Anticipation…

Funny how things creep into the mind.  Then there was this Heinz commercial from the 70s.

Anticipation – is making me wait…

Tomorrow we do it again.  Surgery 13.  Vascular malformation, left palm.

Hopefully it has kept a safe distance from the artery.

Hopefully it is smooth and easy.

But, we worry.  And it’s normal.  Just because you’re USED to something, doesn’t make it OK.

Anticipation…

We will rest, although I don’t expect much sleep.

“She’s so unusual…” and Other Ironies

This is quite a garble of thoughts… good luck!

** This blog was written over 2 days.  The BLUE type was written today, Sunday July 19th, and the BLACK type is from Saturday, July 18th.**

I’ve been asked by people who read this blog, several lately, “How do you stay so UP, all the time?”  Sometimes I find that question to be the biggest irony.  I struggle often, and deeply.  The whole purpose of this blog is a candid description of our journey with this beast called “Cowden’s Syndrome.” Let none of you ever imagine for a minute that we are “UP” all the time, cause it’s just not true.

But, as difficult of a road as this is, I have tried always to remain acutely aware of the connections we have to others, and the never-ending reality that “everyone has something.”

everyone you meet

So often my writing is where I work it out.  I type.  I think.  I read and reread.  And, cheaper than a therapy session, I am able to tease away the negativity and find the focus I need.  And when I am unsure, and it just doesn’t sound right.  I wait.  Just like I advise people to think before they speak, “Is it true? Is it kind?  Is it necessary?”  I try to think before I publish.  So last night I sat wrestling with this.  And I never hit publish.

From “Corner of the Sky,” Pippin soundtrack

Everything has its season
Everything has its time
Show me a reason and I’ll soon show you a rhyme
Cats fit on the windowsill
Children fit in the snow
So why do I feel I don’t fit in anywhere I go?

So again we hear, “That’s really unusual.”  “I’ve never seen that before.”  “Typically…”  And I chuckle, in frustration and in the irony of it all.

This time it was at the dentist.  Meghan felt something in the back of her mouth.  An X-ray revealed an impacted wisdom tooth.  She’ll be 12 next month.  The consult with the oral surgeon is on the 29th, two days after she meets with the hand surgeon (again) to discuss the vascular lesion on her palm.  Her abdominal sonogram to screen for Cowden’s related issues is on July 31st.

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This week someone will call me with the name of a foot and ankle surgeon, suggested by the orthopedist who did her knee surgery based on her foot pain and size discrepancy.  Who really knows where that will lead?

I’ve got a bone density test set for Monday, to determine if 30 years of thyroid medication, and early menopause forced on by a hysterectomy at 38, has depleted my bone density.  My next phone call needs to be to the vascular surgeon.  He had some success with the right leg in February.  The left leg is in dire need now.  That is as soon as I can settle the errors on the anesthesia bill.

The number for the “Skin Cancer Screening Clinic” at NYU sits on my desk.  Meghan and I both need to be scheduled.

I just finished completing the papers for her medication for the 2015-2016 school year.  They are copied, one is filed, and one is set to be mailed Monday.

We’ve started to discuss, the two of us, dates for the 2016 “Jeans for Rare Genes” fundraiser.  We’ve got some neat ideas.  It passes the time.

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For the second year in a row, Meghan was nominated for the Global Genes Project “Teen Advocacy Award,”  and although she did not win, it is an incredible honor to be making a noticeable difference at such a young age.  One day we will take her to California for the Global Genes Advocacy Summit.  One day her vision of a denim ribbon necklace will come to fruition.  One day.  But not this year.  Because this year I am trying to schedule vascular surgery that weekend.  Because we have to prioritize.  Right?

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I have set some fitness goals this summer.  I am setting a 10,000 step a day minimum.  I am aiming for at least 5 miles a day.  My dog is in the cross-fire of this goal.  She is my walking partner.  Because she likes to walk – but maybe not quite that far- and she can’t really say no.

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I am always struck by the ironies in life.  I am stronger than I have been in years.  In many ways I am healthier.  I have found Isagenix, and I feel better.  Stronger.  More resilient. More able to cope with life’s obstacles.

Which is good.  Because life has a tendency to be really isolating.

I suppose we all feel that way sometimes.  And many of us feel that way most of the time.  But, sometimes that is little consolation.

