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.

patience-buddha1-300x248

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?

What a Day!

I am getting a bit fatigued by all the positive stories I tell myself.  All the ones where everything works out just fine, and we get a bit of a break from doctors and surgery and chaos and worry.

I think I am getting tired of them, because I am starting to doubt if they are true.

The waiting room in the pediatrics department.
The waiting room in the pediatrics department.

We began the day at radiology at MSKCC in NYC.  The thyroid sonogram took longer than it should have.  I knew that.  I also knew when the doctor of radiology asked to speak to me alone that the news wasn’t great.

The nodule they were concerned about in June still has them worried.  Despite there being MANY other thyroid nodules, this is the one that is of concern.  I have every reason to believe it is the same nodule that caused concern when we had the horrendous biopsy at the other hospital a year ago.  The doctor told me right there it had to be biopsied.  She didn’t even wait for us to see Dr. S.  (See the appointments are set up so you go to radiology an hour and a half before you go to the doctor.  Then the doctor usually reports on the findings.)  I knew this was out of order, and it spoke to the seriousness of it all.

I explained that Meghan‘s biopsy last November was the most traumatizing experience of our medical lives together.  We have been through a lot, but watching that radiologist YELL at her to be quiet, and then BURN her neck with the numbing spray… well it was too much for any of us.  She will need to be sedated I said.

We went upstairs for our appointment with Dr. S.  Before that Meghan met with one of the Child Life Specialists, and gave over 2 shopping bags full of toys.  The woman was in awe, and I was just so proud.

We checked in for our visit with Dr. S. and we waited.  While we waited I spoke.  Candidly.  I had to be the one to tell her they were looking for cancer.  I had to tell her they were going to biopsy again.  I had to tell her I was TRYING to get her sedation, but I couldn’t promise.  She swallowed.  She stared at me.  She took it all in.  Then she reminded me I should try REALLY hard for sedation with the biopsy.

We saw Dr. S.  No new information, except that she grew a few inches and lost a few pounds since June.  HE said she is OK right now, but he doesn’t want to see her lose any more.  I chuckled at the school notices I always get home calling her obese.  Dr. S.  reexplained what I had heard in radiology.  He reassured us that  even if the nodule is malignant it is small, and not likely to need more than a thyroid removal.  Some comfort… but not a ton, for my girl still growing.  We were advised to take the first available biopsy appointment.  And we will.  I should know in a day or so when that will be.

american girl

Once we checked out it was on to the American Girl Store.  WHAT A CROWD!  Not being crowd people, either of us, we navigated the store and Meghan picked up some essentials – like a backpack and an allergy safe lunch for her new doll.  The doll got her ears pierced, and we were out the door.

Daddy at work.
Daddy at work.

We headed up to see Daddy at work.  We got a close look at the New Year’s Eve ball, and the view never gets old, no matter how many times we see it.  Meghan LOVES seeing Daddy at work!

Family shot in front of the New Year's Eve Ball.
Family shot in front of the New Year’s Eve Ball.

45 minuted to get the car out of a midtown lot.  We arrived home to 2 dogs that just weren’t able to wait until we got home.  Upstairs floor cleaned.  Two glasses of wine gone.  Some type of leftovers for dinner.  And tomorrow we get to wait by the phone again.

Good thing we are always ready for a fight!
Good thing we are always ready for a fight!

Maybe in January the Ortegas should resolve to lose a thyroid and a spleen?  One each?  Really???

Tonight Cowden’s Syndrome, I will thank you for my gray hair, loss of appetite and generalized anxiety.  Cut us a break… please?

Blessed- with my fake boobs

No, seriously – I mean it.

Yes, there is the occasional moment where I think the new girls feel a bit awkward, or unnatural.  There is the occasional moment when I look in the mirror and try to remember what the old girls looked like, and what it was to have nipples instead of scars.

Then I get over it.

And I think about how comfortable and natural it was last night, as I held my exhausted daughter and she rested her head on this size A silicone that sits where my old boob was.  She didn’t even hesitate.  She didn’t mention it being weird or unnatural.  She didn’t notice.

And my husband, who means it when he says over and over – “I am just so glad you are here.”  And, I believe him.

I am blessed to have had great surgeons, a superb support system, and the “push” to say goodbye when it was time.

A year ago I still had more body parts.  If I had left them all alone I could be dead now.  But I am not.  And the cancer is gone.

boobs

This Cowden’s Syndrome can really suck sometimes.

Other times I feel very blessed.

