Pathology…

Published on July 26, 2016 by beatingcowdens2 Comments

About an hour ago I got off the phone with Meghan’s gynecologist. It seems we dodged another bullet.

Mostly.

Once again we got to spend about 45 seconds in a deep breath as we were told there was no evidence of malignancy in the uterine biopsy from last Friday.

BUT…

There is always a “BUT…” I’ve come to expect it now. After she spoke, she paused.

I asked her why she sounded happy and hesitant at the same time.

“Well I just got off the phone with the pathologist…” and her voice trailed off.

So much was what she expected when she spoke to us Friday. But, it was still bothering her that there are polyps. And more than one.

“It just shouldn’t be…”

Sigh.

We’ve heard this so many times before. “It just shouldn’t be…” But, in fact it is.

So the polyps were benign. The tissue sampling was benign. This is a good thing. A very good thing.

But, this whole situation. The whole scenario that causes all sorts of conversations a 12 or 13, or even a 19 or 20 year old for that matter, should NEVER have to have, is just not ok.

There are thoughts, decisions, trade-offs, conversations, risks and benefits that make deciding on a high school seem trivial. Strange that THAT will be the toughest thing most girls her age have to do this year.

And as I look at her, it kills me inside the things she has to go through, and the thoughts she needs to think. All I can do is thank GOD, that He trusted me with this beautiful, dynamic, witty, young lady. And I promise to take good care of her until the rest of the world figures her out.

(and really, for FOREVER. as we remain #BEATINGCOWDENS together!)

Counting… Our 400th Post!

Published on July 21, 2016 by beatingcowdens1 Comment

“Count your many blessings, name them one by one…” Grandma used to sing years ago when we would complain about nonsense. She was a little tough sometimes my Grandma, and maybe that’s where I got it from. But, many times she was right, whether we listened or not. (Maybe that’s where I got that from too? ;-))

I like numbers. They are logical. They are what they are. In a world that often makes no sense at all, I find order in numbers.

Except sometimes I’m faced with the question of what to do when numbers become overwhelming in and of themselves.

This marks the 400th post on this blog. While it’s by no means a masterpiece, when I sometimes poke through old posts I remember so much of where we’ve been. It’s a definite roadmap of our journey, and Meghan and I take great pleasure when people from around the world reach out to us and cite the blog as a source of comfort and strength.

Cowden’s Syndrome is rare enough that it can be a lonely diagnosis. Being able to reach people the world over has been a victory for us, and them.

With over 170,000 hits on various posts I know we are getting the word out. Slowly.

I might have wanted to celebrate this post. I might have wanted to make it really special. But, I’m counting something else today.

Today was the 17th time I’ve gotten off the phone with the nurse, giving me pre-operative directions for my daughter. Today, I listened as I always do, reciting the directions in my mind before she spoke. Really my only interest was the time. The rest is routine. I want to stop counting. I want to just go with it. I can’t give you an exact count on mine anymore – because once you’re a mom, well, you just focus more on what’s important. And you become less important. And that is a gift, denied to many, cherished and appreciated.

Somehow though, if I stop counting for her, it makes her struggle feel less valid. The numbers give her strength. A badge of courage. Something concrete in this world of abstract.

My post last night was about “Patience”

https://beatingcowdens.com/2016/07/20/the-waiting-place-2/

And as I poked around the blog this morning I was taken back years, through so many similar posts.

https://beatingcowdens.com/2013/01/10/blessings-and-patience/

https://beatingcowdens.com/2012/07/02/the-waiting-place/

https://beatingcowdens.com/2015/05/06/hurry-up-and-waiting-rooms/

https://beatingcowdens.com/2015/08/28/losing-count/

Their similarities are uncanny. I guess the story doesn’t change much. Hurry up, wait, surgery, wait, recovery, wait, follow up, wait…

So I’ll leave this 400th post as unremarkable. Nothing has changed. Nothing will change. And that’s the precise reason we keep counting, and keep telling our story.

Tomorrow, surgery number 17. 9:15 arrival. As usual, prayers always appreciated.

#beatingcowdens 400th post!

The Waiting Place…

Published on July 20, 2016July 20, 2016 by beatingcowdens2 Comments

A quick Google search brings the definition below when the word “patience” is entered.

pa·tience

ˈpāSHəns/

noun

1. the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.

I’ve been thinking a lot about patience these last few weeks. It’s something we work on from a very young age, yet I’m not quite sure it can ever be attained in its purest form. At least not by me. Not if I’m honest.

And I tend to be honest right here. Which some might think is an odd place to make that choice, but that’s for another conversation.

We work on patience when we are young. Waiting for play time. Waiting for school to end. Waiting for a party. Waiting to get there. Waiting for the game to finish. (Waiting at ‘the waiting place’ like Dr. Seuss in “Oh, the Places You’ll Go”)

We learn that patience will help us get things faster. If we are patient our parents are more likely to bend. If we do what we’re told and wait, things are more likely to go our way. That ice cream cone has a better chance of landing in our hand if we’ve exercised patience than if we’ve badgered.

When we get a little older there are less overt rewards for patience, yet it’s still a necessary virtue to master. Those without patience are deemed immature. If we are overly demanding it endears us to no one.

I know this. I know all of this. And generally I am a pretty patient person. But, I must tell you I have thought long and hard about the amount of patience required to navigate Cowden’s Syndrome and its ramifications, and it seems to be an inordinate amount.

I get it. I’ll say it a thousand times to anyone who will listen. Of all the “rare disease” cards to draw, this is by far among the better ones. I know of the suffering of so many who are diagnosed with torturous terminal diseases. I know of so many who would trade places with us in an instant.

