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

DO SOMETHING!

Published on April 13, 2016April 13, 2016 by beatingcowdens1 Comment

The story of how a New York City girl got the ear of a West Virginia Congressman is a long windy one that involves the depth of love and dedication the United States Marines hold for their own. That loyalty and brotherhood extends through generations in ways that would be difficult to explain in words.

That, will be the story for another day.

For today, what you need to know is one of those Marines, who I hold very dear, heard me when I spoke. He listened when I told him how my father apologized upon learning Meghan and I had been diagnosed with the PTEN mutation that causes Cowden’s Syndrome.

Once Dad understood the PTEN mutation, he became very sure that he “brought this back from Vietnam.” Dad was certain that his exposure to Agent Orange in the jungles of Vietnam had changed his body. He was also sure that the toxin was responsible for what my genetecist deemed a germline (inherited) mutation in Meghan and I.

We know for sure that Meghan got her mutation from me. What we don’t know with certainty is where mine came from. My mother and younger (half) sister on my mother’s side tested negative for PTEN. My father was never tested. Before I could ask, he passed away from Pancreatic Cancer in December 2013. However, we do know my mutation was not “de novo,” or spontaneous. We know it was germline, “most likely passed through the sperm of your father,” my genetecist explained.

So, all we had to go on were Dad’s instincts, which I knew were in no way going to ever prove causative to the US Government.

But I reached out, and I acquired anecdotal evidence from my online support groups where 4 people other than myself indicated a first degree relative with a similar toxic exposure. In a disorder as rare as Cowden’s Syndrome (1 in 200,000) with group sizes in the low 100s in most cases, these were numbers worth noticing.

Sometimes a theory is all you need. And when you eliminate the need to “prove” and you focus on the need to “educate” and “raise awareness,” sometimes you can make progress.

Today, the story is about how Congressman David McKinley (West Virginia) and his staff listened when we spoke about Cowden’s Syndrome. And they did something.

I was put into contact with Lou Hrkman, the Executive Assistant to Congressman David B. McKinley, P.E. (WV-01). (412 Cannon Building Washington, DC 20515 (202) 225-4172) through that Marine I mentioned earlier. Alan doesn’t give up.

I shared an explanation with Mr. Hrkman, of Cowden’s Syndrome, and more specifically PTEN Mutations. I told him about the impact on our lives. I told him about my father’s instincts. I talked to him about how, with a syndrome like this, KNOWING SAVES LIVES. We spoke about veterans and toxic exposure. We spoke about the thought that exposure could alter genetics. We talked about RARE DISEASES, and more specifically, RARE GENETIC DISEASES. We spoke about how if the doctors at the VA were trained to look for these disorders, or to be more aware, or to educate veterans, or to look for these disorders in descendents of veterans, that it is likely LIVES WILL BE SAVED.

This week I was contacted by Mr. Hrkman, on behalf of Congressman McKinley, to draw my attention to the last paragraph on page 47 of the…

It says…

And there it was. In print. For the VA Hospital System to be held accountable for education.

It is not passed yet. The specifics of the bill need to be debated in Congress, but he is confident.

We who are so anxious to be heard, to be noticed, to be recognized, this is a huge first step. And while I realize many of you are not relatives of Veterans, I feel it is SO important that we take this opportunity to raise awareness NOW!

I asked Mr. Hrkman what people can do.

Here was his reply…

It sounds quaint, but writing or meeting with your congressman is the best thing you can do. Members take notice when their constituents are interested, especially on a personal basis versus a mass mailing or robo call thing. If you write your member, specifically reference the document I sent you (Military Construction, Veteran’s Affairs, and Related Agencies Appropriations Bill, 2017) and the page number. (Page 47) I would also contact Vietnam Veterans and other Vet groups, but Vietnam Vets are especially affected.

PLEASE, right now, my American Friends, contact your representative in Congress. Let’s make them HEAR US. ALL OF US. This could be the start…

PLEASE, share this post far and wide. Tag anyone who you think might help.

It’s time for us to DO SOMETHING…

“Do Something” by Matthew West

I woke up this morning
Saw a world full of trouble now
Thought, how’d we ever get so far down
How’s it ever gonna turn around
So I turned my eyes to Heaven
I thought, “God, why don’t You do something?”
Well, I just couldn’t bear the thought of
People living in poverty
Children sold into slavery
The thought disgusted me
So, I shook my fist at Heaven
Said, “God, why don’t You do something?”
He said, “I did, I created you”If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something

I’m so tired of talking
About how we are God’s hands and feet
But it’s easier to say than to be
Live like angels of apathy who tell ourselves
It’s alright, “somebody else will do something”
Well, I don’t know about you
But I’m sick and tired of life with no desire
I don’t want a flame, I want a fire
I wanna be the one who stands up and says,
“I’m gonna do something”

If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something

We are the salt of the earth
We are a city on a hill (shine shine, shine shine)
But we’re never gonna change the world
By standing still
No we won’t stand still
No we won’t stand still
No we won’t stand still

Onward…

Published on March 20, 2016 by beatingcowdensLeave a comment

“Onward Christian Soldiers, marching as to war, with the cross of Jesus going on before…” That was one of Pop’s favorite hymns growing up in our Lutheran Church. He sang it loud. He lived it softly, but meaningfully…

It’s been a long time since I have written and I am sorry.

