Light Through the Lens…

Published on December 4, 2016 by beatingcowdens3 Comments

I think I blinked, and the calendar changed from October to December. Some weeks I can do nothing more than plan day by day, because to look too far is overwhelming. But, I “lost” the fall in a beautiful way. I lost it shuffling my girl to places she loves to be, and helping her apply to high schools she is excited about. Four years ago I could not have imagined she could keep this schedule. She battles for it every day and I admire every ounce of her determination. I take nothing for granted, and I know a huge “doctor cycle” is soon to be upon us. Meghan’s appointments begin late this month. Mine will overlap, likely culminating in vocal cord surgery. But, for now, for this moment, I am grateful for this chaos. The hint of “normalcy” is not to be left unappreciated.

Today though, I blocked out some time. Today I needed some time to sit in my office and look around. There are beautiful images on the walls of my office from New York City to Washington state – and places in between. Each is carefully watermarked “Leon G. Thompson,” a process that took my husband countless hours. There are thousands of such images on my laptop and several backup drives. You may have no idea who “Leon G. Thompson” was, but I can tell you these pictures are more valuable to me than any you’d find in a museum. Leon G. Thompson was my father, and these pictures are what he left behind on 12/4/13 when cancer snatched him from us far too soon.

“A Few Good Men,” has been far more than a movie title in my life. I was blessed to have 3 grandfathers that shaped who I am. I am equally blessed to say I have had two fathers mold me into the woman I have become. My Mom’s husband Ken came into our lives when I was a teenager, but he has been, and continues to be an unshakeable source of everything from “fun facts,” to computer tech, to house repair and all things in between. There is a special place for a man who steps into a marriage with 2 teenage daughters in tow, treats them as his own from day one, and never skips a beat.

My father, well… let’s just say the early years were rocky.

What I know now, but I didn’t know then, clarifies a bunch. Dad, a Vietnam veteran came home lost. The earliest years are peppered with memories that don’t leave “the warm fuzzies.” The years after that hold memories of fun visits. Dad would come by sometimes. There were movies, and visits to the park and the zoo. There were restaurants, and exciting novelties. But, there was not consistency. There were chunks of empty time. There was a lot of wondering.

Contact got more steady in the teenage years, especially after my brother was born. There were more visits, and more phone calls. But, history sometimes repeats itself, and there were years that faded away again.

Later, after high school, and probably after college too, there was more. Maybe I was ready. Maybe he was. I’m not sure. But, slowly and carefully, over years, a relationship began to form. By the time I got married, I was able to dance with my Dad, (and Ken, and my Pop :-)) and I will cherish the memory forever.

After my daughter was born, he started showing up more. And I liked it.

Hard times came for Dad, and the restaurant industry finally failed him. And that low for him, was the point our relationship became solid. Nothing happens overnight, but he was here. Close. Interested. Available. He helped pick up Meghan. He came to birthday parties, and dance recitals, and swim meets. He came by for Father’s Day and even celebrated a birthday with us.

It was during that time that he first spoke the words I’d been waiting to hear since the second week of my Abnormal Psychology class in college.

“I have PTSD. Do you know what that is?”

“Yep. I know. (and I exhaled a sigh I’d been holding in for years..) And it all gets better from here Dad.”

He was stunned. He had no idea that his entire adult life spent making poor choices, ducking relationships, and often shying away from those who loved him most, were just a few of the symptoms of PTSD. (Post Traumatic Stress Disorder) He couldn’t imagine that I had already pieced together that unspeakable horror encountered with his Marines in the jungles of Vietnam had impacted, to the point of changing, and really shaping his entire adult life. 13 months in that war, and not a day, a single day, ever went by without it influencing his thoughts and behavior. I was able to pick up from a text-book the reasons why he had shied away from our relationship. I was able to know in my heart that he couldn’t risk expressing his love, showing up, or being truly “present.” But, in that moment, hat moment when he said it THAT is where I got him back.

I can’t say I remember the day. And I may be wrong on the year too. But, it was sometime around 2009. Finally, he was working on his own healing.

And he worked hard.

We spoke more regularly. Once a week usually. Sometimes it was his turn. Most of the time it was mine. As I struggled through raising a chronically ill child, he became my sounding board. He was my confidant of all things. He was where I went to bounce the tough decisions. Because, life had left him a great listener. Raising a child with a rare disease, means often having to make really tough choices alone. When your disease affects only 1 in 200,000 people, experience with it is limited. When Cowden’s Syndrome manifests differently in each of that small number of patients, including myself and my daughter, there is an even lower confidence interval with doctors who often just have no idea by no fault of their own.