If the PTEN mutation causing Cowden Syndrome is found early, a lifetime of vigilance can often ensure longevity.

It’s just that with that vigilance, you need to much darn patience. So with my gratitude, I sometimes battle frustration. Which is ok. Because I am human.

In the last 21 days I’ve been to Manhattan 4 times for doctor’s appointments, and another 2 to Long Island. The average roundtrip for these appointments is about 5 hours. 5 hours to travel in insane traffic regardless of the hour. To Manhattan the distance is only 13 miles and I can not tell you how many times 2 hours hasn’t been enough time to be on time.

But, I should never worry, because they are rarely, if ever on time. And while I understand the myriad of reasons doctors run late, still the patience sometimes runs thin. Especially when we are anticipating another traffic filled journey home.

The patience wanes when I call offices and 2 days lapse without returned calls. I struggle when I have to spend hours explaining what test I need insurance authorization for, only to have the person speaking to me become hysterical with laughter, presumably because they are being told a joke. I’m not against laughter. I actually like it. But, when I have to now cancel the test ordered by the doctor I never wanted to see in the first place, sometimes I just can’t find it funny.

When I call for an appointment and I’m given a 3 month wait time. And an appointment smack in the middle of the work day. I lose patience. I don’t expect special treatment. And its a good thing I don’t. But its sometimes hard to stay patient when you’re juggling over a dozen specialists (each) and a full-time job, and academic honors.

So in the summer I try to be even more patient. But by default I have to get a lot of things done in the summer. We are actively trying to shove in some fun, in between a boatload of appointments. I try to squeeze in time in pockets of my day to regroup and relax. I try not to cringe when my Facebook news feed is full of play dates and day trips. Why shouldn’t it be? I don’t WANT anyone else to have to sort through this mess.

Friday is Meghan’s second uterine biopsy. PTEN mutations tend to cause most of their cancers, although not exclusively, in the thyroid, breast and uterus. The fact that she hasn’t hit her 13th birthday yet, and this will be her 17th round of operating room, general anesthesia procedures is taxing. But, we will be patient. We will be patient tomorrow when we wait for the time of Friday’s procedure. And we will be patient on Friday as there are often delays. We know.

We will be patient over the weekend as she adjusts to the discomfort and pain from the procedure.

We will be patient while we wait. And wait. For the critical pathology report.

We will be patient while she heals enough to return to the pool. Her happy place.

Patiently we will continue to navigate the road of vigilance, peppered with mines that need to be avoided at all costs.

We will pretend, each time we meet a new doctor, that they are the most important. We will not even try to explain the full complexity of the scheduling of life. They have their own problems. They don’t need to hear about ours.

When we each face our own lives we know the challenges presented to us. I don’t want any of yours. At least I understand the task at hand here.

I have gratitude that I am given the opportunity to allow my vigilance to matter. I am patient. Mostly.

pa·tience

ˈpāSHəns/

noun

1. the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.

Usually I take a deep breath. A bunch of times. I’ve learned patience gets you farther.

So if some days are harder than others, I ask you to have patience.

#beatingcowdens can be exhausting.

“We’re All in this Together…”

Published on July 16, 2016July 16, 2016 by beatingcowdensLeave a comment

High School Musical – We’re All In This Together

“…Everyone is special in their own way
We make each other strong
We’re not the same
We’re different in a good way
Together’s where we belong

We’re all in this together
Once we know
That we are
We’re all-stars
And we see that
We’re all in this together
And it shows
When we stand
Hand in hand
Make our dreams come true…”

The news is filled with horror stories. Local and abroad, young and old. Lives lost through senseless acts. Cries for unity, and division sometimes drown each other out. From the grand scale, to stories closer to home, we seem collectively to be lacking the notion that, for lack of a better phrase, “We’re all in this together…”

As Rare Disease patients, one of the statistics that blew Meghan and I away early in the game, was the one that said 1 in 10 Americans suffers from a Rare Disease. If all of these people got together, they would make the world’s THIRD most populated country.

30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population.
If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country.
Source https://globalgenes.org/rare-diseases-facts-statistics/

We have wondered through the years what good could come of uniting forces for the benefit of all Rare Disease Patients. And slowly we are starting to see charities connect for the betterment of the big picture. The PTEN foundation has teamed with a patient with Duchenne Muscular Dystrophy, to raise funds to benefit both causes, and for those that remain undiagnosed.

Please consider supporting this cause. There is important work being done for all.

(FROM THE PTEN FOUNDATION FACEBOOK PAGE) Exciting News!!! We have a team of 12 sponsored cyclists that will support Ride4Gabe getting the word out about ‪#‎Duchenne‬ Muscular Dystrophy,‪#‎PTEN‬, and all Rare Genetic Illnesses with unmet medical needs. This is huge. You can help, please share this and our team go fund me link often. 1/2 of all proceeds will go to our PTEN Foundation.

HTTPS://www.gofundme.com/wesupportride4gabe

THEY GET IT! They understand, “We’re all in this together…”

I was never a huge fan on Disney’s High School Musical. I’m not really sure I ever sat down to watch, and I likely judged without thinking. But I’ll be the first to tell you first impressions can be flawed. And I’ll also tell you that I ‘get it’ on a much more grand scale after last night.

For us it started with a friendship that bloomed between Meghan and one of the most compassionate young ladies I have ever met. They’ve known each other forever, but only in recent times have they come to know each other as “friend.” They spent time on stage together through middle school productions, and it was through this young lady we learned of a Summer Theater opportunity offered.

Meghan's "Sisters" not by birth, but through love, heart and choice. — Meghan’s “Sisters” not by birth, but through love, heart and choice.

