One of those dates that will stick with me forever.
On March 5th of 2012, I made my way early in the morning to the 10th floor of NYU. I signed all the papers with my husband by my side. I shook. I prayed. I was terrified. But, I had strong resolve, and there was no turning back.
Several months prior, my daughter, and then I had been diagnosed with the PTEN mutation that causes Cowden’s Syndrome. This mutation is responsible for increased tumor growth, both benign and malignant. It causes polyps, hamartomas, vascular malformations, and a whole bunch of other messy things. After our diagnoses, we began aggressive and age-appropriate screening.
Meghan was 8. I was 38.
They started with her thyroid. And immediately found issues.
At exactly the same time I was being sent through screening for the highest risk in my age group. Breast cancer.
I already had a mom- a 15 year survivor of bilateral beast cancer. (She does not have the PTEN mutation.) I had already had several surgical breast biopsies through the years, with increasingly foreboding pathology. But, I could not have been prepared for the surgeon I met in NYU Clinical Cancer Center in January of 2012. She introduced herself to me, having already torn through my previously received medical record, and said we should set a date. When I asked for what, she said quite simply, “For your prophylactic bilateral mastectomy.”
A little stunned, I caught my breath and asked why? “It’s not a matter of IF, but WHEN you’ll get cancer,” she said very definitively. “We need to get at it first.”
She sent me to her scheduler, who coordinated with the plastic surgeon. The date they came up with was March 5th. I asked why I couldn’t wait until the summer, and I was told that she thought that would be a huge mistake.
I called my husband, shaking. “Do what they say,” he calmly asserted.
So I left that January day with a script for a bilateral breast MRI – just to make sure there was no cancer- and a surgical date.
The MRI was negative. I am still amazed by that. Five weeks prior to the surgery there was NO FINDING on the MRI.
I met with the plastic surgeon, and much to her chagrin, I opted for immediate reconstruction, deciding to forgo the preferred method of tissue expanders. She reminded me that the results would be “imperfect.” I knew I could not delay my recovery by months. I had a daughter, a family, and a job to return to.
The surgery was uneventful.
I vomited repeatedly as I left the house that morning. I cried as I walked into the OR. My surgeon called me “brave.” I woke up with a strange feeling of empowerment.
I left the hospital 28 hours later. There were drains and wrappings, but there were things to do. I met on the refinance of our mortgage and managed parent teacher conferences with my daughter’s third grade teacher all before the drains were removed.
The day we went to have the drains removed, for whatever reason both Meghan and Felix were there. The plastic surgeon was the first to mention how lucky we were we caught “it” early. I was confused. She said, “The cancer. It was very early and far away from your chest wall.”
There was silence in the room as we all processed the word “cancer.”
She realized then she was the first to share the news. Our next stop was the surgeon. I pored over the pathology report and kept getting stuck.
I went from being a woman “getting ahead of things” with a “prophylactic bilateral mastectomy” to a “cancer survivor” in a moment.
I was told had I pushed the surgery to the summer, I would have been in a “fight for my life.”
I’ll always know I am more fortunate than any of the women who needed, chemotherapy, radiation, and other treatments to keep their cancer at bay. I have not traveled the road as they did. I will forever admire them. But, we are kindred spirits living with the daily knowledge that cancer cells once lived inside of us. That is a feeling, and knowledge that can not be explained. You either know it, or you don’t.
My implants lasted less than 5 years. The life expectancy is 15. This past summer they were replaced. Scarring was severe on the right side, and the scars needed to be broken up. A new pair replaced the old. Nothing flashy. Quick surgery, quick recovery. No big deal. Just a reminder of the reality that will follow me forever.
Today I celebrate that reality.
5 years officially Cancer-free.
Five years – and by the grace of God, countless more to go.
Five years- the first of many with sag-less silicone, size small shirts, and the ability to go bra-less without being noticed.
I celebrate my Mom – 20 years a survivor this year – my role model. My motivation.
I celebrate inside my own quiet- unable to speak as my voice heals. I celebrate even through miles of survivors guilt. I celebrate despite my broken heart as so many around me are taken by cancer. I celebrate because that is what they would want most.
Once you’ve been there. Lived it. Watched it. Seen it. You get a deeper sense of how precious life is. And you celebrate what you have each day. It’s not easy. Life can be messy. But, we do our best.
I celebrate to honor those who’ve been taken, those who work so hard every day to smile through, and for those whose diagnoses are yet to come.