Writing is my therapy. It’s free and easy. When there is a few minutes to do it.

And that, well that has been the problem these last few weeks.

I know it’s hard to imagine life getting so crazy that I wouldn’t have an hour or two a week to get my thoughts together, but it’s true.

Time to catch you all up –

On Sunday, February 21, 2016 the Second Annual “Genes for Rare Genes” fundraiser took place at the Hilton Garden Inn on Staten Island. We had www.yeehahbob.com Bob Jackson from Walt Disney World at the piano entertaining the masses. We had generously donated raffles galore. We had 178 friends and family with us, raising money and awareness for Rare Diseases. We had Meghan, hosting, and giving her speech and showing her video. https://beatingcowdens.com/2016/02/21/meghans-rare-disease-day-video-and-speech-2016/ We had Borough President Oddo stop by to continue to support Meghan in her desire to raise awareness and funds. We had Charlie Balloons entertaining the children and the adults too.

Bob Jackson - Our Disney Friend — **Bob Jackson – Our Disney Friend**

It was a perfect day, and a month later I can tell you the total funds raised were $13,045.40 to be exact! A large portion of that money has been sent to the PTEN Foundation and will have a significant impact on helping people like us with PTEN Mutations. The balance of the money is soon to be on it’s way to the Global Genes Project They will always be near and dear to Meghan. We identified first with the denim ribbon, and the logo “Hope, It’s in our Genes.” And that is the site we learned first about Rare Diseases, and that we in fact are among the lucky ones. These are lessons we will never forget.

Finally, I THINK, (and I apologize if we forgot anyone) all the thank you notes have been written or Emailed. When I finally settled down to do it, there were over 80. Meg helped, but I just flat out write faster. Now, we rest on that a bit, while we consider what changes and what remains the same for next year.

But, life did not even pause while we planned this event. My grandfather, my 96 year old grandfather, who was still living on the second floor of the two family home my mother grew up in, caring for my grandma, his bride of 70 years, fell on January 13th. This set of a tirade of events of the next few weeks that brought us all through an emotional roller coaster. My grandparents were the center of my world for much of my life, and even though I am blessed to have had them for 42 years, it is hard to imagine navigating life without them. Pop visited two hospitals, had mutliple strokes, and ultimately ended up in the nursing home for rehabilitation. The rehab was not meant to be, and on March 3rd he passed away peacefully, after some tumultuous days.

Pop - So much to so many — **Pop – So much to so many**

Grandma, now resides in that same nursing home. Alzheimer’s has robbed her of much of her memory, but she is well cared for by kind, patient people. She is safe. She is calmer. This is a good thing. And, in one of many ironies, perhaps her disease has been a blessing. There was no need for her to say goodbye to Pop, as he always seems to be just “across the room” when we visit. They were never meant to be apart any way.

Always together... — **Always together…**

We celebrated Pop’s life at a beautiful service on March 12th. My conscious mind, the rational one, is grateful he is at peace, and thrilled to know he is Home in Heaven. The little girl in me, the one who adores her grandfather is sad. Just very sad, and not looking forward to the series of “firsts” in front of us as reality sets in.

I planted the seedlings for my garden, just as my Pop showed me. I am tending to them on the kitchen table with plenty of sunlight. They have begun to sprout.

And those seedlings, and signs of new life remind me of why Pop loved the garden so. It is refreshing to see growth, new life, and new promise each day.

We celebrated Kathi’s bridal shower, as she and Jon will marry April 15th. All things new.

Time keeps passing.

In the interim there have been regular Mommy things to do, like swim practice, and doctor’s appointments, and household stuff. Thankfully in this house we have a very, very helpful Daddy, and we do a lot of team work. Thanks to him, all those weeks I was out of commission cherishing every moment with Pop, he was here, keeping it all going.

Last week we went dress shopping for some of the events coming quickly.

