Life begins… at the edge of your comfort zone…

 

Roller Coasters

Nope, not us.  No way.  No how.  Terrifying.  Not going to happen.

Until last week.

Something clicked inside her head, and she decided that she had come to conquer.

There was a pit in my stomach when she first declared she was going to go on Space Mountain.  Roller Coasters have never been my thing either.

But, she even decided who was going to sit in front of her and behind her.  No getting out of it for me.

She told me that she had been through a lot in her life.  And that she shouldn’t be scared of a ride.  True.  There was that quote by Eleanor Roosevelt we had read, and referred to so many times.

No not the other quote, “The only thing we have to fear is fear itself.” – FDR

This one, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” – Eleanor Roosevelt

The first time we were both a little scared.  Then there was the second time.  And by the third time she owned it.

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_DSC2818“Rocking Roller Coaster!” she declared.
And so we headed to the Aerosmith ride that wasn’t even on the consideration list a year ago.  Twice.  I went too.  And I really didn’t mind.

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“Life begins at the edge of your comfort zone…”  Words I am learning to be truer each day.

And so in the week that was, we rode Space Mountain, Aerosmith, Big Thunder Mountain, Seven Dwarfs Mine Train, Test Track and even the Barn Stormer together.  I did Star Tours too, but virtual reality isn’t really agreeing with me anymore.  Maybe too much reality?

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So she went on Mission Space with her Dad – twice.  Once on the beginner level, then on the advanced.  And they rode Splash Mountain too – just because.

It makes me happy to see her conquering fears.  There are so few of them, that I am hopeful nothing like a roller coaster ever stands in her way.

And as I reflected on the idea that this kid, this amazing kid had brought me past a fear that had plagued me for decades, I found myself hopeful that she will always dance…

“Never settle for the path of least resistance… I hope you dance…”

“I Hope You Dance” – Lee Ann Womack

I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.I hope you dance….I hope you dance.

“It is only with the heart that one can see rightly…”

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There is something about having a kid who struggles, whether physically, mentally, emotionally, or in any other capacity, that forces you to open your heart and mind to things you may never have “seen” otherwise. We are blessed. We have … Continue reading

Avocado and Isagenix – What’s in YOUR suitcase?

It’s been almost two weeks – a long time for me not to write.  My head is spinning with things I need to get out in my blogging “therapy” sessions.

As I sit in Orlando International Airport, delayed by hours on the sunniest evening all week, I find myself reflecting on the week that was.

Even though we have been at Disney 7 years in a row, and even though we probably should have stayed home to lick our wounds this year, we threw caution in the wind and decided there would be plenty of time to make money, and time to make memories isn’t always there.

Plus, in 2014 alone there was that thyroidectomy in February that threw my girl’s body into some wild unbalanced state, and that week in May when we learned all about gastritis.  (Caused by the pain medicine she had lived on for years.) So after spending months trying to get her stomach back in balance, and juggling the gluten, dairy, soy free, and largely preservative free diet, with the new restrictions of no citrus, no chocolate, no tomato, we contemplated cancelling the trip.  But we knew that would seem more like a punishment than a precaution.  So the reservation held – August 5 -12.

In the week leading up to the trip time seemed to fly by.  I barely got her settled with enough clothes, got us a functional suitcase, and got us packed in time.  And as we were packing I began to gather food.  See, when you travel with a kid with food allergies, you don’t travel without food – ever.  Even though Disney is “the happiest place on earth,” and even though almost every chef we encounter is masterful at creating meals to please her very restricted palate, you still need to pack the “staples.”  There has to be a supply of dry fruit, cereal, pretzels, applesauce, cookies, and bars.  In the past we also always packed tomato, and barbecue sauce too.  Every morning we would fill small containers and have it to flavor anything dry along the way.  Except this year tomato was equal to painful reflux, and we weren’t about to try it out as we traveled.

So, we went to the next best thing – avocado.

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I have never been a huge fan, but my Puerto Rican husband gently introduced healthy protein into her diet and it was so well tolerated.  She liked it to moisten food, and there were plenty of days she ate a whole one.  So, into the suitcase went a container full of 8 avocados.

Use what you know.

And in another container nearby were several packages of Isagenix shakes.  Those, I had packed with intention of using them myself.  So glad I did.

When we arrived in Orlando Tuesday the 5th after a 6 AM flight, it was 8:30.  We rode the Magic Express and got to the hotel by 10:30.  At 10:45 the luggage arrived, and by 11:20 we were unpacked and on the way to the Magic Kingdom.

And find the Magic we did.

We spent the day riding, and laughing, and watching and taking in all the wonder around us.  We had lunch at a trusted favorite, the Liberty Tree Inn, and the turkey, stuffing, mashed potato and gravy were prepared to perfection.  Her stomach was happy.  We were happy.

