Speechless

Published on October 30, 2016 by beatingcowdens2 Comments

Resting your voice is not like resting your knee, or your shoulder. Resting your voice is more like resting your heart, or your lungs.

Something is kicking my butt. And I’m not sure what it is, but I am so not in the mood anymore.

This has been one chaotic stretch.

FInally recovered, mostly from my way too soon implant exchange in August, and my broken toe 2 weeks after, I am battling with trouble in a place I least expected to find it.

This summer I heard, “vocal cord nodules” for the first time, after feeling somewhat hoarse since April. I was quickly reassured by tons of people that these are “normal” and would resolve if I was careful. The doctor didn’t say too much, besides directing me to begin vocal therapy and return in three months.

I knew enough to listen when I was told to start therapy, and I did. Begrudgingly, and convinced it was bogus, I made my way to the recommended therapist. We got in a few visits before school, and then had to switch to weekly as my schedule just wouldn’t allow more.

For about four sessions I felt utterly ridiculous. Then I started to “get it.”

I struggled when I started work, and was told to purchase a “tour guide” microphone. I did, and the small 20 amp speaker with its wireless microphone have been an incredible help. Despite looking like a frustrated pop singer, I am able to talk longer, and with less strain. I am learning to speak differently, and in ways that are often unnatural to me, all with the desired end result being to reduce the stress, impact, and inflammation on my vocal cords.

I saw the doctor for a follow-up on October 11, and I got a very “Cowden’s-like” mixed report. I was told that the vocal therapy had decreased the inflammation. (YAY!) However, the reduction of inflammation makes me a better surgical candidate. (I had really hoped I could just make it go away.) AND, there was now a new, or newly visible “striking zone lesion” on the other side. Both of the lesions were not “typical,” and would not resolve alone. Both lesions appeared to have vascularity to them. And, the “striking zone lesion” was irregular in shape.

Despite his 99% comfort that the lesions were benign, I left with instructions to continue therapy, and to plan on having surgery close to the summer to remove the lesions. I was told for the first time ever, that I would need to practice COMPLETE VOCAL REST for 7 days post operatively, AND for the next 7 days, I would speak approximately 1 minute for every hour. The next several weeks would entail a slow progression back to my full voice use. The thought of it completely freaked me out.

At voice therapy, there were conversations about Cowden’s Syndrome, and our tendency towards over-scarring. The very real possibilities of what excessive scarring would do were discussed in a casual conversation. By this time I am comfortable, and confident in the therapist. She is smart, witty, and honest. She’s real without being painful. She also cares – about me, as a human, a teacher, a mom and a wife.

So, I had really hard conversations with my husband about the future, and I strengthened my resolve. I charged my microphone, and I found the voice that exists out of my throat. I have started to shorten my sentences. I’m learning.

About 3 weeks ago it started to get worse. Slowly and steadily worse. Every day I would do my exercises, and I just couldn’t get the sounds. My air was becoming a battle. The inhaler became a part of many days. I slept as much as I could. I stayed hydrated and took extra vitamin C. I ran no fever, but my chest felt full. My head was pounding.

I stopped using the phone for anything but texting. That was NOT the turn of events I needed, as I was struggling to keep up with people anyway.

Finally, I went to the urgi-center. I was told I had “a lot of fluid” in my head. I changed the allergy medicine. I took a nasal spray. I got a short course of antibiotics because it was lingering, even though I had no fever. I upped the saline, and the steam.

I barely, and I do mean barely, got through the day Friday.

Saturday I sat at therapy, so frustrated. She was so patient. So wonderful. She told me she had been researching Cowden’s Syndrome, and there wasn’t a lot out there on its connection to the vocal cords. We had kind of established that even if the Cowden’s didn’t cause the lesions, we still have to proceed knowing my body has Cowden’s and it affects everything. We can NOT scar the vocal cords.

She had looked at my exams from July and October. Side by side. Frame by frame. And very clearly stating, “I’m not a doctor, but…” I hung on every word. I processed them with respect. Some of our best help through the years has come with the premise of “I’m not a doctor, but…”

Vocal rest. That’s where we’re at right now. I am supposed to rest my voice when I am not teaching.

This is NOT an easy task. I’ve been at it for 4 hours now and I may lose my mind.

This is isolation at its worst.

The lesions won’t heal themselves. I can just get ready for when I need to heal. I can prepare for a lifetime of speaking in a way that babies my voice. I can practice being silent when it is so much the antithesis of my nature.

This time beating cowdens will require patience, strength of mind, and stamina.

It’s messing with me. But I’ve got this. I’ve got this.

If you don’t hear from me… try my email. Or texting. My typing skills will be improving greatly….