It is hard to hear over and over again that a child is ill. Especially, when it is your child, or your grandchild, or one you love so much. I have had to make so many unorthodox medical decisions, that I often just needed someone to hear my thought process, and let me analyze, and over-analyze. I have gone against the doctors to trust an instinct that was strong in my mind and my heart. Dad was the one who could hear it all out. He heard me without speaking. He listened attentively. He offered advice only when I asked, and offered encouragement always. These were not situations where I just needed my ego stroked. These were tough conversations to have, and he never ever shied away from one.

He simply would bring me back to reality. He’d ground me by telling me to use Meghan as my guide. Check on her health, physically and emotionally. Focus. Trust my instincts. Be able to correct wrong decisions whether they are mine or theirs. Still now, three years later I find myself aching for those conversations. She is stronger. She is tougher. She is amazing. But, there are still so many battles to face and so many difficult decisions to make. That’s when I retreat to my office. I sit in his chair, and I look up at the path of snow in central park, or the Washington mountain top, or the waterfall, or the rainbow and I think. I talk the conversation through as if he were here. Because I know he is. I just have to listen really carefully.

Dad told me once that I understood PTSD because Meghan’s medical battles had left me some ways in a similar state to him. When she was younger, and so sick, that perpetual fear of losing her, the hospitalizations, the surgeries, left me with a need to he “hyper” aware all the time. While I could never profess to connect this to the horrors of war, he did. And I think it allowed him to open up with some of his own stories.

Through those years I heard tales from his mouth I had never known. I heard of battles, and losses and names of people, and places. I listened so attentively. Quietly. As he had done for me. Sometimes I even took pen and paper to write down his story. Because I wanted to hang on every word. Because you just never know.

I found out Dad was sick when I made that Friday night phone call in October 2013. His voice sounded a little off and he told me he was in the ICU at the VA Hospital in Brooklyn. When I asked him if anyone knew he said he wasn’t too sure. But, he said, “now you do.” And he laughed, as only he would at that moment.

I got to the hospital the next morning and we went through the details. At that point no one knew anything. Confused doctors was a topic we had spoken about at length.

The 10 weeks that followed were just a long blur. There were about 4 weeks of me forcing his hand to allow me to take him back and forth to his appointments. Sometime after that he admitted he couldn’t drive himself. That was a tough day. I had already called in my sister, and it was time to reach out to my brother in Texas. Family meeting. The “team” assembled.

And through the some of the toughest weeks, I bonded in ways that can never be broken, with a sister I have always had, and a brother who I was getting to know better than I ever had.

Dad was admitted to the VA on Thanksgiving of 2013, and one week later, on December 4th, we were by his side when the angels came to free him. No more suffering. No more PTSD. Pancreatic cancer at age 65.

I dialed his number for months after. I still know it in my heart.

I spent the months after he died cleaning out his apartment. Dad was not a man of many “things.” His iPhone held no Email, and only one photo. “Never want to put too much information in one place,” said the man who in his soul operated always with the mentality of a 19-year-old combat Marine.

As I cleaned I took every single scrap of paper he had ever written on and clipped them together. I laminated them. It was to be the only way we would ever “talk” again. It is Dad’s quotes scattered through this piece.

He loved light. And I guess for a man who had spent so much time fighting the darkness, his love for light made sense.

Dad was, to our family, and friends, a photographer. “Tom” would have a camera around his neck at all times. He took joy out of capturing happiness. He took pleasure at photographing family events, and sharing his photos with everyone. As we sorted through the pictures, in the months and year or so following his death, we saw some incredible images. We sorted out the family shots from the scenery ones. We put up a sharing site for all those family images in case anyone had never seen them. And we protectively shielded his “scenery” images, and carefully watermarked them, and kept great pains to keep them off the internet.

At some point we will organize an art show in his memory. We will print, and sell his treasures. We will find a place to donate any profits that will honor his memory. We will let the world see what he saw. Dad used that camera lens to showcase the light. To view the beauty in the world. Consistently, when I look around I see “Light Through the Lens…” and in doing so I keep his memory alive.

Dad did not leave us rich with money, or objects. He left us rich with visions and memories. The former keeps you satiated for a little while. The latter can keep you fueled forever.

