The Waiting Place…

A quick Google search brings the definition below when the word “patience” is entered.
pa·tience
ˈpāSHəns/
noun
 
1. the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
I’ve been thinking a lot about patience these last few weeks.  It’s something we work on from a very young age, yet I’m not quite sure it can ever be attained in its purest form.  At least not by me.  Not if I’m honest.
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And I tend to be honest right here.  Which some might think is an odd place to make that choice, but that’s for another conversation.
We work on patience when we are young.  Waiting for play time.  Waiting for school to end.  Waiting for a party.  Waiting to get there.  Waiting for the game to finish. (Waiting at ‘the waiting place’ like Dr. Seuss in “Oh, the Places You’ll Go”)
We learn that patience will help us get things faster.  If we are patient our parents are more likely to bend.  If we do what we’re told and wait, things are more likely to go our way.  That ice cream cone has a better chance of landing in our hand if we’ve exercised patience than if we’ve badgered.
When we get a little older there are less overt rewards for patience, yet it’s still a necessary virtue to master.  Those without patience are deemed immature.  If we are overly demanding it endears us to no one.
patience 2
I know this.  I know all of this.  And generally I am a pretty patient person.  But, I must tell you I have thought long and hard about the amount of patience required to navigate Cowden’s Syndrome and its ramifications, and it seems to be an inordinate amount.
I get it.  I’ll say it a thousand times to anyone who will listen.  Of all the “rare disease” cards to draw, this is by far among the better ones.  I know of the suffering of so many who are diagnosed with torturous terminal diseases.  I know of so many who would trade places with us in an instant.
If the PTEN mutation causing Cowden Syndrome is found early, a lifetime of vigilance can often ensure longevity.
It’s just that with that vigilance, you need to much darn patience.  So with my gratitude, I sometimes battle frustration.  Which is ok.  Because I am human.
patience1-1
In the last 21 days I’ve been to Manhattan 4 times for doctor’s appointments, and another 2 to Long Island.  The average roundtrip for these appointments is about 5 hours.  5 hours to travel in insane traffic regardless of the hour.  To Manhattan the distance is only 13 miles and I can not tell you how many times 2 hours hasn’t been enough time to be on time.
But, I should never worry, because they are rarely, if ever on time.  And while I understand the myriad of reasons doctors run late, still the patience sometimes runs thin.  Especially when we are anticipating another traffic filled journey home.
The patience wanes when I call offices and 2 days lapse without returned calls.  I struggle when I have to spend hours explaining what test I need insurance authorization for, only to have the person speaking to me become hysterical with laughter, presumably because they are being told a joke.  I’m not against laughter.  I actually like it.  But, when I have to now cancel the test ordered by the doctor I never wanted to see in the first place, sometimes I just can’t find it funny.
patience 4
When I call for an appointment and I’m given a 3 month wait time.  And an appointment smack in the middle of the work day.  I lose patience.  I don’t expect special treatment.  And its a good thing I don’t.  But its sometimes hard to stay patient when you’re juggling over a dozen specialists (each) and a full-time job, and academic honors.
So in the summer I try to be even more patient.  But by default I have to get a lot of things done in the summer.  We are actively trying to shove in some fun, in between a boatload of appointments.  I try to squeeze in time in pockets of my day to regroup and relax.  I try not to cringe when my Facebook news feed is full of play dates and day trips.  Why shouldn’t it be?  I don’t WANT anyone else to have to sort through this mess.
Friday is Meghan’s second uterine biopsy.  PTEN mutations tend to cause most of their cancers, although not exclusively, in the thyroid, breast and uterus.  The fact that she hasn’t hit her 13th birthday yet, and this will be her 17th round of operating room, general anesthesia procedures is taxing.  But, we will be patient.  We will be patient tomorrow when we wait for the time of Friday’s procedure.  And we will be patient on Friday as there are often delays.  We know.

time concept, selective focus point, special toned photo f/x

We will be patient over the weekend as she adjusts to the discomfort and pain from the procedure.
We will be patient while we wait.  And wait.  For the critical pathology report.
We will be patient while she heals enough to return to the pool.  Her happy place.
Patiently we will continue to navigate the road of vigilance, peppered with mines that need to be avoided at all costs.
We will pretend, each time we meet a new doctor, that they are the most important.  We will not even try to explain the full complexity of the scheduling of life.  They have their own problems.  They don’t need to hear about ours.
When we each face our own lives we know the challenges presented to us.  I don’t want any of yours.  At least I understand the task at hand here.
I have gratitude that I am given the opportunity to allow my vigilance to matter.  I am patient.  Mostly.
pa·tience
ˈpāSHəns/
noun
1. the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
Usually I take a deep breath.  A bunch of times.  I’ve learned patience gets you farther.
So if some days are harder than others, I ask you to have patience.

