Absolutely, Positively, Negative.

I am rarely given a straight answer on anything.

Last December as my Dad was dying he made a request.  He asked that we be tested for genetic pancreatic cancer.

My grandpa had it, my dad had it.  It made sense.

It took me 7 months to get it together.  I already had a really crappy genetic disorder, and I was not interested in hearing more about my faulty mutated genes.

But I did it.  Because I promised.

And in the midst of the chaos that was the week that was, I received a letter in the mail.

13 genes tested that are related to pancreatic cancer.

13 genes negative: NO CLINICALLY SIGNIFICANT VARIANTS DETECTED.

No guarantees.   But, life has none.

Simply a straight answer that actually doesn’t turn my stomach.

There is so much more to say, but for today.  Only this.  Only positive.  Only the good news that I passed none of these other mutations to my girl.

Deep breath.

angel_1_pancreatic_cancer_decal

 

Soft Lock Downs and other things that shouldn’t be…

I spent the weekend with my college roommate.   She was the one I lived with the longest.  She was the one who introduced herself to me the first day.  She held me 2 months later as I was wracked in sobs at the loss of my cousin Meghan on my 18th birthday.  She learned how to drive in my Toyota.  We had fun, shared friends, and life, and got to know each other in deep ways saved for long term friends – or ones you’ve lived with.  We gathered enough good dirt on each other to be sure we’d be friends forever.

friends-are-forever

The last time I saw her was in December.  She and her husband showed up at the wake for my Dad.

The time before that was when I made it out to the wake for her Mom.

Somehow we find each other…

And this weekend we hugged first on Friday, in that room in New Jersey, miles away from each of our homes.  We cried, and hugged and pulled it together.  As the scene was replaying itself again.  But this time it was far worse.

College Graduation - 1995
College Graduation – 1995

It’s not right that we don’t see each other.  And it’s no one’s “fault.”  And I have a few dear friends I am in the same situation with – whose kids I’d barely recognize if it weren’t for Facebook and Instagram.

We stood together for a while, just the two of us.  Interrupted only by people trickling by.  We spoke about his fight.  His strength.  His battle.  I told her how much I respected all he did to fight.  I told her I was so privileged to have shared a few email exchanges after he took to this blog.

But, from where we stood, in the out of the way corner that defined her comfort zone, we might have even forgotten why we were there.

Although the reality became apparent through the greetings, and the hugs, and the “I’m so sorry…” sincerely sent in her direction, over and over.

Her little brother had died.  Her “little” brother was little in age, not in height or spirit.  He had a presence about him 20 years ago when I greeted him in our dorm room.  When he spent time with us.  His charm, and sincerity, and personality resonated even then.

Her “little” brother was 36.  Diagnosed with stage 4 pancreatic cancer months ago, he fought with every fiber of his soul, through every treatment and surgery presented.  He fought for his family, for his wife of 10 years, and for his two handsome young sons.  He fought out of zest and a love of life.  He fought for his siblings and his Dad.

780166Pancreatic_Cancer_Awareness

I remember when she and I spoke this summer.  I remember the conversation because she asked me a question I didn’t want to answer, but one I had needed to ask myself months earlier.  She asked how long it had been for my Dad, from the time he was diagnosed until the end.  And as I choked over 10 weeks, I instinctively tried to fill that statement with stupid things… “he’s young, there are things he can do…”  But, she had heard a number.  Just as I had when I had asked the question months earlier.

And I kept an eye on the calendar as I checked in on my friend.  And every day I thought of her.  I prayed often for her brother, and the family.

505f8c5395c183d95900a6d4b1a2c5f0

Sunday came the text that he wouldn’t make the week.

Tuesday came the one that said he was no longer suffering.

Friday rolled into today, and we sat.  Side by side in a standing room only funeral parlor.  We hung onto each other’s hands and friends and family alike shared stories, and memories of a guy who seemed to have been larger than life.  And my favorite story of the day came when they said he went back to college after he had his boys.  And he got his Master’s Degree too.  Not for financial gain, but because, “How can I hold my boys to a higher standard than I hold myself to?” Class.  His spirit filled the room.  There was an abundance of support, and love.

