Normal People Stuff

Two weeks of as much rest as I can possibly stand.

The trouble with having a rare disease, as I’ve said so many times before, is that you ALSO have real life.  You ALSO have “normal people stuff.”

After that early January fall, I was quite consumed with my shoulder, and pretty bothered by the flippant attitude of my breast surgeon.  All of which still stew inside of me as the real possibilities of breast implant associated illnesses are all over the news this week.

Just one of the many stories this week outlining a possibility. That’s where it begins. With someone saying it “could” be. 

And then there was the new endocrinologist on March 12th.  It was a backwards progression of sorts.  A referral from the surgeon who has been following me since my PTEN diagnosis.  I never really settled into a new endocrinologist after I disagreed with my long standing one in 1998.  He was bothered by my questions.  I bounced in and out of a few.  I found them mostly arrogant and out of touch.  I held with one during my pregnancy in 2003, but ditched him soon after my C-section.  I had a primary running bloodwork, and I was guiding treatment based on my labs until the Cowden’s Syndrome surfaced.

At that point I was handed off to an endocrine surgeon.  The possibility that the half of my thyroid which remained after a partial thryoidectomy in 1993 could fall into the 35% lifetime risk of thyroid cancer that comes along with a PTEN mutation was real.  We agreed on annual follow-ups using the ultrasound in her office.  All was smooth until February 26th, when she saw some calcifications on the ultrasound.  She got spooked and wanted a “fresh pair of eyes.”  She referred me to an endocrinologist in her hospital.

He sent me for a “proper” ultrasound before my appointment.  He then, with some promising knowledge of what a “Cowden’s” thyroid looks like, went through the images from the exam.  He told me that there were some potentially concerning features, but nothing that appeared urgent.  He questioned why I had not been using the formal ultrasound at the hospital, as there was now no baseline to compare it to.  In another episode of wondering why I don’t ask enough questions about my own care, I had to let it pass…

He told me the radiologist would read the ultrasound with more concern than he did.  He was right.  So there will be another ultrasound in August.  We’ll talk about the status of that right thyroid lobe then.  In the mean time he offered me a change of medication that in 30 years on Synthroid no doctor has ever entertained.  Monday I will begin a lower dose of Synthroid combined with a twice a day dose of T3, liothyronine, in hopes that I might get some of my sought after energy back.  With a standing order every 3 weeks to monitor blood levels, at this point, I have nothing to lose.

So back in circle to the “normal people stuff” intertwined in this balancing act.   April 18th is still the earliest day to contend with the chronic ear pain and fluid I’ve been handling since September.  It doesn’t matter that it has headed into my mouth and is bothering my teeth.  That it is somehow messing with the nerves so badly that I ended up with a root canal specialist yesterday.  Of course, she won’t touch the painful tooth because no one can know exactly what is in my ear.  Pain management.  Maybe it’s Cowden’s.  Maybe it’s allergies.  Maybe it’s simple.  Maybe it isn’t.

And then there is that foot. Snagged on a kids chair in a third grade classroom in the middle of teaching a lesson.  It knocked me on the floor.  I was so worried about the shoulder, and the breast implant that I ignored the foot.  At least I tried to.

About 2 weeks after the fall I saw my primary and asked for help.  She suggested an MRI.  GHI promptly denied the MRI and told me to ice and elevate as much as I could, and reevaluate in 6 weeks.  I was left with no choice but to continue a job that kept me more hours on my feet than off.  By March 6th I couldn’t take the pain anymore and headed to a podiatrist.  He evaluated the foot, ordered Xrays, and got them read within hours.  By the next day he had the MRI approved and I went in for the exam.  About 72 hours later I got a call asking me to come in to discuss the results.

That’s never an actual good sign.

So when I walked into the office in two sneakers, I kind of suspected that I wasn’t going to leave in both of them.  And I was right.

MRI revealed a partial tear of the lisfranc ligament in the left foot.  Apparently this is an incredibly rare injury, (insert shock and surprise here) that the podiatrist anticipated before the MRI.  Apparently you can only get this injury through a twist and fall, you know, like catching it on a student’s chair mid-step.

I got a soft cast, and a giant walking book.  I got pulled out of work for at least two weeks, with no idea when the good people who review these cases will approve this as the clear work-related injury it is.

I have another appointment with the podiatrist tomorrow.

There is State testing at work this week. I’m always there for testing.

But right now I’m actually testing my inner strength.  Resting my foot.