This week it was shoe shopping. Shopping for shoes is never as much fun, because it is hard to find a shoe that is 12 years old, and supports those feet, knees and legs. The right knee, the site of 6 surgeries targeting that AVM, has residual damage. The muscles are not formed as well, obvious only to Meghan when she puts on a pair of jeans. The foot is over one full size smaller than the other, and it is skinnier too. So, we buy two pairs of shoes to make one “pair.” We are careful. Frugal when we can be as it’s all x2, but focus is always on fit, style and comfort combined. No easy task. But, we did it.

Meghan left the store apologizing for the bill. I told her how grateful I am that we can pay for shoes, and other things. We had a long talk about the phrase, “I cried because I had no shoes, then I met a man who had no feet.” It fits nicely with the perspective talks we have all the time.

Tonight I was thrilled to find a website that will allow me to donate her “other” shoes to amputees. She was excited too. Something that will make us both feel better.

This week I scheduled some more appointments. I was waiting.

Friday we head to the gyn for the 3 month follow up. The hormones are a nightmare, but that’s for another post. The next biopsy is supposed to be in June…

The dermatologist 6 month will be during spring break. So will the orthopedist.

Cowden’s wasn’t gone. Heck, it wasn’t even resting. I was just using a big stick to hold it at bay for a few weeks. I’m sure I left some stuff out. It’ll come up if it was all that important. Just know-

We are still #BEATINGCOWDENS!

Onward…

“Super” Man

Published on March 6, 2016March 6, 2016 by beatingcowdensLeave a comment

**Pop brought a smile, love and humor to our lives.**

Superheroes are invincible. No matter what they always find a way to pull through. They make complicated tasks look easy. They make the world a better place just by being there.

Thursday night my family said goodbye to our Superhero. Pop passed away at the age of 96.

Now, before you get on about telling me how lucky I am. I know. Before you tell me he lived a good life, I know. Before you tell me, “at least he’s at peace.” I know that too. I recognize fully that I am 42 years old and I am saying goodbye to my GRANDFATHER. I get how epic it is that he got to know and love his great-grandchildren. I understand all of it. I am acutely aware of young, tragic stories that pepper this world. And, my heart breaks for each of them. But, please don’t think for a moment it will make enduring this loss even the tiniest bit easier.

For every moment of my 42 years there has been Pop. There has been the ability to call him, to chat with him, to follow him around, to hear his stories, to receive his hugs, his humor, and his love. There was Pop to read to me as a young child. There was Pop to teach me about the basics of a car, and oil changes when I went to college. There was Pop to dance with me at my wedding. There was Pop to take his 80-year-old body to my house every day and place my wood trim, piece by piece. There has always been Pop. And now there isn’t.

There was Pop and Grandma living upstairs during the years when Mom had to work a lot. There was Pop to drive me everywhere. There was Pop to record important events. There was Pop who NEVER said,”No,” and NEVER made you feel like you were bothering him. There was Pop who played in his garden, growing lima beans, string beans, cucumbers and tomatoes. There was Pop who built his own deck, and sided his own house. There was Pop who made everything look easy. There was Pop who made rocking horses for grandchildren and great-grandchildren. There was Pop who picked up Meghan from the school bus until about 4 years ago. I could sit here forever and the list would just extend. There has always been Pop. And now there isn’t.

I’ve been pretty silent on this blog for a few weeks. Not because Cowden’s up and left us alone. But, rather because there were other things that needed attention more. For a little while.

I got the call on January 13th that he was at the hospital. He had fallen. They were testing. He was discharged a few days later, although he was only home a few days. Before the rehab could start, he was taken to a different hospital. Strokes were occurring. There was an attempt at rehab there, and then a move to the telemetry floor, and finally a move to a local nursing home to try some rehab there. The strokes had taken away the thing he prided himself on, his mobility. The right leg wasn’t interested in coming around, despite efforts from several good therapists over many weeks.

Pop was many things to many people, but he was undeniably stubborn. That tenacity undoubtedly is what had carried him through the months preceding the series of strokes. He had Grandma, and he was set on taking care of his bride of 70 years, at all costs. He knew we were losing her to alzheimer’s. He was aware in so many ways. Yet, he was unrelenting in his forceful desire to care for her at home, “as long as God gives me breath.” He took only help from my Mom, and in the very short time preceding his hospitalization there was an aide for a few hours each day. But he, cooked, cleaned up, did laundry, shopped. And they lived on the SECOND floor of their home.

He modeled “in sickness and in health,” and “for better or for worse,” in ways that people do not even comprehend anymore. He took his vows and his promises so seriously. I learned what it meant to be married watching them through the years. They modeled love and respect, and he never ever walked away without kissing her goodbye.

That’s why he pushed so hard. Just as he had for all of us through the years, he was propelled by love of God and love of family. He drove his own car, albeit short distances. He handled the bills, the paperwork, and navigated Email and the internet. In the weeks before he passed we watched our 96-year-old Pop go from behaving like he was 70, to being 96. And it was not easy to watch over 25 years catch up with him in those weeks. It was not easy to watch the frustration, the desire to move, and the pounds slipping away as even eating became a challenge.

