Forever…

When I married my husband I committed to forever.  It was a good call.

When we decided to have a child, we understood she would be our baby forever.  No regrets.

forever

But some time in the fall of 2011 a doctor diagnosed both of us with a rare genetic disorder.  This forever, well, this one we did NOT sign up for.

At first there was no time to process the concept of forever as it connected to Cowden’s Syndrome.  There was too much to do.

Neither of us had an “easy” medical history, so putting a name on it had its pros and cons.  But, we were handed lists of appointments to make and things that suddenly needed immediate attention.  We were quickly schooled on tumor growth and cancer risks.  We were told to remain vigilant, and that we would be “fine”.

Stay Alert

There was no time to process as 2012 had a traumatic thyroid biopsy in January and an embolization for her Arteriovenous Malformation (AVM) in her knee in February.  Then, there was my double mastectomy and my “surprise” cancer diagnosis in March, followed too closely by my hysterectomy in May.  And soon after that hysterectomy, Meghan had breast, pelvic and kidney and bladder sonograms.  There was also another MRI of the knee, and two thyroid ultrasounds that brought in 2013 with a surgical thyroid biopsy.

2012 was salvaged largely by a third grade teacher who I swear was an angel placed in our path.  Because there was real life too.  There was work, and school, and activities, and appointments that were quickly starting to overwhelm.

There was probably close to 2 years after the initial diagnosis before I even looked up.  And, when I did I had a whole host of emotions.

Forever had taken quite a toll on my girl.  Tough as nails.  Driven.  Strong.  Focused.  Always.  But, apprehensive, concerned and full of worry she was way too young to have to shoulder.

Forever.  I did my best to keep as much “normal” as I could.  Early therapists cautioned not to let the disease “define” us.  I kept the schedule delicately balanced between the necessary medical screenings and the “fun” activities.  She needed to be “like everyone else”.  So there was swim, later theater, some voice lessons, all interspersed with surgeries too many to recount again.  Some traumatizing, some annoying, some isolating, and some worrisome.  All time-consuming.  Some required physical rehabilitation, and others emotional.

busy-calendar-2

Forever.  The highway became our bonding place.  She could read and do some homework in the car.  We scheduled appointments on holidays as often as we could.  We scheduled appointments after school.  It made for some long days- often traveling 2 hours each way, and waiting forever in the offices- but we did it to preserve school attendance, and to keep her at as many activities as we could.

Forever.  She grew up.  Not just physically, but mentally.  She has broad shoulders, literally from hours of butterfly, and metaphorically from carrying way more than she should at her age.  The knowledge that this is her forever is difficult for all of us.  We make the best of it.  We talk about how grateful we are to know what to look for.  But, that gratitude, while sincere, can never replace the innocence of youth.  Innocence lost.  Forever.

Forever.  The wait time at most appointments is close to forever.  No one typically knows what to say to us.  They look at what they need to.  They offer some empathy, sometimes.  Then, sometimes out loud, and sometimes in their heads, they show gratitude that they are not fully responsible for us.  We wait hours and hours so often.  We have learned patience.  We have learned to quietly accept that if they “google” us before, it means they actually care.  We are rare.  We are 1 in 200,000.  This diagnosis is forever.

late doctor

This summer we have already gone to our 16th appointment between us.  There are 4 more just next week.

Yet, this summer she performed with a wonderful, talented, warm and welcoming group of young people at Staten Island Children’s Theater Inc. in a production of “Legally Blonde Jr.”  They like her.  Some of them know what she does with the rest of her life, and others don’t, and it’s all okay there.  They give me hope that some people, teenage people and adults as well,  are just good people.

She has been at swim practice most mornings between 6:15 and 8:15.  She has spent this week in small group lessons for swim from 8:30-3.

She has accomplished a good deal of her summer work for school.  She had peppered in the appointments in the crevices hidden in the schedule.

Forever.  The reality is not lost.  But, I am so proud.  So proud of how hard she works to stay in this world, while living in the world of chronic pain and rare disease.  It is hard work.  She does it pretty gracefully most days.

Forever.  Perhaps I could use a lesson or two from her.

Somewhere in the midst of this medical whirlwind we live.  Somewhere in the midst of working full-time, and managing surgeries and appointments, and life as it happens to all of us, I have lost track of myself.

lost

Forever.  I have one speed.  I operate in constant motion, or I am asleep.  There is rarely any middle.  The yellow legal pad is to the right of my computer, capturing every thought.  The iPhone calendar alerts me to the plans of the day.  My house, although not as clean as I’d like it, is in constantly good order.  It is a control issue.  I will own it.  There is so much flashing by in the blink of an eye, I can be sure to get the dog fur off the floor once a day, and know that it actually got done.

Forever.  I’ve lost touch with most of my friends.  Life is busy, theirs and ours.  There are only so many times you can tell the same story to people.  Our story could be recorded.  It just repeats itself.  Doctor, testing, surgery, follow-up, rehabilitation, next body part, routine appointment, maintenance, worry about a potential problem, 6 months to watch it…  I used to have other things to talk about.  Now I would be one of those people I used to laugh at on night-time TV.  I am so out of touch with the world.  My experiences are significant, but without variety.  They are heavy and too much for most people to hear.  There are no answers.

Take-time-to-enjoy-where-we-are

Forever.  The summer will pass.  We will force in a vacation and we will hold those days to be without doctors, and without summer assignments.  Then, we will do our best to put our feet in sand once.  Just to listen to the water.  We will try to get a few people to swim in our pool, so the activities of opening and closing it are not totally futile.

Forever.  Life is busy.  Too busy.  And that’s not just a Cowden’s Syndrome thing.  I heard of three deaths this week.  All three tragic.  One at age 19, one at 31, and another a bit older.  Tragedy.  They had plans.  They did not think their forever was going to end this week.

Forever.  My conscious mind doesn’t need but a split second to list dozens of real and significant blessings.  There are countless things in my life that bring me to my knees in gratitude.  But, the inner conflict is strong.  With the knowledge of the wonder and beauty in my life, I should be able to take this diagnosis, this “Forever” that is Cowden’s Syndrome, and put it in its place.

