The Best You Can…

Friday we met a good doctor.  A new endocrinologist.  He is young.  He is friendly.  He is smart.  He is ready to be a doctor to Meghan.  I am grateful.

Friday Mom got her second cataract done and checked before the storm.  So necessary for more than visual acuity.  It just needed to be done.  I am thankful.

I was about to say today was one of those days where you have to focus on your perspective, and it will define your outcome.  But, really that’s every day, isn’t it?

We woke up under about 30 inches of snow here in NYC.  Now the thing about living in NYC is that you have to learn, as the Marines say, to “Improvise, Adapt, and Overcome.”  Because nothing really stops.  At least not for long.

improvise adapt overcome

Yesterday there were travel bans.  Yesterday we were to stay off the roads.  Today we are told that the City’s 1 million school children will report to school tomorrow, and with them, their thousands of teachers and support staff will report as well.

In many boroughs this is not such a big deal.  Public transportation is at the ready.  Moving around is easy.

Not the case here on Staten Island.  Almost everyone travels by car.

Yesterday Felix tried to keep on top of the snow.  It was fruitless.

Last night an ambulance got stuck in front of my house.  My husband and a neighbor dug them back to a main road.  We said a prayer for the person they were headed to, and continued on our night.


This morning, we woke early got the shovels and the snowblower.  He started at one end, and I at the other.  But in the front of the house I was met by my neighbors.  We groaned a bit, and pleasant conversation ensued as we gave each other a hand.

At one point the conversation turned to Meghan’s footwear.  Somehow.  And as I explained that she has 2 different sized feet, and we buy 2 different shoes and toss the opposites, she seemed stunned.  And I said soon after we toss the opposites we sit for a moment in gratitude for 2 working feet, and a financial situation that allows us to pay our credit card bills.  She smiled.  She gets it.  She’s had life struggles of her own.

We got the cars free.  We set ourselves up to hope for the best for tomorrow.

Then Felix headed with Ken to shovel out my grandparents.

Grandma, when memory came easier to her, used to sing, ” Count your many blessings, count them one by one…”

Grandma is 95 and Pop is 96.  Life is more challenging for them than it ever was before.  Yet there are so many blessings.  They have neighbors that help clear pathways when we can’t get to them.  They have a tenant who is a friend, who looks in on them and keeps us posted.  They are really special, and we are grateful for the kindness of those they interface with daily.

When he got home, my husband stole a quick meal and headed out to make an igloo and a snowman with Meghan, after a romp in the snow with the dogs.  He is a good husband, and a good Dad.  A really good man.
   
Some time this afternoon my phone rang.  It was an internet friend looking for some reassurance.  I think I was able to give it.  Keep your heart and mind focused.  Stay physically, mentally, and spiritually healthy.  Do the best you can with what you have, where you are.  Always.

Tomorrow Meghan will see the knee surgeon.  Time to follow-up on a less than stellar MRI/MRA experience the week before last.  Time to check on the status of the AVM.  Holding my breath that it’s behaving.  Tomorrow I will hope all the main roads from here to NYC are plowed well, and I will gratefully pay to park in an overpriced lot.  Perspective.

We are actively engaged in “Jeans for Rare Genes 2,”  working on everything from ticket sales to journal ads to raffles.  My Meghan is ready to channel this week’s pain into a focused goal.  Meghan wants the PTEN foundation to have the money they need to create a patient database.  Vision.

JFRGflyer7

Every day we are given a choice.  Many choices.  Life is not all peaches and cream.  Not for any of us.  Some days I struggle.  Most days I know which side of the bus the sit on.

everyday-u-make-a-choice1

Here’s to hoping for an easy safe parking spot at work tomorrow, a mind eased from the worry of loved ones, and a smooth trip to NYC.

 

Local Newspaper Coverage

This is already all over for my local friends, but for anyone else who is interested, this article was written for our local newspaper. It will publish in print Monday, but is in the online paper today. Click the link below.

http://blog.silive.com/gracelyns_chronicles/2016/01/post_23.html#incart_river_mobile_home

 

JFRGflyer7

Unsung Hero

There is a hero in this war on Cowden’s Syndrome, this draining task of “beatingcowdens” that we undertake each day.  He doesn’t get much attention, and he prefers it that way.  Yet, I shudder to think where we would be in this war without our strongest soldier.

