Pathology…

About an hour ago I got off the phone with Meghan’s gynecologist.  It seems we dodged another bullet.

Mostly.

Once again we got to spend about 45 seconds in a deep breath as we were told there was no evidence of malignancy in the uterine biopsy from last Friday.

BUT…

There is always a “BUT…”  I’ve come to expect it now.  After she spoke, she paused.

I asked her why she sounded happy and hesitant at the same time.

“Well I just got off the phone with the pathologist…”  and her voice trailed off.

So much was what she expected when she spoke to us Friday.  But, it was still bothering her that there are polyps.  And more than one.

“It just shouldn’t be…”

Sigh.

We’ve heard this so many times before.  “It just shouldn’t be…”  But, in fact it is.

So the polyps were benign.  The tissue sampling was benign.  This is a good thing.  A very good thing.

Digitally generated My brain has too many tabs open

But, this whole situation.  The whole scenario that causes all sorts of conversations a 12 or 13, or even a 19 or 20 year old for that matter, should NEVER have to have, is just not ok.

There are thoughts, decisions, trade-offs, conversations, risks and benefits that make deciding on a high school seem trivial.  Strange that THAT will be the toughest thing most girls her age have to do this year.

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And as I look at her, it kills me inside the things she has to go through, and the thoughts she needs to think.  All I can do is thank GOD, that He trusted me with this beautiful, dynamic, witty, young lady.  And I promise to take good care of her until the rest of the world figures her out.

 (and really, for FOREVER. as we remain #BEATINGCOWDENS together!)

Counting… Our 400th Post!

“Count your many blessings, name them one by one…”  Grandma used to sing years ago when we would complain about nonsense.  She was a little tough sometimes my Grandma, and maybe that’s where I got it from.  But, many times she was right, whether we listened or not.  (Maybe that’s where I got that from too? ;-))

Count your Blessings 1-03

I like numbers.  They are logical.  They are what they are.  In a world that often makes no sense at all, I find order in numbers.

Except sometimes I’m faced with the question of what to do when numbers become overwhelming in and of themselves.

This marks the 400th post on this blog.  While it’s by no means a masterpiece, when I sometimes poke through old posts I remember so much of where we’ve been.  It’s a definite roadmap of our journey, and Meghan and I take great pleasure when people from around the world reach out to us and cite the blog as a source of comfort and strength.

Cowden’s Syndrome is rare enough that it can be a lonely diagnosis.  Being able to reach people the world over has been a victory for us, and them.

With over 170,000 hits on various posts I know we are getting the word out.  Slowly.

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I might have wanted to celebrate this post.  I might have wanted to make it really special.  But, I’m counting something else today.

Today was the 17th time I’ve gotten off the phone with the nurse, giving me pre-operative directions for my daughter.  Today, I listened as I always do, reciting the directions in my mind before she spoke.  Really my only interest was the time.  The rest is routine.  I want to stop counting.  I want to just go with it.  I can’t give you an exact count on mine anymore – because once you’re a mom, well, you just focus more on what’s important.  And you become less important.  And that is a gift, denied to many, cherished and appreciated.

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Somehow though,  if I stop counting for her, it makes her struggle feel less valid.  The numbers give her strength.  A badge of courage.  Something concrete in this world of abstract.

My post last night was about “Patience”

The Waiting Place…

And as I poked around the blog this morning I was taken back years, through so many similar posts.

Blessings… and patience

“The Waiting Place…”

Hurry up… and waiting rooms…

Losing Count…

Their similarities are uncanny.  I guess the story doesn’t change much.  Hurry up, wait, surgery, wait, recovery, wait, follow up, wait…

So I’ll leave this 400th post as unremarkable.  Nothing has changed.  Nothing will change.  And that’s the precise reason we keep counting, and keep telling our story.

Tomorrow, surgery number 17.  9:15 arrival.  As usual, prayers always appreciated.

#beatingcowdens 400th post!

400

The Waiting Place…

A quick Google search brings the definition below when the word “patience” is entered.
pa·tience
ˈpāSHəns/
noun
 
