Kid of Achievement!

Published on November 12, 2014November 12, 2014 by beatingcowdens4 Comments

Today I turned 41. And while I am incredibly grateful for the gift of life, and for “More Birthdays,” as the American Cancer Society once put it, my birthday holds all sorts of emotional challenges for me.

I have a memory for dates. And seasons. And events. And people. Especially people I love a lot. And 23 years ago on this November day, my beautiful 6 year old cousin Meghan was invited to dance with the angels. Childhood Leukemia weakened her body so, that she was not to stay here physically. Yet on my 18th birthday I got the gift of the most spectacular guardian angel – and her name and her spirit live on in my girl. Even with all the good, the day messes with me. I tried explaining it to my Meghan last night, and the best I could give her was – 23 years become 23 days sometimes. The pain just gets a whole lot more fresh.

And Grandma, Dad’s Mom got her wings just a few weeks ago. After 88 years and a life well-lived, it was still tough to see her go. Not even a year since Dad…

And last November 12th, on my 40th, my Dad was in the middle of what was to be the fight of his life. We spent it together. An unsavory appointment, and some legal crap I wish never had to be.

And this year a dear, compassionate, kind-hearted, fun-loving relative sits, so close to the end of his life here on earth. My heart just gets full.

So, it came as a pleasant surprise last week when my cell phone rang and it was Gina from the Staten Island Children’s Museum, telling me that Meghan had been selected as one of this year’s “Kid of Achievement” honorees, for her advocacy work in the community. The luncheon was to be held on November 12th.

“Of course we’ll be there.” And I couldn’t wait to share the news with her.

We kept kind of quiet while she prepared her speech, and I sent her to school this morning with her backpack and her speech and a pretty dress. Quite a swap from her typical sweats.

We arrived at the Hilton Garden at 11:15, sized up the room that we will be in for our fundraiser on February 15, 2015, and checked out the raffles. We met the other honoree, a lovely young woman being honored for her work with Project Homefront. The tables filled in and the event began.

When Meghan was introduced for this award, her advocacy was the focus. Her nominee(s) knew her history. They knew of her work, and her goals.

She delivered this speech with incredible poise.

When my mom got the call that I received this award, I was thrilled. All of my advocacy began with me wanting to make a difference. I am so honored, and humbled to realize that I am.

I was diagnosed in 2011 with a rare genetic disorder called Cowden’s Syndrome. It affects 1 in 200,000 people and it starts from a broken PTEN gene. The PTEN gene is the tumor suppressor. The PTEN gene prevents benign and cancerous tumors, but since mine is broken I have a higher chance of getting these things.

My Mom was diagnosed weeks after me. A few months after that she was diagnosed with early stage breast cancer. She had some pink ribbons around the house, and she got a pink ribbon Pandora necklace.

I knew about the gold ribbon for childhood cancer, and the puzzle piece for autism. I knew there were many others, and that all these disorders had a symbol, and with a symbol comes a voice. I had many medical issues, and went to the doctor all the time. I knew there had to be symbol for people/kids like me; kids who’ve had eleven surgeries in eleven years, kids who’ve had countless tests and are treated like human pincushions. Imagine, all this happens to prevent cancer. There is no simple solution, only a constant set of routine poking, prodding, tests, surgeries and more!

We kept looking for a symbol. We found one when we came across the Global Genes Project. They stand for all rare and genetic disorders, their symbol is the denim ribbon, and their slogan is “Hope, it’s in our genes.” But, there was not a necklace, no jewelry. There was nothing to wear to help me show people, and tell the world about genetic disorders.

I asked my parents if we could get something made, and we did. My parents found a compassionate and caring jeweler who created the mold for the necklace I am wearing today. We reached out to the Global Genes Project again and again, in hopes they would sell the necklace too. Recently, they put a similar necklace on their market, and I can’t wait for it to become as popular as some of the popular pieces I have come to know.

Rare and genetic diseases are out there. Most are very rare, but there are over 7,000 of them. More work needs to be done individually and collectively, to get them the funding they need

In 2013, just about 18 months after our diagnoses, we celebrated “Rare Disease Day” which is February 29^th – the rarest day- or February 28^th on non-leap years, by handing out denim ribbons at our schools. We had assemblies, and I got to talk to my peers about what it was like to live with a rare disease every day.

I have had 4 knee surgeries for a vascular malformation in my right knee. I have a good deal of pain in my body, there, and pretty much all over. Some days I feel great, and other days I can’t get too far. One day in the spring of 2013, my mom was pushing me in a wheelchair to an appointment. I was annoyed by the number of people staring at me and talking about me. I heard things like, “lazy,” and “she’s not sick.” I decided I could be angry, or I could do something. While I definitely spent some time through the years being angry at some of the things – like running- that Cowden’s had taken from me, I decided instead I was going to DO something.

That night my Dad helped me design a business card that very briefly explains Cowden’s Syndrome. I have handed out hundreds to those who stare, and to those who just care. I like to spread the word, one card at a time.