The last gift Dad left for me, was one I did not see coming. In the weeks preceding his death it had become apparent to me that there was a specific incident in Vietnam that clearly should have warranted him a Purple Heart. I gathered data for him, presented the case, and even after denials came in, and he had passed, I kept fighting.

Holly, a treasure in Dad’s life and ours, had held onto a list of names and addresses from a Marine Corps Reunion they had attended many years prior. I reached out to every Marine in that list, and if they were still alive, they reached back. Over 20 of them. 45 years later. I grew up knowing Dad had 7 brothers and a sister. I had no idea of the Marine brothers scattered around the country.

I have had the pleasure of meeting many of them. And this past summer I brought Meghan to meet a few too.

Alan was the first to answer my letter. From West Virginia he called to tell me he remembered crossing time with Dad. He researched the story I told him about the incident. He found it totally credible, and helped me exhaust every option and every appeal to the Department of the Navy. Ultimately that battle was lost on what I call a technicality, but by that time I had a friend and a confidant in Alan, previously a stranger.

My Dad, although not loyal to a particular church, by the time he died had a solid faith in God, forgiveness, and an afterlife.

I do not know the book this came from, but I found this among his clippings…

My Dad in his passing, solidified my relationship with my sister, essentially “gave” me my brother who I had never really “known” but will NEVER let go of, AND, secured for me a confidant in Alan, and gave me the gift of loyalty that Marines save for their own and their families.

He left thousands of photos. Snipits of his own words, and memories of times that we got it right.

I ~~sometimes~~ always wish that he would answer when I called him on the phone. But, I know. I know that he is flying free. And I know, that while he needn’t be saddled with the cares of this world, that he checks in. That he is nearby when I need him the most.

So when we are driving in the car and Meghan snaps a shot of a sunrise, or the light coming through the clouds in the sky. When she sees the beauty of the world around her. When she looks for the good. When she keeps her friends list short and neat, I see my Dad. I feel him. I know he’s right there for that moment.

Courtesy of Meghan on a road trip to WV to meet the Marines. Always being guided by the light…

Only when you love deeply do you feel great loss. They all hurt. The oldest to the newest. I can not change the way I love. When I love it is with my whole self. Otherwise, why?

This one hurts differently because it took so long to get it right. But, I rest with the gratitude that we did get it right. And once you get it right, if it’s truly right, nothing before that matters anymore.

You may never know the strength you gave to help us remain

#Beatingcowdens

Semper Fi Daddy, Always.

04/18/48- 12/4/13

Loved. Missed. Remembered forever.

Default to Kindness

Published on November 5, 2016 by beatingcowdens3 Comments

Meghan loves to swim. I mean, athletically it wasn’t where she started, but the knees. Six surgeries on the right knee, and there was to be no more soccer, and no more dance. After the 6th one, there was to be even no more breaststroke. There is no gym class in school. There is limited walking. There is one foot, a size bigger than the other. The “off sides” that that creates in her body can be quite painful. But, the pool…

Oh, how my girl loves the pool. She is an athlete. She is a competitor. And the pool allows her to be both of those things to the best of her ability.

For the 3rd time in the 4th year since joining swimming, this September brought a new coach for her, and a new group of teammates. There was anxiety about the switch on so many levels. But, as we always say, life has a funny way of working out.

This coach is a perfect fit for her. They practice hard, and often. He is structured, and firm. But he is compassionate, and constructive. He watches. There are sometimes 50 or more swimmers in the pool when he coaches, and I swear he does his best to make some comment to each of them every practice. And, after they compete, his feedback always connects to practice.

And practice, for Meghan, has not been a problem. While maintaining a “Pupil Path” account that no one could ever critique, and planning a major fundraiser, and looking for high schools, and managing doctors appointments, and a mom who doesn’t feel quite herself, this girl has, most weeks, attended practice, Monday, Thursday and Friday afternoon, as well as Tuesday, Friday, and Sunday morning. Quite literally, swimming is good for her health.

Swimming can be a very solitary sport. It takes a good deal of mental toughness to stare at a black line for hours. Interactions with teammates on deck or during dryland (out of water training) are cherished.

Even then, as the “new kid” in the group, you can sometimes wonder about the relationships. Meghan has been very careful not to share too much of her Cowden’s story with these swimmers. She wants to be viewed as one of them, and she is doing a good job holding her own, all by herself.

