I used to be afraid of roller coasters

I used to be afraid of roller coasters, and their short, fast twisting, turning excitement.

Then I realized roller coasters and life have a lot in common.  So I started riding them, cause really -what the heck?

photo (3)

If there has ever been a lesson in the unpredictable nature of life, I am confident it has played out in the last two or so years.  And I am confident I have studied hard, and that I understand.  I understand that just when you think you might understand – you don’t.

You see, just when you think you may even comprehend the every-changing, unpredictable nature of life around us, there will inevitably be a way to prove to you you don’t have it quite right.

photo 2

There have been more funerals this year than I care to count.  Maybe its always like this, and I am just noticing now that 40 is behind me.  Or maybe not.  But there have been funerals for friends, for the brother of  friend, for my own father, for my uncle, the precious father of three beautiful adult children, and for my Grandma, and a well-loved great-uncle, and the grandparents and parents of friends… and…

As I sit here thinking about all of them I try for the umpteenth time to rationalize.  And I get farther with some than others.  Some will just never do.

But the ultimate realization is that it’s not really mine to figure out.  It’s not mine to decide how it fits in the grand plan.  And I’m trying to stop looking to figure it out.  Because, boy it can be exhausting.

photo 1 (2)

And as I sit here in the wee small hours of the morning, I remember – that painful Thanksgiving week last year, as Dad fought and fought, and I wonder why.  But, as much as I miss him, it’s not in a pitying kind of why.  It’s in a genuine curiosity for something I will likely never be allowed to understand.  Very much the way he used to ask me why he made it home from Vietnam and his friend Tommy didn’t.

It’s the same kind if why when Mom asks, why after being 18 years a breast cancer survivor, why she is “clean,” and so many have lost the fight.

As I listen to the rhythmic snoring of my husband, and watch my fidgety sleeping 11-year-old, I wonder.

I wonder how we ended up here – again, on the second floor of this hospital.  Today.  Now.

12 hours ago I thought I was tired.  HA!  What did I know.

450 miles in about 30 hours to celebrate the life of a great man, my uncle.  Lots of driving, lots of thinking, lots of observing.  Lots of admiration for his children, grown up children, who undoubtedly will make him proud forever with their compassion and good humor.  Lots of respect for his wife – living her marriage vows through all the crappy stuff with poise and dignity.  Lots of awe for my other Dad Ken, and GGMa, his mom, as they stood together, their original immediate family ripped in half in just over 2 years time.

12 hours ago I thought I would go to bed early.

But I ended up picking Meghan up from swim practice on the way home from Vermont.  And she walked out of the locker room and almost fell to the ground with tears.

“I can’t walk.  It’s my knee.”

And I checked off the list – Did you fall?  Did you bang it?  Did you hurt it doing dryland?  One at a time I asked the questions, even though I knew the answers.

This knee.  The one we’ve been waiting for since we stopped the celebrex had finally given way.

We had had hopes of finishing swim season first.  That was before we had to refocus our hopes to making it into urgi care without falling.

We were promptly told to get out, and get to an ER.  Fast.  The swelling was too big.

Still in my funeral clothes I raced home long enough to tell Felix to dress for work, and to get into some sweats.  A quick bag for Meghan and I and we were off.  This time to Lenox Hill ER.  Cause that’s where they do the knee surgeries.  And not that I’m trying to plan.  But just in case… Maybe we should be at the right place.

They contacted her doctor.  He’s sure it’s the AVM, but he’ll confirm in person in another hour or so.  In the mean time nothing to eat or drink for Ms. Meghan after midnight.  Just in case.

AND regardless – we remain BEATINGCOWDENS!

photo 3 (2)

 

Plot Twist!

We are thinking we are far from alone in appreciating this Facebook post from the Global Genes Project.  I mean these days it seems more than ever, I barely talk to someone whose life isn’t taking major, unforeseen “Plot Twists,” on a regular basis.

Global Genes hit this one spot on!

Global Genes hit this one spot on!

Whether it is the sick parent, or parents; the terminally ill or recently passed loved one; the stress of work, moving, new job, or the new house,  life has a habit of not going according to plan.  Brain surgeries interrupted, recurrent thyroid surgeries.  The list really goes on and on.  The only constant being change.  And not on our pace, or our time.  God alone knows the true plot of our stories.

Some have almost played out and are nearing the climax.  Others are barely introducing the characters.  And the older you get, the more you realize that doesn’t have as much to do with age as you might have once thought.

Sometimes I want to read faster.  To see what comes next.  To see how it all works out in the end.  Sometimes I want to hide the book in a deep crevice, in a padlocked safe and convince myself that if I just don’t look at it, everything will be OK.

My logical mind knows that neither is true.  And I, like everyone else, am left to brave each day doing the best I can with what I have, where I am.  I am left to do my best to be kind.  To realize everyone suffers battles.  To pay it forward when possible.  To pray for the best, and have faith when the worst hits.

522ha-christopher-robin-to-winnie-the-pooh-quote-promise-always-remember-that-youre-braver-than-you-believe

We plod along here.  The leg is getting worse.  Much worse.  The AVM is rearing its ugly head.  A “Plot Twist” indeed.  See in May when she spent a week in the hospital with severe gastritis, they said no more Celebrex.  No one except Felix and I got the gravity of that statement.  Celebrex had been in our lives since March of 2012, a month after the 4th knee surgery.  And the knee had been remarkably quiet.  You see in our lives, the life of Cowden’s Syndrome, Celebrex is used to treat AVMs – which are pretty common among us.  It helps with the pain, and it has an affect on angiogenesis, which affects the flow of the blood.

Except the Celebrex, according to the report, had caused a very sensitive GI tract to go totally haywire.  They said it caused 6 days in the hospital, dehydration, IV fluid, and a hot mess of tests.  Over and over Celebrex took the blame.  The drug she had taken peacefully for 2 years had finally said, “enough.”  The esophagus was so damaged it looked like a 70 year-old man belonged to it.  No more Celebrex.  No more NSAIDs.  At all.  We were scared.  Something had definitely gone wrong.

