The Productive Struggle

Tomorrow I was scheduled to attend a professional development workshop entitled “The Productive Struggle.”  I was kind of excited to go, as it sounded like quality PD right up my alley.  “The Productive Struggle” is supposed to focus on helping students find their way through the rigorous problems and questions of the Common Core Learning Standards (CCLS.)  And regardless of your opinion on standardized testing, when you break down the basic principles of these standards to their center, there is much value, and much to learn.

As a math teacher I like to focus on having students “Persevere to solve problems.”

productive struggle 3

This is in no way as easy as it sounds.  Children are programmed to wait.  They want the “right” answer.  They fear trying and making mistakes, and learning, and trying again.

As a teacher it is my job to give them the skills they need to solve problems.  I need to make sure their knowledge of math is broad.  I need to tap off the skills their classroom teachers have taught.  I need to set firm boundaries and standards for not giving up.  Then I need to step back and let it happen.

Some days it is like a well rehearsed symphony.  And other days it sounds a bit like an early childhood music class.  But I try, and try again, and we make progress.  Because giving up is not an option.

I have had some time to think, being cooped up here in the hospital this last week.  And tonight it is easy to understand while I am glad to be by my daughter’s side, I am sad to miss any lesson in the “productive struggle.”

productive struggle 2

In many ways it is what is missing in our lives as patients with Rare Diseases.

Follow my logic, using my Meghan as an example.

So Thursday she woke up vomiting bile, and in tons of pain.

Virus?  Nope.

Flu?  Nope.

Terrible reflux, awful stomach cramps.

Appendix? Nope.

Fever, back pain.

Kidneys? Nope.

productive struggle

And so it continued, and still continues.  We have met many nice, well intention-ed doctors and residents.  And we have met a few that should really use their intelligence to become researchers and stay far away from people.

But 5 days later my daughter still sits with stomach pain, difficulty eating, and some pretty significant GI issues.

We have had ultrasound, CT scan, and countless lab tests.  Tomorrow she will have endoscopy at 2 PM.

Some of the medication changes have been beneficial.  And we may see a slight decrease in the severity of her pain tonight.

But, what is the root of the problem?

She didn’t develop GI issues so severe they require a lengthy hospital stay without there being any connection to the rest of her body.

I have a 4 inch thick binder with medical history.  It reads as a chronology of 11 surgeries, several hospitalizations, outpatient procedures and more.  There is lab work, sonograms, MRI reports.  I actively cataloged the whole thing by date.  And I brought it.  And I offered it to the doctors.

And then I took it home.  No one even laughed at the cartoon on the cover.  I’m not sure it was ever opened.

binder cover

See the problem we have, Meghan and I, and so many others, transcends Cowden’s Syndrome.

The problem is that most practicing doctors have never encountered, experienced, or worked through the “Productive Struggle.”  So when a tough case hits them – they only do what they would normally do.  And when all those tests are fruitless, instead of thinking outside the box – they assume OUR box is broken.

Meghan and I went through the chronology of the last year together last night.  We spoke about the AVM on her hand.  We continued through the MRIs that exposed her to extreme amounts of gadolinium.  We talked about the two rounds of heavy metal chelation, and how even though she excreted significant heavy metal, the rebound effect triggered crippling migraine headaches.  We recalled the neurologist, and the instant diagnosis of migraine without much history, touting them as “very common.”  We remembered another MRI to make sure the brain was clear.  We talked about the medicine for the migraines and whether it really worked, and how it kept getting raised every time she had another headache.  Raised, not changed.  We talked about the tickle in her throat that started in November, and the neurologist’s flippant remark that it might “just be a tic.”  We talked about the neurologist telling us to increase the Celebrex to stop her last migraine – which it did, but it was never his drug to change to begin with and he never consulted the prescribing doctor.  We talked about the thyroid nodule, and the subsequent biopsy and thyroidectomy.  We talked about the surgery and the hospitalization that followed with GI issues in February.  We spoke about the throat clearing “tic?” that we had hoped would resolve after the thyroidectomy.  Then we spoke about thyroid hormones, and what having a body in a hypothyroid state for months can do.  We spoke about the ENT and his determination that there was inflammation in the nose.  We discussed his nasal spray and admonition to double the reflux medicine.

