Pain is temporary….

At least I hope so.

I vaguely remember a shirt my older sister used to wear when she was swimming.  The message was something like this.

pain is temporary

It was motivational, meant I am sure to remind the young swimmers that their fatigue from grueling practice would translate into race times that would forever keep them proud of their accomplishments.

And in that case, I hope the pain, the pain of lap after lap, translated into successful meet times that led to a gratifying feeling of pride.

But what about when it’s not that neat?  What about when you can’t sort it out in a package, or tie a bow on it?

There is emotional pain.  The empty pain of loss.

As I type, I have two lit candles on my desk, celebrating the 60th birthday of my uncle in heaven.  The pain of his wife, his children, his mother, my dad, (his brother,) can not be explained.  The loss is raw.  The pain is an open wound.

I think of my college roommate, and her nephews and sister-in-law preparing for Christmas without their 36 year-old father.

I think of the loss of my Dad, just over a year ago, and the flood of memories and seasonal connections complicating my every thought.

I think of the loss of our beloved Allie Girl last week.

I think… and I think.  And I know how badly it hurts.  And I know we are so far from alone.  I am grateful not to be able to imagine the depth of the pain some feel.

pain is real

Pain is temporary…

There is the pain of anxiety.  Very real.  Depression.   Equally crippling.  I’d be lying if I said I haven’t battled with both my whole life, amped up by this Cowden’s Syndrome torment under which my girl and I will live forever.

Try as I might, the worry is stifling.  The sense of urgency all the time is exhausting.  There is little room for error.   Screenings, medications, lab work, surgery.  All scheduled with precision to conserve sick days and minimize missed school.  Except when I can’t.  Like when it’s an emergency.  Then we just roll with it.

The anxiety weighs on my girl as well.  11 years old, trying so hard to be normal, and to fit in.  But, the reality is there is no “normal.”  So she fakes it as best she can, blessed to be surrounded by some spectacular kids.

But, she gets mad.  Mad at the doctor, mad at her knee, mad that she takes two steps forward and three steps back, in this poorly choreographed dance she is forced to participate in.  Mad that she can’t be “the best,” because her own best is unacceptable to her.  And some days when she is extra mad, I wonder about the thyroid.  Cause its absence affects all things.  And this week came the phone call that the numbers have increased 400% over the last 3 months again.  So we continue to raise the dose of a medication that I don’t think does a damned thing for her.  We play the game while I search, frantically for someone to “get it.”

Pain-can-change-you

Pain is temporary…

Except when it’s chronic.  And it involves every single minute of every day.  And the one medication that does work is off-limits.  And the surgery to plug the hole in the artery that was likely provoked by the absence of THAT medicine, causes and abundance of scar tissue and this feeling of a lump the size of a cashew or two exactly where the knee should be able to bend.  And you have no way of knowing if its going to get better, or happen again.  Any minute.

And the pain, well if it was only in your knee it would be better.  But it’s in the shoulder, and the neck, and maybe it’s caused by the feet over a 1/2 size off, or that slight curve in the lower spine, or something else no one cares to figure out.

So, you gather your spoons.  And you borrow a few.

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And you press on.  Through sixth grade and onto the principal’s honor roll, and through student council, and drama club, and fundraising activities, and swimming your butt off.  Cause what choice do you have?

hopeful-spoon

Pain is temporary…

We talk about injury pain, vs healing pain.  Tonight’s pain counts as the healing type cause it was generated largely by exercise.  This pain is movement in the right direction.  Swimming heals the soul.

You have to find what heals the soul, or you will lose your mind.  There is no other way.

Pain is temporary… cause it needs to be.

You have to find what brings you peace.

Two weeks ago on December 4th, I chose this.  The butterfly breaking out of the cocoon.  Free forever.

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I miss my Dad.

My heart is full.

But we press on.  Because pain is temporary.  Even for all of us in the middle of the worst pain of our lives.  The sun will shine again.

Channeling that energy into raising awareness, fundraising, and helping those whose sun hasn’t come back up.

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Jeans for Rare Genes Fundraiser  (Click here to support our fundraiser for the Global Genes Project and the PTEN foundation)

We are living real life, AND

WE ARE BEATING COWDEN’S TOO!