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Dinner was with some old friends at the Contemporary, and we willed the time away searching for “Hidden Mickeys.”  The “Fab Five” greeted us, and the chef took us to the buffet.  I tried to choose carefully, as the selections seemed a bit questionable.  I was assured they were within her dietary restrictions.  And there was the drink.  We asked for it diluted, as it wasn’t her normal fare.  But he was busy and I suspect by the third glass the waiter had forgotten to dilute it.  And there was the GFCFSF sausage… and…

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By the time we sat for the electrical parade we were all tired, but she said she felt something in her throat.  She asked me for food, and even as I handed over the pretzels I should have known better.

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She slept fitfully.  So much so that I kept waking to check on her.

“New room… new place.”  I kept telling myself…

And in the morning when we got up to leave we just about made it to the lobby when she said she couldn’t go.

“Houston… we have a problem.”

We exchanged those “uh-oh” glances – Felix and I.  And we followed her to the room.

And barely did she make it in the door then the familiar violent vomiting from May returned.  So much.  So forceful.  Like her body was not going to stop until it got rid of every single offending morsel in her body – whatever it may be.

It went on for hours in our hotel room in Walt Disney World.  And every time it seemed to calm and we tried water, bread, pretzels… it all began again.

We called our GI from home who instructed rest.  And we looked at our girl laying so still and so sick on the bed, and we searched out the travel insurance brochure.  After two hours on the phone with more people than I care to count, we arranged for a doctor to visit the hotel.

And while we waited the staff had seen my tears, my desperation, and prepared a bag with some balloons, and coloring books, and pins and UNO cards to pass the time.  There are good people.

But by then – at 5 – she had been without food or drink for 5 hours and was starting to look better.

He was amazing, and unusual, and smart, and introspective.  And he sat with us for a good hour learning about Meghan.  Then he sized up that she was not dehydrated.

“What do we do?”

“Go with what you know.”

Not so easy hundreds of miles from home.  But, she was hungry.  And there were avocados.  And my eyes hurt from crying in absolute frustration that we had just breached her forever “doctor free” zone.

Then he asked what she drank and we said “Coconut Milk.”  And just like that he was out the door headed to a whole foods 6 miles away.  HE took money only for the milk itself, not for his gas or his time.  And we had options.

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WHO does that?  This stranger… this “standby doctor” so moved and so interested in helping…

So there was avocado, alternating with coconut milk at very deliberate intervals.  And once the avocado held itself in place we had a few options.

“Can I have a shake?”  MUSIC TO MY EARS…

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A half shake in 8 ounces of coconut milk.  Followed by a half of an Isagenix meal bar.

By 9 she was well enough for a ride around the hotel.

By the next morning we cautiously resumed our trip.  With Isagenix, and an avocado in my backpack all day.

Felix said we should call her our “rubber band-” stretched until you think she’ll break, then she finds a way to spring back!

 

Suck it up, buttercup

beatingcowdens:

I don’t often reblog. But I reread this a bunch of times and decided it’s well worth sharing. The Pink Underbelly has some excellent insight!

Originally posted on The Pink Underbelly:

This post is not going to make you feel good. It will not mince words. It will not play devil’s advocate. The topic hits home on a very sensitive subject for me, and I’m not in the mood to play nice. Forewarned is forearmed.

Proceed at your own risk.

The American College of Physicians has released a recommendation that advises women to forego their annual pelvic exam because such exams cause “emotional distress, pain, and embarrassment.” As the ACP’s former president, Dr Sandra Adamson Fryhofer, stated, “The pelvic exam has become a yearly ritual, but I think it’s something women don’t necessarily look forward to. A lot of women dread it.”

The ACP also says that in non-pregnant, asymptomatic women with no known cancer risk, pelvic exams don’t often detect disease or save lives, and that the exams do more harm than good. Pap smears are still recommended, however, because they…

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First Pitch!

We don’t watch many sports in my house.

Meghan’s sport of choice is swimming.

So it came as a little surprise when she was asked by the Borough President if she’d like to throw out the first pitch at a Staten Island Yankee Game to help draw attention to her platform and continue to raise awareness of Cowden’s Syndrome.

Meghan's friend has been a great support in so many ways.

Meghan’s friend has been a great support in so many ways.

She didn’t hesitate with the “yes,” although she admitted not being too sure of what she had gotten herself into.

Thankfully my very good friend has 4 boys.  And among them they were able to locate some gloves and some baseballs for a few impromptu pitching lessons.  And I have to say they did a good job.

Leaving for the game she had quite a nervous stomach.  Once we arrived she was focused on a “practice pitch.”  Once that was accomplished we had a few moments to take in the magic around us.

60 of our friends and family had taken time out of their lives on a busy Wednesday night to support Meghan, and our need to raise awareness of Rare Diseases.  In addition, it was team night for Meghan’s Swim Team, so there were many of them cheering as well.

