Losing the Battle – to Win the War!

 

charliebrown-football

Friday’s thrilling adventure at Borough Hall ended as so many days do.  So excited to tell her story, so amazed by her experience I thought she’d be on the phone all night.

But as we walked up the street to the parking lot she whimpered.  “My knee.  The old pain.  How could it still hurt with the Celebrex?”

Good question, I mused, as I tossed her a cursory answer about the weather, and people’s joint’s aching.

I left out the part about how MOST of those achy people are at LEAST 40 – not 10.  But she knows that already. Can’t put much by her.

never never give up

We headed home, but as things often do here the downward spiral had begun, and it was a quick one.

I soaked her sore knee in an epsom salt bath for some relief, but the migraine that she had been battling all through school was starting to win.

By about 7:20 she told me she was going to bed.  Never a good sign.

No fever.  No signs of “illness,”  but we are frustratingly used to this.  There is nothing tangible that any doctor can seem to figure out as to where all this pain comes from.  Yet it does.  All over.  It’s real.  It’s torturous to watch, and it frustrates the free-spirited agile athlete trapped in this painful body.

She woke around 9:30 this morning.  I was already at the bank.  The text simply said “headache.”  My husband is a man of few words.

When I got home at 11 to take her to her 12:00 appointment she was in a dark bedroom moaning in pain while Felix rubbed her head.

We tried some saline, some food, her morning pills.  No success.  No appointment.

I ran to the party we planned to attend as a family, to wish one of our favorite 5 year-olds a Happy Birthday.

I woke her at 2:30 like she asked.  The CYO meet was at 4.  The highlight of her week.

We tried a warm shower.  More saline.

“I just can’t do it,” she half whispered, half screamed.  “WHAT IS THE MATTER WITH ME?”

My stomach sank.  That was the proof positive that things were not improving.  She looks forward to every one of those meets.

After reassuring her that it’s nothing she’s done, or does… she told me to text her coach and tell him she was really sorry.

And she was.

Another fun event missed.  Another pleasure lost.

overwhelmed 4

 

My 10-year-old amazes, impresses and consoles me, as she says, “Cowden’s may have won the battle today – but it won’t win the war.”

She spent the better part of the day in her bed – willing away the body pain and the headache.

She doesn’t want to feel like this.  And I have to tell you – she handles it pretty damned gracefully.

No one she met yesterday would have believed this was the same kid.  From a full on powerhouse of a conversation with a respected elected official, to barely being able to lift her head.

That’s how we roll here.

That’s where her sense of urgency comes from.  She NEEDS people to know the real deal.  Whether they want to or not.

small battles

It’s 2:30 AM Sunday.  They have been resting for hours.  I had to sort out the banking mess and the subsequent paperwork it generated this week.  I needed a new list.

See my mind is so often preoccupied that I forget… a lot.

Because deep in my nagging Mommy gut, I feel like there is more.  We are missing something.  And I hope its minor.  Or that I am wrong.

No one can explain all this pain.  And lots of people have had the chance to try.

People wonder how I stay so organized, or why.  I think it’s because I spend a lot of time waiting for the other shoe to drop.

I’m over making plans.  I get it.  We can try to commit to things in advance, but our acceptances will always be tentative.  We have to make our decisions in the moment.

The win/loss column waffles sometimes, but we will by the grace of God, the power of prayer, and our love for each other, come out on top.  Failure is not an option.

We are BEATINGCOWDENS.  We will!

winning or losing

“A Friend in Borough Hall”

Meghan received a special invitation a few weeks back.  She kept quiet about it – even though she was bursting at the seems.

On February 27th, as we were preparing for Rare Disease Day, Meghan met and shared her story with Borough President James Oddo.  They hit it off instantly, and spoke like old friends for quite some time before he broke away to introduce the “Readers are Leaders” Campaign to our school.

More about their meeting here:

https://beatingcowdens.com/2014/02/27/rare-disease-day-2014-through-meghans-eyes/

Well after their extended conversation, the Borough President gave Meghan his Email address and reminded her she had a “friend in Borough Hall.”

They exchanged Emails at least once, and Meghan was THRILLED to receive an invitation to sit with the Borough President AT Borough Hall – 4PM, March 28th.

And the make the whole thing even more exciting, her efforts on advocacy and awareness and fundraising earned her the nomination for NY1 “Staten Islander of the Week.” (More on that segment which will air next Friday to follow.)

