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!

The Patient or The Person?

Published on December 13, 2015 by beatingcowdensLeave a comment

I am sure I am not the only one, especially the only parent, who struggles daily with wondering if I have made the best choices for my daughter.

Sometimes we argue, and bicker, and I find myself wondering if I am reaching her. Other times I look at all her activities and wonder if she is too busy. Still other times, I look at her and I see those tired eyes, and I wonder what I can do to make things better.

Choices. Life is about choices. And around 12 years old is that transitional time where more and more of the choices become hers, not mine. I can guide, and support, but she is beginning to make more of her own choices, and handle their consequences, be they positive, or not.

She is doing a great job, and truly despite a few hiccups, I could not be more proud. But I will always worry.

The one area though, where the decisions are mine and her father’s to make, are the complex medical decisions. And with Meghan there are many. I have to wrestle with my roles, advocating for her best interests physically, mentally, and emotionally.

This has been a growing process for me, and there has been such a learning curve. With Meghan there is always a medical decision, always a worry, always something that has to be checked out and looked at. Many of these things have potentially serious consequences. But, she is not a medical specimen, with a fascinating genetic disorder. She is a child, a young lady, with hopes, dreams, goals, and emotions. Finding the balance between who she is and what she needs is tenuous.

Sometimes I get it wrong.

This time, I got it right.

The doctors are worried. She needs a biopsy. But, it’s not her first biopsy, and it won’t be her last. There is reason for concern, and we take that concern very seriously. The biopsy was to take place on the 9th of December, the first available. It would keep her from swimming for about 10 days.

She looked at me. I knew in my gut what to do.

No, you’ll have to book her for the 16th. (Even knowing the extra week of waiting would be agonizing for me.)

The doctor looked puzzled. But…

Listen, she has her drama concert on the 10th, and her swim meet on the 12th and 13th. She’s primed and ready to qualify for a championship meet. One week is not going to change that biopsy. You and I both know, it is already whatever it is.

She looked at me. She looked at Meghan.

My eyes locked with my girl. In those eyes she thanked me for putting her the person, before her the patient.

Thursday there was this…

Saturday, there was this…

And before the meet was over she had personal best times in 4 out of 5 events, and 2 qualifying times for Silver Championships.

We have no idea what Wednesday and the ensuing week waiting for pathology will bring.

But, there is a peace in knowing the person is always more important than the patient.

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!

(Breaking the) Code of Silence

Published on November 22, 2015 by beatingcowdens4 Comments

The song by Billy Joel…

“Code Of Silence”

Everybody’s got a million questions
Everybody wants to know the score
What you went through
It’s something you
Should be over now

Everybody wants to hear the secrets
That you never told a soul before
And it’s not that strange
Because it wouldn’t change
what happened anyhow…

…And you can’t talk about it
Because you’re following a code of silence
You’re never gonna to lose the anger
You just deal with it a different way

And you can’t talk about it
And isn’t that a kind of madness
To be living by a code of silence
When you’ve really got a lot to say…

And as happens sometimes when there is a lot on my mind and I’m left alone with my thoughts, music creeps in. Today Felix and Meghan are on a youth retreat with our church youth group. They are spending the weekend. I cleaned a bunch, switched to the winter drapes and started to transtition into holiday mode. It’s been a few tough Decembers. After losing my Dad in December of 2013 and then in the fall of 2014 saying goodbye to Grandma Gen, Uncle Jerry, and our beloved Allie dog, I was intent on getting some time to get my heart and soul peaceful for Christmas. But, despite my best efforts and lots of early shopping complete, my heart is heavy with worry once again.

I know people will say you can’t worry and have faith. If that’s true then my faith needs some work. But, I think its my faith that keeps a leash on worry and keeps it far away from depsair. And for that I am grateful, although things are getting a little tricky here again.

I began this blog years ago with no expectation of personal privacy. I have been gratified by contacts made all over the globe, and have enjoyed having the ability to nudge people towards support or just read that our story gives them hope. But, then I began to write about my daughter. And we had tons of conversations about digital footprints, and things we can’t take back. She has been like a champion, willing to share her story through me in the name of education, advocacy and awareness. She wants a place where people can read about REAL people REALLY dealing with Cowden’s Syndrome every day.

