Category: Daily struggles

Siri, my new BFF!

Published on by beatingcowdens2 Comments

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…

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!-

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!

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

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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!

Friends…

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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.

Biting through the cage

Published on by beatingcowdens9 Comments

My dog Lucky is a bit neurotic.  She just is.  So when I came home today to find she had chewed through half her metal crate – literally lifted the bar off at one point, I wasn’t all that surprised.

Lucky (the black one) and Allie, playing together.

It got me to thinking though.  No one, or thing – really likes to be caged.  The “girls” get plenty of time to roam free when we are home, and when we are not, but we have to make the best decision for them each time. 

What struck me thought tonight, when I saw a piece of the metal crate literally bent off, is exactly how much she doesn’t like the crate, and how much she wants out.

We feel like that sometimes here – about PTEN, and Cowden’s Syndrome.  We feel like we are stuck, in a locked crate.  We want to run free, but the daunting tasks that lie ahead make it seem like an “Escape from Alcatraz” might be necessary.

Meghan’s fevers this weekend scared me.  I know her immune system deficiency may stand alone from Cowden’s, but that doesn’t make it any easier to process.  And, I swear if they were not related before, they feed off each other now.

The fever was gone Sunday night.  It made another showing of about 102 and then that was it.  She stayed home Monday with our friend Patty, and was treated like the princess she is.  By the time I came home Monday she looked so much more like herself.

We went to the pediatrician Monday night.  He wants me to contact her oncologist and get a referral to a neurologist to address the intermittent headaches she has been having.  Her oncologist who Emails quickly, got a set of all the recent labs and the recent brain MRI.  She is going to get back to me.  I have no idea where we will fit one more doctor in – but we will figure it out.

So this morning, we woke up feeling ready to go.  She responds so well to antibiotics, that we were seriously on the mend.

After she brushed her teeth she complained her gums were bothering her.  I didn’t see much. 

Tonight she said it was much worse.  There is a growth on her tongue.  Right on the edge.  It grew today.  During the day.  No idea why.  No clue what to do about it.  I don’t know but it reeks of Cowden’s and its NASTY overgrowth – of everything.

I guess I will deal with it tomorrow, right after I call on the throat culture and find out if we need to see the ENT.

Someone told me today I looked tired.  Not me.

If you need me, I will be biting my way through the crate, getting rid of one bar at a time.  Maybe Lucky las the right idea.

Every Day is a Great Adventure!

Published on by beatingcowdens2 Comments
My walking team (minus1)

Ever feel like you lived a few days all at once?  Yep.  Today would be one of those days.  From the physical to the emotional – I am shot.  And it is only the BEGINNING of the week!

We walked today, my mom, my friend and I.  When Mom picked me up this morning we were both a little grumpy.  then we both cried a little.  It just seemed wrong heading out without Meghan.  But I took some solace in the fact that when I kissed her at 6:30 AM her skin was blessedly cool to the touch.  Maybe it was over.

So we picked up our  friend, and determined to enjoy the sunshine, we were in central Park a few minutes after 7.  Professionals by now, we do all of our shopping, and gathering of “free stuff,”  then we walk it to the car so we can race pretty much unencumbered.  And Meghan, for having not been there, made out quite well in a wide array of paid items and “free stuff.”  Well deserved!

The starting line…

Manhattan was crowded as ever, but thanks to my aggressive little Mom we were up close to the front when the race began.  We moved aside to allow for the runners and then had a really enjoyable walk without the tight crowds we sometimes experience.  We got to chat and walk, and enjoy each other and the sunshine.

Holding the banners Meghan made for us

At the finish line. Aren’t we pretty in pink?  🙂

So after a fun and exhausting morning we headed home.  Meghan was so thrilled that we hadn’t forgotten about her.  I was less than thrilled to see her on the couch, a clear indicator that the fever returned.

So, just like that came the transformation from walker to Mom.  We started making plans for who would watch her Monday.  She reminded us about her friend, and ours, a neighbor who loves her like she is her own.  Meghan said, “Just ask Patty!”  So I did.  Patty will be here at 7:15.
Thinking it was all taken care of, we sent Meghan for a nap.  Restless a few minutes later, the thermometer revealed a scary 104.2.  Knowing what he would say, I had to call the pediatrician anyway.  That number is too high for me. So, he happened to be in his office and invited us to come in.  (I adore my pediatrician.)

He spent a few minutes sizing her up.  The Tylenol was starting to work and she was down to 103.7.  After an agonizing 20 minutes he sent us for blood work at a local ER.  I am not a big fan of the local hospitals, but thought perhaps a brief visit MIGHT be ok.  Not so much.

In the literally blood spattered walls of a tiny room with no access to TV or cell phone, we sat while they took 2 blood cultures and a CBC.  She admitted at 4 PM with a fever of 102.9.  They gave her a dose of Motrin.   We waited for the blood for almost 2 hours.  As I grew anxious they told me they were having trouble finding it.  Almost ready to leave, it turned up – with a terribly low white blood cell count, but nothing else noteworthy.  We left quickly, being discharged at 6:30 with 99.4, having learned/remembered 2 things.

1. It is not OK – even for a short visit, and

2. Motrin – Motrin – Motrin

We had a hard time deciding who got to shower first as we cleaned off the filth we had just been in.  Dinner, some TV, WINE(for me – not her!), and it was off to bed.  Fever free at 8:30.

Headed up now for the 11PM Clindamycin.  Who knows what tomorrow will bring? Every day is a great adventure!