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.

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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.

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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.

 

 

 

 

Just Do Your Job

I guess as I think about the last few weeks, so often the thought comes to mind that if people would just do their job, thoroughly and with accuracy and pride, many problems could be avoided.

This weekend I compiled a 5 page letter, and a 20 page PDF and Emailed it to the CEO and director of operations of the local hospital that I feel could have done a far better job handling my February 21 vascular surgery.  It took a little time to get it out, and it was frustrating, but simultaneously cathartic.

Early in the healing process my sage daughter said, “Mom, you’d never let anyone treat my body like that.  Why is it OK to treat yours that way?”

It isn’t my dear.  And I know she’s always watching.

I took my notes all through the week before and after the surgery, and then I rested to see if I could get it out of my system.  It lingered.  So, yesterday, off it went.  I told them I’d like the name of who they handed my case off to, by the close of business on Friday 3/30.  There’s a post it on my desk.  To be continued.

Just Do Your Job.

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When I finished that letter, I wrote one to my health insurance carrier.  We are fortunate enough to have two, but keeping things straight can get confusing.

Meghan met a new neurologist in December of 2017.  When we went to the appointment there was no one to collect a co-pay.  I figured they would bill it.  Then, I forgot.  The news of the finding of a “lesion” was enough to jar me out of my normal routine.

Sometime in January I received an “Explanation of Benefits” and a $35 check from my insurance carrier.  This is not uncommon, as often I have co-pays refunded once an office receives the co-insurance payment.

A February MRI and neuro follow-up gave news of in fact TWO 1cm lesions, and some swelling.  All of which will need to be watched.  I got a bit distracted.

The check sat, with several other checks until March 8th, when I deposited them into an ATM.  That was a Thursday.  On March 11, I logged onto my online banking to see that the check had a “Stop Payment” and in addition to having the $35 deducted, I was charged a $12 fee.

Furious was an understatement, as I am meticulous about my banking.

Just Do Your Job.

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On Monday the 12th I received a letter from Chase Bank explaining their end of the explanation of my fees.  My insurance carrier told me that the doctor contacted them on February 15 to ask them to stop payment on the $35 as I had never paid the co-pay.

The doctor never billed me, just reached right to the insurance company.  They later admitted never billing me.  No apology.  The insurance company never reached out to me.  Never told me the check had been stopped.  I didn’t go to the bank with the check until 3 weeks later.

Within 72 hours my bank had notified me online and by mail.  My insurance company had no explanation as to why they never afforded me the same courtesy.  My bank actually DID their job.

When I took it to a supervisor over the $12 fee, and my embarrassment, and my annoyance at the number of hours this was taking from my life, she offered me the standard PO Box to send my complaint.

I asked her to do better and she told me to fax the receipt of deduction to her.  She said she’d expedite it.  It’s been 10 business days.  The formal complaint letter is written and mailed.

Just Do Your Job.

Then, there is the doctor who refuses to figure out mail order.  My insurance has denied payment of the drug until it goes to mail order.  Thank goodness it’s affordable.  I’m paying it while simultaneously working out getting him to mail order it.

Just Do Your Job.

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Tomorrow, I will make a few calls on our newest denial.  I suspect it will take a few weeks to sort out, but I will win this appeal.  Because, no one in an office is going to tell my that my daughter has “recovered,… and no further improvement …. is expected.”  Nope.  Not working for me.

Apparently they weren’t  at the swim meet last weekend.  The meet that her PTSD might have kept her from without a hard push, but the meet where she DESTROYED all her best times.  At that meet I had proof that further improvement IS EXPECTED.  Because it is happening.

Just Do Your Job.

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That swim meet last weekend was 6 hard months in the making.  There has been so much work in place dealing with her PTSD, her anxiety and her panic attacks.  She had to make sacrifices and step away from her commitment to a local theater program.  I didn’t give her much choice, even though I knew I was probably taking one opportunity at theater from her to give her another at swimming.  Parenting is about making tough choices.  She’ll be at all the rest of the theater practices.  She had to KNOW she could get through this meet.

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This event is just exhausting. She has a love/hate battle with it. Sometimes she even catches the “2Fly Flu”

 

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The improvement from entry to finals just shows how much she needed to be there and get this out of her system. She’s got more progress in her.

 

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It’s been a goal to go under a minute for over a year. She crushed it.

When you are 24/7/365 fighting a chronic illness, and in this case a rare disease, no value can be placed on physical strength, actual and perceived.  You see there is never a moment when you are not waiting for the other shoe to drop, right on your head.  So the need to be physically strong, is a NEED, not a luxury.