#beatingcowdens

The Fine Line…

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

** Finding the balance has been a real struggle of late. This has been in my drafts for 10 days…**

I’m writing from the floor in the hallway of the college gym. Meghan’s swim team practices below. For hours. One day I will be able to drop her off and get a few things done. But, not yet. Not now.

I sit in the hall, out of view of my girl underneath. Out of view of her coaches who undoubtedly must think me paranoid. There isn’t another parent here. These are the big kids- 8th through 12th grade. And I’m not here because I don’t trust her. Quite the opposite. I sit here for the unpredictable. For the moments that take us from 0 to 180 in the blink of an eye. And even as I recognize that emergencies happen to anyone. At any time. I am here. Because history, track record, can not be erased or forgotten. I will pull away, slowly.

In the mean time I FINALLY got all my classes together, up and running, and pretty organized. Formative assessment is in place. Lessons are polished up, and I can take the 50 minutes each week that I see the 575 or so chilren as seriously as I like to.

Which is timely because it fell right into High School application season. Yes, season. 30 years ago this was not even a process. Now it’s an ordeal. These are tests to take for every type of school one is interested in. There are then scholarship tests to try to pay for the non- public ones. Open houses, “shadowing” appointments, where she goes to the school for the day to “see.”

This all seems to culminate by some time in December and then be followed by 2 months of waiting. It’s amazing how much “hurry up and wait” there really is.

And I am left to sit here. Quietly. I will her body to do as she wants. I that the right high school for her, is the one she attends. And, I watch as 8th grade starts to pass by.

Your experiences shape you. Your disease doesn’t define you. But, in our case it provides, stamina, endurance. tenacity, grit, and a tendency to want to over-achieve. Not a terrible list of negatives.

“Normal” is a relative term, constantly changing. When we are on the brink of better health, we sometimes find ourselves guilty of waiting for the other shoe to drop. We are often guarded and on the defensive. It’s hard not to be.

This past month a former student buried his mother and father 2 weeks apart. He is Meghan’s age, and while he had step-siblings, he was the only child of his parents. I haven’t had him out of my mind much.

These warnings, these screenings, these appointments, these surgeries, at times leave me down. But, not for long. We’ve been ordered to be vigilant.

There are no promises.

Today bleeds into tomorrow. September just about swallowed up October. And October seems hungry for November.

Stop. Or at least pause. Enjoy the process, no matter how tedious or taunting it may seem.

Hug your family. Call your friends. Even if it’s only for 5 minutes. Send a text. Stay in touch.

And I, I will be working on taking my own advice!

Overlap and Regrowth – Living with Cowden’s

Published on October 5, 2016 by beatingcowdens1 Comment

So, the night I was recovering from my breast surgery on August 19th, I haphazardly checked my Email.

There sat an Email from Meghan’s endocrinologist that shook me out of my anesthesia recovery pretty quickly. There is no time “in between” because there is usually SOMETHING going on. Overlap is a way of life.

Meghan had had lab work drawn the 3rd of August. Routine thyroid labs, and some tests from the gyn worked in. On the 18th the EMail from the gyn told me she was suspicious of a few lingering “issues” and we would address them at her late fall appointment.

The endocrinologist’s EMail said he was concerned about the resurgence of her “thyroglobulin” levels. He wanted to now treat her as a “high risk” thyroid cancer patient.

I almost dropped the phone, alone in my dark room. The last paragraph said he’d be on vacation for two weeks, and we could talk when he returned. I read. And I reread.

Decoding step by step – “thyroglobulin” is created solely by thyroid tissue. Someone with a complete thryoidectomy would have non-detectable levels about 3 or so months post operatively. Only thyroid tissue generates thyroglobulin. If some was left behind after her surgery a small number would have stabilized early. But for it to be gone, and then show up… This meant there had to be regrowth. And yes, it happens. Maybe to everyone, but definitely people with Cowden’s Syndrome. We regrow lymphoid tissue.

It’s a superpower of sorts. Except instead of being a really fun, save the world, or generate sunshine and happiness, superpower, it’s more of the – hey let’s add some more worry to your life superpower.

While the pathology on the thyroidectomy was totally benign, the mind can play lots of tricks. Lots of tricks.

I’m not slow. I am pretty well read. I’m equipped with the knowledge that having faith and worry are counterintuitive. Except I’m honest. And with matter of my girl, worry sometimes overwhelms. I never claimed to be perfect.

So I spent the last 6 or 7 weeks retreating. I barely spoke of this fear, this nagging thought that not only could the thyroid be growing again, but what if… what if all those precancerous things that we took out with it were somehow festering.

