Tag: Cowden’s Syndrome

“More Birthdays”

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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

Published on by beatingcowdens3 Comments

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.

Reality Check

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It is not the critic who counts;
not the man who points out how the strong man stumbled
or where the doer of deeds could have done them better.
The credit belongs to the man
who is actually in the arena,
whose face is marred by dust and sweat and blood;
who strives valiantly;
who errs and comes short again and again;
who knows great enthusiasms,
the great devotions;
who spends himself in a worthy cause;
who at the best, knows in the end the triumph of high achievement,
and who, at the worst, if he fails, at least fails while
DARING GREATLY
so that his place shall never be
with those timid souls
who know neither victory or defeat.

Theodore Roosevelt
26th President Of The United States

I intended to write something entirely different tonight, but when I started searching for words of encouragement, to ease my overwhelmed soul, I came across some that were worth copying here.

Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.

  Dale Carnegie
American Author

The whole idea of living with a chronic disease really just stinks.  I mean there are a lot of things, in a lot of people’s lives that just stink, and there are ever so many that I would never for a moment trade places with.  But, that doesn’t change the reality that this genetic disorder, this PTEN mutation, this COWDEN’s SYNDROME, is now part of our “real life,” and I would like to send it back.

Well meaning people, people I love with all my heart, and people I am indifferent to, ask me all the time how we are.  I know they would love to hear that we are great.  They’d like to hear that all is well.  I could tell them that  there are no deep dark fears of tumors or cancers, or surgeries keeping me up at night.  I often lie and say, “great” forgetting to mention the scary headaches, the joint pain and the anxiety that hide behind the beautiful “braces covered” smile of my little girl.  I sometimes say, “we are hanging in there,” which some days means we won’t spend three hours at a doctor’s appointment today, or I am not waiting for a phone call, or a nerve-wracking test result.  Some days it means my heart is in my throat – but I don’t know how to tell you.

I remember when I used to love to eat.  Lots of food – carbs, junk food, candy.  I used to have an appetite, and enough energy to exercise too.  I remember several sizes ago when I had a closet full of clothes.  Now I have enough pants and shirts to get me through.  I remember when my old boobs filled out my tops. 

I sometimes think to myself, “this is not my real life.”  Raw fatigue.  Nerves.  Stress.  Balancing a full-time job, and the normal demands of parenting with the full-time job of managing this disease.  Has it really only been a year that life has been this complicated?  There were always issues.  But a year since the diagnosis.  The confirmation that these risk factors belonged to us.  That they were real, and pressing. 

And yet to look at us – you would never know.  You wouldn’t know of this other life we lead.  This “elephant in the room.” 

Everyone has something.  I have said it a million times before, and I will say it again.  It could ALWAYS be worse, and there is ALWAYS something to be thankful for.  I am grateful for that reality check.

When I don’t call you back for a few weeks.  Or, when I start sending cards late, and losing track of dates.  Don’t worry too much.  We are treading water here.  We will get by.  Just cut us some slack.  Some days it just doesn’t all fit, and some days there is just not enough wine.

It’s trickier in the overlap

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Sometimes I think maybe if we were just battling one thing at a time… it might be a little easier.  Maybe I am wrong, just wishful thinking.  I guess I won’t know because apparently we are tasked with completing multiple battles simultaneously.

Last night we spent hours full of uninterrupted discussion with the pastors of the church where we will be spending our time.  It is hard to know what to call it.  I am not in any way prepared to give up my membership to my home church, and they know and respect that.  Yet, it was so nice, so warm and comfortable to sit with my husband, and these pastors, and have discussions, both personal and theological.   No one was judged.   Everyone was comfortable.  Mixed emotions 2 and a half hours later, past everyone’s bed time.  Our children finished playing, and we left – tired but peaceful.  It’s nice to know where we will be every week for a while.  Its kind of like finding that first permanent job after years of subbing.  It is also nice to have my husband by my side.  God works in very strange ways.

We had planned to be out of the house at 9 to go apple and pumpkin picking this morning.  We were a bit delayed by the late night, but we made it.  It was so nice to see Meghan happy.  She doesn’t ask for much, but had specifically asked for this.