When we had first set the date, I wasn’t sure how public to make the event.  I didn’t want to put people out.  So I posted it on my Facebook wall a few times.  I was floored.  And intrigued.  My cousin Kim asked me to order 23 tickets for her.  I didn’t ask too many questions.  My family is big enough that cousins have to trust each other.

We were greeted by Kim, and there were T- Shirts.  It took me a second or two to process.  Then I read it.  Looked around.  Choked back a tear and threw it over my head.

Absolutely touching!

Absolutely touching!

The pitch went off without a hitch, and the announcer crammed so much information into a minute it was amazing.  It’s hard to hear, but trust me!

PRESS THE ARROW…

The night was just fun.  Exactly how summer nights should be.  The weather was perfect.  The company was outstanding.

And, even as the crowd began to dwindle, we sat to watch the game, with the Yankees down 4-1.

And in the bottom of the 8th as it neared 10 PM, Felix and Meghan made a deal.  If the Yankees scored in this half, we could stay till the end.

Four runs later, they pulled off a beautiful “come from behind” win.

And as we walked to the car we stopped at the “Postcards 9/11 Memorial” and we remembered how very lucky we are, even in the midst of chaos.

That first pitch, symbolic of overcoming challenges.  Of conquering fears, and of new beginnings.

That win the Yankees had just pulled seemingly out of thin air, was the result of a refusal to quit.

They worked like a team.  They made it happen together.

A perfect ending to a perfect night.

Here are pictures of SOME of our team.  There are just so many more that support us each and every day.

We LOVE you all.  Thank you for helping us tell the world.  We are …

BEATING COWDENS  together.

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There are not enough photographs, for those at the game, and for those who are ALWAYS with us in out hearts.  There are not enough words to express our gratitude for the love showered on us so regularly.

It is only with your support that we continue to push on.

MUCH LOVE TO ALL!!!

 

Compassion Saves the Day!

Instinct.

I don’t know why I second guess her instinct.  Maybe one day I’ll learn.

We arrived in Manhattan early.  We dropped Mom off so she could get to her appointment.  We parked the car at a better rate than I expected.  We walked a few blocks nice and slow.  And we arrived at our 9 AM appointment by 8:35.  Paperwork completed – we were sent down to the waiting area for MRI.

An empty room, and a few minutes to spare, I stepped into the lady’s room.  No sooner did I get in there than I heard Meghan speak.  “Calling us already?” I wondered.

I joined her in the waiting room and the shell-shocked look on her face was a mix of horror and confusion.

“Mom, I don’t want him to stick me.”

“Relax, you don’t know.  He might be very good.”

“I’m telling you Mom, this is NOT going to go well.”

And, as I tried desperately to calm her rising anxiety, we waited.

We got called back and locked our things in our locker.  The technician sized her up and decided her carefully planned outfit would work and she didn’t need to change.  Then I asked him if I had to remove my jewelry.

“You can not go in.”

Calmly, ” I am sure I can, she has had countless MRIs and I have stood beside her for every one.”

“I will have to ask my boss.  And, we have to see if the braces are OK.”

“But, I told them about the braces when I booked the appointment.”

“Well this is a very strong magnet.”

And with that he led Meghan inside towards the machine and she promptly backed away.

“Mom, my braces!”

To which the technician replied, “You’ll have to reschedule.”

And then the anxiety took hold and my girl began to shake.

“I am very very angry,” I began in my “not so nice” voice.  “You have no idea the amount of planning that went into this, and the amount of worry that has been expended by my daughter.”

“I understand…” he began, in his patronizing, not very helpful voice.

And I honestly don’t recall if he got in another word, because Mamma bear was loose.

mama bear

I can’t even quote myself, because I was that flipped out by this man who dared to tell me he understood.  See,  I can be reasonable.  I really can.  You can tell me you are sorry.  But you can’t tell me you understand.  Because just like I don’t claim to understand anyone else’s life – no one should flippantly tell me they understand.  At least not until they have seen their child through at least 11 surgeries, countless procedures, ridiculous numbers of blood tests, multiple hospitalizations, and countless sub-par phlebotomists.  Not until they have sat awake at night calming their child’s trembling fears by touching them – just so they stop shaking in their sleep.  Not unless they know what its like to have candid conversations about pathology reports and the virtually insurmountable malignancy fears.  Unless they have heard their young girl ask if her children will one day carry this mutation that has caused her so much heartache.  Unless they have heard their 10-year-old consider whether its worth it to have their own children… one day.

See sometime two weeks ago we went for a routine follow-up at the vascular surgeon.  He did a sonogram of the AVM that caused so many years of heartache, and surgery in 2009, 2010, 2011, and has been blissfully quiet since the last surgery there in February 2012.  And he saw some “spongy” spots in there that needed to be looked at.  So we scheduled the MRI, knowing that we “saw this coming.”  The Celebrex had been destroying her stomach and controlling her knee.  The ultimate catch-22.  So the worry was about the MRI, and the needle for the contrast, and the wonder about WHEN, not IF the next knee surgery will be.