Plus – mine will stay perky longer than yours! 😉

 

Four hours in the gas line

I left my house at 8:25 this morning.  Admittedly it was later than I had wanted, but I struggle to clear my head in the mornings these days.

I drove for a bit, to all the local gas stations.  I even spent a few minutes on line at one.  Then I had my friend Siri call to make sure they had gas.  Nope.  Off that line too.

I drove past a station with a line that seemed manageable.  I asked a woman if they had gas.  She cried.  She said, ” I have been here since midnight waiting.  The delivery just hasn’t come.”

I finally ended up at Costco.  I knew they had gas.  If you are not from Staten Island, it will mean nothing to you when I say that the line began at Richmond Avenue by Best Buy, wrapped around Forest hill Road, onto Richmond Avenue, and the BACK into the Costco lot.  I estimated 4 hours when I got on.  It was 9:42

Four hours in the gas line is a LONG time.  I had more time alone with my thoughts than I like.  Thankfully, I had the iPhone to keep me a bit busy.  But in between games of scrabble, there was way too much time to think.

It was flat out unnerving, almost surreal to be on a gas line of this magnitude.  No matter how I tried, I couldn’t wrap my head around it.  I just knew I needed a full tank to get me through the week, so I waited.

I thought about the hurricane.  Hurrican Sandy.  My mind wandered to Hurricane Katrina, and the news coverage I watched I remember feeling like it was so far away.  No more.

The recovery efforts taking place miles from my home, in areas I have frequented my whole life.  I thought about their homes, and then I thought about the people- returning to find their homes uninhabitable.  And those who could get in, well – they had the job of a lifetime ahead of them.

I thought about the mother, whose 2 babies were ripped from her arms in the rising waters.  The babies, safe in God’s hands.  The mother – tormented for all of her days.  I prayed one of the many prayers I pray for her each day.

I thought about friends from work.  Their losses.  One with a new baby on the way.  Waiting to have the FEET of water that entered their home addressed.  Others who suffered damage to their own homes, and the ones whose parents or relatives homes were destroyed.

I thought of the trees that make my neighborhood so spectacular – ripped from their roots.

It was a really long line.  So I had time to reflect on the courage, strength and resiliency I have seen.  I thought about the downed trees, and the friends STILL without power of heat.

I though about the looters, the liars, and those taking advantage of the tragedy.  And I truly hope God has a place all picked out for them.

I thought about my little girl, and all she has gone through, and how she continues to make me so proud.  Today she put some of her favorite stuffed animals in a bag, “For the kids who lost everything.’

And of course, all thoughts always return to Grandma.  92 years old – most of it spent right here on Staten Island.  She and Pop married in 1945, and moved into their current home in 1956.

Grandma came home last night.  Late.  So there was confusion as to exactly where she was, but we hung together as a family and worked out some of the kinks last night.  I was anxious to see her, and Pop.

I thought about this year.  The magnitude of so many things taking place in such a seemingly short period of time, and I remember why I am so tired.  The diagnosis of Cowden’s Syndrome – so permanent and life changing, and even on top of that, this year has seen surgeries, cancer, loss of loved ones, more cancer scares, natural disaster… and I am only getting started.

I will shop for Christmas, but mostly I want Christmas to come, because its time to celebrate the birth of the Baby Jesus.  We need something to celebrate.

1:35  (3 hours and 53 minutes) Hungry and tired, I pulled up to the pump.  I don’t know – or care how much the gas cost.  I only know my tank is full – at least for now.

Home for a quick shower, then right to Grandma.

Family.  It always mattered a lot.  It matters now more than ever.

Christmas 2009

“More Birthdays”

I get it.  Sometimes it takes a bit – but I get it now.

I mean, I understood in theory what the American Cancer Society meant when they came out with this slogan, but today it really hit me.

 

Today was it – the “take two” for my little girl who was shut out of the Susan G. Komen Race for the Cure in September because of a fever.  This was her chance to walk with Mom and Grandma.  She even got the added bonus of having Dad with us this morning.

My Inspirations!
My HEART and SOUL!

 

Living where we do, an event like this seems to bring out just about everyone, and it was hard to take two steps without bumping into someone we knew.  It was also almost impossible to look anywhere and NOT see one of those pink survivor sashes.  I saw them on women of ALL ages – from the frighteningly young, to the admirably old, and it got me thinking.

More birthdays…

Before my mom had her cancer, she could have sometimes been caught cringing at the sound of “50.”  After a double mastectomy, 6 months of chemo, and in the middle of 5 years of tamoxifen – she embraced 50 with a smile, and slid gracefully past 60.  “Beats the alternative,” she often says.

