The Best You Can…

Published on January 24, 2016January 24, 2016 by beatingcowdens2 Comments

Friday we met a good doctor. A new endocrinologist. He is young. He is friendly. He is smart. He is ready to be a doctor to Meghan. I am grateful.

Friday Mom got her second cataract done and checked before the storm. So necessary for more than visual acuity. It just needed to be done. I am thankful.

I was about to say today was one of those days where you have to focus on your perspective, and it will define your outcome. But, really that’s every day, isn’t it?

We woke up under about 30 inches of snow here in NYC. Now the thing about living in NYC is that you have to learn, as the Marines say, to “Improvise, Adapt, and Overcome.” Because nothing really stops. At least not for long.

Yesterday there were travel bans. Yesterday we were to stay off the roads. Today we are told that the City’s 1 million school children will report to school tomorrow, and with them, their thousands of teachers and support staff will report as well.

In many boroughs this is not such a big deal. Public transportation is at the ready. Moving around is easy.

Not the case here on Staten Island. Almost everyone travels by car.

Yesterday Felix tried to keep on top of the snow. It was fruitless.

Last night an ambulance got stuck in front of my house. My husband and a neighbor dug them back to a main road. We said a prayer for the person they were headed to, and continued on our night.

This morning, we woke early got the shovels and the snowblower. He started at one end, and I at the other. But in the front of the house I was met by my neighbors. We groaned a bit, and pleasant conversation ensued as we gave each other a hand.

At one point the conversation turned to Meghan’s footwear. Somehow. And as I explained that she has 2 different sized feet, and we buy 2 different shoes and toss the opposites, she seemed stunned. And I said soon after we toss the opposites we sit for a moment in gratitude for 2 working feet, and a financial situation that allows us to pay our credit card bills. She smiled. She gets it. She’s had life struggles of her own.

We got the cars free. We set ourselves up to hope for the best for tomorrow.

Then Felix headed with Ken to shovel out my grandparents.

Grandma, when memory came easier to her, used to sing, ” Count your many blessings, count them one by one…”

Grandma is 95 and Pop is 96. Life is more challenging for them than it ever was before. Yet there are so many blessings. They have neighbors that help clear pathways when we can’t get to them. They have a tenant who is a friend, who looks in on them and keeps us posted. They are really special, and we are grateful for the kindness of those they interface with daily.

When he got home, my husband stole a quick meal and headed out to make an igloo and a snowman with Meghan, after a romp in the snow with the dogs. He is a good husband, and a good Dad. A really good man.

Some time this afternoon my phone rang. It was an internet friend looking for some reassurance. I think I was able to give it. Keep your heart and mind focused. Stay physically, mentally, and spiritually healthy. Do the best you can with what you have, where you are. Always.

Tomorrow Meghan will see the knee surgeon. Time to follow-up on a less than stellar MRI/MRA experience the week before last. Time to check on the status of the AVM. Holding my breath that it’s behaving. Tomorrow I will hope all the main roads from here to NYC are plowed well, and I will gratefully pay to park in an overpriced lot. Perspective.

We are actively engaged in “Jeans for Rare Genes 2,” working on everything from ticket sales to journal ads to raffles. My Meghan is ready to channel this week’s pain into a focused goal. Meghan wants the PTEN foundation to have the money they need to create a patient database. Vision.

Every day we are given a choice. Many choices. Life is not all peaches and cream. Not for any of us. Some days I struggle. Most days I know which side of the bus the sit on.

Here’s to hoping for an easy safe parking spot at work tomorrow, a mind eased from the worry of loved ones, and a smooth trip to NYC.

Local Newspaper Coverage

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

This is already all over for my local friends, but for anyone else who is interested, this article was written for our local newspaper. It will publish in print Monday, but is in the online paper today. Click the link below.

http://blog.silive.com/gracelyns_chronicles/2016/01/post_23.html#incart_river_mobile_home

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!

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.

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

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

The Story of the Girl and Her Mom

Published on October 18, 2015 by beatingcowdens5 Comments

So, four years ago they diagnosed this girl with a rare genetic disorder called “Cowden’s Syndrome.” Soon after they diagnosed her, they diagnosed her mom too.

And the mom and the girl read everything they could find, which really wasn’t very much.

And they asked a lot of questions. Some from the doctors, but mostly from people on the internet who had this Rare Disease too.

They learned a lot. They also learned there was a lot to learn.

They learned about cancer risks, and how very high they are.

They learned about screening tests.

They met lots of new doctors. Some were super awesome, and others were super awful.

They fired the awful ones, and kept the awesome ones.

The doctors sent them for tests, and screenings, and blood draws, and all sorts of poking and prodding.