Grandma now resides in the nursing home Pop passed away in. And she is incredibly well cared for. I do think he would approve. But, her memories are leaving her. And maybe at this point, maybe that’s just better. Because to process the loss of Pop is incomprehensible to those of us who have a tight grasp on a lifetime of memories. Maybe that’s one of the blessings I can find here. Because I know when it’s time, they will be together. And I know the time they will spend apart will equate to a small fraction of the life they spent together.

When Pop first was hospitalized I was quite upset, and I apologized to a friend who had lost her mother at a young age. She spoke to me so kindly, I will never forget. “It’s hard for you because you’ve never lived life without him.” So gracious when she could have chosen to go in so many other directions.

Those are the words that give me comfort. Those are the words that tell me it’s ok to grieve. It’s ok to feel like I’ve got a 600 pound boulder on my chest, suffocating me. Those are the words that tell me that 42 years is a long time to have someone in your life and then lose them.

Pop was sharp. He was up on all of us, and all of our lives. He knew specifics, and questioned and followed along. Meghan always said she was in awe of how he defied his calendar age. She, like the rest of us, was enamored. And as he was at the second hospital having a scan, and he educated the lab technician on Cowden’s Syndrome, I had to laugh in spite of myself. He was always learning, and he wanted to make sure others were too.

I walked through their house yesterday, as I have done so many times before, but this time I stopped and looked at the Bible, held together by tape from constant use. I looked at the devotional set to January 12th, the day before he fell, and I smiled. He was, above all things, devoted to God.

The first great grandchildren - Luke and Meghan — **The first great-grandchildren – Luke and Meghan**

His memorial service will take place next Saturday, at the church I grew up in, at the church he helped build and maintain for so many years. I have some time to get my thoughts together before I speak that day. Pray that I may find a way to honor my grandfather, where words just don’t seem significant enough.

Right now we look for the promises of Spring, and new life. We look forward to my sister’s wedding. We press on, not because we are not broken, but because there is no choice.

Our hearts are torn, because there is never ever enough time. That’s what I tried to get at on my Facebook page.

“I am convinced there is never enough time with those who love us so deeply, and those we love beyond measure or words. We are so devastated at the loss of Pop, who was the anchor of our family through every storm, the wind to our sails, and the bridge under our feet. He was so much to all of us, and through our different relationships he somehow made us all feel like we were incredibly important. He lived through deeds, not words. His actions spoke volumes of his character, and were so telling of who he was. He lived his life in service to God and his country, while loving his family immensely. Rest easy and celebrate with the angels Pop. We will miss you every day. Until we meet again…”

Unsung Hero

Published on January 10, 2016 by beatingcowdens5 Comments

There is a hero in this war on Cowden’s Syndrome, this draining task of “beatingcowdens” that we undertake each day. He doesn’t get much attention, and he prefers it that way. Yet, I shudder to think where we would be in this war without our strongest soldier.

He never could have known almost 16 years ago what he was getting himself into. Yet, somehow every day I feel the strength and power of his love.

We stood in front of God, and our family and friends on that chilly April day in 2000, and he promised to love me, “for better or for worse, in sickness and in health…” And he surely has been true to his word.

I am not to sit here and say, “life is perfect,” or “we never disagree.” Because I would be lying, and frankly that would be boring.

But, we work together. We swallow pride when it’s necessary. We say I’m sorry. We forgive.

And, what I can say, is there is not a chance Meghan and I could spend our days “beatingcowdens” without him.

Most often he is not physically with us. He works later than I do. I pick up the afternoon appointments, local or in NYC. I drive to swim practice. I wait there and drive home. I am gone hours and hours every day.

We communicate via text a lot. I type a paragraph, he answers in a word or two.

Yet there is this sense of companionship we share from afar. While he can not be with us at all the appointments, or the practices, or the general running around the days take us on, he is home, with us in mind.

I can not tell you how often we walk into a house full of the smell of a freshly cooked meal. It’s not unusual for me to find a bed full of clean and folded laundry. The dogs are cared for. The candles burn all winter when the house is closed and stale. The floor is clean. Little is left out and around because he knows my compulsions and respects them enough to help me when I’m not home enough to help myself.

None of these tasks are trite. They are what provides me with the momentary glimpses of sanity I so desperately need.

He is patient when we talk about fundraising. When the whole month of January, and part of February will be consumed with “Jeans for Rare Genes 2” because Meghan wanted to DO something. He works, behind the scenes, ever-so-quietly to spread the word, raise awareness and get things started.