1. the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
I’ve been thinking a lot about patience these last few weeks.  It’s something we work on from a very young age, yet I’m not quite sure it can ever be attained in its purest form.  At least not by me.  Not if I’m honest.
patience 5
And I tend to be honest right here.  Which some might think is an odd place to make that choice, but that’s for another conversation.
We work on patience when we are young.  Waiting for play time.  Waiting for school to end.  Waiting for a party.  Waiting to get there.  Waiting for the game to finish. (Waiting at ‘the waiting place’ like Dr. Seuss in “Oh, the Places You’ll Go”)
We learn that patience will help us get things faster.  If we are patient our parents are more likely to bend.  If we do what we’re told and wait, things are more likely to go our way.  That ice cream cone has a better chance of landing in our hand if we’ve exercised patience than if we’ve badgered.
When we get a little older there are less overt rewards for patience, yet it’s still a necessary virtue to master.  Those without patience are deemed immature.  If we are overly demanding it endears us to no one.
patience 2
I know this.  I know all of this.  And generally I am a pretty patient person.  But, I must tell you I have thought long and hard about the amount of patience required to navigate Cowden’s Syndrome and its ramifications, and it seems to be an inordinate amount.
I get it.  I’ll say it a thousand times to anyone who will listen.  Of all the “rare disease” cards to draw, this is by far among the better ones.  I know of the suffering of so many who are diagnosed with torturous terminal diseases.  I know of so many who would trade places with us in an instant.
If the PTEN mutation causing Cowden Syndrome is found early, a lifetime of vigilance can often ensure longevity.
It’s just that with that vigilance, you need to much darn patience.  So with my gratitude, I sometimes battle frustration.  Which is ok.  Because I am human.
patience1-1
In the last 21 days I’ve been to Manhattan 4 times for doctor’s appointments, and another 2 to Long Island.  The average roundtrip for these appointments is about 5 hours.  5 hours to travel in insane traffic regardless of the hour.  To Manhattan the distance is only 13 miles and I can not tell you how many times 2 hours hasn’t been enough time to be on time.
But, I should never worry, because they are rarely, if ever on time.  And while I understand the myriad of reasons doctors run late, still the patience sometimes runs thin.  Especially when we are anticipating another traffic filled journey home.
The patience wanes when I call offices and 2 days lapse without returned calls.  I struggle when I have to spend hours explaining what test I need insurance authorization for, only to have the person speaking to me become hysterical with laughter, presumably because they are being told a joke.  I’m not against laughter.  I actually like it.  But, when I have to now cancel the test ordered by the doctor I never wanted to see in the first place, sometimes I just can’t find it funny.
patience 4
When I call for an appointment and I’m given a 3 month wait time.  And an appointment smack in the middle of the work day.  I lose patience.  I don’t expect special treatment.  And its a good thing I don’t.  But its sometimes hard to stay patient when you’re juggling over a dozen specialists (each) and a full-time job, and academic honors.
So in the summer I try to be even more patient.  But by default I have to get a lot of things done in the summer.  We are actively trying to shove in some fun, in between a boatload of appointments.  I try to squeeze in time in pockets of my day to regroup and relax.  I try not to cringe when my Facebook news feed is full of play dates and day trips.  Why shouldn’t it be?  I don’t WANT anyone else to have to sort through this mess.
Friday is Meghan’s second uterine biopsy.  PTEN mutations tend to cause most of their cancers, although not exclusively, in the thyroid, breast and uterus.  The fact that she hasn’t hit her 13th birthday yet, and this will be her 17th round of operating room, general anesthesia procedures is taxing.  But, we will be patient.  We will be patient tomorrow when we wait for the time of Friday’s procedure.  And we will be patient on Friday as there are often delays.  We know.

time concept, selective focus point, special toned photo f/x

We will be patient over the weekend as she adjusts to the discomfort and pain from the procedure.
We will be patient while we wait.  And wait.  For the critical pathology report.
We will be patient while she heals enough to return to the pool.  Her happy place.
Patiently we will continue to navigate the road of vigilance, peppered with mines that need to be avoided at all costs.
We will pretend, each time we meet a new doctor, that they are the most important.  We will not even try to explain the full complexity of the scheduling of life.  They have their own problems.  They don’t need to hear about ours.
When we each face our own lives we know the challenges presented to us.  I don’t want any of yours.  At least I understand the task at hand here.
I have gratitude that I am given the opportunity to allow my vigilance to matter.  I am patient.  Mostly.
pa·tience
ˈpāSHəns/
noun
1. the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
Usually I take a deep breath.  A bunch of times.  I’ve learned patience gets you farther.
So if some days are harder than others, I ask you to have patience.

#beatingcowdens can be exhausting.

persistence

“We’re All in this Together…”

High School Musical – We’re All In This Together

“…Everyone is special in their own way
We make each other strong
We’re not the same
We’re different in a good way
Together’s where we belong
We’re all in this together
Once we know
That we are
We’re all-stars
And we see that
We’re all in this together
And it shows
When we stand
Hand in hand
Make our dreams come true…”
The news is filled with horror stories.  Local and abroad, young and old.  Lives lost through senseless acts.  Cries for unity, and division sometimes drown each other out.  From the grand scale, to stories closer to home, we seem collectively to be lacking the notion that, for lack of a better phrase, “We’re all in this together…”
As Rare Disease patients, one of the statistics that blew Meghan and I away early in the game, was the one that said 1 in 10 Americans suffers from a Rare Disease.  If all of these people got together, they would make the world’s THIRD most populated country.
  • 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population.
  • If all of the people with rare diseases lived in one country,  it would be the world’s 3rd most populous country.
  • Source https://globalgenes.org/rare-diseases-facts-statistics/

We have wondered through the years what good could come of uniting forces for the benefit of all Rare Disease Patients.  And slowly we are starting to see charities connect for the betterment of the big picture.  The PTEN foundation has teamed with a patient with Duchenne Muscular Dystrophy, to raise funds to benefit both causes, and for those that remain undiagnosed.