And all this was bottled up inside of me and came spewing out at this man who dared to casually tell me he understood what it meant to”reschedule” an MRI that had been deliberately scheduled based on time and location to correspond with a trip to the oncologist, and spare her an unnecessary day wasted at a doctor’s appointment.

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And as I cried for a supervisor, Toni came flipping around the corner.  She sized up the situation, gave Meghan a blanket, sat her down, and told me she was going to fix it. And she did.

I have never in my life seen a supervisor in any capacity who was beyond competent, and extraordinarily compassionate.  She got INTO A TAXI WITH US, and took us across town.  She walked us into the facility, the entire time reassuring Meghan that she had a special nurse who would handle the needle.  I saw the look in Meghan’s eye that said, “That’s what they all say.”

But Toni didn’t lie.  Within minutes of walking into the facility we were greeted by Allison, and Manny.  Both talked to Meghan.  They looked at her arms.  They told her a blind person could catch her vein.  They told her it would be a butterfly.  They told her no IV.  They let her pick who would do the contrast dye and did it in such a reassuring way that she knew neither would feel badly if she picked the other.

MRI Dog (Rocky) always helps too...

MRI Dog (Rocky) always helps too…

Then Michelle and Chad made her feel like an old friend.  They were so warm and comforting.  They positioned her just so, and reassured her in such a way that she took this incredible deep breath.  And when Allison came in to give the contrast dye, Chad held one hand, and I held the arm and she never even felt the needle.  Chaos turned into probably the most successful MRI to date.  Sweet relief.

We had NEVER been in a machine like THIS before!

We had NEVER been in a machine like THIS before!

But we left the facility only for me to realize we were now clear across town without our car.  I held my breath and hailed my first cab. (Put that on the bucket list, and took it off in the same day!)

An hour with the oncologist, always plays with my mind a bit, but there will be time to process her recommendations for vigilant screenings necessary with Cowden’s Syndrome.

We left at almost 1, feeling quite like we had already lived several days.  Then there was this matter of the “Treat Shop” on the upper West Side.  I had planned to go because it was so close to the first MRI site… but not too close to our car.  I walked, she limped by the end, and I am sure I will pay for this for days, but we made it.  A small store full of glorious Gluten Free treats.  And there were 6 dairy and soy free options as well.  Heavenly – and my daughter said, “worth the pain!”

treat house

An afternoon playing with a friend from school, and the sound of girls giggling, made the horrendous morning, and the most unforgiving traffic I have seen in recent memory begin to leave my neck and shoulders.  As the tension began to release I found myself reflective.  Hopeful.  But still unsure.

Watching her at ease on the couch I am reminded not to plan.  I am reminded to trust Meghan’s instincts.  I am enjoying the cool breeze, and for the moment the uncorrected mess.

I am grateful for Toni, and Manny, and Allison, and Chad and Michelle.  If only everyone took their jobs so seriously.  Healthcare, and the world for that matter, would be in a much better place.

Even if just for today they made BEATINGCOWDENS a little easier.

Scars…

There are days I forget.

I forget that it’s not just Meghan, but also me with this rare disease.

As a matter of fact, it’s actually uncommon for me to remember.

Maybe it’s survival.  Maybe it’s maternal instinct.  Maybe it’s denial.  Maybe it’s some combination.

But then there are days that it smacks me right across the face.  And it stings, no, actually it’s more like a scalding burn.

I post mostly about Meghan.  She’s my hero.  She’s my inspiration. She motivates me to be a better person, every day.  But,  if I really want this blog to be transparent, and I really want the truth about our experience living with and beating Cowden’s Syndrome to be out there, sometimes I have to allow my own inner self to be exposed. 

I feel good.  I really do.  Aside from a little lag from my thyroid, I am feeling better and stronger than I have in years.

But there are the scars.  They hide behind my clothes like a little secret.  Cause people forget.  And that’s what I want, because most of the time I forget too.

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But then I look in the mirror, and I see the scars across the implants replacing the diseased breasts removed in the nick of time.  And my shirt doesn’t sit quite right.  And it’s probably my own fault, as I refused the tissue expanders necessary for a proper reconstruction.  I didn’t have the time, or the energy, or the desire, or the stamina to put myself through the frequent fills, the repeated pain, and the additional surgery necessary for the sizes to be equal.  It just wasn’t worth it to disrupt our lives longer.

I saw the plastic surgeon last week.  My two-year follow-up.  Hard to imagine.  She gently reminded me again that she could even things out whenever I was ready.  No cost thanks to the positive pathology for breast cancer, and the genetic mutation.  No monetary cost.  I’m not ready.  Yet.

