AHCA, High Risk Pools, and My Child’s Future

I am angry.  I am hurt.  I am worried.

I have stayed out of politics through the entire tumultuous 2016.  I have serious issues with many politicians.  I am not here to talk about them directly.  I am here to talk about an issue that transcends political party affiliation.  I will not engage in a debate about Democrats or Republicans, or the should have/ would have/ could have game that people like to play with each other.

This is far  more serious, and more important than any of that.  This is about my daughter.  It is about her life.  Her future.  And, it is about the lives of millions of American citizens, myself included.

I will concede that there are problems with health care in America.  I will even agree that healthcare the way it exists today needs change.  However, when I look at a situation that needs change, I think it through carefully.  I work through every detail. I weigh out repercussions and ramifications.

The Bill that passed the House today, in my opinion was put together in an attempt to score a “win” for our President.

When millions lose. No one wins.  That’s not just the math teacher in me.  That’s real.

Three years ago I was in a car accident.  It was a terrible situation, and I was T-boned at an intersection.  I will contend to my dying day that the truck that barreled through me was speeding so fast it never should have made it to me before I cleared the intersection.  I had the stop. I stopped.  He never saw me and it took almost a block, in a school zone, for his truck to finally stop moving.  Because the stop sign was mine, I was assessed with most of the fault for the accident.  It made me furious.  I was told speeding could not be “proven” despite the absence of skid marks.  The other 6 accidents that happened at that intersection in the months preceding were not helpful either.  In the end, I was grateful for my life.  I walked away and took the penalty on my insurance.  I paid that accident penalty for three years.  And, while it did not make me happy, I did it.   The accident penalty was annoying, but affordable, less than $200 a year.

The car accident happened once.  It might happen again, but it will not happen regularly.  I am 25 years driving, with one accident and no moving violations.  I have proven I am not a reckless driver.   I have control over that.  Full control, and I take my driving very seriously.

I also take health very seriously.  Unfortunately, there are aspects of my health I do not have full control over.  My daughter and I have a rare genetic disorder called Cowden’s Syndrome.  She is 30 years my junior, and at 13 and 43 we have seen the inside of an operating room close to 45 times combined.  Cowden’s syndrome causes tumor growth.  It carries with it an astronomically high risk of many cancers, most notable breast, thyroid and uterus.  It carries also significantly elevated risks of kidney, colon, skin, and other cancers.  Many of our tumors are benign.  Some are not.  The only route we have to long term SURVIVAL is constant surveillance.

Many doctors recommend surgery to remove things that are high risk.  Thankfully, that suggestion proved life-saving for me in 2012 when a “prophylactic” bilateral mastectomy revealed stage 1 breast cancer.  I was fortunate.

Two months ago I had surgery to remove a benign tumor from my vocal cords.  It was impairing my ability to breathe and speak.

In 16 days my daughter will undergo the 18th surgery in her young life – the 7th on her right knee.  Cowden’s Syndrome carries a high correlation to vascular malformations like the Arteriovenous Malformation (AVM) that grew in that knee.  After 6 embolizations to curtail the blood flow, she now deals with the repercussions of having blood lingering in the knee.  There is wearing away of tissue causing the patella to shift.  There is extreme pain, not just in the knee, but all through her body.  Her right foot stopped growing years ago, but the left one kept at it.  Now a full size apart,  different in length and width, her 5’8″ frame feels the repercussions with every step.  She is regularly at the chiropractor in attempts to minimize pain medication and keep her in alignment.  Pain medication caused such GI distress in 2014 that she spent a week in the hospital.  Cellular changes in the esophagus are not good in anyone.  At 10, with a condition that causes tumor growth, it was certainly another wake up call.  We gladly purchase 2 entirely different shoes every time she needs a new pair.  We are grateful she walks.

That is just the tip of what this child has endured in under 14 years on this earth.  She has had her thyroid removed with 19 nodules and suspicion of malignancy at the age of 10.  We still work to balance levels synthetically.  She had had TWO D&C procedures to eradicate suspicious tissue in her uterus.  She has had a lipoma removed from her back and vascular malformations from each palm.  She has lost her gall bladder.  She fights, stands up.  Moves forward, and gets smacked in the face again.

Soon after our diagnoses in 2011, another mom told me Cowden’s Syndrome requires vigilance.  I got it.  I am on it.  All the time.  And with the GRACE of God alone, we are walking the path the best way we can.

We average between 6 and 10 appointments a month between us.  The copays and travel costs are often daunting.  But, we are fortunate.  We have two good jobs my husband and I tell ourselves.  We have good insurance.

We are careful with every morsel of food that enters her body.  We eat largely organic and non-GMO to let her body use all its energy to stay healthy instead of fighting contaminants.  Even at that she is acutely sensitive to almost all gluten, dairy and soy.

We treat as naturally as we can, often incurring bills, as these treatments are rarely covered.  Yet, still we prioritize health because we realize its value.  And we remember how fortunate we are.  We have good insurance.  We have two good jobs.