We arrived early, a rarity for us, but this was a REALLY big deal.  Meghan had carefully selected a few gifts for the Borough President which were tucked in my bag.  She proudly donned her “previvor” tee, and we sat anxiously in the comfortable waiting room.

This kid is clearly a "FORCE" to be reckoned with!
This kid is clearly a “FORCE” to be reckoned with!

We were given a tour of the basement and first floors, and showered with some gifts by “AJ.”  A giant help, and a generally nice guy.

Borough hall7

 

Meghan and "AJ" our helpful tour guide!
Meghan and “AJ” our helpful tour guide!

 

 

 

Then, it was time.

Meghan and I were  greeted with hugs by our warm and extremely genuine Borough President.  He repeatedly introduced Meghan as his friend.  He told stories of how she inspires him.  His staff and constituents walked in and out, joined the conversation, and came and went, as if a 10 year old in the office was a normal occurrence.  They talked about health and advocacy, about her denim ribbon necklace, and her Cowden’s Syndrome Awareness card. They talked about her surgeries and her medical struggles, but also about reading, and literature, and the healing power of dogs.  They have quite a lot in common and my heart sang to watch my 10 year old in the arm chair hold her own with a well-respected politician as if they had been friends for years.

borough hall2

 

Borough hall4

The NY1 interview was comfortable.  She speaks clearly, and flashes an award winning smile.

Borough hall3

Meghan gave Borough President a rock with the word “courage” in it, after he shared a touching story with her.

courage stone

He reminded her if she needs anything, she is to contact him directly.  And as the year goes on as she thinks of new ways to spread the word about Rare Diseases, he will help in any way he can.

Her eyes brightened.  Her goals got larger.

“You can be angry, or you can DO something,  So I decided to DO something,” she told the reporter.

And she did.

And she will.

Watch out world.

Borough hall5

 

Thank you Borough President Oddo.  Staten Island is in good hands.  You are one of the good guys.

Sometimes I forget

Sometimes-I-Forget

Sometimes I forget that Cowden’s Syndrome is not just Meghan’s – it’s mine. If I am to be precise, it is Meghan’s BECAUSE of me.  And I say that not out of guilt, but more as a point of fact. And I had plenty of time to think about THAT – and the rest of the week – in the MRI this morning. mri_machine Last summer when I saw the oncologist, and the surgeon about the 4 sizable vascular tumors on my spleen, they were unsettled.  I fought hard for my spleen.  I felt I owed in to my emptying insides, currently missing my uterus and ovaries.  I “won” a 9 month reprieve.  And not the sentence is up for review.

So as I arrived at the facility at 9AM, and by the stroke of those angels, found on street parking in NYC, I dutifully filled out the intake papers.  Papers that, well between Meghan I, I have lost count of the number of times I have completed.

Any chance you might be pregnant? Asks the male technician who brought me back.  Even though I had written the date of my hysterectomy on the intake papers, I dutifully replied, No.  Not that I ever WANTED to be pregnant again, but you know sometimes they could read…

Any implants in your body?  Metal, I asked?  No, ANY as he clutches the paper I spent 15 minutes completing – unread.  Yes, I have breast implants – a double mastectomy 2 years ago.  I gestured toward my purposely selected “NO, They’re not real – the real ones tried to kill me” shirt.  Not even a smile. no they aren't real Why are you having this exam?   By now I am ready to scream JUST READ!  But I know better.  I have played the game too often, and the man you yell at now could be the one inserting your IV in 10 minutes. Because there are 4 tumors on my spleen that are being monitored.

HOW DID YOU FIND THOSE?  asked the non- reader. Well, I have Cowden’s Syndrome – and we tend to grow tumors.  So they were found accidentally during another scan.

Oh.

That was the end of the medical talk.  Maybe the words “Cowden’s Syndrome” stumped him.  Just as well.  Directions on what to take off and what to leave on.  Locker key in hand, I was led up the stairs by the non-reader to the tiniest MRI machine I have ever seen.  (and I have seen quite a few.)  Meghan did some time in this machine during the 3 hour MRI debacle of her hand last summer.  I felt a wave of nausea and I am not typically too freaked by these.

“How did I end up in the tiny magnet?” The non-reader, still with me, grunted that I was the thinnest one in the waiting room.