Please consider supporting this cause.  There is important work being done for all.

(FROM THE PTEN FOUNDATION FACEBOOK PAGE) Exciting News!!! We have a team of 12 sponsored cyclists that will support Ride4Gabe getting the word out about ‪#‎Duchenne‬ Muscular Dystrophy,‪#‎PTEN‬, and all Rare Genetic Illnesses with unmet medical needs. This is huge. You can help, please share this and our team go fund me link often. 1/2 of all proceeds will go to our PTEN Foundation. 

HTTPS://www.gofundme.com/wesupportride4gabe

THEY GET IT!  They understand, “We’re all in this together…”

I was never a huge fan on Disney’s High School Musical.  I’m not really sure I ever sat down to watch, and I likely judged without thinking.  But I’ll be the first to tell you first impressions can be flawed.  And I’ll also tell you that I ‘get it’ on a much more grand scale after last night.

For us it started with a friendship that bloomed between Meghan and one of the most compassionate young ladies I have ever met.  They’ve known each other forever, but only in recent times have they come to know each other as “friend.”  They spent time on stage together through middle school productions, and it was through this young lady we learned of a Summer Theater opportunity offered.

Meghan's "Sisters" not by birth, but through love, heart and choice.

Meghan’s “Sisters” not by birth, but through love, heart and choice.

Welcome to the

Staten Island Children’s Theatre Association

We are a self-sustaining program sponsored by the Staten Island Mental Health Society whose mission is to promote positive mental health through the arts.  We are currently celebrating our 52nd Season of bringing live theater to children and families. 

Looking for a summer change of pace, and not knowing at all what to expect, I dropped Meghan off to the Snug Harbor dance theater where these forty-five or so 9-18 year olds would spend the next 8 days generating a full “junior” production.  I walked into the back of the room for the parent meeting at the end of the first day, and I watched the children, and young adults, attentive on the floor.  This was July.  There were a lot of them.  Their respect had already been earned by the staff.  This was a “no-nonsense” set up.  We received out parent information and as we left to head home, my girl said very little about the day.  She told me she liked it though, and this was a big win.

Some of the children in the program were new, like she was.  Others had been in the program for years.  And somehow it seemed to not matter.  Ages, genders, styles, personal interests, there seemed to be very few alienating factors.  Everything seemed to be joining them together.

Each day pick up was a little smoother.  Names were a little more familiar.  Identities seemed a bit more well-established.  By the time we came home last Friday, it was hard to imagine they had only spent a bit more than 24 hours together.

HSM 2016g - Copy

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10-4 for eight days they sang, they learned, they laughed and they grew.  They focused and learned that they needed to keep …

 “Just keep ya head in the game
Just keep ya head in the game

And don’t be afraid
To shoot the outside “J”
Just keep ya head in the game…”

They became a team.  They became a group of high energy youth, who each possess their own strengths.  Instead of trying to outshine each other, they learned they would shine best together.

Last night before we got into the theater I looked around.  I saw photos from the dress rehearsal, parents and children I knew from other walks of life, and family and friends there to support my girl.  I am an over-thinker.  I always will be.  It was hard not to think one week from then she’d be, God-willing, on my couch recovering from another biopsy.  But, that was not about tonight.  Tonight was about #beatingcowdens by being part of a group, by being one of “them,” and by being on that stage in a very present way.  So I cleared my head, and I watched.

Sneaking in a Proud Mommy Moment:-)

I watched a play about finding your own identity, supporting each other, not being linked into your “label,” following your passions, learning trust, and forgiveness and so much more.

I never was a fan of “High School Musical,” until last night.  Last night I realized that there was such a timely, deeper meaning.

Truly, “We’re all in this together…”  and in the words of Ben Franklin, “We must all hang together, or most assuredly we will all hang separately…” It’s time.

HSMo

It’s time we stop seeing labels, and who we think people are.  It’s time we start learning who they really are.  It’s time to start celebrating the good.  Because there is much good to be celebrated.

On an island knee-deep in a very real drug crisis, hitting every single walk of life, I am filled with gratitude for SICTA, for giving children something to focus on, and for instilling a positive message of self-worth and deeper meaning.  I can not name all the adults who touched my girl’s life this week for fear of leaving someone out, but YOU, YOU are leading by example.  I  am full of gratitude.

Life #beatingcowdens is riddled with twists and turns.  You gave us a brief respite.

And, as the lovely young lady took Meghan from the steps of the theater and invited her to the diner “with the cast,” so many things came together.