He never could have known almost 16 years ago what he was getting himself into.  Yet, somehow every day I feel the strength and power of his love.

Lori & Felix Wedding

We stood in front of God, and our family and friends on that chilly April day in 2000, and he promised to love me, “for better or for worse, in sickness and in health…”  And he surely has been true to his word.

I am not to sit here and say, “life is perfect,” or “we never disagree.”  Because I would be lying, and frankly that would be boring.

But, we work together.  We swallow pride when it’s necessary.  We say I’m sorry.  We forgive.

never alone

And, what I can say, is there is not a chance Meghan and I could spend our days “beatingcowdens” without him.

Most often he is not physically with us.  He works later than I do.  I pick up the afternoon appointments, local or in NYC.  I drive to swim practice.  I wait there and drive home.  I am gone hours and hours every day.

We communicate via text a lot.  I type a paragraph, he answers in a word or two.

Yet there is this sense of companionship we share from afar.  While he can not be with us at all the appointments, or the practices, or the general running around the days take us on, he is home, with us in mind.

I can not tell you how often we walk into a house full of the smell of a freshly cooked meal.  It’s not unusual for me to find a bed full of clean and folded laundry.  The dogs are cared for.  The candles burn all winter when the house is closed and stale.  The floor is clean.  Little is left out and around because he knows my compulsions and respects them enough to help me when I’m not home enough to help myself.

love

None of these tasks are trite.  They are what provides me with the momentary glimpses of sanity I so desperately need.

He is patient when we talk about fundraising.  When the whole month of January, and part of February will be consumed with “Jeans for Rare Genes 2” because Meghan wanted to DO something.  He works, behind the scenes, ever-so-quietly to spread the word, raise awareness and get things started.

He backs up technology and sits through software updates.

He updates, paints, and fixes just about everything.  And he really HATES painting.

He is a father above and beyond all things.  He loves our girl so completely she still holds his heart in her hands.  He is her way to unwind from her tightly wound Mom.  He is her chef.  He knows how to tease her until she laughs, and how to hold her most precious needs close to his heart.

And when the night rolls around, and the weight of the day presses heavy on my heart, he has the right balance of knowing when to hug me, and when to make me laugh.  My worries transcend even Cowden’s Syndrome, and the list of prayers grows deeper every day for those we love who fight more than their share of battles.  He knows just what I need.  All the time.

Cowden’s Syndrome permeates every day of our lives.  It’s reality.  It is 5 surgeries for Meghan in a little over a year.  It is 70 minutes on the ultrasound table for me this weekend, hoping, praying that I had the most thorough tech ever, and she didn’t actually FIND anything.  It is next steps, and strategies, and switching doctors, and making decisions, tough decisions.

The saying goes that if we all tossed our problems into a pile, we’d take our own right back.  I would… if and only if I could continue to run through life with my husband and my daughter by my side.

Here’s to the unsung heroes in all of our lives… for the STRENGTH and COURAGE they provide.  Give them a call, or a text, or a hug.

Love-Gives-Strength-and-Courage

Relax, Nothing is Under (My) Control

Today I  dropped my daughter’s iPad.  Down a flight of stairs.  With no case.  I’ve never seen quite so many pieces on a screen.  But, it still turns on.  And somehow we all managed to remain calm.  My husband set the appointment at Apple for Weds. night.  Yes, we have “Apple Protect.”  Yes, I know there may be a deductible.  And, while I called myself several names, I was most impressed that all three of us remained very calm.

Maybe we are learning.

Relax

NOTHING is under control really, except how you handle the things that are out of control.

Yesterday I had the dog to the vet.  In a little under a year since we rescued her, she has ballooned from 42 pounds to 65.  I guess she feels content in my house.  We must be doing something right.  There was this rash on her belly.  And $300 later, with a shot of antibiotics, some antihistamines, and this cone on her head – it’ll be ok.

April cone

Except in the middle of the night.  Then she needs her Mom to love her cause she can’t get comfortable.  But, hey, really sleep is overrated.