And then, after ten minutes of talking out the medical highlights of the last 10 months we realized NO ONE had asked about any of that.

It was like she is here being treated for a totally separate problem as a kid who “happens to have” Cowden’s Syndrome.

So they order their tests.  One at a time.  And they watch and wait.  And we go for ultrasound and CT scan.  And we change-up some medications.

But no one asks what the effects will be of her stopping Celebrex.  No one asks why her body required such a dose, even as I start to see the initial effects of the NSAIDs  being totally our of her system.

They come in and tap her belly.  It still hurts in the same spots.  But that’s not what they want.  They did what they know.  Now they want it to be better.

I have to be here with Meghan tomorrow, but there are a few of them that could stand to attend the PD on the “Productive Struggle.”

Goodness, work for it people.  It’s not always easy.

But she’s young.  And she’s bright.  And she’s frightened.  And she’s worth it.

You Never Know How Strong You Are Until Being Strong Is The Only Choice You Have

 

Overwhelmed

overwhlemed 1

Yep.  Totally and completely overwhelmed.

I know I am not the only one.  But I think sometimes the first step is admitting it.

Maybe it was overzealous to try to synchronize mine and Meghan’s 6 month follow-up appointments to coincide with the first 2 weeks in July and the February break.

My initial attempt scheduled 12 doctors , plus one MRI and one sonogram between June 27th and July 16th, (for both of us combined.)

overwhelmed 2

It has mushroomed to include a Pituitary Stimulation Test and another ultrasound, 2 more MRIs yet to be scheduled, a possible muscle biopsy – pending a conversation between 2 specialists, a full day of work for me one day next week, Physical therapy 1-2x a week as we can fit it, 3 nights a week of swim practice, and 2 dentist appointments (that I PRAY don’t need follow-up!)

So, I waffle in between resenting the loss of my summer, and being grateful that I have July to get all this done.

The entire month of June I salivated for July.  I couldn’t wait for schedule free days.  Now I am frantically overtaxing my shredder as I organize all the tasks I label for “summer,” during the year.  The July calendar makes me nauseous.  Literally.

swim overcome

I mean we might have gotten bored eventually, but we have barely been near the pool.  I say bring on the boredom.

Most of our appointments are in Manhattan.  That can be a 45 minute trip or a 2.5 hour trip – depending on… well, the humidity?  day of the week?  air pressure?  There is ABSOLUTELY no predicting.

We could take the bus.  But that often involves the need for the subway, which I won’t do with Meghan, and lots of walking, which honestly she can’t do.  So, we drive, fill the car with gas, head over a bridge and through a tunnel to a carefully pre-selected parking garage.

And, since there is no predicting, there is always a meal to pack.  Never want to be caught off guard with a hungry Gluten, Dairy, Soy allergic kid.

Sometimes we are on time.  Sometimes we are late.  Always we wait, and wait.

overwhelmed 3

Meghan is the most well-behaved child.  I don’t lie because there is no need.  I am sure she was a gift to me – while we can at times butt heads, her personality allows her to pack a book, her iPad, or something, and sit.  For hours and hours.  I couldn’t pull this off if she was any other way.

But, I don’t know if I would have a choice.  There is no traveling to Manhattan at 4 pm, on a school night.  It just can’t be for either of us.  So we do what we must.

Today, before 8AM she was in the park, running the “fun run” of a local race that has been dedicated to our “Angel Meghan” for over 20 years.  She ran for a quarter-mile – 2 and a half minutes, came in a close 2nd, and has been nursing her knees ever since.

Meghan july413

I am in the basement, shredding, and writing while I wait for my overworked shredder to cool.  Trying to get a few things off the “to do” list.

My head is constantly going – processing new information learned this week.  Thinking.  Asking.  Wondering.  Worrying.