And then there was today. We were at a meet and she was scheduled to swim the 200 yard butterfly. If you swim, no explanation is needed. If you don’t let me give you a frame of reference. For the group she swam with today, 72 girls swam the 100 yard freestyle. 10 signed up to swim the 200 yard butterfly. It is not an event for the faint of heart.

Meghan feared disappointing, herself, her coach. me. She was scared out of her mind. So scared that it was out of character. Out of character for a child that has had 17 surgeries, and countless tests. ER visits, and hospitalizations. She was that scared.

And as the race approached I watched helplessly from the stands as she began to unravel. And I watched with a grateful heart as teammates picked her up and put her back together again.

The one who I can only say was acting as my angel, talked her right onto the block. It only took a second of my attempt to video the race to see that something was terribly wrong. There sat her goggles, first mid face, then in her mouth occluding her breathing. In butterfly you can not break stroke. At the end of the first 50 she stopped. She was done.

My heart sank, and ached for her. I wanted to pick her up and hug her, and take her back to the rocking chair I used to use when she was a baby. But she’s 13 now – so I could only watch.

The official came to her and asked if she wanted to try again in the next heat. There were 2 lanes open. She said yes. And as they placed her in one heat, her friend, my angel, came to the official and asked if Meghan could swim, “in the lane next to me.” She said yes, and as Meghan barely got settled on the block, another teammate flagged the official to wait a moment. Meghan’s goggles were still not on.

The start went fine this time. The goggles stayed on. And she did it. The whole thing.

By the time she got to her last 2 laps, most of the other girls were finishing. But, then there was more magic. There was cheering, from her teammates and strangers alike. There was a push for her to get finished, to press on, and to make it. So, she did.

I think I cried the last two laps. I was struck by this child of mine, her life, the adversity, and the stubbornness. The ability to not give up. The desire to be normal, and to succeed. And as she touched the wall her team mate, that same angel, swam right into her lane and gave her the biggest, most genuine hug.

She did it.

Not too shabby for the first time. And more than one teammate whom she respects greatly told her they gave her credit for getting up and trying it again. So did her coach.

Meghan isn’t the “cool” kid. She sometimes struggles a little. But, she remains true to herself at all times.

Today, she got to see the kindness in others. It was pure. It was genuine. It was unsolicited. It was the best kind.

13-18 year olds can be a tough group. But these kids showed today that when they are left at their “default” setting, when they are alone and see soemone hurting, they will choose kindness and compassion.

She is asleep. Tomorrow is another day of swimming. But, those events won’t cause this angst.

Gratitude fills my heart, that once again even at the toughest moment, good shines through.

And as she said goodnight, she told me, “Next month, when I swim the 200 fly…”

Endurance. Persistence. Stamina.

#beatingcowdens

Laugh Out Loud

Published on November 5, 2016 by beatingcowdens5 Comments

We use the phrase all the time. Anyone who texts or uses any social media understands LOL. But, today I got a more clear explanation of why it’s essential.

At Voice Therapy this morning we talked about “habits,” things I may be doing without realizing it to strain my voice.

I was told that both laughing and crying can be damaging.

Crap. I’m screwed. Laughing and crying are things I do- often.

But, she explained. Laughing, or rather “fake laughing” when you hold it in your throat is stressful and damaging. When you laugh, you should laugh full and from your belly. You should, for lack of a better phrase, “Laugh Out Loud.”

Well, ok. This I can do. My husband cracks me up. I mean most of the laughing I do in my world originates from him. And it’s the kind of laughing that’s so loud and clear that I often find myself praying there is no belt on my jeans. This laughing is just fine.

The laughing that is no good, is the fake laughing. Go ahead, try it. When you want to make believe you think something is funny and what comes out is a huge fake smile and a small throaty chuckle. This is no good. And you know what? I’m ok with that. Laughs, like anything else should be real. If I must be social, a smile will do.

I was also cautioned that crying can be damaging. This one worried me. I am not a depressed soul, but the way I stay sane is to live my emotions. I cry- when I am thrilled, nervous, sad, worried, happy, and other times too. This I could not give up. But I breathed easier when she explained. The crying we hold in, is the damaging kind. It ends up getting stuck in your throat and causing all sorts of problems. However, if you cry, and let it all out – it’s just fine. Makes sense really.

Live – out loud. Laugh out loud. Cry out loud. Don’t hold it in. I’m quite sure to do so damages more than your vocal cords.