I made it my job to access the lab work. And it was a JOB. You would have thought what I was asking for just to see a list of messed up thyroid numbers. We live in a pretty crazy society. But, finally, after 2 weeks of labor, and getting increasingly vocal, I received 4 copies. All on different days. All from different people. But, I got to look at the numbers.

I am a numbers person, so I took some relief in the thyroglobulin being only 3. Undetectable was better, but 3 was on the better end of things. It was clearly well under that “10” I had found. So I took to waiting and ticking away the days until the next blood test. There was a thyroid dose change, and 6 weeks.

I broke my toe while recovering from the implant exchange, a few weeks after learning I was suffering not only from a single vocal cord lesion, but vocal atrophy secondary to premature aging, the latter which was likely due to the hysterectomy that became necessary after the breast cancer diagnosis in 2012.

And yes, I meant that to be a run-on.

It all kept me as occupied as I could while I hid in the start up chaos of September. I hate September. But, when you’re suffering personal angst and need cover under which to hide – it’s September for the win. I poured myself into setting up 25 classes, and over 550 students, logistically, and academically. It took some time.

And I kind of just ducked. Phone calls, texts… I played along.

“High Risk” thyroid cancer patient… like a recurring nightmare.

One of the reasons I was afraid to talk was the fear that someone would talk to be about thryoid cancer being the “best” cancer. Please, no one ever do that. When it comes to my child, a survival rate in the 90%s doesn’t soothe me. When it comes to my child, I, like every other parent want 100%. Nothing less.

I was scared.

We got the labs drawn at the hospital on Weds. the 28th.

On the 30th I was exploding. Every second seemed like an hour. Every scenario was playing through my head. So when I got the call that the test wouldn’t be ready till Monday I dissolved into a tiny puddle.

And then I did what every other mother does. I put on my big girl pants and got through the weekend.

Then Monday there was a brief phone call.

The thyroglobulin has returned to undetectable.

WHAT? How does that even happen? I sent out a million questions rapid fire. Most of them had no answer.

Crisis averted. Prayers answered.

I explained to Meghan why her Mom had been a bit extra on edge. She’s really growing up because she was grateful to have not traveled that mental journey with me, and appreciated me letting her in when it mattered.

Next blood test November 11. And we’re going with the theory that the thyroglobulin was a one time deal. An error. A miracle. Whatever. A win.

We’ve got 6 weeks. Some Mommy doctors. Some swim meets. 6 weeks. Sometimes that feels short. Right now it’s blissfully long.

On my knees in gratitude, we remain…

#beatingcowdens

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

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!)

The Waiting Place…

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

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

pa·tience

ˈpāSHəns/

noun

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

pa·tience

ˈpāSHəns/

noun

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

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

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

#beatingcowdens can be exhausting.

“We’re All in this Together…”

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

High School Musical – We’re All In This Together

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

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

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

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

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

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

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

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

HTTPS://www.gofundme.com/wesupportride4gabe

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

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

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

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

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

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

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

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

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

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

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

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

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

Sneaking in a Proud Mommy Moment 🙂

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

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

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

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

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

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

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

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

“1,2,3…BRAVA!”

In a Dark Room…

Published on May 30, 2016 by beatingcowdens1 Comment

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

Late

After she should be asleep

I’m thankful that we can relate to each other

Different – incredibly different

Yet so much the same

Yesterday I hurt a lot

An unusually extra tough day for me

But I looked at her and I kept on plugging

She knows no other way and leaves no other option

I hate that she bears this burden

There are days it could destroy me

But it doesn’t

She simply motivates me to keep going

She pushes me to be a better person

A better mother

A better human

Often without saying a word

Sometimes in her dark room we’ll share

What we worry and wonder about

Sometimes we tell things we’d never tell another

Sometimes we laugh

Sometimes we cry

Mostly we learn things

Still after all this time we learn things

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

And she looked at me quizzically and wondered aloud

Why do you think I keep going?

And in that moment there was even more clarity

Daughters and Mothers

Mothers and Daughters

We worry and wonder

We argue and spat

We chat and share

We battle

Not each other

But this disease

Together

Different but the same

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

I hate every moment of this road she has to travel

But I am selfishly grateful for the quiet, determined way

She keeps me balanced and focused on what matters

So we can help each other

And remain

#Beatingcowdens

FOREVER

A Letter to Me as a “Mommy-to-Be”

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

Dear 30 Year Old Me on Mother’s Day,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

With love,

Your 42 Year Old Self

“Hey, I follow you on Facebook…”

Published on April 29, 2016 by beatingcowdens1 Comment

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

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

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

Then we looked at each other.

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

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

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

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

Spring Break 2016

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

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

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

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

From “It’s a Hard Knock Life…”

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

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

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

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

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

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

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

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