“PLOT TWIST!”  Cause those drugs were keeping her walking, sometimes running, swimming, and playing.

But we wonder, her Dad and I, if that was really that simple.  Our girl has been on some time of Protein Pump Inhibitor since she was 4 months old.  She takes pancreatic enzymes to aid her digestion of a very restricted diet.  And still we have always had to “pay attention.”  Maybe it was the Celebrex.  Probably it was the Celebrex. But what if it wasn’t?

When we left the hospital in May we figured 6 months before the knee was a serious issue again.  It started in August.  It’s getting worse.

On December 1st we’ll see the doctor who has dealt with it each time before.

But now we have an athlete.  A swimmer who LOVES to compete.  A swimmer with goals.  Attainable goals.  The time on Celebrex gave her time to get a taste of swimming.  And she likes it.  A lot.

So there will be some balancing to be done.  How long is it safe to wait?  How long can she stand to wait? How much of the season can she swim?  How much pain can she take? How big is the AVM?

We have things to focus on.  The February find raiser has us excited, and occupied.  We will keep busy.

The story will unfold.  Some of the best ones have multiple plot twists.

I mailed 15 pounds of medical history to the doctor who showed a hopeful interest a few weeks ago.  She’ll have it tomorrow.  Now let’s see what becomes of it.

Life doesn’t allow for planning.  Mom keeps telling me.  This year there is more up in the air than down.  And yet, the days will come, one at a time.  We will meet them, deal with them, and move on.

Cause really what other choice do we have?  What choice do any of us have?

Saturday as she cleaned the music blasted.  Katy Perry’s, “Roar”

…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…

…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…

plot-twist-ahead-sign

 

Kid of Achievement!

Today I turned 41.  And while I am incredibly grateful for the gift of life, and for “More Birthdays,” as the American Cancer Society once put it, my birthday holds all sorts of emotional challenges for me.

I have a memory for dates.  And seasons.  And events.  And people.  Especially people I love a lot.  And 23 years ago on this November day, my beautiful 6 year old cousin Meghan was invited to dance with the angels.  Childhood Leukemia weakened her body so, that she was not to stay here physically.  Yet on my 18th birthday I got the gift of the most spectacular guardian angel – and her name and her spirit live on in my girl.  Even with all the good, the day messes with me.  I tried explaining it to my Meghan last night, and the best I could give her was – 23 years become 23 days sometimes.  The pain just gets a whole lot more fresh.

And Grandma, Dad’s Mom got her wings just a few weeks ago.  After 88 years and a life well-lived, it was still tough to see her go.  Not even a year since Dad…

And last November 12th, on my 40th, my Dad was in the middle of what was to be the fight of his life.  We spent it together.  An unsavory appointment, and some legal crap I wish never had to be.

And this year a dear, compassionate, kind-hearted, fun-loving relative sits, so close to the end of his life here on earth.  My heart just gets full.

So, it came as a pleasant surprise last week when my cell phone rang and it was Gina from the Staten Island Children’s Museum, telling me that Meghan had been selected as one of this year’s “Kid of Achievement” honorees, for her advocacy work in the community.  The luncheon was to be held on November 12th.

photo 4 (1)

photo 5 (1)

“Of course we’ll be there.”  And I couldn’t wait to share the news with her.

We kept kind of quiet while she prepared her speech, and I sent her to school this morning with her backpack and her speech and a pretty dress.  Quite a swap from her typical sweats.

We arrived at the Hilton Garden at 11:15, sized up the room that we will be in for our fundraiser on February 15, 2015, and checked out the raffles.  We met the other honoree, a lovely young woman being honored for her work with Project Homefront.  The tables filled in and the event began.

When Meghan was introduced for this award, her advocacy was the focus.  Her nominee(s) knew her history.  They knew of her work, and her goals.

She delivered this speech with incredible poise.

When my mom got the call that I received this award, I was thrilled.  All of my advocacy began with me wanting to make a difference.  I am so honored, and humbled to realize that I am.

I was diagnosed in 2011 with a rare genetic disorder called Cowden’s Syndrome.  It affects 1 in 200,000 people and it starts from a broken PTEN gene.  The PTEN gene is the tumor suppressor.  The PTEN gene prevents benign and cancerous tumors, but since mine is broken I have a higher chance of getting these things. 

My Mom was diagnosed weeks after me.  A few months after that she was diagnosed with early stage breast cancer.  She had some pink ribbons around the house, and she got a pink ribbon Pandora necklace.

I knew about the gold ribbon for childhood cancer, and the puzzle piece for autism.  I knew there were many others, and that all these disorders had a symbol, and with a symbol comes a voice.  I had many medical issues, and went to the doctor all the time.  I knew there had to be symbol for people/kids like me; kids who’ve had eleven surgeries in eleven years, kids who’ve had countless tests and are treated like human pincushions.  Imagine, all this happens to prevent cancer.  There is no simple solution, only a constant set of routine poking, prodding, tests, surgeries and more!

We kept looking for a symbol.  We found one when we came across the Global Genes Project.  They stand for all rare and genetic disorders, their symbol is the denim ribbon, and their slogan is “Hope, it’s in our genes.”  But, there was not a necklace, no jewelry.  There was nothing to wear to help me show people, and tell the world about genetic disorders.

I asked my parents if we could get something made, and we did.  My parents found a compassionate and caring jeweler who created the mold for the necklace I am wearing today.  We reached out to the Global Genes Project again and again, in hopes they would sell the necklace too. Recently, they put a similar necklace on their market, and I can’t wait for it to become as popular as some of the popular pieces I have come to know.

Rare and genetic diseases are out there.  Most are very rare, but there are over 7,000 of them.  More work needs to be done individually and collectively, to get them the funding they need

In 2013, just about 18 months after our diagnoses, we celebrated “Rare Disease Day” which is February 29th – the rarest day- or February 28th on non-leap years, by handing out denim ribbons at our schools.  We had assemblies, and I got to talk to my peers about what it was like to live with a rare disease every day.