Forever.  The struggle is real.

Forever.  Stopping to find the moment, and to embrace the joy right now is not as easy as it sounds.  I can talk the talk better than anyone.  The raw truth is that I can not always walk the walk.

Our Cowden’s sisters and brothers span the globe.  Estimates are about 1,800 of us are in the United States.  I do not know the world numbers.  I know some of the people though.  One in Australia just underwent 2 MORE brain surgeries a few weeks ago.  Another, a teen who is with her Mom in Cleveland right now is waiting for news that is surely churning mom’s heart.

Forever.  It’s such an arbitrary concept sometimes.  I became a wife with the intent of forever in my heart.  I became a mother with that same intention.  But Cowden’s Syndrome threw forever at us.  It’s got the same dictionary definition, but not the same feel.

Someone asked me recently why I can’t just take time off, or block my appointments so we have “breaks”.  The truth is, I try.  Doctors want what they want in terms of follow-up, and being vigilant means I need to comply.  Most visits run us a minimum of 4 hours round trip.  Many can not be “stacked”.  I have a full-time job.  I have a high school honor student.  We need to be at work and school.  I suspect those who ask are just trying to help.  But, it makes me feel like maybe if I just tried harder…

waiting doctor

Forever.

It took me 7 weeks to write this post.  My attention span is not what it used to be.  I have a whole lot of reasons to keep making this work.  Forever.  I am blessed.  I am grateful.  I am tired.  I am human.

This blog was started in hopes that people stumbling upon it would read the story of a real family, fighting the same thing they are.  With that comes real, raw, and honest emotion.

Forever is beautiful when you connect it to things you signed up for.

Forever is not so easy when it connects to a rare disease that wants to grow things throughout your body.

Forever.  It is promised to none of us, that forever will last longer than today.  It is our decision what we do with the gift of the time we have.

I am a work in progress.  I am a wife.  I am a mother.  I am a survivor.  I am worth the hard work.

Today I will start by opening all the blinds.  Time to look at the sunshine.  Time to look at the blue sky and the flowers.  Time to breathe. In and out.

One step at a time.

We  will remain

#beatingcowdens

Forever.

 

 

 

 

Triage- A Way of Life

Triage.  The word hangs with me like the memories of countless Emergency Room visits.

Triage. Take care of the most serious first.

It’s the reason we might wait hours for stitches, and barely a moment for a trauma.

I get it.  It makes sense in the ER.  It also makes sense on the battlefield, or in other places where there is widespread injury to be treated.

The thing is, you typically don’t stay in those places FOREVER.

Places we equate with triage are not places of comfort.  And that’s where this life with Cowden’s Syndrome can get tricky.

You see, lately I can’t shake the feeling that life is triage.  24/7/365 damage assessment, and handling the most critical first.  Vigilant.  Hyper-vigilant.  ALL.  THE.  TIME.

When you live with a chronic illness, a syndrome that causes cancer by its very definition, it is so easy to get wrapped up in monitoring and preventative care.  And then there are the times that you go for those monitoring appointments and they require their own follow-up.  This condition can easily morph into a beast that can swallow you whole.

And we’re at it times 2.

What I refuse to allow this syndrome to do is take away any more from my daughter’s life  than it has.  To the best of our ability, she will do “teenage” things, and she will do things she enjoys.

But, lately that has become quite the juggling act.

I am monitored twice a year by endocrinology (post thyroidectomy), my breast surgeons, and dermatology.  I am monitored annually by gyn oncology, and oncology.  This is post-bilateral mastectomy (stage 1 DCIS) and post hysterectomy.  I am monitored every 5 years for colonoscopy.  I am also monitored with abdominal ultrasounds for 4 hamartomas on my spleen, and a cyst on my kidney.  This may not seem all that impressive, but those are just the appointments if everything goes well.  That’s not additional scanning, blood work and biopsies.  None of them are close to home either.

Not to mention, I am still searching for a local primary care doctor.  In addition, there is dental work, both routine, and the emergencies the stress from grinding my teeth keep causing.  I’ve been referred to another oncologist who specializes in genetic diseases, and I need to get in to see her.  I just completed vascular surgery, with its pre and post op appointments and recovery as well.

That’s just me.  Me, and my full-time job.  And, like every mother, my needs are not the most important.

My girl sees endocrinology twice a year.  She is still, 4 years post-op, trying to get thyroid function balanced.  She sees gastroenterology, and dermatology twice a year.  She also sees an adolescent gyn twice a year, courtesy of precancerous tissue already uncovered in her teenage uterus.  She sees a chiropractor every 2-3 weeks for pain management.  Right now, amid diagnosis of the small brain tumors, she is seeing neurology every three months for new MRI scans.  She sees orthopedics every 8 weeks.  They have been monitoring her knee for years, and recently stubborn tendonitis in the shoulder.  There have been a few MRIs of late.  She has seen physical therapy weekly since the fall, and is now working on twice a week.

She is tired.  Partially because of her schedule, and partially because of her sleep patterns.  Despite a regular bed time, she struggles to get quality sleep.  It is hard to turn her brain off, and for her to get rest.

She has developed Post Traumatic Stress Disorder (PTSD) and anxiety, secondary to consistent medical trauma.  She is working through it – but, like everything else, it is a great deal of work.

She is awaiting word that her service dog is ready.  The call could come any time in the next 6 or so months, but we are hopeful this dog will help her through what can be some trying times.

She is an honor student.  She is a swimmer – at least 5 days a week, for 12-15 hours a week.  She is in weekly vocal lessons, and a theater group that meets 3.5 hours a week.  She enjoys a local church youth groups.

She has food allergies – restricted from dairy, gluten and soy.  And seasonal allergies to all things pollen.

None of this includes normal things.  Like dentist and orthodontist visits, or even haircuts.

It is easy to get isolated.