I am grateful not to fit in with the Moms of really sick kids.  I don’t envy them at all.

But, I can’t find a spot with the Moms of mostly healthy kids either.  Unless I don’t talk much.

Cause talking about a “healthy sick kid” is confusing, and frankly more than most people can, or choose to process.

I want to spend time with people my own age.  I have lots and lots of people I like, but not too many friends to get together with.  Sometimes I wonder what it would be like to just get together.  And chat.  Maybe over lunch, or dinner, or drinks.  Or maybe have a barbecue, or even a night with other couples.  Where everyone socializes.  And no one is overly worried about anything.  But we end up declining the few invitation we get because something always seems to be in the way.

This life is isolating.  The constant doctor’s appointments, surgeries, food allergies, medical bills, prescription drug battles, mobility restrictions, have made us difficult to “hang out” with.  And I get it.  And it doesn’t make me mad.  Because it is what it needs to be right now.  And there are friends I talk to and text with.

Do not misinterpret this as a need or a desire for pity, or sympathy, because it couldn’t be farther from that.  What I write here is a simple representation of facts that are.  They just are.  And maybe one day they won’t be.  But, I have already learned not to wish life away, not even the uncomfortable parts.

stand alone

But on nights like tonight, when two decks on my block are lit up with social gatherings, I find that I long for summer days of freedom.  I crave careless, schedule free days.  I dream of getting up one morning, and hopping in the car with Meghan and just going somewhere far away from doctors and hospitals.

Just like the curly haired people who wonder about straight hair, I wonder. But, even as I wonder, in my heart I know this journey is taking us somewhere.  Somewhere with an end I can not see.  There are stops along the way to make us stronger, wiser, and more patient.  There are lessons on empathy and compassion to be learned.  There are experiences that will turn us into the people we were meant to be.  The road is long and winding.  Sometimes the climb is tough.  But, but the view, when you really stop and look, is amazing…

Rivers belong where they can ramble
Eagles belong where they can fly
I’ve got to be where my spirit can run free
Got to find my corner of the sky…

I ended last night feeling lonely, and lost.  The song from Pippin had been in my head all day, resurrected from memories of ages ago.  Yet, I couldn’t shake it.  Where do I go?

This morning Meghan was well.  She woke up well, and early enough to make a two-hour morning swim practice, which she completed.  I had time to walk a few miles near the pool.  The sun was beautiful, and the air wasn’t quite that warm yet.  There were birds singing happily, and flowers to appreciate.

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After swim we made it to church.  It had been a few weeks since we were able to get ourselves there.

And in the bulletin I was met with a quote,

“I know I cannot enter all you feel

nor bear with you the burden of your pain

I can but offer what my love does give – 

The strength of caring, the warmth of one who seeks to understand.

This I do in quiet ways – that on your lonely path you may not walk alone.” – Howard Thurman

There was a basket of rocks where we were instructed to take one to represent us.  The rocks were placed in a bowl, and water would surround those rocks symbolizing the love of Christ.  Stories were told, personal and biblical, about love and caring for the physically, and emotionally wounded.  

We were invited to choose other rocks, to represent people we loved, who had needs weighing heavy on our hearts.  As I chose mine my eyes were full of tears.  Not of sadness for those people, but of the promise that they are also enveloped in the love of God.  My hand was full, I must admit, and I took a few moments to say a prayer over each rock as I placed it in the water.  And then, tears of pride, as I saw my daughter had selected her own “rocks” to pray over.

The closing hymn (words and music by Marty Haugen, 1987) began like this;

“Healer of our every ill, light of each tomorrow, give us peace beyond our fear and hope beyond our sorrow… You who know our fears and sadness, grace us with your peace and gladness, spirit of all comfort fill our hearts…”

And the idea that we are here to “Bear one another’s burdens,” permeated my heart.

Bear-Ye

I am not “UP” by my doing at all.  I treat my body well.  I treat my mind well.  And I allow my soul to be cared for.

My peace comes from the knowledge, the belief, the conviction that we are guided by a loving God.  That all things are not mine to know, and that through His grace alone we have the strength to remain,

“BEATINGCOWDENS!”

Mortality

Mortality_AF

The awareness that one day we’re not going to walk this earth anymore.

Not exactly dinner conversation, but, for lack of a more gentle way to say it, mortality is everyone’s reality.