#beatingcowdens can be exhausting.

persistence

“Lucky” Number 13

People count all sorts of things.  Among the things we count are surgeries.

Lucky13

 

Although the most recent ones have been predominantly knee related – 2011, 2012, 2012, 2013, 2014, 2015… we don’t forget the others that fit in.  And we don’t even try to talk about them without the three page cheat sheet detailing the most pressing medical information.  We don’t talk to over zealous residents without the 32 gig flash drive pulling up PDFs of old blood work and reports.  (Saved her another stick today when I could produce a recent normal liver enzyme panel!)

So today, surgery number 13, was not a surprise.  It was anticipated and planned very deliberately for months on end.

The day started before 5, scheduled for a 6 AM arrival.  But, in reality it started last night.  Bags were packed to include clothes, toiletries, snacks, electronics, chargers, and our shakes too.

We got up and out quickly.  No fanfare.  No time for a “selfie” of the three of us in our “Never Give Up” T-shirts.  We checked in just past 6 and shortly after were performing all the typical surgery routines.

It is funny.  There are two groups of people in my life- those who have similar numbers of surgeries to us, and the larger group – those who have had next to no surgeries.  The first group understands surgery “routines.”  The second group raises some eyebrows.  They are horrified at our use of the camera in the hospital.  But this is our reality, and I can pack for surgery as well as I can pack a carry on for vacation.

arrow through head

We were greeted in pre-op by about a half dozen people all asking exactly the same questions (even though they and I had the cheat sheet, we still had to play the question/ answer game.)  Several consent slips were tossed at me.  The anesthesiologist and Meghan made a deal involving the timing of the IV and the mask.  Felix was given the necessary garb to walk into the OR.  I stole a few extra minutes to clarify the plan with the orthopedist.

And I must confess there was some major anxiety.  See, the plan as I saw it was for her to have the AVM embolized while the orthopedist cleaned out and searched for the elusive “leak” in the artery.  That’s why we coordinated surgery times.  Except, as it was presented to me today – the vascular guy wasn’t touching the AVM unless it was absolutely necessary.  This was a far cry from the report after the MRI in January when we were told another embolization was necessary.  But, it was now in the moment.  They had a plan and I had to play along.  The orthopedist promised me the vascular guy would be there while he poked around at the beginning in case he was necessary.  He also promised me he would do his best.  What more was there to ask, I guess.

In the waiting room I thought.  Too much.  But, when I was just about insane with my thoughts, I let them wander to Ashton and Suzannah, and the number of hours involved in EACH of those procedures, and I tried to feel better.

After about three hours we were greeted by the orthopedist.  His words were varied, but included “not as bad as I expected,” “quarterized several spots that were leaking blood,” and, “cleaned out a good deal of scar tissue and debris.”  He gave us some pictures to see his work, and left us to meet up with Meghan in recovery.

She woke up slowly, but well, and soon she was alert.  While she spoke to her dad I fielded detailed questions from several more people who held the cheat sheet. I took out my copy and obliged them with answers.  She woke in the most terrible kind of pain, curtailed by a dose of morphine and some ice.  Lots of ice.  For Meghan.  And for me- as I managed to bang my head on the table.  Insert exhaustion here.

exhausted

The pediatrician on call was relentless reviewing the three sheet medical history.  Eventually we got our room, and some time around 2 we were greeted by friendly nurses, a nice bed, and some more pain meds.

Things were settling a bit until the “Inquisition” took place in the form of that previously mentioned pediatrician.  I have to tell you she succeeded on really aggravating my last nerve.  She actually handed me her copy of the “sheet” which had been copied to just about every department so she could ask me the same questions.  By now the fatigue was starting to set in.  I resented the implications that it was somehow my fault no one was “running” my daughter’s medical care but me.  I explained carefully that I was jaded by years of dealing with sub par medical professionals.  She did not take the hint and proceeded to contact my pediatrician to tell him she disagreed with one of Meghan’s medications.  Whatever…  Truly.  Spend some time learning about Cowden’s or ANY Rare Disease.  Then we’ll talk.

'I'll give it to you straight - This disease is almost IMPOSSIBLE to pronounce.'