“We’re All in This Together,”  indeed.  THANK YOU #SICTA

“1,2,3…BRAVA!”

 

Justifying Our Existence

There was a post that showed up in my news feed this week from http://www.themighty.com.  Read The Secrets of People with Chronic Illness here

I can’t seem to shake some of the thoughts from my head.

chronic illness

As I write, school ended for the summer 9 days ago.  In those 9 days we have seen 4 doctors between us.  There are 9 more SCHEDULED in the month of July, including a biopsy for Meghan on the 22nd.

And, while I did take some time over the weekend to reconnect with some dear friends, and I have accomplished a few mundane tasks like routine car maintenance, the vast majority of every moment of those 9 days has been spent justifying my existence.

Fortunately, I have enrolled Meghan in a theater camp where she is from 10-4, spending some time with kids her age.  Of course, the wear and tear on her body, even after only 3 days is evident.  She struggles with pain so badly.  On her feet, determined to fit in.  Determined for me not to say too much.  Sometimes I have to let her go.  I have to let her try.  I have to let her decide.  But, it hurts.  It hurts her, and it destroys me to watch her battle with her body.  I watch her put that game face on in the AM, and not take it off until after swim practice follows camp.  No one will ever tell me she is anything but driven.  But, no one would ever know to watch her…

chronic illness2

Usually by this point in the summer my work bag is unpacked, washed and tucked away.  Often my lesson plans for September are mostly framed out.  I am yet to take the list I frantically formed as I packed my room the last day of school out of the bag.

Instead, the yellow legal pad sits near my computer.  I write, and cross out, and rewrite, as I call, obtain records, set appointments, and clarify tests required by various doctors.  I rearrange schedules to allow for coverage for Meghan as I trek to my own appointments at the most inconvenient times.

On the 18th I will meet a new plastic surgeon, as the old one no longer accepts our insurance.  I never imagined needing a new plastic surgeon only 4and 1/2 years post op from the mastectomy, but it seems I do.  I’ll wait until I meet him to elaborate on that…  Sometimes, although not often, I do feel like this…

chronic illness3

I can often count on 4 hours minimum round trip for the 10 mile trek.  Never mind the cost.  We just don’t even add it up.  Instead, we thank God for our jobs and the insurance we do have.

I received a phone call yesterday from a lab that was running insurance information to obtain testing for Meghan requested by one of her doctors.  Except it’s not covered at all.  $16,000 they said.  I, who denies my child nothing politely said, “we’ll find another way”.  And we will.  Because that is just insane.

I’ve sent 3 emails to the office manager of the office doing her procedure on the 22nd.  I simply want to know what date to leave free for the follow-up.  I know there will be one, and I want to plan a few summer adventures in the time that my fish will have to be out of water.  I also asked for the pathology from her December procedure.  For about the 8th time.  Just keep adding checks and dates to the list.

When things get really bad, like with the bills I’m fighting in collections, they get a folder of their own.  The SUPER troubling places, like the mail-order pharmacy, have a notebook.

We do our best to stay upbeat.  We count our blessings regularly.  We know it could be worse.  We know the anguish others suffer far surpasses our daily struggles.  But, no matter how much we focus on a positive attitude, and believe me we do, it does not decrease the pain, both physical and emotional.  The struggle is real.  Whether we like to admit it or not.

chronic illness4

I reached out to our genetecist this week.  Darling man said he would always help, and didn’t want us to waste a trip on him.  I told him I was having trouble with my voice.  I’ve been getting very hoarse for 8 weeks or so.  No infection.  Three allergy meds on board.  But, I do have Cowden’s Syndrome, that tumor growing thing I sometimes forget belongs to me too.  And I have a history in the neck.  A 3.5 pound lipoma in 1988, and multinodular goiter on the thyroid in 1993.  Both removed.  Both benign. But…

He referred me to a head and neck surgeon.  I finally mustered up the courage to block out at least one more day of summer, and call for an appointment.  I was met with the inquisition on the phone.  I never got past the receptionist.

“This doctor is a head and neck SURGEON.”

“Yes, I know he’s a surgeon, I was referred for consulation.”

“Well, he doesn’t just SEE people, you need a diagnosis and a referring doctor.”

“I have both.  C-O-W-D-E-N Syndrome.  A mutation on the PTEN gene that causes benign and malignant tumor growth.  I was referred by my genetecist, also a doctor at your hospital.”

“Well, what tests do you have?  He will want a report, a CD, something…”

Sigh.  I just don’t have the fight in me today. “Ok, you win.   I’ll find someone else.”

“Come back to him when you have a diagnosis.”

 

Whatever.  Just whatever.  Sometimes I get a little tired.

chronic illness5

Thats when I shake it off with a quick walk.

I emailed the genetecist back.  I’ll wait.  Again.

I have this pool in my backyard.  And plenty of people I’d like to reconnect with.  And some lessons I’d like off my plate.  And a book I’d like to read.