All Dogs go to Heaven…

Although there is some debate on that, I stand with Billy Graham.

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We lost our Allie Girl today.  And just when I thought there couldn’t be anymore sadness, our hearts are broken in half.

Allie found us.  Rather, she found Felix, in August of 2007, when PLUTO Rescue did their events at Petsmart.  It was August 4th, Felix’s birthday, and we stopped in just to grab a bag of food for Lucky.  Meghan and I walked through the aisles enjoying some of the puppies around for adoption.  Ready to leave, I asked, “Where’s Daddy?”  And there he was, knee to knee – eye to eye- with Allie.  “This is the dog I was meant to have,” he told me very matter-of factly.

Just a week or so after they met.

Just a week or so after they met.

I came up with a litany of reasons why a second dog was a bad idea. ( We already had Lucky)

“What if they don’t get along?”  (Solved in 2 seconds flat when they met outside Petsmart.  They were fast friends.)

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“We are having company for Meghan’s birthday next week.”  (They offered to delay the adoption 2 weeks.)

“Our yard may not be big enough.” (We passed the home visit with flying colors.)

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“We don’t have the money right now _” (I was grasping.  The fee was so reasonable. And they offered to postdate the check a month.)

I lost.

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But I won.

Big time.

Allie joined us on August 12, 2007.  The guesstimate for her age was three.  I suspect that was conservative.  She stepped into our home with none of the puppy nonsense new dogs cause.  She was trained, didn’t bite the furniture, or pee on the rug.  She needed a little tiny training to settle down with her food.  Easily done.  And she really was the perfect dog.

Allie waiting until Felix wakes up

Allie waiting until Felix wakes up

She was Felix’s dog from the get go.  No matter where he went she followed.  She slept on his feet at the TV at night.  She waited for him on the weekends if he slept in.  She sat at his feet when he whistled.  She greeted him at the door.  She knew it was he who had freed her from the cycle of adoption and fosters, and found her her forever home.

Her “tough” side – much like Felix’s, was put into check with the right love.

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I took a bit longer to catch on.  It took a few baths, and some nail cutting, and adjusting to calls from the groomers that they couldn’t service her.  I had to understand her, her abandonment, and her need to trust again.  Once I “got it,”  we did just fine.

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Mostly I fell in love with Allie because she loved my Meghan.  I can remember nights, and there were so many sleep deprived nights,  that Meghan would wake crying, and if we didn’t hear fast enough, Allie would come and get Felix and I and make sure we took care of her.  She became so protective of Meghan – from “hide and seek” to watching her in the pool, to not resting until Daddy dug her out of the snow bank, Allie knew Felix was her master, and protecting Meghan was her purpose.

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allie3

And how could I not love the dog that loved my two favorites?

Meghan, being without siblings, took to the dogs as her “furry sisters.”  She always used the number 5 to represent her family.

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And when she was sick, or hurt, or recovering, as she so often was, Allie was loyal and attentive always.

Being sick is the pits.  Having Cowden’s Syndrome is horrendous.  Having a dog or two to love you through it – definitely a bright spot.

There were so many nights.  More than can be named.  So many nights of tears and frustration and sadness and anger.  Soothed by the love of a dog.

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We love Lucky.  Very much.  But we always said Allie made Lucky a dog.  Allie turned her in the right direction.  Made her less neurotic and more normal.  They were sisters.  A good pair.

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Cowden’s Syndrome just got a little harder to swallow.

Life just got lonelier.

Allie got sick fast.  Maybe a few weeks of not being quite right.  And a few days of really being laid up.

We took her to the vet Sunday.  It looked bad.  I took her back today.  It was over.  Her belly was full of fluid.  Even without eating – 2 pounds heavier than Sunday.  They didn’t offer to do blood.  Or treat.

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“This is it,” the vet said.

And Meghan and Felix came, and we sat as a family.  And we said goodbye together.  We hugged, and held, and loved and cried.  Then we left.

Our world, and our lives forever changed.  Richer for our experiences, more painful for our losses.  For only those who love deeply, can hurt.

Thank you Allie.

Hopefully Grandpa Tom finds you.  You two always got along.  Cause I firmly believe I’ll see you both again.

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… some rain must fall.