We are a self-sustaining program sponsored by the Staten Island Mental Health Society whose mission is to promote positive mental health through the arts. We are currently celebrating our 52nd Season of bringing live theater to children and families.

Looking for a summer change of pace, and not knowing at all what to expect, I dropped Meghan off to the Snug Harbor dance theater where these forty-five or so 9-18 year olds would spend the next 8 days generating a full “junior” production. I walked into the back of the room for the parent meeting at the end of the first day, and I watched the children, and young adults, attentive on the floor. This was July. There were a lot of them. Their respect had already been earned by the staff. This was a “no-nonsense” set up. We received out parent information and as we left to head home, my girl said very little about the day. She told me she liked it though, and this was a big win.

Some of the children in the program were new, like she was. Others had been in the program for years. And somehow it seemed to not matter. Ages, genders, styles, personal interests, there seemed to be very few alienating factors. Everything seemed to be joining them together.

Each day pick up was a little smoother. Names were a little more familiar. Identities seemed a bit more well-established. By the time we came home last Friday, it was hard to imagine they had only spent a bit more than 24 hours together.

10-4 for eight days they sang, they learned, they laughed and they grew. They focused and learned that they needed to keep …

“Just keep ya head in the game
Just keep ya head in the game

And don’t be afraid
To shoot the outside “J”
Just keep ya head in the game…”

They became a team. They became a group of high energy youth, who each possess their own strengths. Instead of trying to outshine each other, they learned they would shine best together.

Last night before we got into the theater I looked around. I saw photos from the dress rehearsal, parents and children I knew from other walks of life, and family and friends there to support my girl. I am an over-thinker. I always will be. It was hard not to think one week from then she’d be, God-willing, on my couch recovering from another biopsy. But, that was not about tonight. Tonight was about #beatingcowdens by being part of a group, by being one of “them,” and by being on that stage in a very present way. So I cleared my head, and I watched.

Sneaking in a Proud Mommy Moment 🙂

I watched a play about finding your own identity, supporting each other, not being linked into your “label,” following your passions, learning trust, and forgiveness and so much more.

I never was a fan of “High School Musical,” until last night. Last night I realized that there was such a timely, deeper meaning.

Truly, “We’re all in this together…” and in the words of Ben Franklin, “We must all hang together, or most assuredly we will all hang separately…” It’s time.

It’s time we stop seeing labels, and who we think people are. It’s time we start learning who they really are. It’s time to start celebrating the good. Because there is much good to be celebrated.

On an island knee-deep in a very real drug crisis, hitting every single walk of life, I am filled with gratitude for SICTA, for giving children something to focus on, and for instilling a positive message of self-worth and deeper meaning. I can not name all the adults who touched my girl’s life this week for fear of leaving someone out, but YOU, YOU are leading by example. I am full of gratitude.

Life #beatingcowdens is riddled with twists and turns. You gave us a brief respite.

And, as the lovely young lady took Meghan from the steps of the theater and invited her to the diner “with the cast,” so many things came together.

“We’re All in This Together,” indeed. THANK YOU #SICTA

“1,2,3…BRAVA!”

“Stay Alert! Delays are Possible!”

Published on June 28, 2016June 29, 2016 by beatingcowdens1 Comment

I saw the sign Friday, somewhere along the Pennsylvania Turnpike. I laughed, in spite of myself.

We were headed on a 400 mile road trip to West Virginia, a trip I was making for the second time, and Meghan for the first. Last weekend in June to celebrate Alan’s birthday.

As we traveled through the hills of PA, I became somewhat accustomed to shrieks of joy, as the landscape at times was utterly breathtaking. And, there were cows. Overwhelming for a young city girl, not given too many opportunities to travel out of a small radius. The camera barely stopped.

I was thinking about the list of things creeping into the month of July already. There are 8 appointments and a surgery for Meg already scheduled. I am annoyed, not so much at the surgery, as I am about the time constantly taken to try to stay on top of this cancer -causing, tumor-provoking, life altering nightmare called Cowden’s Syndrome.

Meghan’s next major procedure is Friday July 22nd. The pathology on that procedure will determine what, if any, delays are possible in the future.

“Stay Alert! Delays are Possible!”

There wasn’t much traffic on the way to West Virginia. The trip itself took us a little over 7 hours. We arrived before 9, and blended right into easy conversation on the porch. Alan, his family, and some friends, welcomed us warmly. They greeted Meghan as if they had known her for years, and treated me as if I stopped by every few days. All of this oddly comforting. In reality I met them for the very first time last June, and Meghan was meeting them that night.

Yet, we had known each other for longer in ways that matter. These men, most of them, were Marines that had served with my Dad some 45 years ago in the jungles of Vietnam. These men knew my father during a brief time in his life that undoubtedly changed and shaped the man I later knew.

Alan was the first to reach back to me when I sent a letter to Dad’s 1st Amtrac Batallion, 3rd Marine Division brothers. I was, at the time researching an incident that we felt may have warranted a Purple Heart for Dad. I sent over 20 letters that week in January 2014. I heard reply from every living Marine I contacted. EVERY SINGLE ONE. They spoke to me, and comforted me. Those who remembered the incident wrote letters of support. All told me that as the daughter of a Marine I was one of theirs. I was to call on them as needed. It seemed surreal.

But Alan stayed in touch. Close touch. We spoke, and still speak via text several times a week, and often by phone at least once a week. As he worked every angle he could for a Purple Heart that not earned in the technicalities of the USMC, we grew in friendship. And over time I came to realize that the relationship we had built filled a larger hole than any posthumous medal could have.I do not mean ever to saint my father. Nor do I mean to make excuses for him. There were some terribly rocky times in my childhood that can not be repaired. But, we had time to make peace years before he died, and I started to understand a few things. A few really important things.