I’m preparing for my clearance to return to work.  I’m preparing for my ENT appointment.  I am preparing to get my ear fixed.  I am preparing to get ready to lose the other half of my thryoid.  I am preparing for another plastics consult…

And all the preparing in the world won’t matter.  Because life will come in the order it wants.  That is the lesson for Cowden’s Syndrome and real life…

The dog hair and I will be here until then….

#beatingcowdens

 

You Can’t Have a Rainbow Without a Little Rain

rainbow rain

As a young child a can remember hearing stories of rainbows in Sunday School.

This week I needed lots of reminders that I am not alone.  God keeps His promises.

Yesterday we saw Endocrinology at MSKCC in NYC.  They spent an hour and ten minutes preforming a detailed sonogram of Meghan’s thyroid.  She was an angel – calm and patient.  I watched the whole thing, uncomfortable with how much I am able to see on an ultrasound now.  The things we learn through repetition.

It was obvious to me that the many nodules – well over 10 – are still there.  At least three are quite large.  I watched as they were measured, and my “numbers” brain frantically tried to recall the stats from December that had led us to January’s biopsy.

We spent an hour waiting on the ninth floor, the pediatric cancer unit.  And as I have said before, and I will say again, if you ever need to count your blessings, I mean truly count them, I strongly suggest you swing by there.

rainbow not thunderstorm

Meghan played on her iPad as I watched.  Chemo pumps beeping.  Children from 2 to 20, some seasoned veterans, some terrified newcomers, attached as the poison to kill the evil cells drips into their body.  Some sleeping, some resting, some running.  And their parents. Dark eyes.  Worry.  Terror.  Fake smiles.  Bitten up coffee cups.  “Count your many blessings count them one by one…”

“Mom, I am not scared of thyroid cancer.  I am only scared if they don’t catch it early enough.”  I knew what she meant. She went back to playing.

In the doctor’s office there was a moment for us to be relieved, kind of.  The nodules are slightly larger, but are growing slowly.  They are still in that same “precancerous” state, but we are not in imminent danger.  No biopsy right now.  We get at  least another 6 months out of the thyroid.

Then there were the other conversations.  The ones about hormone levels that won’t regulate on lab work.  The MRI that showed a pituitary “diminutive in size.”  The inconsistencies of these tests with her current development.  The statement from the endocrinologist that this lab test (having already been repeated 4 times,) “defies human physiology.”

Yeah, and…

So he drew the labs again.  This time at “his” lab.  And a thyroid panel, and a few other things.

He’ll call me Monday.  Then I will find out more about “human physiology.”

At swim practice last night I met a mom.  She has an only child too, just about Meghan’s age.  And she is BRCA positive. So, after a day of doctors, somehow we were placed in each other’s path last night.  And, I had conversations with a virtual stranger that I probably haven’t had with some of my closest friends.  There are no coincidences.  Of this I am sure.

And this morning – barely able to move from stress and fatigue, salivating for a day of “vacation,”  we dragged ourselves out of bed again.

rainbow snoopy

I packed the bags – always bringing lunch and a few snacks, and we headed out – a little later than I wanted.  As I crossed the bridge I had the sinking feeling that I didn’t have my wallet.  Back across the bridge.  Back home.  Back out.  An accident on the FDR assured me that I couldn’t use the $14 parking coupon I had printed.  Into the $42 lot we went. We made it into the office at 10:03.

The vascular surgeon is uptown.  He has been inside of Meghan’s knee 4 times, so he knows her well.  This time we had less overall pain to report.  But, of course he never felt the pain was connected to the AVM anyway.  So I recounted tales from her PT evaluator, and her swim instructor about how difficult it is for her to run without limping, or to push off to start a race from the block  I had his attention.  The legs have different girth.  The left is undoubtedly stronger then the right, having been spared the AVM.  Do you take her for PT he asked?  Um… constantly.

Fortunately we love Dr. Jill!

We took her out of soccer and dance and put her in swimming.  There isn’t much else we can do.

Oh, and could you look at her wrist?  The one she hurt at the school carnival almost 4 weeks ago.  She was victorious at her quest to climb the rock wall.  Stubborn, competitive child.  But has paid the price since.

For a few days I told her to suck it up.  I admit it.  But it kept going.  Knowing Meghan as I do, she will keep me abreast of every pain – but the SECOND it stops, its like it never happened.  This one wasn’t quitting.  Dr. Jill helped us.  We tried a brace. Then another one.  Then no brace.  No better.