She has a strong sense of what is right and wrong, and can be rigid in her perceptions.  But, life has shown her things most adults, let alone people her age, have ever seen.   Just as that strong mindedness flusters me, I refuse to try to break it down.  It is that same will that has gotten us where we are.

And where we are, is in TRIAGE.

My iphone calendar is with me everywhere.  I prioritize swim and theater over doctors when I can.  Physical Therapy is a high on the list right now for pain management and strengthening.

Vocal lessons keep her going, as she can sing herself through a lot of stress.  Theater is just a fun group of children, and I am not willing to sacrifice that.

I have a list by my desk of “next up” appointments, and because our availability is so limited, I am often booking months out.  We travel to most – NYC or LI.  Short on miles – but up to 2 hours each way – often.

We stack them when we can.  Two appointments are a bonus, three is a banner day.

And every year about this time I dream of a summer light on appointments.  I’ve yet to see it come true.  Truth be told, almost every school holiday and every vacation is cluttered with things we need to do, but would rather not.

There is a blessing in knowing what we are fighting.  There is blessing in having a warning system in place.  But, there are still some days when I’m totally overwhelmed that I wish I didn’t know so much.

Triage.

Triage means that right now the physical and emotional health of my teenager trumps all.

So she swims 5 days.  We do PT 1-2 nights after swim. We see “other” doctors midweek on the one day there is no swim.  We do voice, and theater on Saturday.

I make my appointments on weekends when my husband can drive.  I make my appointments a year out so I can stack three in one day in the summer and on February break.  I schedule our surgeries for February of Easter vacation when I can.

I plan our fundraiser now for October, so as not to give it up, but in hopes of finding an easier time.

I research at night.  There is always a need to learn what most of our doctors do not know.

I write, when I can.  I love it and I miss it, but time just doesn’t seem to allow.

Hair, nails, eyebrows, and things I used to enjoy are forced into holes in the calendar, every once in a while.

Dust builds in places I never used to allow it.

Friends, well I have to trust they get it and they’ll be around when there is a change in the current status of things.  I miss them.

Triage.

It starts early in the morning, waking up a teen who just hasn’t slept well.

It continues through the day – my job and her school.

After school is all about making it work.  Swim, PT, or whatever therapy the night brings.

There are often phone calls, requests for lab reports, or battles about IEP needs…  Emails go through the iphone.

Usually we are out of the house about 13 hours.

At night we pack everything so that we can be ready to begin again.

Triage.

Most critical right now is allowing my teenager to find her way, in school, in sports, and in her life.  Most critical is giving her very real scenarios where her disease does not define her, and she is able to achieve in spite of her challenges, not because of them.

In order to make this happen, everything revolves around her schedule.  There are opinions about that in all directions.  There are people who would tell me I am creating an entitled, self-absorbed human.  I don’t pay them much mind, because they haven’t met her.

When I signed in to be a parent I knew I’d be all in.  I just never saw THIS coming.

Balance needs to always be in place, where the physical needs of either of us are never overlooked.  However, non-essential appointments CAN, and WILL be scheduled around our availability.  She will be a happier, and more tolerant patient when she didn’t miss something she loved with three hours in traffic and two in the waiting room.

Triage is meant to be something you experience briefly in times of crisis.

The “fight or flight” response is not always supposed to be on.

But it is.

At this time in our lives we may not always make for stellar company, although ironically, we’d love to have more of it.

At this time, we may say no constantly, to the point where you stop inviting.  Trust me.  We’d rather go.  We actually enjoy your company.

At this time, we are so busy surviving, and taking care of the most critical needs, that anything not immediately essential gets passed by.

We are constantly evaluating order of events, but TRIAGE is fluid by definition.  Unfortunately there are so many situations and scenarios, it is hard to see through them all.

Even at our toughest times.  Even at our most overwhelmed days.  We can look around and find our blessings.  They exist in big things, like being able to physically attend 5 practices a week, and little things, like being able to WALK around the school without hesitation or assistance.

We are aware of those suffering illnesses far beyond our grasp.  We are aware and we are grateful for the health we do have.

We are also tired.  And lonely.  And often overwhelmed.  We also know this is the way the plan must go for now.  And one day it may change.

Triage is fluid.

Life is fluid.

We all do the best we can with what we have where we are.

And we remain steadfast

#beatingcowdens.

 

 

Invisible Illness – Sometimes We ALL Need Help

The day starts with me laying in my bed, trying to wrap my mind around the fact that it is time to face another day.  I lay there a few moments.  My heart rate begins to rise.  I feel the familiar ache and throb in my legs, and I quickly calculate the number of hours until I can re-visit my bed.

On the days I can move fast enough, I take a quick shower before I undertake the 10-15 minute process of waking Meghan.  Please, save the judgment that she is 14 and should be waking herself.  You’re right.  Except by the time I get to the top of the stairs there are several alarms sounding simultaneously.  She would if she could.

Waking her is no easy task.  Her body, so deeply fatigued by her daily physical and emotional battles, resists breaking those last few moments of cherished rest.  Never enough.  All teens are tired.  I get it.  I don’t know for sure that YOU get looking into the eyes of a 14 year old, bright, compassionate, articulate, and full of promise, as she pleads for it not to be morning.

The two of us together are some pair in the early hours.  My body aches but by the time I get through the shower I can usually shake some off.  I am also 30 years her senior, so living in my mid-forties, I can expect some normal aches to start to take hold.

Like so many things, Meghan’s life is mine amped up.  I was always tired, but didn’t know “train wreck tired” till the attempts to balance my thyroid in my mid-twenties.

She was 10 when that journey began.  It is not right yet, although a competent, sensitive endocrinologist watches closely.  Synthetic anything gives her body a problem.  Always has.

Adding in the synthetic hormones to contend with the suspected start of endometriosis has added a layer we need, but didn’t want.  The pre-cancerous tissue in the uterus is likely to be helped by this step, as well as excruciatingly painful periods, but like all things it is not without cost.

She drags her body down the stairs, walking crookedly to contend with a back, or a hip, inevitably and almost constantly displaced by a full foot size discrepancy.  Bi-monthly chiropractic visits put things back in place, for as long as they last on her 5’8″ frame.