He backs up technology and sits through software updates.

He updates, paints, and fixes just about everything. And he really HATES painting.

He is a father above and beyond all things. He loves our girl so completely she still holds his heart in her hands. He is her way to unwind from her tightly wound Mom. He is her chef. He knows how to tease her until she laughs, and how to hold her most precious needs close to his heart.

And when the night rolls around, and the weight of the day presses heavy on my heart, he has the right balance of knowing when to hug me, and when to make me laugh. My worries transcend even Cowden’s Syndrome, and the list of prayers grows deeper every day for those we love who fight more than their share of battles. He knows just what I need. All the time.

Cowden’s Syndrome permeates every day of our lives. It’s reality. It is 5 surgeries for Meghan in a little over a year. It is 70 minutes on the ultrasound table for me this weekend, hoping, praying that I had the most thorough tech ever, and she didn’t actually FIND anything. It is next steps, and strategies, and switching doctors, and making decisions, tough decisions.

The saying goes that if we all tossed our problems into a pile, we’d take our own right back. I would… if and only if I could continue to run through life with my husband and my daughter by my side.

Here’s to the unsung heroes in all of our lives… for the STRENGTH and COURAGE they provide. Give them a call, or a text, or a hug.

It’s Complicated…

Published on December 22, 2015December 22, 2015 by beatingcowdens2 Comments

I just ended a 30 minute conversation with Meghan’s adolescent gynecologist. The fact that she spends 30 minutes on the phone with me speaks to a rare spark of passion for her field, and a genuine desire to help. These are things we clutch because they are uncommon, and, when they come at all, they are fleeting.

The long and the short of the pathology, which arrived earlier than planned, was that there was no malignant finding. Yes, you read that right. No malignant finding. (Insert Happy Dance here…)

And the gratitude for the prayers and positive energy was lifted up. We truly are always aware of the potential alternatives, regardless of our situation.

But, as is always the case with Meghan, I encourage you to keep reading. Nothing is ever really simple. And, as the years go by it seems to get progressively more complicated.

While in fact there was no malignant finding, there was not a purely benign pathology either. She had “the best type of hyperplasia you’d want to find.”

Except when pressed, the gynecologist admitted that there is no type of hyperplasia that you’d ever want to find in a 12-year-old, and that there should be nothing but normal cells there.

Hmmm. Hyperplasia. Medicine.net says…. “Hyperplasia: An increase in the number of normal cells in a tissue or an organ. Hyperplasia can represent a precancerous condition.” And various other sites say the same. The doctor agreed. The pathology finding was not “normal,” and therefore it must be treated.

See, hyperplasia, specifically endometrial hyperplasia might be detected in women 3-4 times her age. It might even be expected in women 5 or 6 times her age. But, her age is 12. And none of this is ok.

I pushed her about thinking outside the box, and she reminded me that the entire biopsy WAS thinking outside the box. Any other teen would have been treated for months or more on hormones. That could have had epic consequences.

In the short-haul, she gets to heal from an invasive procedure. In the next week more hormones will be introduced to her body in an attempt to keep the hyperplasia at bay, and most importantly to keep it from progressing. But, hormones, although commonly used to regulate bleeding, require special care in the case of a young lady with no thyroid, a difficult time balancing the endocrine hormones, an extremely elevated risk of uterine and breast cancer, thanks to the PTEN mutation, AND TWO first degree relatives, with estrogen fed breast cancer.

For now, she keeps her uterus. And we hold our breath. We hope that over the next few months things will start to calm down. And some time in the next 6 months the invasive biopsy will be repeated over again to make sure the hyperplasia is gone or behaving itself.

To Meghan this mimics the process that took place at the beginning of the end of thyroid removal. We had about 3 years of progressive biopsies before they decided to pull the plug and take it out. She knows, and agrees, that we will all fight longer and harder for her uterus. For so many reasons. But the similarities can’t be overlooked. Nor can the distressing notion that another body part is misbehaving.

When we were diagnosed in 2011 we were told there would be screenings and monitoring. We even figured on a few doctors every 6 months. At one point we dreamed of getting them all into a week in August and a week in February and living a somewhat normal life the rest of the year.

Instead, in Meghan’s life alone there have been 5 surgical procedures in the last 13 months. Digest that for a minute, because it’s hard to keep track of.

Currently we are monitoring her thyroid levels through blood every 6-8 weeks, visits twice a year, and annual ultrasound to monitor potential regrowth.

We are monitoring her knee where the AVM resides, through twice a year visits to the interventional radiologist and twice a year visits to the orthopedist. There is an annual MRI. And two of those procedures in the last 13 months have been for the knee. Add in surgical follow-up visits, and Physical Therapy.