We face this reality at different points in our lives.  Some are frighteningly young, and others are blissfully old.  But, eventually, that awareness either creeps in or hits us like a speeding train.  (Figuratively, or course.)

In my opinion, so much of the rest of your life is defined by what you do with that realization, that understanding that there is no promise of tomorrow on this earth.

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For me, my solace, my comfort, and my focus, come from my faith.  My deeply held belief in God, and that life does not end, merely changes, as we are welcomed into Heaven.

Whatever your own belief, is, your own reality, my hope is that it brings you comfort, solace, and gives your life on this earth purpose.

As a daughter of a cancer survivor (18 years and counting!!) I watched my Mom grapple with her own mortality at an age I consider very young.  (young for her, and for me too!) She got it.  She found clarity, but it was a few tough months.  And even then as close as I was, I knew the significance of what I was watching, but I did not get it, not really.

I like to say my breast cancer was found, “by accident” or “divine intervention,” whichever you prefer.  But, the moment in the surgeon’s office, that day in March of 2012 when I became a “survivor” by default, started my own journey with mortality.  I was 10 years younger than Mom was at the time of her diagnosis.  I had just undergone what I had prepared in my mind to be a “prophylactic” mastectomy to battle astronomical cancer statistics associated with the new diagnosis of a PTEN Mutation called Cowden’s Syndrome, that Meghan and I had received less than 6 months prior.  When the word malignant was read, there it was; laying thick in the air for my husband and 8-year-old child to process with me.

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And there was reality.  Unable to ignore.  Cancer had lived within me.  Could it live again?  Would it?  When?  Why was I going to be OK when so many others were not?  Was I going to really be OK?  What if they missed it, something bigger?

I was fortunate.  Fortunate in the sense that a double mastectomy removed the encapsulated stage 1 cancer.  I needed no treatment, no medication.  But, my status had changed.  In the eyes of the doctors, I was now an even greater risk.  Every single lump and bump would be scrutinized, scanned, poked, prodded, and usually removed.  The loss of my uterus and ovaries weeks later were a testament to this new-found realization that I was a risk.  A significant risk.

Cowden’s Syndrome is one of those diagnoses that forces you to face down your own mortality at sometimes alarmingly young ages.  An internet friend just made a jubilant post today that her youngest was now 10 and cancer free, a title she did not have herself at that tender age.  The things we celebrate…

My Cowden’s Syndrome people are known to me mostly through the internet.  We live across the country and across the globe.  We navigate through different time zones and support each other through scans, scares, surgeries, reconstructions, and cancer.  While this syndrome does not manifest itself the same in each of us, there are alarming similarities that make us kindred spirits.  There is that “Sword of Damocles” hanging above our heads.  There is that constant sense of not knowing, of hyper-vigilance, of bi-annual screenings, and worry.  We stare at our own mortality each time we look in the mirror.

We have an extra bond when it connects to our children.  A universal acceptance of the unfair nature of these young ones even needing to understand a bit of mortality.  We have juggled the questions, inevitable after MRIs, CT scans, and biopsies galore.  We have gently answered questions about family, and future, that have no real answers to date.  We ache for them.  We wish to take it all away.  We have some guilt in the knowledge that in most cases this disorder, (whether we knew it or not) was passed from us.

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Mortality will bind you, and if you’re not careful it can blind you.  That is why there are support groups, for cancer patients, and others who have come close to losing their lives.

This weekend I spent some time in West Virginia with another group of men, bonded by their grapplings with their own mortality some 48 ish years ago in the Vietnam War.

I will protect their privacy here, and tell their story as generically as I can.

I connected with Alan, about 6 weeks after my father died.  Dad had earned a Purple Heart in my mind, for an incident that occurred while he was serving in the United States Marine Corps.  The award was never granted, and I wanted to pursue it on his behalf.  So, I sent some letters to Marines, whose contact information I obtained from a reunion Dad attended in DC in 2006.  I wanted to know who remembered him, and his story.

Alan contacted me first, verified my information, remembered the story, and has been in touch with me since.

My Dad, the "Irish Marine"
My Dad, the “Irish Marine”

 

 

I sent 20 letters out.  EVERY SINGLE MARINE responded to me.  EVERY ONE.  Whether they knew Dad or not, whether they could help or not, they ALL reached out to express their condolences.  Many shared some funny anecdotes.  And as hard as I’m sure it was, they all connected with me.