Yet, in her day to day life Meghan is a bit reserved. She is careful with her words, and trusts sparingly. She is constantly aware of the different lens through which she views life, in light of her medical experiences. She is acutely sensitive to the fact that even the children who care, are unsure how or what to do if she talks about her real life. PLUS, so much of what goes on is hard for us to process. There is just no way to expect a typical 7th grader to go there. Heck, I can’t get the adults I confide in to wrap their heads around any of this.

November was supposed to just be me. Traveling to the plastic surgeon to determine if my right implant ripped, and scheduling surgery if needed. I go there Tuesday.

But, November has already been very busy. We met earlier this month with a new doctor, an adolescent gynecologist at NYU. She listened to Meghan’s story. A story that began with what we hoped was just an erratic start to a teenage menstrual cycle. She reviewed the ultrasound from July with the “abnormal endometrial thickening,” and she asked some questions to my girl. Who at 12 is clearly adult size, just shy of 5 foot 7 and a very trim 115 pounds. My girl had her notebook and answers.

Then there were more questions. Because since the middle of August there have been less than 10 days with NO bleeding. So there were blood tests to check hormone levels. And there was a repeat sonogram scheduled.

There was also conversation with this very young, very attentive doctor. A doctor who made no bones about researching Cowden’s Syndrome and telling both of us that she found 2 cases in the literature of Cowden’s patients with uterine cancer – mean age 13.5. Ouch. She told Meghan that she had some investigating to do. And then we would know more. We already had this information stored so the minds race.

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Cowden Syndrome

Approved by the Cancer.Net Editorial Board, 11/2014

What is Cowden syndrome?

Cowden syndrome (CS) is part of the PTEN hamartoma tumor syndrome. Hamartomas are benign, meaning noncancerous, tumor-like growths. Other clinical syndromes that are part of the PTEN hamartoma tumor syndrome are Bannayan-Riley-Ruvalcaba syndrome (BRR; diagnosed in children), Proteus syndrome, and Proteus-like syndrome. CS is characterized by a high risk of both benign and cancerous tumors of the breast, thyroid, endometrium (uterus), colorectal, kidney, and skin (melanoma).

*********************************************************

The ride home involved some of the toughest questions I’ve ever had to answer.

And then the hormone levels came back utterly confusing. The doctor said they make no sense. It didn’t gel with the tickened lining and the bleeding. It didn’t gel with anything.

And the ultrasound Thursday at 4 pm was read by Friday. Warp speed for you experienced parents. The doctor called me at 7 Friday night. The conversation led us to the necessity of a biopsy. Too many things aren’t right. “There is no formula, no plan to proceed in a child this young. We just have to trust our instincts.” I like her. She cares. But again, I’ve been doing Cowden’s longer. I have to be alert.

Welome to my world doctor.

We’ve heard this song before. “Could be…” “Maybe…” “We’re concerned…” and it’s been fine every single time.

It’s just the weather is getting colder, and after school trips to Manhattan hold no appeal. Missing work, making it up, racing to the swim practices she loves. We’ve done this all before. Different reasons. But there seems to be very little real break in between. And the pace is hastening.

This week is Thanksgiving. We’ll put the tree up. We’ll work on some cards, and I’ll help Meghan organize a few more things for the Jeans for Rare Genes Fundraiser.

Monday I should hear about a date for the biopsy. Hopefully. Then there will be at least 5 days after that date for pathology.

And the “Code of Silence” permeates a few other non Cowden’s areas of life.

This young lady I have is strong. She is funny. She is tenacious. She is a swimmer. She is an actress. She loves to sing. She is NOT Cowden’s Syndrome. But IT is trying to play dirty with her again. And I just don’t like it one bit.

We remain BEATINGCOWDENS!

(This blog, like all other ones of a personal nature, was approved by Meghan.)

AND WHILE MEGHAN CONTINUES TO DESIRE THE REAL STORY BE TOLD, PLEASE FAMILY AND FRIENDS, RESPECT HER “CODE OF SILENCE.” SHE WILL TALK IF SHE WANTS TO.