Last summer we invested in a new roof for the house.  I’ve never regretted it.  Truth be told we had no choice.  There were leaks and dry rot.  All sorts of potentially serious places for significant damage.   Lots of horrendous storms have pounded down on this roof since the summer of 2013 – both literally and figuratively.  But we’ve stayed safe and dry.  I have to figure its some combination of strong plywood, and a well done roofing job, coupled with our strong family bond, deep faith, and our ability to keep laughing.

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The weather forecast this week is pretty awful.  And I started thinking about how, “into every life some rain must fall.”  And I started to wonder, whether maybe we’ve actually had enough rain.

Cowden’s Syndrome brings its own share of cloudy, overcast, generally awful days.  And life, well it can get dicey and complicated even without Cowden’s Syndrome.  This year has been wild.  Full of so much sadness, and hurt, and sorrow.  And in between there peeked in some fun, happy times.

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This month has been tricky.

These last 2 weeks….

I’m really starting to think it might be time to consider an ark.  I’m not wallowing.  Nor do I think we are the only ones buried enough to need that ark (we’ll share,) but wow.  Just, wow…

rain 5 ark

Two weeks ago tonight we rushed Meghan to Lenox Hill Hospital for emergency surgery on the AVM in her right knee.  The 50 ccs of blood were removed from the knee-joint, and by Wednesday we were sent on our way.  Thanksgiving weekend was spent home.  Low key.  Leg up.  Resting.

We had goals.  All geared towards December 8th.  Goals set by the medical team.  Swim practice was to begin again tonight.  And Mom, FYI – goals are different from plans… :-)

We slowly weaned off the crutches, and the pain medicine.  We moved to an ace wrap as needed.  By last Monday the 1st she went to school still in pain, but unassisted.  The swelling was going down.  The healing had begun.

But by Friday she couldn’t do it.  Had to stay home because of the pain.  The swelling looked a little off too.  More rest.

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Sunday she woke up late and come down the stairs declaring the pain was worse – and “different.”  The knee looked horrendous.  And very similar to its pre-op state.  More resting.  Some pictures.  Some brainstorming.

ER 11/24

ER 11/24

Living room 12/7

Living room 12/7

All the while Allie, our oldest dog was having troubles of her own.  Allie, lethargic for a bit – collapsed on a walk.  Felix called me to pick him up carrying 70 pounds of dog.  Off to the vet for abdominal x-rays and a negative test for pancreatitis.  There was no discrete mass of the x-ray, just some shadowing.  They decided to try to treat for pancreatitis despite the negative test.  There aren’t too many other good options and I am worried.

And so we got medicine for Allie, and got her boiled chicken and rice for her bland diet.

And we took pictures of Meghan’s leg and elevated the knee.

Today we got up early to give Allie her medicine together.

Then Meghan dragged her painful, aching leg around school until I could get us an appointment.

1:30 arrival at Lenox Hill.  Sonogram initially showed no blood.  Then, wait for it…. there it is.  But no obvious spot its coming from.  Shocking really.  Could it be residual from the procedure two weeks ago?  It looked to be about 5ccs.  Nothing compared to the 50, but I remember a time less than 5ccs of blood in the knee-joint freaked them all out.  Now all of a sudden – we’ll just wait and see.

They used words like “discomfort,” and “irritating.”  She used words like, “excruciating.”

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Not the first time we haven’t seen eye to eye.  But he’s all we’ve got.  One of very few doctors in the north-east to operate on these in kids.

I get not racing back in.  I do.  But validate the kid for the love…. I know she’s super sensitive, but that just means she feels EVERYTHING, INCLUDING the stray blood in her knee.

Wrap it.  Elevate it.  Put swim off another week.  (Tough talk from the guy who initially said she wouldn’t even need crutches.)

In the car Meghan told me to get my Christmas shopping done.  Just in case.  She hopes she’d wrong – but it doesn’t feel right.

My money’s on her- and it’s a bet I hope to lose.

Allie, she’s super mushy.  Who knows?

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Online shopping here I come.

I’m done with the rain.  Really over it.  Rainbow anyone?

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Christmas Letter 2014

In December 2013 I was in no state to put out a Christmas card.  Dad had died – today, December 4th.

My heart hurts.  They day was tough to contend with. Memories are a comfort and a source of agony.