As she travels the two flights down to her bathroom, there is an internal, and audible triage of the aches of the day being sorted.  It’s agonizing to watch and listen to.  You see there is never a day where everything feels well.  There is never a day where she is just tired.  There is never a day that she wakes eager to face even the most exciting events.

 

There is a part of me, a small quiet part of me, that sometimes allows myself to believe that maybe she’s playing games, exaggerating, or trying to make me insane.  And then I think quite simply, why?

Why would she WANT to hurt, or have an upset stomach, or be in pain.  She, who is eager to please her parents, and everyone she meets, would not want to be in internal turmoil or conjure up ailments.

So my mind does it’s thing as well.  “How many days has that been bothering her?”  “Do I need to take her to a doctor?”  “Can they really help anyway?”  “Is anything lasting too long?”  And so on…

And somewhere in the middle of this, as the moments kick past 6, I have to push.  We have to be out the door in order for her to be at her 7:25 period 1, and for me to be in my classroom in time to set up for my 8AM students.  There is really no time to deal with any of it.  We simply need to press through and get out of the house.

We do a lot the night before.  Lunch is packed, swim bags are packed, clothes are picked out.  Homework is always in the backpack.  Mornings are not for things that can be avoided.

I have to admit there are mornings where it has gone very wrong.  There have been mornings where I have not felt well myself, and my patience with the multitude of issues required to just get herself dressed and ready are forgotten temporarily.  I am not proud of the mornings where the clock passes the point of panic and I evolve into a screaming shrew.  But, this is about honesty, and honestly, it happens.

Smooth or not, we find ourselves in the car on the close to 20 minute ride to her school.  And that is where it gets trickiest.

Months ago Meghan was diagnosed with PTSD – Post Traumatic Stress Disorder, secondary to medical trauma she has endured in her young life.  That PTSD has been exacerbated through the years through a variety of triggers she works to manage.  But, many days it seems her “fight or flight” is broken and she is wound into a high state of awareness, of EVERYTHING.  That means every human interaction, every test, every assignment, every competition, every audition is just amped up.  Sometimes the volume is so loud it can feel almost crippling.

And, yet still, as we work daily, she has to get out of my car and walk into that building alone.  Some days are easier than others.  Some days, I’m tempted to snatch her and drive far away where I can keep her safe and calm.  But, she’s not 4 – she’s 14.  And, she has to go.  She knows it too.  So she does.

It’s not about the people anymore.  Although it was for a few years.  Now, thankfully, it’s not.  The people are kind.  They students are friendly, and while no one is friends with everyone, she is after only about 20 days, building positive relationships with peers, her swim team, and many adults.

So why?  I’m not sure.  And I’m not totally sure she is either.  That’s why we’re working on it.

But, there are theories.

Post Traumatic Stress Disorder is not rare.  But, Cowden’s Syndrome is.  And in my child the two are intermingled.  The relationship between chronic medical issues, 18 surgeries, tests, scans, hospitals, isolation, heightened anxiety, the need to self-advocate, a lack of trust for the many medical professionals who have handled things wrong, and the isolation and overwhelming feelings this can cause is just the tip.  Coupled with generally feeling off, having a super sensitive stomach, relentless seasonal allergies, and being an athlete who simultaneously loves her teams and fears competition can create consternation.  This is the very tip of what I know to be a Titanic sized iceberg we are working on melting.

She likes her school.  She likes the people.  She likes the environment.  And yet there are days it is a struggle, a moment by moment struggle to make it.  She hurts.  She pushes.  She is stubborn.  She is strong-willed.  And for as many times as those characteristics cause me to want to bang my head repeatedly against a brick wall, are as many times as I thank God she is that way.

She likes to swim too.  She likes to swim for her school.  She likes to swim for her 12 month team.  She enjoys feeling strong, and having a body that reflects her hours of training. I am grateful that she is an athlete.  But, the battle to get into the pool when every piece of you just hurts, and you want nothing more than to be in your bed is a battle her coaches or her teammates do not fully see.  I mean they see the performance anxiety, which is WAY deeper than what it seems to be, but the rest, the full deal is carefully and intricately hidden like so much else.  No wonder she is tired.

 

We are working on it.

Every day is a battle to get through the day.  Sometimes physically, and other times mentally and emotionally.  Yet, day after day, it gets done with a grace that often blows me away.

Every house holds secrets.  Private, messy moments that are not shared with the world.  We are not the only ones, and we are not oblivious to the moments others must hold close to themselves.

Collectively, we all need to stop judging.  We must stop imagining their life is perfect because it looks so on facebook, or instagram, or snapchat.  We need to be kind.  We need to go back to the basic rule that “If you have nothing nice to say – don’t say anything at all.”

We need to not profess that we can fix others problems, or make ourselves feel better by offering “quick” solutions.  It is hard to watch others in pain.  It is not easy to accept that sometimes there is nothing we can do besides be a friend.  We need to acknowledge pain, and struggle as real without giving in.

In this house weekends are still about survival.  They are about recovery.  They are about storing up a ‘spoon’ or two so that we can use them in the coming week.

One day I’d like us to have a social calendar.  I’d like to get out as a family and make some memories on a sunny October day.  But, today was not that day.  Today was swim practice and vocal lessons.  That is what we could do.  Today.

The evening winds down and we are faced with the reality that sleep will need to happen again.  Sleep is tough times.  Not for lack of fatigue, but for a teenagers over worked mind.  We are working out a system.  We are seeing some progress.  The struggle is real.

We are working on it.

This week we contracted with a company for a Service Dog to assist with the PTSD.  It will be one of many interventions we will use.  We have sent a deposit.  The process has begun and can take up to a year.  We are hoping it will be sooner.

If you have read this far, and you have real suggestions for grants we can apply for to assist in raising the cost of this dog, your assistance is valuable.