Getting up early on Saturday bothers me a lot less. I like her. She makes sense. Good voice and life advice over a cup of tea.

And every day she makes

#beatingcowdens

a little easier.

Miles to Go…

Published on September 27, 2016September 27, 2016 by beatingcowdensLeave a comment

September is a marathon of sorts. Although all the training in the world can never quite prepare you for the twists and turns needed to navigate it through to completion.

September is establishing new routines, in my own classroom, and in our lives. September is learning new students, and new teachers.

Each year, it is about pushing our bodies farther than we have ever been able to. It is not just about surgical recoveries, or broken toes, it is about swim. So much swim. It’s about swim before sun-up, and afternoons too. It is about drama and singing and doctors in between. It’s about finding the inner strength to press on.

It’s about balancing it all. Work, school, after school, meetings, and the like. It’s about stopping to find the beauty, and the sunrise, and the simple pleasures along the way.

This life, this chronically ill life is lonely. I’m not going to lie, or even try to sugar coat it. It is lonely. But, we three in this house embrace and press on. Because, really, there is no alternative.

There is no fault, no anger, no resentment. Reality is that every moment is spent using all the “spoons” we have to get through. At this moment there are no extras. Family and friends who comprehend will still be there with open arms when there is a “spoon” or two to spare. The rest will have found their own way, and that is a loss we will have to take in stride.

Everyone has something. All lives are busy. All lives have joy, and angst. All we can do is take what is in front of us and do the best we can with what we have where we are.

The worry in my heart runs deep. There is reason for it, yet I battle it all the time. It can not, nor will it, define me, or our lives. Regardless, it lingers always, lurking in the shadows.

My girl continues to amaze and impress with wisdom beyond her years.

For her birthday Meghan had a very specific request this year. One of her gifts was, “The Unabridged Poetry of Robert Frost.” I was familiar only with one of his most famous poems. Meghan read this book fervently for most of August. I think I understand why now.

Lab work tomorrow to keep those thyroid hormones in check. We need our strength to remain

#beatingcowdens

On Your 13th Birthday…

Published on August 8, 2016 by beatingcowdens1 Comment

August 9, 2016

Dear Meghan,

As I sit to write this some time in the middle of the night, I am reminded of the early years, when so many of the middle of the night hours belonged to the two of us. Yes, Meg, I said YEARS.

You struggled my girl, but your determination was evident early, like the day the NICU nurse called you feisty. She was right. And it has proven to be one of your finest and most valuable attributes.

When I look back on pictures of those early years, it doesn’t seem all that bad. I guess I never had time or desire to photograph some of those tear-stained days. And maybe. if it wasn’t for the colicky cry seared into my brain, I might have even come to forget that you considered sleep optional, crying and screaming mandatory, and that carrier pouch a requirement for all things. At one point we had even taken to calling you a kangaroo baby…

But, I look at the babies in those pouches, And I think to those mother’s “enjoy it.” You might find this hard to believe my dear, but there is not a single minute I would change or do over. Every step along this journey with you has BEEN the journey. And I have the deepest gratitude that God selected me to be your mother.

The path hasn’t been easy. Sometimes it’s been rocky, and a little unsettled. Other times its been like traveling through fire. On a bicycle. With no handlebars. Backwards. But, I think we’ve all found pieces of ourselves we never knew existed, and there is a family bond between you, and me and Daddy that so many envy. Not for what we’ve done or where we’ve been, but rather the fact that we have done, and continue to do it all together.

At eight years old, you were tossed a diagnosis of a Rare Disorder, a 1 in 200,000 PTEN Mutation called Cowden’s Syndrome, that has leveled many grown adults. But, by eight years old, you were already seasoned at doctors, OT, PT, and speech. You’d been there, and were still doing dome of that. At 8 you were intimately aware of what it meant to spend hours waiting for doctors, and you had a clearer visual of an operating room than anyone should ever have. So really, in reality, that diagnosis just pushed us in the right direction to continue to help you become who you were meant to be.

It’s rotten to be the “unusual one” the one with all the risks and the need for that “hyper-vigilant” surveillance. But, I’m thankful.

See without Dr. Jill to push us to your diagnosis, without all those things falling into place, it’s likely I wouldn’t be here to write this. Your diagnosis led to mine, and while I am intimately connected with the reality there is no guarantee of tomorrow on this earth for any of us, my heart is sure that you, my angel, my gift, you my dear saved my life.