I’ll get there.  In the mean time, I’ll be at my computer.  Emailing.  Arguing.  Advocating. Communicating.  Researching.  Justifying my existence, and

 

#Beatingcowdens with whatever it takes.

“Stay Alert! Delays are Possible!”

stay_alert

I saw the sign Friday, somewhere along the Pennsylvania Turnpike.  I laughed, in spite of myself.

We were headed on a 400 mile road trip to West Virginia, a trip I was making for the second time, and Meghan for the first.  Last weekend in June to celebrate Alan’s birthday.

As we traveled through the hills of PA, I became somewhat accustomed to shrieks of joy, as the landscape at times was utterly breathtaking.  And, there were cows.  Overwhelming for a young city girl, not given too many opportunities to travel out of a small radius.  The camera barely stopped.


I was thinking about the list of things creeping into the month of July already.  There are 8 appointments and a surgery for Meg already scheduled.  I am annoyed, not so much at the surgery, as I am about the time constantly taken to try to stay on top of this cancer -causing, tumor-provoking, life altering nightmare called Cowden’s Syndrome.

Meghan’s next major procedure is Friday July 22nd.  The pathology on that procedure will determine what, if any, delays are possible in the future.

“Stay Alert! Delays are Possible!”

There wasn’t much traffic on the way to West Virginia.  The trip itself took us a little over 7 hours.  We arrived before 9, and blended right into easy conversation on the porch.  Alan, his family, and some friends, welcomed us warmly.  They greeted Meghan as if they had known her for years, and treated me as if I stopped by every few days.  All of this oddly comforting.  In reality I met them for the very first time last June, and Meghan was meeting them that night.

 

 

img_7543

 

img_7548Yet, we had known each other for longer in ways that matter.  These men, most of them, were Marines that had served with my Dad some 45 years ago in the jungles of Vietnam.  These men knew my father during a brief time in his life that undoubtedly changed and shaped the man I later knew.

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Alan was the first to reach back to me when I sent a letter to Dad’s 1st Amtrac Batallion, 3rd Marine Division brothers.  I was, at the time researching an incident that we felt may have warranted a Purple Heart for Dad.  I sent over 20 letters that week in January 2014.  I heard reply from every living Marine I contacted.  EVERY SINGLE ONE.  They spoke to me, and comforted me.  Those who remembered the incident wrote letters of support.  All told me that as the daughter of a Marine I was one of theirs.  I was to call on them as needed.  It seemed surreal.

But Alan stayed in touch.  Close touch.  We spoke, and still speak via text several times a week, and often by phone at least once a week.  As he worked every angle he could for a Purple Heart that not earned in the technicalities of the USMC, we grew in friendship.  And over time I came to realize that the relationship we had built filled a larger hole than any posthumous medal could have.I do not mean ever to saint my father.  Nor do I mean to make excuses for him.  There were some terribly rocky times in my childhood that can not be repaired.  But, we had time to make peace years before he died, and I started to understand a few things.  A few really important things.

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Now, we were in West Virginia, keeping time with 5 Marines who served with Dad.  They were wounded; physically, emotionally, or both.  They shared stories.  They shared PTSD.  They shared tales of failed relationships, and difficult feelings of guilt.  They verbalized what Dad couldn’t.


And Meghan, oh did they take her in!  One by one, as if helping my father make up for lost time, they spoke and laughed and listened.  They got to know her.  They cared.

Saturday morning Alan’s grandson took time out of his day to teach Meghan to shoot a compound bow.  It was something she had always wanted to do, and circumstances had not allowed.  So, here we were in the hills of West Virginia.  And there was her lesson with the bow.  Arrows on target.  Success.

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A few hours later we were on a farm with the Marines.  We rode a “side by side” through the farm and got to take in views we would not have otherwise seen.  Then, Meghan was invited to shoot a rifle.  With a little hesitation she was guided.  And I watched as her tense face turned into a smile.  There were 4 paper targets 100 yards away.  She fired several times and hit paper repeatedly.  First try, “Oddly relaxing,” and successful.

Maybe because we live in the zone of “Stay alert!  Delays Possible!”  that seizing the opportunities as they present themselves is even easier and more logical.  I didn’t shoot a bow or a rifle, so I can’t be sure.  But, she is clearly not shy about learning new things.

The birthday party ballooned to over 50 people in the driveway and garage of this beautiful home.  There was mingling and talking, mostly with people I barely knew.  Meghan found the time to chat with each of the Marines.  She asked questions.  She got answers.  And, in some cases more questions.  But they each took time to speak, honest, and frank, about their experiences, and about her Grandpa.

I stole away some time to lay on the front lawn and appreciate the flags while enjoying the relative quiet of a “busy” street.