We made her walk, and she did well for a while. Only towards the end did the pain in the legs start in.  Cowden’s Syndrome always nipping at your heels as you try to kick it to the curb.

When in doubt – Daddy is the safest ladder!
Me and my girl!

My PATIENT husband! 🙂

So after such a nice morning – with only minimal pain, a bit of fatigue and a lot of happy, we headed home.

I had missed my standard Friday night grocery shopping at our meeting last night, so we decided to stop by Wegman’s on the way home.

LOVE this place!

I think we made it about three aisles before a look of horror crossed Meghan’s face.  Then there were the tears.

She opened her mouth and again, for the second time in the two weeks since she has had her braces, a bracket popped off.  Now I know this isn’t totally uncommon, but twice already seems excessive for a kid who doesn’t eat ANYTHING she shouldn’t, and who is so attentive to these braces your would never imagine she was 9.

So, as we begin to reassure her that we will take her to get it fixed, SHE reminds US that it is a holiday weekend, and with sheer frustration on her face, she realized – half to herself – and half out loud – that it would be Tuesday before she could have it fixed.

These aren’t Meghan’s braces, but they give you an idea of how hers are set. While they wait for the rest of her teeth, the wire doesn’t terminate at a band on the molar, like I remember, it ends right on a bracket. When that bracket pops off – the wire flies free.

I really was stunned.  There in the middle of the grocery store, with a cart half full, our peaceful couple of hours was starting to crumble – again.  Daddy took Meghan to some neighboring stores.  I quickly finished the shopping, and we headed home.

The car ride was quiet.  I was twisted.  This kid has had enough.  More than enough.  A break for one WHOLE day would be nice.  As I sat, I shed a few tears of frustration.  I left a message on the answering machine at the orthodontist, trying to decide if this was a “true” emergency.  My husband decided it was and called the cell phone number soon after we got home.

He called us within an hour.  He is a good man.  But, he was away.  “Clip it,”  he told my husband.  “Take the wire and the bracket off.  I will fix it next week.”  And so the electrician turned orthodontist, and off came the bracket.

Peace.

And yet as I looked in her mouth, the mouth I help her brush and floss, and I see the swollen gums, enveloping her braces, my stomach turns at the conversation next week.  We will both be told her oral hygiene is poor.  I am sure of it.

Cowden’s means overgrowth.  The gums are supersensitive.  Reacting to the braces.  Trying to swallow them up.   We floss, we brush, we poke and prod.  No success.  Certainly we are trying out best.

Nothing is simple.  Every battle is crowded by another.  It’s not just the Cowden’s Syndrome.  And it’s not just the regular growing up stuff, like changing bodies, and braces, and homework, and after school activities.  It’s the overlap.  That’s where things somehow always seem to get tricky.  Right there in the overlap.

Daddy made a tasty dinner.  Chicken wrap with fresh guacamole.  Things were looking up.  Then, they started to decorate the BIG pumpkin.

Sleeping peacefully.  Potentially a dreadful weekend, salvaged by a clipped wire.  Emotions all across the spectrum.  Another day in the life.  Another day of sorting through the overlap.

And, believe it or not – since I share it with the two I love the most – at the end of the day I wouldn’t have it any other way!-

Cowden’s Syndrome took…

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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!

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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”

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 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!

LAZY?

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I think its Ok to say we have character.  Lots of people I know have character.  That’s why I spend time with them.  I know lots of people who have traveled through their own trials and persevered.  We are all unique, but the same in our drive and ambition.

Why is it then, that not all of our doctors have character?  Some do.  They work so hard.  Even when they are throughly confused, their wheels are always turning.  They return my calls, and my emails.  Instead of thinking, “This Mom is NUTS!,”  they think,”What is wrong with this kid, and (more importantly) how can I help her?”

We have some of both kinds of doctors in our lives right now.  In all honesty, I have had better luck overall picking from the doctor pool than Meghan.  Even with some bumps in the road, my problems, not withstanding the Cowden’s Syndrome – have all been fairly easy to diagnose and treat so far.