IF YOU ARE ABLE, WE WOULD LOVE TO HAVE YOU JOIN US AT THE 2ND ANNUAL “JEANS FOR RARE GENES” FUNDRAISER. A BRIANCHILD OF MEGHAN ALL PROCEEDS BENEFIT THE PTEN FOUNDATION AND THE GLOBAL GENES PROJECT. JUST CLICK THE LINK BELOW.

https://www.eventbrite.com/e/jeans-for-rare-genes-2-tickets-19343557100?aff=eac2

A Lesson in Brave

Published on November 15, 2015 by beatingcowdensLeave a comment

To My Girl,

This week we wait. Again. We wait to see how nasty Cowden’s wants to play, and in what ways you’ll need to show it who is the boss. Again.

You have every right to be frustrated. To be mad. To be fearful. You could be negative, and self-absorbed.

But instead you’ve chosen to be brave.

And I have no words to express how proud you continue to make me every day.

You are strong. You are brave. You are focused. You are successful.

I have learned so much from you, and I continue to learn.

Whatever this week brings, we will handle it. Together. Cause there is NOTHING in this world capable of stopping you.

Just remember if you need a hug, a shoulder, or an ear – I’ve got all three.

Love you my girl,

Mom

“BE the Change You Wish to See in the World” – Ghandi

Published on November 1, 2015November 1, 2015 by beatingcowdens1 Comment

With another fall season upon us, life is in full blown crazy mode. And, to be honest, we wouldn’t have it any other way.

Yesterday, my 12 year old FINALLY throughly enjoyed a Halloween. It was such a thrill to watch. FINALLY, she was able to trick or treat, EAT a few treats, AND keep up with some serious walking with friends.

Of course, she slept until almost 1 pm, even with the time change, and woke up unable to move her AVM knee. These are the repurcussions we expect. She is not “normal,” but when she can pretend for a while when it really counts… well that is a great success. And even as she lay still most of the day, she smiled. She sang. Joy.

Fall is full of things, and so far she’s managing nicely. With a marking period to end Friday, Pupil Path tells me grades are at an all time high. Practice 4 times a week has her swim times at an all time low. And, drama twice a week is leaving hopeful anticipation as “The Wizard of Oz” is soon to be cast.

She is working with me to plan our second fund raiser in February. We chose a date close to World Rare Disease Day, with the continued desire, and intention to bring awareness to our rare disease, and over 7,000 rare diseases worldwide that affect 10% of the world’s population. We are acutely aware that to be heard, we need to join collective voices. Individually we matter little to most of the healthcare system, overwhelmed, uneqipped to diagnose and treat us. Together is the only way we have a chance.

Last year we raised over $12,000 and donated it to the PTEN Foundation (www.PTENfoundation.org) and the Global Genes Project (www.GlobalGenes.org). This year we hope to exceed $20,000 in donations.

We have brought in Bob Jackson, a performer from Walt Disney World. He will be flying up to entertain our guests. Our whole family LOVES Bob, but Meghan especially will not hear of celebrating a birthday until Bob sings to her. We’ve spent her last 8 birthdays at Disney.

Here is a youtube video that is a great indicator of the FUN time Bob brings!

We have lined up sound with Partners in Sound, and we have Balloon Charlie returning to also help entertain the children.

We have established a children’s menu in hopes that families can enjoy the afternoon out together.

There will be raffles and lots of laughing.

There will be comfortable JEANS and good friends.

We are setting up a facebook group called Jeans for Rare Genes 2016 Staten Island, and we encourage you to join.

We have tickets to the event available through Jeans For Rare Genes 2 – Tickets and Donations link

Meghan is living life as a 12 year old who just happens to have had 15 surgeries. She is a 12 year old who just happens to have a Rare Disease. She is a 12 year old who realizes that as challenging as life is, so many others suffer worse. She is my hero. She is MY role model.

Together we will make Jeans for Rare Genes a thrilling success. Hope to see you there!

Time with “BOB” our favorite entertainer…

Do What You Love

Published on September 29, 2015September 29, 2015 by beatingcowdens1 Comment

It was almost 8:40 last night as I drove down Grymes Hill with Meghan. She hadn’t been home since we left for school at 7:20 that morning. She was facing a shower, dinner, homework, and a later than normal bedtime. She had spent the afternoon registering for her after school drama program, and had spent the last two and a quarter hours in some combination of intense exercise- on land and in the water. She was exhausted and it was evident in her face. But, not it her voice or her mannerisms.