The dermatologist needs to see her twice a year. Not because anything has been found on her, but because in addition to me passing the PTEN gene to her, apparently her father and I BOTH have Dysplastic Nevus, a “precancerous” condition where moles have a tendency to become malignant. Couple that with the almost 10 % melanoma risk Cowden’s patients carry, and in addition to the sunscreen, there are necessary scannings.

There is the gastroenterologist, who became necessary almost two years ago when the use of Celebrex to control the knee AVM started to rot out the GI tract.

And the ENT who was added so he could monitor the larynx to avoid unnecessary endoscopy but gauge improvement from the scary state she was in in May of 2014.

Oh, and the doctor who prescribes the digestive enzymes because they work, and no one else will.

And the pediatrician who doesn’t like to go more than 3 weeks without examining Meghan, who also keeps her on Acyclovir, prophylactically for chronic HSV that recurs on her face.

And, don’t forget the hand surgeon, who we love, (who doesn’t have a hand surgeon on the team?) who has twice in 3 years removed vascular lesions, one from each palm. And those surgical follow ups.

Nothing is neat and clean. Nothing is contained. Nothing ever fit into those 2 weeks we once dreamed about. This disease has projectile vomited all over our lives. And it’s everywhere. And it’s messy and gross, and we just want to take a hot shower and move on.

Because we haven’t even discussed fitting in MY appointments…

And a full-time job….

And an honor student….

Who is a swimmer….

And a theater buff….

And a community activist in the making…

All after work, and school, into the city, in traffic, and expensive parking lots, in hopes of getting back local in time for practice.

Last week I told Meghan over the Christmas Vacation we would need to see her gyn, and do her knee MRI, and my abdominal sonogram. She was less than impressed. The general sentiment is that we don’t get vacations, we get days off from school to go to the doctor. I can’t argue.

The physical, mental, and social ramifications of this under-funded, “orphan disease” are having a profound effect on the life of my girl, and her mom and dad too.

That is one of the main reasons we work so hard to raise funds and awareness. Maybe one day…

So tonight, we are grateful. We are on our knees in gratitude, for the prayers that were lifted on her behalf. We are thrilled to hear the words, “It’s not malignant,” but we are painfully aware the journey of monitoring another body part has just begun.

So if we are not shouting from the rooftops, please don’t think us ungrateful. We are not. We are relieved. We took our first deep breath in weeks. But, we did ask Santa for some new body armor, polished and ready for the new challenges PTEN Hamartoma Tumor Syndrome, (Cowden’s Syndrome) are actively placing in our way.

We ask that you continue your prayers, and continue to educate yourself about genetic cancers, orphan diseases and people like us, left to be our own advocates, in a world that isn’t overly concerned with how our story shakes out.

While we are in transit, to and from a lot of places we’d rather not be, we talk a lot. Most of it is complicated. But some of it, is quite simply about how a 12-year-old with a vision is going to change the world.

Come join us on FEBRUARY 21st as we try to draw attention to Rare and Genetic Diseases! Beating Cowden’s Fundraiser LINK – PLEASE HELP US SPREAD THE WORD!

Time with "BOB" our favorite entertainer... — Time with “BOB” our favorite entertainer…

Overwhelmed

Published on December 17, 2015December 17, 2015 by beatingcowdens4 Comments

Someone tried to steal my credit card today. Online purchase of almost $1000. We are pros at this. Text alert. Call to Chase. Charge suspended. Crisis averted. We are pros at being hacked. One day I’ll figure out why. Right now I don’t have time. I’ll be busy calling E-Zpass, and all the other automatic charges on our only real credit card. Whatever. I have to laugh. Cause if I don’t I might cry. And that would cause a headache and be counter-productive.

I have serious attention issues. Probably because everything I touch seems to morph into a few more things to address. More phone calls, more emails, more papers, more appointments.

My life is not that bad. Truly. I know I’m in good company. Chaos abounds and if you don’t appreciate some of it, you’ll regret missing it. But, the thought that someone would want to BE me makes me laugh a bit. Or maybe they just think I’d be too busy to notice…

Yesterday Meghan was scheduled for a biopsy at 3:30 PM. That is a rotten time for any surgical procedure. It involves a full day of fasting, anxiety and the like. We arrived at 2:30 and got checked in. Then we waited. And at 6PM when I finally walked with her to the OR she was dizzy and light headed from nerves and a day of not eating. Hours delayed. Cause, why not?

It sucks that my 12-year-old knows what a biopsy is. It really, super sucks that she has had so many. It’s helpful that they’ve all been negative so far, but the notion that “luck” will run out at some point looms. She knows all about pathology and wonders if it will be back before Christmas. I am often struck by the notion that all of this is unfair. But, I have always hated the people, young and old, that whine about things that are “not fair.” The struggle not to become THAT person is real.

