Ice Cream for Dinner

You have to give the body what it needs.  Tonight mine needs ice cream.  With hot fudge.

Normally I’m a protein shake, green tea kind of gal.  But I don’t really believe in drawing hard lines anywhere, because hey – you never know.

Today was day 3 of a seemingly impossible root canal.  Our very capable dentist deemed it in the 5% of root canals he has to send out.  That was after almost 90 minutes in his chair 2 weeks ago.

The root canal specialist looked at it and validated the dentist.  She said he was right.  It was going to be tough.  That was just the consult.

Last Tuesday, and again tonight I spent an hour each time with my back lower left molar being attacked.  My jaw hurts.  My face aches.  To hear it wasn’t finished was no fault of the dentist.

It was “odd,” “unusual,” and “the most difficult root I’ve faced in a while.”

Blah, Blah, Blah…

She has to talk to the dentist to decide the fate of my less than one year old crown.  In my gut I’m not so sure the tooth will survive.  Time will tell.

My girl, thankfully used Uber to get home from school, so that she could get the dogs ready.  Lucky, our older dog had a consultation to consider surgery to remove a mass on her side.  She’s 12.5, bloodwork to determine if she’s a candidate will be in Friday.

And that’s just the normal, happens to everyone stuff that has gone on this week.  Is it really only Wednesday?

One day at a time I keep reminding myself.

We re-upped our commitment to Physical Therapy last night after a visit with the orthopedist last week.  He voted for 12 more weeks for the shoulder tendonitis and the possible “plica” in the (formerly) GOOD left knee.  Thank GOD for Dr. Jill.  Without her knowledge, patience, humor, adaptability, passion and skill I have no idea where we’d be.

He also asked for an MRI of the left knee “just in case.”  It’s on hold for now.  We are literally in a point in life where we have to conserve scans.

The brain MRI is February 20th and that has to be priority.

January 17th we saw the adolescent gynecologist.  She reorganized the hormones, and put in the order for an abdominal sonogram.  Its time to check and make sure that uterus is behaving.  As soon as we can get it on the calendar.

calendars

I sent a lengthy summary of 2017 to her geneticist asking that he reevaluate a few areas of concern.  I sent the Email Sunday.  By Monday I had been politely dismissed.

All my hopes rest with the pediatric endocrinologist.  Appointment is 2/9.  He’s gotten a few articles and knows I’ll be pleading for a trial of an alternative thyroid medicine.

I’m starting to lose faith in the medical professionals we see.  And I had thought we’d conjured up a great team.

Cowden’s Syndrome is time-consuming and exhausting.  It’s hard to see unless you’re in the middle of it.

And sometimes when you can see it every day – because you have to- you know that sometimes you need ice cream for dinner.

And that’s perfectly ok.  I may even go add a glass of wine.

#beatingcowdens

It’s Not Over Yet…

Tonight my search for perspective was harder than it normally is.

Tonight I needed a glass (or two) of wine, some time alone in my office, and plenty of music.

And as the lyrics roll through my head in the eclectic mess that spans, Contemporary Christian, Classic Rock, and some alternative memories from back in the day, I somehow start to find myself again.

I am generally a very positive person.  I am able to find blessings in unlikely and hard to reach places.  I make a point of focusing on these things for so many reasons.  Primarily, I find it is necessary to be positive for my health.  While I don’t believe a positive attitude alone will cure illness, I do firmly believe a negative one, or a constant state of stress and worry can worsen illness.  We certainly don’t need that.

But, lately I’ve been frustrated.  I’m even a little angry.  You see – everything is NOT fine.

And I’ve been avoiding my computer because I’d rather write when my perspective is in its proper place.  One of the reasons I love to blog is because I can get right in my head by the time I’m done.  I can typically work through whatever is gnawing at me.

There are drafts in my folder.  Unpublished, unfinished work.  I’ve tried, but I’m struggling.

Logic leads me to retrace the obvious.

In our house the diagnoses came about five and a half years ago.  I was 38 and Meghan was 8.

In most of the people I’ve interfaced with who have Cowden’s Syndrome, their diagnosis is less than 10 years old.  I know there are others, but this is the majority.

There is a growing group of us who are parents.  Now, in my case, my diagnosis was made BECAUSE of Meghan’s.  But, in many cases the opposite is true.  There comes a point where the signs are either apparent, or subtle, and something prompts the formal diagnosis of PTEN Hamartoma Tumor Syndrome, in some form, in our children.