I saw the breast surgeon last week too.  I see her every 6 months, so she can make sure nothing sinister is growing behind those implants.  The reality and the reminder that as fortunate as I was – I still had breast cancer.   And once you know for sure that those malignant cells had life in your body, you never look at things quite the same.  “No lumps or bumps,” she happily reported.  “See you in 6 months.”

I can’t wait.

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And there are the lymph nodes in my neck.  They were checked last week too.  Sonogram.  As long as they stay stable, we can leave them alone.  “But, if they grow…” she reminds me every time.  Six months for her too.

And my legs.  Fitting into the smallest size they have ever in my life the veins are protruding again.  The PTEN diagnosis, known for enhancing vascular issues, perhaps the explanation for the vascular problems that have caused 2 operating room visits and 5 in office procedures since I was 23.  But, it doesn’t really matter I guess.  The legs start with a familiar heaviness.  Then there is the throbbing.  The last thing I feel before bed, and the first thing I feel after the alarm gets shut down.  And the pulsing – like I can feel the blood moving the wrong way through the broken veins.  And the giant bulging, from groin to ankle, that makes it a little less fun to buy the shorts in a size 2.  I switch to “Bermuda” length and some sundresses.  I wait for the word that GHI has approved another vascular procedure.

Not to mention I saw the GYN Oncologist too.  Everything ramped up a notch with the “Cowden’s Syndrome” label.  There are no “regular” visits anymore.  Even with that benign pathology, it’s a forever commitment to the “Clinical Cancer Center” of the hospital.  Two years since the hysterectomy too.  Time marches on. You can barely see the scars from the laproscopy.  But I know they are there too.  A few inches under the implant scars.  Reminders of the year that changed my life.  Our lives.

The week finished with genetics.  Our geneticist – found by an incidental internet search at the recommendation of our physical therapist, is a gem of a man.  He greeted me with a hug and a smile, and exclaimed that I looked better than I did at my diagnosis.  Then he drew my blood.  More genetic testing.  This time not because of the Cowden’s Syndrome.  This time, it is to fulfill the wishes of my father.  Wrapping up a genetic counseling visit I completed in April, and after consent was received from GHI, the vial of blood was drawn to test for the markers for pancreatic cancer, the killer of my father, and paternal grandfather, as well as about 15 other markers I probably don’t want to know about.  We both said a silent prayer that the test yielded a whole lot of nothing.  We hugged again.  It’ll be about 6 weeks.

So this morning my shirt didn’t fit quite right.  The indentation on the right side was causing the shirt to fit lopsided.  And the vein bulging out of my right leg, especially just above the knee was a little too much for me to take.  I struggled with my tears, trying desperately to hide them from my extraordinarily observant soon- to- be -11 year-old.

This is the reality she knows we share.  Yet, I want so badly to help her maintain some of her youth.  Worry free innocence taken with the words, “You have a mutation on the PTEN gene…” and years of her own surgeries have stripped her of some of the privileges given only to the young.  There is something about 11 surgeries with no real end in sight, that can leave you a bit anxious.

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It only took a minute.  Although it seemed longer.  A hug from my husband.  My ever patient, loving soul mate, who makes me feel beautiful just by the smile in his eyes when we kiss.  And it was time to shake it off.

 

But not without first acknowledging that maybe that was quite a few appointments for a week’s time..

When we got in the car to head to the doctor, the Christian station was playing one of my favorite songs, “Fix My Eyes,” by For King & Country.

There are no coincidences.

And as we sang along, I looked in the rear-view mirror.

“Fix My Eyes”

“Hit rewind
Click delete
Stand face to face with the younger me
All of the mistakes
All of the heartbreak
Here’s what I’d do differently
I’d love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on youI learned the lines and talked the talk (everybody knows that, everybody knows that)
But the road less traveled is hard to walk (everybody knows that, everybody knows)
It takes a soldier
Who knows his orders
To walk the walk I’m supposed to walkAnd love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on you….”

Click the image to hear the song…

We spent Friday looking for sites for a fund-raiser for “Rare Disease Day 2015.”  We met a lovely woman who was surprised we weren’t raising money for us specifically.  We explained that we were grateful.  I feel well enough to work.  We have good medical coverage. There are so many not as fortunate.
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When it gets to be too much, I know to fix my eyes on things far beyond the mirror.  I have a greater purpose right in my own house.  And WE have a greater purpose.

We are BEATINGCOWDENS… together!

Coaches Change Lives

I know that teachers have the power to change lives, but as my girl gets to the middle school years, I am really starting to think the power is with the coaches.

I have always wanted my daughter to be an athlete, and truth be told, THAT didn’t take much convincing.  She is a natural competitor.  She loves the thrill of racing. competing, and performing.  She has done some time in soccer, with some fantastic coaches, who worked to nurture her.  She loved her time dancing.  But, her body, much to her chagrin, was not made for pounding.  The knees, and hips, and major joints couldn’t handle the impact.