 Not sure if that was a backwards compliment.  Thank you ISAGENIX – I think. isalean-bar-chocolate Grateful I had held my tongue it became apparent that the non-reader and I were in this together.  As he told me to lay down so he could start my IV.  I sat straight up.  My daughter gets a few things from me.  I sat up and had the IV placed so the toxic gadolinium could drip slowly though my body.  I laid down, closed my eyes and kept them closed the whole time.  I am pretty sure my nose would’ve been almost at the top.

And as I spent 30 minutes amid the noise and banging… “Breathe in… breathe out… stop breathing.  Breathe normal.” breathe stone My mind wandered.  I hadn’t given much thought to the MRI, or the reality that it COULD indicate growing tumors, and another surgery.  For so many reasons I have blocked the thought.  But, now its too late.  It’s like telling a secret.  The images have been shot.  The report will be read next week.  The reality that already is has been exposed, and I just get to wait and see.  Cowden’s Syndrome.  We grow things.  It’s what we do.

I am grateful maybe, for the insane pace of life.  For the full time job.  For the daughter who swims, and has PT and doctors galore.  For the car that won’t go into gear – the 1996 that has likely seen its last trip – but can’t be replaced right now.  For the paperwork that keeps me on my toes, and sometimes drowning a bit.  For the letters that need writing, and the never ending list of phone calls that need to be made. time struggle I am grateful even for the “calm” day, when we didn’t have much to do – until I noticed a bulge in the sidewall of the tire Thursday.  So I grumbled a bit, then thanked my angels and headed off to Costco, where they put on the donut and told me to come back Friday. I did, and the tire is new.  The car is safe.

So I logged onto my online bill pay to see what had cleared and got the shock of my life as the zero balance hopped off the page.  Phone in hand immediately calling my bank.  Apparently it only took someone a day to extract $2000 from my life, and start a cycle of more unending paperwork.

Two hours at the bank yesterday, an hour at the Police Station. My only wish for the dimwit who decided to pay his credit card bills with my money is that if he REALLY wants to be me – he takes the whole deal. The doctors, the tests, the tumors, the bills, the anxiety, the WHOLE thing. wind After all, its’s only fair… if you want to take someone’s identity – you should knwo what you are getting into. Sometimes I forget I have Cowden’s Syndrome.  I am always sure Cowden’s Syndrome doesn’t have me.  There are too many other things vying for my attention. breathe As the non-reader said, “Breathe in… Breathe out…. Stop Breathing.  Breathe Normal.  OK your test is finished.” HA!  If only he knew…

Today

today

In the spirit of one day at a time… today she feels well.

Today homework is already done.

Today her stress level is low.

Today she swims in the water like the fish she longs to be.

Today as I sit poolside with my computer, I can watch her laugh and smile with her teammates.

Today the less rigorous of the two practices, her CYO team comes first – but she is sure she can manage a double practice.

one-ste-at-a-time

Of course about 7 days ago we raised the Celebrex back to its (in my opinion) too high dose.

No one can figure out why the drug works for her, but it does.  And I am grateful, but scared all at the same time.  The list of medicine grows.  The knowledge of Cowden’s Syndrome remains spotty at best.

We know of the cancer risks, but the chronic pain, the low endurance, the vascular issues, the migraines….

One of our doctors theorizes that the Celebrex has kept her AVM in her knee from acting up.  Given the potential side effects of Celebrex I think it’s the medical equivalent of robbing Peter to pay Paul.

Sometimes I feel like with all the doctors we see, there is still no one minding the store.  We travel between specialists, between symptoms, between surgery and recovery.

The blood for the thyroid won’t be drawn for a month.  She slept 14 hours Friday night and another 12 Saturday night.  No major plans for us for a while.

The throat clearing never stopped with the thyroid removal, and I am flat our unsure who to even ask.

Sometimes I like to play mind games, and forget about Cowden’s all together.  I daydream a bit…

one-day-at-a-time

And then I remind myself that every illness, every experience, every event that occurs in our lives helps to define us and make us who we are supposed to be.  Like that ‘ever changing puzzle” my Dad used to tell me about.

And I think of my friends and family.  They are contending with diagnoses new and old.  None of them fun.  I would never say to them that experience shapes who we are.  That is a personal belief that the wrong person just might deck me for.

Especially on my heart is my internet friend from Australia.  Never have I felt so helpless as her daughter endures multiple brain surgeries and I am 12 hours and several continents away.

You Never Know How Strong You Are Until Being Strong Is The Only Choice You Have

Today.  Today my girl feels good.