I had heard about the Brotherhood of the Marine Corps.  I could not have fathomed the depth of that bond.  One after another, they all left me with the same heartfelt sentiment.  “You are the daughter of our brother.  We will help you always in whatever you need.”

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Now, I knew, or at least I could infer that their lives had not been any type of peaches and cream, on the island of Vietnam, or when they returned.  My Dad battled his own demons for many years before our relationship began to form.  But the offers of these Marines were sincere, and genuine.

Alan proved that to me through regular conversations, and almost heroic efforts to get someone to listen to the story of my Dad’s injuries.  In the end, we lost the battle on a technicality.  Although “The statements provided clearly establish that your father was injured as a direct result of enemy action, the available information fails to establish that your father was treated by a medical officer…Wounds not requiring treatment by a medical officer at the time of injury do not qualify for the Purple Heart Medal.”  The letter was cold.  The case was closed.

We lost the Purple Heart but gained so much more.
We lost the Purple Heart but gained so much more.

I was sad, mad, angry and disappointed.  But I was so grateful for the Marines who wrote letters of support.  I was grieving the fact that my Dad had carried this close to him for so many years, and lived with chronic pain as a result.  I wanted this for him, because he never fought for it himself.

And as things go, it was not to be, but Alan did as he promised and remained in constant contact with me.  He heard my sobs as I glanced at Dad’s headstone for the first time. His were the comforting words that started my healing.

So, this weekend I headed to West Virginia to thank him myself.  I met a group of Vietnam Era Marines, several of whom had served with my father.  I watched them together, in awe an amazement.  I was welcomed into their group with instant acceptance.  And as I sat and watched them laughing together, I noticed the war stories were sparse, and funny when they were told.  Surely a contrast to the realities they had faced as young men years ago.  But, the bond between them was unbreakable.  There indeed was the Brotherhood of the Marines, but there was something else.

Mortality.

They faced it in the most horrendous of ways.  They lived it daily.  They buried their brothers.  They knew their return home was not a guarantee.

And once you’ve faced that kind of life altering lesson in mortality together, you are bonded for life.  As Alan said to me, “If you weren’t there, there are no words to describe it, and if you were, there are no words needed.”

I was among a group of people who had faced their own mortality almost a half century ago.  And they have a bond that can not be explained.  It is amazing.

marine loyalty

And among the most amazing to me was the woman I met.  She was not local either, but she, like I, had traveled for this celebration.  It was not her first time.  She had been around for almost 10 years.  About 10 years ago the woman, who was an infant when her father died a hero in Vietnam, met the men he served with.  She had never met her father, but here were father figures galore ready to embrace her.  And they did.

A bit ago her father’s diary surfaced from his time in Vietnam.  She shared it with me and the last entry written before he died was about the thought that so many of them must have had daily.  His diary ends with, “When will it be me?”

marine brother

Once you have looked your own mortality square in the eye, you can not walk away the same person.

But, it is up to you what you do with the rest of your life.

As for me, I choose bonding with people who “get it,” be they old friends or new.

I choose focusing on what we can do, not what we can’t.

I will not choose reckless living, but I will daily live with the knowledge that there is no guarantee of tomorrow on this earth.

Whether facing your mortality is something you endured, something you will live with daily, or something you are yet to face, how it changes you is really up to you.

As for us, in this house, we choose to remain focused on

BEATINGCOWDENS,

WHILE CELEBRATING ALONG THE WAY.

 

Hurry up… and WAIT!

Hurry up – and wait.  And wait.  And wait.

I don’t know many people whose lives are not a bit of a rat race these days. We race to school and work.  We race to take our children to the many places they need to be.  We race to shop, and cook, and clean, and wash clothes, and we sometimes even race to arrange our schedule so we can have some time off.

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In our house we race.  Gratefully, we have added something fun in the form of Swim Team this year.  There are many weeks there is even time for two practices.  So she won’t be an Olympian.  But some fun is an improvement.

Because without that Swim Team – it was all medical – all the time.

