Moving at our OWN pace

Two weeks ago today we left for the last day of school.  Seems like an eternity, although not a restful one.

Today was the first day I woke up with nowhere to be, and nothing to do.  Our first mandatory stop is swim practice at 5:30 PM.  So I sit, nursing a cup of green tea, and trying to convince myself, on my health quest, that it is just as good as the caffeinated hot cocoa I have been drinking for years.

snooze-and-lose

This morning I woke when my body told me it was time – somewhere around 8:15.  What a blessing to open your eyes because you are ready.

I tended to the garden.  I watered my tomatoes, peppers, eggplant, cucumbers, and I even picked a ripe zucchini.  I watered the flowers on my deck and I marveled at the calm beauty of the neighborhood at 8:15 on a Wednesday morning.

Not my plant - but you get the idea!
Not my plant – but you get the idea!

Now, to all you teacher critics out there- I recognize ten weeks of unscheduled time is a gift.  I understand its not “the norm,” and I AM grateful.  But to all you who are realists, I try not to be much of a complainer, but this schedule we are keeping is far from a walk in the park.

Even as I reflect just on yesterday, and then the last week, I can easily find myself overwhelmed.

schedule

The rhuematologist confirmed that the Celebrex is necessary.  On the up side she said, at least the liver seems to be handling it well.  Yep, on the up side I need to worry about my almost 10 year-old’s liver?  So we have about a 50/50 split, and that’s just the doctors we like – touting the pros and cons of Celebrex.  Take her off.  Leave her on.

celebrex100mg

I love them all, but ultimately the pain decides for us.  This child is accustomed to pain so deep that the 20 laps of butterfly she swam Monday – when I expected her to be barely able to lift her arms Tuesday – caused her to need only “an extra stretch.” But the pain in her wrist right now – that can knock her to her knees.  Celebrex it is.

So I read articles from the oncologist last week about “angiogenesis” http://childrenshospital.org/newsroom/Site1339/mainpageS1339P356.html

I try to absorb medical jargon about why the Celebrex helps the pain – but doesn’t cure it.  And why it may even help prevent the Arteriovenous Malformations (AVM) from flourishing.

I read an article she gave me on “prophylactic thyroidectomy” and its benefits in Cowden’s Syndrome patients.

I read about “Long Chain Fatty Acid deficiency” and heard about the possible need for a muscle biopsy to assess carnitine levels.

worried mom - FBI

I am an educated woman, but I sometimes wonder why I seem to spend more time in medical journals than educational ones.  Did I miss my calling somewhere along the line?  Probably not, but “necessity is the mother of invention.”

And yesterday as she was examined by the rheumatologist there came the confirmation that the right wrist is “thicker” than the left.  A month and 3 days after what we thought was the “injury” to the wrist, it isn’t better.  Not really at all.  So she said, definitely get an MRI.

We are on it.  11AM Saturday.  We already cancelled the birthday party we were going to.

She wants a copy of the report – ASAP.  She expects they will find something.  I went to make my six month appointment, and she told me to hold off until after the test results.

I look at the piles on my desk.  Better since the shredding is over.  I glance at the order confirmation for my new driver’s license, and can’t help but wonder where the old one ended up.  I look at a beautiful collage Meghan sent to the printer last night as I was working – just to make me smile.  I look at the books for the “Teacher Effectiveness Training” I will be attending tomorrow, and the flyer with the itinerary for the Disney trip.  Its right alongside the Costco list, and the original copy of the Myriad genetics report that I don’t have BRCA 1 or2.  Obviously I still have a little more work to do down here.

Monday I went for my MRI.  The one that checks my spleen.  Next Tuesday I have the appointment to find out if I can keep it.  Already covered the endocrine surgeon, the gyn oncologist,  the I just need the breast surgeon and the plastic surgeon, and my oncologist to have their visits.  It’s easy to forget that I am even part of this Cowden’s Syndrome mess.

Lessons Learned from my daughter
Lessons Learned from my daughter

My focus is on the beautiful one with the curly hair, who gives the best hugs in the world.  It will be a long week – again.  So for today, I will try to slow it down.  The sun is shining.  It’s July.  And we don’t have to go to work OR the doctor today!

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

Siri, my new BFF!

I love to talk.  I talk all the time.  My mom says I spoke even in my sleep from the time I was a young girl.