On Thursday we went to see the ENT.  He checks Meghan periodically since the hospitalization 18  months ago to gauge how her reflux is affecting her throat.  It was a bit redder than usual this time.  So, we juggled a few medicines and left with directions to find a GI.  Easier said than done.  Our last one was fantastic, but she took a break from practicing, and our local options are less than fantastic.  So we will seek, and hopefully find…

On Wednesday we had the 2 week follow-up from the biopsy.  We left with a script for progesterone which is apparently our only option.  It’s necessary to slow the growth of those precancerous cells, and hopefully get them to go away.  Verified with the head PTEN researcher in Cleveland, through my local geneticist.  I hate hormones.   Hopefully she tolerates it.  Hopefully the cells behave themselves.  Three month follow-up, then we schedule the next biopsy.  She needs another biopsy so we can have a “clean” one.  That’ll be in June.  Something to look forward to.

On Wednesday after the doctor, Meghan and I took the train from downtown to Times Square to see Daddy at work.  This is truly one of the highlights of her year and there was no way we were missing it!

NYE ball 2016

Favorite Family Picture! Wearing our "NEVER GIVE UP!" thegsf.org

Favorite Family Picture!
Wearing our “NEVER GIVE UP!” thegsf.org

On Tuesday we stayed home.  She missed play practice.  She was recovering.

Monday had started out full of energy – with a huge nail in my new tire.  Thankfully the car has warning lights to tell me when the pressure is low, and thankfully I got up early, because soon after I got home from getting it fixed, she woke up.  In pain.  We ended up spending Monday in the Emergency room at NYU.  All told about 8 hours, a CT scan, a chest X-ray and blood tests, they found an elevated WBC, and free-floating abdominal fluid.  The doctor said it’s likely a cyst burst.  She was vomiting so badly that morning I never knew WHAT had hit her.  Just something hard.  The fluid, in my very sensitive to her body, girl, was likely causing the severe pain – just being there.

 

One LAST IV for 2015

One LAST IV for 2015!

Maybe it was triggered by Sunday’s Swim Practice at the Long Course (50M) pool on Long Island.  Maybe not.  We’ll never know.

Christmas seems like only a blur.  Mom had it this year, a kind respite for me.  Some time spent with the family.  Some time to just be together.  It was perfect.  And I am so grateful.

 

My Family 2015

My Family 2015

My Sisters 2015

My Sisters 2015

Meghan with her Great-Grandparents 2015

Meghan with her Great-Grandparents 2015

The week has been wild, and I guess that’s why I’ve been quiet.  But, I am proud to say we have laughed despite the chaos.  I can’t think of a day this week I haven’t laughed so hard I cried.

NOTHING is under control.  At least not under MY control.  And I am going to TRY really hard to be more OK with that.

The schedule for 2016 will not lighten up even a bit.  I have an ultrasound Saturday, Meghan has an MRI on the 14th and the knee doctor on the 25th.  It will not slow down.  I must stay organized, and healthy, and focused.  I must continue to eat well and exercise.

Most importantly I must laugh.  Often.  With my family.  With my friends.  The adventures will continue.  But

IMG_5580

Happy New Year to all!

NYE ball 2016c

 

It’s Complicated…

complicated

I just ended a 30 minute conversation with Meghan’s adolescent gynecologist.  The fact that she spends 30 minutes on the phone with me speaks to a rare spark of passion for her field, and a genuine desire to help.  These are things we clutch because they are uncommon, and, when they come at all, they are fleeting.

The long and the short of the pathology, which arrived earlier than planned, was that there was no malignant finding.  Yes, you read that right.  No malignant finding. (Insert Happy Dance here…)

happy dance

And the gratitude for the prayers and positive energy was lifted up.  We truly are always aware of the potential alternatives, regardless of our situation.

But, as is always the case with Meghan, I encourage you to keep reading.  Nothing is ever really simple.  And, as the years go by it seems to get progressively more complicated.

While in fact there was no malignant finding, there was not a purely benign pathology either.  She had “the best type of hyperplasia you’d want to find.”

Except when pressed, the gynecologist admitted that there is no type of hyperplasia that you’d ever want to find in a 12-year-old, and that there should be nothing but normal cells there.

Hmmm.  Hyperplasia. Medicine.net says…. “Hyperplasia: An increase in the number of normal cells in a tissue or an organ. Hyperplasia can represent a precancerous condition.”  And various other sites say the same.  The doctor agreed.  The pathology finding was not “normal,” and therefore it must be treated.

See, hyperplasia, specifically endometrial hyperplasia might be detected in women 3-4 times her age.  It might even be expected in women 5 or 6 times her age.  But, her age is 12.  And none of this is ok.

think_outside_the_box

I pushed her about thinking outside the box, and she reminded me that the entire biopsy WAS thinking outside the box.  Any other teen would have been treated for months or more on hormones.  That could have had epic consequences.