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Since birth really, as Meghan’s medical history really goes back to the beginning, but especially since our diagnosis of Cowden’s Syndrome in September 2011, we have developed a list of doctors all across the city of New York.  And they all require regular check ups…

top doctors nyc 2013

“Skip it…” whispers the voice inside your head.  “I don’t have time…” “We won’t make practice…”

But “skipping it” is not a luxury we can afford.  Cowden’s Syndrome has robbed us of the luxury of putting it off.  It is the clock that is always running.  It is the reality of my breast cancer – beaten.  It is the “reminder” in my iphone.  It is the spreadsheet necessary to sort out pediatric and adult specialists for just about every body part.

And before we even get to the routine screenings, there is the weekly Physical Therapy, necessary to combat the lax joints, and weak core that leave my girl prone to injury as she tries the most fundamental “kid” tasks.  Thankfully PT is a joy, and she truly loves to “PLAY” with Dr. Jill, but all that love not withstanding – it’s another day during the week scheduled.

There are hematology, genetics, interventional radiology, infectious disease, rheumatology, dermatolgy, neurology, and endocrinology to name a few.  Some are once a year.  Most are twice.  And that’s all well and good if everything checks out fine.  However, the need for testing arises regularly, which leads to MRI/MRA, lab work, repeat appointments….

Last year I tried to get them all done in July.  That was pure indescribable hell and it swallowed our whole summer.  Now, I schedule them a bit separated, carefully attentive to the time frames suggested as optimal to screen for any of the pesky cancers we are prone to.

And, while the cancer risks peak around 40, there are several cancers that regularly strike Cowden’s patients in and before their teens.

So, we schedule appointments after school, on holidays, in the evenings, and whenever we can fit them in.  We often find ourselves racing into an appointment after a long day – only to find ourselves waiting  to be seen.

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“Hurry up – and wait.”

Meghan is an outstanding “wait-er.”  Partially because she’s used to it, and partially because she knows it’s necessary.  We know exactly what to pack, whether its homework, or an Ipad, or a book, to keep her occupied.  But she would rather be playing.  Or swimming.  Or resting.  Or crafting.  Or just being a kid.

We find ourselves facing the same problems many other families face – laboring to fit in time for fun.  But it is further complicated by fatigue and a lack of stamina.  She can not walk more that about 3/4 mile without wiping out.  She will, when time allows, sleep 13-14 hours a night.  So we have to always be careful not to push too hard, because the repercussions can be serious.  Sometimes I imagine friends think we make it up.

“Hurry up – and wait.”

And we raced into Sloan Kettering Cancer Center on December 19th after school.  I whisked Meghan out of her holiday party, braved the traffic and rushed into the office in time for our 3:30 appointment.

But some time before we got out of the car and walked into the building, Meghan told me about the “bump” in her neck.  The one she feels every time she goes to put her necklace on.  The one that she thinks is making her cough… that persistent tickle in her throat going back… oh… a few weeks.

So at 4:30 when we were called into the office for the routine endocrinology visit, the one the doctor had told em we did NOT need to have an ultrasound before because things were “stable” he almost immediately zeroed in on the spot Meghan mentioned.  He asked for a tape measure.  His eyes were serious.  He spoke of significant growth.  He said we needed a biopsy.

“So let’s do it.  I am off for 10 days.”

“Well, you know, with the holidays…”

“Let’s hurry up and get it done.  I will take whatever you have.”

And on Friday the 20th when my phone rang at work and I got the news that we were going to first need an ultrasound BEFORE the ultrasound guided Fine Needle Aspiration – I just about went through the roof.  The doctor explained that the radiologist doing the FNA needed a recent ultrasound.  (You mean like the one I had asked for with the December appointment all along?)  I explained I would stand for nothing less than scheduling the ultrasound and the FNA that very minute.  So we did.  Ultrasound December 23rd.  FNA under general anesthesia on December 31st.

“Hurry up – and wait.”

Apparently no one got the memo things have been a bit stressful around here this month.

So we did the ultrasound on the 23rd.  30 minutes with the tech.  Then 15 minutes for the doctor to review it, and another 20 minutes for the radiology doctor to rescan.  Nothing going on on the 23rd of December.  No worries.

“Hey, that’s a lot of nodules on a young lady…”  says the doctor.  ARGH!

So when do we squeeze in something fun?  Something she can say she DID on the vacation?