Today is a good day.  Daddy is home.  The ultimate distraction for her.

We had a long talk this morning, me and my girl.  I tried to push her to reach out to some friends.  To go and be carefree like she should be.  Even if its only for a while.  Everyone has something we reminded each other.

I still can’t shake my need for order.  I don’t need a psychiatrist to tell me my obsession with a clean house is tied to the inability to control much else in my life.

Cowden’s Syndrome – our curse, and our blessing.  Sucking away hours that should be spent on the beach or in camp.  Forcing a little love to grow up way too fast.  Torn between my guilt that this mutation came from me, and my gratitude that she saved my life.

I lost my driver’s license today.  Just the license.  It fell out of my pocket.  For $17.50 I ordered a new one on-line.  Here’s to hoping that whoever tries to be me has a strong stomach, and a decent amount of stamina.  They don’t know what they are up against.

overwhelmed 4

The beach… and all her other plans – I will do my best.

Just trying to get by one day at a time.

This one is a favorite of a dear internet friend :-)
This one is a favorite of a dear internet friend 🙂
The thought for the day...
The thought for the day…

JUNE!

It’s June.  It doesn’t feel like it.  At least the weather doesn’t.  It’s cool and rainy.  I guess that’s OK for now – while we are still wrapping up school.

It has been a long week.

I don’t usually leave my blog unattended for so long.  I am behind at writing.  I am behind even further at my reading.  It seems the days just blend together lately.

It is June, and when you are a school teacher, this is a month of eager anticipation, and volumes of paperwork to be settled. There are boxes to back and things to carefully put away in preparation for the fall.  There isn’t much time to be still.

schools out

Well – in another 2 weeks it is!

It’s June, and when you are an advocate – you do take a few minutes to celebrate the victory that put speed bumps on the street where you had the accident that damaged your back forever and ever.  You are grateful for the citizens, and politicians alike that fought relentlessly.  You are thrilled by speed bumps, but you still want that stop sign.  You celebrate with a glass of wine – or two.

crash

It’s June though, which means that damaged back has to ache longer in between trips to the chiropractor, and the PT you promised yourself seems like it may never happen.   You are the mother.  You will get by.

It’s June and when you are a Mom of a kid with Cowden’s Syndrome you spend 2 or three afternoons a week at physical therapy to make her chronic pain bearable.  Not totally sure the pain is related to the Cowden’s, but sure it’s related to SOMETHING, you scoff at the denial for school based PT and wonder what they would say if one of them could spend a morning in your house watching your 9 year old walk like she’s 90.  You balance those PT appointments with swimming lessons, all in preparation for the team she will join.  The team she is desperate to swim on successfully, and God willing – pain free.

competition_pools

It’s June, so you balance the breakthrough of the virus on that adorable immune compromised 9 year old’s face with increased doses of the antiviral medicine and extra trips to the pediatrician.  It’s June so when it’s not pouring – you make sure she has a hat to keep the sun off her face.  And when you look at the dose of antiviral medicine you start to feel a bit guilty, nervous maybe, about her liver – and all the prescription medicine.  So, you take a chance and toss the Celebrex to the side.  Hoping maybe, just maybe she can get by without it.

celebrex100mg

It’s June and its raining.  You feel a little guilty about “forgetting” to tell her you stopped the Celebrex, but each day you hear the complaint of another joint, another ache, another pain.  Ten days later you abandon your hopes of relieving the stress on that young liver, and you relent. Too many Tylenol – not cutting it.   Celebrex it is.

The war rages – all the months.  The battles are won and lost on a regular basis – but the war looms large.  I don my armor – a large binder of medical facts, bloodwork, and reports.  I gather my inner strength.

It’s June.  Summer vacation is coming, but there will be no camp in our house.  It doesn’t fit in with the schedule.

calendar

Every six months.  Every doctor.  Forever.  Mine, and hers.  Different doctors.  Different times.  Different facilities.

I am getting better at the scheduling.  I have learned to bunch them together.  So, we go in February and again in July.