More birthdays…

We waited with a group from Meghan’s school for a while, and it was hard not to read some of the “team” T-shirts.  A large group gathered right next to us was commemorating a young lady who apparently died of breast cancer in 1994.  Her birthdate was listed as 1971.  What her family probably would have done for more birthdays.  I can’t even imagine…

More birthdays…

As I stood there, I thought about the “previvors” I have “met” on the internet and from this blog.  They have courage of a type no other can quite get.  The courage to undergo a prophylactic bilateral mastectomy is not to be understated.  I am impressed at the maturity of  the very young, and the wisdom of those closer to my own age.  But, I was struck, somewhere in between the quick math that left me knowing the young lady on the T-shirt had been 23 when she died of breast cancer in 1994, and that my own girl will be 23 in 14 years.  Suddenly it didn’t seem that long, and I was afraid.

More birthdays…

My little girl will grow to be 95 I reassured myself.  With the power and knowledge we have – she will know lots more birthdays.  But the reality that my mom had cancer at 48, and I had it at 38, and the current screening recommendations are to screen 10 years before your closest relative had the disease, well – it made it hard to breathe for a few minutes.  Then my husband reminded me that she has ALREADY been screened – twice.  We will be vigilant.

More birthdays…

And then I thought about my own.  I will turn 39 next month.  That is the age some people like to stay at forever.  NOT ME!  I want MORE BIRTHDAYS!

My beautiful cousin Meghan died of Leukemia in 1991, on my 18th birthday.

 

More birthdays….

My cousin Meghan was a brave soul.  She was diagnosed with Leukemia when she was 2.  She fought for 4 years before the disease took her from us.  She got her wings the day I turned 18, and every birthday since then has been bittersweet.  We had a connection that I still find it difficult to describe.  My love for her was deep enough, that I needed to name my daughter for our “Angel Meghan.”  Meghan did not have enough birthdays.  This may be the year that I look at mine a little differently.  Maybe its time to use my birthday as a time to celebrate BOTH of our lives.

More birthdays…

We left the walk a little early this morning.  We had to head out to Long Island.  My nephew Luke was celebrating his 9th birthday today.  And as the kids played, and the candles got blown out on the cake, I found myself really sure that I understood.  As my sister said just an hour or so ago… It’s not about the gifts.  It’s about the people you celebrate with.  We celebrated Luke’s birthday with 3 GREAT grandparents, and 4 of his grandparents.  It’s easy to fight for more birthdays when you are this blessed.

I get it…

It’s not all about us

And this is how the day started.  With thoughts of Friday.  Never a good way to start the week.  I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?

But, we got it together and got out of the house on time. 

Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street.  As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else.  I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus.  UGH!

Pretty much that sums up how the day continued.  There is a sense of urgency in everyone it seems – except about what really matters.

Now I don’t claim to have it all together all the time.  And I don’t claim to be free of frustration.  Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.

But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view.  I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes.  And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.

Maybe that’s it.  Maybe I feel like too many people don’t realize how precious life is.

I don’t mean it as a morbid thought – but it really is true.  I look at my grandparents, still married  – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out.  I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often.  So many people could learn life lessons from my grandparents.  They are role models to be emulated in so many ways.

Ist Holy Communion 2011, with GiGi and Pop

It shouldn’t take a rare disease.  Cowden’s Syndrome or any other are not prerequisites for compassion.  You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.

We are in a waiting period here.  No major new doctor news.  The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her.  The joint pain is returning, slowly, one spot at a time.  It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week.  Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain.  We go to the eye doctor in 2 weeks.  The cardiologist is the beginning of December.  He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart.  Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules.  That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..)  But, for now we are in a holding pattern and it is a good place to be.

Of course, being in a holding pattern gives my girl time to think.  While we wait word on the necklace from the Global Genes Project,

she is already planning our next fund-raising adventure.  I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th.  And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.

So, I put a few feelers out.  We will keep you posted.

I will be practicing looking at the world through the bright eyes of my child.  She sees a lull in doctors as an opportunity to spend time helping others.  There has to be a bunch of lessons there.

Take a minute to breathe.  Time passes so quickly.  Hug a loved one.  Look at the world through someone else’s eyes.

I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.

Cowden’s Syndrome took…

Well, it took my thyroid, or at least any functioning part, long before I knew why.

It took my boobs in the prophylactic mastectomy that wasn’t so much prophylactic.