Arrogant self- importance.  Ugh.

We were called down to radiology at 2:30 so the feet could be X-rayed.  The orthopedist believes, acknowledges, and is searching for an answer on the foot size discrepancy.  Results tomorrow.  In the mean time his caring makes him my current favorite.

Pain medications in place.  Crutches safely in the corner.  Lights are off.  Movie is on.  And the day is just about over.

cartoon-dog-holding-crutches-4589354

Tomorrow we SHOULD be home.

For now, number 13 is in the books.

thirteen

And my happiest news of the day came when the anesthesiologist said

my girl was “stable and strong” during surgery.

The little things are HUGE!

Thankful for the prayers and the guardian angels…

Tomorrow is a new day for BEATINGCOWDENS…

Now, we rest…

Passing time….

So here we sit.  Again.  For the second time post thyroidectomy, we are in the hospital. meg hospital May   The girl doesn’t feel well.  She just doesn’t.  End of story.  But, not too many people seem ready to listen until she’s in a full on physical crisis.  Even then sometimes the numbers are frighteningly low. Yesterday she knew.  She NEVER tells me to stay home from work.  She KNEW.  And my pediatrician heard it in my voice.  She was admitted soon after he saw her.  He wanted it to be the flu.  In some ways I did too.  A little Tamiflu and some rest.  Buts she’s negative for flu.  No real surprise.  Too simple a diagnosis for my girl. Since her surgery in February,  her TSH (Thyroid Stimulating Hormone) which is supposed to rest somewhere between 4. and 4.0 has been lingering well over 10, despite numerous medication adjustments. The TSH is supposed to be down regulated when the synthetic thyroid hormone takes the place of the T4 and T3.  Enough thyroid hormone and the TSH decreases.  Not enough and it increases causing hypo (under active) thyroid symptoms which can range from bone crushing fatigue, to generally feeling unwell and a whole host of issues in between. He medication has been adjusted upward with no effect – several times. I know it takes time.  I barely remember my own battle with thyroid hormones over 20 years ago.  The veterans of this surgery tell me 6 months, a year…  I get it.  I do. But then there is the reality of watching your kid feel crappy every day.  The reality of watching her FIGHT with all her might to do the normal things others take so easily for granted.  And then I get impatient. impatient smiley To complicate things it may not just be the thyroid hormones keeping us hopping. That “lymph node” turned “salivary gland” is now back to a lymph node in the neck.  We are awaiting the ultrasound that I feel should have been done with her appointment last Monday. And there is a fever.  She never gets fever.  Not really.  And yesterday it was 102.  Today around 100.  No answer why.  Not even the White Blood Cell Count gave a clear indicator. And the reflux.  Painful.  Like fire. Lack of desire to eat much of anything leads to weakness. fire And the throat clearing.  Reflux? or lymph node? or something totally different? So we temporarily stopped the celebrex to try to solve the GI issues.  The medical equivalent of robbing Peter to pay Paul.  The joint pain – managed for now – is rearing its head. And why does a 10-year-old, with no gall bladder and a week of the worst reflux of her life – with no dietary changes – begin vomiting bile? Maybe just maybe we will meet up with a decent GI.  Girls can hope. So I sit.  We sit.  Waiting for answers to questions.  Waiting for answers to more questions than we will ever get.  But we are hopeful.  Anxious. At least right this minute the worst part of being here is passing the time with the stupid IV.

They got it the second time!
They got it the second time!

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.

more-than-50000-views

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.

patience-buddha1-300x248

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.

migraine1

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!

Tick Tock

wagner-college

I actually watched it happen.  We were walking up the hill to swim practice last night.  Then she was limping.

She handed me her bag – struggling to balance.  Before I could ask what had happened…

“My hip, my groin, the whole thing!”  Gesturing near her hip bone and down her outer thigh.

I looked for a bench but there was none.  She wasn’t interested anyway.

“We can’t sit – I will be late for practice!”  Exasperated that I would even think she should stop walking while writhing in pain.

“Um, Meg – I was thinking you shouldn’t go to practice.”

“No way!  We are here.  I am going, and besides- the only time I feel close to normal, like everyone else – is in the water.”

almost_normal_01

We took away soccer.

We took away dance.

We can’t take away swimming.

Spring 2013
Spring 2013

So I made sure she asked her coach to help her stretch the hip.  She stopped only once during the hour and fifteen minutes.  I am sure I could not have kept up.

As I walked, and she limped back to the car she said it was, “not so bad.”  And, she was “glad” she practiced.