I watch you with each passing year, and the challenges pile on top of themselves. And we both sometimes want to stop the presses and scream, “IT’S NOT FAIR” and the top of our lungs. but then we laugh. “Fair” is just a silly word anyway. It’s not the perspective we use. It’s not worth our time.

You approach this birthday with 17 operating room trips under your belt, and too may ER visits and, tests, and hospitalizations to count. You have had to make decisions, and think thoughts that are beyond the scope of what you should contend with. But with grace and dignity you proceed, because none of that is what defines who you are.

Grace,. Poise. Strength under pressure. — Grace. Poise. Strength under pressure.

Despite unimaginable pain, you press on. Your body would not allow for dancing school or soccer. But the competitor in you was not to be silenced. Running was out of the question, so now you “fly,” in the water, 11 months a year 4-5 days a week for hours. You pull energy out of the crevices of your toes to push through when most would curl up and give up.

First season swimming, a few weeks in. Spring 2013

2016 Working on her "fly" — 2016 Working on your “fly”

You press on in the community, focused to raise the necessary founds the PTEN foundation will need to create our patient database. But, you will not turn your back on the charity where you began, Global Genes, “for the babies who can’t speak for themselves,” you tell me. You make flyers, select venues, advertise and collect raffles. You speak at schools and organizations across the Island who will have you, to raise awareness that rare diseases are everywhere. For the last 2 Februaries we have celebrated Rare Disease Day with almost 200 people, gathered because you have a mission.

Youngest “Woman of Distinction” recognized in Albany by Senator Lanza in May. Proudest parents.

I watch you talk to people and I swell with pride. When you’re intermittently stuck in that wheelchair you hate, you decided to help the doubters, the starers and those passing judgment. A simple business card with a phrase you helped create “Cowden’s Syndrome – Rare. Invisible. Real.” It starts a conversation, or it ends the behavior. Either way you manage with grace to rise above.

You take the high road so many times a day. I know it’s not easy. And I know there are people in your path every minute determined not to make it easy. But, truth be told, as we are learning, there are others out there. There are real people, at swimming, at youth group, at SICTA. There are real people who are finally recognizing that you are pretty spectacular. And I don’t mean that in a ‘who is better than who’ way. I mean it in it’s best sense. Everyone is spectacular in some way. You just learned it a little early.

As you turn 13 this week, I wish you so many things, from the depths of my heart and soul;

*Never lose the magic. Ever.

*Never compromise yourself for anyone. Remember that doesn’t mean to be brick wall stubborn. It means to keep those morals. Rise above.

*Always remember no matter how wild and crazy the world gets, you’ve got two parents who will love you regardless… and that is a PROMISE.

*Smile, sing, laugh, act, dance, be sarcastic, and sensitive, and guarded and silly, with a healthy touch of humor thrown in. Do it all always with respect.

*Continue to constantly take every obstacle tossed at you, and it toss it back, or walk past it and move on. When they tell you you can’t, find a way to show them you can.

*Never let anyone make you feel less than. You, you are enough. You are always enough. God said so, and He is smarter. Trust.

*”Be the change you wish to see in the word.” – Ghandi

Your teenage years will be a giant path of self-discovery. It won’t always be smooth. But nothing is.

Be you, and it will fall into place. And in the off chance that none of that works, I’m not going anywhere.

I love you from the bottom of my heart. You truly are the child I was meant to have, and there is NO ONE I’d rather be #beatingcowdens with, than YOU!

Happy 13th Birthday! You will always remain, “My Most Thankful Thing!”

I love you ALWAYS,

Mom

*Thanks for bringing out the best in me. I love you more than you know.*

Body Betrayed

Published on July 30, 2016July 30, 2016 by beatingcowdensLeave a comment

The first time I felt the pain it was last summer. It was under my right implant, and from my armpit a bit down my side. The pain lasted a few days and then eased itself into a chronic state of discomfort. I went from almost 4 years of barely noticing, and sometimes forgetting the silicone implants that had replaced the breasts in their earliest stages of cancer in March of 2012 to thinking about them all the time.

Now I knew the right one was there. And it was bothering me. For physical, and deeply psychological reasons. It was getting in my head. Messing with my focus.

I went to see my plastic surgeon in November of last year. I adored her. I wanted her to make it better. Her words were reassuring to a point. The implant was intact. There was some minor movement. I should get it taken care of but it wasn’t an emergency.