Cowden’s Syndrome took my uterus.  But I didn’t need it anyway.

It took my ovaries, but it gave me hot flashes in return.  Fair trade?

Cowden’s Syndrome took my checkbook, and used it for copays, and parking lots.

It took my calendar – and filled it with all sorts of places I didn’t want to be.

Cowden’s Syndrome took away my peace of mind, and filled it with worry.  (OK, MORE worry…)

It took my appetite.  If you don’t count Cheerios, ice cream, and salad.

It took away all my comfortable clothes, and has forced me to replace them in smaller sizes that appropriately cover my fake boobs, without losing track of them in shirts that are too large.

BUT,

it gave me the means and the motivation for education and early detection.

It gave me the motivation to step forward and say, “I don’t need THESE any more.”

Because I have Cowden’s Syndrome I will not suffer at the hands of breast or uterine cancer, and I will do my damndest to make sure my little girl doesn’t either.

Cowden’s Syndrome gave me the courage to fire clueless doctors, and educate the ones who care.

I encountered an acquaintance with breast cancer today.  She had on a beautiful wig, and is in the middle of chemotherapy.  I felt guilty as she asked me how I was feeling.  She knew of my ordeal last spring.  Survivor’s guilt I think.  It broke my heart to see her hurting, even though I feel she will be well again.

Cowden’s Syndrome SUCKS, in so many ways.  But it is part of us now, and like anything that becomes part of you, I believe you have to yank the good out of it.

Cowden’s Syndrome has taken a lot from me, from us in this house.  But the knowledge we have gained will give us second chances that some others may never have.

Cowden’s Syndrome took from my body – but in many ways it gave to my soul.

Perspective.

How Cowden’s Syndrome changed… my phone!

I know I have said this before.  And, I know that many of you can relate.  Since being diagnosed with Cowden’s Syndrome (insert your diagnosis here…) nothing is what it used to be.  I am not the same.  I have changed.  Out of necessity, for survival, and maybe because sometimes its good to get rocked to your core so you have to shake it up a little.  Don’t misunderstand me, I am not HAPPY about the diagnosis, or its far-reaching, life altering effects.  I am just saying that complacency sometimes has some troubles of its own.  A little shake up (or a few major earthquakes) now and again, keep us hopping.

So, when I say to you that my diagnosis with Cowden’s Syndrome has forced my transition into being a Smart Phone user, maybe you can relate.  I promise, for me the two are closely connected.

I am frugal.  Have always been careful with my money.  I love to give to charities, I love to give to friends, for weddings, and showers, and babies, and special occasions.  You should know that my credit card balances are respectably, almost frighteningly low, and I have been known to stop and save up for the things I want.  And, you won’t catch me spending $100 on jeans I can get for $30, or gleefully sending off the payment for the utility bills without a slight lament that it seems like money wasted.

When we first got cable, I only wanted one box.  I resisted the DVR at first too.  I lost – both times.  But I didn’t care so much because Felix wanted it, and at least it was going to make him happy.

I don’t require a lot.  A few pairs of comfortable sneakers, some nice jeans, and a few tops that fit me.  I need a working computer, frosted cinnamon Cheerios, and an ice cream cone – often.  I am content to alternate between a few pieces of jewelry.  I like my house clean and neat – but other than that, it is hard for me to come up with something I want, or need, except for perhaps a few more hours in a day, and less time tied to my computer, which leads me to the reasons it might be time for  a smart phone.

Now, Felix got his months ago.  And I was OK with that.  Again, he needed the boy toy.  And, he uses it.  He watches videos as he commutes from work, plays with family photos, and scaling down into just one lightweight device made his job as a climbing electrician even easier.  When he first got his he said to me, you have to.  I said, “No way!”  I was still calculating the cost of his data plan and what it would do to our monthly cell phone bill.

But, these last few months have been a litany of medical tests and appointments for Meghan and I.  We are constantly awaiting calls, and test results.  And, I have found that in Manhattan, many – ok MOST, doctors will Email for convenience.  Convenient – if you have access.

I can’t access my personal Email from work. Even if it gets through the fire wall, it’s just a bad idea.  So I find myself daily, as I run home from work to let the dogs out – frantically checking Email and responding as quickly as I can.  I also find myself waiting a lot, at doctors, at dancing school, at swimming, at PT, wasting time where I could be handling all of this.

So, my husband sat me down for “the talk.”