Now, we were in West Virginia, keeping time with 5 Marines who served with Dad. They were wounded; physically, emotionally, or both. They shared stories. They shared PTSD. They shared tales of failed relationships, and difficult feelings of guilt. They verbalized what Dad couldn’t.

And Meghan, oh did they take her in! One by one, as if helping my father make up for lost time, they spoke and laughed and listened. They got to know her. They cared.

Saturday morning Alan’s grandson took time out of his day to teach Meghan to shoot a compound bow. It was something she had always wanted to do, and circumstances had not allowed. So, here we were in the hills of West Virginia. And there was her lesson with the bow. Arrows on target. Success.

img_7428-1

A few hours later we were on a farm with the Marines. We rode a “side by side” through the farm and got to take in views we would not have otherwise seen. Then, Meghan was invited to shoot a rifle. With a little hesitation she was guided. And I watched as her tense face turned into a smile. There were 4 paper targets 100 yards away. She fired several times and hit paper repeatedly. First try, “Oddly relaxing,” and successful.

Maybe because we live in the zone of “Stay alert! Delays Possible!” that seizing the opportunities as they present themselves is even easier and more logical. I didn’t shoot a bow or a rifle, so I can’t be sure. But, she is clearly not shy about learning new things.

The birthday party ballooned to over 50 people in the driveway and garage of this beautiful home. There was mingling and talking, mostly with people I barely knew. Meghan found the time to chat with each of the Marines. She asked questions. She got answers. And, in some cases more questions. But they each took time to speak, honest, and frank, about their experiences, and about her Grandpa.

I stole away some time to lay on the front lawn and appreciate the flags while enjoying the relative quiet of a “busy” street.

Meghan was met with generosity of tangible items, and generosity of kind spirits. She now has a money clip and some Vietnamese money from the era. She also has some special paintings, and a walking stick. The latter two were gifts from “Uncle Moe,” who was a bit older than the rest. After 3 tours in Vietnam, and 22 years as a US Marine, he had some tales to tell.

When she asked what she should know about the Marine Corps., she was told “Brotherhood”. The simplicity and depth of that answer was playing out over the weekend, and it made sense in concept and in real-time. These “brothers” trained to never leave a man behind. And in our case, that included his children and grandchildren.
The weekend went too fast, and before it was time to leave we even sneaked in a visit with some pigs down the road. City girls have to make the most of things when they are around!

Preparing to leave on Sunday was harder than logic says it should have been. But, we had spent the last 2 days enveloped in a Marine Corps “sandwich” of unconditional love and support. We know now with these Marines there are no “goodbyes,” only “see you soon!”

As we drove I don’t think either of us spoke for at least 75 miles. The enormity of it all was tough to digest.

She held the walking stick in one hand and the money clip in the other, wanting to make the weekend longer than it had been.

I cry often. Meghan, not so much. Yet, both of us were choking a bit. It was the kind of experience that changes you. The simple beauty of just fitting in. Just because.

“Stay Alert! Delays Possible!”

Not just traffic delays, but real life ones too. As we began the 400 mile trek home we contemplated Monday’s appointment in Manhattan – a quick toss back into reality.

I pondered whether it was right to show Meghan this world, and then take it from her so fast. But, I knew it was. It was a part of her. A part of her history. A part of her life. It was something that I do not fully understand, and yet I needed to expose her too as well.

Dad was not a saint. But, he loved us. Deeply. There was never a doubt about that. Even as he began to heal, he often struggled to find ways to express it. It was a battle in progress, and he was winning. But, he was called home before he could quite finish.

So, he left it to his “brothers,” his Marines.

And they did a good job.

This weekend was for the soul.

There’s plenty of time for

#beatingcowdens

this week.

The Days are Long, but the Years are Short…

Published on June 20, 2016June 20, 2016 by beatingcowdensLeave a comment

A wise person once told me this. I think Meghan was young, and in that two-year span where most of her time was spent screaming. I admit to wanting those days to end when I was in the middle of them. And, while I miss some of the cuddling, truth be told, I’m not sorry I wished THOSE days away.

It’s the rest of them.

From the time she stopped screaming, she’s been pretty cool to be around. And now I look at her eye to eye. While she’ll always be my baby, the years seem to be flying by.

This week I had to explain to her middle school that she would NOT be taking 9th grade math in 8th grade. For some people this makes a lot of sense. For us, not so much. I’m all about the foundation of math, and building without the 8th floor seems silly to me. Plus, really, there is nothing wrong with taking 8th grade math in 8th grade. What’s all the rush?

When Meghan was born she had seven great-grandparents. Two of them she never met in Puerto Rico, but still seven great-grandparents. Insane.

She also had 5 grandparents. That’s a lot of love.

But, I also remember clearly a colleague at work commenting, “That’s a lot of loss she’ll have to endure.”

Three of the most important men in my life.

I was indignant. Annoyed when she said it, because even though my conscious mind knew it to be true, I was not one to sit around and think about it.

We had Cowden’s Syndrome to digest. We had major league health and emotional issues to manage, and I couldn’t allow fear to envelop us.

I surrounded her with the grandparents and great-grandparents as often as I could. And every year that ticked by was a blessing, because she built her own memories and relationships with each one.

The fathers and grandfathers... — The fathers and grandfathers…

Then, in June 4 years ago, in 2012, we lost GGPa, Grandpa Al – Ken’s Dad. He was so much a part of our lives and our family. Ken embraced us as his own when he married Mom, and his family was no different. And Meghan and GGPa… well, she was his “Sapphire,” and they could certainly light up each other’s eyes.

