Recovery Room- The Waiting Place

Published on June 3, 2024 by beatingcowdens4 Comments

The recovery room is the land of mixed emotions. So grateful to see her on the other side of another surgery, yet so terrifying to see her pulse ox dip as they race to get her on oxygen.

Gutting to watch her screaming in pain until finally a cocktail of pain meds knock her out completely.

She should rest. After squeezing in her GRE from 9:30-11:30 she fired off 6 applications to Physician Assistant programs before catching less than 2 hours sleep.

That sense of urgency is our 24/7.

We left home at 4:30- arrived by 5:30 and was in surgery by 7:30.

Three and a half hours later, we got a decent- yet not perfect report and I sit by her bedside… waiting.

Waiting to see if she’ll breathe without oxygen the way she needs to.

Waiting to see how they’ll manage her pain.

Waiting to map out the road to recovery.

Waiting.

He got the tumor. But with it went some healthy muscle too. He got the tumor, but the SOB had a vascular component too.

He got the tumor… but…

There’s always a but.

For now we sit. And wait. And HOPE for all the best answers to chronically complicated questions.

#beatingcowdens

Have you had any surgeries?

Published on June 3, 2024 by beatingcowdens4 Comments

It’s an actual question people ask. And I guess it is a fair question for most people. But, we aren’t most people. We are 1 in 200,000 tumor growing Cowden’s Syndrome people.

The question makes everyone in the room uncomfortable because when they start to realize the over 20 surgeries for my girl alone will NEVER fit on the three lines they allow, they ask me to prioritize. But, I have. And the are all important. I even print them out so they don’t have to rewrite them.

It’s like the medication question. Yep. There are a bunch. Yep. They all have value. Yep. They all have side effects. Good for you that you have never even taken a Tylenol. God Bless you and your healthy pain free body. But be careful not to imply that it is even a choice not to control the unrelenting pain somehow. I mean, you want us to behave like decent humans right? Because you can’t have us pleasant and medication free, If you want to be sure maybe we can place a giant tumor on your sciatic nerve. Or let you contend with the after effects of a high flow AVM in your knee, and the shifted patella, or in my case a boatload of hemangiomas on your spleen, and bodies that are just off sides 24/7/365.

I wonder how people would react if I started asking the same question of them…. “What do you mean you haven’t had ANY surgeries?” People find our lives odd. They like to throw well intentioned platitudes. “Is she better now?” “Is it fixed?” “She’s so strong.”

Yep. We’re strong. The weight is heavy. Oppressive at times. The trauma is real and ever present. And to the well intentioned “You should see a therapist…” yep, we’ve got it thanks.

But, no. It’s not “fixed.” It’ll never be fixed because the broken PTEN gene proliferates every cell of our bodies. It has taken a toll on our bodies, and will continue to do so. Active surveillance for cancers and tumors that are flat out likely to grow and show up is just our reality.

It has taken a toll on our spirits. Differently, yet a significant toll on both of us. We are a lot. Chronic issues make even the most well intentioned people uncomfortable. Pain changes you. Trauma changes you.

This life can be so lonely. It is hard to relate to experiences and people when your reality makes most uncomfortable. The isolation becomes easier to manage than the abandonment.

We are a lot.

We are often defensive. Being left behind so often will do that. Being judged too early and too often will do that too.

I think today as I wait for a surgical update I am just tired.

We arrived at 5:30 at 7:30 they rolled her away from me.

Our hopes and dreams right now rest on the resection of her thigh muscle to remove a tumor situated somewhere between her femur and her sciatic nerve.

As I sit here with Ella her service dog, praying and waiting, I can’t help but choose hope.

This girl, well woman, is a force to be reckoned with. The number of appointments she has crammed into the last 3 week is ridiculous. She’s taking an EMT class 12 hours a week with her dearest friend, and took the GRE for the second time at 9:30 PM LAST NIGHT, then submitted 6 applications to physician assistant programs for next fall before closing her eyes for about 2 hours.

She is so determined to overcome all the chaos that has been her life and do BETTER for other that she inspires me.

Join me in HOPE and prayer for the successful removal of this tumor with complete and total nerve function in tact.

Because, What if it all works out?

#beaitngcowdens

A few photos from our pre-op selfie tradition this AM…

And it’s a…Hernia!

Published on January 25, 2021 by beatingcowdens1 Comment

Now that I have your attention, I promise, you’ll get to the end of this episode of “You Can’t Make it Up!”

The day started with another successful training for Meghan and Ella at Barnes and Noble. They are ready for their Public Access Test, and I am optimistic they will do well together before we get on the road to return to New York tomorrow.

We waited over 3 years for this dog. There were many days we thought she was not meant to be. There were honestly more days of feeling defeated than hopeful.

Early in the process Meghan interviewed via FaceTime in my car, before a swim meet, with Jennifer, the owner of Medical Mutts. During the process we worked with Eva, director of client services.

Early in the process Meghan read everything she could get her hands on. As the years went on she put the books away until they gathered dust.