I sit here now, Sunday evening again, and I think of all the things I would have liked to do this weekend.  I think longingly about how nice it would be, to be in Alabama at the PHTS Patient Symposium, and if not that, then to get a manicure, to catch up with old friends, or even to stop and read a book.  But, I know that is not meant to be.  Not right now.

For now, at this point  my life, weekends are about putting out the fires that creep into the world all week.  It is about uncovering the “in box” and fighting the fights that will get my daughter and myself the care we need and deserve.

I like to think it won’t always be this hard.  But, if I’m honest I suspect it will be.

The trick is going to come in my figuring out how to keep it from swallowing me up.  There is always going to be a fire, a battle, an appointment, or a medical drama.  ALWAYS.

This weekend, I had dinner with my husband.  I took a walk, AND I went to one store for fun.  It’s not much, but it’s a start.  It’s a process.

The battles rage on.

Vigilance is required.  This journey is not for the faint of heart.

But we are establishing support from afar.  We are finding each other.

As one of my groups says #WeAreCowdenStrong

And we, in this house, remain

#beatingcowdens

 

The Best You Can…

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

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

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

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

improvise adapt overcome

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

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

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

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

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


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

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

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

Then Felix headed with Ken to shovel out my grandparents.

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

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

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

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

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

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

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

 

Compassion Saves the Day!

Instinct.

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

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

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

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

“Mom, I don’t want him to stick me.”

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

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

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

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

“You can not go in.”

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

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

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

“Well this is a very strong magnet.”

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

“Mom, my braces!”

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

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

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

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

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

mama bear

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

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

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

Mama-and-baby-bear

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

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

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

MRI Dog (Rocky) always helps too...
MRI Dog (Rocky) always helps too…

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

We had NEVER been in a machine like THIS before!
We had NEVER been in a machine like THIS before!

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

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

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

treat house

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

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

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

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

Sometimes I forget

Sometimes-I-Forget

Sometimes I forget that Cowden’s Syndrome is not just Meghan’s – it’s mine. If I am to be precise, it is Meghan’s BECAUSE of me.  And I say that not out of guilt, but more as a point of fact. And I had plenty of time to think about THAT – and the rest of the week – in the MRI this morning. mri_machine Last summer when I saw the oncologist, and the surgeon about the 4 sizable vascular tumors on my spleen, they were unsettled.  I fought hard for my spleen.  I felt I owed in to my emptying insides, currently missing my uterus and ovaries.  I “won” a 9 month reprieve.  And not the sentence is up for review.

So as I arrived at the facility at 9AM, and by the stroke of those angels, found on street parking in NYC, I dutifully filled out the intake papers.  Papers that, well between Meghan I, I have lost count of the number of times I have completed.

Any chance you might be pregnant? Asks the male technician who brought me back.  Even though I had written the date of my hysterectomy on the intake papers, I dutifully replied, No.  Not that I ever WANTED to be pregnant again, but you know sometimes they could read…

Any implants in your body?  Metal, I asked?  No, ANY as he clutches the paper I spent 15 minutes completing – unread.  Yes, I have breast implants – a double mastectomy 2 years ago.  I gestured toward my purposely selected “NO, They’re not real – the real ones tried to kill me” shirt.  Not even a smile. no they aren't real Why are you having this exam?   By now I am ready to scream JUST READ!  But I know better.  I have played the game too often, and the man you yell at now could be the one inserting your IV in 10 minutes. Because there are 4 tumors on my spleen that are being monitored.

HOW DID YOU FIND THOSE?  asked the non- reader. Well, I have Cowden’s Syndrome – and we tend to grow tumors.  So they were found accidentally during another scan.

Oh.

That was the end of the medical talk.  Maybe the words “Cowden’s Syndrome” stumped him.  Just as well.  Directions on what to take off and what to leave on.  Locker key in hand, I was led up the stairs by the non-reader to the tiniest MRI machine I have ever seen.  (and I have seen quite a few.)  Meghan did some time in this machine during the 3 hour MRI debacle of her hand last summer.  I felt a wave of nausea and I am not typically too freaked by these.

“How did I end up in the tiny magnet?” The non-reader, still with me, grunted that I was the thinnest one in the waiting room.