This card was created out of her need to "teach" others about Cowden's Syndrome. — This card was created out of her need to “teach” others about Cowden’s Syndrome.

This year, right before Rare Disease Day in February, I had my thyroid removed. Thyroid cancer is very common in young people with Cowden’s Syndrome. My thyroid had been watched since my diagnosis, and it went from having 4 nodules in 2011 to 16 nodules and 3 precancerous tumors in 2014. I was fortunate, but the surgery was rotten, and it has been hard getting the medicine quite right. I have been called a “Previvor,” which is someone who has an organ removed before the genetic cancer that is looming has a chance to strike.

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

This year, for Rare Disease Day, I decided to raise some money. We sold T-Shirts at my school and we had a fundraiser. The money all went to the Global Genes Project, and it felt really good.

At my old school, in February, I also met the Borough President. He took such an interest in my story, he made me feel awesome. I have visited Borough Hall a few times, and love talking with him. He has encouraged me to keep dreaming bigger and I will.

Two weeks ago my Mom and I signed a contract with the Hilton for a fund raising breakfast on February 15, 2015. We will be raising money for the Global Genes Project, and the PTEN foundation. The PTEN foundation is a new organization, working just for PTEN disorders like Cowden’s Syndrome. We hope to have raffles, and T shirts for sale. We plan to have music and fin.

We set up ticket sales through eventbrite, and we called it “Beating Cowden’s First Annual Jeans for Rare Jeans Fundraiser.” Sales are open to anyone who wants to come support two great causes.

I am on a mission to spread awareness and raise funds for diseases people know too little about. I will not be satisfied until each of them has the recognition they need, and the cure they deserve.

Thank you again for this award, and for encouraging me to continue my mission.

Here is a video of her speech.

And when she was met with a standing ovation there were tears in my eyes. Tears of pride.

One after another people approached her, and complimented her.

Not a single one would have known the strength it took for her to walk in the room today. The pain was unbearable. But she did it. With grace and a smile.

And in addition to the compliments, there were offers to help. Real, genuine offers.

We will Email some of our new friends tonight. And with their help, in February we will blow this fund raiser out of the water.

Kid of Achievement indeed.

World, you haven’t seen anything yet!

Here’s the link to our local paper….

http://www.silive.com/westshore/index.ssf/2014/11/staten_island_childrens_museum.html#incart_river

And while you’re at it – book your tickets for February 15th!

https://www.eventbrite.com/e/beating-cowdens-first-annual-jeans-for-rare-genes-fundraiser-tickets-14130024283

Rare Disease Day 2014 – Through Meghan’s Eyes

Published on February 27, 2014 by beatingcowdens11 Comments

Yesterday, our local paper published an article about Meghan and Rare Disease Day.

http://www.silive.com/news/index.ssf/2014/02/post_738.html

Today, the Borough President came to our school about a 4th Grade reading program, and was so interested in Meghan’s story he took the time to talk to her. She was so thrilled by his genuine nature, and his true interest in her. Not too shabby of a smile for a kid just 2 weeks post op from a complete thyroidectomy!

Meghan chatting with Borough President Oddo!

Today, Meghan addressed the school about what it was like to live with a Rare Disease. She spoke eloquently and passionately. The students were phenomenal. She was exceptionally BRAVE.

This is her speech.

Living with Cowden’s Syndrome

Every day I have pain. Cowden’s is a Rare Disease that never gives you a break and always keeps you on your toes. Cowden’s is a blessing and a curse. I am grateful to Cowden’s, for it has made me who I am today. Cowden’s is also a curse, to have to go through what I do. I DON’T want others to have to do what I do. NO ONE should have to endure the countless doctor’s appointments, tests, hospitalizations, and surgeries that a person with Cowden’s Syndrome has to endure.

Today is February 28th. To many people today is just Friday, but to others, February 28th is Rare Disease Day. Rare Disease Day is to raise awareness about Rare Diseases world wide. Rare Diseases are an issue. 50 percent of Rare Diseases affect children. 300 million of the earth’s population has a Rare Disease. There are over 7,000 Rare Diseases and less than 400 treatments with, currently NO CURES! With Rare Diseases you need all different types of treatments. Treatments and surgeries can be helpful, but they don’t fix the problem permanently. Rare Diseases aren’t contagious. If someone in your family, or a friend of yours, has a Rare Disease, that doesn’t mean that you will have one.

We chose the movie BRAVE for tonight’s movie night on purpose. When you have a Rare Disease you have to be brave. Individuality is very important. No matter who you are, EMBRACE it and be BRAVE. Be an individual. Being BRAVE is about not being scared to be you. Don’t just follow other people. BE a leader, be BRAVE! You are who you are so why not recognize that and make the best of it? Explore and be BRAVE.

Until September of 2011 I did not know I had this Rare Disease, or ANY Rare Disease. All I knew was that my body was far from NORMAL. All I could do was be BRAVE. Every single second of every single day all I CAN do is be BRAVE. You never know what is lurking around the corner. All you can do is prepare yourself and stand up tall against all odds. All you can do is be BRAVE.