In between there were countless emails between myself and Eva. There was always a quick reply, and kind reassurance. Although as I travel back through three years of email I can see more clearly now where there were some lapses in our communication. Meghan is a very different human than she was in 2017. Because of that, her needs changed. At one point her dog was to also be capable of mobility assistance. Over time, we dropped that piece as her legs got stronger. The one thing, the biggest thing that never changed, was TOUCH.

Meghan needs to sleep holding something she can feel breathing. For a while it was me. Then I was able to sub in some dogs, first April, then Jax. The biggest thing, the first thing we wanted a service dog for was the sleeping. A dog to sleep with her, and to help her wake to an alarm, would give her the first major steps towards independence.

During this past week many things have become evident. Some were expected, and others unexpected. Some were awesome, and others were just not.

One thing that has been solidly evident is that Ella’s trainer, Michelle, is true to her word at all times. Michelle did not present as warm and fuzzy. (Actually her intelligent, focused presentation reminded me a great deal of Meghan.) She has proven to be awesome, and utterly effective. As the week has gone on every thing that Michelle said she taught, every single behavior has become evident. Michelle has gone above and beyond this week to make sure that Meghan and Ella pair effectively. She has come to the hotel to practice elevator and long lead walking. She has met us on her days off. She made it her business to meet up to being Ella closer to the touch Meghan needs. Today she brought a blanket for Ella, talked through a plan with Meghan and once again amazed me with her genuine sincerity.

Michelle taught all she was told to teach. And I’ll leave that right there.

Somewhere there was a breakdown in communication above her that led to confusion on Meghan’s needs. It could have been due to the length of time, or the changes. It could have been a mistake. It could have been any number of things. But it happened. Meghan will succeed building the rest of the behaviors Ella needs. Over time.

And to some extent that time is normal. No service dog team goes home fully functional. They need to learn each other. It is an arranged marriage where the partners need time to learn what generates happiness in the other.

So while we have mixed emotions about a bunch of things, HOPE prevails.

Even today. Today I spoke to Jennifer, the owner, for the first time since 2017. I spoke with her out of necessity.

By the third night we had Ella she was allowing touch. It didn’t take Meghan long to point out the lump in her side. We mentioned it. We were told to wait. We mentioned it again. Attempts were made to explain it away. We mentioned it again and finally today we were connected to their veterinary facility.

The vet said it is likely a hernia. He seemed unaffected. After a physical exam, and quite physical by Meghan’s description, he told Meghan to massage it, and take her to our vet if it got worse.

That was the icing on a slightly undercooked cake.

I spoke with Eva, who directed me to Jennifer. And that is how we ended up back on the phone today. Odd bookends to this experience, really.

I received the reassurance that Ella had been thoroughly checked by their vet. I internally contemplated his ability to be thorough. I was promised that the facility will pay for any medical bills related to the hernia diagnosis.

Ella meets our vet on Sunday.

This is not exactly the homecoming we were hoping for. Maybe our vet will see something different, or be able to offer some reassurance.

My mind can’t go too much past that.

I’ve got three years to reflect on, a public access test to cheer my favorite team through, and 750 miles to drive before we introduce Ella to Jax and April.

We will continue to take this journey, as we have done so many others, one day at a time.

Ella, you’re one of us now. Hernia or not, whatever comes your way, we’ve got you girl.

#beatingcowdens

Easy is for Amateurs

Published on January 23, 2021January 23, 2021 by beatingcowdens2 Comments

I knew it wasn’t going to be easy. I did. I just didn’t realize it was going to be THIS hard. I mean, maybe I should have. Easy is for amateurs after all. But, I didn’t realize it. And as a direct result I am just coming back to life after a week of anticipation, frustration, exasperation, disappointment and despair, because finally we have settled into HOPE.

There are so many things that are not quite as we expected. Some, because we did not ask the right questions, and some because the questions could not have been anticipated until we arrived. Yet other things were not as we expected because so much time lapsed from contract to “Team Training” that some of the things we were seeking most seemed to have gotten lost in translation.

The trip, all 11 hours and 750 miles was nothing short of exhausting. We ended it with a stop at Whole Foods before parking in the ice covered hotel parking lot. We promptly found someone to help, and paid a generous tip to have our car emptied to our 4th floor room while we waited out of the way of the black ice and the unwelcoming bite in the Indiana air.

We had a hard time resting that night, thinking of the union over three years in the making, that was finally only hours away.

When we arrived at Medical Mutts there was a warm welcome from Eva, and there was Marvin, the friendliest cat I’ve ever met to sit with us through paperwork. Michele, Ella’s primary trainer, came with Ella, and while there was excitement, there was hesitation throughout the room. There were no “fireworks” and no “Here Comes the Sun” playing, as I had anticipated so many different times before. There were casual greetings, and obvious work from everyone, human and canine, to try to figure each other out.

That is the part you don’t think about before hand. Or maybe you do think about it. But, then there is the difference between thinking about it, knowing it, and experiencing it. Ella is not a computer to be programmed. She is a dog. And for all the reasons we love dogs, she is a dog. She is also a highly intelligent, and extremely well trained dog. The former, her intelligence and even her ability to be trained are innate. Her training though was very much a labor of love.