Meghan on the other hand has run in circles since she was a baby.  We have had this kid at a flow chart of professionals, and while we have gotten some significant and important answers along the way, I find it almost inexcusable that she is still suffering with random, unexplained fevers and headaches.  I find it disgraceful that she has been on a rotating cycle of antibiotics about every 8 weeks for over 2 years and no one but me is screaming about it.  I find it downright scary that she needs 100mg of Celebrex a day to move, and 1600 mg of acyclovir to keep the Herpes Simplex infections at bay.

So, when we went to see our beloved pediatrician today, who is deeply bothered by this recent fever/headache thing, I brought with me an EMail exchange I had shared with a doctor at a world-famous NYC hospital.  Sparing you the exact read, after summarizing the last 2 weeks, and sending lab work, as well as a brain MRI with an unusual finding, this doctor responded that he felt there was “no necessary follow-up, and he is sorry Meghan isn’t feeling well.”  After reading this aloud to my soft-spoken, proper, pediatrician, his calm reply was, “He is just LAZY!  And you still NEED to find her a neurologist.”

Interesting to contemplate that this doctor from this world-famous hospital was being called “Lazy,” but I have never heard my pediatrician speak ill of anyone.  Now I doubt the man is lazy in the literal sense of the word, but in the “problem solving, figuring out the mysteries of what makes my unusual patients tick” way, I guess he is.

Meghan’s pediatrician is one of a small group of doctors we are blessed to know.  They are few, but they love her like she is their own.  They believe her.  They validate her.  And they won’t stop pushing until they figure it out.

So, while I get tired from running to doctor after doctor… tonight I am grateful for the men of character.  The ones who take seriously their oath, and who remember why they became doctors to begin with.

The New Normal

Published on by beatingcowdens3 Comments

Ok. So that normal was short-lived.  Glad I enjoyed it while it lasted.

I am trying the “don’t worry” thing.  I really am.  Truth be told.  I stink at it.  It’s true.  I try and try, but in the end – epic fail.

We finished the antibiotics Tuesday from the hospital/fever/headache thing 2 weeks ago.  She was on the mend, so I thought.

I know our schedule has been busy.  Too busy for her.  Too many things to do, every day leads to exhaustion.  My body struggles with exhaustion, but hers just can’t cope.

So this morning we went for the follow-up blood work.  The one to make sure the White Blood Cells and platelets came back to normal.  The we headed to Queens to visit my in-laws.  Two dogs, Meghan, Felix and I.

I the middle of a nice visit I noticed her resting her head on the arm of the chair.  Then, she asked for food.  She told me she wasn’t feeling too good so she must be hungry.  We fed her.  Then it all started to crash and burn.

She loves her baby cousin Connor.  But, she started backing away, not wanting to get too close to him.  Then, there was the red line across the eye.  Finally, “Daddy will you rub my head?”

And from there it all went downhill.  A cold cloth and Daddy’s magic fingers did little to relieve the pain.  In about 15 minutes time we were back on the Belt Parkway heading home.

My mind was racing.  She slept for a bit in the car, and I just kept trying to figure out a way that this could make sense.  Not even just to me, but to someone – anyone.

The last time we were in for headaches the pediatrician told me to get a neurologist consult.  Well I am working on it tonight.  God and the power of the internet have me linked up with some Cowden’s patents.  The goal is to find a pediatric neurologist who is competent and already has heard of Cowden’s.

That is of course if the immune system stuff is even Cowden’s related.  Then again at this point I am going under the theory that all this is related in some way.

Settled into bed with Advil and a 102 fever at 7pm. It promises to be a long night.  I will decide on a neurologist and have a few numbers ready to call during my lunch on Monday.  Priority.

We will see the ped at 3:30 Monday, and hopefully not  before.

Worry -it’s what’s for dinner.

Maybe I should stop looking for the old normal.  It happens so infrequently anyway.  Maybe it is all about the new normal.

Fighting My Way Out of the Cage

Published on by beatingcowdens4 Comments

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!