Once I learned that I had Cowden’s Syndrome I researched it. It means that my PTEN gene is broken. Your body is made up of all sorts of G-E-N-E-S not J-E-A-N-S like the ones you wear. PTEN is the gene in your body that keeps your body from growing tumors. With a broken PTEN gene, I learned that my body was more likely than other people’s to grow tumors, and that sometimes those tumors could be cancer. Imagine how scared I was, and how I needed to be BRAVE. Cowden’s Syndrome has different versions of the same symptoms on each person. 1 in 200,000 people have Cowden’s Syndrome. Another thing I thought was interesting was that 80 percent of rare diseases are from genetic origin.

I’ve always wanted something to represent me. I knew there was the gold ribbon for Childhood Cancer, the pink ribbon for Breast Cancer, so on and so on. I NEEDED something to represent me. That is why I have this first of a kind denim ribbon necklace. It is the first of its mold and has a ONE OF A KIND inscription on the back. My mom and dad have one too. The support I get from my family is incredibly inspiring. I REALLY want to make more people aware, as you can see.

All you can do with Rare Diseases can do is be BRAVE. Look danger, sadness, disappointments, and diagnoses in the face. Be prepared. Don’t let it break you. For each and every Rare Disease, stand up to the challenges it brings, and don’t let them break you. Let it make you stronger.

When I’m here at school I put on a mask. A mask of happiness, of making people think that I can brush everything away. No one knows that under that mask is a girl with the weight of the world on her shoulders. All I can do is be BRAVE. I cannot do what everyone else can. I struggle to fit in and find acceptance in the world. All I can rely on to make me smile and laugh are my friends. They are part of the reason that I can keep up the mask. I will never let anyone know what I think. That is who I am and what I do. NEVER judge someone by what they look on the outside. I am a perfect example of this.

Be KIND, be AWARE, Rare Diseases are EVERYWHERE!

And then – as if I wasn’t proud enough…. she put this video together all by herself….

Such a proud Mom! Spreading the word…. LOVE this kid.

Can’t wait until tomorrow for MOVIE NIGHT!

And the body says… SLOW DOWN!

Published on February 23, 2014 by beatingcowdens5 Comments

So it’s almost 2 AM on Sunday. And I have to say, I didn’t see this one coming.

This is the part where I remind people over and over that just because you CAN live without a body part, doesn’t mean your body doesn’t miss it when its gone. I mean we were made in one piece…

So the recovery was going pretty well, but that’s mostly due to her feisty determination.

But there is a point where you look back over the last 9 days and consider a few major things. That point came at about 4, and 5 , and 6 this afternoon as she was violently and quickly vomiting herself into dehydration.

If you consider that there was the stress and worry of HOW we were going to get to the surgery, then the brief pleasant stay at Ronald McDonald House, followed by a 4 hour surgical delay, coupled with a less than smooth hospital stay that had its share of communication issues… you start to get a sense of the stress that has been this February “vacation.”

Sorry we didn't send a post card, but it was a blast ... — Sorry we didn’t send a post card, but it was a blast …

Really it extends way farther back than that… but rather than bore you again with all the back story I’ll stay current.

So on the 13th the thyroid came out. It was a three hour procedure with lots of general anesthesia junk for my pretty organic girl. Then there was the whole removing an actual PART of her body. And then there was the introduction of the synthetic replacement hormone. And there was lots of fidgeting with calcium levels. And there were narcotic pain meds for a few days too to keep the edge off.

And at some point around 4 today her body had had enough.

I love when Meghan vomits and people say, “Is she sick?” And I say “nope.” Rarely, (knock on wood – NOW please) does Meghan get a “stomach virus,” but she’s not a stranger to vomiting. She vomits when her body has had enough.

And today, her stomach hurt. Her knees hurt. Her hips hurt. Today I couldn’t keep the pedialyte in cause it all happened so fast. And, since there’s a first time for everything – we actually had to go to the ER for fluids. Except she’s Meghan. And she’s only a bit over a week post op. And they just wanted to be careful… so she’s asleep in the bed. I am typing away as I won’t even attempt to sleep until after the 3 AM meds.

And after the ER was over and we came up to the floor for a bed – in a place we have spent some time before- we passed by the NICU where she started her life in 2003. While I was reflecting I looked at our nurse and thought she looked a little familiar. Once she told me her name I was incredibly grateful I had been kind to her son when he was in my 5th grade class some (AHEM 13 – or more) years ago. You never know when you’ll need Karma on your side…

And now this poor, lovely nurse was left to contend with my daughter, reading package inserts and discussing medications before they were given. Meghan talks a lot. But I didn’t feel guilty about that part (GRIN.)

So the fluids kicked in and she began to perk up. She had time to share with the doctors and the nurse her denim ribbons, her Cowden’s card, AND her movie for RARE Disease Day. They want us to bring them some ribbons for the floor.

Me, I got my nutrients in my – thank goodness I always stuff a meal bar and an EShot into my bag… ALWAYS. That knocked that pounding headache right out.