So we headed to the pool.  Her first experience with any competitive swimming came at the age of 9, on a CYO team we were connected to through a friend.  Soon after that season she tried out, and was accepted to join a 12 month team.  She began with them in July of 2013.  And, while the desire to compete was always strong in her, it seemed there was constantly something standing in her way.

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We started the year with the goal of making 2-3 practices a week.  But, in the fall things took some wild turns, and there were migraines, and neurologist visits, viruses, and fatigue, and strep, and one obstacle after another.  There were weeks one practice seemed like a feat.  Meghan had a hard time finding her place, because she wasn’t there much.  And the cycle continued.  During the fall my father became ill and passed away quite suddenly in December.  That set her into a bit of a tailspin.  Then in the end of December a routine thyroid appointment told us there was much to be concerned about, and that she’d need her thyroid removed.

coach

Ironically this is about the time she started to enjoy going to practice.  The coaches were intelligent, and compassionate.  The kids were all finding their way.

Meghan responded so well to the two young women who coached her most often.  They understood her medical trials, but treated her no differently.  They pushed her just enough, but never too hard.  They listened when things hurt, and gave her ways to work through it.

She mustered the courage, and stayed healthy enough to make it to her first big meet in January.  She was awed by the whole experience, and truth be told, I don’t even remember what she swam.  Like so many firsts, it was about getting it done.

Thyroid surgery in February sidelined her for a few weeks.  And, long after her body had healed physically, her thyroid hormone levels never seemed to take to the synthetic replacements.  An emergency room trip in February – 10 days post op, led to an overnight stay and the elimination of the synthetic calcium from her diet completely.

But, by the beginning of March she headed back to practice.  Her coaches welcomed her, encouraged her, and built her up.  She started making regular practices, and swimming CYO at the same time.

Then, in May her body quit again.  Severe gastritis landed her in the local hospital for 6 days.  She missed her last CYO meet.  She underwent extensive testing, and the blame for the erosions in the esophagus, and the inflamed, bleeding ulcerations in her stomach lay with the Celebrex – the very medication that was allowing her to function through the chronic pain that plagues her.

Coaches-change-lives

Crossroads.

The elimination of Celebrex, and the discoveries of the damage it had caused in her GI tract, led to changes.  Her already Gluten, Dairy, Soy free diet, became also free of beef, spices, chocolate, and the other tastes that had carried her through.  Then there was the pain.  The constant awareness of pain in all her major joints was playing mind games with her.  The pain – very real – could be fed nothing to control it.  Oral pain meds were, and still are off limits.

Weak from her stay in the hospital, it took another week home before she could even consider a return to practice.  And when she did, she was angry.  She was angry at her body for the pain, and angry that she couldn’t keep her old pace.  She was just angry.

But the coaches, they were supportive.  They let her take the lead.  They let her take her time.  She rested when she needed to. She left early when she had to.  And finally, just about 3 weeks ago she started making full practices again.

The pain is a daily battle.  One she is fighting with mental power to overcome, and the best nutrition we can offer to her.

Last week she made 4 days of swim camp with the varsity swimming head coach at the local college.  6 hours a day.  She slept well.  She was sore.  But she was determined.

So, when we set off for the meet upstate yesterday, my expectations were low.  I was hoping she would finish without disqualifying.  100m of butterfly is not for the faint of heart, especially in a 50 meter pool.  But she did it.  And closed in with a time .67 seconds away from qualifying her for Junior Olympics.  Junior Olympics, the best of the best swimmers in her age group.  An honor just to make it in the door.

We went back today to give it one more try, but it wasn’t meant to be.  This year.

Close doesn’t cut it.  This I know.  Except when you consider that she got THIS close, despite all odds, it’s something to consider.  Meghan’s synthetic thyroid replacement is not working.  It’s just not.  At our last appointment we found out her TSH level – the Thyroid Stimulating hormone has increased by over 300% in 6 weeks.  Post operatively it remained about a 10, it took a brief dip to 6, and then over a 6 week span increased to 20.5.  ABNORMALLY HIGH is what it says on the lab report.  That, combined with her low levels of T4 means that the work of the thyroid, that can not be done by the gland that was removed, is not being done by the medication, which has just short of doubled since February.  The endocrinologist is baffled.  I’m concerned, but not shocked.  He agreed to research alternative medication, but he has, “never had to prescribe one before.”  For those of you not thyroid patients, you are considered hypothyroid, once the TSH goes above 5.  Most people feel human between 1 and 3.  I function best when mine is .5.  At 20.5 you would likely not find me out of my bed.  You would certainly not find me at swim practice.

“Mind over matter,” we say.

“Everyone has something,” we say.

“Show the world you are better than Cowden’s Syndrome,” we say.

And she does.  All the time.