We are not looking for an analysis, or reasons why we Meghan might NOT need a Service Dog.  We have medical professionals encouraging this.  We will deal with logistics as the dog’s arrival looms.  In the mean time, we are working purely on fundraising.

The organization we are connected to is http://www.medicalmutts.com  They are an accredited business that we researched extensively.  When the dog is ready we will need to spend a week in Indiana picking it up.

The decision to make this move was based on many factors, but it was guided by Meghan.  She has researched.  She has thought.  She has read.  Her father and I have learned to trust her instincts.  Undoubtedly, that is one of the reasons we have come so far.

Looking forward to hearing your encouraging, helpful comments –

We remain

#Beatingcowdens

“… Turn on the Light!” -Albus Dumbledore (J.K. Rowling)

Last week my daughter pulled on a shirt before we headed out to the doctor for the umpteenth time this summer.  I didn’t think much of it at first.  I was grateful she was dressed and pulled together, and ready without event.  As a matter of fact, I was in full on grown up mode, rushing her almost 5’8″ frame and her crutches along to get us prepared for the obligatory ridiculous traffic as we traveled what seems to be the longest 30 miles ever.

I don’t think I even read the shirt until we were in the waiting room a few hours later.

I had read the Harry Potter series as each book came out – beginning as a 5th grade teacher more than 20 years ago.  My daughter enjoyed the series in its entirety in a brief period during her year in second grade.  I enjoyed the books, each one, but it took a reread or two to analyze things on a deeper level for me.  Dumbledore, the wise guide had an infinite amount of wisdom to offer.

Whether she realized it or not, my girl was sending a message that morning – to both of us.  There is an ongoing battle, here, and I suspect in many lives, to live the days as they come.  We try to “get out of our own way” and “our own head” as the case may be.  And it is not easy.  When we look further ahead than the day, sometimes even the hour, or moment, it is easy to get swallowed up.  The darkness comes hard and fast.  Too many appointments, too much worry, too many “what ifs,”  too much time wasted, too many plans unfulfilled.  No one likes the dark.

So don’t stay there.  Turn on the light.

Thank you J.K. Rowling, for giving us Albus Dumbledore.

That appointment Tuesday, it wasn’t great.  There are still no real answers.  There is swelling on the knee.  There is pain.  There was confusion from the surgeon.  He decided we had rested the knee.  Now, it was time to add two medications to treat the knee, a neoprene sleeve for swim, and PT back in the equation.  For 2 weeks we will move it and see if that helps.  Nothing more than educated guesswork.

I hate it when we have to guess.  But, I am grateful for a surgeon willing to logically troubleshoot.  We visit him again in 2 weeks.  He is confused, but he is smart.  And he will not quit.

So with a surgeon who made the choice to keep working on it – my girl did the same.  Every day we have choices to make… all day… every day.  Those choices shape and mold us.

My daughter was to be part of a beloved theater group these first two weeks of July.  Some of the most compassionate, talented and caring young people are in that group, guided by adults that are not afraid to give everything they have for the betterment of the children in their charge.  Last year, she had arguably one of the best experiences of her life, and when the word came that she could not participate, that the knee was not prepared for that amount of standing – she was crushed.  But, being who they are, the staff, and the students alike not only allowed her, but welcomed her to be with them during rehearsals.  As we watched two amazing performances of “Aladdin Jr.” on Friday night, I know she wished to be on the stage, but the pure joy of excitement for the success of these children – her peers- was evident.

She could have sat home and sulked.  They could have said she could not come.  Instead, the best possible outcome came from unfortunate circumstances.  Another major life lesson.  Executed flawlessly.

My daughter has dreams.  Big dreams.  She aspires to be a better human, and to assist those who struggle.  She wants to learn her voice, and sing to the best of her ability.  She desires to perform, on stage, often.  She seeks venues for community outreach and has goals to raise awareness and funds to cure PTEN Mutations like our Cowden’s Syndrome, and other rare diseases.  She strives to be an athlete.  The same thrill of competition that creates great anxiety, lights a fire deep in her soul.  She also has hopes, standards, and expectations for herself.  She actually, most days, can do a lot of the parenting work without me.  But, sometimes when those dreams and goals are forced to pause, and rest for whatever issue is going after the body at that time, its nice to remember the words of Dumbledore, “It does not do to dwell on dreams and forget to live.  Remember that.”


Exact, precise language.  That is how my girl likes it.  We sometimes kid that she will be an attorney.  At the very least, an advocate for herself, and maybe others.  There is little gray area with Meghan.  She likes people who are kind.  She does not like people who are not.  End of story.

Or is it?  In this age of adolescence there are times when lines are clear, and times when they are blurry.  Emotions run high.  There are times when things are said, and done that are deliberate, and mean and awful, and other times where things FEEL deliberate and mean and awful where that was not the intention.

That changes things for the speaker, but rarely for the recipient.  With intent being often left to the interpretation of the recipient,  words can cut more sharply than a sword, and pierce the soul and the spirit.  Words hold great power.

The absence of words, those kind sentiments, thought, but never spoken, can injure as well.

My girl is far from perfect.  I myself am far from perfect.  We have many conversations between ourselves about the power of words.  Sometimes we hurt each other’s feelings.  Usually we talk it through.  Our relationship invariably gets stronger.

That’s because we speak.  And we hear.  So many times when words have hurt, a conversation could clarify so much.  An honest reflection that not a single one of us is perfect in our speech or actions is invaluable for growth.  Friendships grow, not over text messages through an iPhone screen, or photo exchanges… friendships grow when we take the time to talk, and laugh, and listen and hear and care.

And, perhaps many times, when you are lonely or simply alone, those are the times words, or their absence, can hold the greatest power.

Nature vs. Nurture.

An especially complex conversation in light of genetic discoveries happening every day.

In this house my daughter, although she first learned of it as she turned 8, was born with Cowden’s Syndrome- a PTEN Mutation leading to a high incidence of benign and malignant tumor growth.  She was born with this condition, because I was born with this condition.  That statistics and numbers are real.  They are hard core.  They are disturbing.

A 2012 article about PTEN related cancer risks.