She bounces back. Quickly. But sometimes a little too well. I have to watch her. Determination can’t do it all. The body has to help too. And as strong and tough as she is, we all need to be reminded that, well she has this RARE Genetic Disorder called PTEN Hamartoma Tumor Syndrome… or Cowden’s Syndrome… and well, even though we may not always want to admit it – that darned syndrome can make life a little extra tricky.

Hope…

Published on January 29, 2014 by beatingcowdens1 Comment

“Hope” is the thing with feathers

“Hope” is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—

And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird
That kept so many warm—

I’ve heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me.

Emily Dickinson

Lots of talk about HOPE this month, as RARE DISEASE DAY approaches. The phrase “Hope, It’s in our Genes” has become one my family relies on when we struggle. Hope is complicated. Or its simple. I guess it depends on how you look at it. Regardless, its necessary- for all people at all times.

I can not imagine living my own life devoid of HOPE. FAITH and HOPE work hand in hand here, and at our most desperate hours one is always there to shine a light in the darkness. I am convinced HOPE is there, even in the darkest hours. When we look. Here’s what HOPE looks like at our house.

HOPE is the kiss of a dog when the tears just won’t stop.

HOPE is a hug, or an,” I love you.”

HOPE is an EMail or a text, or a phone call at just the right time, from the person you’d never expect.

HOPE is believing that it’s all going to be OK. Somehow – some way.

HOPE is pain relief, even if it’s fleeting.

HOPE is quality Physical Therapy.

HOPE is the friends, (and the people we barely know) who “Care about RARE” because of us.

HOPE is an answered letter from someone you’ve never met, whose willing to help – just because.

HOPE is laughter.

HOPE is medicine that works.

HOPE is butterfly kisses.

HOPE is the internet, and connections to old and new friends.

HOPE is family.

HOPE is knowing you’re not alone – ever.

HOPE is when that special thing you thought was lost forever… shows up out of nowhere.

HOPE is believing that the surgeon will have the right answer.

HOPE is confidence that you are doing the best you can.

HOPE is real.

HOPE is love.

HOPE – It’s in our Genes!

WHAT IS HOPE to you?

Getting out of my own way…

Published on January 23, 2014January 23, 2014 by beatingcowdens1 Comment

I am actively, consciously, deliberately, trying to get out of my own way.

I have hopes, goals, dreams, aspirations. I love my daughter, my husband and God and my family and friends.

I want to be stellar mom, an outstanding wife, and a good friend.

I want to be a Christian woman who leads by example.

I want to shout from the mountaintops about the organic superfood changing lives in my house, and giving us energy and clarity of mind we never thought possible.

I want to teach people about health and wealth and how they can go hand in hand.

But I am stuck.

Right in the middle of my own way.

We had Meghan to the neurologist today. We left Staten Island at 1:45 and traveled the approximately 17 miles to the appointment in Manhattan. It took an hour and a half. I just about worked myself into a migraine on the way.

But, fortunately, the torturous migraines of the fall are a memory. Controlled by a medication I would rather her not take. Today we got a dose increase, and something to help her sleep. It should be noted the ONLY side effect the neurologist would even discuss from the medication was drowsiness. HA! Not here. There’s my Meg… doing it her own way.

This was an easy appointment. We were home by 5:30 although wiped out by the journey – all of us. The follow-up is in a few months, the new script is in hand.

They are asleep.

I am sitting at the computer. Thinking. Researching. Typing. Organizing. Planning. Attacking everything. Accomplishing – not so much.

Today I called to reschedule the thyroid surgical consultation. Suddenly 5 weeks seems like a really long time. The tickle in the throat is troublesome. It turns into coughing when she gets nervous, and is only pacified into a tickle by the boxes of cough drops on my counter. I try to ignore the reality that we both know exists. I try to tell her it’s no big deal, and to casually ask her to show me where it bothers her.

“It’s not sore till I cough. It just feels weird – right here.”

And there on the right side of the thyroid is what has begun to feel like a small stone. I try not to let my imagination get the best of me as I picture it pushing on her windpipe.

“It’s fine,” I tell her. “We’ll just get the doctor to take a quick look.”

She’s not dumb. Not by any means. And that is a good deal of the problem. Gone are the days when I could lie through my teeth and protect her from the evils of Cowden’s Syndrome – lurking behind each corner, hiding under the bed, and in the closet. Now the monster is real. And it gives real life nightmares.

So in 2 weeks, on February 6th we will head to Sloan Kettering to meet the pediatric surgeon. No one can be sure what he will say. And I am not sure there is a statement he will make that will soothe me or make me happy.

And the waiting game continues. One appointment down. Two weeks till the next. Then on the 11th I have 3 and she has one. I still haven’t figured if its better to consolidate or spread them out. They just keep coming. One after another…

“Beatingcowdens” will suck out your energy if you let it.