Then there was the bombshell. She was no longer accepting my health insurance. I definitely cried right there in the office. She cried too as she apologized, handed me the name of the doctor I needed to see and scurried out of the office. I still adore her. But, I’m sure I’ll never see her again.

So, faced with the reality that I needed to start over, on a journey I wanted to forget ever happened, I did the logical thing. Nothing.

I lived in a state of denial for months. And slowly I started to restrict the activities I would do with my right arm. Certain basic tasks would make it bothersome. Fitness-wise, push ups, planks, weight lifting, and even the elliptical were out. I no longer trusted my own body weight on that arm.

One day in December I mustered up the courage to call the office of the new doctor. It took a lot. I trembled. I had my calendar set up for January and February. I was ready to schedule that consult.

“Late March…”

I heard nothing past that. After I was told the earliest appointment I could get for a consult was late March. I hung up the phone and did what I do when excessively frustrated. I cried.

When I saw my breast surgeon for our annual check up in February, she noticed the subtle problem. She asked who was looking at it. She also proclaimed it, ‘not urgent.’ I told her about my experience trying to get an appointment with apparently the only plastic surgeon that does breasts and takes my insurance left at this hospital. She vowed to have her scheduler help me get in.

I met with the scheduler.

I never heard from her again.

March came and went. Life was busy. Meghan was in and out of surgery, Pop had been so sick, Grandma was struggling, we had the fundraiser…I found a reason not to call every single day.

Then I really wanted to work out my arms again. Walking was getting boring. I mustered up the courage in April to call.

July 18th.

I had to take it. I cried again. I tend to cry most in my life when I am frustrated.

I brought Mom with me to this appointment. I never need another pair of ears. I did this day. I was a wreck.

The doctor was wonderful. Kind. Sensitive. Funny. Everything I feared he would not be. I exhaled. He said it was again, not an emergency. But, he saw my issue, understood my discomfort and agreed at my convenience he’d try to fix it. He ordered one test for a sensitive spot under my arm, and asked me to try some physical therapy when I could.

I talked it out with my mom. I talked it out with my husband. After waiting almost a year, I was ready to get it done and stop favoring my dominant arm.

I called to make the appointment for the test. Except it had to be done in the hospital. And it needed insurance pre-authorization. And I tried for one solid week to get in touch with this doctor’s office staff. Three Emails, 2 phone messages and several canceled appointments, I finally got a human.

I got them moving quickly, and they got the insurance authorization immediately. I scheduled the test, and it was fine.

Then I called to schedule the surgery. I was thinking I could still make August. I was wrong.

What about September?

UGHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I took out the calendar once again. We have 4 days off in October… No luck there. No, he doesn’t work December the week I’m off. And in February we have the fundraiser…

Looks like once I calm down I’ll schedule for Spring 2017.

When the time came to have the double mastectomy I opted for the quickest route. I was out of the hospital with reconstruction complete in 28 hours. I wanted this done. I was so incredibly fortunate not to need treatment. I was grateful. More energy to focus where it mattered.

Except once cancer has lived inside of you there is this uneasy feeling that can not be explained. There is this knowledge that somewhere in your body those cells did what they were not supposed to. There is this feeling that you were violated and betrayed by your own body, from the inside out. It damages trust deeply. It’s hard not to trust your body. It can really mess with your mind. So understandably, I was interested in functioning without that thought process. I had become adept at ignoring my scars and “nipple-free” implants.

Until I started to feel them. Every damn day.

This is minor. This can be fixed. And it will be. Just not in a time-table anywhere close to my liking.

I picked up the free weights again today. Really light. In my chair. What’s the worst that happens? Really? If it becomes an emergency they have to move faster.

Otherwise, I’ll balance that full-time job, that beautiful, active 8th grader, and a boatload of afterschool activities. I’ll try to get out of my own head.

But, no matter how vigilant, or how confident… thoughts of the potential renegade cell, lurking like a thief in the night never quite go away.

#beatingcowdens is a full-time job

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!)

“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!”

Justifying Our Existence

Published on July 7, 2016July 7, 2016 by beatingcowdens2 Comments

There was a post that showed up in my news feed this week from http://www.themighty.com. Read The Secrets of People with Chronic Illness here

I can’t seem to shake some of the thoughts from my head.

As I write, school ended for the summer 9 days ago. In those 9 days we have seen 4 doctors between us. There are 9 more SCHEDULED in the month of July, including a biopsy for Meghan on the 22nd.

