extra love to her Uncle Shane these last few weeks.  This whirlwind that took her Grandpa from her just as their relationship was budding, seems to have left her a pretty cool uncle to share some love with.

As you pass through fire as you pass through fire
Tryin’ to remember it’s name
When you pass through fire lickin’ at your lips
You cannot remain the same

And if the building’s burning move towards that door
But don’t put the flames out
There’s a bit of magic in everything
And then some loss to even things out

Some loss to even things out
Some loss to even things out
There’s a bit of magic in everything
And then some loss to even things out – Lou Reed

I have a brother.  And now I have to let him go.  But not far.  And certainly not forever.  For no one can live through what we lived through these last few weeks and remain the same.  There are experiences once shared that can not be forgotten.  There is respect earned that can never be lost.  The lesson, the reminder that life is fragile and fleeting remains forever.  I always had 2 sisters.  And I always loved them so.

But now, with an ache in my heart, and tears on my face, I have a brother too.

“There’s a bit of magic in everything, and then some loss to even things out…”

Photo credit -Meghan 12/28/13
With a “Smile” from Grandpa Tom

Disconnected

Mother Teresa trust

Breathe in… Breathe out… Breathe in…

I looked up at my Christmas Tree this week and was struck with the incredible sense that I would love to take it down.  Now.

I know that’s wrong for any number of reasons, but I have always been candid here.

In the 10 days since we have buried my father there has been a whirlwind of papers and errands.  There have been things to organize and sort.  There have also been “regular” things to do, as I pretend to feel like I am part of the world going on around me.

And as I sat in the chair last night trying to absorb the beauty of the brightly lit tree and the litany of memories spread out across it as the ornaments we have collected through the years, I couldn’t shake how disconnected I feel.

This year the reasons are kind of obvious.   I am starting to think its likely to get worse before it gets anywhere close to better.

Then my husband reminded me about last year.  He reminded me about Hurricane Sandy, and the fall Grandma took, and the days in ICU.  He reminded me about the car accident last November, and the months spent sorting out the paper, aggravation, and pain in my back.

It was right after Christmas last year that we had the “Santa” talk with my girl.  My one and only.

So, I guess I knew all along this would be a year I had to look a bit harder for the magic.  We looked hard in Disney in August.  And we found it.

But, by the time we put the tree up this year my father lay dying in the hospital with less than a week to live.  That day our family turkey and Felix’s special gluten free stuffing warmed the house with a soothing aroma.  I heard the Christmas tunes.  I helped with the ornaments.  And I felt like I was in a bad movie.

Meghan had suffered with migraine headaches most of October and November as my father was sick.  An MRI on November 20th confirmed the migraine headache diagnosis and the medication – once doubled – finally brought her some relief.

one day at a time

I couldn’t get the cards together this year.  I just couldn’t do it.  Maybe some time around Valentine’s Day I will feel up to a greeting.  I ordered the food for Christmas dinner  too.  Yep, its better for everyone anyway, as I am a rotten cook.  And the family is bringing dessert.  I bought gifts for the children.  Although even those were mostly purchased online.  And so many of the adults are getting gift cards to their favorite stores.

Last weekend Dad’s mom was in the hospital.  Today she is back at her home, but she is worn out.

And as I size up the dust that has gathered in every corner of my home I strive to remind myself that Baby Jesus was born in a stable, and slept in a manger.  Somehow, as long as we open our hearts to celebrate the real meaning of Christmas, the miracle of the birth of the Baby Jesus,  it will all be ok.  Somehow.

So tonight as I took Meghan to her 6 month thyroid check up; the appointment where they monitor those pesky precancerous nodules, I was reminded yet again that it is just not ours to control.  After the doctor examined her, and her neck, he asked for a tape measure.  He measured “significant” growth since June in one of the right side nodules.  “No point in wasting time with a sonogram, I need a tissue sample so we will schedule a biopsy.”

My heart skipped a beat.

“Where did you get that necklace Meghan?” asked the nurse.

“My Grandpa Tom gave it to me.  He died this month from pancreatic cancer.”

Sometimes silence really is deafening.

“It may take a few days to get it scheduled Mrs. Ortega.  You know, with the holidays…”

Yep.  I know.

wind

This one is for my favorite Marine

price of freedom2

There is a small sign on the first floor of the Veteran’s Hospital in Brooklyn, NY that expresses this sentiment.

It is small enough that I missed it the first week my Dad, a Vietnam Veteran was in the ICU for what they initially suspected to be liver failure.

But I noticed it last week.  Dad died on December 4th after a short, yet powerful battle with pancreatic cancer.

The Price of Freedom, of our freedom, the basic ones that we are all guilty of taking for granted at some point – is visible at that VA Hospital.  It is visible on the faces of the soldiers as they trek the halls, their journeys each through the battlefields of their own personal wars.

I have been away from my blog for a long time, and as I sit to write in the middle of the night, I can feel the tension finally beginning to lift from my neck.  Writing is my therapy and its cheaper and easier than the wait and the copay at any doctor’s office.