Medical Mutts saw promise in this girl, a stray from the streets of Tennessee. They took her in from the rescue that had taken her off those streets. They brought her to Indiana and loved her. They worked with this beautiful girl knowing that she would one day become someone’s partner for life, and give them just the independence they were so desperately seeking. It is the whole reason this facility, these people, were Meghan’s focus years prior. The beauty of taking the unloved and abandoned and giving them value and purpose, that is the real reason we ended up here, at THIS facility.

I guess I just hoped, that it would be easier. But, easy is for amateurs.

Ella’s primary trainer was Michele, a well-spoken, professional and knowledgeable woman. When she first greeted us I found her a bit aloof. In less than two hours I realized she had put a good deal of energy into Ella and was protecting her best interests. She was trying to figure out if Meghan was going to give Ella the life she deserves. In less than two hours those two understood each other and I watched aloof become focused and driven to ensure she transferred all her knowledge of Ella to Meghan. I watched she and Meghan connect, like minded in many ways, and both were keen on making this union successful.

They worked Monday and the progress was spotty. Ella came with us to the hotel that night and all of us were in for an adjustment. We expected a dog who would hop on the bed and cuddle. But, Ella wasn’t accustomed to touch. My mind was a little blown, as we had sought this dog largely to sleep with Meghan, soothe her through nightmares, and wake her in the morning.

Tuesday they met again, and worked on some behaviors. My mind traveled from confused, to furious as I silently boiled at the thought we had waited this long for a dog that lacked what we had asked for in the first place. Further, she was distracted and needed seemingly constant redirects. When we entered the mall and both trainers seemed stunned at what they saw, I actually took a walk to choke on my tears. How after all this time could this be what was happening?

When I had originally looked at the schedule I was irritated that we had an off day Wednesday. I needed to go back to my life. What was this “off day?”

And then it was Wednesday. And I understood. It was a huge pivot in the journey. Meghan and Ella had some fun time. Ella stayed on the bed, and even let Meghan touch her. Ella played. She rested. Meghan got some confidence. They began to connect. It was so much slower than I had planned in my mind, but so few things ever go according to plan, I knew that often the best things came out of the detours.

There hasn’t been a day that we have not felt the full gamut of emotions. We’ve laughed and cried and screamed and yelled. We’ve giggled and cheered. We’ve passed out from exhaustion.

This morning Meghan and Ella had successful outings to CVS and Barnes and Noble. And I mean, really successful. They did the best team work I have seen so far. We came back to the hotel to playful “zoomies” and another training session with Michele.

And then tonight there was exasperation on a trip outside.

The pendulum is relentless. But every swing seems to leave them closer to being a functional pair. Ella is asking for contact. Meghan is reinforcing at rates that keep her interested and focused. They are growing together.

The weekend is for resting, playing and some informal sessions. Monday we brush up. Tuesday they take their public access test before we begin the journey home.

Tuesday is not the end, but another beginning. There will be so many beginnings in this journey. And maybe that’s the point.

Nothing in Meghan’s life has been as we planned. And not much has been easy or smooth. Yet every single step has brought us to places we’d never imagined possible.

Easy is for amateurs.

Meghan and Ella you’ve got this! Let the journey continue.

#beatingcowdens

Pandemic Got Your Tongue?

Published on March 31, 2020April 4, 2020 by beatingcowdens2 Comments

There are things you could do without ever experiencing. Clearly #COVID19 is one of them.

I live in NYC. I have lived here every one of my 46 years.

I was born and raised here. I graduated from public school, SUNY and then CUNY. I work in the elementary school I graduated from. I have lived in the same zip code pretty much my whole life.

I watched my local community rise up many years ago when my young cousin battled Leukemia. I remember that, even over 30 years later, whenever a neighbor I don’t know is in need.

I watched my local community, many aspects of which were decimated by the horrors of 9/11, rise up in indescribable ways.

I watched my community draw together again after Hurricane Sandy wiped out neighborhoods.

We worked together. We prayed together. We loved on each other. We gathered together. We shared what we had.

I live amongst compassion, bravery, dedication, resilience, tragedy, and grief.

I also live amongst some selfishness, stupidity and inflated senses of self importance.

The greatest city in the world gives you all that and then some.

Despite having a small social circle, I am a mother, a wife, a daughter, a granddaughter, a sister, a niece, a cousin and a friend.

I am a patient with a PTEN mutation called Cowden’s Syndrome.

I am a cancer survivor.

I have a teenager with 2 rare diseases, and a brain that runs 24/7.

We are immune compromised.

I am a NYC Public School Teacher.

My husband is an essential worker.

Daily the news reports are often silenced in my house. I know what’s going on around me. A few numbers across a screen give me what I already know. Hope of blossoming spring has been muted by tales that nightmares are made of.

I spend the days trying to remotely engage young minds in math games. It is, if nothing else, a welcome distraction.

Suddenly, this community that does so much better when we can gather together is isolated.