“Remember after your cancer in March, when I told you to order the Cirque du Soliel tickets for Disney World?   Remember when you told me there was no way because the tickets were such and expense.  Do you remember?”

I did remember, as I stifled a giggle.  He had explained to me that now, having had the “wake up” of our lives – we were to take some chances, have some fun, and DO things we wanted to do.  He reminded me that we are fortunate to be able to afford nice things, and sometimes, we need to treat ourselves to family memories.  He said, “If having cancer didn’t wake you up, I don’t know what will.”

So, I ordered the Cirque du Soliel tickets last March, and we thoroughly enjoyed the show in August.

Now, he said – it’s time.  Get rid of this phone.

Probably only a slight exaggeration

And move onto this one.

“It’s time you stop worrying so much about every little detail.  Have a little faith.  Have a little fun.  You have earned it.”

He’s right.  He usually is.  Last night I ordered my Iphone 5.

It will take about a month.  I can wait.  Poor Siri will be so busy with reminders she won’t know what to do.  And I can’t wait to release a little of the pressure of having to remember everything.

Cowden’s Syndrome, with all the complications it added – means that that smart phone moved from luxury to necessity.  And I must admit, I am resisting calculating the new bill because even I am little excited about being shoved into 2012!

And that my friends is how Cowden’s Syndrome (even) changed my phone!

Just Another Day “Off”

 We had a day off today, so if you play this game often, you can guess that we spent it – at a doctor!  Because, that my friends, is how we roll.  Except today wasn’t a high-tech specialist or a visit to Manhattan for testing.  Today was kind of ordinary.  Today we were at the orthodontist.

Now, I have made no move to hide my concerns about Meghan‘s accelerated development, but since I have come to the conclusion that I am the only one at all concerned, I am trying to just move along with it as it comes.

We have been with the orthodontist since she was 7.  At the urging of our kindhearted dentist, I was nudged, gently at first, and then… well, it was time to take her to be evaluated.  At 7 she had a rake put in her mouth.  A fixed appliance, similar in concept to a palate expander, but different.  A rake is there to break the tongue thrusting habit.  She wore that fixed appliance for a year, and a removable nighttime retainer for another year.  All the while the progress her teeth and her smile made were remarkable.

So, last month when we were at a routine check up the orthodontist told me to schedule an appointment to have her braces put in.  I asked when, and was told, “soon.”  It was shown to me all the progress that had been made, visible in the computer Xrays, and explained that if we put them on now her wear time SHOULD be 18-24 months. 

Quickly doing the math I asked, “She could have them off before Junior High?”  Thinking in my head how fabulous it would be to have one less worry during the three most awkward years of your life.

He looked at me a bit stunned and asked, “How old is she?”

“She just turned 9.”

He looked at the XRays again.  I asked him if she was too young.  He told me her chronological age really had nothing to do with things.  Her dental age makes the decisions.  Her mouth is ready he told me.

So, we made the appointment and then sat in the car for a long time.  She asked me question after question.  She was curious about my braces, and her Dad’s experience as well.  She wanted to know why I thought it was so good to have them off before 6th grade.  She told me she was scared,  which I said was normal.  She asked me why everything was happening at once.  Why was her body growing so much, why is she ready for braces, why can’t she just take a rest?  She understands really, she always does.  But sometimes she needs the pep talk that we have to press on.  She came around and I turned the car back on, prepared to enjoy one last afternoon in August before school began.

“One more thing Mom.”

I stopped and turned around to look at her.

“Don’t tell anyone at all.  Don’t blog about it.  Don’t tell your friends.  Don’t tell anyone.  I want it to be a surprise.”

She might have just as easily broken my fingers, and barbed wired my mouth shut.  But she was clear.  This was HER secret – not to be released without her permission.  And while I may have flubbed once or twice along the way, on the whole I did a darned good job.

She taught me (another) lesson that day.  When I share my life here, I am also sharing hers.  And she wants, and deserves a say.  We have talked a lot since then about whet I can and can not write about.  She puts very few restrictions on me, and I appreciate that – but I respect each one.  This life is hers too.  And, in the middle of teaching her about the permanence of the internet, I have to respect that on some things she will want privacy.

So, I write about Cowden’s Syndrome, about thyroid nodules, and AVMS.  I write about breast cancer and my mastectomy and hysterectomy.  I write about her worries about cancer.  I write about her desire to fit in, to have fewer appointments, and to feel a bit more normal.  I write about the countless hours we spend waiting, and the doctors who often don’t help much anyway.

I write about her desire to change the world – her fundraising ideas, and what a generally awesome mature, and compassionate kid she is.