In the short-haul, she gets to heal from an invasive procedure.  In the next week more hormones will be introduced to her body in an attempt to keep the hyperplasia at bay, and most importantly to keep it from progressing.  But, hormones, although commonly used to regulate bleeding, require special care in the case of a young lady with no thyroid, a difficult time balancing the endocrine hormones, an extremely elevated risk of uterine and breast cancer, thanks to the PTEN mutation, AND TWO first degree relatives, with estrogen fed breast cancer.

For now, she keeps her uterus.  And we hold our breath.  We hope that over the next few months things will start to calm down.  And some time in the next 6 months the invasive biopsy will be repeated over again to make sure the hyperplasia is gone or behaving itself.

repetition

To Meghan this mimics the process that took place at the beginning of the end of thyroid removal.  We had about 3 years of progressive biopsies before they decided to pull the plug and take it out.  She knows, and agrees, that we will all fight longer and harder for her uterus.  For so many reasons.  But the similarities can’t be overlooked.  Nor can the distressing notion that another body part is misbehaving.

When we were diagnosed in 2011 we were told there would be screenings and monitoring.  We even figured on a few doctors every 6 months.  At one point we dreamed of getting them all into a week in August and a week in February and living a somewhat normal life the rest of the year.

Instead, in Meghan’s life alone there have been 5 surgical procedures in the last 13 months.  Digest that for a minute, because it’s hard to keep track of.

Currently we are monitoring her thyroid levels through blood every 6-8 weeks, visits twice a year, and annual ultrasound to monitor potential regrowth.

We are monitoring her knee where the AVM resides, through twice a year visits to the interventional radiologist and twice a year visits to the orthopedist.  There is an annual MRI.  And two of those procedures in the last 13 months have been for the knee.  Add in surgical follow-up visits, and Physical Therapy.

The dermatologist needs to see her twice a year.  Not because anything has been found on her, but because in addition to me passing the PTEN gene to her, apparently her father and I BOTH have Dysplastic Nevus, a “precancerous” condition where moles have a tendency to become malignant.  Couple that with the almost 10 % melanoma risk Cowden’s patients carry, and in addition to the sunscreen, there are necessary scannings.

There is the gastroenterologist, who became necessary almost two years ago when the use of Celebrex to control the knee AVM started to rot out the GI tract.

And the ENT who was added so he could monitor the larynx to avoid unnecessary endoscopy but gauge improvement from the scary state she was in in May of 2014.

Oh, and the doctor who prescribes the digestive enzymes because they work, and no one else will.

And the pediatrician who doesn’t like to go more than 3 weeks without examining Meghan, who also keeps her on Acyclovir, prophylactically for chronic HSV that recurs on her face.

And, don’t forget the hand surgeon, who we love, (who doesn’t have a hand surgeon on the team?)  who has twice in 3 years removed vascular lesions, one from each palm.  And those surgical follow ups.

vomit emoji

Nothing is neat and clean.  Nothing is contained.  Nothing ever fit into those 2 weeks we once dreamed about.  This disease has projectile vomited all over our lives.  And it’s everywhere.  And it’s messy and gross, and we just want to take a hot shower and move on.

Because we haven’t even discussed fitting in MY appointments…

And a full-time job….

And an honor student….

Who is a swimmer….

And a theater buff….

And a community activist in the making…

All after work, and school, into the city, in traffic, and expensive parking lots, in hopes of getting back local in time for practice.

Last week I told Meghan over the Christmas Vacation we would need to see her gyn, and do her knee MRI, and my abdominal sonogram.  She was less than impressed.  The general sentiment is that we don’t get vacations, we get days off from school to go to the doctor.  I can’t argue.

overscheduled

The physical, mental, and social ramifications of this under-funded, “orphan disease” are having a profound effect on the life of my girl, and her mom and dad too.

That is one of the main reasons we work so hard to raise funds and awareness.  Maybe one day…

So tonight, we are grateful.  We are on our knees in gratitude, for the prayers that were lifted on her behalf.  We are thrilled to hear the words, “It’s not malignant,” but we are painfully aware the journey of monitoring another body part has just begun.