Our friends are sick and dying quickly. To much of the country and the world they are numbers. To us they are humans with names and families. We can not visit. We can not comfort. We can not gather. We are leaving our loved ones at the emergency room door, praying we will see them again.

We, alongside the whole world, are fighting a virus that seems to have a strangle hold on my home town.

People like to make themselves feel better, but the truth is this virus does not discriminate. We can barely even find it, let alone attack it.

We are chasing it. It clearly has the upper hand.

We have been told to #flattenthecurve but, I fear the sheer numbers of us make this so much harder.

My husband comes from work removes all layers, scrubs, showers, washes all outer garments. He gave up public transportation to reduce his “touch points.”

We are grateful for the home we have. We are grateful for each other, for the internet, for Zoom and FaceTime, and virtual church. We are grateful for washing machines and space, and luxuries never to be taken for granted again.

We are grateful for computers that allow for everything from Advanced Biology to voice lessons and test prep.

We leave for 2 walks a day at off peak hours.

The stores I used to walk in and out of because I could, are saved for when lists accumulate and there is need.

We order food a few times a week, a calculated risk carefully played out because the restaurants that have openly supported our fundraisers through the years, deserve our support now as well.

The schedule has slowed from its chaotic pace. Swim season just isn’t. There is no college search right now. Doctors are cancelling, and rescheduling. Routine check ups are on hold. And honestly I don’t mind. Even this chronically painful foot is waiting its turn while really important things happen at the local hospitals.

We take this call to social isolation really seriously here.

Selfishly, I might even enjoy a little of this forced family time. A year from now my girl will likely have her college chosen and be starting her transition out of our nest.

Having Cowden’s Syndrome has done a lot of work on my perspective through the years. I’ve learned that you can’t keep waiting for it to be over. That’s true of everything in life.

A dear friend has told me often, “You can have it all, just not all at the same time.”

You have to live each day, from beautiful to unspeakable. It is the only way to preserve feelings of compassion, empathy and focus on the greater good. You must laugh and cry, and scream and yell, and feel all the feelings.

I have scanned 3 and a half years of letters Pop wrote to Grandma in the years he was deployed during WWII. Those years preceded a marriage that lasted over 70 years. I think of them all the time, but even extra these days. I think about how hard it would have been to socially distance from them, but also about the lessons they could have taught all of us in patience, resilience and sacrifice for the greater good.

I’ll use some of the next days to read every one of those letters before uploading them to create a hard copy to be shared in my family for generations.

There is a lot to be learned from the “Greatest Generation.”

Sometimes I get angry at flippant or arrogant folks I see, in person or on the news. The people who think they are too good, or exempt from this global pandemic. The people who don’t think they have to do their part.

Then, I decide to focus on the overwhelming number of people who are doing whatever they can to make this better. All those essential workers we learned about in the first grade unit on “Community Helpers” are the ones I focus on with gratitude.

I am not better than this virus. I am just as susceptible as the good people across the globe who are struggling with these infections.

I isolate not out of fear, but out of respect.

I isolate out of respect for those who can’t.

I isolate out of respect for our first responders and essential workers.

I isolate out of respect for those who are living with this virus.

I isolate because maybe one less person will get infected because I did.

I miss the way our city has come together in all other times of tragedy.

I miss hugs, and offering comfort and being comforted.

I will message the people I miss so much, and check in on them.

And, instead of complaining the time away I will spend more of it in prayer for those who need very much not to feel alone, reaching out through the technology I’m blessed to have, with gratitude that if I am forced to isolate I have a comfortable home and a few of my best friends to be with.

#Family

#Flattenthecurve

#COVID19

Still #Beatingcowdens

“I am the Lorax, I speak for the trees.”

Published on November 16, 2018November 17, 2018 by beatingcowdens2 Comments

The call came to my cell phone on a Friday afternoon a few weeks ago. It took me a few minutes to process that Sharon from the Teddy Atlas Foundation was telling me Meghan had been selected to receive the Dr. Theodore A. Atlas Humanitarian Award. The award is named for a local physician who epitomized the concept of what it meant to be a physician through more than a half century of people centered care on Staten Island.

Dr. Theodore A. Atlas Biography

I knew of Dr. Atlas, who did most of his work before my time, because I followed the work of the foundation, started by his son, Teddy Atlas Jr. The Dr. Theodore A. Atlas Foundation is a name known to locals who are inspired by stories of people helping people. I had watched this foundation through the years, grateful that people who genuinely want to help are not afraid to just do it.

Teddy Atlas Biography

I know I stumbled, and may have sounded like a bumbling fool as I asked her to repeat herself. “Yes,” Meghan will accept gratefully, I replied without asking. I was given the date and time for the dinner.

I’m not sure either of us really grasped the enormity of the honor until we looked up the event on line.

Teddy Dinner celebrity line-up

We had just struggled to get 100 people in a room for a fundraiser. Here they were looking at close to a thousand – from big names to community favorites.

When she learned she’d need to give a brief acceptance speech, she took a deep breath, and then thought. A whole lot.