I have had 4 knee surgeries for a vascular malformation in my right knee.  I have a good deal of pain in my body, there, and pretty much all over.  Some days I feel great, and other days I can’t get too far.  One day in the spring of 2013, my mom was pushing me in a wheelchair to an appointment.  I was annoyed by the number of people staring at me and talking about me.  I heard things like, “lazy,” and “she’s not sick.”  I decided I could be angry, or I could do something.  While I definitely spent some time through the years being angry at some of the things – like running- that Cowden’s had taken from me, I decided instead I was going to DO something.

That night my Dad helped me design a business card that very briefly explains Cowden’s Syndrome.  I have handed out hundreds to those who stare, and to those who just care.  I like to spread the word, one card at a time.

This card was created out of her need to "teach" others about Cowden's Syndrome.

This card was created out of her need to “teach” others about Cowden’s Syndrome.

This year, right before Rare Disease Day in February, I had my thyroid removed.  Thyroid cancer is very common in young people with Cowden’s Syndrome.  My thyroid had been watched since my diagnosis, and it went from having 4 nodules in 2011 to 16 nodules and 3 precancerous tumors in 2014.  I was fortunate, but the surgery was rotten, and it has been hard getting the medicine quite right.  I have been called a “Previvor,” which is someone who has an organ removed before the genetic cancer that is looming has a chance to strike.

This kid is clearly a "FORCE" to be reckoned with!

This kid is clearly a “FORCE” to be reckoned with!

This year, for Rare Disease Day, I decided to raise some money.  We sold T-Shirts at my school and we had a fundraiser.  The money all went to the Global Genes Project, and it felt really good.

At my old school, in February, I also met the Borough President.  He took such an interest in my story, he made me feel awesome.  I have visited Borough Hall a few times, and love talking with him.  He has encouraged me to keep dreaming bigger and I will.

Two weeks ago my Mom and I signed a contract with the Hilton for a fund raising breakfast on February 15, 2015.  We will be raising money for the Global Genes Project, and the PTEN foundation.  The PTEN foundation is a new organization, working just for PTEN disorders like Cowden’s Syndrome.   We hope to have raffles, and T shirts for sale.  We plan to have music and fin.

We set up ticket sales through eventbrite, and we called it “Beating Cowden’s First Annual Jeans for Rare Jeans Fundraiser.”  Sales are open to anyone who wants to come support two great causes.

I am on a mission to spread awareness and raise funds for diseases people know too little about.  I will not be satisfied until each of them has the recognition they need, and the cure they deserve.

Thank you again for this award, and for encouraging me to continue my mission.

Here is a video of her speech.

And when she was met with a standing ovation there were tears in my eyes.  Tears of pride.

photo 2 (3)

photo 1 (2)

photo 1 (1)

One after another people approached her, and complimented her.

Not a single one would have known the strength it took for her to walk in the room today.  The pain was unbearable.  But she did it.  With grace and a smile.

And in addition to the compliments, there were offers to help.  Real, genuine offers.

We will Email some of our new friends tonight.  And with their help, in February we will blow this fund raiser out of the water.

Kid of Achievement indeed.

photo 3 (1)

World, you haven’t seen anything yet!

Here’s the link to our local paper….

http://www.silive.com/westshore/index.ssf/2014/11/staten_island_childrens_museum.html#incart_river

 

And while you’re at it – book your tickets for February 15th!

https://www.eventbrite.com/e/beating-cowdens-first-annual-jeans-for-rare-genes-fundraiser-tickets-14130024283

 

Competence, Compassion and Dedication? All at once!

Yesterday afternoon began very typical of so many of our days.  I left work, got Meghan at school, and instead of heading home we headed to 60th and 5th for a doctor’s appointment.

Trip to Manhattan, not a problem.  Trip IN Manhattan – super high stress.

breathe stone

Felix met us and I was able to let Meghan out of the car to endure the extra 20 minutes needed to get around the block to the parking garage I had printed a coupon for.  Silly as it may sound, that advanced planing has saved me hundreds of dollars – as our bill yesterday alone was a meager $35 for the lot as compared to the $63 it could have been.

Inside we filled out tons of paperwork, Meghan and I as new patients, and Felix in for his one year follow up.  It was the first time we’ve actually had an appointment as a family.

Last year we ended up with this doctor for Felix after a skin biopsy went bad locally.  It took weeks for me to obtain less than favorable results, news of unclear margins, and the potential wait of several weeks for a repeat excision.  I promptly transferred the biopsy slides and all information to a cancer specialty center in Manhattan and we met our doctor.  She had the slides reviewed and told Felix that not one, but BOTH sites biopsied needed further attention.  She took them to clean margins and ultimately diagnosed him with “Dysplastic Nevus Syndrome.”  He had been fortunate.  Precancerous lesions cleanly removed.  Annual screening from then until forever.

This year Felix squirmed a bit when I talked about his follow up, but I knew if we could all be connected to this doctor it would be a win all around.  Little did I know the scope of the score it would be.

Meghan, now with not only Cowden’s to raise her skin cancer risk, but also the genetic “dysplastic nevus syndrome”  potentially inherited from her father, needed a dermatologist in place for annual screenings – ASAP.  And for me, well, it was something I had been doing, but not with someone too good.  Time to ratchet it up a notch.

The doctor was amazing.

She immediately made Meghan feel comfortable and valuable, and spoke with her at length about the presentation of Cowden’s Syndrome she had experienced.  My daughter is incredibly empowered about her own health and held a 10 minute conversation quite nicely.  While I filled in a few gaps, the doctor told us she had worked previously at the NIH, (National Institute of Health,) and the NCI (National Cancer Institute) and was therefore, aware of Cowden’s Syndrome.  That alone is a rarity in our world.