And then we were at this backyard party at her brother’s house.  And to the naked eye it could have seemed like any end of summer gathering.  But it wasn’t.  People were eating, and sharing stories, and passing time together.  And two handsome blond boys ran about with their friends.

And then there will be tomorrow.  And this young woman, now a widow, will need to press on for her boys.  And those boys will slowly come to the realization that Daddy is never coming home.  And his sisters to the reality that he won’t be at the next gathering, and his Dad to the realization that his son and his wife have now gone on before him – leaving him with lots to take care of.

36 years old.  Father of 2.  Dead from Pancreatic Cancer.  Illogical.  Incomprehensible.  Insidious, painful, horror show of a disease.  It just doesn’t make sense.

At all.

And there have been so many things that don’t make sense.  Ever.  They pale in comparison to the horror of a son and a brother, and a father dying out of order, yet still they are the things that keep me wondering about all things.

I think it was Wednesday at work.

I had a first grade class.  And the loudspeaker went something like this, “This is a soft lock down drill.  Please take all proper steps.”

And just like that 28 first grade students instinctively went to the back corner of my room.  The stayed low and quiet as I shut the lights and the smart board and locked the door.  They got themselves out of sight of the glass window on my door.  And they sat.  Silently.  And I was stunned.  I think it was the 10th day of school.  They range from 5 to 6 years in age.  And they never moved.  They looked to me for a reassuring face.  I faked it.

Truth is as necessary as I know they are – I HATE those things.  And in this post 9/11 world, littered with countless nonsensical school shootings, and deaths, I get it.  And I take it seriously.  And the reality that one day we COULD be a target of chaos doesn’t escape me.  But that doesn’t mean I have to LIKE it.  I don’t like that we need to scare the crap out of these little ones just in case.  They are growing up in a wild world.

So wild that when Meghan’s Social Studies homework became to be aware of the news every day, (something we actively have tried to hide her from because there is just enough CRAP in her life) one of the first stories to come across was terror threats in Times Square.  She gets things very quickly.  And she is stellar at context clues.  Dad’s in Times Square every day.

These kids are growing up in a tough world.  Grown up worries.  Grown up realities.  Young minds.  It’s so hard to make any sense of it at all.

And so when the ones who are supposed to help -just don’t, well that seems to make things worse.

In the middle of the renovations that swallowed the end of August, Meghan broke her foot.  A stress fracture to one of the superficial top bones.  I am absolutely not getting “Mother of the Year”” for this, because I was in full on “suck it up we have things to do” mode for the first 36 hours after she banged the foot hard into a misplaced shelf in the basement.  That was a Thursday night.  And by Saturday of Labor Day weekend, we found ourselves in Urgent Care with a “suspicion of fracture.”  Of course being a holiday that simply meant ice, rest and elevate till Tuesday when we could get to the podiatrist.

meghan boot 2

And we brought the X-ray, and the report.  And everyone was very pleasant and we were told that the X-ray abnormality didn’t exactly line up with the point of severe pain.  So, clinically it was appropriate to diagnose a stress fracture, put her in a boot, and have her repeat the X-ray in 2 weeks.

So she began middle school days after getting her braces off, with this giant black boot on her leg.  And she plugged along for two weeks, and we got the X-ray repeated as we were told to.  So, when we returned to the office for the recheck we gave them the disk and the report.

There was some grumbling about the  radiology place we went to writing the “worst” reports (but no one told us where to go,) and some discussion in the other room about things on the film that were “probably nothing.”  (Doctors should learn some moms have rabbit ears.)

So he came into the room after having had Meghan take off the boot.  There was a surgical resident in tow.

“How does the foot feel?”

Meghan, “Much better.”

“Great, there’s no evidence of fracture on the x-ray.  You must have healed.  Let’s transition you off the boot.”

meghan boot 1

Please know during this whole exchange he NEVER EXAMINED HER FOOT!