Dedication.  Admirable.  Torture.

After the shower it all fell apart quickly.  She froze almost completely. We rubbed it, and elevated it.  Within an hour she needed help walking.

She got settled into our bed and tried to rub her hip.

The yelp indicated the pain on her hand and wrist has not subsided either.

As we got her comfortable I thought forward, about the week to come.

I emailed her genetecist and her oncologist this week.  I attached photos of her hand.  I attached the copies of the MRI report.  They responded inside of a few hours.

Biopsy those lesions.  On this they agreed.  Cowden’s Syndrome -PTEN Hamartoma Tumor Syndrome.  Soft tissue tumors are common.  The oncologist reminded me only one lesion was visible during her exam just 2 weeks ago.

I know.  I watched the other one pop out as she cried out in pain during a shopping trip to Kohl’s.  It wasn’t there.  Then it was.  Now it is.  And it hurts too.

Tuesday we will see an orthopedist.  Thursday we will see a hand surgeon.  Two more doctors we didn’t plan for.  Two more afternoons lost waiting.  Two more opinions to contend with.

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And the prevailing uncertainty that anyone will ever fix the problem.

She is walking a bit better tonight.  That is encouraging.  A nice afternoon with a friend.  Conversation for me was easy and comfortable.  Grown up talk – something I have craved, while the children swam in the pool.  Almost normal for a few hours there.  Almost.

The car is going to stay in the “car doctor” over the weekend.  Apparently its condition has been downgraded.

Paperwork to begin a complaint with Better Business Bureau should arrive early next week.

Maybe I should give the CAR an ISAGENIX shake or meal bar.  It might be more productive than what is being done to it.

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

Monday we should know more.

Monday we should also hear from the rheumatologist about her thoughts on the MRI.

Sandwiched in between concerns about family and friends alike.  In some ways our lives are miles different.  In more ways – they are exactly alike.

Patience.  Worry.  Anxiety.

Tick Tock, Tick Tock… that would be the sound of summer passing us by….

run-clock

Patience and Wisdom

I am patient – sometimes.

I am also wise – sometimes.

The trick really might be meshing the two.

patience and wisdomThat’s where I sometimes have some trouble.

I got a call this morning from Dr. S.  The biopsy is scheduled for Tuesday at 12:45.  Pleased to have it scheduled, quick math told me it would still be a week before we had  a definitive answer.  But at least I had the wisdom to shut my mouth and be grateful to have it scheduled.

My next question was about anesthesia.  Had they decided to give it?  In FNA (Fine Needle Aspiration) thyroid biopsies, anything more than a numbing lotion is uncommon.  But Meghan had such TRAUMA from her FNA at  another hospital in November of 2011. We had to push.

I had just told this child she could have cancer.  I just told her she was likely looking at another surgery.  She was unaffected.  “I will have whatever surgery I need to.  Just make sure I don’t have to be awake when they put those needles in my neck!”

This is the burn the cold spray that was supposed to numb her left on her neck in Nov. 2011.
This is the burn the cold spray that was supposed to numb her left on her neck in Nov. 2011.

All day I carry my phone everywhere.  I literally put it down for 3 minutes and missed the call about the anesthesia.  So the voicemail said, “We need Meghan at the hospital at 9AM tomorrow (Friday) to clear her for anesthesia.”

“When?  What type?  Why?  I can get you a cardiologist report from December.  I can be to my pediatrician in 30 minutes, and you just took blood on the 27th.”

“No, we have to see her here at 9Am.”

Patience and Wisdom.

I had pleaded for the anesthesia on her behalf.  Now I would pay the price.  Very careful not to take days off after my attendance debacle last year – I guess I will be at Sloan tomorrow,  ensuring the anesthesia my kid asked for is in place.  She doesn’t ask for much.
PatienceWorking hard on gratitude, I am relieved at least things are moving.  Not on my schedule, but progress nonetheless.

So then my oncologists office called.  They want me to see the surgeon.  The surgeon we first talked about a month ago.  The surgeon who had little more information than he had on December 7th after my MRI.  The surgeon who insisted he needed the sonogram, but whose system at the hospital cannot upload it.  No one thought to send me for another abdominal sono at their hospital – even though I asked.  They would like me to see this surgeon at 10:30 Weds.  They will have to have patience now.  I have a kid to take care of first.  If they were in such a rush I could have been healed by now.