But she took it much farther than that.  She wanted to know about the disease presentation in me as well.  She wanted to know how much had gone on before and after diagnosis, and how difficult of a path we had traveled to try and find knowledgeable doctors.  She was in constant thought, wondering about what she could do.  She spoke almost immediately about training her peers to be the front lines in screening for Cowden’s Syndrome, and how if they could identify classic marks like the trichilemmoma she removed from my forearm, they might be able to raise flags early and help save lives.

Harmless enough, common in Cowden's Syndrome, she wanted one confirmed though biopsy.

Harmless enough, common in Cowden’s Syndrome, she wanted one confirmed though biopsy.

Healing... less than 24 hours later.

Healing… less than 24 hours later.

She wanted to know what we had in terms of screening, and records.  What could I send her?  CDs?  Images?  PDF?  How fast?  She could have my CT scan reread for no fee.  Just send everything.  (Of course everything is in about 6 inches of binders.  So there is sorting and scanning to be done.

What is this http://www.PTENfoundation.org ? She wanted to know.  Can she refer people there?  What if she publishes in a dermatology journal?  Could she list the foundation?

My head was literally spinning – but in a good way for once.

I am going to present on you she said, both of you.  But no one has to know its you.

And finally a doctor who ALSO feels this way!

And finally a doctor who ALSO feels this way!

“Can I come?” asks my curious 11 year old.

“Of course…”

And as she took such a liking to Meghan she asked me who was managing her care.  When I said, “me.”  She was visibly bothered for me.

Someone should be looking after her.  Let’s think about what she needs.  And with that she rattled off doctors to handle things I couldn’t get my local doctors to address with a ten foot pole.   She told me I’d hear from her this week, and from some other doctors too.

I left with three negative exams, 6 months for me and Meghan, and a year for Felix.  I left with my belly hungry and my head racing.

Was I dreaming?  Had I really finally found the doctor to help us?

No one should have to travel your path alone, she said.  You need help navigating.

From her lips to God’s ears.  May she be true to her word.

In the mean time I have quite the homework assignment.

So as I sit with my “eventbrite” window open, excitedly hearing the “dings” of attention out February Fundraiser is generating – I am going to get started on perhaps the most important homework of our live

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

 

Grandma Gen

My friend in Australia reached out this week.  My “blogging buddy” sensed the silence meant things had gone awry.  Continents away; she knew.  She was right.
Writing is my release, my sanity, my way of keeping Cowden’s Syndrome and the fast paced, quick changing world around us in check.  Writing keeps me “honest” as they say.
And over the last two weeks there have been things to write about.  There have been CT scans and fears, and mishaps. and pain, and hunting down doctors and bickering over erroneous bills. But, for the last few weeks most of those things have taken place hastily, in transit.   I had some place else to be.

On Wednesday I got the call that Grandma Gen had died.

And as I sit here more than 48 hours later, I am sure it hasn’t sunken in.  Not really.

Even as I look out the windows at the changing leaves, and I am brought back to last October, as Dad was getting sicker, quickly, I can not really process.

DSC_1026

Gone too soon…

I sometimes feel like so much goes on so fast that sometimes the brain just has to protect the heart for a while.

I have an odd connection to numbers, so it struck me that Dad had died on a Wednesday too.  46 weeks ago.  And as we approach what was sure to be some challenging anniversaries, my family will gather this weekend to remember again, a life well-lived.

Wednesday was my cousin Christie’s birthday.  23 years old.  I so hope that she found her cake.  Because Grandma would have never let a party pass without some cake.

Mom Bday 04b

Wednesday was my cousin Kim’s birthday too.  30 years old.  One to be filled with joy.

I know girls.  I really do know.  A piece of my heart died forever on that November day, my 18th birthday when we lost Angel Meghan.  And last year, on my 40th, Dad and I went to the VA for a really tough appointment.  And then to get the legal papers signed.  And as he signed he said, “It’s your birthday!”  And I said, “There’s no one I’d rather spend it with Dad.” And there wasn’t.  And I don’t regret any of it one bit.  And in the end, that is what matters.  No regrets.

So to my cousins whose birthdays will never quite feel the same I can tell you to focus on the connection.  We all got a really strong angel in Grandma – but you girls… well you have something no one else has.  I’d love to tell you “Happy Birthday” doesn’t still flip my stomach a bit, but I don’t much like to lie.  What I can tell you is focus on the “happy” that was Grandma.  Eat your cake.  Always.

And Kim.  The wedding will be December 6th.  The shower is tomorrow.  So compassionate. Not just to Grandma, but to everyone.  Something unfair about the timing of it all.  But, I can tell you I have a good feeling heaven will be tossing SHOWERS OF BLESSINGS your way.

It’s almost impossible to sum up my Grandma Gen to someone who has never met her.

DSC_0995

Grandma was beautiful.  Not only in a physical sense, but inside as well.  One of the stories I never tired of hearing was the one of her and Pop’s first date.  And because there is no way I could do it justice here, I will simply tell you she told it often, and rarely did a detail change.  Decades after Pop’s passing, and 60 or so years since that date, her eyes showed the love in her heart.  And even in her last weeks whenever we talked about Pop she would say, “God gave me such a GIFT when He gave me your grandfather.”

They were parents.  Busy parents.  Grandma was the Mom to nine children – 8 boys, and a girl.  Most of us shudder at the thought of trying to raise 1, or 2, or 3 children.  For Grandma there were never enough babies.  Each one was a true gift from God.  So for 20 years she had her own, from my Dad to my Uncle Gerry, and everyone in between.  And then, just about three years after Gerry, my older sister Lisa was born.  There was never a break.  The house was always busy, and happy.

siblings

 

DSC_0670

 

All nine (1 of 1)

They took this shot as often as they could…

 

As a young child, the cousins just kept coming.  There was always a baby to play with, and Grandma ALWAYS had a smile on her face.  I believe between 1980 and 1990 – the core of the cousins, 13 if I have the numbers right- were born.  Some just a few weeks apart.  When all was said and done she boasted 27 grandchildren.  There were busy Christmas Eves on Kingsley Avenue for a long time.  There were swims in the pool, and dogs to guard the door instead of keys for the lock.  There were trips to “Bud’s” for milk, and always a sweet treat.  There were green mashed potatoes on St. Patrick’s Day that at the time just amazed me.  The little things.  So many, really, are the big things.