But I won’t. That’s why I have gotten so involved in this superfood, and this fabulous company called Isagenix. Recently they named their 100th millionaire. A school guidance counselor from NJ with no network marketing experience. We three start every day with our shakes. We use the snacks and the meal bars, and the tea, and tonight they both took the melatonin spray to sleep. We are feeling better and better. So in the time I have at night, I listen to podcasts, I learn all I can. And I try to share with my family and friends that I am finally not that sickly little girl they knew. I try to share with them the health and wellness opportunities, and the vision for financial freedom. I am here. I am ready. If they will listen.

And its a good thing I am a master at multitasking, because there are lesson plans to write – for a subject I love across a LOT of grades. Trying every moment to be the best I can be.

As I sort through the last boxes from Dad’s apartment. And I laugh, and I smile, and I cry. As I make binders of beautiful 8×10 prints I found everywhere. As I sort through the photos on CD and prepare hard drives for my brother and sister. And I chuckle at the bills that come in, and I make contact with the members of his platoon in Vietnam, and his old friends – one at a time. Unearthing buried treasure from a man I loved dearly. Not a saint, but who is? And so much wiser than any of us really gave him credit for.

And I make list after list of the things I need to do. In the house, in life, on the computer… Supplements to order, new pants for my growing girl, laundry, and a haircut, and all sorts of other random yet necessary things.

I think about my friends who I love. The ones I never call, or barely talk to. The ones who I text instead of calling or visiting. I think of how busy our lives are… and for what?

Rare Disease Day is coming. February 28th. Our school is celebrating. Meghan is thrilled. There will be Tshirt sales, and a movie night, and proceeds to the “Global Genes Project.” It gives purpose. Hope. A distraction.

Somewhere in the midst of all this I have to stop and wonder. How do people do it?

Our lives have their own brand of busy – a medical type – which may be different than that of my friends, but it bears similarities. Over run. Overworked. Exhausted. Worried.

How do they get out of their own way? How do they manage to keep the balance of friendships and “play dates” for adults and kids? How do they get the laundry and the grocery shopping done, and still find time to play?

I think I am a pretty organized Mom. But yet – I need to use my time better. I won’t part with my writing. That’s therapy for me.

I’ve minimized the clutter in my house (just don’t look in the closets.) Now its time to minimize the clutter in my head.

Cowden’s Syndrome Awareness

Rare Disease Day

Doctors, surgery?

Isagenix – health and wealth

Reconnecting with old friends

Making the time to exercise… cause I like it.

FOCUS

Now if you’ll excuse me… I have to find my way out of this maze…

I’ve got work to do!

Puzzle Piece

Published on May 9, 2013May 10, 2013 by beatingcowdens3 Comments

I remember being much younger and loving puzzles. We would set them out on the table at home and everyone would take some time trying to get it going. They were big and had lots of pieces and were often slow going at first. Everything looked the same, and sometimes it could take hours to fit in a few pieces.

Then, over the next few days, and sometimes weeks, with everyone taking a turn, slowly the picture would start to take shape and the puzzle would come together. It was always so exciting once you could make out the features, and so much easier to plug in the missing pieces.

I remember the feeling of satisfaction as one would be completed. There was something especially gratifying about those last few pieces. It was that feeling of satisfaction. We set out minds to this. It took a few of us, but we got it done. We figured it out – together.

By now you can probably see where I am going with this.

Today marks one year since I wrote my first blog post in 2012.

In one year the posts I have written have been read over 30,000 times. People have stopped by to read some – or all of our journey with Cowden’s Syndrome.

I have met other Cowden’s Sufferers through this blog, and on the internet. I have received messages, and corresponded with quite a few. I have learned their stories, and heard about their puzzles.

I have also “met” a few with other puzzling disorders,figuring life out and getting by one day at a time.

I am ~~sometimes~~ forever humbled, and amazed by the odd and abstract idea that people who I don’t know have gotten to know us, and used us as pieces to help complete their own puzzles.

I noticed a link on my blog today from “pinterest.” Having never been to the website, I clicked the link to find a picture of my family. http://pinterest.com/pin/290974825894950598/

I was pleased that it was used in its proper context, and was mentioned in terms of rare diseases. But, I was still amazed. Someone had read, and linked, and…

Well, the possibilities are endless. Thank goodness for the internet.

Where else would I meet people from all over the world,. and swap stories about a genetic disorder with an occurence rate of 1 in 200,000? Where else would I find organizations like

PTEN World https://www.facebook.com/ptenworld?fref=ts

The Global Genes Project https://www.facebook.com/globalgenesproject?fref=ts

This last year of blogging has been an awakening for me. It has opened my eyes to so many other people, their stories, and the world at my fingertips. Since our diagnosis in the fall of 2011 it has become so important to become aware, to gain support, to advocate for others, and for ourselves.

I remember working on puzzles as a little girl. I remember that feeling of satisfaction when the puzzle was complete and the picture was clear.

I don’t do those kind of puzzles anymore.

Now I figure out how to prepare 2,000 denim ribbons and get them distributed on time for Rare Disease Day.

Now I work on helping my girl find her place in this world – trying to be a “regular” kid, yet undergoing so many more stressors than any 9 year old should.