And, while I did take some time over the weekend to reconnect with some dear friends, and I have accomplished a few mundane tasks like routine car maintenance, the vast majority of every moment of those 9 days has been spent justifying my existence.

Fortunately, I have enrolled Meghan in a theater camp where she is from 10-4, spending some time with kids her age. Of course, the wear and tear on her body, even after only 3 days is evident. She struggles with pain so badly. On her feet, determined to fit in. Determined for me not to say too much. Sometimes I have to let her go. I have to let her try. I have to let her decide. But, it hurts. It hurts her, and it destroys me to watch her battle with her body. I watch her put that game face on in the AM, and not take it off until after swim practice follows camp. No one will ever tell me she is anything but driven. But, no one would ever know to watch her…

Usually by this point in the summer my work bag is unpacked, washed and tucked away. Often my lesson plans for September are mostly framed out. I am yet to take the list I frantically formed as I packed my room the last day of school out of the bag.

Instead, the yellow legal pad sits near my computer. I write, and cross out, and rewrite, as I call, obtain records, set appointments, and clarify tests required by various doctors. I rearrange schedules to allow for coverage for Meghan as I trek to my own appointments at the most inconvenient times.

On the 18th I will meet a new plastic surgeon, as the old one no longer accepts our insurance. I never imagined needing a new plastic surgeon only 4and 1/2 years post op from the mastectomy, but it seems I do. I’ll wait until I meet him to elaborate on that… Sometimes, although not often, I do feel like this…

I can often count on 4 hours minimum round trip for the 10 mile trek. Never mind the cost. We just don’t even add it up. Instead, we thank God for our jobs and the insurance we do have.

I received a phone call yesterday from a lab that was running insurance information to obtain testing for Meghan requested by one of her doctors. Except it’s not covered at all. $16,000 they said. I, who denies my child nothing politely said, “we’ll find another way”. And we will. Because that is just insane.

I’ve sent 3 emails to the office manager of the office doing her procedure on the 22nd. I simply want to know what date to leave free for the follow-up. I know there will be one, and I want to plan a few summer adventures in the time that my fish will have to be out of water. I also asked for the pathology from her December procedure. For about the 8th time. Just keep adding checks and dates to the list.

When things get really bad, like with the bills I’m fighting in collections, they get a folder of their own. The SUPER troubling places, like the mail-order pharmacy, have a notebook.

We do our best to stay upbeat. We count our blessings regularly. We know it could be worse. We know the anguish others suffer far surpasses our daily struggles. But, no matter how much we focus on a positive attitude, and believe me we do, it does not decrease the pain, both physical and emotional. The struggle is real. Whether we like to admit it or not.

I reached out to our genetecist this week. Darling man said he would always help, and didn’t want us to waste a trip on him. I told him I was having trouble with my voice. I’ve been getting very hoarse for 8 weeks or so. No infection. Three allergy meds on board. But, I do have Cowden’s Syndrome, that tumor growing thing I sometimes forget belongs to me too. And I have a history in the neck. A 3.5 pound lipoma in 1988, and multinodular goiter on the thyroid in 1993. Both removed. Both benign. But…

He referred me to a head and neck surgeon. I finally mustered up the courage to block out at least one more day of summer, and call for an appointment. I was met with the inquisition on the phone. I never got past the receptionist.

“This doctor is a head and neck SURGEON.”

“Yes, I know he’s a surgeon, I was referred for consulation.”

“Well, he doesn’t just SEE people, you need a diagnosis and a referring doctor.”

“I have both. C-O-W-D-E-N Syndrome. A mutation on the PTEN gene that causes benign and malignant tumor growth. I was referred by my genetecist, also a doctor at your hospital.”

“Well, what tests do you have? He will want a report, a CD, something…”

Sigh. I just don’t have the fight in me today. “Ok, you win. I’ll find someone else.”

“Come back to him when you have a diagnosis.”

Whatever. Just whatever. Sometimes I get a little tired.

Thats when I shake it off with a quick walk.

I emailed the genetecist back. I’ll wait. Again.

I have this pool in my backyard. And plenty of people I’d like to reconnect with. And some lessons I’d like off my plate. And a book I’d like to read.

I’ll get there. In the mean time, I’ll be at my computer. Emailing. Arguing. Advocating. Communicating. Researching. Justifying my existence, and

#Beatingcowdens with whatever it takes.

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.