So as I watched the doctor manipulate her wrist I couldn’t help but remember my frustration the day after the carnival, when all of her friends walked around unscathed, and she suffered terribly with pain all over.  I remember thinking how cruel it was that she had to make a conscious decision to suffer in agony the next day – if she wanted to keep up with her friends.

He examined it for what seemed like forever.  Then he asked me who my orthopedist was.  I laughed out loud.  The one subspecialty we have NOT found – is pediatric orthopedics.  So he asked if she had a rheumatologist.  I said we were headed there July 9th.  He said try to move it up, and call him after I saw her.  She needs and MRI of that wrist.

“I don’t think it’s vascular…”  And after that we will get one of the knee – just to be safe.

There went two more days off the summer calendar.

40 blocks away was the geneticist.  He is the one we credit with saving my life.  And I credit the angels with placing him in our path two years ago.

We spoke at length.  He has more questions.  More research.  He has a theory.  He will call me.  He will send me the articles.  The conversation lasted an hour.  He is brilliant.

She hugged him and told him she wants to be a geneticist.  We have a friend for life.

The people training on the  new teacher evaluation system in NYC frequently declare “This is going to create more questions than answers.”  I don’t know why I find the system to be perplexing.  I should be used to it by now.

It rained tonight.  Thundershowers.  They have been happening a lot lately.  Maybe I need a lot of reminding.  The rainbows are there.  The promise remains.  Nothing happens by accident.  God’s timing is perfect.

6/28/13
6/28/13

Forever- it’s all about perspective!

Even new beginnings start to become normal occurrences, and things begin to wind their way into the much anticipated summer vacation.  New beginnings can’t stay new forever, and as the school year comes to a close we have spent some time reflecting on the twists and turns that caused it to end much differently than it began.

Schoolbooks

Meghan finished fourth grade with her normal grace and poise – and I am sure good grades. (Report cards are given tomorrow.)  Although she finished the year alongside different students, and in a different building then when she began, she finished with the same bright smile and cheery, friendly personality, that quickly endeared her to the young and old in her new environment.

There are some people she misses from her old school.  There are some people I miss.  There are circumstances neither of us miss at all.

This wasn’t the plan.  But really, as I keep learning – we don’t actually get to plan everything.

Learning experiences.   That’s what they are.

positive attitude

You never really know what tomorrow will bring.

Make the most of what you have where you are.

Trust your heart and your gut.  If it feels broken, it probably is.

Reduce your stress.  Eliminate toxins.  Its good for the body, mind and soul.

let go of the toxic

No experience is wasted.  No interaction is a loss.  People come in and out of our lives, some for a season, some for longer – but always for a reason.

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

And now there is summer.

Finally, not a summer of overwhelming homework, but not a summer of fun-filled camp days either.

Thursday we visit Sloan Kettering again.  Time for the thyroid sonogram.  How could six months go so fast?  And as the appointment closes in she starts to articulate her fears.  They are the same as mine.  I should know that she is smart enough to process.  To understand that they are looking for thyroid cancer.

On Friday we see the vascular surgeon for a follow up, and then a genetics follow up.  Meghan loves to visit the geneticist.  She says, quite correctly, that he saved both of our lives.  I remind her that she saved mine.  She smiles, and hugs me, even as she says quite matter- of -factly, “well when I get breast cancer – at least I know they will catch it early.”  Ever wonder what it feels like to be sat on by the ‘elephant in the room?’  Well, as I gasp for breath – speechless, I give her a hug.  No empty promises to offer.  I can’t.  I won’t.  She would see right through them anyway.

This is our life.  This is how our summer begins, and between the two of us, it doesn’t really let up.  There is little time for camp, or beaches.  We will sneak in a few play dates.  We will get away for a few days in August.  She will read a few great books.  We will spend a lot of time on the expressway, or the bridge, or in waiting rooms all over Manhattan.

This – this is why we need a life free of toxins.

This is why we eliminate unnecessary stress.

Cowden’s Syndrome carries enough stress of its own.

Persistence Dog

You see this will be our life – forever.  And the sooner we adjust, and find the balance, the sooner we learn to roll with the reality – the better off we will be.

Forever.

Forever is a long crazy concept.  Forever – while trying not to plan too much.  Forever.

Forever has this awful way of disappearing sometimes.

I used to think Pop’s vegetable garden would be around forever.

GiGi and Pop
GiGi and Pop

Well, actually I guess it is.  I just grow it for him at my house now.

Forever.  It’s all about perspective.

character