Older Grandkids (1 of 1)

 

When I got to call Grandma and tell her that she was going to be a Great Grandma, she let out tears of joy.  She was thrilled beyond words. 2003 was a good year – 2 grandchildren and 2 great-grandchildren.  9 more great-grandchildren have followed Meghan and Luke.  And she never resisted an urge to tell friend and stranger alike about how proud she was, of all of us.

The first "great grandchild"

The first “great grandchild”

Maybe one of the most special things about Grandma was that everyone had their own “one of a kind” relationship with her.  When you spoke to her you were the most important person in the world.  And we were all perfect.  In case the rest of the world missed the memo, or noticed a few faults along the way, you must have been mistaken.  Each of her children, her grandchildren, and her great-grandchildren could do no wrong.  And while in reality, we know we are all far from perfect, there is no denying that that kind of unconditional love felt awfully good.

DSC_0511

Uncle Paul and Aunt Rita’s 25th Anniversary

Grandma had a firm, strong belief in God, Jesus, and she adored The Blessed Mother.  She would often tell me, if you REALLY needed to get a prayer answered to pray to The Blessed Mother.  She’s get word to Jesus, and He’d never deny His Mother.

Motherhood was her core.  From her days playing with her baby dolls she prayed to be a mother.  And boy were those prayers answered.

And through the years as the family grew, and changed, Grandma could be found smiling somewhere.

Mom & Gerry O Johnny & Barbara (1 of 1)

Grandma with Poppy Hollywood and Barbara and Gerry O

Grandma and Aunt Shirley

Grandma and Aunt Shirley

I can say with confidence, that for all the years I knew my Grandma she never acted with malice in her heart, and always had the best of all intentions in all she said and did.  Somewhere along the line I became a middle aged grown up, and I’ve picked up a few things.  That pure heart, that is what defines people.  At the end of the day it is the knowledge that they did the best they could with what they had where they were at all times that really separates the pure in heart.

And as sure as Jesus said, “Blessed are the pure in heart, for they shall see God…”  I have no doubt my Grandma was welcomed into Heaven-warmly.

Because even after the stroke that was to be the beginning of the end, she was the most polite, well-mannered patient you ever could have imagined.  In the hospital, in the nursing home, to anyone who did anything for her, “Thank you.”  “They’re so good to me.”

Even as she waited for visitors, she stared at the picture of her children on the steps at Dave and Margie’s wedding, and she spoke with pride about each of them, and how their hugs warmed her soul.

DSC_0141

Sometimes when I was visiting her alone she would tell me about the places she had been.  Of course these were voyages of the mind, but I listened, as we all did, with intent excitement. These last few weeks were interesting, because you truly never knew who had been in before you, or who came after you, but we all had our times to listen and chat.

She and my brother used “FaceTime” so he could chat with her from Texas, and she sure knew it was him, somehow coming through my phone.  Shane may very well be the first Thompson male to have his facial hair approved of by Grandma.  He booked the first dance with Grandma at Kim’s wedding.  And without fail as the call would disconnect, she’d say, “Shane, I love that kid!”

And there were days my Dad must have visited with her when she was lonely, and her brothers, and some others who gave her comfort, because we heard all about them too.

Even as her mind took her farther from reality, she smiled.  She regaled us with tales of how we were all going to gather for family dinner.  She told me one day she was buying 2 houses to there would be enough space for all of us.  She would talk about the family being close, and how my cousins from Washington were coming with their families too! (We can dream!)

So this weekend we will gather together again.  This time for the first gathering without our matriarch.

And we will spend Saturday showering Kim and Nando with blessings for their upcoming wedding.  Because Grandma, who believed so much in weddings, and marriage, and love would have had it no other way.

Then Sunday we will get together in Harmon Funeral Home again.  And in Irish fashion we will have a loud celebratory wake for a woman who lived a full, happy life.  And we will look at pictures and tell stories, and we will laugh and smile.  Together.

On Monday we will travel, and bring her back to Pop.  21 years later they will be reunited again, a love story never ended, simply interrupted.

Together again - together forever

Together again – together forever

 

Then the real work begins. It’s our job now.  We need to stay focused.  We need to stay connected.  We need to stay together.

For so many of my cousins Grandma Gen was their last grandparent.  I have a guilty amount of good-fortune, and celebrate three grandparents still.  But. the significance and the importance is not lost on me.

In the end it is really only about one thing.

In our loss, we must remember their freedom.  In our loss, we must remember the gifts they left behind.  In our loss, we must remember they are never truly gone if we keep them alive in our words, thoughts and actions.

I miss my Dad.  I miss my Grandma.

Their physical bodies are gone.  Their energy, their spirit, their love remain.

Grandma Gen we’ll do our best to stay “on the right path,” as you so often said.  And at every dessert table there will be an extra piece of cake or a “dollie” shared for you.

Enjoy Pop, and Daddy, and Angel Meghan, and Bo, and all the rest of those you love so much.  No worries.  When the time is right we’ll all be together again.

Until then, it’s remembering – the Irish way.

Rest in Peace Grandma Gen!

May-the-Road-Rise-to-Meet-You

 

 

Wrong list…corrected and redirected!

It wasn’t too long ago in conversation with my husband that we started to talk about all the things that have gone on in our lives in the last 2+ years.

The life changing diagnoses of Meghan and I and the correlating surgeries and appointments. just about took control there for a while.

And Felix studied for and ultimately obtained his electrical license through the drama, and extensive, ridiculous hiccups in the process.

It all just blurred in and we never properly celebrated that accomplishment.

Meg changed schools.  Well, twice now.

We changed churches.