So if we are not shouting from the rooftops, please don’t think us ungrateful.  We are not.  We are relieved.  We took our first deep breath in weeks.  But, we did ask Santa for some new body armor, polished and ready for the new challenges PTEN Hamartoma Tumor Syndrome, (Cowden’s Syndrome) are actively placing in our way.

We ask that you continue your prayers, and continue to educate yourself about genetic cancers, orphan diseases and people like us, left to be our own advocates, in a world that isn’t overly concerned with how our story shakes out.

While we are in transit, to and from a lot of places we’d rather not be, we talk a lot.  Most of it is complicated.  But some of it, is quite simply about how a 12-year-old with a vision is going to change the world.

life goes on

 

Come join us on FEBRUARY 21st as we try to draw attention to Rare and Genetic Diseases! Beating Cowden’s Fundraiser LINK – PLEASE HELP US SPREAD THE WORD!

Time with "BOB" our favorite entertainer...

Time with “BOB” our favorite entertainer…

Overwhelmed

Someone tried to steal my credit card today.  Online purchase of almost $1000.  We are pros at this.  Text alert.  Call to Chase.  Charge suspended. Crisis averted.  We are pros at being hacked.  One day I’ll figure out why.  Right now I don’t have time.  I’ll be busy calling E-Zpass, and all the other automatic charges on our only real credit card.  Whatever.  I have to laugh.  Cause if I don’t I might cry.  And that would cause a headache and be counter-productive.

I have serious attention issues.  Probably because everything I touch seems to morph into a few more things to address.  More phone calls, more emails, more papers, more appointments.

stubbronness

My life is not that bad.  Truly.  I know I’m in good company.  Chaos abounds and if you don’t appreciate some of it, you’ll regret missing it.  But, the thought that someone would want to BE me makes me laugh a bit.  Or maybe they just think I’d be too busy to notice…

Yesterday Meghan was scheduled for a biopsy at 3:30 PM.  That is a rotten time for any surgical procedure.  It involves a full day of fasting, anxiety and the like.  We arrived at 2:30 and got checked in.  Then we waited.  And at 6PM when I finally walked with her to the OR she was dizzy and light headed from nerves and a day of not eating.  Hours delayed.  Cause, why not?

reason for everything

It sucks that my 12-year-old knows what a biopsy is.  It really, super sucks that she has had so many.  It’s helpful that they’ve all been negative so far, but the notion that “luck” will run out at some point looms.  She knows all about pathology and wonders if it will be back before Christmas.  I am often struck by the notion that all of this is unfair.  But, I have always hated the people, young and old, that whine about things that are “not fair.”  The struggle not to become THAT person is real.

help

I write to bring back my focus.  I write to get the thoughts swirling around in my head back into good order.  I write because it makes it less awkward for the people who actually want to hear about our lives, but don’t know what to say.  Some days the task of organizing these thoughts is much easier than others.

We are at a point that our lives are overwhelming.  I don’t just mean busy, like in a typical, school, activities, homework, sports, etc. kind of overwhelming.  I mean they are overwhelming in the medical sense.  We are past the point where we can even really talk to most people about what’s going on.  I get to kid around a little when I talk about needing my spleen tumors scanned again, or my implant lifted, but it’s hard to share the true tears of frustration I feel that I will have to do that with a new surgeon because mine sold her practice and is now out of network.  I keep the tears I cried about that tucked away.

In fairness, what do you say when you are discussing the umpteenth medical procedure of your 12-year-old, when most adults you know have only had one or two surgeries or procedures in their lives?

How could I expect someone to even respond?

How do you explain that we have “operating room routines?”

What can you say to soothe the lonely pain of recovery.  Again?

Nothing silences a conversation faster than a discussion about the uterine biopsy of your 12-year-old daughter.

Nothing silences her cell phone faster than trying to just share a little of that enormity.

path destination

Truth is, we know.  We know we are loved.  We know we are thought of, and virtually hugged, and prayed for.  We know.

But, when so much of your life is swallowed up in medical procedures that you really can’t talk about – it gets lonely.

She’ll need another day on the couch.  To recover fully.  Her Dad will stay home tomorrow.  They will watch some TV, and talk without speaking.  They are good at it.

And Monday, she’ll head back to school, awkwardly searching for the fine line of politely ignoring the enormity of her life, and sharing just a little with those who are brave enough to ask.