However, because we are BORN with this Syndrome, it does not mean we will develop every possible manifestation.  We have AVMs and thyroid issues, and lipomas, but of yet, no colon issues at all.  I had breast cancer, early stage.  So did my mom who is not a PTEN patient.  We have large head size, but not autism.  You get the idea.

I believe we are born with certain things.  I believe that Meghan and I were born with Cowden’s Syndrome, and I even have theories about its origin.

I also believe that EVERYONE has something.  We are either born with it, or it develops.  Whether it is a physical ailment, or an unfortunate circumstance, there are forces affecting each of us.

Life is not smooth.  But within life there are choices.  Every day there are choices.

Choose kindness.

Choose compassion.

Choose love.

Choose forgiveness.

Choose happiness.

Choose to find your “Never Give UP.”

Choose to trust.

Choose to take risks.

Choose to care.

Choose to push yourself.

Choose to believe you can.

Knowing, that sometimes those choices will hurt.  Sometimes they will leave you angry or even furious.

Know in your heart that those are the only choices.

As you “grow to be…” it is those choices that will help you navigate the path to be the very best version of yourself.

Some people go their whole lives and never meet their hero.  I gave birth to mine, and her stamina and drive continue to inspire me daily.

#beatingcowdens

A Perfect Storm

 

Sitting, sopping wet, in the middle of the ocean, in your small row boat.  Your feet are wet.  Your fingers are wrinkled.  You are cold, exhausted, and often frightened.  There is no access to the weather channel.  Your connections to the real world have all but vanished.  You focus every ounce of your strength on keeping the boat afloat.

You try to maintain a sense of calm, but your insides are turning worse than after a serving of spoiled mayonnaise at a summer barbecue.

There are moments when you think.  Hope.  Pray.  That it will settle down.  There are moments when you dream of enough sunshine to shed your wet clothes and warm and dry yourself.  There are moments when you can almost see what appears to be a friendly ship in the distance.  And in those fleeting moments you even remember what it felt like to socialize, to chat, and to laugh – about every day life.

Your faith reminds you that Jesus is in the back of that boat.  You know better than to let your insecurities wake Him.  You know in your core that you are loved, and protected.  

And then another wave crashes over the side.  You can not put your hand on the oar.  You lock eyes with your husband in front of you – always with you.  You put a hand on your girl, sopping wet beside you.  You strengthen your resolve.  

I have been fading out of touch these last few months.

I love writing.  It is my therapy and my release.  It clears my mind and cleanses my soul.  Except there is a balancing act to be had -tenuously protecting privacy while fulfilling what we believe is our calling to share a raw, honest view of our lives “Beating Cowdens.”It is hard to realize breaks in time.  Things blend together so readily it is hard to discern where one event starts and another stops.  There is only rarely a pause between medical appointments, some for the same issues, some for new ones, and others for maintenance.  Some appointments are mine, and some belong to Meghan.  All but a few require hours and hours of travel.  It safe to say they cost us on average 5 hours a day.  But, those 5 hours are not of my choosing.  I can’t say, decide to get up at 5 – deal with the appointment and be ready to start the day at 10.  That’s just not how it works.  Most are scheduled somewhere between 10 and 3.  That means by the time we get home, there isn’t much time to do anything.  Or, we spend the day waiting to go – so there isn’t much to get done.  There are no summer day trips planned.  Making plans to catch up with friends is something we avoid – because we so often have to cancel.  The cycle continues.  There is just getting by.  And some dreams that maybe we can get to the beach one day this summer…

Somewhere early this year Meghan started to be done with it all.  This is not an easy place to be in by any means.  She is a month shy of 14, and this is her journey for the REST of her life.  Teenage years are nothing most of us would want to revisit.  The extra complications of finding your way amidst a chronic sense of isolation (the knee precludes too much walking, it prevents basic sports games most of the time, it leaves the competitor side-lined too much, the allergies mean the food has to be different, the pain is unusual and constant and managed in some “unorthodox” ways, the number of times she has to say “no” because she has an appointment, an ER visit, or something else medical is astounding and limits the invitations, ETC., ETC…) coupled with an understandably defensive posture, and a desire to just BE, can make for some lonely times.

 

Her sleep patterns went off the charts some time in February.  My sleeper just couldn’t fall asleep.  She’d lay still for hours.  Her pattern was restless and fitful.  I watched my girl pull away from her swimming.  I fought to push her.  Even after her best meet ever in March – I could no  longer get her up to a morning practice.

Meanwhile, I never made connections that are so clear now.  In January we were released from the Interventional Radiologist who had completed the 5 embolizations over 6 years on the AVM in her right knee.  He released us to the care of the orthopedist who had already performed an arthroscopic lateral release in 2015 to help shift her patella into place.  It had begun to slide as a result of residual damage from small amounts of lingering blood in the knee.  By early this year the warning signs had begun to develop that the knee was off.

A visit to the orthopedist in February confirmed what Meghan undoubtedly knew.  He offered her the chance to try to intervene conservatively and put a brace on to hold the patella in place.  Maybe it could “convince it” to move on its own…

She took it in stride, like always.  We bought leggings to accommodate the giant addition to her thin frame.  She dug in and pressed on.

While all this was going on the chronic congestion that had begun in November worsened.  The ENT noted swelling, but called it allergies, the obvious choice this season.  There was a nasal spray added, and a week of a decongestant.

Attendance in school started to be a struggle.  There was fatigue.  Low grade infections.  There was pain.  So much pain.

The chiropractor visits became more frequent.  The leg length discrepancy made more noticeable by the limping to accommodate the brace on the shifted knee cap.

My surgery in March helped nothing.  There was so much vocal rest required it tossed us all on edge more than normal.

Swim practice was lessening.  Focusing on school was a chore.  Sleep was becoming near impossible.

The breathing worsened.  We justified the “worst allergy season ever.”  Her voice started to feel the effects of this chronic congestion.