In the fall of 2013, Grandpa Tom got sick. He was never ever sick. But, this time it looked very wrong. And it was. In about 3 months time, he was gone. Snatched away at 65. He had made such an effort to be around Meghan. He was so deliberately making up for lost time and I loved him for it. They had their own set of memories…

A few months later, in October of 2014 Great Grandma Gen headed up to meet the angels she missed for so many years…

And then in March of this year our beloved “Pop” was gone. Pop was larger than life. And even at 96, seemed almost invincible. Until he wasn’t. The ache is deep, and raw.

Five years ago I bought so many Father’s Day cards, people would laugh at me. Five years ago I remember telling Meghan how thankful I was to need to buy that many cards. Five years ago, I couldn’t have predicted…

So much has gone on in our lives on a medical front. If I count loosely I would say it’s been about 10 surgeries between us since that Cowden’s diagnosis in 2011. So often we feel like we are bouncing from one hospital or appointment to another. So often we are scheduling appointments instead of relaxation, surgeries instead of vacations.

But, we make a point to stop. To try. To focus. Yesterday was a tough day. The pain was a bit overwhelming at times. But, the gratitude runs deep, for the family we have. For Felix, the best husband and father we could have ever asked for.

Felix took some of Pop's tools from his car, and brought them back to their glory. Those two had their own special bond. — Felix took some of Pop’s tools from his car, and brought them back to their glory. Those two had their own special bond.

Tonight there was wonder in Meghan’s eyes. She saw the first fireflies of summer after swim practice. They went out to get a closer look.

And I peeked out onto the back deck to catch a glimpse of my 5’8″ daughter on her father’s shoulders – to get a better picture of the sunset.

FullSizeRender (7) — A better view on Daddy’s shoulders – no matter how tall! 🙂

I smiled, in spite of myself. Tonight it’s not about the weeks ahead. Tonight it’s not about the next surgeries and appointments. Tonight, it’s about tonight. It’s about going to bed a little later so as not to miss the little things.

Tonight is about making memories. The little ones. The ones that matter. The ones you carry in your heart forever.

The Days are Long, but the Years are Short…

And we remain forever

#beatingcowdens

In a Dark Room…

Published on May 30, 2016 by beatingcowdens1 Comment

I’m thankful that some nights she still invites me to chat with her in her dark room

Late

After she should be asleep

I’m thankful that we can relate to each other

Different – incredibly different

Yet so much the same

Yesterday I hurt a lot

An unusually extra tough day for me

But I looked at her and I kept on plugging

She knows no other way and leaves no other option

I hate that she bears this burden

There are days it could destroy me

But it doesn’t

She simply motivates me to keep going

She pushes me to be a better person

A better mother

A better human

Often without saying a word

Sometimes in her dark room we’ll share

What we worry and wonder about

Sometimes we tell things we’d never tell another

Sometimes we laugh

Sometimes we cry

Mostly we learn things

Still after all this time we learn things

Like yesterday when I told her that I am luckier because I have her to keep me going

And she looked at me quizzically and wondered aloud

Why do you think I keep going?

And in that moment there was even more clarity

Daughters and Mothers

Mothers and Daughters

We worry and wonder

We argue and spat

We chat and share

We battle

Not each other

But this disease

Together

Different but the same

Pain, surgery, worry, wonder, loneliness, anticipation, anxiety, and sometimes terror

I hate every moment of this road she has to travel

But I am selfishly grateful for the quiet, determined way

She keeps me balanced and focused on what matters

So we can help each other

And remain

#Beatingcowdens

FOREVER

Aunt Em, Arista, Albany, and (Almost) an Ambulance

Published on May 15, 2016May 17, 2016 by beatingcowdensLeave a comment

THAT would be the alliteration to sum up the week that was, Thursday May 5th – Thursday May 12th.

Sometimes I get annoyed at myself that this blog gets neglected. Then I realize it’s because sometimes I have to LIVE the life, before I can write about it.

It was a rocky month leading into the much anticipated school play. Her health was questionable. She spent most of Spring Break recovering from some random illness. Attendance at swim has been spotty, a true sign she’s not herself, but after attending the Swim Team’s annual banquet the night before, she was ready for “The Wizard of Oz Jr.”

FullSizeRender (4) — Meghan with the drama teacher that helped her find a piece of herself.

Meghan knew she liked the stage. She didn’t know until she met her drama teacher in 6th Grade, that she also enjoyed acting, and singing. Her father and I were stunned when we heard her for the first time. Thank goodness for teachers… she may never have found this outlet. And it has been such a wonderful thing. She has met some really great kids, and has had fun along the way.

She was so excited to play Aunt Em in this year’s play, and even more excited because “Dorothy” was being played by a trusted ally, a rare commodity on Meghan’s life. It made the role easier to get into, and to play with her whole self.

FullSizeRender (5) — Meghan and her friend “Dorothy”

Four shows in two days tired them out, but the standing ovation to almost a packed house at the Intermediate School Friday night showed all their efforts to be worth it.

Meg slept almost all day Saturday. This is how it works. We play trade. For those of you familiar with the “Spoon Theory,” (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) we often borrow off the weekend “Spoons.” We don’t get out much, but it keeps things working. She woke some time around 2:30 PM Saturday when I roused her.

chronic-fatigue-spoon-theory

Sunday was Mother’s Day. We visited some special mothers, caught up on some homework, and finished a project. Monday was school as usual, followed by her second year induction into the National Honor Society, (Arista) followed by preparing for Tuesday’s trip to Albany.