“I know I’ve got you running all over the place Mom, and I know it’s a lot of hours. But, I have to tell you that I LOVE it.”

I couldn’t help but smile in spite of myself. We all want for our children to do what they love. And here she was; registered for drama, swimming 4 days a week, pushing the herself at school, enjoying church youth group, and planning a fundraiser for February.

She feels rotten. A lot. But she pushes. And I have to believe that is how we have to live this syndrome – this life. Maybe I’m a good influence after all.

She plays in pain. Constantly.

She is always recovering from or anticipating something. But instead of waiting for the storm to pass…

She’s clearly dancing in the rain.

We have our spats. We’re supposed to. But, we balance each other too.

We keep each other motivated. We keep each other grounded. Her diagnosis still makes me physically ill. But, it does not, can not, and will not define her. I’m convinced.
Do what you love I tell her. Do what makes you happy. And she does.

And I do too. Watching her for hours, on the bench, in the basement by the pool makes me happy. Watching her on stage makes me happy. Watching her persevere makes me proud.

We will do this- together. We are BEATINGCOWDENS.

Anticipation…

Published on August 24, 2015 by beatingcowdensLeave a comment

Funny how things creep into the mind. Then there was this Heinz commercial from the 70s.

Anticipation – is making me wait…

Tomorrow we do it again. Surgery 13. Vascular malformation, left palm.

Hopefully it has kept a safe distance from the artery.

Hopefully it is smooth and easy.

But, we worry. And it’s normal. Just because you’re USED to something, doesn’t make it OK.

Anticipation…

We will rest, although I don’t expect much sleep.

“There’s nothing wrong with THAT girl…”

Published on August 9, 2015 by beatingcowdens1 Comment

To the Young Couple on the Bus this Morning,

You should know that I heard you. I heard what you said as you glared at my daughter. I saw you shake your heads in disgust and say, “There’s nothing wrong with that girl, I saw her walking at the hotel last night.” You seemed proud of yourselves, like you had “found us out.” Maybe that’s why you weren’t so quiet. Maybe you wanted the others to hear, and to look at us in disgust as well, while the bus took 4 extra minutes to load my daughter on the wheelchair ramp.

I thought about what you said on and off through the day, and that alone made me mad. The fact that I even gave you a second thought was so much more than you deserved.

Then we caught the same bus home, and I really struggled to hold my tongue as you went at it again.

But, on the way home, I was less interested in you, and much more concerned for my daughter. She wasn’t well, again. And in some ways we are used to it, but it’s never any easier to see. As magical as it is here, it doesn’t change our reality.

Our reality, the reality of daily struggle with an invisible illness, is with us all the time. And even though my daughter CAN walk, she is not physically capable of the walking required to navigate the parks. Maybe its the 6 knee surgeries. Maybe its the after effects of the thyroidectomy. Maybe its the low immune subclasses, or the severe GI issues. She tires easily. And today, because it’s day three, she is already worn out. And even with the help of a wheelchair, she needed us to cancel our dinner reservation and get her back to the hotel to rest.

So, yes. At the advice of her doctors, and the agreement of her parents, because she NEEDS a break from her life, and EVERY protection to help her feel well, she uses a wheelchair through most of the day. And every day before we leave the hotel room we say a prayer for all those who HAVE to be in a wheelchair all the time. We take a moment to pray for their strength and health.

You aren’t the only ones. There are plenty of others who look at my beautiful girl, and think that this is some type of ploy. Which would make us pretty sick people. Because if you really want to feel queasy, push your child around in a wheelchair. Go ahead. Try it for a week. We’d rather she walk. She’d rather walk. So sometimes we let her try. With advil, and about 3/4 mile round trip. There is ice for the knee, and a shoulder to rub. The body behaves like one 40 years older. But, she pushes. To keep her independence. To feel normal.

The next time you wait the extra 4 minutes for the bus to load, don’t judge. Don’t figure you know the who, or what or why, about the person in that wheelchair. Don’t pity them. Don’t feel badly for them. Just be respectful, and assume they fight a battle you know nothing about.