And then, I let her read.  If it bothers her.  It comes out.  Its only fair.

But, I tell her, there are sacrifices, some small sacrifices of privacy that have to come when you want to raise awareness.  She gets it.  She always does.

So today, after the braces were on, and literally not less than 25 minutes later – before a drink of water – one of the brackets was off. (The cement must not have adhered.)  There were some tears then.  Some frustration about  wasting the WHOLE day at the doctor AGAIN… even if it is for “normal” stuff – none of her friends have to have braces this young….

And there was the life lesson for today.  For both of us.  We stayed calm.  We had another long talk about how “everyone has something” even though it seems she has an awful lot.  We talked about her friend’s older sister, and the new back brace that she is wearing, the apparent culmination of a long list of medical issues that have plagued her.  That young lady never seems to complain either.  Maybe that’s why Meghan respects her, and is drawn to her.  Kindred spirits?  We know quite a few.

We got the bracket fixed.  We headed to Party City.  We got a bargain on matching Halloween costumes.  We went to Kohl’s and she got a stunning dress for the Father Daughter Dance in November.  Slowly, the smile crept out.

We brushed the teeth for a long time tonight, getting used to the awkward new additions in her mouth.  Soon they will become  natural, like all the other bridges she has come to and crossed in these nine years.

Maybe the Cowden’s has nothing to do with the braces, or the need for having them so early, but I think it has helped make us even stronger, tougher, more durable.

She is sleeping peacefully, all content pre approved. 🙂

Another day off, another mission accomplished.  One day I would just like the mission to be a day in our PJs!

Award winning smile – even before the braces!

Fighting My Way Out of the Cage

A few days ago I wrote about my dog Lucky – biting through the cage.  Well she got her wish, and she is a free dog now.  Free to roam around my house, lay where she wants, and drink when she wants.  She is much calmer and happier now.  It doesn’t take much to make her happy.

Why then can I not take her lead?  Why am I living in the cage of my own thoughts? 

My husband, he has the right idea.  He worries only when it is absolutely necessary.  I worry about making sure the stove is turned off.  He worries when the house catches fire.  Maybe it’s a male/ female thing.  Maybe it’s my controlling OCD.  Who knows?  What I do know is he is MUCH healthier than I am mentally.

I am still quite sane, but admittedly neurotic.  Some say it was inevitable after the year we have had.  I think it stretched back much farther.  I could say parenting a not so healthy child has done it, but if I am honest, I think I have always been this way.

I just read a Facebook friend’s post.  She talked about her brain continuing 24/7 even when she asks it not to.  That’s EXACTLY how I feel.

I am sure the Cowden’s Syndrome, the mastectomy, the breast cancer, the hysterectomy, the tumors on the spleen, the cyst on the kidney, and the constant screening tests aren’t helping.  And those are just mine – not Meghan‘s!  We average 3 doctors a week, usually at least 2 on the schedule and a pop up.  Each one seems to look, poke and prod and not offer a single answer.  Then the tests lead to more tests.  It’s a bad cycle we are in here.  So then I spend my spare time researching – thinking maybe I can find the answers they don’t know.  I end up just as clueless and thoroughly exhausted.  Sometimes you have to stop biting at the cage, realize the answers aren’t there yet, and realize you have the power to let yourself out.  I am “luckier” than my dog Lucky – no pun intended.  I have the benefit of being able to free myself.  I just never seem to get it quite right.

I am going to try that one day at a time thing again.  I am going to try to concentrate on all the many things that have gone right.  I will TRY to worry less when my daughter’s WBC is frighteningly low, while I wait for the retest.  I will worry less about West Nile Virus, and just try to treat the 8 mosquito bites on the leg of my immune compromised kid.  I swear I will try.  It’s not going to be easy though.

When you see me in a fit of worry, feel free to give me a “cyber” smack into reality.  ONE DAY AT A TIME!

TODAY – good things happened.  I got through the baseline screening colonoscopy and endoscopy.  The colonoscopy was completely CLEAN!  I do not have to go back for another 3 YEARS!  Beats the heck out of the every 6 months they were recommending for Cowden’s patients.  Also, my CLEAN scope frees up my little girl for a while.  As long as mine stay clean they won’t start screening her until she is at least 18.  Breathe.  Some minor biopsies on the endoscopy but the doctor is expecting a CLEAN pathology.

For me, for my daughter, for my husband, and for ALL of us who are fighting our way out of the cage.  We can do it – one day at a time!