We talked about humanitarian, as a word and as a concept. The more we bounced it around, the more we both knew the concept suited her. Meghan has always wanted to make a difference. She has always done what she can to speak for those who can not speak for themselves. She is not sure what her future career will be, but she is sure that she must know she is ‘helping.’

We talked about quotes. I gave a few suggestions. She came back to me with Dr. Seuss. She nailed it. As usual.

The Lorax speaks for the trees. They can not speak for themselves, so the Lorax advocates for them. It resonated with her.

Here is Meghan’s speech:

Good evening, I am extremely humbled and grateful to be standing before you tonight.

When I was 7 I never thought my life would turn out this way. I never thought I’d be accepting a prestigious humanitarian award. When I was 8 and my life was turned upside down by a diagnosis I didn’t understand, I was in shock. By the time I was nine, I realized that no one even knew what my disease was. Then I realized that if I didn’t do something, there was a chance no one else ever would.

Cowden’s Syndrome is a mutation on the PTEN Gene, a tumor suppressor gene. Because of this disorder I have extremely high cancer risks, and grow a lot of tumors. I am in the hospital being poked and prodded on a regular basis. I am constantly scanned and monitored. Every time I step into a doctor’s office I am holding my breath, praying that I will get even just two more months of peace, without a procedure. I am 15, and I have had 18 surgeries. This disease has tried to break me over, and over again. And, because of this, with each passing day I become more determined to overcome these challenges, win my daily battles, and lend a helping hand to others in need.

I am living the life of a rare disease patient. I am closely acquainted with the downfalls and struggles of my disease, and others. Because of this, I am fully cognizant that there is very little awareness about rare genetic disorders. Some of these disorders are fatal, and others can just make your daily life torturous.

My disorder specifically is sometimes classified as an “invisible illness.’ No one sees my scars and my struggles because I don’t ‘look sick.’ I present as a healthy and intelligent teenager. When I was little I used to wish all my scars were able to be seen, and that they were all over my skin. I thought that maybe people would start understanding what patients like me go through a bit more if they saw some of the ramifications of these diseases.

Cowden’s Syndrome has not just impacted my body. There are undeniable, severe mental ramifications that have come with my struggles. I have a depressive disorder, an anxiety disorder, and PTSD secondary to medical trauma. In no way am I even close to normal. I have to fight ten times harder for what someone else can do physically. I struggle mentally to live a normal live and get past the anxieties that control my daily life.

I have been bullied since elementary school there are some days where I come home, curl up in a ball and cry. It’s really hard to make friends when you’re at the doctor so much, and it’s even harder to deal with teenage drama when you’ve had to act so much older then you are your whole life. Whether it’s been because I’m different and they don’t understand, or because I catch on to things quickly, I always find myself that kid with the target on my back for bullies.

People like to say to ‘not let your hardships define you.’ Personally, I think that’s idealistic and impossible. The events that you have gone through in your life have created who you are. Sometimes I wonder what life would be like if I did not have this rare disease. Then I shake myself out of it, and realize that I’m a pretty cool person who has the ability to change lives. And, that if I didn’t have Cowden’s Syndrome, I wouldn’t be growing into the person I am.

My mother and I host annual fundraisers called “Jeans for Rare Genes.” They started out with all of the profits being donated to the Global Genes Foundation, a 401C3 organization that raises money around the world for the purpose of providing support to patients with rare diseases. Then, the PTEN Foundation, an organization specifically devoted to patients with PTEN Hamartoma Tumor Syndrome (Cowden’s Syndrome) was born. Once this organization was created, we began fundraising for them. To this day, our annual fundraiser is one of the biggest donations that goes into this organization and I am proud to know that our work is making a difference.

There are less than 2,000 diagnosed Cowden’s Syndrome patients in the US. Sometimes it is hard to see the light at the end of a lonely tunnel. The PTEN Foundation is close to putting up a patient powered registry that will start things moving in the right direction. We have a long way to go. We need funding for research, and then we need medication and hopefully a cure. There is far too little awareness about Cowden’s syndrome and all rare diseases in general. They are very real, and very present in our society.

This honor will serve as a stepping stone for me. My awareness efforts are not nearly done. In fact, I view this as a new chapter in my life, where I will have the confidence and courage, needed to continue raising funds and awareness, and that I may hopefully be a part of changing the lives of other rare disease patients.

In the words of the Lorax in the famous Dr. Seuss book, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

With the number of people who care in this room tonight, I look forward to a future of hope and promise. Thank you.

The speech ended with Teddy Atlas committing $5,000 to the PTEN Foundation on Meghan’s behalf.

It made me extra glad that Kristin, the PTEN Foundation President, who has become a dear friend, had made her way to New York from Alabama to celebrate with us.

Yesterday, November 15, 2018, NYC was almost totally crippled by an unexpected snow storm. In all of my years here I have never ever seen anything like it. I have seen worse storms, but NEVER the crippling state of things I saw yesterday. I left work to get Meghan at school at 2:20. On a busy day it takes me 22 minutes to arrive at her school for pick up. At 4:10, after crawling for HOURS and getting so close, I was being pushed up a hill out of a pile of snow. I was in such a state, feeling frantic that I was literally not able to get to her. And even though I knew she was safe, it was a helpless feeling I’m not looking to duplicate any time soon.