Please don’t take any of this the wrong way.  We appreciate the love, and texts, and Facebook messages, and Emails.  We love all of you.  And we are sure we’ve missed some key things in your lives too.

elephant and dog sit under the rain

It’s just, well, the reality of this Cowden’s Syndrome, the enormity of the 5 surgeries in a bit over a year, the gut wrenching notion that it won’t quit – ever, the frustrating planning of two scans and a doctor’s appointment already eating up the next “vacation,” the waiting for the pathology report for the polyps that just don’t belong in the uterus of a 12-year-old, well, honestly… It’s just overwhelming.

I think that’s the word that describes my thoughts best.  Overwhelmed.

Now that I’ve got that organized, I’ll get back to the business of

BEATINGCOWDENS!

The Patient or The Person?

Right-Decision-Wrong-Decision

I am sure I am not the only one, especially the only parent, who struggles daily with wondering if I have made the best choices for my daughter.

Sometimes we argue, and bicker, and I find myself wondering if I am reaching her.  Other times I look at all her activities and wonder if she is too busy.  Still other times, I look at her and I see those tired eyes, and I wonder what I can do to make things better.

Choices.  Life is about choices.  And around 12 years old is that transitional time where more and more of the choices become hers, not mine.  I can guide, and support, but she is beginning to make more of her own choices, and handle their consequences, be they positive, or not.

She is doing a great job,  and truly despite a few hiccups, I could not be more proud.  But I will always worry.

Question-Mark-Cloud

The one area though, where the decisions are mine and her father’s to make, are the complex medical decisions.  And with Meghan there are many.  I have to wrestle with my roles, advocating for her best interests physically, mentally, and emotionally.

This has been a growing process for me, and there has been such a learning curve.  With Meghan there is always a medical decision, always a worry, always something that has to be checked out and looked at.  Many of these things have potentially serious consequences.  But, she is not a medical specimen, with a fascinating genetic disorder.  She is a child, a young lady, with hopes, dreams, goals, and emotions.  Finding the balance between who she is and what she needs is tenuous.

Sometimes I get it wrong.

This time, I got it right.

The doctors are worried.  She needs a biopsy.  But, it’s not her first biopsy, and it won’t be her last.  There is reason for concern, and we take that concern very seriously.  The biopsy was to take place on the 9th of December, the first available.  It would keep her from swimming for about 10 days.

right decision

She looked at me.  I knew in my gut what to do.

No, you’ll have to book her for the 16th.  (Even knowing the extra week of waiting would be agonizing for me.)

The doctor looked puzzled.  But…

Listen, she has her drama concert on the 10th, and her swim meet on the 12th and 13th.  She’s primed and ready to qualify for a championship meet.  One week is not going to change that biopsy.  You and I both know, it is already whatever it is.

She looked at me.  She looked at Meghan.

My eyes locked with my girl.  In those eyes she thanked me for putting her the person, before her the patient.

Thursday there was this…

Saturday, there was this…

And before the meet was over she had personal best times in 4 out of 5 events, and 2 qualifying times for Silver Championships.

We have no idea what Wednesday and the ensuing week waiting for pathology will bring.

But, there is a peace in knowing the person is always more important than the patient.

Mother-Quotes-45

I Found the Christmas Spirit, at the Grocery Store

She could have ignored the tears in my eyes. She could have beeen annoyed by my lack of focus. Undoubtedly she was tired. It was Friday night, and after 8. I would never see her again. It would have been so easy to look past my face, and my shaky mannerisms, and rush my order through.

But, she made eye contact. And, she asked me if I was ok. And, she meant it.

Although every rehearsed part of me wanted to recite the appropriate line, the one that says, “Yes, I’m fine thank you…” I just couldn’t get my mouth to form the words.

A sigle tear fell down my cheek. And then another. I was in the grocery store. A ritual every third Friday, miles from home. By sheer grace alone no one was behind me.

As the words came tumbing out she made eye contact. She showed compassion. As I rambled about the doctor who had just called me, on my cell phone, after 7 on a Friday night, and the raw fear I felt for my 12 year old, she listened. At the grocery store.

A quick summary of 12 years of ill health and yet a bright, beautiful young daughter who defies all the odds. A few words about the 4 years since diagnosis with a rare, genetic mutation that causes benign and malignant tumors. A brief sentence about the constant battle to keep the malignancies at bay. The terrifying, bone crushing fear that we might be losing.

She bagged my cart. She found my shopper’s card. She reminded me where to sign for my credit card.