My daughter is awesome.  And, not just because she is my daughter.  She is a respectful, kind-hearted young lady.  She has the voice of an angel.  She acts in the plays at school.  She reads for fun.  She swims passionately.  She is an honor student.  She talks about her future, and what she will do with her life.  I have no doubt she has the capability to make a real difference in this world, regardless of her career path.  Today however, I am left to wonder.  Will any job ever be enough?

If the AHCA passes the Senate, we will likely be placed in an unregulated “high-risk pool.”  This is not like my car accident.  This is not a minor inconvenience.  This has the potential to decide the course she will have to take with her adult life, as her health issues will not go away.  We have this genetic mutation with all its risks and ramifications for life.  Lifetime caps, potentially re-instituted will likely be met in her 20s, if not before.

There is no way at all to prove where the mutation came from.  I’d ask you to indulge in a theory with me a moment.  My father, a Vietnam Veteran was heavily exposed to Agent Orange as a Marine in 1967-1968.  My mutation was traced to my father.  He never manifested with Cowden’s Syndrome, but somehow passed that mutation on to me.  Wouldn’t it be ironic, if that toxic exposure in the jungles of Vietnam, in an attempt to fight for his country, ultimately led to this condition in his daughter and granddaughter?  Dad died in 2013, pancreatic cancer that may or may not have been Agent Orange related.  I’m glad he is not here to see the reality that our government may be on the cusp of turning it’s back on his family.

I was raised a proud American.  In addition to my Dad, I have three Grandfathers who were World War II Veterans.  I value the principles this country was founded on.  I am grateful for the freedoms I have in this country.

I have not been raised to use the phrase, “that’s not fair,” but I will ask you to consider a few things.

Last night as I watched the news my head spun as I heard elected officials allege that people with pre-existing conditions have not led good lives.  I am not here to compare, but I will tell you our “pre-existing” condition has NOTHING to do with lifestyle choices.  And if you do not like the site this link came from – scroll to the video.  Hear it from his mouth.

http://www.politicususa.com/2017/05/01/gop-congressman-people-pre-existing-conditions-bad-people-pay.html

I can name dozens of people off the top of my head, as close as within my own family, that would be grossly negatively affected by the establishment of “high risk” pools.

Should a cancer survivor, an MS patient, a diabetic, a person with a brain tumor, a rare heart condition,  a genetic mutation, or countless other conditions be forced to make decision on the path their life should take because they are too expensive?  Are they less valuable?  Do they matter less?

Should we be asked to decide whether or not to keep critical screening appointments, or have access to necessary medication blocked by cost?

We have two good jobs, and this whole thing terrifies me.  But, I will not be controlled by that terror.

This post will reach my Senators today.  Social media can be used for good.   I have a voice.  I will not be quiet about this.

Tell your story.  And if you can’t find your own words, share mine.  Let our Senators know that we are real.  We are not numbers.  We are not a cost-cutting measure.  We have faces, and names.  We matter.  We all matter.

We are determined to remain

#beatingcowdens

We will not be silent!

Light Through the Lens…

I think I blinked, and the calendar changed from October to December.  Some weeks I can do nothing more than plan day by day, because to look too far is overwhelming.  But, I “lost” the fall in a beautiful way.  I lost it shuffling my girl to places she loves to be, and helping her apply to high schools she is excited about.  Four years ago I could not have imagined she could keep this schedule.  She battles for it every day and I admire every ounce of her determination.  I take nothing for granted, and I know a huge “doctor cycle” is soon to be upon us.  Meghan’s appointments begin late this month.  Mine will overlap, likely culminating in vocal cord surgery.  But, for now, for this moment, I am grateful for this chaos.  The hint of “normalcy” is not to be left unappreciated.

Today though, I blocked out some time.  Today I needed some time to sit in my office and look around.  There are beautiful images on the walls of my office from New York City to Washington state – and places in between.  Each is carefully watermarked “Leon G. Thompson,” a process that took my husband countless hours.  There are thousands of such images on my laptop and several backup drives.  You may have no idea who “Leon G. Thompson” was, but I can tell you these pictures are more valuable to me than any you’d find in a museum.  Leon G. Thompson was my father, and these pictures are what he left behind on 12/4/13 when cancer snatched him from us far too soon.

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“A Few Good Men,” has been far more than a movie title in my life.  I was blessed to have 3 grandfathers that shaped who I am.  I am equally blessed to say I have had two fathers mold me into the woman I have become.  My Mom’s husband Ken came into our lives when I was a teenager, but he has been, and continues to be an unshakeable source of everything from “fun facts,” to computer tech, to house repair and all things in between.  There is a special place for a man who steps into a marriage with 2 teenage daughters in tow, treats them as his own from day one, and never skips a beat.

My father, well… let’s just say the early years were rocky.

What I know now, but I didn’t know then, clarifies a bunch.  Dad, a Vietnam veteran came home lost.  The earliest years are peppered with memories that don’t leave “the warm fuzzies.”  The years after that hold memories of fun visits.  Dad would come by sometimes.  There were movies, and visits to the park and the zoo.  There were restaurants, and exciting novelties.  But, there was not consistency.  There were chunks of empty time.  There was a lot of wondering.