And the car accident, and the back trauma.

The rotted bay window, and the pool with the hole in the liner.

The loss of my father after a brief, battle with pancreatic cancer that had life changing ripple effects everywhere.

I actually sat down to write a list at one point.  Maybe I felt, albeit temporarily, the need to justify the un-returned phone calls, the missed dates with friends, the chaos shoved behind closet doors, and the overarching feeling of disorder in my life.  I wanted a way to explain why I felt like I was existing, not living.  Why every weekend was faced with catching up, and why we were missing each other.  I wanted to explain to the world how I was nutritionally healthier and stronger than ever before, and excited about my new products, but I was/am struggling to get out of my own way.

But this year has served up some intense wake up calls and I am trying to give them my full attention.  Because if any reality resonates clear it is the one that there is no guarantee of tomorrow on this earth.

I am not trying to be morbid.  Quite the contrary actually.

It is that very realization that caused me to shred that list I was making.  It’s counterproductive to dwell.  We must press forward anyway.  So why stay stuck in the past?

lion-king-the-past

There is a point in your life where you have to stop.  And look around.  And focus on the blessings around you.  This paradigm shift, while far from perfected, is a work in progress.

We have taken steps to transform the house, even if that stands in the way of clearing off the credit card bills.  Because, we are not extravagant, and never will be, but living in a neat, clean, organized house, when done well, is easier to maintain, and therefore an investment in our time together

We have family.  And lots of it.  At 40 years old, I can boast 3 grandmothers and a grandfather.  I am becoming more aware each day of the depth of the value of those relationships.  In addition to those 4 great -grandparents, Meghan has 4 grandparents of her own.   I am beyond thrilled that Meghan, now 11, has had the opportunity to have created life long memories with all of them.

And sometimes it is within thoughts of those closest to us, that we remember what is the most important.

remember who you are

 

And if I really remember who I am, I have to speak of my grandparents, most especially today Mom’s parents.

Early in my life, when things were jostled around and life was uncertain, they were there.  We lived in the first floor of their 2 family for the most formative years.  They fed us breakfast and met us after school.  They took us to sporting events and school activities while Mom worked 2 jobs.  They were just always THERE.

And Pop was there to fix things, and Grandma to play cards and cook with.

There were summers in Ocean City, New Jersey – the best summers of my life.

There was a whirlwind trip to Disney, and so many more adventures.

veterans day pop and gigi

I remember them as a young child, watching them.  They never separated, even for a few minutes, without a kiss goodbye and an, “I love you.”  This practice, perhaps formed after a lengthy service in WWII, and a full career in the FDNY seemed rooted in their deep understanding that we need to appreciate each other here.  Now.

And when we moved into Mom and Ken’s house there was the summer Pop and Grandpa Al sided the house.

And in my own house the woodwork.  The beautiful labor of love that is each piece of trim, each windowsill, each doorframe.  In his 80s when I bought my house Pop trimmed each piece, and even helped Felix put in the front door.  He shared his craft with my husband, and did so with patience and ease.

So much of the last 40 years of my life revolve around Grandma and Pop.

photo 2 (1)

Never a task too difficult.  Never say no.  Always giving.  Always sharing.  Always loving.

When I think about my list that I had started to write, and then I think about them, I get a bit embarrassed.

Born in 1919 and 1920 they have seen more changes in their lifetime than any other generation.  They lived through the Great Depression, and participated in World War II.  They spent years apart, in touch by letter, only to marry a few weeks after Pop’s return in December 1945.

They built a family, my Mom and my Uncle, and the family branched out.

Pop worked in the Fire Department, and at Zion.  Grandma took care of everything else so that there was never a thing out of place.

During their life transformations like – no phone to cell phones, and no TV to HD flat screens, and so many more have happened and they persevere.  Pop Emails and surfs the internet, and even carries a cell phone – though it’s rarely on!

Times have changed and things slow down a bit.  But it’s still a huge highlight to stop in for a visit and chat.

And when he can, Felix still picks Pop’s brain for suggestions of things he’s about to try.

All my life I remember them doing.  For everyone.  All the time.  They are the ultimate lesson in “pay it forward.”  They are for me the ultimate reminder of those vows we make before God and family and friends on the day we marry.  Regardless of the wording used, the sentiment is the same.  They promised to love each other, in good times and bad, in times when there was a lot, and in times there wasn’t, in times of sickness and in health, and to stand by each other for as long as God gives them life together.

Love my Grandparents!

Love my Grandparents!

Christmas 2009

Christmas 2009

Grandma's 90th birthday on 2010

Grandma’s 90th birthday on 2010

At Pop's 90th birthday in 2009

At Pop’s 90th birthday in 2009

And even in the toughest hours, they make it look easy.

That is almost 69 years of marriage as God intended it.

There are so many things I share.  And there are some that just aren’t to be shared.  But make no mistake about this.

I’ve  learned how to be a better person, and a better Christian from my grandparents.  I learned how to be a better wife, from my grandparents.

This doesn’t detract in any way from the love of all the other influential adults in my life, including my own parents.  We learn different things from different people at every place in our lives.

But today, it’s about Grandma and Pop.  And how their selflessness and pure love never cease to amaze me.

I pray that though all adversity, my husband and I may set the same example for our daughter.

We are deeply, thoroughly, and completely blessed.

And when making lists its far best to make lists of your blessings than your struggles.

billy-graham-quote-our-days-are-numbered-one-of-the-primary-goals-in

 

 

Vascular Road Maps and other Cowden’s adventures…

I sometimes hate the saying that things work out the way they are supposed to.  Sometimes I just don’t buy it.  But, then there are other times.

I have suffered with varicose veins since I was in my early 20s.  I had 2 stripped surgically before I was 30  I had 5 VNUS closure procedures in 2011.

Over the years I have tried compression stockings, switching to comfortable shoes, losing almost 40 pounds, and the veins just keep on bulging.