We made it up to see the New Year’s Eve Ball very early on that Saturday morning.   Meghan trying out the camera her Grandpa Tom left for her when he passed away earlier this month.  Trying to find the time to view her world through a camera lens.  We spent about an hour.  Then we went home.

Photo credit -Meghan 12/28/13
Grandpa Tom’s “smile”

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There were 2 play dates.  Lovely girls.  So I guess there was success.

And then today.

Arrive at 6:30 I was told.  So we were up by 5, and on the 9th floor by 6:30 – only to find it locked.

“Hurry up – and wait.”

please wait

We eventually found our way to the IV room, and then to Interventional Radiology on the 2nd floor.  The procedure was at 8:15 and lasted double the time it should have.

We left with discharge instructions and word that we SHOULD have pathology by Friday, but maybe Monday.

I may have a few cocktails myself as midnight approaches.  If I stay awake that long.  After all its been a long day, week….

And we know Daddy’s got the New Year’s Eve Ball well taken care of.

 

 

50,000!

Unwinding from another wild week I checked in here to find that at some point very soon this “Beating Cowden’s” blog will clear 50,000 views.  The number is almost incomprehensible to me.   I am humbled by the support, and the ability to raise awareness of ours and other rare diseases.

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This week Meghan endured ANOTHER MRI.  This time her head was firmly fixed in a cage as she had her brain scanned on every level. while receiving 8ccs of the gadolinium contrast dye that I suspect has been helping cause the headaches to being with.  Irony.  Exasperation.

The bright spot came in the words, “There is no tumor.  There is no AVM.”

Sweet relief and agonizing frustration simultaneously.

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Grateful beyond measure that there is no need for brain surgery.  Relieved to my core that there is no evidence of any suspicious mass or vascular malformation.

Distressed, worried, disturbed, and sad about the diagnosis of chronic migraines.  Please spare me “It could be worse.”  I know.  So does she.  But I have to tell you about 3 hours after starting a migraine I am done.  She has been at it 2 months.  She has not missed a day of school, managed an almost perfect report card, and made it to some swim practices.  She just keeps plugging.

So, we doubled the medicine – striving for the day the pain scale hits 0 again, and hoping it’s soon.

Lots of kids without Cowden’s get migraines – but somehow as the detective in me uncovers her triggers I suspect they will be linked.

And one day soon she will feel strong enough to get back into the pool for swim practice.  Her health has allowed her only about one practice every 2 weeks.  Her goals are much higher.  Patience.

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Working on ways to safely rid her body of gadolinium and other toxins not proven to cause, but clearly not helping the headache situation.  We will figure it out.  The stakes are too high to give up.

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The rest of the stuff.  The worries that are just real life worries, and not Cowden’s worries at all.  The ones I can’t blog about.  They are the ones keeping my heart extra heavy.

Wishes 1

Thanks for tagging along on our journey!

Catch-22

catch-22 is a paradoxical situation from which an individual cannot escape because of contradictory rules.[1][2] Catch-22s often result from rules, regulations, or procedures that an individual is subject to but has no control over. 

-Wikipedia

 toxicworld

You know a person could go crazy trying to keep themselves free from toxins.  These days it seems to be an all consuming, and virtually impossible task.  Sometimes I wish I knew a lot less.  Sometimes maybe ignorance is bliss.  And cheaper.  And a LOT less stressful.

But then again, I think my girl would be a whole lot worse off.  And therein lies the “Catch-22.”

Meghan has been seen by a “biomedical specialist,” (insert voodoo, witchcraft, flawed medicine – whatever makes you happy) since she was about 2.

Back in the summer of 2005 things were definitely NOT ok here.  I knew it deep down where that Mommy gut nags at you.  We had speech therapy.  We had occupational therapy.  And we had a child who had already been hospitalized twice with chronic viral infections, was not sleeping, was not playing, was not talking, and was most of the time flat out uncomfortable.  We also had a vast array of doctors who dutifully collected my Co-Pays and did absolutely nothing but tell me they “didn’t know.”

So, I read.  I researched.  I altered her diet.  I added some key supplements.  I started to see results – but not enough.

This doctor, whose office we just left a few hours ago – over 8 years since our initial meeting- got to know Meghan.  He told us he could help.  And he has.