Meghan was met with generosity of tangible items, and generosity of kind spirits.  She now has a money clip and some Vietnamese money from the era.  She also has some special paintings, and a walking stick.  The latter two were gifts from “Uncle Moe,” who was a bit older than the rest.  After 3 tours in Vietnam, and 22 years as a US Marine, he had some tales to tell.


When she  asked what she should know about the Marine Corps., she was told “Brotherhood”.  The simplicity and depth of that answer was playing out over the weekend, and it made sense in concept and in real-time.  These “brothers” trained to never leave a man behind.  And in our case, that included his children and grandchildren.
The weekend went too fast, and before it was time to leave we even sneaked in a visit with some pigs down the road.  City girls have to make the most of things when they are around!

 

Preparing to leave on Sunday was harder than logic says it should have been.  But, we had spent the last 2 days enveloped in a Marine Corps “sandwich” of unconditional love and support.  We know now with these Marines there are no “goodbyes,” only “see you soon!”

As we drove I don’t think either of us spoke for at least 75 miles.  The enormity of it all was tough to digest.

She held the walking stick in one hand and the money clip in the other, wanting to make the weekend longer than it had been.

I cry often.  Meghan, not so much.  Yet, both of us were choking a bit.  It was the kind of experience that changes you.  The simple beauty of just fitting in.  Just because.

“Stay Alert! Delays Possible!”

Not just traffic delays, but real life ones too.  As we began the 400 mile trek home we contemplated Monday’s appointment in Manhattan – a quick toss back into reality.


I pondered whether it was right to show Meghan this world, and then take it from her so fast.  But, I knew it was.  It was a part of her.  A part of her history.  A part of her life.  It was something that I do not fully understand, and yet I needed to expose her too as well.

Dad was not a saint.  But, he loved us. Deeply.  There was never a doubt about that.   Even as he began to heal, he often struggled to find ways to express it.  It was a battle in progress, and he was winning.  But, he was called home before he could quite finish.

So, he left it to his “brothers,” his Marines.

And they did a good job.

This weekend was for the soul.

There’s plenty of time for

#beatingcowdens 

this week.

 

The Days are Long, but the Years are Short…

 

A wise person once told me this.  I think Meghan was young, and in that two-year span where most of her time was spent screaming.  I admit to wanting those days to end when I was in the middle of them.  And, while I miss some of the cuddling, truth be told, I’m not sorry I wished THOSE days away.

It’s the rest of them.

From the time she stopped screaming, she’s been pretty cool to be around.  And now I look at her eye to eye.  While she’ll always be my baby, the years seem to be flying by.

This week I had to explain to her middle school that she would NOT be taking 9th grade math in 8th grade.  For some people this makes a lot of sense.  For us, not so much.  I’m all about the foundation of math, and building without the 8th floor seems silly to me.  Plus, really, there is nothing wrong with taking 8th grade math in 8th grade.  What’s all the rush?

When Meghan was born she had seven great-grandparents.  Two of them she never met in Puerto Rico, but still seven great-grandparents.  Insane.

She also had 5 grandparents.  That’s a lot of love.

But, I also remember clearly a colleague at work commenting, “That’s a lot of loss she’ll have to endure.”

Three of the most important men in my life.

Three of the most important men in my life.

I was indignant.  Annoyed when she said it, because even though my conscious mind knew it to be true, I was not one to sit around and think about it.

We had Cowden’s Syndrome to digest.  We had major league health and emotional issues to manage, and I couldn’t allow fear to envelop us.

I surrounded her with the grandparents and great-grandparents as often as I could.  And every year that ticked by was a blessing, because she built her own memories and relationships with each one.

The fathers and grandfathers...

The fathers and grandfathers…

Then, in June 4 years ago, in 2012, we lost GGPa, Grandpa Al – Ken’s Dad.  He was so much a part of our lives and our family.  Ken embraced us as his own when he married Mom, and his family was no different.  And Meghan and GGPa… well, she was his “Sapphire,” and they could certainly light up each other’s eyes.

In the fall of 2013, Grandpa Tom got sick.  He was never ever sick.  But, this time it looked very wrong.  And it was.  In about 3 months time, he was gone.  Snatched away at 65.  He had made such an effort to be around Meghan.  He was so deliberately making up for lost time and I loved him for it. They had their own set of memories…

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A few months later, in October of 2014 Great Grandma Gen headed up to meet the angels she missed for so many years…

And then in March of this year our beloved “Pop” was gone.  Pop was larger than life.  And even at 96, seemed almost invincible.  Until he wasn’t.  The ache is deep, and raw.

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Five years ago I bought so many Father’s Day cards, people would laugh at me.  Five years ago I remember telling Meghan how thankful I was to need to buy that many cards.  Five years ago, I couldn’t have predicted…

So much has gone on in our lives on a medical front.  If I count loosely I would say it’s been about 10 surgeries between us since that Cowden’s diagnosis in 2011.  So often we feel like we are bouncing from one hospital or appointment to another.  So often we are scheduling appointments instead of relaxation, surgeries instead of vacations.