Every day is a gift. As my friends at #stupidcancer would say – Get Busy Living!
We were worried. Attendance was at an all-time low. We had picked a bad weekend, but it was too late to change it.
We took the event off “eventbrite” this year, looking to take the fees they collect and get them to the PTEN Foundation.
It took a whole lot of record keeping, but it was worth it.
We had an “Early Bird Special” and free T-shirts. We opted for a new venue, a deluxe buffet brunch, and beer, wine and sangria for the grown ups.
After months of planning, of soliciting donations, of advertising, Emailing, and distributing flyers, we had exhausted every avenue we knew.
We received so many generous donations that were accompanied by, “I wish I could, but..”
We received so many well-wishes and positive thoughts from genuine people.
But, in the end we were looking at attendance numbers far lower than last year.
We had excellent baskets – Some were gathered by friends and family. Others were given as donations, and many were put together by my loving husband.
Meghan and I wrote out and carefully planned what we wanted to say.
She opted this year to stray from her pattern of creating videos, and she created a Power Point of the year in review instead.
But, as late as that morning the text and phone calls kept coming from people who could not make it.
We walked into the room anxious. Not sure of how the day would go.
We should not have worried.
What this crowd may have lacked in volume they more than made up for in LOVE, SUPPORT, GENEROSITY, and COMPASSION.
They were from all areas of our lives. There were family. There were lots of cousins. There were friends. There were colleagues. There was Meghan’s Physical Therapist, her math teacher, and her former paraprofessional. There were friends of friends. There was Charlie Balloons, and a DJ whose services had been paid by some dear friends as a donation.
There were 42 raffle baskets, and a 50/50. The money generated just from those two things was mind-blowing.
There were 2 schools, PS1 with cousin Kim, and Holy Rosary with our friend Christal, that each raised over $400 at their schools for the cause.
We laughed. We drank. We ate. We talked. Kids danced with balloon creations. There were musical chairs and fun. There was pure love in the room.
When Meghan and I spoke there was silence. Attention. Focus.
Cowden’s Syndrome is understood by this crowd, because of us.
And there stood my daughter, telling this crowd of 100+ that she was tired of “Living with Cowden’s Syndrome.” She “put Cowden’s Syndrome on notice.” She told it, it was time to “keep up with her.” She’s got things to do. Places to go. People to see. She’s growing up right before my eyes.
Not long ago she was a scared and confused 8 year old. Now she is a wise, and mature beyond her years, 13-year-old young woman. She wants the PTEN Foundation to flourish. She wants research, a patient database, and even a cure. She’s 13. There is time to get it right for her, and all the young ones being diagnosed after her. She has drive and ambition.
She chose a song to end her speech. She chose “Let it Go” from Frozen. She toyed around with a few songs, but this is the one that spoke to her, at this moment. This one got to her heart. And you could tell, as she belted it out acapella.
In the end, as people with full bellies, and big smiles, hugged us goodbye, they spoke of “next year.” They said this one was “the best yet.” We felt loved and full of gratitude.
And as we sorted through the finances, we were struck with something amazing. Jeans for Rare Genes 3 would be making a cumulative donation of just over $12,000 to the PTEN Foundation. This love, this event, these people, the generosity of so many, had generated an amazing amount.
Our hearts are full of gratitude.
A donation of over $12,000 to the PTEN Foundation. Because of you.
Thank you for valuing a cause that matters so much to my family. Thank you for loving us. Thank you for supporting us from near and far. Thank you for your never-ending generosity. Thank you for your prayers and good wishes.
I’m not one for New Year’s Resolutions. I don’t believe in waiting for a specific day to make changes. If they are needed, wanted, or warranted – we make them. Right then. Otherwise, I’m all about just being your best you- every day.
Parenting a teenager is tough stuff. Even when your teen is just a good soul, a hard -worker, a good student, and a compassionate human.
There are people who would challenge me that we have it easy. They give me the default model, that raising one child has to be easier than raising 2 or 3 or 4 or 5 or more… And maybe they are right. I will never know. But, they won’t either. That’s the point.
Raising our children, or living our lives is not meant to be a discussion of “harder” or “easier.” There are challenges present in every single scenario that comes to mind when I think of EVERY family I know. In this house we talk a lot. My girl and I, we talk about those other lives we know, and their battles. And we send love and prayers and warm wishes, as they do for us. It’s not a contest, it’s real life.