Dad didn’t have Cowden’s Syndrome.  Or at least we don’t think he did.  As a matter of fact, prior to his death, with the exception of one procedure – he was never really sick a day in his life.  When we would go to his appointments together, nurses would repeat in disbelief, “You don’t take ANY medicine?”  And he didn’t.  Not even a Tylenol.

Which is one of the things that has been bothering me so much.

I have held in my thoughts on this out of respect for Dad and his privacy – but since he encouraged my writing I am fairly sure he wouldn’t mind if I shared just a bit.

Dad saw active combat in the USMC during the late 1960s in Vietnam.  And besides the typical tortures of war, Dad was exposed to Agent Orange.

Now his body was seemingly unaffected from the toxins, but we theorized on more than one occasion that perhaps that toxic exposure triggered my own gene mutation into Cowden’s Syndrome.  Of course no one will ever know.  And even as I wonder if his cancer was a result of his own toxic exposure, I know I will never be quite sure.  His Dad, my Grandpa, died of pancreatic cancer in 1993.

But pancreatic cancer IS a genetic disease.  And even though in 90% of the cases, the genes spontaneously mutate, there are 10% where the genes are passed within families.  I don’t know the exact genes responsible, although I will in the coming months, as the genetic counselor where Dad was diagnosed will be contacting my siblings and I for testing.

More genetic testing?  It’s a thought too overwhelming to process right now.  That will come with time I guess.

I can’t help but wonder when there is too much knowledge.  I know that sounds foolish, coming from someone whose life was saved by the early warnings afforded to me after my Cowden’s diagnosis.  However, there is a point, a fine line, where you start to wonder when too much knowledge becomes a bad thing.

Tonight my thoughts are all over the map.  Tonight I prepare mentally for the wake and funeral over the next few days.  Tonight, I think about my Dad – the man.

Dad enlisted in the United States Marine Corps right out of high school.  He saw 13 months of active combat before returning to marry his high school sweetheart, my mom.  But, as young relationships so often go, this one ended a few years later.

Dad spent years trying to get settled in his heart after the trauma he experienced in the war.  He married again, and had a son, my brother.  But that marriage was not to be either.

Dad seemed to have a need to move like the wind for a lot of years, and our relationship through college was pretty distant.  Then in 1999, a year before my wedding, we began to reconnect, and our relationship had become closer each passing year.

wedding photo

Dad was not a saint.  But he was a good man with a good heart.  He was strong in mind, body and spirit.  Dad did the best he could with what he had where he was – always.

I spent lots of time working to understand the trauma that follows Veterans home.  Because of that I will always respect my father and the ways he tried his best.

But if I am honest, I am angry.  Really angry.  Not at my Dad, but at the cancer that snatched him from me just as we were coming closer and closer together.  The damned cancer that cut short a relationship just starting to bloom.  We had plans.  We were going to see the cherry blossoms in DC in the spring.  We still had things to do.

car-magnet-cure-pancreatic-cancer-purple-ribbon

Instead I am left with another ribbon to add to the collection.  One none of us ever wanted to own.

Dad often spoke about life being a puzzle, and each of us having a piece to contribute.  From our perspective its hard to see where we fit, and how our piece changes the landscape.  But, when our job is finished, our piece is placed into the puzzle – the greater puzzle – the one with no definitive number of pieces.  While this happens, our surrounding pieces are created.  The puzzle grows, visible in its entirety only to our the Creator.

As Dad’s piece was being placed into that puzzle, I was being reconnected with my brother, and bonding with my sister.  We learned to work together, to embrace our gifts, and our differences as strengths.  As a unit we were an unstoppable force getting our father anything he needed during these last difficult weeks, and I am so proud to be part of that “team.”

My father’s inner strength defies description, as he journeyed through his last days focused on a few key things he was compelled to accomplish.  Almost impossible to eat comfortably, Dad carefully conserved his energy and skillfully kept his body functional until he was able to receive his definitive diagnosis.  A diagnosis I am certain he fought for so that his children would have the ability for advance screening.

marine's mission

Dad was admitted to the VA Hospital on Thanksgiving Day, and lived for a week, as a parade of family and friends got to spent time by his side.

I walked the halls of that hospital quite a bit last week, reading prints of the NYC Vietnam Memorial such as these, as my already deep respect for our country’s veterans grew.

VietnamNYC

VietnamNYC2

We laughed, and cried, and told stories, and played music.  We held Dad’s hands in the moments before he went to meet the angels.  We were gifted with time to say goodbye.

My tears are not for my father.  He is finally free.  He paid the price for our freedom for all of his adult life.  Now he is at peace.

My tears are because I want more time.  My tears are selfish.  But I guess I good sign that you really love someone is when you can’t seem to bring yourself to say goodbye.

There will be time for thinking and reflecting on Dad, his life, his death, genetics, and long-term ramifications.

But for now, I have to get some rest.  Three days ahead to celebrate the life of my favorite Marine.

Semper Fi, Daddy.  I love you.

marine