Anecdotally, we are not the only house where the syndrome seems to manifest worse a generation down.  This is a story I have heard many times.

There is a special kind of knot that forms in your stomach and lingers, forever, when you realize that you are somehow responsible, in an unintentional, yet undeniable way.  Your child has this syndrome because, even with a current estimate of a 1 in 200,000 diagnosis it is an autosomal dominant condition, which means that if you have the mutated PTEN gene, 50% of the time, it will pass to your child.

Between us, since Meghan was born in 2003 there have been 30 or more trips to an operating room.  On 18 of those visits I have watched my girl head into surgery.

And I know all the blessings bestowed upon us.  I know the beauty of benign biopsies, and the gratitude of legs that allow for walking when the alternative has certainly been possible.  I know the strength and resilience of my daughter, and the grace of God alone.  I know the grit of a child just out of her 7th knee surgery who understands the recovery process better than any PA she will meet in the surgeon’s office.  I know the feeling of bruises on my knees as I give thanks for my child who is ABLE to recover.  I get it.  I truly do.  I’m grateful.  I am.

But, you know what else?  Sometimes I get angry.  And, that’s OK too.

I’m learning that part of being able to be positive is allowing myself to FEEL and WORK THROUGH ALL the emotions that come my way.  Even the ones that hurt.  Even the ugly ones that don’t have flowers and rainbows attached.

This is reality.  This is our reality.  And I am not about comparisons.  I do not profess to understand anyone else’s reality any more than I could expect them to understand mine.  I do not use words like “worse” or “better” or “harder” or “easier” or “fair” or “unfair.”

What I can tell you about our reality is that 18 is too many surgeries for a 13-year-old girl.

I can also tell you there will be more.  For both of us.

Vigilance, a necessary reality to keep us in front of the astronomical cancer risks associated with Cowden’s Syndrome will lead to more surgery.  And we will hope and pray each is followed by a benign biopsy, or an encouraging word from an orthopedic surgeon trying to preserve a knee damaged by a mischievous AVM.

When I got my diagnosis, I was almost 40.  I was married.  I had a little girl.  I had a home.  A career.

When my girl received her diagnosis she was in 3rd grade.

Swallow that.

It doesn’t taste very good.

Cowden’s Syndrome is isolating.  In addition to numerous food issues, and immunological issues, and significant knee trouble (understatement of the year,)  there are SO MANY doctor’s appointments.  There are countless blood draws.  There are so many days I pick her up at school and we do ANOTHER 4-5 hours round trip in the car, traveling to NYC, sitting in traffic, parking, waiting, sitting in more traffic…

As connected as social media can help you be, there is a lack of connectedness that is inherent with not being there.  Being absent.  Being unable to go on certain trips.  Being unable to do the things kids your age can do…

When I was a child I always “knew” something was wrong with the ridiculous number of surgeries I had, but it was different.  It was not the same as knowing for sure that your genetic mutation was going to guide portions of your life whether you like it or not.

When you have one thing wrong, whether you break an arm, or have your wisdom teeth out, or your tonsils, people seem to know what to say.  When you constantly have something wrong, some type of surgery, or some type of recovery on the agenda, it gets harder for everyone.

People don’t know what to say.  So they don’t…

Cowden’s Syndrome can be very isolating.

What about our children?  What about our children who are being diagnosed younger and younger?  To some extent, yes, “Knowledge is Power,” but at what cost?

We are forced to make the logical choice for necessary screening appointments, and often surgery, while often having to skip social, cultural, or sporting events.

We are forced to say no to social engagements so often, that people forget to keep asking.

Our youngest children at diagnosis may not fully understand the scope of what is now their’s.  But, they will.  If they have a parent with the same syndrome they will watch.  Everything.  If they are the first in the family they will piece it together.  Really there comes a point there is no keeping it from them.  Then what?

I am blessed with a young lady who reads like a book-worm, and has a solid comprehension of people, personalities, and her environment.  I am left only with the option to tell her the truth.

Sometimes the truth gets stuck in your throat, burns a bit, or leaves some nasty reflux.  Yet, still that bitter pill is the only one we’ve got.

I sometimes wonder how different things could have been, if…

But it is my girl who stops me.  Without this diagnosis she knows I would not be here.  My breast cancer was uncovered by her diagnosis and that diagnosis undoubtedly saved my life.  Without Cowden’s Syndrome she knows she would have become someone different.  Someone else.  And that wouldn’t have been right.