2016 saw the results of two uterine biopsies of my then 12 and 13 year old, with results that left us uneasy, and in a perpetual state of “cautious waiting.” It also saw me back in surgery, replacing less than 5 year old silicone implants because one had “fallen” And then, it saw my clumsiness as I spent 6 weeks booted with a broken toe.
2016 saw loss in my family, as we mourn Pop, and are readjusting with Grandma in her new living space.
Yet, we made it. We came out with a few bumps and bruises, but we made it.
2016 ended with 8th graders we know taking High School entrance and Scholarship Exams. The next weeks will bring jubilation, laughter, and tears.
Yet, we WILL make it- all of us.
The “To Do” list on the yellow pad to my right is busy. The fundraiser is about a month away and there is lots to be done.
There is also an MRI, a vascular surgeon, an orthopedist, an endocrinologist, and a gastroenterologist for Meghan, as well as Pre-surgical testing, a tentative surgery date, and a breast surgeon follow-up, an oncologist, and an endocrinologist for me. All before February 22. That’s IF no one requires additional testing for anything…
We will fit in the “regular” stuff too, like swimming, and meets, and school projects, and drama… well you know what I mean.
We are working hard to fit Cowden’s Syndrome into our lives, and not to let it RUN our lives. It’s a subtle difference on paper, but a HUGE one in practice.
And when the thought of running a house that contains TWO people with a rare genetic disorder becomes overwhelming – we try to step back and count our blessings. Because at the end of all days, regardless of our struggles, it is good for us, and those around us, if we can remain positive. I’m not saying we’re perfect at it – far from it actually, but it is a goal, and an on-going work in progress.
It came up this week when we were preparing for the fundraiser and talking about social media. Actually, it has come up a bunch of times since the iPhone became attached to her hand almost 3 years ago…
Digital footprint – how are you presented on the internet? What if someone “googled’ your name? Now? 5 years from now? 8 years from now before your job interview? The whole concept of this blog has been discussed in depth. Meghan, whether she likes it or not, at the age of 13 has an identity that is connected to her rare disease. Now, don’t misunderstand me for a minute – a close read would CLEARLY indicate, she is NOT her disease, but she will never have the opportunity to deny the diagnosis. That’s forever, and its important.
What she does with it, well that’s ongoing. She’s made some pretty dynamic choices to date. Sometimes she feels a bit like she has something to prove- so she does.
She’s been asking me for “snapchat” lately, and eventually I’ll give in. But, I’m one of the mean moms who makes her wait. Instagram is plenty to manage for now.
This week Meghan was nominated as “Inspirational Staten Islander of 2016.”
It prompted me to “google” my daughter. So when I type in her name connected to our home town, these are the first links to surface…
And just for good measure, I switched to an image search. These 5 were on the first page…
Meghan in her elementary school with one of her idols- Borough President James OddoAn old one – when Meghan was named “Hero of the Month” by Child Life after an early surgerySI Children’s Museum Achievement Luncheon AwardRare Disease shirts from the PTEN FoundationOne of my most proud – NYS Woman of Distinction, nominated by Senator Lanza in May 2016
And, just to be sure, I even tried Youtube.com, only to find a video made in February 2016
Apparently she has listened, carefully. I don’t know what the future holds for my bright eyed activist. I know she’ll continue to take heat from a few along the way. I also know she’ll find the strength to rise above and press on. Because, that is what we do.
Would she like it is she were named “Inspirational Staten Islander of 2016”? Sure. Will it break her spirit one way or another, absolutely not. Her focus is, “If I win, we could get publicity to help raise money at the fundraiser…”
2017 Event Flyer
If you’ve read this far I’ll tell you what I know about the poll I’ve linked you to below. The voting takes place like a reality TV show. I’m not sure how valid it all is, but there is a week of lots of voting. It ends January 11th at noon. Apparently you can vote many times before it stops you. And then you can vote every hour. So pretty much, if it crosses your mind, and you find Meghan inspirational, save the link and vote whenever it crosses your mind, until your device tells you to stop.
Regardless of the outcome, life will go on. And we will continue on the same missions we’re on right now.
I think I blinked, and the calendar changed from October to December. Some weeks I can do nothing more than plan day by day, because to look too far is overwhelming. But, I “lost” the fall in a beautiful way. I lost it shuffling my girl to places she loves to be, and helping her apply to high schools she is excited about. Four years ago I could not have imagined she could keep this schedule. She battles for it every day and I admire every ounce of her determination. I take nothing for granted, and I know a huge “doctor cycle” is soon to be upon us. Meghan’s appointments begin late this month. Mine will overlap, likely culminating in vocal cord surgery. But, for now, for this moment, I am grateful for this chaos. The hint of “normalcy” is not to be left unappreciated.