At the beginning it was pretty much all they had time for.

The girl had lots of surgeries, and lost her thyroid, and then they called her a “previvor” because they said she got it out just in time before it was cancer.

The mom, she had a bunch of surgeries too. In one they found cancer. But she was called a “survivor” because it was all gone. (Thanks to the girl who got diagnosed first and saved her life.)

The girl and her mom ran from doctor to doctor. They sat in traffic for forever. They stayed in hospitals and had surgeries, and tests. Everyone treated them kind of strange. Like they were aliens or something. Their condition was so rare that hardly any doctors even understood what they were supposed to do.

Over time the girl and her mom got a better idea of what really mattered and what didn’t. They started to be more assertive about doctors, and schedules and planning. They started to say, “not right now,” sometimes, knowing that a few weeks wouldn’t matter, but a few months might.

The girl and her mom talked a lot about Cowden’s Syndrome. They talked a lot about Rare Diseases. Sometimes they were really angry. Sometimes they were sad, and other times they were grateful. They saw what some other people with Rare Diseases went through.

The girl and her mom had LOTS of long talks, real talks about tumors, and tests, and cancer, and life.

They worked on some things separately and some things together. But they agreed to get busy living.

That didn’t mean they could ignore the seemingly endless doctors appointments. They all had to be done. It meant they could schedule smarter. It meant they would talk about what symptoms had to be addressed right now and which ones could wait. It meant they had to get really good at communicating.

This isn’t always so easy since the girl is almost a teenager, but they are getting pretty good at it.

The girl had 4 surgeries this year, some more major than others, but she spent lots of time recovering. And she learned that she liked to be busy. She likes to sleep too, but she likes to be busy. With kids. Often. She also likes to be active. A lot.

The girl and her mom still have this Cowden’s Syndrome, and sometimes for reasons no one understands, they hurt a lot. Sometimes the pain makes it hard for one of them to push on. Sometimes the tired almost feels like they can’t go on.

But the girl and her mom, they push each other. They push each other to press on because laying down and giving up is not an option.

Their days are long. The mom works full-time. The girl goes to 7th grade and makes high honor roll.

Their afternoons are full of drama club, the girl’s love of theatre, and lots of swim practice. The days are often 13 hours or more of constant motion.

The girl and her mom, they decided that they might have a Rare Disease, but it definitely wasn’t going to “have” them.

So they decided that whatever comes their way, they are going to be active, healthy, strong, fueled with nutritious food, and built of muscle. This way if Cowden’s punches, they will punch back harder.

Sometimes the mom wonders if life would have been different without the girl. The mom wonders if alone she would have been able to push on.

But she doesn’t have to wonder. Because they have each other. And, because this weekend they spent 3 days at a swim meet. And the girl knocked major time off her events.

And, when they came home, the daddy, who is the glue that holds them together, had warm chicken, and rice and vegetables, the healthy fuel – all ready.

And the mom and the girl were so grateful. For each other. For the desire to fight. For the strength from good food, and faith, and the love of a dad who backs them up every step of the way.

And as the mom drove the girl to youth group at their church, they talked, about the swimming. And about the fundraiser they are planning. So that Rare Diseases scarier than theirs get some attention. “For the Babies,” and so that there can be research for this Cowden’s Syndrome. So that maybe it can get stopped in its tracks.

And as the mom walked home enjoying the fresh crisp air of Fall she was filled with gratitude.

For this story of BEATINGCOWDENS has only just begun. And each chapter holds more promise than the next…

Recovery – Everything is Relative

Published on October 12, 2015October 12, 2015 by beatingcowdens1 Comment

recovery

(Merriam – Webster)

Medical Definition of RECOVERY

: the act of regaining or returning toward a normal or healthy state

Recovery. Is it a place? A state of being? A state of mind? Who knows? But, we spend a lot of time here. It’s really sort of a family affair, although without a doubt the one who takes the brunt of it is always Meghan. Four times in the last 10.5 months, and most recently three times in the last 6 months, there has been general anesthesia, and necessary recovery. That is a record for her that I pray she never surpasses.

In November and May it was the knee – one emergency, one planned. In between it was the hand. A pesky, tiny AVM, gotten before it got to be too big of a deal. She JUST was cleared to take a break from the recovery PT on Thursday. And on Friday it was the wisdom teeth.

We laughed a lot before the teeth came out. We called her an overachiever and kept the mood light reminding her that years from now she would be able to boast being the first, when her friends inevitably would need theirs done too. This surgery had a glimmer of “normal” attached to it – although distinctly unique in her age.

But, being unique isn’t always a place you want to be. Especially at 12. Sometimes you just want to blend in a little.