On the way home we talked a lot.  We talked about obstacles, and overcoming.  She started to set goals.

swim_coach_journal

And then, there was this text from her coaches.

“”Hi Mrs. Ortega.  (We) just wanted to send you guys a text and let you know how proud we are of Meghan.  She is such a pleasure to coach and is always looking for ways to improve and be her best.  Swimming isn’t only about the times, it’s about the people and having the opportunity to create and share memories, good and bad.  Meghan has so much drive, and goes through more than we can even imagine.  She is truly amazing to go through everything she does and still push her body in the water.  Today was just the first time.  We know there will be plenty more opportunities for her to make cut times, and we know she will.  She has limitless potential and we want her to know that.  She is truly an amazing person, and we are lucky to be able to coach her.”

inspired-life

And in that moment, everything was OK.  Coaches have this incredible power.  They can motivate and heal and push in the same breath.  They are gifted with selflessness like no other.  My heart is grateful for these women who will continue to shape my daughter’s future.  May they always know the impact they are having on a life full of bumps, twists, and turns.

Champions of HOPE

It’s no secret that we have been followers of “The Global Genes Project” since our diagnosis in 2011.  Meghan fell in love immediately with the denim ribbon, and their slogan, “HOPE it’s in our Genes!”  That play on words stuck with her, and the ribbon gave her a good deal of connection at a time when we weren’t sure if we’d ever connect with another soul with “Cowden’s Syndrome.”  The connection with the RARE Community at large carried us through those earliest days.

hope-its-in-our-genes-300x88

The end of 2011 and well, 2012, and… well, you get the idea… held some tumultuous times for our family.

Adjusting to the diagnosis was not easy.  Finding balance within the labels, and the risks, and the screenings, and the surgeries, and the appointments was (and sometimes still is) a struggle.  In the months when the diagnosis was at its newest, Meghan’s thyroid was called into question several times.  We discovered nodules we never knew were there and learned the early risks of thyroid cancer were real, and ever-present.

She soon underwent the most horrendous of what would be 4 thyroid biopsies over the next 2 years.  Scarred physically and emotionally, we began to wonder about this beast we were up against.

In February of 2012 Meghan had her 4th knee surgery for an AVM (arteriovenous malformation) in her right knee.  Now convinced it’s stubborness could be credited to Cowden’s Syndrome, the fight to control it’s growth took on a whole new meaning, and we were referred for consultation to Boston Children’s Hospital.

While we balanced the screenings for Meghan, I was sent to my own set of initial screenings.  Being 38 and newly diagnosed, I was in the battle full on, and I had had no idea.  All the imminent cancer risks associated with Cowden’s Syndrome – except for the thyroid which often comes earlier – seem to peak right around 40.  No stranger to doctors, I was trying to figure out how the diagnosis helped explain the roadmap that was my own medical history.

In March of 2012, I underwent what was to be a “prophylactic bilateral mastectomy,” to battle the 85% breast cancer risk I had with the PTEN mutation that caused Cowden’s Syndrome, and my own medical history which had already seen 7 increasingly suspicious breast biopsies.  Seven days later, while having my drains removed, my husband and daughter sat in the room as the doctor announce it was a “good thing we moved when we did.”  My left breast, the one that had never seen a scalpel, had 1 centimeter of DCIS, close to the nipple and clear of the chest wall.  I had breast cancer.  They found it by accident.  My aggressive, intelligent surgeon, who I met because of my diagnosis, and really BECAUSE of my daughter had saved my life.  I needed no treatment.

faith_hope_breast_cancer_puzzle

I left the room that day holding the two people I love more than anything.  Unaware of the plans clearly in place for us, I was so filled with gratitude, and so in awe of the reality that if I had never had Meghan, I would have likely never known.  And the surgeon’s words, “If we had waited till July like you had wanted, you would have been in a fight for your life,” still ring in my ears.  Sometimes you have to stop the “what ifs?” and just say “thank you.”

Ten weeks later I was back in the hospital for a complete hysterectomy.  A suspicious uterine polyp, enlarged ovaries, and Cowden’s Syndrome combined again for too great of a risk, and the recommendation was for surgery and quickly.

happy hysterecomy

The shock on my body, the trauma to my family at this point was intense.

I had begun to scour the internet looking for places to go.  I found http://www.PTENworld.com and its dynamic young moderator, a Cowden’s patient for many years.  I found Facebook, and a beautiful support network there.  I found a yahoo group, and a mom there who has consistently gone above and beyond for me, simply out of goodness. Finally, there were real people I could talk to.