At 4:15 she sat in my car while we turned around to head back. At 5:35 the 8 mile round trip was complete, but we weren’t out of trouble. Three hours on the road and I never saw a plow or a salt truck.

My parents agreed to drive in their very capable pick up truck. My husband made it safely off the bus from Manhattan. It was far from the poised and put together departure I had hoped for, but we got there.

I’m not going to lie, there were a few moments there where I thought, “WHAT THE HECK? Why does EVERYTHING have to be surrounded by drama?”

But I pulled myself together. There are far bigger problems in the world. We made it. We were safe. We were together. Meghan’s dear friend greeted us there. I looked around and soaked up the enormity of the honor my 15 year old was receiving.

I looked around the room full of energetic, generous spirits.

I looked in the booklet on the table and found this. Despite a few minor errors, the idea that this was published here. Now. For everyone. Well, it kind of blew me away.

I listened while Ciaran Sheehan sang, with chills down my spine. Having played leading roles in two of Meghan’s favorite Broadway shows, “Les Miserables,” and “Phantom of the Opera,” he was the one she wanted to meet. And she did.

My girl is not perfect. She struggles. We argue. She sometimes acts like a teenage girl and I have to remind myself she is one. She is intense. She is focused. She is determined. She is deeply principled.

She is learning to find balance. She is learning to laugh. She is learning to pause. To believe. She is letting herself be successful. She is working daily on becoming the best version of herself. She is my hero.

And Meghan, as one of the “trees,” I am happy to have a “Lorax” like you.

Because as Dr. Seuss said, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

You are way more than

#beatingcowdens

You’re going places kid. And I’m so grateful to be along for the ride.

Tragedy Surrounded by Love

Published on September 20, 2018September 21, 2018 by beatingcowdens5 Comments

My cousin Kim stood, graveside, holding 2 flowers over the 7 month baby bump under her black dress. Two roses. One was red and the other was pink. One was for her, and the other for baby Mackenzie. It was time to lay to rest her husband, and the father Mackenzie will only know through the stories and photos a strong community will share with her forever.

Exactly a week earlier we gathered together in joyful celebration to shower Kim and Nando with love for Baby Mackenzie, due in November. Little pink clothes, laughter, anticipation and love for a baby they waited so long to have.

The next day he was gone. That fast.

He was one of five children, and part of a large family.

My family, Kim’s family is large as well. Our fathers were brothers, in a family of 9 children, and although mine passed away in 2013, the love shared by all runs deep. We are close to 30 first cousins thick. The second cousins are starting to increase in number.

I sat in the funeral home in stunned silence most of the time. But, the room was crowded, the lines were long, and the hugs and tears were all genuine.

I didn’t know Nando as well as many others. As a matter of fact, I wish I had known him better. Clearly, judging by community response and turnout, he carried the same heart as my cousin Kim in his larger than life body.

I can’t make a bit of sense out of any of it. So I have to lean on my faith, and do whatever I can to offer support. Sometimes tragedy just is…

Kim is strong, almost stoic. She is a mother already, carefully shielding my newest little cousin from the anguish in her heart. This beautiful baby will bring joy to so many.

We do not know the hour…

Tomorrow is not promised on this earth…

When we talk about #beatingcowdens, we talk about vigilance. We talk about a warning system. We already know what we are up against. So often I can’t help but wonder how many people would give anything to have had warning.

It’s all perspective. Sometimes I have to pause here and tell a story that is not about us. That is not about Cowden’s Syndrome.

There is a generosity of spirit that lives in so many. I witnessed it last week in a community outpouring of love.

My Uncle put it into words about his son-in-law.

Although I am not surprised.

I have received that generosity of spirit from Kim and Nando, and the family so many times.

Pay it forward. The idea that you do good things with no expectation of repayment. That’s how they live. This week we got to witness a little bit of the good that comes from living life for others.

More than one person my cousin works with, sat with me at the funeral parlor to ask about Meghan and I. I didn’t know them. They knew of our story through Kim.

Currently our fundraiser for the PTEN Foundation is scheduled for 10/28. I contacted my Aunt, and asked if we should cancel. I needed to know if it was too close. I would never ever want to be disrespectful.

The response?

Don’t cancel. Kim plans to be there.

I guess that’s just what family does for each other. And there is always plenty of room at our table.

Pull up a chair. We’re in it for the long haul- together.

Triage- A Way of Life

Published on April 26, 2018April 26, 2018 by beatingcowdens5 Comments

Triage. The word hangs with me like the memories of countless Emergency Room visits.

Triage. Take care of the most serious first.

It’s the reason we might wait hours for stitches, and barely a moment for a trauma.

I get it. It makes sense in the ER. It also makes sense on the battlefield, or in other places where there is widespread injury to be treated.

The thing is, you typically don’t stay in those places FOREVER.

Places we equate with triage are not places of comfort. And that’s where this life with Cowden’s Syndrome can get tricky.