Contact got more steady in the teenage years, especially after my brother was born.  There were more visits, and more phone calls.  But, history sometimes repeats itself, and there were years that faded away again.

Later, after high school, and probably after college too, there was more.  Maybe I was ready.  Maybe he was.  I’m not sure.  But, slowly and carefully, over years, a relationship began to form.  By the time I got married, I was able to dance with my Dad, (and Ken, and my Pop :-)) and I will cherish the memory forever.

After my daughter was born, he started showing up more.  And I liked it.

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Hard times came for Dad, and the restaurant industry finally failed him.  And that low for him, was the point our relationship became solid.  Nothing happens overnight, but he was here.  Close.  Interested.  Available.  He helped pick up Meghan.  He came to birthday parties, and dance recitals, and swim meets.  He came by for Father’s Day and even celebrated a birthday with us.

It was during that time that he first spoke the words I’d been waiting to hear since the second week of my Abnormal Psychology class in college.

“I have PTSD.  Do you know what that is?”

“Yep.  I know.  (and I exhaled a sigh I’d been holding in for years..) And it all gets better from here Dad.”

He was stunned.  He had no idea that his entire adult life spent making poor choices, ducking relationships, and often shying away from those who loved him most, were just a few of the symptoms of PTSD. (Post Traumatic Stress Disorder)  He couldn’t imagine that I had already pieced together that unspeakable horror encountered with his Marines in the jungles of Vietnam had impacted, to the point of changing, and really shaping his entire adult life.  13 months in that war, and not a day, a single day, ever went by without it influencing his thoughts and behavior.  I was able to pick up from a text-book the reasons why he had shied away from our relationship.  I was able to know in my heart that he couldn’t risk expressing his love, showing up, or being truly “present.”  But, in that moment, hat moment when he said it THAT is where I got him back.

I can’t say I remember the day.  And I may be wrong on the year too.  But, it was sometime around 2009.  Finally, he was working on his own healing.

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And he worked hard.

We spoke more regularly.  Once a week usually.  Sometimes it was his turn.  Most of the time it was mine.  As I struggled through raising a chronically ill child, he became my sounding board.  He was my confidant of all things.  He was where I went to bounce the tough decisions.  Because, life had left him a great listener.  Raising a child with a rare disease, means often having to make really tough choices alone.  When your disease affects only 1 in 200,000 people, experience with it is limited.  When Cowden’s Syndrome manifests differently in each of that small number of patients, including myself and my daughter, there is an even lower confidence interval with doctors who often just have no idea by no fault of their own.

It is hard to hear over and over again that a child is ill.  Especially, when it is your child, or your grandchild, or one you love so much.  I have had to make so many unorthodox medical decisions, that I often just needed someone to hear my thought process, and let me analyze, and over-analyze. I have gone against the doctors to trust an instinct that was strong in my mind and my heart.  Dad was the one who could hear it all out.  He heard me without speaking.  He listened attentively.  He offered advice only when I asked, and offered encouragement always.  These were not situations where I just needed my ego stroked.  These were tough conversations to have, and he never ever shied away from one.

He simply would bring me back to reality.  He’d ground me by telling me to use Meghan as my guide.  Check on her health, physically and emotionally.  Focus.  Trust my instincts.  Be able to correct wrong decisions whether they are mine or theirs.  Still now, three years later I find myself aching for those conversations.  She is stronger.  She is tougher.  She is amazing.  But, there are still so many battles to face and so many difficult decisions to make.  That’s when I retreat to my office.  I sit in his chair, and I look up at the path of snow in central park, or the Washington mountain top, or the waterfall, or the rainbow and I think.  I talk the conversation through as if he were here.  Because I know he is.  I just have to listen really carefully.

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Dad told me once that I understood PTSD because Meghan’s medical battles had left me some ways in a similar state to him.  When she was younger, and so sick, that perpetual fear of losing her, the hospitalizations, the surgeries, left me with a need to he “hyper” aware all the time.  While I could never profess to connect this to the horrors of war, he did.  And I think it allowed him to open up with some of his own stories.

Through those years I heard tales from his mouth I had never known.  I heard of battles, and losses and names of people, and places.  I listened so attentively.  Quietly.  As he had done for me.  Sometimes I even took pen and paper to write down his story.  Because I wanted to hang on every word.  Because you just never know.

I found out Dad was sick when I made that Friday night phone call in October 2013.  His voice sounded a little off and he told me he was in the ICU at the VA Hospital in Brooklyn.  When I asked him if anyone knew he said he wasn’t too sure.  But, he said, “now you do.”  And he laughed, as only he would at that moment.

I got to the hospital the next morning and we went through the details.  At that point no one knew anything.  Confused doctors was a topic we had spoken about at length.

The 10 weeks that followed were just a long blur.  There were about 4 weeks of me forcing his hand to allow me to take him back and forth to his appointments.  Sometime after that he admitted he couldn’t drive himself.  That was a tough day.  I had already called in my sister, and it was time to reach out to my brother in Texas.  Family meeting.  The “team” assembled.