I write to bring back my focus. I write to get the thoughts swirling around in my head back into good order. I write because it makes it less awkward for the people who actually want to hear about our lives, but don’t know what to say. Some days the task of organizing these thoughts is much easier than others.

We are at a point that our lives are overwhelming. I don’t just mean busy, like in a typical, school, activities, homework, sports, etc. kind of overwhelming. I mean they are overwhelming in the medical sense. We are past the point where we can even really talk to most people about what’s going on. I get to kid around a little when I talk about needing my spleen tumors scanned again, or my implant lifted, but it’s hard to share the true tears of frustration I feel that I will have to do that with a new surgeon because mine sold her practice and is now out of network. I keep the tears I cried about that tucked away.

In fairness, what do you say when you are discussing the umpteenth medical procedure of your 12-year-old, when most adults you know have only had one or two surgeries or procedures in their lives?

How could I expect someone to even respond?

How do you explain that we have “operating room routines?”

What can you say to soothe the lonely pain of recovery. Again?

Nothing silences a conversation faster than a discussion about the uterine biopsy of your 12-year-old daughter.

Nothing silences her cell phone faster than trying to just share a little of that enormity.

Truth is, we know. We know we are loved. We know we are thought of, and virtually hugged, and prayed for. We know.

But, when so much of your life is swallowed up in medical procedures that you really can’t talk about – it gets lonely.

She’ll need another day on the couch. To recover fully. Her Dad will stay home tomorrow. They will watch some TV, and talk without speaking. They are good at it.

And Monday, she’ll head back to school, awkwardly searching for the fine line of politely ignoring the enormity of her life, and sharing just a little with those who are brave enough to ask.

Please don’t take any of this the wrong way. We appreciate the love, and texts, and Facebook messages, and Emails. We love all of you. And we are sure we’ve missed some key things in your lives too.

It’s just, well, the reality of this Cowden’s Syndrome, the enormity of the 5 surgeries in a bit over a year, the gut wrenching notion that it won’t quit – ever, the frustrating planning of two scans and a doctor’s appointment already eating up the next “vacation,” the waiting for the pathology report for the polyps that just don’t belong in the uterus of a 12-year-old, well, honestly… It’s just overwhelming.

I think that’s the word that describes my thoughts best. Overwhelmed.

Now that I’ve got that organized, I’ll get back to the business of

BEATINGCOWDENS!

I Found the Christmas Spirit, at the Grocery Store

Published on December 5, 2015December 5, 2015 by beatingcowdens2 Comments

She could have ignored the tears in my eyes. She could have beeen annoyed by my lack of focus. Undoubtedly she was tired. It was Friday night, and after 8. I would never see her again. It would have been so easy to look past my face, and my shaky mannerisms, and rush my order through.

But, she made eye contact. And, she asked me if I was ok. And, she meant it.

Although every rehearsed part of me wanted to recite the appropriate line, the one that says, “Yes, I’m fine thank you…” I just couldn’t get my mouth to form the words.

A sigle tear fell down my cheek. And then another. I was in the grocery store. A ritual every third Friday, miles from home. By sheer grace alone no one was behind me.

As the words came tumbing out she made eye contact. She showed compassion. As I rambled about the doctor who had just called me, on my cell phone, after 7 on a Friday night, and the raw fear I felt for my 12 year old, she listened. At the grocery store.

A quick summary of 12 years of ill health and yet a bright, beautiful young daughter who defies all the odds. A few words about the 4 years since diagnosis with a rare, genetic mutation that causes benign and malignant tumors. A brief sentence about the constant battle to keep the malignancies at bay. The terrifying, bone crushing fear that we might be losing.

She bagged my cart. She found my shopper’s card. She reminded me where to sign for my credit card.

And then she did something that I will never forget.

She called her manager. And at first I didn’t understand. Then, she said, “I’ll walk you to your car.” It was cold. Almost raining. She didn’t flinch.

She told me about her own experiences with missed and bumbled diagnoses. She told me she hoped my daughter would be ok. And she meant it.

Somehow I got home that night. The nightmare still continues. But, this woman….

In this busy holiday season, where we sometimes forget what really matters, she cared. At the exact moment when I needed someone to care, and I was surrounded by complete strangers, she cared.

I don’t even know her name. But, she reminded me about Christmas spirit. She reminded me that people care. She showed compassion to a stranger.

She has no idea how much she did for me.

She sent me right home to hold the one who matters most.

This kid. My stength. My motivation. My hero.

Dear Stress, Let’s Break Up…

Published on November 25, 2015November 25, 2015 by beatingcowdens3 Comments

Because truly I’m getting bored of you. I’d like try to spend some time with Serenity, or Sanity, or Relaxation, or maybe Peace.