But, this year I decided, despite additional sorrow, and stress, that it was essential we set some sense of normalcy.

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So we put together a Christmas Card with our favorite Disney pictures.

And I put together the most concise letter I could to describe a busy 2 years.

(Click on the link- IT SUMMARIZES SO MUCH!)

Christmas letter 2014

And to keep it fun, I added our flyer for our fundraising breakfast in 2015.

Rare Disease Day Fundraiser

Meghan is now a week post op.  Not a minute. And I mean a minute.  Goes by without the realization that she had a hole in her artery.  There will never truly be peace.

But life marches on.

Today we brought two balloons to the cemetery, a flag and a butterfly.  Very appropriate.

Tomorrow she goes on a trip to NYC.  Here’s to hoping the knee holds.

Back to swimming on Monday- with her eye on some improved times.  Life goes on.

We continue to be BEATING COWDENS!

Gratitude

didnt see it coming

Gratitude.

It’s always a good time to be grateful.  Especially Thanksgiving week with catastrophe averted.  Even full of memories from a year ago, I feel gratitude.

Just a week ago I wrote a post called “Plot Twist”

http://beatingcowdens.com/2014/11/17/plot-twist/

where I mentioned the AVM in the knee was starting to become a problem.

One day I will learn to trust instincts.  I will look back on signs and think – I should have seen that coming.  But, for now I remain a bit of a slow learner.

See, in May when we ended up with the gastritis mess, there were warning signs.  For days prior she spoke of the “fire” in her throat.  Of this general feeling of being unsettled.  And then everything broke down.

Monday was not the first time in recent weeks she had complained about the knee.

In August, about three months after we stopped the Celebrex, there were signs.  Subtle signs.  We went for the MRI.  We went for the visit.  The doctor saw “something,” evidence the AVM was still “live.”  He told her to wait until there was pain, and then come see him.   Our appointment was for December 1.

The pain has been progressive.  But, right or wrong, having a rare disease, and living with a child who has one too, I often have on my “suck it up and let’s go” personality.

“Mom, my knee hurts.  I think it’s swollen.”  

“Yes. it’s a little swollen, but mine is too.  You’ll be ok.”

“Mom, my leg is throbbing.  I can feel it pulsing.”

“Mine does that too – here, feel.  Now let’s go – we have to get to school”

Ok, so looking back, perhaps these are not normal conversations.  I am in consultation with a vascular surgeon to address the messiest of my leg issues – as soon as I can fit it in.  Maybe most parents would have been more bothered.  I mean I WAS bothered.  But, if I stopped every time – goodness, we’d never even get out of the house.  If I addressed every pain – I’d give this disease more power than I’d like it to have.

So for now, we “suck it up” together.  Different.  But the same.

We talk about other people’s pain.  We wonder about different types of pain.  We think about what it would be like if the pain could be fixed.  We wonder about kids who use pain as an excuse.  We acknowledge that you can never know what goes on in someone else’s body.

So we adopted positive thinking and visualization.  She drew a smiley face on that knee to convince herself she could get through it.  And she pressed on.

Sunday, while I was in Vermont, she was at a swim clinic.  And Monday, she finished an hour and change of practice.  Walked past me smiling.  Walked out of the locker room and basically fell to the floor.

I did some more of my “suck it up” talking, as my heart sank.  This was the real deal, but we were too far from the car.  Everything about her body language told me we were in trouble.  I finally, by Grace alone got her into the car, and headed immediately to urgi care.  We lasted about 10 minutes there before we were booted to an ER.  The leg was getting frighteningly larger by the moment.

 

The knee with the AVM

The knee with the AVM

The "good" knee

The “good” knee

My gut.  My instincts told me to go to the knee surgeon.  So we threw a bag together and got to Lenox Hill Hospital on 77th street.

After I got them to page her doctor, we immediately were notified we’d be admitted.

When we got to the room at 4:30 AM the tell-tale “NPO” (nothing by mouth – for any surgery rookies) was on the door.  Can’t knock the kids timing.  I knew he operates Tuesdays.

The team arrived mid morning to assess.  They set her up for 1 PM surgery.

“That’s blood.  And it has to be taken care of now.”

Ok – show me where to sign.

Blood and joints don’t mix.  Not without consequences.  This I know from experience with this child.