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And through the some of the toughest weeks, I bonded in ways that can never be broken, with a sister I have always had, and a brother who I was getting to know better than I ever had.

Dad was admitted to the VA on Thanksgiving of 2013, and one week later, on December 4th, we were by his side when the angels came to free him.  No more suffering.  No more PTSD.  Pancreatic cancer at age 65.

I dialed his number for months after.  I still know it in my heart.

I spent the months after he died cleaning out his apartment.  Dad was not a man of many “things.”  His iPhone held no Email, and only one photo.  “Never want to put too much information in one place,” said the man who in his soul operated always with the mentality of a 19-year-old combat Marine.

As I cleaned I took every single scrap of paper he had ever written on and clipped them together.  I laminated them.  It was to be the only way we would ever “talk” again.  It is Dad’s quotes scattered through this piece.

He loved light.  And I guess for a man who had spent so much time fighting the darkness, his love for light made sense.

Dad was, to our family, and friends, a photographer.  “Tom” would have a camera around his neck at all times.  He took joy out of capturing happiness.  He took pleasure at photographing family events, and sharing his photos with everyone.  As we sorted through the pictures, in the months and year or so following his death, we saw some incredible images.  We sorted out the family shots from the scenery ones.  We put up a sharing site for all those family images in case anyone had never seen them.  And we protectively shielded his “scenery” images, and carefully watermarked them, and kept great pains to keep them off the internet.

At some point we will organize an art show in his memory.  We will print, and sell his treasures.  We will find a place to donate any profits that will honor his memory.  We will let the world see what he saw.  Dad used that camera lens to showcase the light.  To view the beauty in the world.  Consistently, when I look around I see “Light Through the Lens…” and in doing so I keep his memory alive.

Dad did not leave us rich with money, or objects.  He left us rich with visions and memories.  The former keeps you satiated for a little while.  The latter can keep you fueled forever.

The last gift Dad left for me, was one I did not see coming.  In the weeks preceding his death it had become apparent to me that there was a specific incident in Vietnam that clearly should have warranted him a Purple Heart.  I gathered data for him, presented the case, and even after denials came in, and he had passed, I kept fighting.

Holly, a treasure in Dad’s life and ours, had held onto a list of names and addresses from a Marine Corps Reunion they had attended many years prior.  I reached out to every Marine in that list, and if they were still alive, they reached back.  Over 20 of them.  45 years later.  I grew up knowing Dad had 7 brothers and a sister.  I had no idea of the Marine brothers scattered around the country.

I have had the pleasure of meeting many of them.  And this past summer I brought Meghan to meet a few too.

Alan was the first to answer my letter.  From West Virginia he called to tell me he remembered crossing time with Dad.  He researched the story I told him about the incident.  He found it totally credible, and helped me exhaust every option and every appeal to the Department of the Navy.  Ultimately that battle was lost on what I call a technicality, but by that time I had a friend and a confidant in Alan, previously a stranger.

My Dad, although not loyal to a particular church, by the time he died had a solid faith in God, forgiveness, and an afterlife.

I do not know the book this came from, but I found this among his clippings…

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My Dad in his passing, solidified my relationship with my sister, essentially “gave” me my brother who I had never really “known” but will NEVER let go of, AND, secured for me a confidant in Alan, and gave me the gift of loyalty that Marines save for their own and their families.

He left thousands of photos.  Snipits of his own words, and memories of times that we got it right.

I sometimes always wish that he would answer when I called him on the phone.  But, I know.  I know that he is flying free.  And I know, that while he needn’t be saddled with the cares of this world, that he checks in.  That he is nearby when I need him the most.

So when we are driving in the car and Meghan snaps a shot of a sunrise, or the light coming through the clouds in the sky.  When she sees the beauty of the world around her.  When she looks for the good. When she keeps her friends list short and neat, I see my Dad.  I feel him.  I know he’s right there for that moment.

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Courtesy of Meghan on a road trip to WV to meet the Marines.  Always being guided by the light…

Only when you love deeply do you feel great loss.  They all hurt.  The oldest to the newest.  I can not change the way I love.  When I love it is with my whole self.  Otherwise, why?

This one hurts differently because it took so long to get it right.  But, I rest with the gratitude that we did get it right.  And once you get it right, if it’s truly right, nothing before that matters anymore.

You may never know the strength you gave to help us remain

#Beatingcowdens

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Semper Fi Daddy, Always.

04/18/48- 12/4/13

Loved.  Missed.  Remembered forever.

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Mortality

Mortality_AF

The awareness that one day we’re not going to walk this earth anymore.

Not exactly dinner conversation, but, for lack of a more gentle way to say it, mortality is everyone’s reality.

We face this reality at different points in our lives.  Some are frighteningly young, and others are blissfully old.  But, eventually, that awareness either creeps in or hits us like a speeding train.  (Figuratively, or course.)

In my opinion, so much of the rest of your life is defined by what you do with that realization, that understanding that there is no promise of tomorrow on this earth.