I work on puzzles that lead us from one doctor to another, dropping them like leaves off the trees on a fall day.

I work on puzzling questions, and I persist until I get answers.

I get overwhelmed sometimes – looking for the pieces I can’t seem to find.

Sometimes I want the puzzle to have its edges all done, the way I learned. I want it to be neat. I would like all the matching colors to go together

But, that isn’t how life is designed to be. Not with Cowden’s Syndrome.

Not for any of us really.

Maybe it’s not a puzzle – but more of a domino game… branching off in so many different directions. Occasionally stopped by a dead end – only to find another path.

Or maybe it’s just a puzzle of an “atypical” sort. Not one that actually fits in a box. One that requires patience, time, dedication and focus.

In front of me tonight are 22 pages of blood work drawn on my daughter over the last month. There are some definite issues. My phone consult with her doctor is a week away. In the mean time I am left to try to put it together the best way that I can.

I handle each piece delicately, gingerly. I don’t want to damage anything, or miss anything either.

There is no picture, no model to duplicate. There are no directions. No guide. Just instincts. Prayer. Love and support of friends far and near.

Tonight I will study until I can figure out one more piece. Then there will be tomorrow.

The journey is long. The puzzle evolves. I am not going anywhere.

Thanks for sticking around.

Our Digital Footprint

Published on April 13, 2013 by beatingcowdensLeave a comment

Tomorrow Felix and I will be married 13 years. While in some ways 13 years seems like a long time – in other ways I sparsely remember that there was life before I married my best friend.

And as compatible as we are, anyone who knows us is aware that we are as different as day and night in so many ways. One of those ways is the internet.

I facebook. I blog. I Email. I communicate with people I know well, and people I have never met. He doesn’t. He communicates live and in person (and sometimes on the phone) with the small circle of people he loves.

In the world of digital footprints, I have to imagine that mine and Meghan’s are substantially larger than that of my husband. And with that knowledge comes the need to sometimes remind myself of what I already know – there is no privacy on the internet.

We live in a suburb of a big city – unique in the fact that 6 degrees of separation can easily be played – and usually can serve to connect “natives” in far less than 6 tries.

That means, that every post, every writing, every thought, every sentiment that I choose to make public will be read by people who know me, people don’t, people who like me, and people who don’t.

I have begun to “clean up” and clean out my private facebook account. Life is about balance. My husband wonders why I want to stay connected to people I don’t see or even know. Well, many of them hold a special place in my heart – whatever the reason. Many are very dear to me. But, some I really wouldn’t know if I passed them on the street. Do they care when my girl is at swim practice? Or that my anniversary is tomorrow? Or that we have a new church? Or a new school? The answer truly is – probably not.

So how does all this connect to Beating Cowden’s?

Well, here’s how I see it. I started this blog to raise awareness of a Rare Disease. – one that has changed my life and that of my daughter, and my whole family. I wanted to get the word out that this 1 in 200,000 disorder was wreaking havoc on our lives, and we are working to control it.

Then, as I became more educated, I wanted to expose people to the world of Rare Diseases. The reality that we are among the lucky ones has been a potent lesson.

I want people to know that Rare Diseases are not always visible. That even though we don’t “look sick,” the suffering is part of daily life.

These realities have made some people uncomfortable, and have brought some others closer to us. Lessons learned. Life changes.

So when I blog, I try to focus on my own experiences, but without fail they are intertwined with Meghan’s. What can I do to protect her? Not too much.

She wants this blog to continue. She is proud to be part of an awareness raising effort. So, I have given her editing privileges and the constant reminder that once I hit “publish” I can not take it back.

I think in some ways this level of awareness will help her – when she takes more control of her own digital footprint.

“Beating Cowden’s” is about our daily struggles – sometimes with doctors, our bodies, medical tests, surgeries, and just people in general.

I have thought so much about privacy, and how it is almost a work of fiction these days. I have worried about hurting people’s feelings on my private page – but I am starting to get over it.

If you make a conscious choice to put yourself out there – there has to be a purpose. And, you have to be willing to stand behind every word you type.

There is no privacy on the internet.

Beating Cowden’s will continue as a means to raise awareness of a virtually unheard of Rare Disease.

My own personal Facebook page will take a bit of an overhaul in the next few weeks.

Don’t take offense.

I am just getting our feet ready for spring!

Happy Birthday to my boobs!

Published on March 4, 2013March 4, 2013 by beatingcowdens12 Comments

Remember where you were a year ago?

I do.

A year ago this evening I was pacing the floors. Making sure Meghan was packed for school. Triple checking my hospital bag. Planning my last meal by midnight, and pacing the floors – quite sure I wouldn’t sleep.

I was right.

I hadn’t arrived at that moment in my life by accident. It was the result of years of breast biopsies for suspicious masses. MRIs, sonograms, mammograms – and a mother who was a bilateral breast cancer survivor. Not to mention my diagnosis of Cowden’s Syndrome that had been confirmed only months before I met the warm, caring, and decisive surgeon that was about to remove part of my body. Don’t wait till the summer – she somehow convinced me. March 5th. Get it done.