In April the inevitable was spoken.  The knee would need a repeat of the 2015 arthroscopic lateral release.  We wanted to schedule it immediately.  The first available day was her the opening night of her school play, a play she had earned the lead in.  The next opening was almost a month later on May 20th.  We would have to wait.

The pain increased.  The frustration increased.  The sleep, and subsequently the desire to swim decreased.

The “Coaches Award” at the swim dinner made her feel honored.  She respects her coach so much.  But, she couldn’t reignite the fire.

The surgery in May went well, even though I had worried with the increased congestion that they could not put her under anesthesia.  But, it was fine.  She went through the 2 hours like a seasoned veteran.  That made number 18.

Rehab was tough.  The pain was significant.  But, it faded gradually.  Our favorite PT began to work her magic.

She got around on crutches, figured it out and made it work.  Again.  Always.

She got off the crutches exactly in time for 8th grade prom.

 

She was healing.  Physically.

She made it back into the water.  She swam the 18th of June, and the 19th too.  She started to talk about it in a more positive way.  The 20th was awards night for 8th grade.

My 8th grader was named Salutatorian for a graduating class of almost 400.  She received several academic awards that night. I sat in the auditorium with the last few months, and years running through my mind.  People knew some, but no one, not even I knew ALL of what it took to be her, every day.  And here she was, not only doing it, but excelling at it.  It was a good night.

Until she came home, and put up her feet.  And there, on the side of her surgical leg was a 4cm x 6cm mass, with rapidly increasing swelling.  Breathing, we strategized.

We took the crutches back out.  I stayed up most of the night making sure there was no bleed on the knee.  I sent her to school the next day to get her cap and gown and yearbook “like everyone else.”

Then we headed to the surgeon.  His nurse practitioner sent us to the ER.  They could not get their acts together and after 7 hours discharged her on crutches with a script for an MRI.

 And an IV that went unused…

She was to be “minimal weight bearing as tolerated.”  They wanted her back at the doctor that Friday.  I finally spoke up and said no.  She was going to her graduation Friday – NOT tainted by a medical appointment.  We settled on Tuesday.

However, with no answer, she was to graduate on crutches.  So, a friend suggested if she had to use them, she should “own” them.  My husband spray painted them white.

Sunday we drove to Long Island for that MRI.  The one I knew they would not do locally.  30 miles.  2 hours and 15 minutes home.  We caught up with some friends that day.  Good thing.  We needed them so badly.

As she was in the MRI machine for her knee she told me something was “blocking” her nose inside her head.  If you’re a Cowden’s Mom – you just went to tumor as fast as I did.  My head spun.

Monday the ENT was able to ease that worry.  He told us it was a mass of infection.  That likely she had had a severe sinus infection for 8-10 weeks.  He anticipated 14-28 days on biaxin to get after it.  That was alongside a short course of oral prednisone.  He nose was so inflamed there was almost no air passing.

A sinus infection usually has me out of commission in about 3 days.  I just shake my head in awe sometimes.

Tuesday the 27th we trekked out to the surgeon again.  The MRI showed the mass to be a huge fluid filled pocket.  There is also fluid all through the knee joint.  He looked, and looked.  He has done many surgeries.  He is skilled.  He shook his head and finally told us he did not understand.  He had “never” seen this before.  And now we had to wait for her knee to tell us what to do next.

Cancel camp.  No Drama Camp she had loved so much.

Postpone PT indefinitely.

No swim practice yet.

And there we were – facing another summer…

But somehow, all of this seemed to weave together.  The perfect storm.  The knee, the sinuses, the sleeplessness, the fatigue, the low-grade illnesses, the sinus infection…

Somewhere through all this we spent a few visits with a brilliant doctor who diagnosed Post Traumatic Stress Disorder.  PTSD.  Like with the soldiers, or other trauma victims.  “Secondary to significant medical trauma” she said.

It all made sense, except the “post.”  There is nothing really “post” about this ongoing scenario.

That, and the Salutatorian thing.  As impressed as I am – I am still in awe.

The journey continues, and we will above all things remain…

#beatingcowdens

It’s Not Over Yet…

Tonight my search for perspective was harder than it normally is.

Tonight I needed a glass (or two) of wine, some time alone in my office, and plenty of music.

And as the lyrics roll through my head in the eclectic mess that spans, Contemporary Christian, Classic Rock, and some alternative memories from back in the day, I somehow start to find myself again.

I am generally a very positive person.  I am able to find blessings in unlikely and hard to reach places.  I make a point of focusing on these things for so many reasons.  Primarily, I find it is necessary to be positive for my health.  While I don’t believe a positive attitude alone will cure illness, I do firmly believe a negative one, or a constant state of stress and worry can worsen illness.  We certainly don’t need that.

But, lately I’ve been frustrated.  I’m even a little angry.  You see – everything is NOT fine.

And I’ve been avoiding my computer because I’d rather write when my perspective is in its proper place.  One of the reasons I love to blog is because I can get right in my head by the time I’m done.  I can typically work through whatever is gnawing at me.

There are drafts in my folder.  Unpublished, unfinished work.  I’ve tried, but I’m struggling.

Logic leads me to retrace the obvious.

In our house the diagnoses came about five and a half years ago.  I was 38 and Meghan was 8.

In most of the people I’ve interfaced with who have Cowden’s Syndrome, their diagnosis is less than 10 years old.  I know there are others, but this is the majority.

There is a growing group of us who are parents.  Now, in my case, my diagnosis was made BECAUSE of Meghan’s.  But, in many cases the opposite is true.  There comes a point where the signs are either apparent, or subtle, and something prompts the formal diagnosis of PTEN Hamartoma Tumor Syndrome, in some form, in our children.

Anecdotally, we are not the only house where the syndrome seems to manifest worse a generation down.  This is a story I have heard many times.

There is a special kind of knot that forms in your stomach and lingers, forever, when you realize that you are somehow responsible, in an unintentional, yet undeniable way.  Your child has this syndrome because, even with a current estimate of a 1 in 200,000 diagnosis it is an autosomal dominant condition, which means that if you have the mutated PTEN gene, 50% of the time, it will pass to your child.