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For me, my solace, my comfort, and my focus, come from my faith.  My deeply held belief in God, and that life does not end, merely changes, as we are welcomed into Heaven.

Whatever your own belief, is, your own reality, my hope is that it brings you comfort, solace, and gives your life on this earth purpose.

As a daughter of a cancer survivor (18 years and counting!!) I watched my Mom grapple with her own mortality at an age I consider very young.  (young for her, and for me too!) She got it.  She found clarity, but it was a few tough months.  And even then as close as I was, I knew the significance of what I was watching, but I did not get it, not really.

I like to say my breast cancer was found, “by accident” or “divine intervention,” whichever you prefer.  But, the moment in the surgeon’s office, that day in March of 2012 when I became a “survivor” by default, started my own journey with mortality.  I was 10 years younger than Mom was at the time of her diagnosis.  I had just undergone what I had prepared in my mind to be a “prophylactic” mastectomy to battle astronomical cancer statistics associated with the new diagnosis of a PTEN Mutation called Cowden’s Syndrome, that Meghan and I had received less than 6 months prior.  When the word malignant was read, there it was; laying thick in the air for my husband and 8-year-old child to process with me.

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And there was reality.  Unable to ignore.  Cancer had lived within me.  Could it live again?  Would it?  When?  Why was I going to be OK when so many others were not?  Was I going to really be OK?  What if they missed it, something bigger?

I was fortunate.  Fortunate in the sense that a double mastectomy removed the encapsulated stage 1 cancer.  I needed no treatment, no medication.  But, my status had changed.  In the eyes of the doctors, I was now an even greater risk.  Every single lump and bump would be scrutinized, scanned, poked, prodded, and usually removed.  The loss of my uterus and ovaries weeks later were a testament to this new-found realization that I was a risk.  A significant risk.

Cowden’s Syndrome is one of those diagnoses that forces you to face down your own mortality at sometimes alarmingly young ages.  An internet friend just made a jubilant post today that her youngest was now 10 and cancer free, a title she did not have herself at that tender age.  The things we celebrate…

My Cowden’s Syndrome people are known to me mostly through the internet.  We live across the country and across the globe.  We navigate through different time zones and support each other through scans, scares, surgeries, reconstructions, and cancer.  While this syndrome does not manifest itself the same in each of us, there are alarming similarities that make us kindred spirits.  There is that “Sword of Damocles” hanging above our heads.  There is that constant sense of not knowing, of hyper-vigilance, of bi-annual screenings, and worry.  We stare at our own mortality each time we look in the mirror.

We have an extra bond when it connects to our children.  A universal acceptance of the unfair nature of these young ones even needing to understand a bit of mortality.  We have juggled the questions, inevitable after MRIs, CT scans, and biopsies galore.  We have gently answered questions about family, and future, that have no real answers to date.  We ache for them.  We wish to take it all away.  We have some guilt in the knowledge that in most cases this disorder, (whether we knew it or not) was passed from us.

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Mortality will bind you, and if you’re not careful it can blind you.  That is why there are support groups, for cancer patients, and others who have come close to losing their lives.

This weekend I spent some time in West Virginia with another group of men, bonded by their grapplings with their own mortality some 48 ish years ago in the Vietnam War.

I will protect their privacy here, and tell their story as generically as I can.

I connected with Alan, about 6 weeks after my father died.  Dad had earned a Purple Heart in my mind, for an incident that occurred while he was serving in the United States Marine Corps.  The award was never granted, and I wanted to pursue it on his behalf.  So, I sent some letters to Marines, whose contact information I obtained from a reunion Dad attended in DC in 2006.  I wanted to know who remembered him, and his story.

Alan contacted me first, verified my information, remembered the story, and has been in touch with me since.

My Dad, the "Irish Marine"

My Dad, the “Irish Marine”

 

 

I sent 20 letters out.  EVERY SINGLE MARINE responded to me.  EVERY ONE.  Whether they knew Dad or not, whether they could help or not, they ALL reached out to express their condolences.  Many shared some funny anecdotes.  And as hard as I’m sure it was, they all connected with me.

I had heard about the Brotherhood of the Marine Corps.  I could not have fathomed the depth of that bond.  One after another, they all left me with the same heartfelt sentiment.  “You are the daughter of our brother.  We will help you always in whatever you need.”

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Now, I knew, or at least I could infer that their lives had not been any type of peaches and cream, on the island of Vietnam, or when they returned.  My Dad battled his own demons for many years before our relationship began to form.  But the offers of these Marines were sincere, and genuine.

Alan proved that to me through regular conversations, and almost heroic efforts to get someone to listen to the story of my Dad’s injuries.  In the end, we lost the battle on a technicality.  Although “The statements provided clearly establish that your father was injured as a direct result of enemy action, the available information fails to establish that your father was treated by a medical officer…Wounds not requiring treatment by a medical officer at the time of injury do not qualify for the Purple Heart Medal.”  The letter was cold.  The case was closed.

We lost the Purple Heart but gained so much more.

We lost the Purple Heart but gained so much more.