For Meghan it’s the thyroid first.  That foreboding nemesis.  Ultrasound, appointment… and we will see what comes next. Then its the AVM follow up, and the genetecist.  That’s just the last week in June.

Mom has an MRI to schedule to look at that spleen, some more surgical follow ups…

There will be 15 appointments before the 2nd week in July.  That’s if every one goes well.

This is how it has to be.  We have to work, she has school.  We can’t have the appointments all throughout the year, so we must endure them all at once.

It’s June.  I am already tired.  Wrapping up one full time job to focus on another. I feel my anxiety rising.

Getting all my rest.  Gathering my inner strength.  Armed and ready.  Kicking Cowden’s to the curb…

We can… WE WILL!

keep swimming

“If I get to keep my spleen…”

As I sat in the dentist’s chair a few weeks ago getting another bridge organized, I enjoyed pleasant conversation with my dentist.  I know, that may sound strange, but really she is quite pleasant, and very talented at what she does.  She is also the Mom to twin friends of Meghan‘s from her class, so we have known each other over 4 years now.   She is a mom, wife, dentist, photographer, fellow blogger, volunteer, and a generally nice person to be around.  I am grateful to call her a friend.

As I was getting ready to go she asked me when she could schedule me for scaling and root planing.  After I had her explain the depth of the cleaning that was involved, and even after she explained WHY it was a good idea, my instinctive answer was , “NEVER!”

English: 29px Sharp top of a periodontal scale...
English: 29px Sharp top of a periodontal scaler Deutsch: 27px Scharfe Arbeitsspitze eines Scalers (Photo credit: Wikipedia)

Over the last 6 months alone I have had breast cancer, a double mastectomy, with reconstruction,  and a hysterectomy.  I have been scanned, had countless MRIs, and just recently completed a colonoscopy/endoscopy.  To say I am DONE being poked and prodded would be the understatement of the year.

So, as I listened to her careful list of reasons why this scaling and root planing procedure is a good idea, I just wasn’t sold on the concept of ANY more pain.

I told her, “When they tell me I can keep my spleen, then I will make the appointment.”  She laughed out loud.  But this, this is what life with Cowden’s Syndrome has become.  I am willing to celebrate being allowed to keep one of my organs, with a dental procedure that is probably quite necessary anway.

But, I feel like life in this body is about triage.  I have to take care of things one step at a time.

Traube's space
Traube’s space (Photo credit: Wikipedia)

So, the oncologist called today about my spleen.  They were comparing the ultrasound pictures from April on 2012, and November of 2011 with an MRI in August 2012.  She sent it to a lot of people to look at.  The answer..maybe.

Really, are you surprised?

You see the ultrasounds showed identical, medium size “hamartoma.” (PTEN  Hamartoma Tumor Syndrome is the umbrella term for Cowden’s and several other related Syndromes)  But, the MRI showed 2 distinct, and one fairly large “hamartoma.”  The good news about these is they are benign.  The problem is – if they follow the body’s tendency to grow and grow things, they won’t be able to stay there too long.

I know, you can live without a spleen.  You can live without a uterus, ovaries, a cervix, breasts, and a whole host of other things.  But, just because you CAN do something, doesn’t mean you SHOULD.

So, I will go back in December and repeat the MRI.  While they are there they can make sure the tiny cyst on my kidney stayed tiny too.

As soon as they are done.  Once they tell me it is all stable, and I can keep my spleen.  I promise, I will be a big girl and get my scaling and root planing done.

At least I have a kind, gentle and pleasant dentist – and she is looking to keep things IN, not take them out!

You can read more from my friend Gracelyn at : http://blog.silive.com/gracelyns_chronicles/2012/09/gracelyns_50_random_thoughts_o.html?fb_action_ids=3988683720816&fb_action_types=og.recommends&fb_source=timeline_og&action_object_map={%223988683720816%22%3A431582393573191}&action_type_map={%223988683720816%22%3A%22og.recommends%22}&action_ref_map=[]

AND: http://gracelynsantoschronicles.blogspot.com/