And then she did something that I will never forget.

She called her manager. And at first I didn’t understand. Then, she said, “I’ll walk you to your car.” It was cold. Almost raining. She didn’t flinch.

She told me about her own experiences with missed and bumbled diagnoses. She told me she hoped my daughter would be ok. And she meant it.

Somehow I got home that night. The nightmare still continues. But, this woman….

In this busy holiday season, where we sometimes forget what really matters, she cared. At the exact moment when I needed someone to care, and I was surrounded by complete strangers, she cared.

I don’t even know her name. But, she reminded me about Christmas spirit. She reminded me that people care. She showed compassion to a stranger.

She has no idea how much she did for me.

She sent me right home to hold the one who matters most.

This kid.  My stength.  My motivation.  My hero.

This kid. My stength. My motivation. My hero.

Dear Stress, Let’s Break Up…


Because truly I’m getting bored of you. I’d like try to spend some time with Serenity, or Sanity, or Relaxation, or maybe Peace.

I know I’m bad at ending relationships. I get attached even to things that are just wrong for me.

I make excuses. I have a hard time letting go.

And you, well you are relentless. You keep finding ways to get in my face.


Yesterday you played nasty. I had a simple appointment. Do I need the implant replaced or not? And somehow it turned into an insurance nightmare and a need to consult with a new plastic surgeon. The surgery will be. But at least it’s not urgent. Sheesh! I needed to fit in a consult with a NEW doctor?  You know how much I LOVE new doctors right?  AND EXTRA trips to the city.  My complete favorite.

And as I tried to reach Meghan’s doctor to get things scheduled I hit so many roadblocks it was like you were just taunting me with your tongue out. I get it. Long weekend. Except it’s TOO long if you’re waiting on things like this.  I cried.  I admit it.  You got to me.


But you know what Stress? You’re taking up too much energy. And once again my kid set me straight. She swam one heck of a practice tonight. She will swim her December meet. I owe it to HER to work around her passions.  We even chuckled, knowing the reality of what she COULD be facing, and the super importance of her swimming, and singing, and acting. No matter if the doctor understands. God help me no matter if it delays things a few days. (Breathe in breathe out…) cause we have to prioritize.

Stress you don’t like focus. You like chaos. You like drama. You like mayhem. I doubt you’re gone for good. But we are so over you.

Excuse me while Peace, Serenity and I dig out the Christmas tree.

I will release you with my mind. I will release you with my energy. I will release you using ADAPTOGENS.  I’m really not interested in you…

 
We’re too busy- BEATINGCOWDENS!

(Breaking the) Code of Silence

The song by Billy Joel…

“Code Of Silence”

Everybody’s got a million questions
Everybody wants to know the score
What you went through
It’s something you
Should be over now

Everybody wants to hear the secrets
That you never told a soul before
And it’s not that strange
Because it wouldn’t change
what happened anyhow…

…And you can’t talk about it
Because you’re following a code of silence
You’re never gonna to lose the anger
You just deal with it a different way

And you can’t talk about it
And isn’t that a kind of madness
To be living by a code of silence
When you’ve really got a lot to say…

           And as happens sometimes when there is a lot on my mind and I’m left alone with my thoughts, music creeps in.  Today Felix and Meghan are on a youth retreat with our church youth group.  They are spending the weekend.  I cleaned a bunch, switched to the winter drapes and started to transtition into holiday mode.  It’s been a few tough Decembers.  After losing my Dad in December of 2013 and then in the fall of 2014 saying goodbye to Grandma Gen, Uncle Jerry, and our beloved Allie dog, I was intent on getting some time to get my heart and soul peaceful for Christmas.  But, despite my best efforts and lots of early shopping complete, my heart is heavy with worry once again.
hope-despair
           I know people will say you can’t worry and have faith.  If that’s true then my faith needs some work.  But, I think its my faith that keeps a leash on worry and keeps it far away from depsair.  And for that I am grateful, although things are getting a little tricky here again.

           I began this blog years ago with no expectation of personal privacy.  I have been gratified by contacts made all over the globe, and have enjoyed having the ability to nudge people towards support or just read that our story gives them hope.  But, then I began to write about my daughter.  And we had tons of conversations about digital footprints, and things we can’t take back.  She has been like a champion, willing to share her story through me in the name of education, advocacy and awareness. She wants a place where people can read about REAL people REALLY dealing with Cowden’s Syndrome every day.