I was sad, mad, angry and disappointed.  But I was so grateful for the Marines who wrote letters of support.  I was grieving the fact that my Dad had carried this close to him for so many years, and lived with chronic pain as a result.  I wanted this for him, because he never fought for it himself.

And as things go, it was not to be, but Alan did as he promised and remained in constant contact with me.  He heard my sobs as I glanced at Dad’s headstone for the first time. His were the comforting words that started my healing.

So, this weekend I headed to West Virginia to thank him myself.  I met a group of Vietnam Era Marines, several of whom had served with my father.  I watched them together, in awe an amazement.  I was welcomed into their group with instant acceptance.  And as I sat and watched them laughing together, I noticed the war stories were sparse, and funny when they were told.  Surely a contrast to the realities they had faced as young men years ago.  But, the bond between them was unbreakable.  There indeed was the Brotherhood of the Marines, but there was something else.

Mortality.

They faced it in the most horrendous of ways.  They lived it daily.  They buried their brothers.  They knew their return home was not a guarantee.

And once you’ve faced that kind of life altering lesson in mortality together, you are bonded for life.  As Alan said to me, “If you weren’t there, there are no words to describe it, and if you were, there are no words needed.”

I was among a group of people who had faced their own mortality almost a half century ago.  And they have a bond that can not be explained.  It is amazing.

marine loyalty

And among the most amazing to me was the woman I met.  She was not local either, but she, like I, had traveled for this celebration.  It was not her first time.  She had been around for almost 10 years.  About 10 years ago the woman, who was an infant when her father died a hero in Vietnam, met the men he served with.  She had never met her father, but here were father figures galore ready to embrace her.  And they did.

A bit ago her father’s diary surfaced from his time in Vietnam.  She shared it with me and the last entry written before he died was about the thought that so many of them must have had daily.  His diary ends with, “When will it be me?”

marine brother

Once you have looked your own mortality square in the eye, you can not walk away the same person.

But, it is up to you what you do with the rest of your life.

As for me, I choose bonding with people who “get it,” be they old friends or new.

I choose focusing on what we can do, not what we can’t.

I will not choose reckless living, but I will daily live with the knowledge that there is no guarantee of tomorrow on this earth.

Whether facing your mortality is something you endured, something you will live with daily, or something you are yet to face, how it changes you is really up to you.

As for us, in this house, we choose to remain focused on

BEATINGCOWDENS,

WHILE CELEBRATING ALONG THE WAY.

 

“The Few, The Proud…”

I have a pretty big family.  And among that family I boast countless uncles, great uncles, and aunts and cousins too.

But, I have uncles I’ve never met.  They are brothers to my father who died just about 14 months ago.

My father had 7 brothers and a sister who I’ve grown up alongside.  I have cousins galore, and I love them all.

But there is another part of my Dad’s life that only began to become real to me in the weeks preceding his death.  And that is where I began to learn about these other uncles.

And even today, as I sit, on this snowy day, in my office, in Dad’s chair, and with his old champion sweatshirt for warmth, I have plenty of time to reflect.

We spent today home.  Meghan and I were beat up by a schedule that is beyond our capability to maintain for extended periods of time.  We crashed. Hard.  Sometimes it’s easy to ignore this chronic illness we have.  Sometimes it’s easy to forget about this genetic mutation lying in wait to wreak havoc on our lives.  Sometimes we do such a good job pressing on – getting it all done – that we forget we need to pause.

Cowden’s Syndrome doesn’t cause the fatigue, per se.  At least we don’t think so.  But, somewhere in between the messed up blood counts, and the appointments, and MRIs and scans and trips to Manhattan, the fatigue finds its way in.  Add in surgery on the calendar for me in February.  Couple that with the raw determination of an 11-year-old who is intent on conquering the world – and you have focused school work, swim practice, meets, theater practice, and an epic amount of community outreach work as the date closes in on our “JEANS FOR RARE GENES” Fundraiser at the Hilton next month, and suddenly this exhaustion seems easily explained.

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

Suffice it to say, a January snow on a Saturday morning was truly a heaven-sent gift for us.

And so after the laundry is back under control, and the house is returned to reasonable order, I get time to sit with my blog – a place I have missed in the chaos of the last two weeks.

And while I have so many family and friends that I love so much, the reality is that when I had things on my mind – intense medical things.  I would always and without fail use Dad as a sounding board.  He would listen for hours with no judgement passed.  He would offer advice when he could, and respect when he couldn’t.

For large parts of my youth Dad was absent, almost completely.  I didn’t understand, but it was what it was.  Sometime after I got engaged in 1999 our relationship began a lot of repair work.  We talked more and more as the years past, but there was always a detachment.  There was a shield.  Even with us.

He settled on Staten Island finally, about 5 years before he passed away.  He lived with his sister, my aunt, and they were good company for each other.  He reached out.  He made an effort.  Slowly he started to let me in.

I was a psychology and education major in college.  I remember the lessons on PTSD, or Post Traumatic Stress Disorder.  Immediately so many things made sense, and I saw my father in those lessons.  But the real moment came when he said it himself during one of our long conversations.  “I have something called PTSD…” and there was an opening to a world I had never been allowed into before.