It gets to the point that the throbbing in my legs is the last thing I feel before I close my eyes, and the first thing I feel when I wake up in the morning.  During the day I get distracted.  And when I get home at night to take off my shoes and switch to pajamas, the size of my legs is noticeably larger.  The swelling is evident.  The blue veins bulge.

Although this is far more than a cosmetic issue, the ugliness and the irony doesn’t help.  Last summer I bought shorts.  In a size 2.

 

This is not my leg - but a close comparison...

This is not my leg – but a close comparison…

This summer I barely ever wore a pair, and despite having a pool at home, I never put a bathing suit on.

As Meghan has battled with her AVM (Arteriovenous Malformation) in her right knee since around 2009, I have learned more about the vascular malformations that can be associated with the PTEN mutation that causes Cowden’s Syndrome.  It seems the connection is documented, but small sample sizes make it hard to study the specifics of this rare disease and all its variations in detail.  See there are differences even within the PTEN mutations that link us all.  Some are germline mutations, some are frameshift, some are missense, others nonsense.  AND, there are further specific differences too complicated for me to process.  It seems, in layman’s terms, that each mutation manifests slightly differently, although there are major criteria that link us together.

And, it seems that the frameshift mutation Meghan inherited from me, is likely at the root of our vascular problems.

Another symptom I have dealt with for years, explained, but not gone after this PTEN diagnosis.

I had an appointment with a highly recommended vascular surgeon on Tuesday. I expected what I have come to expect.

There was the sonogram.  The attempt at settling out the roadmap of veins, so many of which have already been treated. It is no easy task, and I leave them at a disadvantage because I have had my vascular work done in several different facilities.  (You can read that as difficult to please.)  Though for the first time I was told that the deep veins in my left calf are so dilated that they are at great risk for blood clotting.  The blood sits stagnant there.  That apparently is not the most intense of my issues.

winding-road-4849145

Then there was the visit with the doctor.  A young, bright eyed, refreshingly competent doctor who was very interested in my Cowden’s Syndrome, and my previous abdominal surgeries.

He asked if things got worse with the vein in my leg after the tubal ligation in 2011.

“You mean the hysterectomy?”

“No, that was the following year.”  He was reading from a sheet I had given him.  He was right.

I guess somehow I had blocked the tubal ligation which had become unnecessary less than 12 months later when Cowden’s and a uterine polyp (post breast cancer) necessitated a full hysterectomy.

“I’m not sure, why?”

“I am wondering what is causing these veins to turn.  And I have to look at every possibility.”  As he places his hand on my abdomen.

“How long had that pulsing been there?”

“Um… I don’t know.  (Feeling incredibly dumb for ignoring my body) Why?”

“Well, I won’t even consider surgery without some major tests.  First I want a full abdominal CT to check for vascular malformations.”

Now truth be told I wasn’t shocked to hear this.  I had a nagging, behind the ear voice telling me to get that pulsing checked out.  But I had met with a vascular surgeon in July and that turned train wreck.  So I was a bit delayed.  I also I guess didn’t really like the fact that he could feel the pulsing too.  I thought, well I thought that was just mine….

So I left with a script for the CT, waiting for authorization, and a script for blood to assess my kidney’s capability to handle the CT dye.

And as I tried to process that, I thought of everything.  I ran the gamut from aneurysm to AVM.

As I washed my hair the next morning (I do my best thinking in the shower) I had one more thought.

MY SPLEEN!

respectthespleen

I had never mentioned my spleen.  The hamartomas/lymphangiomas/masses on my spleen, the largest of which are 4 cm round.  I was told they are vascular.  I have been watching them with periodic MRIs and I was told as long as they stayed stable I could keep my spleen.

I really hope they aren’t misbehaving.

I like my spleen.

spleen

I also like that this doctor cares enough to check everything out first.

Pain in the butt?  Absolutely.  Life-changing?  Maybe.

The other doctor was ready to take the vein out in the office with no prior testing.  This guy told me I need an ER and tons of pretesting.  You know what?  At least he takes things seriously.

So now I wait.  For authorization.  For testing.  For a whole host of inconvenient to schedules to processes.

And fortunately there isn’t much time to waste on worry.

Life is busy.  We squeeze what we need to into the crevices.

We can’t let Cowden’s Syndrome distract us from this life that needs living.

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

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

 

It’s following me….

Much like the Cowden’s Syndrome that will never go away, that will follow us for all our days, the pile stalks me.  I swear it mocks me.  Sometimes when I am not looking, and other times right in front of me.

In the pile are, well all the things you’d expect in a pile; bills that need paying, junk mail that needs sorting, statements that need shredding, or filing, problems that need phone calls, etc. etc.

The pile used to be in the basement.  But it was dingy down there so my husband bought me a laptop and the pile followed me upstairs.

Since it had no proper home on this floor, it could often be found on the dining room table, or on the counter, or any number of other places.

paper_pile_on_desk

My office has been finished.  A bonus to me after Meghan’s big move upstairs.  I have a big girl desk, and places to put all the things I need to manage our house, our doctors appointments, bills, authorizations, and complaints, and my quest to help others find the path we’ve begun walking towards better health and financial freedom.

Slowly I am beginning to decorate.  The curtains and blinds have arrived.  The printers are hooked up.  The electrician I love neatly hid the wires.

The photo albums from years and years of my continued obsession with printing photos even in this digital age, line the wall.

The closet stores years of teaching materials, too outdated to have in my classroom, but current enough that I need to keep them – just in case.

Leaning on the wall to my right is a photo I took from my Dad’s apartment, just sitting there waiting for me to decide what to do with it,  and as I type I sit in his chair.

And, just to my left, as I work diligently to ignore it, sits the pile.  It found its way right into the new blue room with the gray curtains and white furniture.

I don’t like piles.

Partly because they are messy and out-of-order, and as I have said before, far too much of life is messy and out-of-order for me to have piles on top of it all.

Partly, they worry me, as there has been known to be a bill sitting in one of those piles, or a newspaper with a message that needed reading, or this week’s surprise, notification of a car recall.