Some time over the spring break I was contacted by the office of Senator Andrew Lanza. Apparently, every year, every Senator gets to select a “Woman of Distinction” to be honored at a special ceremony in the Capitol in Albany. We were amazed, and humbled that he had chosen Meghan. The youngest to ever receive the honor, he was attracted to her spunk, her determination, and her “can do” attitude. He liked that she didn’t wait to grow up to start doing something. He liked that she was 12 and making a difference now.

So on Tuesday morning, Felix, and Meghan and I set out on the 2.5 hour journey to Albany. The trip was smooth, until we got a tiny bit lost in Albany, but we were easily saved and set right by the Senator’s staff. Nancy had us in the right direction in no time.

_DSC6837 — Every “Woman” had a bio on the wall. We also got a beautiful book with all the bios inside!

We got to the Senator’s Office and enjoyed a wonderful lunch. We got to sit on the Senate floor, and watch some of the Senate in session. We walked around the building, and enjoyed the afternoon.

The ceremony began at 5:30 and probably my only regret was that I couldn’t record every moment to replay in my brain forever. It was one of our proudest hours as parents.

_DSC6877

https://www.nysenate.gov/initiatives/women-distinction

(If you click the blue link above, Meghan is on Page 44.)

The reception that followed allowed for some conversation with Senator Lanza. An incredibly intelligent, down-to-earth, “regular,” guy kept Meghan chatting for well over an hour. We took pictures, laughed, and she even secured an internship for the summer after her freshman year in High School.

_DSC6894 — Meghan and Senator Andrew Lanza

The drive home got us in the door around 11. We were asleep by 12 and ready for school and work the next morning. Tired, but determined, she even made swim practice.

Thursday I dropped her at school regular time.

By 8:20 my phone was ringing with the school nurse’s number. She was not well, and they were frightened. They wanted to call an ambulance. Knowing where that would lead I begged her to wait. I went into automatic, and with an incredibly understanding group of colleagues and administrators, I was at her school in under 10 minutes.

When I arrived the color had begun to return to her face. She was weak, but able to focus on me. I told them I could take care of it, and I signed her out while they wheeled her to my car. Once in the house I waited a good 3 hours. No sign of a problem.

Rice noodles and flat ginger ale did her in inside of 20 minutes. I can honestly say in her 12 years I’ve never ever seen her that sick. She was in so much pain, periods of time were missing from her memory. I was terrified. But, foolishly or not, I held out. She was hydrated. I wasn’t taking her to the hospital here. Not again. And I knew we were meeting a new GI in the city Friday. If she could just hold on…

And she did. Because for almost 24 hours I just didn’t feed her. She slept most of it anyway. But, I’ve decided hydration wins, and food can wait. It worked. By Friday night she was almost back to herself.

Yesterday she swam in a CYO meet.

My head spins. And the tales I tell here are simply HER end of the week. Add in the routine, and the mundane, and… it’s been a long week.

I have work to do. Lots of it. It’s in a big pile right here next to me. There were plenty of things that “should” have been done that weren’t. And you know what? We’re OK. The house is in one piece. The Board of Health isn’t coming to inspect my extra dog hairs on the floor. The laundry isn’t folded. But it will get done.

Tonight I put me first for an hour, and putting me first is getting the week out of my system right here. Just me, my thoughts, and a glass of wine.

Cowden’s Syndrome – you’ve got some good fight in you, but we are stronger. We will take you every time.

We are #BEATINGCOWDENS!

_DSC6846

A Letter to Me as a “Mommy-to-Be”

Published on May 8, 2016May 8, 2016 by beatingcowdensLeave a comment

Dear 30 Year Old Me on Mother’s Day,

Listen up. Yes, you – acting as the general contractor; living through and participating in your house overhaul, while carefully moving your pregnant belly out-of-the-way. Do me a favor and sit down a minute. You don’t sit much, but you focus better when you do.

Life is hectic, I know. You’re working full-time, working on the house full-time, and trying to wrap your head around this Mom thing. You have a lot to do. I get it. There are papers to process, contractors to fight with, lessons to plan, furniture to order, walls to paint, and tests to grade. There is this small, ok, large human growing inside you. There is so much to think about, but there isn’t time to stop.

Do me a favor, and make time? I mean it. Force it in. Make time for you and your husband to just be. Make time to laugh. Make time to rest. Make time to get in the car and drive the not so far distance to see the handful of friends that have always had your back. Because, believe it or not, your new life will make this chaos look like a day in the spa.

Those friends, they are high quality. And you will always have each other’s backs. But, they will have husbands, and children and houses, and obligations of their own. Before you know it you’ll be keeping in touch with each other’s lives via Facebook and blog posts. (Yes, you’ll have a blog, but I’ll explain that later.) You’ll regret not seeing them more. Not sneaking in a few more dinners out, or some drinks and dessert. The time for that will come again, but it’ll be much later. And sometimes you’ll get lonely. Really lonely.

While you’re still sitting down, reign in some of those day dreams about the smooth way everything is going to go once the baby joins you. Broaden your definition of healthy into a “spectrum.” Refocus yourself onto the important jobs of motherhood; guardian, advocate, supporter, guide, confidant, conscience, role-model, nurse, doctor, therapist, just to name a few. Don’t bother looking at Pinterest. Your life doesn’t work there. Actually, MOST lives don’t work there.

That baby inside of you isn’t going to stay there forever. One day it’s going to make its way into the world in grand fashion. And she, (yep, you’re wrong, it’s a girl) will change your life in ways you could never imagine. By the way, if you can get through to that doctor before the induction, try to save yourself the bags of Pitocin and the HOURS of labor. She’s got a big head just like you. The C-Section is inevitable.