Between us, since Meghan was born in 2003 there have been 30 or more trips to an operating room.  On 18 of those visits I have watched my girl head into surgery.

And I know all the blessings bestowed upon us.  I know the beauty of benign biopsies, and the gratitude of legs that allow for walking when the alternative has certainly been possible.  I know the strength and resilience of my daughter, and the grace of God alone.  I know the grit of a child just out of her 7th knee surgery who understands the recovery process better than any PA she will meet in the surgeon’s office.  I know the feeling of bruises on my knees as I give thanks for my child who is ABLE to recover.  I get it.  I truly do.  I’m grateful.  I am.

But, you know what else?  Sometimes I get angry.  And, that’s OK too.

I’m learning that part of being able to be positive is allowing myself to FEEL and WORK THROUGH ALL the emotions that come my way.  Even the ones that hurt.  Even the ugly ones that don’t have flowers and rainbows attached.

This is reality.  This is our reality.  And I am not about comparisons.  I do not profess to understand anyone else’s reality any more than I could expect them to understand mine.  I do not use words like “worse” or “better” or “harder” or “easier” or “fair” or “unfair.”

What I can tell you about our reality is that 18 is too many surgeries for a 13-year-old girl.

I can also tell you there will be more.  For both of us.

Vigilance, a necessary reality to keep us in front of the astronomical cancer risks associated with Cowden’s Syndrome will lead to more surgery.  And we will hope and pray each is followed by a benign biopsy, or an encouraging word from an orthopedic surgeon trying to preserve a knee damaged by a mischievous AVM.

When I got my diagnosis, I was almost 40.  I was married.  I had a little girl.  I had a home.  A career.

When my girl received her diagnosis she was in 3rd grade.

Swallow that.

It doesn’t taste very good.

Cowden’s Syndrome is isolating.  In addition to numerous food issues, and immunological issues, and significant knee trouble (understatement of the year,)  there are SO MANY doctor’s appointments.  There are countless blood draws.  There are so many days I pick her up at school and we do ANOTHER 4-5 hours round trip in the car, traveling to NYC, sitting in traffic, parking, waiting, sitting in more traffic…

As connected as social media can help you be, there is a lack of connectedness that is inherent with not being there.  Being absent.  Being unable to go on certain trips.  Being unable to do the things kids your age can do…

When I was a child I always “knew” something was wrong with the ridiculous number of surgeries I had, but it was different.  It was not the same as knowing for sure that your genetic mutation was going to guide portions of your life whether you like it or not.

When you have one thing wrong, whether you break an arm, or have your wisdom teeth out, or your tonsils, people seem to know what to say.  When you constantly have something wrong, some type of surgery, or some type of recovery on the agenda, it gets harder for everyone.

People don’t know what to say.  So they don’t…

Cowden’s Syndrome can be very isolating.

What about our children?  What about our children who are being diagnosed younger and younger?  To some extent, yes, “Knowledge is Power,” but at what cost?

We are forced to make the logical choice for necessary screening appointments, and often surgery, while often having to skip social, cultural, or sporting events.

We are forced to say no to social engagements so often, that people forget to keep asking.

Our youngest children at diagnosis may not fully understand the scope of what is now their’s.  But, they will.  If they have a parent with the same syndrome they will watch.  Everything.  If they are the first in the family they will piece it together.  Really there comes a point there is no keeping it from them.  Then what?

I am blessed with a young lady who reads like a book-worm, and has a solid comprehension of people, personalities, and her environment.  I am left only with the option to tell her the truth.

Sometimes the truth gets stuck in your throat, burns a bit, or leaves some nasty reflux.  Yet, still that bitter pill is the only one we’ve got.

I sometimes wonder how different things could have been, if…

But it is my girl who stops me.  Without this diagnosis she knows I would not be here.  My breast cancer was uncovered by her diagnosis and that diagnosis undoubtedly saved my life.  Without Cowden’s Syndrome she knows she would have become someone different.  Someone else.  And that wouldn’t have been right.

While I don’t believe in a God who wants us to suffer, I believe in one who uses that suffering to allow us to become a better version of ourselves.

My girl started Junior High with a broken foot.  During her 3 years there she endured less than perfect social relationships (read, a few very mean children and my child who didn’t always have the patience to contend with teenage normalcy) and 7 surgeries.  SEVEN. Seven recoveries, and pre and post operative visits too.  She did that while holding an average of well over 95% every single marking period.  She did that while making enormous strides as a competitive swimmer.  She did that while learning that she had a the voice of a singer hiding inside.  She did that while performing in several productions, practicing after school for months each year.  She did that while spearheading 3 successful PTEN Fundraisers, essentially putting Cowden’s Syndrome in the vocabulary of our community.  She’s ending Junior High on crutches.  Unfortunate bookends, or a reminder of the strength and resilience of a young lady who refuses to be defined by her disease.

I am sometimes not even sure if she is aware of her accomplishments, as she is so busy pushing onward to stop and notice.

Who sets the example here?

I guess I need to stop hiding from my computer.  Perspective never really leaves.  Sometimes it just needs to be worked through.

This diagnosis stinks.  This syndrome is a real bear to contend with.  It is lonely and isolating and leaves little time to even see family, let alone friends. However, as the saying goes –

And that is probably the real perspective.

And almost as if perfectly timed, I found my title for this blog – as the Pandora radio plays..

“They are inside your head
You got a voice that says
You won’t get past this one
You won’t win your freedom

It’s like a constant war
And you want to settle that score
But you’re bruised and beaten
And you feel defeated

This goes out to the heaviest heart

Oh, to everyone who’s hit their limit
It’s not over yet
It’s not over yet
And even when you think you’re finished
It’s not over yet
It’s not over yet
Keep on fighting
Out of the dark
Into the light
It’s not over
Hope is rising
Never give in
Never give up
It’s not over…”

(It’s Not Over Yet – For King and Country)

#beatingcowdens

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We are determined to remain

#beatingcowdens

We will not be silent!