Today I will do as I have been taught and let tomorrow worry about itself.

Today we are BEATINGCOWDENS!

good-live-one-day-at-a-time1

Keep Swimming… Just Keep Swimming

This one is a favorite of a dear internet friend :-)
This one is a favorite of a dear internet friend 🙂

This image has been on my mind all week.  Truth be told there is an awful lot on my mind,  and I apologize that most of it is likely to come out jumbled.  When I don’t get to the computer regularly there is all this stream of consciousness stuff…

invisible illness 4 dumptruck

My girl feels cruddy.  And I know, “its a big surgery,” and “it takes time to even things out.”  But it really stinks.  Her thyroid numbers are way out of whack.  The endocrinologist is absent… most of the time, and even if he couldn’t answer my questions, I’d like to be able to ask them.  If my thyroid numbers were as wacky as hers you’d be scraping me off the floor.  Here comes the crazy mom – trying to restrain myself for one more blood work cycle before I fire him too.  Good thing I live in a big city.  I might well run out of doctors otherwise.

It is so hard to watch her  – feeling betrayed by her own body.

She is bright.  And kind.  And super rational.  She gets the whole idea that people have it worse.  She is grounded.

But sometimes she is 10.  And she doesn’t understand why she can’t keep up.  Cognitively she can dance.  But physically…

She has to decide on a Friday if we are busy on Saturday morning.  This way she knows if she can play gym.  She gets through the gym period, and often has the time of her life… but we have to block out hours on Saturday to recover.  She played last week.  She had the time of her life.  Good thing the school staff doesn’t have to watch her get out of bed on Saturday.

And running.  How she LOVES to run.  And she’s fast.  But she can’t.  Not for long anyway.  Tendonitis, inflammation.  And forget it this week as we TRIED to lower the Celebrex.

Never mind the swimming.  She belongs to a team that practices 4 times a week.  On a good week we get there twice.  Not for lack of trying, but exhaustion gets in the way.  It is CYO season now, so she is with a more recreational team too.  Some fun times.  But she wants to be faster.  And she could be.  But her body betrays her.  And it makes her angry.

And now the headache.  The migraine  returned 2 days ago despite the recent medication increase.  She is just so very tired.  The neurologist called me tonight.  Increase the Celebrex.  See if that helps.  So much for less medicine.  Let’s pray for relief.

Hope-can-grow-from-the-soil-of-illness

I think alot about the others.  I think about the other’s with RARE Diseases.  I think about the ones less fortunate than us.

I also think about the other’s with Cowden’s Syndrome.  I have never met them – any of them except my own girl.  But, we “know” quite a few.  There are some I keep in touch with on an individual basis, a few Meghan corresponds with, and the bulk of them come from a Facebook group for Cowden’s sufferers.  We share experiences and ideas, and successes and disappointments.  We toss things out to each other before the rest of the world.  We speak safely to people who “get it.”  And although even among us our symptoms vary widely, and I believe a lack of research keeps us from being sure what is Cowden’s related, they are my best support.

I often go to bed and wake worried about these people I’ve never met.  I think about their physical struggles, and their family struggles.  I pray for them when they have tests, and surgeries, and they do the same for us.  People could argue they aren’t “real” friends.  I would have to disagree.  They give me hope.

I

power-of-persistence

Then there are days like yesterday, when you arrive at home after 14 hours at work to find a package on the counter.  And inside the package are jeans for Meghan and I.  Carefully sewn on each rear pocket is the denim ribbon symbol.  Also in the package was a bag “Hope, It’s in our Genes.”  Yep.  It sure is.  A friend of my sister’s.  Inspired my some crazy words she’s read here.  Go figure.  Grateful.

Make-The-Best-Of-Everything

And there are the events coming up.  The fifth grade events.  The ones where she will try her best to fit in.  The ones where her PTA has carefully worked behind the scenes to help her feel “normal” as they serve her dinner at the Father Daughter Dance, and the Fifth Grade Dance.  The trip that someone will have to come to – because there won’t be any safe food there, and the growing realization that so much socialization in life revolves around food.  Just another way to feel different.  But she plugs along.  Keeps that smile.  stays focused on the good as best she can.  Because she is acutely aware that there is a lot of good.  And painfully aware that things are fleeting.

running away

We miss my father.  It’s only been a few months, but every day seems to contain a bill, or a banking issue, or a quest to sort through the photos left behind so I can copy them for my siblings and get about the business of sharing them with the world.  There is a glitch in each direction.  No major problems.  Always just a series of minor ones.  He may not have been always around, but the time he was was powerful.  Maybe I keep myself too busy. Maybe I worry about tasks insignificant to others.  But I do, we do what we can to keep his memory alive.  We talk about reality, and we keep our most special missions close to our hearts.