It’s less than ideal to have a weak knee with a persistent AVM. It’s no fun at all to grow AVMs – even tiny ones – in the palms of your hands. (One in EACH hand to be fair.) It doesn’t make for good conversation, when your experiences are operating rooms, and your excitement comes from which doctor hurts less when they put the needle in. Which 12-year-old would really know how to respond? It’s certainly not the place you want to be as the FIRST wisdom tooth survivor of all your friends, when none have seen their own swollen puffy cheeks, or have any idea the pain as the incisions begin to heal and the stitches work their way through.

And I knew the prcedure even surprised the surgeon. When I went to her as she woke up, the medication plan had changed. Initially she was to recover on Tylenol. I was handed a script for a narcotic pain reliever and instructed to be sure she used it. It’s never dull. Or easy.

It’s no solace to her that I understand THAT surgery. Because I had it AGES ago, and I don’t remember too much except pain. And, I won’t be in school with her tomorrow to give her Tylenol, or reassuring glances, or soft food.

Recovery, when she was little included furry stuffed animals, and lots of rest time. It included balloons, and all sorts of pomp and circumstance.

Recovery, now is more about the sporadic texts and occasional pop-overs while she tries to maintain her school work.

Recovery now includes the realization that it’s very definition of “returning toward a normal or healthy state,” could prove to be elusive, indefinitely.

We do a lot of talking. We all know how fortunate we are. We all understand how much worse all this could be. We have depth of knowledge of those around us who suffer. We think. We pray. We miss our friends.

Recovery, on this beautiful holiday weekend, involved trading walks in the fall air, for open windows. It involved being nearby all night, because I was allowed. Recovery means family time. And maybe that’s one of the things that keeps us sane.

Perhaps “recovery” has become a routine venture. And THAT in and of itself could lead to a whole lot of other conversations.

Tomorrow it’s back to business. The plan is to swim by Thursday. After all, there is a meet this weekend.

Our goals in this house far exceed recovery. That’s way too repetitive.

We like a challenge. We are BEATINGCOWDENS!

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.

Hyper-vigilance

Published on September 20, 2015 by beatingcowdensLeave a comment

Hyper-vigilance. Although Wikipedia is not my favorite source for all things – it defines this quite well.

Hyper-vigilance is an enhanced state of sensory sensitivity accompanied by an exaggerated intensity of behaviors whose purpose is to detect threats. Hyper-vigilance is also accompanied by a state of increased anxiety which can cause exhaustion.

When we were first diagnosed, and I had a long conversation with a Mom who had been where I was many years before, she told me we would be OK, but we would need to be forever vigilant. Understanding now, what I didn’t then, is that Cowden’s Syndrome requires more than vigilance, it necessitates hyper-vigilance.

The two are very different. One is a state you may be in sometimes, when it is necessary. The other is a place you never leave. Ever.

I don’t compare illnesses, in the sense of one being, “better, harder, easier, more difficult, more painful…” than another. That to me is silly. I know LOTS of people who suffer on a regular basis. I can’t say I would want to trade places with any of them. And, I can only speak from my lens.

My lens is that of a mother, who is watching her child battle through a chronic (FOREVER) illness with potentially life-threatening, and definitely life-altering ramifications – while battling that same illness myself.

I don’t view us as “sick” people. As a matter of fact we are regularly called,” The healthiest looking sick people…” But, we aren’t “well” either. It gets complicated. Quickly, and often.

Hyper-vigilance requires me to do everything I perceive is in my power to try to stave off the tumors and vascular anomalies looking to create havoc, chaos and confusion in our bodies.

Hyper-vigilance necessitates monitoring food intake. Avoiding food allergens/sensitivities because they cause vomiting and severe GI distress. That means NEVER leaving the house without food. JUST IN CASE. It also means spending weekends cooking so that “quick meals” come out of my freezer and not a drive through window. It means providing the most intense nutritional products I can find to fuel a body that would otherwise be running on empty. It means driving far and long to get the right food at the right stores. It means making sure the sweet treats that are allowed are not full of dyes and preservatives because they compromise further a documented severely compromised immune system.

Hyper-vigilance means watching the medication intake. To make sure we don’t forget an antiviral. Because when we do it sets off a tirade of events that are hard to bounce back from. It means typing the list, and checking it over. It means teaching her to know her medicine on sight. It means avoiding everything we don’t need and willingly taking things like probiotics to help that fragile stomach. It means knowing that when you have chronic viral infections they are ALWAYS waiting for an “in.” It means leaving NOTHING to chance, and having spare pill cases in every bag with extra of everything, especially digestive enzymes. It also means spending HOURS AND HOURS trying to make the mail order medication people get it right. Which I sometimes think is just not ever going to happen.