You see, lately I can’t shake the feeling that life is triage. 24/7/365 damage assessment, and handling the most critical first. Vigilant. Hyper-vigilant. ALL. THE. TIME.

When you live with a chronic illness, a syndrome that causes cancer by its very definition, it is so easy to get wrapped up in monitoring and preventative care. And then there are the times that you go for those monitoring appointments and they require their own follow-up. This condition can easily morph into a beast that can swallow you whole.

And we’re at it times 2.

What I refuse to allow this syndrome to do is take away any more from my daughter’s life than it has. To the best of our ability, she will do “teenage” things, and she will do things she enjoys.

But, lately that has become quite the juggling act.

I am monitored twice a year by endocrinology (post thyroidectomy), my breast surgeons, and dermatology. I am monitored annually by gyn oncology, and oncology. This is post-bilateral mastectomy (stage 1 DCIS) and post hysterectomy. I am monitored every 5 years for colonoscopy. I am also monitored with abdominal ultrasounds for 4 hamartomas on my spleen, and a cyst on my kidney. This may not seem all that impressive, but those are just the appointments if everything goes well. That’s not additional scanning, blood work and biopsies. None of them are close to home either.

Not to mention, I am still searching for a local primary care doctor. In addition, there is dental work, both routine, and the emergencies the stress from grinding my teeth keep causing. I’ve been referred to another oncologist who specializes in genetic diseases, and I need to get in to see her. I just completed vascular surgery, with its pre and post op appointments and recovery as well.

That’s just me. Me, and my full-time job. And, like every mother, my needs are not the most important.

My girl sees endocrinology twice a year. She is still, 4 years post-op, trying to get thyroid function balanced. She sees gastroenterology, and dermatology twice a year. She also sees an adolescent gyn twice a year, courtesy of precancerous tissue already uncovered in her teenage uterus. She sees a chiropractor every 2-3 weeks for pain management. Right now, amid diagnosis of the small brain tumors, she is seeing neurology every three months for new MRI scans. She sees orthopedics every 8 weeks. They have been monitoring her knee for years, and recently stubborn tendonitis in the shoulder. There have been a few MRIs of late. She has seen physical therapy weekly since the fall, and is now working on twice a week.

She is tired. Partially because of her schedule, and partially because of her sleep patterns. Despite a regular bed time, she struggles to get quality sleep. It is hard to turn her brain off, and for her to get rest.

She has developed Post Traumatic Stress Disorder (PTSD) and anxiety, secondary to consistent medical trauma. She is working through it – but, like everything else, it is a great deal of work.

She is awaiting word that her service dog is ready. The call could come any time in the next 6 or so months, but we are hopeful this dog will help her through what can be some trying times.

She is an honor student. She is a swimmer – at least 5 days a week, for 12-15 hours a week. She is in weekly vocal lessons, and a theater group that meets 3.5 hours a week. She enjoys a local church youth groups.

She has food allergies – restricted from dairy, gluten and soy. And seasonal allergies to all things pollen.

None of this includes normal things. Like dentist and orthodontist visits, or even haircuts.

It is easy to get isolated.

She has a strong sense of what is right and wrong, and can be rigid in her perceptions. But, life has shown her things most adults, let alone people her age, have ever seen. Just as that strong mindedness flusters me, I refuse to try to break it down. It is that same will that has gotten us where we are.

And where we are, is in TRIAGE.

My iphone calendar is with me everywhere. I prioritize swim and theater over doctors when I can. Physical Therapy is a high on the list right now for pain management and strengthening.

Vocal lessons keep her going, as she can sing herself through a lot of stress. Theater is just a fun group of children, and I am not willing to sacrifice that.

I have a list by my desk of “next up” appointments, and because our availability is so limited, I am often booking months out. We travel to most – NYC or LI. Short on miles – but up to 2 hours each way – often.

We stack them when we can. Two appointments are a bonus, three is a banner day.

And every year about this time I dream of a summer light on appointments. I’ve yet to see it come true. Truth be told, almost every school holiday and every vacation is cluttered with things we need to do, but would rather not.

There is a blessing in knowing what we are fighting. There is blessing in having a warning system in place. But, there are still some days when I’m totally overwhelmed that I wish I didn’t know so much.

Triage.

Triage means that right now the physical and emotional health of my teenager trumps all.

So she swims 5 days. We do PT 1-2 nights after swim. We see “other” doctors midweek on the one day there is no swim. We do voice, and theater on Saturday.

I make my appointments on weekends when my husband can drive. I make my appointments a year out so I can stack three in one day in the summer and on February break. I schedule our surgeries for February of Easter vacation when I can.

I plan our fundraiser now for October, so as not to give it up, but in hopes of finding an easier time.

I research at night. There is always a need to learn what most of our doctors do not know.

I write, when I can. I love it and I miss it, but time just doesn’t seem to allow.

Hair, nails, eyebrows, and things I used to enjoy are forced into holes in the calendar, every once in a while.

Dust builds in places I never used to allow it.