Despite how many hours I spend working on making it go away, I am at points close to losing hope.

There are times I feel pulled, and stretched in so many directions, that I am quite sure NONE of them is getting the best me.  Especially if they’ve sent notification of anything via mail – because it may just end up on the pile… and then – who knows?

If you’ve been reading for any stretch of time, hopefully by now you know I am not hopelessly out of touch with reality.

I get that there are many demands on all of our lives that sometimes stand in the way of a neat and orderly home.  I really do get it.  And I am trying to find a place where I can live happily somewhere in between.

I am a happily married Mom of one, who, for the purposes of all after school activities, and weekly medical appointments, is single.  My husband works much farther from home than I do, and his day ends later.  End of story.  The afternoons are all mine.  And they work out just fine.  And unlike many couples, we share what we can, and he being a far better cook, prepares something for us to eat.  Quickly.   Before I head out to whatever has the night tied up.  Whether it’s a doctor’s appointment, or spending some quality time with a relative who isn’t well, or attending a meeting, at my school, or hers – more often than not there seems to be something on the schedule every blessed minute.

Which leaves precious little time for friends, and phone calls, and random get-togethers, and fun.  And well, it explains why the pile – although tame at times, never seems to go away.

Yesterday I listened to a 2 hour webinar for a grant I got for work.  But I didn’t have work.  Since it had to be after school anyway I scheduled it then to be sure I’d fit it in. Then I printed letters, and log-in cards for the computer program for the 32 kids across three classes that will be doing it.  And while I am excited to see their progress, I was not excited to be doing that.  Nope.  Not one bit.

And there was the grocery shopping, and the dusting, and the generalized dog fur removal.

And the list and the questions started going like mad in my head,

  1. The dermatologist – why can’t I get that woman on the phone for the appointment for the three of us?
  2. I better confirm the date for our Rare Disease Day brunch in February before we lose it.
  3. How can I figure out how to set up online payment for that?  I really have to check.
  4. Make the appointment about the car recall ( on a Saturday so I can sit for hours since we only have one car.)
  5. And the car needs an oil change and inspection.
  6. What about that car insurance lady who never called me back – got to get on her
  7. And the pictures from vacation – almost 2 months ago…
  8. The outside of the house needs a day all onto itself
  9. And the dogs need baths, badly
  10. What is the real reason Meghan’s foot X-ray looked like that?
  11. Why is one of her feet over 1/2 inch off in size from the other?
  12. What’s with the new knee pain?
  13. When do we have to bring the swollen knee to the attention of the AVM surgeon who said, “as long as she’s not symptomatic?”  Can she last swim season?
  14. Can she handle this schedule?  I mean without getting sick?  Cause she’s close, and there’s a lot going on, but I don’t want to say no to all this good stuff….
  15. And when, WHEN, WHEN….will I finally visit with some friends?
  16. STOP………

My husband sat down with me on the other chair in the office.  The panic was beginning to escalate.

Take a breath.  You need a break.

A BREAK? HOW CAN I TAKE A BREAK? DO YOU KNOW THERE IS LAUNDRY, AND MEDICINE, AND DUSTING, AND BILL PAYING, AND…..HAVE YOU SEEN THIS PILE?????????????????????????????????????????????????????

pile of paper

Sometimes I find the notion of NOT getting things done maddening.  But, if we are very fortunate, we have a spouse, or a soul mate who balances us perfectly.

He knows I need to step away.  He knows I need to visit some long-lost friends.  He also knows I need to spend lots of time with people who aren’t quite well.  And, he knows I need to spend time with MY family.

So today, we went pumpkin and apple picking.

photo 2

A nice farm, about 45 minutes from home.  Just our speed.  The pumpkins were kind of “placed”  off their vines, but nice all the same.  The apples were fantastic, and the walking was almost reasonable.  For about 20 minutes.

The the pain started to show in the eyes of that beautiful girl who just wants so badly to do what everyone else is doing.  Walking. Repetitive motion.  Fractured foot, bone chip, or something way deeper?   At that point all that mattered was saving the day.  And there was Daddy.  And his cape.  As he bent over and swooped his almost 5 foot 4, 11-year-old onto his 6 foot shoulders.  And they walked like that for an eternity.  Picking apples.  Chatting.  Laughing.

photo 4

 

photo 3

And she got down long enough for us to take a few pictures.

photo 5

Then, as we walked to the car the knee buckled and that was it.  Back up on the shoulders again.

And even in pain as we got into the car after less than two hours, the proclamation that it was ,”FUN!”  Took some of the tension out of my shoulders.

So we stashed our big girl in the cart in Ikea, even as she told us we were breaking the rules.  And we looked at bedroom furniture for the grown ups, and headed back to drop some apples with the great grandparents.

I had a special place in mind for the 4th mum in a set I had bought at Costco, so after taking care of that, and another special visit, we even watched a TV show together.

And you know the best part of it?

The pile is still in exactly the same spot.  While it didn’t magically disappear, it also didn’t live up to my fears of having it take over the room.  I have to get in front of it to shift my focus to the things I enjoy, and I will get there…

Meghan had a nosebleed tonight.  A wicked one from the days of old.  And the knee never did bounce back.  She’s in our room.  Asleep with Felix.  There will be a spot for me once I have cleared my head.

My heart, as a mom, and especially as the mom of a chronically ill child, will never be a place of peace.  But with work, even with the obstacles, Cowden’s will constantly toss – we can be happy, productive citizens.  This Syndrome does NOT own us.  It takes one hell of a wicked set of stamina to stay in front of it, physically, mentally, emotionally, and in a practical sense too, but we’ve got this.

Thursday maybe the ENT will look down at that damaged esophagus and offer up some good news.

Until then, it is our hope that whatever your struggles, and we know you all have many in your hearts, minds, bodies, and spirits, that you are able to find comfort in those you love, and that even if only for a few hours, the “pile” seems a little less insurmountable.

photo 1

 

 

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.