We have worked together through dietary interventions.  Supplements.  IV treatments.  Countless blood tests.  And, when we needed it – Xrays, and guidance towards the diagnosis of “milk of calcium” of the gall bladder at age 3.5

He has been my sounding board through lots of ups and downs.  I have never, and will never take any one person’s word on what I should do for my daughter – doctor or not – but he is one of the opinions I value highly.

He had the gumption to prescribe digestive enzymes after YEARS of horrendous stool and horrific stomach aches.  “We don’t need to biopsy the pancreas. Sometimes we just need to use our heads to see what works.”  Not too often these days will you find any medical professional with that confidence or drive to do what is right.

Through the years we have visited his office at least 3 times a year for lengthy consultations.  He has suggested countless things to help aid Meghan’s immune system, her pain, her tendency towards chronic fatigue.  I have listened to many, and ignored a few.  Conversations have evolved over the years as we have each stayed up to date on current research.

The initial diagnosis of Cowden’s Syndrome seemed to bother him a great deal.  He was bothered by the ramifications of the syndrome, but also by the fact that there was no way this was “all of it.”  Meghan “doesn’t fit in a box,” he would always tell me.  Never let them try to put her in one.

And, perhaps truer words have not been spoken.  As we have navigated the world of Cowden’s Syndrome, I have been acutely aware that there is still “something else.”  But, since we are yet to put our finger on it – we continue doing the best we can.

Cowden’s Syndrome involves screening tests.  Regularly.  For cancer, and vascular malformations that can form anywhere at any time.  X-Rays and CT scans are discouraged because of radiation exposure and a fear that cells can be “tripped.”  So MRI is the test of choice.  MRI with contrast that is.  Gadolinium to be exact.

I’ll get back to why that is important in a bit.

We have spent the last 2 years especially, (but really the last 5 or so for Meghan considering the AVM in her knee was discovered LONG before the Cowden’s Syndrome diagnosis) being scanned.  In July Meghan had an MRI ordeal that involved 4,000 images, 3 hours, 2 tubes, and 3 doses of contrast dye.

We have spent the last few years dealing with a rapidly growing child whose pains seemed to be increasing exponentially.  We have gone from treating with Advil to treating with 200 mg a day of Celebrex.

We have spent the last few years trying to help her stay calm- only to watch her anxiety mount.  In September she was diagnosed with Alopecia Areata– an autoimmune condition that causes hair loss.  Fortunately for us it seems to be contained to a small area, but it is an unnerving diagnosis still the same.

We understand the role of autoimmune disease and stress, and toxins.  We understand the role that stress can play on a genetic mutation of the PTEN (tumor suppressor) gene.  We understand that there is external and internal stress.

We do what we can to control stress on the body.  We make sure she has “down time.”  We try to help her get rest.  We got her involved in swimming, a sport she loves. We make sure she eats a largely organic diet free of the foods she can not tolerate like gluten, dairy and soy.  We eliminated almost without exception preservatives and dyes.  We bought new pots and threw out the plastic plates we used to use sometimes.

We started giving her ISAGENIX, the organic superfood that is as pure as I seem to be able to find.

And even at that – there is an awareness that we can NOT control it all.  There is an awareness that by whatever mechanism that is broken, our girl does NOT detoxify properly.  We are aware of toxins in the air, in our soil, and even in our filtered water.  We are aware that her body is confused by this world we live in, by the GMOs that are even hidden in her organic diet.

GMO safety-testing

We run, like Indiana Jones, out in front of the boulder, in constant motion.  One stride ahead…

Chelation

Chelation therapy is a proven treatment for lead poisoning and poisoning from other heavy metals.

http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/pharmacologicalandbiologicaltreatment/chelation-therapy

The term has been spoken over and over again by the “bio medical doctor.”  Chelation is the concept I found every single excuse to overlook and ignore.  The idea  shook me to my core.

The turning point – Alopecia Areata and the words I had heard him say to me for years, “She is primed to become an autoimmune train wreck.  Let’s try to clean her out.”

toxic

She went for her first treatment last month.  After the treatment there is an 8 hour urine test to measure the toxic metals excreted.

She went for her second treatment today and I got to look at the printout of last month’s urine analysis.  So, even as I held her, and she wailed in pain, and two veins rolled before they got a good one, my resolve was strong.

There are several metals that were high.  None of that made me happy.  But the most disconcerting of all…

The reference range for that MRI contrast dye Gadolinium I mentioned earlier is <0.4.  Her output was 190.  No I am not forgetting a decimal.