One day that Spring I received a Pandora necklace with a pink ribbons on it.  After years of advocating for my mother, a bilateral breast cancer survivor, holding the pink ribbons that belonged to me felt strange.  Yet, so did the new boobs, smaller, but perkier than the old ones, and all the clothes I was learning no longer would fit quite right.  So, I took comfort in that necklace and I wore it a lot.

pink ribbon pandora

And one day my very obsevant girl, who was 8 at the time, a few months shy of 9, asked me “What stands for me?  The gold ribbon is for childhood cancer, the pink ribbon is for breast cancer, the puzzle piece is for autism.  What about me?  What about people like me who are dealing with this (Rare disease) every day?  I NEED something mom.  Not to have a thing, but for my identity.”

Stunned, as usual.  I realized I had begun to heal myself, to seek comfort for myself, but I was leaving her behind.

So I happened to be retelling the story at lunch.  And my teacher friend, whose husband is a jeweler, and who has a son with autism, really “got it” on so many levels.  She told me she’d talk to her husband and see what was around.  So I gave her a denim ribbon sticker from the Global Genes Project, and they were on a hunt.  Which turned up nothing.  There seemed to be no piece of jewelry worldwide to symbolize those with Rare Genetic Disorders.  And, with there being over 7,000 RARE dieseases, accounting for almost 10% of the population, to us this was silly.

So my friend’s husband offered to make one.  For Meghan.  Because if she wanted a piece for her “identity” she should have one.  So he did.  It took months.  And it was perfect.  Absolutely perfect.  And he was so generous in the donation of his time, all to light up my girl’s world.

 

August 2012

August 2012

 

Typical Meghan, no less that 5 minutes after she put it on, she started with, “Wouldn’t it be great Mom, if these were available all over the world, and then we could see them when we went places, and we would know the people who have, or love people with RARE diseases?’  And the conversation continued to include asking me to reach out to The Global Genes Project to try and make it a reality.

Well two years have gone by.  Felix and I each wear one too.  Only 3 ever made.  Until recently.

There have been lots of EMails exchanged.  Lots of conversations.  Lots of people.  Ultimately they did decide to have the necklace made, and while the decision thrilled me, I would be lying if I said that I wasn’t disappointed that they couldn’t use our friend, the jeweler.  But, business decisions are what they are, and this one was not in my control.  And, despite that disappointment, Meghan’s dream, her vision, is becoming reality.  We received 2 samples this week, and a “THANK YOU” from the team at Global Genes!  The necklaces will be on sale through http://www.globalgenes.org in the fall!

denim ribbon necklace 1

denim ribbon necklace 2

Two years have gone by.

I have developed deeper, closer “long distance” relationships with some “kindred spirits” in the Cowden’s Community – globally!

My girl has some of her own friends with Cowden’s now, spread across the world.  She will be 11 soon, and is quite the young lady.  She understands life on levels deeper than she should.  Most impressively she understands that despite our struggles, there are many in the world who struggle in heart, mind, body, and soul.  She knows that “Everyone has SOMETHING!”

This past year she organized an assembly at our school.  She worked with Student Council to arrange an evening fund raiser.  She partnered with a friend in her own class who has a RARE Disease.  We sold T-Shirts.  We received intense support from faculty, and parents and students.  Every child got a denim ribbon to wear for RARE Disease Day.  We sent thousands of dollars to The Global Genes Project.

She has already begun to plan for next year, and wants a much bigger fund raiser.  “At a place Mom.”  We can really get the word out and raise money.  For The Global Genes Project http://globalgenes.org/, and for the newly founded PTEN Hamartoma Tumor Syndrome Foundation http://www.ptenfoundation.org/, another organization close to our hearts.

She has a mind that never stops.  She has the heart and voice of an advocate.  And this year, she was nominated for the TEEN Advocacy Award at The Global Genes Project.  (If you scroll down, the teens are close to the bottom.)

http://globalgenes.org/2014-rare-champions-of-hope-nominees/

Meghan 2014 Nominee

Meghan 2014 Nominee

Champions of HOPE indeed.  So proud of her.  So proud to see her name with all the others who have decided to “Do Something.”

 

“HOPE it’s in our Genes!”

We are BEATINGCOWDENS!

One of a kind…

beatingcowdens:

In light of the events of this week, I wanted to reblog this so my next set of thoughts will make sense!

Originally posted on beatingcowdens:

It probably started in the spring.  Meghan’s class had been working on a fundraiser for Alex’s Lemonade Stand. (alexslemonade.org)  The entire third grade was raising money for childhood cancer, and she took her fundraising work very seriously.

Meghan decided to make a bookmark, with a picture of my cousin Meghan – Angel Meghan as we speak of her – who died from Leukemia in 1991.  She wanted to make her connection to the fundraising personal.  As we prepared baskets of bookmarks to leave with people we knew, Meghan decided we should sell ribbons too.

So, I asked her what color?  She wasn’t sure what I meant, but I really didn’t know if there was a color ribbon for childhood cancer.  So, she took out her iPad and a quick search found us gold.  The gold ribbon was the color for childhood cancer.

 So we headed to Michael’s and…

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