Me, having already read the X-ray report, ” What about the report talking about “bony bridging and bordering sclerosis.?”  Does that mean anything?”

“Well, it’s not causing her pain is it?”

Me,”Well she doesn’t have foot pain, per se, but, there is chronic joint/muscle/bone pain that we work on.  Could things being out of order in the foot trigger some of this?”

Me,”I guess really what I’m asking is, is anything on that X-Ray consistent with Cowden’s Syndrome?”

“Well does Cowden’s Syndrome cause bony overgrowth?”

Me, “You’re the doctor, I am asking you.”

“But you are far more familiar with the syndrome than I am.”

Me, in my own brain, Thanks to Google University, and then out loud, “Are you seeing this? (pointing to the extra bone that juts out of her left (and right) feet) on the X-ray?”

317152-google-library

http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=201 ( You may have to cut and paste the link)

(THAT IS A PAGE FROM A WEBSITE, reviewed by a doctor at the cutting edge of PTEN research.  It took me less than 10 seconds to find.  It verifies bone cysts connected to Cowden’s Syndrome, and had anyone asked I would have been able to tell them about the “non-ossifying fibroma” in the left femur that scared the crap out of us when she was 2.)

“I don’t think so, but you should probably have a specialist look at that.  I don’t need to see her again.”

GOOOOOOOOOOD THIIIIING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And I turn to see the tiniest tear in the corner of Meghan’s eye…. “Mom, he never even touched my foot.  He has no idea what the problem really is.  What’s the point of wearing the boot?  I have to trust my own body cause they don’t know anything.  I think its healed and the boot is hurting my knee.”

Fair enough.

She’s the closest I have to a doctor, and the thing that has made the most sense all week.

When you have a diagnosis that leaves you prepped for cancers of all types at all ages and in all places, there are things that rock you to your core.

Sometimes living with PTEN Hamartoma Tumor Syndrome is like living under the constant threat of a terrorist attack.  But the terrorist is cancer.

You get to live in fear, or live your life.

You get to try and make sense of things, or run with them anyway.

With the motivation of those – not connected to us by Cowden’s, but connected to us by life – who have fought the good fight, I try to stay focused.  To live life instead of hiding in a corner, or some days under the bed with the lights off…

So many things, so many tragedies will never make sense.

confused

But it’s less about making sense, and more about being sensible.  It’s about instinct.  And love, and compassion.  And cures.  I am a big fan of cures.

Tonight, wherever you are in your life. Whatever is rattling your world, I ask you to stop for a minute.

Say a prayer for those two little boys who will begin to know that Daddy is never coming home.

Say a prayer for a family who lost a 36 year old high quality man too soon.

And please.  In this world that makes no sense.  Do something logical. And kind.  For someone.  Cause we ALL need it.

 

“A tranquil mind is not a little gift…”

Growing up I didn’t spend a lot of time with my father.  Despite some really fun day trips, I didn’t really know him well at all.

My Mom married an incredible guy when I was in high school, and there was this love and support that was there every day.  We got to know each other quickly and well.

And that’s my tale of two fathers.

Ken has been a constant in my life since I was 15.  He loves me like his own, and has treated my as such, without fail, and in all things.  I adore him.

Dad struggled after Vietnam, after horrors that I can only imagine.  He struggled to find his way, and to find the balance.  He married twice, and had three kids, then he spent 10+ years in a long relationship.  He lived all over.  He worked to add his charm and personality to nightclubs all over NY.  He knew how to live on top of the world, and at its bottom.

Several years ago life brought him back local, and for the first time that I could remember, he wasn’t working nights.  We spent more time together.  He came to dance recitals and swim meets for Meghan.  He came to my house for gatherings, and just to be with us.  We liked having him around.  All of us.  Even the dogs.

I got to have two “Dads.”  While one is called Ken and one was called Dad, the terms are synonymous.  Two very different people.   Very lucky girl.