Gadolinium.  Necessary for the cancer and vascular screenings set to be part of her life forever.  Except apparently her body can’t seem to excrete it.

Toxic metals

Catch-22

Keep Swimming…

 

 

Balance

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I am almost at the point where I have stopped waiting for the break.  I am just about ready to stop wondering when there will be rest.  I am almost ready – but not quite.

September as a teacher is a month full of new beginnings.  One of the blessings of having a job that begins and ends each year is the “newness” that September brings with it.  There is something special about meeting new students, or old friends after a summer vacation.  There is something exciting about anxious eyes and new backpacks, and children eager to reconnect with friends.

back-to-school

So as I ran through September for about the 16th time, I took the time to appreciate the wonders and the smiles of the children around me- if only for a few fleeting moments.  See, I remember September 16, and 15, and 14 years ago.  I remember September when I was still a bit unsure of myself.  I remember September before there was a husband, and a house, and a daughter, and 2 dogs, and 2 Cowden’s Syndrome  diagnoses, and countless appointments, and surgeries, and medical bills, and paperwork at home to match the paperwork in school.  I remember those early Septembers thinking I was overwhelmed.  And, like so many things happen in life – looking back now I realize I had no idea.

This week we organized a new car, soon to be picked up.  We got an antibiotic for the sore throat full of strep symptoms again.  We got a new roof on the house.  The new roof prompted a thorough cleaning of the entire second floor, which led to the Halloween decorations coming out a bit too early.

This weekend we packed up all of Meghan’s clothes – and I mean virtually all of them.  We gave them to a beautiful family, and started over.  She has grown this year several inches, has a foot as big as mine, and we will soon be sharing tops.

This weekend there were lessons to plan, IEPs to read, standards to sort through and a binder to prepare.  I love my work, I really do.  But the setup, and the stipulations placed on us from places way above us are exhausting in and of themselves.

This weekend there were bills to pay.  A giant stack, somewhere in between a pile of mail that needed to be shredded and just to the right and a bit higher than the mountain of laundry in the middle of the basement floor.

Ok - so maybe not QUITE this bad..
Ok – so maybe not QUITE this bad..

This weekend, in between cleaning and sorting, and laundry, and preparing food for the week, there was this headache.  A nasty one that just wouldn’t quit.  She started complaining Tuesday and it just persisted.  And as life continued at its rapid pace, and constant motion, there was Meghan in bed for the better part of Saturday.  No swim practice for her, always a gut wrenching decision, her body can not endure this pace of constant motion.  And my heart, torn in two, kept a watchful eye on my girl as I continued the whirlwind.

I remember being her when I was younger.  I remember watching my mom and sister in constant motion.  I remember being sick the morning after a sleepover.  I remember just not feeling well.  But none of that, not any of it, makes me feel any better when it is my girl, sitting and hurting.

There is worry all around.  I am aware of the friends and family struggling with illness of all types.  I am aware of their angst and their hurt.  And as much as I pray for peace for them, for their loved ones, for their healing I have to honestly say the biggest piece of my heart sits with my beautiful girl.

We help her rest.  We feed her the most potent superfoods we can buy…

She is trapped in a schedule with no relief, in a body that sadly lacks stamina, with a syndrome that is angered by overwhelming fatigue.  But what to give up?  5th grade promises to be fun, but busy.  Then there is physical therapy – twice a week, and swim practice on the schedule 3 times a week.  Plus doctors appointments, like the hand surgeon follow up in Manhattan on Thursday…

And while we work on her to keep her anxiety in check, there is always mine to look after.  When you have a syndrome that grows tumors, nothing is ever without a high alert.  A headache, probably allergies, but what if…  The pain in the leg, probably a muscle pain, but what about the AVM… And if she could have an AVM in her knee, and her hand…

one-day-at-a-time-tshirt_design

Life is about balance.

September is chaos.  It just is.

But the nice thing about September is its followed by October.

And while I am not hopeful for huge amounts of downtime anywhere in the foreseeable future, I am confident we will sneak in some pumpkin and apple picking one day in the next few weeks.

And I am learning that while this Cowden’s Syndrome, and all its extra worry is going to linger forever, somehow, some way it seems to make the little moments that much better.

Maybe that’s where the balance comes in…

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