But, we make a point to stop.  To try.  To focus.  Yesterday was a tough day.  The pain was a bit overwhelming at times.  But, the gratitude runs deep, for the family we have.  For Felix, the best husband and father we could have ever asked for.

Felix took some of Pop's tools from his car, and brought them back to their glory.  Those two had their own special bond.

Felix took some of Pop’s tools from his car, and brought them back to their glory. Those two had their own special bond.

Tonight there was wonder in Meghan’s eyes.  She saw the first fireflies of summer after swim practice.  They went out to get a closer look.

And I peeked out onto the back deck to catch a glimpse of my 5’8″ daughter on her father’s shoulders – to get a better picture of the sunset.

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A better view on Daddy’s shoulders – no matter how tall!:-)

I smiled, in spite of myself.  Tonight it’s not about the weeks ahead.  Tonight it’s not about the next surgeries and appointments.  Tonight, it’s about tonight.  It’s about going to bed a little later so as not to miss the little things.

Tonight is about making memories.  The little ones.  The ones that matter.  The ones you carry in your heart forever.

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The Days are Long, but the Years are Short…

And we remain forever

#beatingcowdens

Punched in the Stomach…

…over and over and over again.

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Sometimes that’s the best way I can think to describe it.  There are days, so many days, when it’s like a sucker punch that takes your breath away.  It’s not going to knock you to the floor.  You’re stronger than that.  But, man, it knocks the wind out of you.

First, it’s the drive.  The traffic.  The hours spent headed to the appointment.

Then it’s the “hurry up and wait,” as you strive to be there for your 2PM appointment that COULD NOT be changed to later.  Only to wait until after 3 in the waiting room.

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After that it’s the news.  No matter what the appointment is, a Cowden’s Syndrome appointment rarely ends with overwhelming optimism.  Well, because they are all so unsure.  So they are afraid.  And I get it.  But, then they tell you the parts they DO know, and you sometimes just want to sit in the corner and bang your head.

THEN after all that GOOD fun, is the drive home.

Usually all in all about 5 hours roundtrip.  Whether it’s Manhattan or Long Island it doesn’t really matter.  It’s 5 hours at a clip that you’ll never see again.  Plus hours and hours analyzing…

About the only GOOD thing that comes from all these is the time spent chatting in the car.  Because my kid is pretty cool, and I enjoy her company.  I just wish we had more time to be together, at the beach, or a concert, or somewhere fun…

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Today it was the orthopedist.  He operated on Meghan’s knee in May of 2015.  It was the 6th surgery on that knee, all ramifications of a pesky AVM (arteriovenous malformation) wedged somewhere under the meniscus.  After the surgery there was PT, then a 6 month follow-up.

In November he released her from PT, and asked for another 6 months.  In April he was so bothered by what he saw he brought us back in 2 months.  He was troubled by her muscle spasms, and her generally being unwell.  The conversation that day led us back to the hormone she was on after the December d&c, the one with the precancerous cellular changes.  The medicine that was supposed to help keep the uterus in check.  The medicine that seemed to come up an awful lot in April as the source of many problems.  We labored over the decision and consulted almost every doctor, but ultimately decided to ditch the medicine and hope for the best.

Today the muscle spasms were gone.  Evidence that they were caused by the hormone.

But, there was another pile of information to digest.

Sometimes it’s so hard, because you ask questions, and you just don’t always get the answers you want.

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What about that right leg, will it ever match the left in strength?  Do you think the foot will catch up?

No, it’s not likely.

Impact activities, even walking over a half mile, cause knee pain.  Will this ever resolve?  Can she do anything to help it resolve?

No.

So, what do we do when we have to walk far distances?

A wheelchair.

And the conversation continued like that.  He is actually quite well spoken, but today his words hurt.

He is a good doctor, a good surgeon too.  But, he is honest.  Necessary,  And painful.

We got some suggestions for strengthening.  And a script for a refresher with our favorite PT.  Progress will happen.  It will just be slower.  It will take longer, and harder work than any of her peers.

We don’t use the word fair anymore.  It’s all relative.  Nothing is really “fair.”  But, some days it’s harder to find the bright side than others.

Some days, even when the doctor tells you it’s not right that someone your age should have so many limitations, it doesn’t make it any easier to hear.

Because the reality is what it is.  There is both gratitude and pain in the mobility she has.  Her drive, her focus, extends beyond limitations.  She wants to be free.

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Yet, somehow even on the toughest days, I have solace that there is a plan.  And it will continue to unfold for both of us.

Tonight we recover from a few sucker punches with chocolate cookies and coconut milk ice cream.  Tonight is not for the bright side.

Tomorrow will be different.  Tomorrow is school.  Full of people who do not know, or who are virtually unaffected by the realities of Cowden’s Syndrome.  And tomorrow is drama.  And tomorrow is swimming.  Tomorrow will be too busy not to press on.