There was a young man – still in his late teens.  A young man who became a Marine.  One who enlisted with a few friends during a war that I knew precious little about until I began my own research.

Dad

My grandfathers, all three of them had fought in World War II and tales of their service were common.  Never in a bragging way, but matter of fact lessons and experiences and stories, told and shared my whole life.

I studied World War II in school.  I learned, probably not enough, but enough to carry on an intelligent conversation.  But, I as a teacher of young children, had precious little knowledge of the horrors that were the Vietnam War.

My Dad who left for that war never came back.  Sure, he survived treacherous battles in the jungle, but he never came back as the boy who grew up on the local streets with his friends and siblings.  He returned a changed man.

veterans day 3

My Dad gave his entire life for his country, even though his service record bills his active service as about 3 years (of that 13 months were in the jungles of Vietnam,)  He came back traumatized, confused, and unsettled.  One of the talks we had after the acknowledgement of the PTSD included, “I spent the first 40 years after I came back thinking everyone else was crazy, and the last 5 thinking maybe it was me.”

Years of wandering allowed him to make “friends” with lots of people in lots of places.  But in reality Dad was a “man’s man.” It was easy for people to trust him and share with him.  Many people who viewed him as friends knew very little about my Dad the man.

Dad with a buddy in Central Park

Dad with a buddy in Central Park

As he got sick Dad authorized the release of his medical and service record to me.  He knew I would pore over every detail and search and question, and hopefully find answers no one else could.  I searched and I read and I researched and I asked, but in the end the course of events was set to be what it was.  During that process though I read, first hand accounts from my father about things I had never known.

I also got to spend more time in his apartment.  And there were three pictures there.  And Dad would talk briefly about those pictures.  And I would wonder about the other men behind those eyes.  And how their lives had turned out.

Thomson, Merkel & Zeppie close up

After we buried Dad in December of 2013 I continued my quest through our local Congressman to get his service records reviewed.  Still in a deep quest for closure I uncovered some photo CDs in Dad’s things.  Most were of photos taken by him.  One was marked Vietnam.  On it were photos not taken by Dad, of Marines who served with my him.  There were pictures of men, pictures of war, and documents that I had never seen.

Not long after that,  a conversation with Holly, a woman who we all love, who shared a long relationship with Dad, produced a contact list for Dad’s Marines.  The names matched the names on the photos and I set about writing letters to each of them.

I sent out letters to each of them, looking for specific information.  I knew my hope was a longshot.  I was looking for recall of events that had taken place over 45 years prior.  I sent out 18 letters.  I expected I’d be lucky if I heard from one of them.  Why would they answer me?

And that is where I learned of the uncles I never met.

Aside from the 2 Marines who had predeceased my Dad I had responses from all of them.  Every single one of them reached out to me, to offer condolences, to tell a story, and to offer support.  I laughed and cried and healed more during that month than I could have imagined possible.  These men, together for a relatively short window of their lives, were deeply bonded as brothers forever.  These were my “other” uncles.

semper fi

And I connected with the men from the photos, “Merck and Zepe” as Dad called them.  To listen to their tales of stories I had never heard, was a gift I could not have imagined.

But there is one.  One “Uncle” who has been there for me this past year in ways far beyond what I could have ever imagined.  “Uncle Alan” had listened to my tears, taught me, comforted me, and supported my endeavors.  His compassion knows no bounds.  He has prayed for my family, asked about my daughter, given me peace on Father’s Day, and has done more for me than I  imagine he will ever know.

he who shed blood with me

Last week I was at the height of exhausted and in my mail was a package from “Uncle Alan.”  In it was the book “90 Minutes in Heaven” as well as a bumper sticker, a T-shirt, and a “US Marine AM-GRUNTS” hat.  I cried.  Tears of gratitude.  For God’s introduction to family I never knew I had.  I cried tears of healing, as I come each day to understand more about my father through these men who call him “brother.”

Dad and I spoke sometimes, towards the end,  about the “whys.”  He wondered why he got to come back and live his life, when his dear friend Tommy was KIA.  He wondered about mine and Meghan’s Cowden’s Syndrome.  He wondered if there could be a connection to his ruthless exposure to Agent Orange.  If somehow that genetic mutation could have arrived in me through him.  He wondered about the possible connection to the cancer that took his life.  We wondered together lots of things we will never know the answer to.

But there  are things I don’t wonder.

Dad’s life had purpose.  It had meaning.  It left impact on everyone he ever loved.  Out of his suffering came great strength, and a deep faith in a good and perfect God.  I don’t wonder for a minute where Dad is now.  I am sure he is flying free in Heaven.

I don’t wonder “how” we got Cowden’s Syndrome.  Cause we have it.  I don’t even wonder “why” we have it.  Because we do.

And who we are develops through our experiences in life.  And while there are some I would have preferred for us not to endure, I don’t wish to change them.  We are learning to be the best people we can be.

And along the way, there are people looking out for us.  “Uncles” we never knew.