And I used this time to catch up with Dad.  We would talk on the phone a lot, about anything.  Sometimes he would talk.  And when he did, I listened.  When he really talked about old stories I sometimes even took notes.  Because I didn’t want to forget anything.  I don’t think he would have loved that idea.  I suspect he would have thought it wasn’t worth my time.  But, it was.

Lots of times I would talk.  He was a really good listener.  He knew when to interject and when to stay quiet.  He knew when I needed to hear advice, and when I just needed a sympathetic ear.  Sometimes I get overwhelmed.  And I just need to offload, without judgment or solution.  I called every Friday that I grocery shopped.  Sometimes we talked for hours.

And the years saw a transformation as he was being  treated finally for the PTSD that had tormented his every move since the war.  He didn’t talk much about it, but every once in a while… it was my turn to listen carefully.  And I did.  Gratefully.

Then the conversations started to include talk of him being tired.  Looking for energy.  Millions of excuses listed, tried, tossed.  Then there was the jaundice.  And the blockage.  And the pancreatic cancer.  And within about 10 weeks my sister and brother and I said goodbye to our Marine.  “The few, the proud…”  to the very end.

Dad was a philosopher.  Sometimes I was right with him.  Other times we didn’t quite agree.  But, it never mattered.

And in the weeks before his death I became his healthcare proxy – because I do healthcare all the time.  And I got his medical records,and put them in a binder, and Dad laughed because he somehow knew I would – and so did my brother and sister,  and my siblings and I took him to the fancier hospital.  And we asked some questions.  And we talked a lot.  But, it was done.  In the end it was just time for it to be the end.

But I was not, and am not ready to let go.  Maybe that’s unhealthy.  Or maybe that’s keeping the memory alive.  Whatever.

Dad, stopping by?
Dad, stopping by?

It took weeks to clean out his small apartment.  I touched every paper.  I read, and sorted, and filed.  I made more binders, and file folders.  I shredded only with great care at my own dining room table.  And as I sorted I found little scraps of paper.  Little random thoughts.  Notes.  Scribbles of Dad’s.  So I gathered them all together and I taped them onto large sheets and I saved them as a PDF for my brother and sister.  And I laminated the originals for me.  And sometimes on quiet nights, when my mind is busy and I can’t sleep, I peek through those notes.  Almost like a chat with Dad.

Tonight I flipped open to the words, “A tranquil mind is not a little gift.”

And I paused.  And I smiled.  Dad’s mind was not always tranquil.  But in the end it was even through physical torment.  He had lived enough emotional torment to know “A tranquil mind is not a little gift.”

I am a worrier.  Not a shock to those who know me even a little.  But, also not unfair, all things considered.

This was a light week here for doctors.  Only 2 appointments and one argument with a disrespectful office manager that led to a formal complaint.  Oh, and one random really large pathology bill that was clearly not done right.  The appointments were fine.  One was annoying in the leaving at 7 for an 8:30 to be taken at 10:40 to get home around 2, but all things considered it was smooth.  The other was with the gastro doctor who wants another visit to the ENT to peek down at the esophagus.  (If only I could get a scheduler to do these things…) And the fight of course was with my doctor.  The office staff of a vascular surgeon for a procedure I definitely need soon.  I’m in the market for a new vascular surgeon.

But since we had some time, and we were looking for some light entertainment, we replaced the bay window in the front of the house.

So after a slightly tumultuous, but altogether fun trip to Disney, we returned very late Tuesday, slept most of Wednesday.  Did lots of laundry, sent my husband to help out at my sister’s on Thursday, and Friday got ready for the new window.

Not that we WANTED a new window.  We just bought the other one 14 years ago when we moved into the house.  But about 2 years ago there was this little black spot that kept growing.  And we called the company to look at it, but it turned out there was a class action lawsuit we had to participate in and I filled out miles of paper and it took almost a year to get someone to the house.  By the time they came the little black spot was large and clearly water related.  So the nice man took pictures and the conversation was about replacing the center of the window.  Until they called the next day and said the black spot was in the wrong places, and the window would have to be replaced.  But since the window was over 10 years old we’d get a percentage off the cost for the window and installation.  Um, well that price was so wild we bought the window ourselves.  And Ken and Felix and his friend John got it to our house, and finally Saturday all the planets aligned to put it in.