While I don’t believe in a God who wants us to suffer, I believe in one who uses that suffering to allow us to become a better version of ourselves.

My girl started Junior High with a broken foot.  During her 3 years there she endured less than perfect social relationships (read, a few very mean children and my child who didn’t always have the patience to contend with teenage normalcy) and 7 surgeries.  SEVEN. Seven recoveries, and pre and post operative visits too.  She did that while holding an average of well over 95% every single marking period.  She did that while making enormous strides as a competitive swimmer.  She did that while learning that she had a the voice of a singer hiding inside.  She did that while performing in several productions, practicing after school for months each year.  She did that while spearheading 3 successful PTEN Fundraisers, essentially putting Cowden’s Syndrome in the vocabulary of our community.  She’s ending Junior High on crutches.  Unfortunate bookends, or a reminder of the strength and resilience of a young lady who refuses to be defined by her disease.

I am sometimes not even sure if she is aware of her accomplishments, as she is so busy pushing onward to stop and notice.

Who sets the example here?

I guess I need to stop hiding from my computer.  Perspective never really leaves.  Sometimes it just needs to be worked through.

This diagnosis stinks.  This syndrome is a real bear to contend with.  It is lonely and isolating and leaves little time to even see family, let alone friends. However, as the saying goes –

And that is probably the real perspective.

And almost as if perfectly timed, I found my title for this blog – as the Pandora radio plays..

“They are inside your head
You got a voice that says
You won’t get past this one
You won’t win your freedom

It’s like a constant war
And you want to settle that score
But you’re bruised and beaten
And you feel defeated

This goes out to the heaviest heart

Oh, to everyone who’s hit their limit
It’s not over yet
It’s not over yet
And even when you think you’re finished
It’s not over yet
It’s not over yet
Keep on fighting
Out of the dark
Into the light
It’s not over
Hope is rising
Never give in
Never give up
It’s not over…”

(It’s Not Over Yet – For King and Country)

#beatingcowdens

“It’s probably nothing, but…”

don't worry

We are two for two this week.

Monday the orthodontist referred us back to the dentist.  The OVERGROWTH on Meghan’s gum may warrant an evaluation, and possible oral surgery.  But first – to the dentist Thursday.

Tonight, an annual eye doctor exam.  Admittedly we are 3 months late.  There was the hurricane, and then Grandma fell, and then the car accident, and then… it was January 29th.

I knew her eyes were worse.  She told me she couldn’t see the charts in the room.  Her teachers asked when she would have another eye evaluation.

She had gone since kindergarten without a new prescription.

The onset of headaches, correlated with the decline in vision over the last three months makes me uptight.

eye chart

She read 20/50 and 20/70 WITH her glasses on.  I almost threw up.

Cowden’s syndrome and its tumor growth, and general overgrowth potential. can lead to the wildest imagination.

But, my husband’s sisters, Meghan’s paternal aunts, have terrible eyes.  So maybe…

Then they took the picture of her eyes, and compared them to the visit of October 2011.

“Well, maybe my machine is just darker today,” says the doctor.  “But there is some shading on the right eye I think you should have looked at.  It’s probably nothing, but…”

Famous words.  They usually lead to a Cowden’s Syndrome mess.

Not much literature on the retina and Cowden’s, but then again, there aren’t too many of us – relatively speaking.

Who am I to guess.  I am closing in on 40 and just now considering my first pair of reading glasses – right on time.

I keep saying that I will call at work. Then I spend the day doing my best to put out out small fires.

explosion

And all of a sudden its time to go.  Off to another appointment.

Tomorrow I will call the “retinologist.”  Who knew?  Thursday we will see the dentist.

Two glasses of wine tonight, and I feel like I have been beat.  What a day.  Early to bed – no doubt.

“It’s probably nothing, but….”

Just in case I should rest up.

IMG_0423

No place like home

We are home.

The procedure is finished.

A scheduled 1 PM start turned into 2:45 on an empty belly.

But, it went fine.

The doctor got what she needed.

Now its up to the pathologist.

So, we wait.

We pray. (THANK YOU ALL…. WE FELT THE LOVE ALL DAY!)

I have a glass of wine (or two.)

We should have an answer no later than Friday.

Early to bed tonight.

Tomorrow I get to meet a surgeon about my spleen.

Cowden’s Syndrome is EXHAUSTING!

Exhausted