 Not sure if that was a backwards compliment.  Thank you ISAGENIX – I think. isalean-bar-chocolate Grateful I had held my tongue it became apparent that the non-reader and I were in this together.  As he told me to lay down so he could start my IV.  I sat straight up.  My daughter gets a few things from me.  I sat up and had the IV placed so the toxic gadolinium could drip slowly though my body.  I laid down, closed my eyes and kept them closed the whole time.  I am pretty sure my nose would’ve been almost at the top.

And as I spent 30 minutes amid the noise and banging… “Breathe in… breathe out… stop breathing.  Breathe normal.” breathe stone My mind wandered.  I hadn’t given much thought to the MRI, or the reality that it COULD indicate growing tumors, and another surgery.  For so many reasons I have blocked the thought.  But, now its too late.  It’s like telling a secret.  The images have been shot.  The report will be read next week.  The reality that already is has been exposed, and I just get to wait and see.  Cowden’s Syndrome.  We grow things.  It’s what we do.

I am grateful maybe, for the insane pace of life.  For the full time job.  For the daughter who swims, and has PT and doctors galore.  For the car that won’t go into gear – the 1996 that has likely seen its last trip – but can’t be replaced right now.  For the paperwork that keeps me on my toes, and sometimes drowning a bit.  For the letters that need writing, and the never ending list of phone calls that need to be made. time struggle I am grateful even for the “calm” day, when we didn’t have much to do – until I noticed a bulge in the sidewall of the tire Thursday.  So I grumbled a bit, then thanked my angels and headed off to Costco, where they put on the donut and told me to come back Friday. I did, and the tire is new.  The car is safe.

So I logged onto my online bill pay to see what had cleared and got the shock of my life as the zero balance hopped off the page.  Phone in hand immediately calling my bank.  Apparently it only took someone a day to extract $2000 from my life, and start a cycle of more unending paperwork.

Two hours at the bank yesterday, an hour at the Police Station. My only wish for the dimwit who decided to pay his credit card bills with my money is that if he REALLY wants to be me – he takes the whole deal. The doctors, the tests, the tumors, the bills, the anxiety, the WHOLE thing. wind After all, its’s only fair… if you want to take someone’s identity – you should knwo what you are getting into. Sometimes I forget I have Cowden’s Syndrome.  I am always sure Cowden’s Syndrome doesn’t have me.  There are too many other things vying for my attention. breathe As the non-reader said, “Breathe in… Breathe out…. Stop Breathing.  Breathe Normal.  OK your test is finished.” HA!  If only he knew…

STUPID CANCER show!

I am absolutely high on adrenaline right now…

In August the husband of a friend from High School asked me to be on “The Stupid Cancer Show.”

https://www.facebook.com/stupidcancer

stupidcancershow

I said yes, not quite sure exactly what would be involved, but knowing that it was a rare opportunity to speak to Cowden’s Syndrome awareness.

Tonight was the night.

What an amazing show.  I am so glad to be familiar with it now, and you should check it out!

Somehow the words came pouring out.  It’s amazing what speaking from the heart can do.  I can only hope that someone tonight knows what they didn’t know before.

I find there to be no coincidences in life.

After my segment in the “Survivor Spotlight,” the show focused on toxicity and cancer.  Well even though I just listened in to THAT part of the show, I was so in tune to what they were saying.

http://www.blogtalkradio.com/stupidcancershow/2013/10/22/stupid-environment

(My part of the show starts at about 11 minutes, and ends around 30 – I talk too much!  But I managed to mention my friends at Life with Cowden’s, PTEN world, and The Global Genes Project!)

Near as I can figure these days, breathing increases your cancer risk.  But, taking crappy care of your body, eating junky food, and generally being careless, puts you at a greater risk than if you are careful.

There is nothing we can do, especially those of us with genetic predispositions to cancer, to fully protect us.  But we can do what we can to help.

There is no guarantee I won’t get hit by a car, but if I stand in the middle of the street I greatly increase my chances.

People ask why we devote so much of our time, energy and budget into healthy food.

Genetics are not on our side.  But we can fill our bodies with healthy, pure, organic superfood.

These days the core of the nutrition in our home comes from Isagenix.  It does not claim to prevent, treat or cure any disease, but If you haven’t looked yet – now is a good time.

www.meghanleigh8903.isagenix.com
http://www.meghanleigh8903.isagenix.com

This company provides quality food, and they make it possible for you to afford it, because you can eat your Isagenix for free.

“You plus two, them plus two.”

you plus two

Well worth my initial investment.  Quality nutrition for my entire family.

We are certainly going to do the best we can at all times.

Our health, no guarantee.  But we are going to do the best we can to keep that “STUPID CANCER” away.

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…