Life's not fair

There should be sunshine and roses.  But there isn’t.  Well maybe there is… if we look hard enough.  All I seem to hear are stories of tragedy, heartache and pain.  In my own family, and in general conversation there are serious illnesses, untimely death, suffering, pain, and sadness.  I don’t profess to know the grand plan.  Not for a moment.  And I am sure its better that way.    I have only learned to find the blessings I can in whatever I can, as frequently as I can.  That is what keeps me sane.

I am far from perfect at this.  FAR from perfect.  But I – like all of us, am a work in progress.  So as the days sometimes seem insurmountable…  I remind myself, and my girl – that we have to follow Dory’s advice…

just_keep_swimming__3-334182

Happy 2nd “Boob Day!”

My math mind is full of numbers.  It is full of lots of things actually, and sometimes I wish I could get a few of them out… quite a few.

I am pretty good – although not perfect- with dates.

Today marks three months since my father died.  Flying free with the angels I am sure, yet I miss him.  A lot.  A blink of an eye, and an eternity.

Tomorrow is my nephew’s birthday.  He will be 6.

I remember his 4th birthday quite clearly, although I didn’t see him that day either.

On March 5th in 2012 I had the “prophylactic” bilateral mastectomy.  The one that ended up being stage 1 DCIS.  Quite the surprise party.

Happy Boob Day

And while I don’t even miss my old boobs, the new ones get scrutinized a lot more than the old ones.  Well meaning surgeons, they say things like “that kind of volume falling away is normal,”  or “we can even that out whenever you want.”  The thought of someone coming near me again with a scalpel right now makes me ill.  They will have their chance – years from now when these girls have to be replaced.  Maybe then I will have time to care more.

The last 2 years have been a whirlwind.  Well…maybe even before that.  The scope of the changes in our lives in recent years require more than I can muster in a 10 PM post.  But, being a numbers person…

2nd-birthday

Between Meghan and I we have had 5 surgeries in the last 2 years.  She has me beat 3 to 2.  But, I have lost more body parts.  I am down 2 breasts, a uterus and 2 ovaries.  She lost her thyroid, and a vascular cyst in her hand.

I am still crossing my fingers about my spleen.  That one’s up for MRI in April.  Hoping the 4 tumors there are behaving.

spleen

There comes a point where you have to laugh I guess.  People think “Oh no! A mastectomy!!”

I think – “Whatever it takes…”  But then again I had a pretty good teacher. (XO MOM)

I guess it’s all about perspective.

Meghan is really into identity, and figuring out where she belongs.  This week I bought her a “Previvor” T shirt.  She was thrilled to wear it to school today.  She takes the opportunity to explain genetic cancer risks whenever she can.  While I am happy she is confident I shudder at reality.

This is only stage 1 in her life as a previvor, staying one step ahead of genetic cancer risks looming large.  This is only the beginning.

We run from doctor to doctor.  We alternate surgeries.  We try to laugh in between as we deal with the rest of life.  Time is very difficult to balance.  The constant running to doctors and the anxiety of waiting for them to find “something” can literally make you insane.

time struggle

If you let them.

And I think that’s probably the key.  And the message.

I am overwhelmed this week.  Really fried.  Having a tough time keeping it all together.

Then I think…

I was ahead of thyroid cancer 20 years ago before I knew the depth of the risk.

I am 2 years beyond the threat of breast cancer.

My girl is weeks past the looming thyroid cancer that threatened her.

Two years.  New boobs.  No sagging on this 40 something gal.

Plus I am a HELL of a lot better off than I was two years ago at this time!

Ash Wednesday.  Never raised to “give up” for Lent.  Rather to use it as a time for focus.

Time to get out of this funk.  Forget November.  Time to be thankful is right now.

And today I am thankful for this little girl whose diagnosis saved my life.

My body may be 40, but my boobs are only 2!

Thankful to God and this little chick!

This kid is clearly a "FORCE" to be reckoned with!
This kid is clearly a “FORCE” to be reckoned with!

FORCE