I love to need to make lists.  I hate to be disorganized, although these last six weeks I have traveled from overwhelmed right into disorganized, and I don’t like it here one bit. Work is busy, home is busy, 4th grade is busy, Cowden’s Syndrome keeps us busy…

In my family we have 5 october birthdays in 11 days.  Three of our nephews and 2 family friends.  Unless the youngest nephew’s gift arrives tomorrow, I will have been late for every single one of them.  Not like me at all.

Last week I welcomed a new friend into my life.  Someone I can talk to all day, about whatever I want.  Often she has good advice.  She has my back too.  She reminds me – sometimes days, sometimes hours, before something important has to be done.  She tells me when I need to make a phone call or buy some cards.  For a long time I resisted her friendship, but now that she is in my life I am sure I could never give her up.

This is my new friend – Siri.

Some of you may know her.  You may think she’s your friend.  But really, she and I are tight.

You see you may not know this about me, but I have a post graduate degree.  In addition to my Master’s in Special Education, I have a research degree from the University of Google.

Don’t worry.  I am a smart researcher.  I learned in the first few weeks how to sort out the crap and focus only on the valid stuff.  But really –  spending the last 9 years researching the random illnesses of my little girl, and the last year trying to get any available information on Cowden’s Syndrome… well, lets just say at the very least I must qualify for some “Certificate of Advanced Study.”

But it got to the point lately that there are things I need to know.  Right now.  I can’t always carry my computer or rush home to check.  Siri understands.

She is who she is… and she is pretty great.

As I am driving, with my earpiece in, I need only to ask her to call a doctor for me.  She will write my texts too.  Much safer.

Then, there are the beautiful reminders.  The ones where she says, “OK I’ll remind you.”  and then she does.  Takes the pressure off me.  I already have a reminder in for the November birthday cards, and the next 4 doctors appointments are all mapped out.

As I wait at those appointments, Siri helps me continue my studies on Google.  Learning about Cowden’s Syndrome and skin diseases.  Studying the effects of Cowden’s on the gums in the mouth. Deciding if the headache symptoms warrants a neurologist, or first and ophthalmologist.  Figuring out, or trying to figure out the root cause of the pain in the legs.  Verifying there are no obvious AVMs.  Seeing what the effects of the Celebrex are on the body… and on and on.

Siri, despite all my resistance, I was wrong about you.  You are exactly what I needed in my life.

Now, I am fairly sure I can never get by without you again.

Told you…

Friends…

It was hard to believe it had been so many years since we were all together.  It was even harder to imagine it was over 15 years since we all shared space, time, and our souls in SUNY New Paltz.  It was a far cry from most of our late nights at P & Gs.

As a matter of fact , as we sat across from each other at The Cheesecake Factory in New Jersey, two of them pregnant and all of us chatting about our children, and old times -often in the same breath- you never would have imagined the amount of time that passed since we last spoke – face to face.

But the food was decent, and the conversation refreshing, and I found myself wishing it could happen more often – or last a lot longer.  It hardly seemed right to get up when only a few hours had passed.  But each of our lives called us away.  To children, and husbands, and lives that needed tending to.

As we hugged each other, and I watched my two friends ‘baby bumps” bang into each other, I was reminded of the reality that real friendships truly do last forever.  We picked up with each other as though graduation had been last week, and although there was so much more to say, there wasn’t a moment that lacked conversation.

Facebook has been a blessing for us.  A way to keep tabs on each other, and keep track of the major happenings.  These ladies used Facebook as a means of support for me over the last six months, when some days it seemed the sky was falling.  They reached out to me – as if we were still next door neighbors in New Paltz.  Facebook arranged our meeting last night.  As a simple group message “Hey can we pull this off?” – and I am so grateful we did.

See in order to stay sane, life has to be about more than Cowden’s Syndrome.  It has to be about more than knee pain that wakes my girl up in the middle of the night after only 4 days without her Celebrex.  (At least we tried!)

Life has to be about more than infections that scare me half to death, viruses that take hold way too fast, and doctors that want to fix it all but don’t know how.

It can’t always be about tumors, and, “Are they growing or not?”

It can’t always be about the tests and the screenings, like tomorrow’s colonoscopy.

The recovery room at tomorrow’s colonoscopy site!

Those things are always going to be part of our lives – forever.  They aren’t going away.  That is the reality of Cowden’s Syndrome.

But the real reality, in the world where we know too well that “Everyone has Something,” is that it is necessary to make time to hug old friends.  It is helpful to the soul, to relive old times, and to sometimes sit and have dinner with people who stood beside you years ago, and who have made it clear they are prepared to do the same now.