One year ago, on the morning of March 5th 2012, after vomiting repeatedly from terror, my husband and I left and headed to NYU hospital for my “prophylactic bilateral mastectomy.”

We checked in by 6 AM. I can remember every detail of the morning. It is imprinted in my subconsciousness. It may fade over time – but for now…

My brother in law called my cell phone by six. We prayed together. Then, I just focused on breathing.

Checking in takes forever. Everyone stopping in. Lots of waiting. I paced that small room so many times I swear my footprints are probably still there.

And my husband – my pillar of strength – just waited with me. When I wanted him to pay attention – he stopped and held my hand. When I wanted him to ignore me, he dutifully read comics on his iphone. I would not have wanted to be him.

I had to explain to the resident filling out the paper that I was not having “tissue expanders” put in. Well this was not an easy concept for him. Apparently that is just what everyone does. The expanders are placed during the mastectomy, and then “filled” until the tissue expands to the size you would like, and then the silicone is placed.

Well I had already had a long talk with my plastic surgeon. I had no desire to have giant boobs. Nope. I was sure.

She can keep her award... — She can keep her award…

At 38 years old, and the mother of a nervous 8 year old, all I wanted was to leave the hospital and not have to return for another surgery. (The sweet irony of that wasn’t realized until I returned 10 weeks later for my hysterectomy… but anyway)

I had convinced the plastic surgeon to use whatever silicone implant she could – and put them right in. After a lengthy discussion, she agreed. It was more important for me to get right home to Meghan.

This resident was having a hard time wrapping his head around this, but finally we got the papers right. They were to put in whatever one of these fit best – preferably a matched pair.

Finally it was time to head to the operating room.

I have had lots and lots of surgeries, but the thought that I was engaging in such a major procedure “prophylactic-ally” was literally making me weak at the knees. Fortunately I managed to hook up with an absolutely awesome surgeon/plastic surgeon team. Two women who are talented, compassionate, and understanding. They gave me the peace of mind I needed right before the anesthesia. The last words I recall before I woke up – “You’re doing the right thing.”

They expected a “clean easy procedure.” After all I had had an MRI just a month prior to confirm I was cancer free.

Recovery from anesthesia isn’t my forte, although I have improved with experience. I got to visit with my sister, and enjoy my husband.

The peace I felt after this surgery can not be understated. I was so relieved. The storm had been calmed. It was done.

I left the hospital about 28 hours later on March 6th. I couldn’t wait to see my girl. The drains were still in place and they would stay for another week, but the hardest of the hard work was done.

So, on March 5th – my boobs are officially a year old. At least that’s the day I adopted them.

And what a year it has been.

A week after my “prophylactic” mastectomy, I held in my hands a pathology report that clearly stated I had DCIS – early stage Breast Cancer. Among the other “precancerous” conditions embedded in that report was the reality that I no longer had to be concerned with the “what if?” It was done. I was OK. By the Grace of God alone – the cancer was out before it was ever a problem. And, whenever I doubt, or get angry or frustrated by our Cowden’s Syndrome journey, I am reminded of that moment. Without Meghan, and without her diagnosis. I would have never proceeded with such an aggressive surgery. God gave me my little girl, and spared my life. We will use that gift as often as we can.

The weeks of recovery went smoothly, with lots of help from mom.

And then it seemed – no sooner was I back at work, that I was being told by another surgeon that I NEEDED a complete hysterectomy – now. So, in May we went back. This time at least everything was benign.

This is the year that included 2 surgeries for Mom and a thyroid biopsy for Meghan. It included a car accident that I am still healing from. (And the very first thing I checked after I realized I had been in an accident was that my silicone was intact!)

It included Grandma’s fall, and ongoing recovery.

It included circumstances that caused me to step away from my church, and blessings that led me to a new one.

This year I laughed deep laughs, and I cried gut wrenching tears. I got re-acquainted with old friends, and I met new friends in support groups online.

This year I learned there are some benefits to small silicone boobs… (with no nipples!) I got to go bra-less for the first time in YEARS!

This year we vowed to make a difference,

This year we gave out over 2,000 denim ribbons, and taught a whole lot of people about Cowden’s Syndrome and Rare Diseases, and the Global Genes Project.

This year was only the beginning of the rest of our lives.

One year without my old boobs. One year with the new and improved CANCER FREE version. One year of countless blessings. One year of boobs that will never sag!

HAPPY BIRTHDAY TO MY BOOBS!

Cowden’s Syndrome – You’re NOT the boss of US!

Published on March 3, 2013March 3, 2013 by beatingcowdens1 Comment

“You’re not the boss of me!”

Sometimes little kids can be misguided. Sometimes, Mom, Dad, or teacher is in fact the BOSS of them. But that statement from the mouth of a child is the beginning of their move towards independent thought. And, if nurtured properly can lead to a productive, independent, determined adult.

That’s what we are getting at here.