And, she’ll be the biggest baby in the NICU. Right from the start you’ll hear about her feistiness. The nurses don’t lie. Right from the start you’ll have to change your perceptions of how this mothering thing was going to go. From the very first hours you’ll have to learn to go with the flow because you’re about to set down a path you could not have imagined.

For about 18 months you will sleep rarely. She will cry and scream and yell in ways that your family will forget, but you will remember for life. You will learn how to function on raw nerve. You will use the baby pouch you got skillfully to sneak in an hour or two of sleep without dropping her. Because you know she’s not “spoiled” even though she only rests on top of you. You know it’s more. You know it’s her belly and you will hang on when others want easy answers and excuses. You will fight for her because you are her mom. And THAT is what mothers do.

By the time she’s one there will have already been a week-long hospital stay and a surgery that left the doctors “perplexed.” This is only the beginning. Dig in hard and sharpen your instincts. Trust yourself. Ask tons of questions. Learn early that doctors, and therapists are a dime a dozen. Settle for nothing less than the best.

Because those therapists, those Early Intervention therapists, and the Physical Therapist you’ll pretty much use for life, will have some of the greatest influence on your parenting, and on the health and growth of your girl. They will change your world. Listen carefully and learn.

This girl is going to get stuck like a pin cushion and shuffled from specialist to specialist. She’s going to confuse them, and amaze them. She will start to retreat into herself. All of a sudden she’ll be two, and not making a word. Hang on and don’t let her go. She’s not autistic, and never was, but she is medically complicated and she is not well. You will try as hard as you can. You will read, you will frantically research. You will seek out expensive alternative specialists. You will even record her agony for your husband so you can press on for her care as a united force.

You will fire pediatricians, doctors and specialists alike. You will slowly find your confidence. You will become a master record keeper. You will try things that are “different” just to see what happens. You will step over your toddler for two weeks as she tantrums on the floor when you take away her milk. You’ll worry that she’ll never eat again. You’ll get angry when you realize that the food she’s eating is making her more unwell. You’ll learn about the immune system and the GI tract. And by the time she’s two and a half you’ll get a whole lot of babbling. By the time she’s three and a half the speech therapist will cut her loose. Her belly will be flat. She will be much calmer, and she’ll be in a regular preschool with some “transitional and sensory issues.”

Her baby sitters will be tortured by your need to have every detail written down. Because, like a detective you will spend nights poring over things to make connections. You will have volumes of daily diaries, and binders of lab results. You’ll never leave and office without uttering the words, “Can I have a copy of that?”

She’ll grow physically and intellectually. You’ll cherish every moment extra, because you’ll know from where she came. She’ll have surgery after surgery, and a few more hospital stays. There will be scans and specialists to check that knee pain, the joint pain, and every other bit of chronic pain that will plague her young body. It will hurt you to watch, but you will be strong for her. You will not give up. You will not give in. You will press on.

And then in third grade there will be that genetic diagnosis that will turn life on its ear again. “Cowden’s Syndrome,” a “PTEN Mutation.” And you will start to study genetics.

But while you are studying you’ll learn about the health risks and you’ll focus on solutions. You’ll try desperately to wrap your head around the realities of this tumor provoking condition. You’ll hear the word “cancer” more times in reference to your girl then you’ll care to count. Then, you’ll get that positive test result too. That day when guilt takes over for a while. That day when you realize she doesn’t just have your hair and your smile. She also had this syndrome because YOU have it too. Don’t hang out in the pity party for too long. It’s not good for either of you. Trust in the grand plan.

Oh, and those relatives you love so much, the parents and grandparents, they won’t be around forever. I know that’s hard for you to imagine, because there are so many, and they are ALWAYS there. But, one day it will end. Do me a favor and take a few extra minutes and cherish each of them. Even if you’re really tired. Swing by. Say hi. Pick up the phone. You’ll be glad you did. I promise.

Days will blend into weeks, and weeks into months, and months into years. You’ll blink and wonder, but there will be no time to catch your breath.

Because it won’t be long before you’re in surgery for a double mastectomy. Yep. With lifetime breast cancer risks in the high 80%s, and your own history of 7 biopsies, this PTEN diagnosis took the decision from your hands. Don’t stress over it for too long. You’ve got good instincts. The double mastectomy with immediate reconstruction will be one of your best decisions ever. Get home to the angel that saved your life. The pathology report will confirm cancer was lurking in the breast proclaimed clean by MRI a month prior. You don’t need perfect breasts. You need vigilance. This beast will nip at your heels through a complete hysterectomy weeks later. It will swipe at you. Take care of yourself. Recover quickly and completely. Lose some weight. Fill your body with excellent nutrition. This is going to be a battle and you’ll need all your strength.

One day you’ll count and realize there will have been 16 surgeries for your girl. There will have been 16 times when she was walked into an operating room, and put to sleep. 16 times when you’ve prayed harder than you’ve ever prayed in your life, and 16 times when you know the pure joy of gratitude when you see her awake for the first time when it’s through. And you’ll know in your heart 16 is only the beginning. But don’t get caught up in that. TRY to stop putting it all together. TRY to just breathe, and enjoy the moments as they come.

One day you’ll look at your baby, all strong and determined. She’ll be taller than you and you’ll wonder how it went so fast. She’ll be mature, and so smart. She’ll be talented and compassionate. She’ll still be feisty and competitive too. She’ll be as athletic as her body will allow. She’ll swim and sing and be active in fundraising and outreach work too. She’ll be passionate about raising awareness for Cowden’s Syndrome and other rare diseases. She’ll encourage you to tell the story of the struggles you two face. Even though she’ll have a deep understanding that everyone has something, the rarity of this syndrome will cause her to implore you to get a real-time record out in the world. You’ll blog diligently, as often as you can, making sure to have her edit most of your work.