Alan signs his letters “S/F” for the Marine Corps motto “Semper Fi” – “Always Faithful”

A permanent addition to my ankle...

A permanent addition to my ankle…

I have not known truer words.

I plan to get to visit “Uncle Alan” in June.  We have lots more to talk about.

Blessing abound if we keep our eyes open.

something to be grateful for

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

Freedom IS NOT Free!

When I taught Social Studies I most enjoyed the curriculum that allowed me to teach about the United States.  It made me sad on Friday to overhear conversations about this upcoming weekend, and never once feel there was an understanding of Veteran’s Day.  When I was a fifth grade teacher the children wrote about their “Rights and Responsibilities” as American citizens.  That was a long time ago.

I was raised to answer the question, “Where are you from?”  with, “The United States.”  Growing up, that aggravated more than one person who was looking to learn where my ancestors had traveled from to arrive in America.

Precise language.  They learned to ask the question they wanted to know the answer to, or not to ask.

veterans day 4

I am the proud daughter of a Vietnam Veteran, and the grateful granddaughter to 3 WWII veterans.  Although 2 of my grandfathers are no longer here with us in body – their spirits remain strong in my soul.

All of the men I mentioned served in war.  All of them returned home to us.  All of them shaped my life and helped me become the woman I am today.

veterans day pop thompson

Pop T. came home after serving in Iwo Jima, to raise a family of 9 – 8 boys and a girl.  Visiting their house as a child was certainly wildly fun.  My father is the oldest child, and my sister and I were the first grandchildren.  We enjoyed time with Pop who had left behind a promising athletic future before his service in the war.  He had time to impart much of his wisdom before he passed in 1993.  My only sadness is for my many cousins that never got to know him the way I did.  There is no denying his legacy.

veterans day ggpa

GGPa came into our lives later when Mom married Ken.  I was 15 years old, and my sister was 18.  Ken wrapped his arms and his heart around both of us, and truly made my world a better place.  At the time his parents, who came to be known to us as GGPa and GGMa had no grandchildren of their own.  I was so flattered that they accepted us and enveloped us with such love.  GGPa is gone over a year now, but in our years together I got to know the definition of “gentleman” through him.  He was a positive influence, a pleasure to be around and a treat to talk to.  He is missed and loved and appreciated.

veterans day pop and gigi

Pop G. is one of the most amazing men I have ever had the pleasure of knowing.  The fact that I will turn 40 next week, and I can recount my day by saying “I spent some time with my grandparents,” in and of itself is amazing.  Not to mention  that they are 93 and 94 – living in the second floor of their own home.  I grew up during my most formative years, in the first floor of that home.  I had the daily love and support of my grandparents.  When I speak of Pop, and the influence he has had, even I am at a loss for words.  His faith dictates how he lives.  He loves God, his family, and all others before himself.  I am so blessed to listen to his stories, and to revel in years of beautiful memories, while still making more!

veterans day dad

And then there is my father.  The free spirit whose love of adventure has guided him down many paths in his life.  We have conversations that always leave me deep in thought.  He has experiences that are broad, from far and wide.  Most recently in the last few years that road led him right back closer to home, and I have been so grateful to have him just around the corner.  My girl has gotten to know him, and always remarks about his smile.  He tells her he smiles because of her.   His genuine heart, and the depth of his love have made him the person he is today – one I am truly glad to have in my life.

There are children who seek desperately one male influence in their lives.  The amount of time I have been afforded with each of these men is a gift.  I will not squander the knowledge, and life lessons I desperately try to soak up like a sponge.

veterans day 3

Each of them saw things I do not dare imagine.  Each of them lived experiences I will never understand.  Each of them sacrificed, time, love, health, and so much more.

I can only imagine that at some point they have all wondered why they got to come home when some of their comrades did not.  And, while I can not ever know the plan – I can, on my knees thank God for returning each of them safely so they could live their lives.

veterans day 1

Not everyone is as fortunate.

I have received a gift too great to squander, too valuable to toss aside, and too personal not to wear it close to my heart each day.  For it is because of them that I am.  It is because of them that I have learned poise, strength, and grace under pressure.  It is because of them that I know to love so deeply.  It is because of them I have been blessed with my daughter, unique, RARE, and determined to change the world.

Stand for the Pledge of Allegiance and the “Star Spangled Banner.”  Think about the words.  Feel them in your heart.  Educate yourself.  Learn about the sacrifices made to make this country.

veterans day 5

You may want to complain that life isn’t perfect.  You may want to complain about the country.  And while I can agree that many things are not as they should be, remember what my grandfather said to me, “The Constitution is an extremely well-written document, the flaws are in its execution.”

And regardless of your political stance on any war ever – support the soldiers.  Those men and women are there out of a selfless love of country.  They are making sacrifices far beyond what we see and what we know.

veterans day 2

Precise language.

I am PROUD to be an AMERICAN, and even prouder to be related to so many who loved this country enough to fight to defend the principles it was founded upon.

Veteran’s Day. November 11.  FREEDOM ISN’T FREE.

veterans day 6