So I am waiting still to hear from my car insurance carrier who somewhere in the midst of all this chaos decided I was totally responsible for the accident where I suffered a DIRECT HIT from a car who took no action to avoid me.  Waiting to hear exactly who that letter of appeal gets addressed to.

All of these things that keep happening, keep me from seeing my Grandparents as often as I would like to.  My heart weighs heavy.  Time and stress are hard to manage.

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Patience, I am convinced – is more than a virtue.  It is down right necessary, and almost debilitating with exhaustion.

Patience for me is hearing, “It is likely your child has cancer,” and then WAITING to take care of it.

I get that in the scheme of things thyroid cancer grows slowly, and 2 weeks won’t make or break things. But this is my little girl we are talking about.  May God bless me with the patience to get through the weekend.

hand ove rmouth

And give me WISDOM with that PATIENCE too please?
And give me WISDOM with that PATIENCE too please?

The Carousel of Life

How can you tell if it’s really progress?
When we were in Walt Disney World, one of the rides we went on was “The Carousel of Progress.”  Now I must admit this isn’t one of my all time favorites, but it does serve to cool you on a hot August day, and provide some food for thought.

For those of you who have never been, it starts out in the early 1900s and has several scenes detailing progress through the years.  Of course, with all progress, there are a few snags along the way.

The state of the art kitchen in the mid 1900s, looks nothing like the state of the art kitchen in the 21st century.

 

 

 

 

 

 

And I think the lesson to be learned by those of us cooling off in the comfortable Air conditioning, is that with every new change, we lose a bit of the old.  It is often beneficial, and frequently necessary to improve, but we need to keep an eye to where we have come from so we don’t lose ourselves.

So why was this on my mind – aside from sorting out the Disney Photos?  Today was a doctor day  – again.

Today we took a 2.5 hour (should have been 75 minutes) road trip to Long Island to see Dr. E.  People ask me all the time who he is, and why we see him.  Well, the truth is, he is kind of our “think outside the box” doctor.

We first met him in 2005.  Meghan was severely delayed in many areas.  Her behavior was at times scary, as she was having fits of rage that were tough to manage.  She was bloated, and her belly was in terrible shape.  She wasn’t speaking much, and her speech and occupational therapists were starting to whisper “autism” to me.

Not feeling at all like that was where she was, we headed to see Dr. E, a DAN! (Defeat Autism Now!) practitioner.  He had been a pediatrician for over 20 years and had recently made the change to treating children with biomedical interventions.

It was a scary commitment to see such a doctor.  There was no insurance at all, and the initial out of pocket fees were frightening.  But when we sat and spoke with him, and he told us about the ways he was going to help Meghan – he meant it. 

It is 7 years later.  My daughter is a far cry from that sensory sensitive, sickly, silent, little girl we brought him in 2005.  We have gone through countless lab tests, various diets, vitamin and mineral supplements, prescription and non prescription medication.  He has seen us through her gall bladder attacks, and has answered my texts and Emails at the most obscene hours.

Progress.  At a cost.

Not just a financial cost, but an emotional one too.  And now we hit a crossroads again.  Progress is at a standstill in many ways.  (Not in the bright, articulate, funny girl, but in other ways people don’t see.)  The strep is returning to life on a regular basis.  Her development is not agreeing with her hormone tests.  Her belly bothers her, and she needs medicine to help her sleep.

I spoke with him at length today.  He wants me to see a very intelligent nutritionist in NJ for a very specific test.  It will uncover some of the “mysteries” we are missing, he says.  We are past the point where we can look at her and treat her.  She appears well, but there are too many things that don’t make sense.

What about the Cowden’s I ask?  What about the PTEN?  Isn’t that the cause?

To which he gives me the honest, “I don’t know.  There isn’t enough research.” 

But, he insists what he does know, is that we will gain a wealth of information from this test.

It is costly, and there is no guarantee the insurance will cover it.  But, she is worth it, and we will likely set it up.  The question is when?

School starts in a week and a half.  I have 2 appointments tomorrow, she has 2 Monday, and another Weds.  There comes a point where we have to stop running like this.

The Carousel in Ocean City, NJ

When I was a little girl we vacationed in Ocean City New Jersey.  I used to like the carousel, but I wasn’t as daring as my sister – who would lean over and reach out for the rings.  I liked to hold on – tightly.

Some things haven’t changed.

I think about this carousel as well, moving in circles, sometimes seeming to get nowhere.

I find all these appointments all consuming, almost overwhelming.

Then I stop and think – it’s not about getting there, it’s about enjoying the ride.

Progress will come…