She’ll struggle sometimes, and so will you. Sometimes you’ll even argue. But, it’ll be the most amazing relationship you can imagine. You two will spend more time together than most other mother-daughter duos. Most of your time won’t be on “fun” adventures, but you’ll have hours and hours to talk and get to know each other. You’ll realize she’s spectacular.

If I had to pick the most important advice, it would be to tell her she is enough. Be sure she lives and breathes the reality she is loved. Deeply, and sincerely. Make sure she knows deep in her heart that she is enough, and all she ever has to be is who she is. Middle school is tough work, and she’ll need to believe this in her heart from the very beginning in order to remain true to herself during those years.

It’ll be a busy 13 years. But, every single moment will be so worth it. Trust yourself. Love each other.

Mother’s Day is really every day that you are hugged, loved, and respected. If you put the time in, it will pay dividends later.

I’m not sure what the rest of the journey has in store for us, but I’m sure we’ll be just fine. We’ve got a pretty awesome kid, and we are #beatingcowdens together.

With love,

Your 42 Year Old Self

“Hey, I follow you on Facebook…”

Published on April 29, 2016 by beatingcowdens1 Comment

There we were in the back of DSW looking for a pair (or two for accuracy sake) to fit the feet of my girl for “Aunt Em” in her school’s performance of “The Wizard of Oz” next week, and a woman approached us. She was happy, and friendly, and it seemed excited to see us. Meghan and I had never seen her before in our lives. But, she seemed to know an awful lot about us.

“Hey, I follow you on Facebook!. I am amazed by your story. And you guys stay so positive all the time. Such an inspiration!”

I’m not sure either of us knew quite what to do, so we smiled politely and said our thank yous.

Then we looked at each other.

Did someone just recognize us? Like we matter? A complete stranger? Wild.

There are times I write, or we write, and I feel it is simply a therapeutic output into cyberspace. Yet, we receive messages, some from all over the world, confirming our story is getting out there. We know all about digital footprints. But Wednesday, well we finally saw our own – face to face. In the shoe store.

Why do we tell our story? Why do we keep at it through the mundane and the heart-stopping? Meghan says, because the truth needs to be there. When someone looks, they need to find real people like us, getting by, every day.

I guess she’s right. She often is, although I don’t make a practice of TELLING her that…

Spring Break 2016

It sounds almost funny to say it. But, we are ALMOST used to it. See, there ARE no breaks. There just aren’t.

Doctors appointments take time. On average 4 hours roundtrip to Manhattan considering wait time and traffic. I have work. Meghan has school. We miss more than we should of each. Routine appointments are for days off. That’s how it has to be. But, then you add in a flu-like virus from who knows where, and you insert about 3 extra visits to the pediatrician, on top of a cardiologist, just to be safe, well by the time you get to the routine sono of the thyroid bed (where the gland was removed to check for regrowth,) and the dermatologist, and the endocrinologist, and the traffic, and the very fair school project… There is just about enough time to switch a closet or two, wash a few windows, and about HALF the curtains you intended to, while sneaking in one LONG trip to the grocery store.

We spent the early part of the break watching a few movies on Amazon Prime. This is a real treat for Meghan because I am ROTTEN at sitting still.

And somewhere in between “Ferris Beuller” and “Annie” we grabbed a few lessons.

From “It’s a Hard Knock Life…”

“Don’t if feel like the wind is always howling?
Don’t it seem like there’s never any light?
Once a day, don’t you wanna throw the towel in?
It’s easier than puttin’ up a fight..”

Sometimes when I come into the house I love, instead of feeling calm and relaxed, my heart starts to race. I think of the papers, and the phone calls, and the bills, and the scheduling, and the terror of missing something, and the compulsion to keep up with the basics, and I just want to sit on the floor and cry. Sometimes I even do. Sometimes I even get grumpy for a while. Then, usually when no one is watching I’ll grab a dog and rub a belly, or do something silly to try to shake off the enormity of it all.

I remind myself it’s about every little piece. It’s about one day at a time. It’s about counting the days with no headache instead of always the days with knee and hip pain. It’s about looking at the pile, neatening it up. Making a list, and leaving it there to go for a walk. Some days I get it better than others, but I’m a work in progress.

Yesterday, we did well with the pediatrician. He drew some more labs, but feels she’ll be well enough for full activity Monday. The dermatologist, routine Cowden’s Screen, was without incident too.

Today, the new endocrinologist (only our second visit) proved himself to be a wonderful addition to the team I am so desperately trying to form for Meghan. I DREAM of the day I get them all together, assign a captain and let THEM help me. But, for now, he is bright, inquisitive, and willing to toss out the “rules” when he treats Meghan. So the hormone that we had to ditch, the medicine that was out to save the uterus that now has to save itself, well that medicine can mess with T3 Uptake, one of the thyroid hormones. Meghan has a hard time converting T4 (Synthroid) into T3, so we actually supplement with T3. Most doctors have no idea. He said lets raise it and check her in 2 weeks. Works for me. Feeling like a validated human is priceless because this child is so exhausted all the time, it’s just not ok.

He scanned that thyroid sonogram report, reassured us about a renegade “reactive node,” and moved it to the “watch list.”

The next few weeks are set to be a whirlwind. I can only pray her body is up for the task. Lots of good, and happy things on the agenda.

It’s a busy life. I wanted to see some people this week. I wanted to reconnect with at least one friend. I know they are out there. And yet again, the week didn’t allow me any advance planning. Can’t expect people to wait around for me. So my music and my computer keep me company, with the laundry and the dishwasher, while Felix and Meghan celebrate at a Sweet 16. It’s good for them to get out together sometimes too.