I know I’m bad at ending relationships. I get attached even to things that are just wrong for me.

I make excuses. I have a hard time letting go.

And you, well you are relentless. You keep finding ways to get in my face.

Yesterday you played nasty. I had a simple appointment. Do I need the implant replaced or not? And somehow it turned into an insurance nightmare and a need to consult with a new plastic surgeon. The surgery will be. But at least it’s not urgent. Sheesh! I needed to fit in a consult with a NEW doctor? You know how much I LOVE new doctors right? AND EXTRA trips to the city. My complete favorite.

And as I tried to reach Meghan’s doctor to get things scheduled I hit so many roadblocks it was like you were just taunting me with your tongue out. I get it. Long weekend. Except it’s TOO long if you’re waiting on things like this. I cried. I admit it. You got to me.

But you know what Stress? You’re taking up too much energy. And once again my kid set me straight. She swam one heck of a practice tonight. She will swim her December meet. I owe it to HER to work around her passions. We even chuckled, knowing the reality of what she COULD be facing, and the super importance of her swimming, and singing, and acting. No matter if the doctor understands. God help me no matter if it delays things a few days. (Breathe in breathe out…) cause we have to prioritize.

Stress you don’t like focus. You like chaos. You like drama. You like mayhem. I doubt you’re gone for good. But we are so over you.

Excuse me while Peace, Serenity and I dig out the Christmas tree.

I will release you with my mind. I will release you with my energy. I will release you using ADAPTOGENS. I’m really not interested in you…

We’re too busy- BEATINGCOWDENS!

Making the Most of It All…

Published on November 10, 2015 by beatingcowdens2 Comments

Sunday night, coming home from a swim meet, Meghan outlined her goals. Among them included, “no surgery for a whole year.” To someone who hasn’t had 4 surgeries in the last 12 months, that may not seem quite that important, but to Meghan it was at the tip-top of the list.

Over the last several years she has spent more time living in “recovery” than just living.

She dropped 16 seconds total off her event times at this month’s meet, and 17 last month. Insanity. Except to a young lady who is now growing into herself, and her abilities.

She wants to swim. Hard and often.

She wants to soar academically – no average under a 95 will do for her.

She wants to act, and sing, and be on stage.

She wants to participate in her youth group, and retreats, and live her faith.

She wants to raise community awareness of Cowden’s Syndrome and rare diseases.

She is on the move all the time. I know, because I am with her. Or helping her stay organized. Or transporting her at least.

This weekend we drove 200 miles. Today at least another 60. LOTS of time for car chat. Lots of time to get to know each other well.

Sometimes she drives me crazy. Sometimes I frustrate her so badly she wants to scream. Sometimes she does homework, reads, or works on projects. But, lots of other times we talk. About anything and everything. And as much as I hate traffic, and long distances, I’ve learned to make the most of our time in the car. I’ve learned to appreciate my captive audience, with the realization she won’t be in my back seat forever.

As a matter of fact after today’s appointment, she could easily be in the front seat. All the time. At a very trim waistline, and a height of almost 5 foot 7, she presents as YEARS older than she is. Which I sometimes have to remind myself when I am busy expecting her to have it all together. Sometimes she still needs me to help her along.

Today was the knee surgeon. Six month follow-up. He sees the shift in the patella. He feels the scar tissue, and the clicking. But, he said, she can wait. She can wait until she’s ready before he cleans it out again. With Cowden’s it’s a fine line. How much pain can you deal with? Because every surgery will lead to an overgrowth of scar tissue which carries its own issues. Drag your feet. Know when enough is enough.

Next we will have an MRI to check on the AVM. As long as that’s stable, we should have a bit of time. A bit of time to do some things besides recover. A bit of time to be a bit more like a “normal” busy 12-year-old. Well, like a “normal” 12-year-old planning a fund-raiser for more than 150 people with her favorite Disney entertainer… But, hey, she dreams big.

Tomorrow she goes to another doctor. And about this one I just pray. A lot.

In two weeks I get to remind myself I have Cowden’s with an unplanned visit to my plastic surgeon to question a poorly behaving painful prosthesis.

Plenty to preoccupy the mind. In our immediate and extended family.

One day, one event, one obstacle at a time.

I did start my Christmas shopping. After 2 years of holiday sadness, I am craving joy, and celebration. I am craving the anticipation of the birth of the baby Jesus. I am determined to remove myself from the holiday hustle and bustle. I am determined to set my mind right. Because none of us ever know. Really. And there is no promise of tomorrow. Really.

But organization makes me happy. And it’s about being happy. And making the most of it all. All the time.