           Yet, in her day to day life Meghan is a bit reserved.  She is careful with her words, and trusts sparingly.  She is constantly aware of the different lens through which she views life, in light of her medical experiences.  She is acutely sensitive to the fact that even the children who care, are unsure how or what to do if she talks about her real life.  PLUS, so much of what goes on is hard for us to process.  There is just no way to expect a typical 7th grader to go there.  Heck, I can’t get the adults I confide in to wrap their heads around any of this.

Rumi-On-Silence
           November was supposed to just be me.  Traveling to the plastic surgeon to determine if my right implant ripped, and scheduling surgery if needed.  I go there Tuesday.

           But, November has already been very busy.  We met earlier this month with a new doctor, an adolescent gynecologist at NYU.  She listened to Meghan’s story.  A story that began with what we hoped was just an erratic start to a teenage menstrual cycle.  She reviewed the ultrasound from July with the “abnormal endometrial thickening,” and she asked some questions to my girl.  Who at 12 is clearly adult size, just shy of 5 foot 7 and a very trim 115 pounds.  My girl had her notebook and answers.

          Then there were more questions.  Because since the middle of August there have been less than 10 days with NO bleeding.  So there were blood tests to check hormone levels.  And there was a repeat sonogram scheduled.
Ultrasound_Machine
           There was also conversation with this very young, very attentive doctor.  A  doctor who made no bones about researching Cowden’s Syndrome and telling both of us that she found 2 cases in the literature of Cowden’s patients with uterine cancer – mean age 13.5.  Ouch.  She told Meghan that she had some investigating to do.  And then we would know more. We already had this information stored so the minds race.
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Cowden Syndrome

Approved by the Cancer.Net Editorial Board, 11/2014

What is Cowden syndrome?

Cowden syndrome (CS) is part of the PTEN hamartoma tumor syndrome. Hamartomas are benign, meaning noncancerous, tumor-like growths. Other clinical syndromes that are part of the PTEN hamartoma tumor syndrome are Bannayan-Riley-Ruvalcaba syndrome (BRR; diagnosed in children), Proteus syndrome, and Proteus-like syndrome. CS is characterized by a high risk of both benign and cancerous tumors of the breast, thyroid, endometrium (uterus), colorectal, kidney, and skin (melanoma).

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           The ride home involved some of the toughest questions I’ve ever had to answer.
truth
           And then the hormone levels came back utterly confusing.  The doctor said they make no sense.  It didn’t gel with the tickened lining and the bleeding.  It didn’t gel with anything.

           And the ultrasound Thursday at 4 pm was read by Friday.  Warp speed for you experienced parents.  The doctor called me at 7 Friday night.  The conversation led us to the necessity of a biopsy.  Too many things aren’t right.  “There is no formula, no plan to proceed in a child this young.  We just have to trust our instincts.”  I like her.  She cares.  But again, I’ve been doing Cowden’s longer.  I have to be alert.

           Welome to my world doctor.

           We’ve heard this song before.  “Could be…” “Maybe…”  “We’re concerned…”  and it’s been fine every single time.

           It’s just the weather is getting colder, and after school trips to Manhattan hold no appeal.  Missing work, making it up, racing to the swim practices she loves.  We’ve done this all before.  Different reasons.  But there seems to be very little real break in between.  And the pace is hastening.

         This week is Thanksgiving.  We’ll put the tree up.  We’ll work on some cards, and I’ll help Meghan organize a few more things for the Jeans for Rare Genes Fundraiser.

           Monday I should hear about a date for the biopsy.  Hopefully.  Then there will be at least 5 days after that date for pathology.

          And the “Code of Silence” permeates a few other non Cowden’s areas of life.

           This young lady I have is strong.  She is funny.  She is tenacious.  She is a swimmer.  She is an actress.  She loves to sing.  She is NOT Cowden’s Syndrome.  But IT is trying to play dirty with her again.  And I just don’t like it one bit.

We remain BEATINGCOWDENS!

(This blog, like all other ones of a personal nature, was approved by Meghan.)
AND WHILE MEGHAN CONTINUES TO DESIRE THE REAL STORY BE TOLD, PLEASE FAMILY AND FRIENDS, RESPECT HER “CODE OF SILENCE.”  SHE WILL TALK IF SHE WANTS TO.
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