Hyper-vigilance means scheduling the doctors. All of them. All the time. It means making sure all the screenings, for all the ridiculous number of cancers we are at an increased risk of developing, are done on schedule. It means often following up on those appointments, with imaging studies and more appointments. And then repeating those “unclear” imaging studies, again and again. It means getting blood work done, often. Usually at least once every 4 weeks. It means talking to the endocrinologist and problem solving with him when he admits “it doesn’t make sense” as you strive to help your girl at least feel better. It involves medication adjustments. Making sure it’s taken on an empty stomach, and every single day. It means there is always a list nearby of who needs to be scheduled next. It’s right alongside the pile of bills that have inevitably been messed up by someone, and now need receipts faxed and hours on the phone to be kept out of collection agencies.

Hyper-vigilance is hearing the symptoms every day and trying not to panic. When there is a headache, sharp and sudden, or a pain in the knee, or the back, or the shoulder, or the leg, and you know your kid is NOT a hypochondriac as some others would like to think, you have to listen, sort, and mentally file all of these. Hyper-vigilance is keeping track of which ones repeat and which ones go away on their own. Hyper-vigilance is being very aware, but never panicking. It’s a fine line.

Hyper-vigilance is Physical Therapy. As often as we can fit it in. Because something always hurts. When one foot is 2 sizes smaller than the other because the treatments for the AVM in the knee cut the blood flow to the foot, so the bone stopped growing, you end up “off sides”. The hip, the shoulder, the knee. They all hurt, and it won’t get better. It will only get managed. For as long as we can fit in the PT.

Hyper-vigilance is also finding balance. It’s also searching somewhere for “normal.” It’s making 4 swim practices a week, often on raw nerve. Because she wants to feel normal. She wants to compete. And let’s be truthful, she wants to win. It’s about me never really leaving the grounds of the college 12 extra hours a week because we are always one step away, and sometimes a half-step from “just in case,” and “what if.” It’s getting her to drama, because she’s skilled there. And she fits in. And the teacher is awesome, and the kids know her for who she is. It’s about balancing the schoolwork, and doing her best, while teaching her not to beat herself up. Too much stress is no good for anyone. Especially when you have this random tumor growing condition that preys on extra stress.

Hyper-vigilance is remembering I have this “Cowden’s Syndrome” too. It is making sure I am at my best so that she is at hers. It’s remembering that I sport fake silicone boobs as a constant reminder that I’m not invincible and cancer found me. It’s remembering they were worried enough to take the uterus and the ovaries too. It is working hard, at my job, and my life, and showing her it can be done. But it’s also about letting her know I get tired too. Because in those moments she sees that she is normal. And yesterday when I struggled to even walk up a flight of stairs, I saw the concern in her eyes. And she picked up the vacuum. And she helped. It’s teaching her to take care of herself by some days letting her take care of me.

Hyper-vigilance is walking. Me. Walking 4-5 miles a day almost every day. Because my bones are already crapping out. After 30 years on thyroid pills and 3 years after a hysterectomy, at 41 I’ve been placed on warning. It’s necessary for me to take good care of me. To fuel my body properly. To limit the junk in. To respect this body because it’s already got a lot going against it.

Hyper-vigilance is making decisions in the moment. It is having to say no, we can’t go. It’s not being able to tell people in advance. It takes away from advance planning, even the fun stuff. Because life with chronic illness is day by day. It makes me feel badly, often. So sometimes I avoid making plans. I don’t even like to volunteer for too much because I just don’t know whether things will be ok that morning.

Hyper-vigilance can be very isolating.

It’s hard for some people to understand. And I get it. Because a few years ago it might have been hard for me to understand too. It makes people uncomfortable that this thing we have is never going to get better. People feel better when things can be fixed. But it can’t. We are not going to grow out of it. It’s here. It’s part of us. Like the ‘elephant in the room.’ But, we understand other people’s problems too. We get the myriad of health issues that surround us. And we empathize. And we don’t need to be sheltered from them. As a matter of fact, we might like it is sometimes people shared their worries with us too.

Hyper-vigilance is exhausting. And today I took a two-hour nap. Because my throat started to hurt. And my body was giving me all the warning signs that I had pushed a little too far. I shortened the walk. I stayed in mostly.

It’s like training. For real life. Because there is not an event at the end, that will finish with a medal and a sense of accomplishment, and a new goal. My forever goal will be to keep us healthy, and to keep the Cowden’s Syndrome at bay. The only path to this end is hypervigilance. And even then, just like in life, there are no guarantees.