Get it out.

And as I waited… that awful waiting time… my mind wandered.  I thought about her swimming, and the time she is trying so hard to beat.  I thought about how much harder she’ll need to work to get it back together.  I thought about it being unfair.  And I thought about a mom in California whose extended hours on the phone to me as we were panicking and newly diagnosed were of such solace.  I though of the hell her girl has gone through.  Over and over.  Then I thought about my internet friends in Australia.  One young lady who had her thyroid removed AGAIN.  Yep – two partials, and then one side GREW BACK.  Unfair.  Then the ultimate lesson in unfair in the countless brain surgeries, 10, 12 hours at a clip for a young woman with a similar vascular condition to Meghan in a much more dangerous place.  I thought about her life on hold.  I thought about her recent surgery derailed as they discovered multinodular goiter on the thyroid.  I wished I could have tea with them.  Right then.  To talk to someone who does this.  This hospital thing.  This surgery thing.  Like its their job.  Cause that’s just what we do.

And there are no contests.  No one has to have it worse.  No one makes you feel like it’s not important.  This just is our life.  This is life with Cowden’s Syndrome.  Beat it.  So it doesn’t beat you.

And when they came to get me, to tell me she was in recovery, they told me they drained 50ccs of blood out of that knee-joint.  Apparently there was a hole about the size of a pea.  It got plugged.  A fast flow leak.  They hope that’s all of it.

This is about 50ccs of water - roughly the same amount of blood that filled her knee joint.

This is about 50ccs of water – roughly the same amount of blood that filled her knee joint.

Flashback to 2012.  Last surgery, when the doctor was so unsettled that there was ANY blood in the knee-joint that he told us about the damage it could cause and sent us to Boston for a consult with a doctor who could scope the knee-joint.  And we went.  But we never went back. Things got better.  We started Celebrex a month after that surgery in 2012.  That was number 4.  Number 5 was yesterday.

In 6 weeks we’ll go back for post-op.  We’ll talk about whether things are better.  There is someone in New York, on his team, doing that scope now – if she needs it.

In 6 weeks I hope she’s kicking some serious butt in the pool.  I hope this is a memory.  An update in the growing medical file.

Sometimes the only option..

Sometimes the only option..

 

This is life.  This is life with Cowden’s Syndrome.  This is our life.

Everyone has something.  And yes, it could be worse.  But right now, at this moment – we are tired.  And that’s OK too.  I am emotional, remembering a year ago today we admitted my Dad to the VA hospital that he would never leave.

Thanksgiving will be quiet tomorrow.  Just the three of us.  And reflective.  This week is going to be wracked with emotion.

For tomorrow, I’ll take the fact that my husband makes a mean turkey and a fantastic Gluten Free stuffing as a win.

The little things ARE the big things.  We ARE BEATING COWDENS!

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I used to be afraid of roller coasters

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I can’t walk.  It’s my knee.”

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

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

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

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

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

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

AND regardless – we remain BEATINGCOWDENS!

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Plot Twist!

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

Global Genes hit this one spot on!

Global Genes hit this one spot on!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

…You held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready ’cause I’ve had enough
I see it all, I see it now…

…I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar…

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Kid of Achievement!

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

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

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

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

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

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

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

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

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

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

She delivered this speech with incredible poise.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here is a video of her speech.

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

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One after another people approached her, and complimented her.

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

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

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

Kid of Achievement indeed.

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World, you haven’t seen anything yet!

Here’s the link to our local paper….

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

 

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

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

 

Competence, Compassion and Dedication? All at once!

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

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

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

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

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

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

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

The doctor was amazing.

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

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

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

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

Healing... less than 24 hours later.

Healing… less than 24 hours later.

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

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

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

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

And finally a doctor who ALSO feels this way!

And finally a doctor who ALSO feels this way!

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

“Of course…”

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

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

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

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

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

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

In the mean time I have quite the homework assignment.

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

Absolutely, Positively, Negative.

I am rarely given a straight answer on anything.

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

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

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

But I did it.  Because I promised.

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

13 genes tested that are related to pancreatic cancer.

13 genes negative: NO CLINICALLY SIGNIFICANT VARIANTS DETECTED.

No guarantees.   But, life has none.

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

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

Deep breath.

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