Tomorrow will be for working on ways to keep moving forward.

Tonight will be for resting.

Tomorrow is for

#Beatingcowdens

N.O.S.E. an Acronym that Makes Sense!

So many things in life make no sense at all.  I don’t need to fill in those blanks for you.  No doubt you have a bunch of your own things in mind.

The illogical is part of our existence here.  What we do with it is what defines us.

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Meghan’s right foot stopped growing a few years ago.  I didn’t notice for a little while.  She was already wearing a size 9 in the 5th grade.

She had had 5 surgeries to embolize an AVM (arteriovenous malformation) in her right knee.  At some point they theorize that by slowing the blood flow to the AVM, the blood flow to her lower leg and foot also slowed, stunting its growth.

Now, on the surface that may not sound like a big deal, and I guess for a while it wasn’t.  Most people have feet that are slightly different sizes, many a half-size off.  Most people are still able to fit them into one pair of shoes.

But the left foot kept growing.  Right now it’s stalled at a 10.  We can’t be sure it it’s done.

The ramifications of this began to have far-reaching effects. The different foot size adjusted her entire stride.  The smaller foot is weaker, and naturally over pronates.  There began to be back and shoulder pain…

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There was one more knee surgery last May – to clean out some residual blood and quarterize a few spots in the knee-joint.  That proved to make the knee even a little weaker.

There came a point where each foot needed its own pair of shoes.

Keeping her in a pair too big would compromise the weaker AVM leg.  Putting her in a pair that was too small was just impractical.  So we began to buy shoes in a 9 AND a 10.

Now we consider ourselves fortunate to be able to buy two pairs of shoes at a clip.  We have only one child, and I find good shoes to be a wise financial investment.  Buying the two pairs is never what bothered me.

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My trouble came with what to do with the other shoe.

I threw some away, but that didn’t feel right.

People, not thinking it through, directed me to odd shoe websites.  But, the odds of me finding a perfect match were slim to none.  It didn’t make sense for us.

So, the shoes began to stack up in the basement.

Some internet searching brought me to National Odd Shoe Exchange (N.O.S.E,)  And a million bells and whistles went off.  Here was a real, 501c3 charity that accepts “in kind,” or actual SINGLE SHOE donations.  They pair them with actual people.  They work with amputees.  They work with real people, registered in their database, and they send them shoes!     History of NOSE

And, since they are a registered 501c3, our donation, as well as any postage, are fully tax- deductible.  An added, unexpected bonus.

So, today I mailed a box to Arizona.

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In it were three “pairs” of shoes.  10s for the right, 9s for the left, just the opposite of my girl.

And somebody, somewhere, or maybe even several “somebodies” will benefit from Meghan’s adversity.

It seems almost ironic that as I write tonight we are nursing a left shoulder that “froze” today,  more than likely the result of the
“off sides” stride.

It locked up in the pool.  During the last practice before the big meet this weekend.  She has trained so hard.  She fights every obstacle head on.

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Feisty.  Tenacious.  And in pain.

Tomorrow there will be more ice.  More stretching.  More anti- inflammatories.

There is no pause for this young lady.  Life keeps careening from one obstacle to another.  Yet, she walks straight and tall and with her head high through it all.  Counting her blessings.  Growing up too fast.

So many things make no sense at all.

But for us, tonight, the knowledge that in a few days time 3 “pairs” of brand new shoes will be available to someone…

Well for us, that is a bittersweet way to find some sense in this big mess.

#BEATINGCOWDENS

#ONESTEPATATIME

 

In a Dark Room…

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I’m thankful that some nights she still invites me to chat with her in her dark room

Late

After she should be asleep

I’m thankful that we can relate to each other

Different – incredibly different

Yet so much the same

Yesterday I hurt a lot

An unusually extra tough day for me

But I looked at her and I kept on plugging

She knows no other way and leaves no other option

I hate that she bears this burden

There are days it could destroy me

But it doesn’t

She simply motivates me to keep going

She pushes me to be a better person

A better mother

A better human

Often without saying a word

Sometimes in her dark room we’ll share

What we worry and wonder about

Sometimes we tell things we’d never tell another

Sometimes we laugh

Sometimes we cry

Mostly we learn things

Still after all this time we learn things

Like yesterday when I told her that I am luckier because I have her to keep me going

And she looked at me quizzically and wondered aloud

Why do you think I keep going?

And in that moment there was even more clarity

Daughters and Mothers

Mothers and Daughters

We worry and wonder

We argue and spat

We chat and share

We battle

Not each other

But this disease

Together

Different but the same

Pain, surgery, worry, wonder, loneliness, anticipation, anxiety, and sometimes terror

I hate every moment of this road she has to travel

But I am selfishly grateful for the quiet, determined way

She keeps me balanced and focused on what matters

So we can help each other

And remain

#Beatingcowdens

FOREVER

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