You see I spend enough time around children, that their words and phrases sometimes stick with me. And this one is stuck with me this weekend. So I reflect how it applies to my 9 and a half year old daughter and my 39 and a half year old self.

See, even though Meghan is very good at realizing I am often the BOSS of her, she will not be easily ruled. And while I love her independence, I love more the fact that she remains respectful towards her father and I – and dare I say, all the adults she deals with. She, as an only child has lots of bosses, but I encourage her to rise up against the tyrant that is Cowden’s Syndrome – and she does.

If Cowden’s Syndrome were her boss, she would sit idly by while the pain persisted; in the knees, the ankle, the shoulder, the wrist or whatever joint it currently is attempting a choke hold on.

But, since its not – she goes to dance class on Monday, Swim practice on Tuesday, Music and Movement on Thursday, and Swim Meets on the weekend. She often cries in pain in the hours following these events. But never once does she talk of stopping.

You see, Cowden’s Syndrome is not the boss of her.

Cowden’s Syndrome would have her hide in a corner, ashamed of an “orphan” disease that no one can really understand. But hiding is not for my girl. Instead she asks for a denim ribbon necklace. She learns about the Global Genes Project, she understands “Rare Disease Day,” and she actively participates in the “Wear that you Care” campaign. She makes thousands of denim ribbons, and informational fliers. She gives 2 speeches at her school. She even wrote a book about it. HA! Don’t tell her no one really knows about Cowden’s Syndrome – because she will take it as a challenge, and fix it.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!" — A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

https://www.facebook.com/photo.php?v=10200149863021946 (To see Meghan’s speech)

Cowden’s Syndrome – with its biopsies and cancer risks would like to leave us terrified. Instead, we are empowered. Meghan got the anesthesia she needed and deserved, to have her last thyroid biopsy with dignity. The terror is gone. We will have anesthesia next time too. And, if the cancer hits – we are ready. We are empowered.

Cowden’s Syndrome – You’re NOT the boss of us.

You certainly don’t rule me. 85% risk of breast cancer – yeah, so? Endometrial cancer? Nope – don’t need that either. Thyroid cancer – half gone already, and checked every 6 months. Melanoma – nope. And annual skin exams just to be sure. Colonoscopy – did that. Clean enough to wait until 2015. My spleen – well. That’s still in limbo. But you know what? Whatever. I have stared down worse.

Just came back from my girl’s first swim meet. Time to relish in the satisfaction that something normal happened here today. We will handle the pain, with the smile of knowing – she’s pretty fast.

I know you’re staying Cowden’s Syndrome. I know we can’t ever get rid of you. But, seriously. Unpack in the basement closet and stay away from us.

Cowden’s Syndrome – You’re NOT the boss of US!

“Next Year…”

Published on February 28, 2013February 28, 2013 by beatingcowdens4 Comments

We left the house today with only the normal jitters. We even had time for a few family photos.

I have been teaching for 16 years.

I have addressed hundreds of students, if not thousands through the years.

I pride myself on being able to get their attention with minimal effort, and keeping it in most cases.

Sometimes it can be a bit more trying – like a full auditorium, as opposed to a closed classroom, but with the right presence and message, it can be done.

I did not get to hear Meghan’s speech today first hand. I was thrilled to see her happy smile when I picked her up. I knew she felt it had gone well, and that was most of the battle won.

While she was doing her homework I watched the recording her para had kindly made for me. I was awestruck.

Not only was I impressed with my little girl, and the clam, confident way she spoke, I was AMAZED by the quiet in the auditorium.

Now I know they are taught good manners, but this went beyond that. She HAD them. They cared about what she was saying. They were interested to learn about Cowden’s Syndrome. They were hanging on her words. The applause at the end confirmed it. She nailed it. Public speaking is not an issue for my girl.

The day followed with a Skype call to her friend Connor in Colorado. They struggled with the video feed, but they had audio and will try again next week for the video.

I know its only the US, but “Rare Disorders without Borders” here we come!

HUGE smile. Giant fatigue. Her day was a success. And now, tomorrow, she will give her speech all over again to the 4th and 5th graders – her peers. May it run just as smoothly!

Meanwhile, back at my school – the ribbons were distributed. The jeans were on. The kids were charged.

Many of them even decorated their doors with the Global Genes Project – denim ribbons. This was a huge school spirit event. I received cards, letters, and even a pack of thank you notes from one class. It was beyond touching to see my colleagues, supervisor, and students, all in their jeans with their denim ribbons.

“Hope it’s in our Genes”

We clearly are not alone.

All day long the photos came in. My Facebook page was hopping.

My nephew’s PreK staff on Long Island, my friend’s Catholic School on Staten Island, a few ribbons to a local HS, junior class at another school wearing theirs to support a family member. My sister had hers at work, and so did some dear friends.

“Next year…”

Next year can we do a fund raiser too?

Next year can we involve more schools? Maybe all of Staten Island?

Next year…

I got tons of requests, and offers of help. We know LOTS of really great people.

Next year, maybe we will help raise awareness even more.