Friends, well I have to trust they get it and they’ll be around when there is a change in the current status of things. I miss them.

Triage.

It starts early in the morning, waking up a teen who just hasn’t slept well.

It continues through the day – my job and her school.

After school is all about making it work. Swim, PT, or whatever therapy the night brings.

There are often phone calls, requests for lab reports, or battles about IEP needs… Emails go through the iphone.

Usually we are out of the house about 13 hours.

At night we pack everything so that we can be ready to begin again.

Triage.

Most critical right now is allowing my teenager to find her way, in school, in sports, and in her life. Most critical is giving her very real scenarios where her disease does not define her, and she is able to achieve in spite of her challenges, not because of them.

In order to make this happen, everything revolves around her schedule. There are opinions about that in all directions. There are people who would tell me I am creating an entitled, self-absorbed human. I don’t pay them much mind, because they haven’t met her.

When I signed in to be a parent I knew I’d be all in. I just never saw THIS coming.

Balance needs to always be in place, where the physical needs of either of us are never overlooked. However, non-essential appointments CAN, and WILL be scheduled around our availability. She will be a happier, and more tolerant patient when she didn’t miss something she loved with three hours in traffic and two in the waiting room.

Triage is meant to be something you experience briefly in times of crisis.

The “fight or flight” response is not always supposed to be on.

But it is.

At this time in our lives we may not always make for stellar company, although ironically, we’d love to have more of it.

At this time, we may say no constantly, to the point where you stop inviting. Trust me. We’d rather go. We actually enjoy your company.

At this time, we are so busy surviving, and taking care of the most critical needs, that anything not immediately essential gets passed by.

We are constantly evaluating order of events, but TRIAGE is fluid by definition. Unfortunately there are so many situations and scenarios, it is hard to see through them all.

Even at our toughest times. Even at our most overwhelmed days. We can look around and find our blessings. They exist in big things, like being able to physically attend 5 practices a week, and little things, like being able to WALK around the school without hesitation or assistance.

We are aware of those suffering illnesses far beyond our grasp. We are aware and we are grateful for the health we do have.

We are also tired. And lonely. And often overwhelmed. We also know this is the way the plan must go for now. And one day it may change.

Triage is fluid.

Life is fluid.

We all do the best we can with what we have where we are.

And we remain steadfast

#beatingcowdens.

Sometimes GOOD Things Do Happen…

Published on January 4, 2018 by beatingcowdens3 Comments

Sometimes really GOOD things happen. And when they do it is just such a jubilant feeling of gratitude and relief.

In October I wrote at length about Meghan’s struggle with PTSD and anxiety. I wrote in the blog linked below about our commitment to obtain a service dog.

A blog outlining Meghan’s journey towards a service dog.

When we made this commitment it came with an enormous price tag. It came after two of her doctors strongly encouraged the decision. It also came with a determined sense of urgency that we would do whatever was necessary to make this a reality for her.

After searching, we interviewed with, and contracted with Medical Mutts. We were drawn here because of their commitment to rescue their service dogs. We currently love 2 rescues, and a third spent several wonderful years as a key part of our family. We believe strongly in their mission. We put the deposit for the dog on our credit card, a total leap of faith that was so necessary at that moment when she needed HOPE.

Meghan had weighed out the pros and cons of a service animal. She had overwhelmingly decided on the pros. And, while we know there will be bumps in the road, her father and I trust her instincts.

The wait time for a dog can be a year. We had to get her into the system.

Then we paused and wondered how on earth we were going to manage the cost of obtaining a fully trained service dog from Indiana, with costs including a week of lost wages, air fare, hotel, and food while we were there. We knew we needed help.

We reached out to local charities and were directed first to ECHO –Emergency Children’s Help Organization

Previously, I had an idea they existed, but I had no idea we would ever need to ask them for help. The whole act of asking for help is humbling. But, if anything can humble you, it is the desire to provide your child with what she needs.

When I spoke to Gina she was friendly, helpful and calm. She spent so many different sessions on the phone with me as I drove her wild with questions. The application was intense and comprehensive, but I understood why.

With time and patience I was able to deliver her a completed application close to the end of November. When I submitted the application, I had complied a list of other places we would apply to once they decided if they were going to grant us money. I had never done anything like this before.

Through the process I was able to compile a history of Meghan’s charity work around the community. I was proud to be able to attach a document detailing her work.

The executive board at ECHO was presented with Meghan’s case awarded her a grant that exceeded my wildest hopes and dreams. With one phone call Gina was able to tell me that the balance of the dog would be paid in full, and there would be stipends for the travel to Indiana, the lodging, the transportation and the food. In short, we were told to focus on Meghan. The financial burden of the dog she needs so desperately had been lifted.

I have no doubt that Meghan, once she feels well again, will return to the charitable end of things, fundraising for PTEN disorders, and for those less fortunate. It is part of her heart.

Right now, we have HOPE to carry us through some difficult times. We have HOPE and eager anticipation for a dog that will become her best friend.

HOPE right now is spelled ECHO.

Please, if you’re inclined to support a quality organization – visit their website and consider a donation.