It was supposed to be a half day job.  It was supposed to fit right in.  And Felix, and Ken, and John, and Bobby, and Brendan worked their bottoms off.  But, there was some cutting of walls, and by the time it was all back together on the outside it was well past 11 pm.  That wasn’t the inside.

bay window

bay window 2

I like the house neat.  Actually I need the house neat.  And you can tell me whatever you want about how it doesn’t always happen like that, or I have to give it up.  But I can’t and I won’t.  Because it’s a control thing.  I know it.  I’ll own it.  I can not control Cowden’s Syndrome, or any aspect of why Meghan feels cruddy so much of the time.  I can not control random illnesses or natural disasters, or unscheduled hospitalizations and surgeries, or any other obstacle that is going to come into my way.  But, through much experience I have found it markedly easier to handle every single crisis with a clean house.  Something about having order in the home, gives me some sense of peace when the waters are very rocky.

So, at 11 on Saturday night I looked around and began to freak a bit.  That’s when we decided to paint.  It was time anyway, and the house was on its ear so to speak.  So I prepped the room and there was paint.  And the living room and dining room are back together, but the hall needs a coat too… and you get the idea.

living room chaos

Not to mention that a few weeks ago Meghan began the move from her room on our floor to the upstairs of our cape.  There are two rooms with that peaked roof and lots of floor space.  (There have to be some perks to being an only!) She has a bedroom, and a room with a desk, and all the things she loves.  It has taken 4 weeks to clean out and move her, but we finished today.  And as I sat in her room I cried a little.  I remember distinctly being 9 months pregnant and crying in that room (see a pattern?) I was so scared.  I was right to be scared.  Some scary things have happened in the last 11 years.   This time I know the move upstairs will be far less painful than the one she’s sure to make just a few short summers from now.

megs empty room

It was a good time to move.  Junior High starts in just a few days really.  A whole new school.  A new chapter.  Turning point.  And as she decided what to keep, toss, and donate, her personality began to shine through.  With just a few pictures left to hang, she has created an atmosphere that is representative of her.  Now to keep it clean and clutter free… 🙂

But nothing is without event, and there is no time when I am fully at rest, as I frantically tossed my flip-flops off when I heard her cry out,” I NEED YOU!”  I arrived at the top of the stairs to find her crouched over grabbing a leg that has been giving her trouble for days.  One too many trips up the stairs, or on the floor sorting things?  Who knows.  Just like the headache that’s been around one day too many.  Sinuses, allergies?  God, I hope so.

At some point I’ll have to go to sleep tonight.  And tomorrow will be for more appointment making, and dealing with random bills.  The side of the house is littered with trash.  There are 10 bags being donated Saturday morning.  The clutter and dirt are disappearing simultaneously – with LOTS and LOTS and LOTS and LOTS of work.  But my sanity is being restored.

And while this is far from how I would have chosen to spend this week – so close to the end of summer, Meghan got some time in with some friends so it was in fact a success.

So much flux.  Moving Dads things in earlier in the year jostled the basement.  Moving Meghan upstairs caused some purging.  And slowly everything is coming together as it always seems to.

I think of how many times I would have called my Dad this week.  The number is too high to count.  I miss him every day.

He told me once to keep writing, to just keep letting it all out no matter what I thought of it.  So I do.  And I think about how he would have respected my need for order, while encouraging me not to sweat the small stuff.

Tonight I think calls for a glass of wine, and some reflection.  Gratitude for an almost “normal” week with largely “normal” problems.  Feeling grateful that my mind, while always a flutter, is somewhat tranquil, and…

“A tranquil mind is not a little gift…”

tranquil mind

Thanks for the chat Dad.  I miss you. A whole lot.

 

“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