Today though, I blocked out some time. Today I needed some time to sit in my office and look around. There are beautiful images on the walls of my office from New York City to Washington state – and places in between. Each is carefully watermarked “Leon G. Thompson,” a process that took my husband countless hours. There are thousands of such images on my laptop and several backup drives. You may have no idea who “Leon G. Thompson” was, but I can tell you these pictures are more valuable to me than any you’d find in a museum. Leon G. Thompson was my father, and these pictures are what he left behind on 12/4/13 when cancer snatched him from us far too soon.
“A Few Good Men,” has been far more than a movie title in my life. I was blessed to have 3 grandfathers that shaped who I am. I am equally blessed to say I have had two fathers mold me into the woman I have become. My Mom’s husband Ken came into our lives when I was a teenager, but he has been, and continues to be an unshakeable source of everything from “fun facts,” to computer tech, to house repair and all things in between. There is a special place for a man who steps into a marriage with 2 teenage daughters in tow, treats them as his own from day one, and never skips a beat.
My father, well… let’s just say the early years were rocky.
What I know now, but I didn’t know then, clarifies a bunch. Dad, a Vietnam veteran came home lost. The earliest years are peppered with memories that don’t leave “the warm fuzzies.” The years after that hold memories of fun visits. Dad would come by sometimes. There were movies, and visits to the park and the zoo. There were restaurants, and exciting novelties. But, there was not consistency. There were chunks of empty time. There was a lot of wondering.
Contact got more steady in the teenage years, especially after my brother was born. There were more visits, and more phone calls. But, history sometimes repeats itself, and there were years that faded away again.
Later, after high school, and probably after college too, there was more. Maybe I was ready. Maybe he was. I’m not sure. But, slowly and carefully, over years, a relationship began to form. By the time I got married, I was able to dance with my Dad, (and Ken, and my Pop :-)) and I will cherish the memory forever.
After my daughter was born, he started showing up more. And I liked it.
Hard times came for Dad, and the restaurant industry finally failed him. And that low for him, was the point our relationship became solid. Nothing happens overnight, but he was here. Close. Interested. Available. He helped pick up Meghan. He came to birthday parties, and dance recitals, and swim meets. He came by for Father’s Day and even celebrated a birthday with us.
It was during that time that he first spoke the words I’d been waiting to hear since the second week of my Abnormal Psychology class in college.
“I have PTSD. Do you know what that is?”
“Yep. I know. (and I exhaled a sigh I’d been holding in for years..) And it all gets better from here Dad.”
He was stunned. He had no idea that his entire adult life spent making poor choices, ducking relationships, and often shying away from those who loved him most, were just a few of the symptoms of PTSD. (Post Traumatic Stress Disorder) He couldn’t imagine that I had already pieced together that unspeakable horror encountered with his Marines in the jungles of Vietnam had impacted, to the point of changing, and really shaping his entire adult life. 13 months in that war, and not a day, a single day, ever went by without it influencing his thoughts and behavior. I was able to pick up from a text-book the reasons why he had shied away from our relationship. I was able to know in my heart that he couldn’t risk expressing his love, showing up, or being truly “present.” But, in that moment, hat moment when he said it THAT is where I got him back.
I can’t say I remember the day. And I may be wrong on the year too. But, it was sometime around 2009. Finally, he was working on his own healing.
And he worked hard.
We spoke more regularly. Once a week usually. Sometimes it was his turn. Most of the time it was mine. As I struggled through raising a chronically ill child, he became my sounding board. He was my confidant of all things. He was where I went to bounce the tough decisions. Because, life had left him a great listener. Raising a child with a rare disease, means often having to make really tough choices alone. When your disease affects only 1 in 200,000 people, experience with it is limited. When Cowden’s Syndrome manifests differently in each of that small number of patients, including myself and my daughter, there is an even lower confidence interval with doctors who often just have no idea by no fault of their own.
It is hard to hear over and over again that a child is ill. Especially, when it is your child, or your grandchild, or one you love so much. I have had to make so many unorthodox medical decisions, that I often just needed someone to hear my thought process, and let me analyze, and over-analyze. I have gone against the doctors to trust an instinct that was strong in my mind and my heart. Dad was the one who could hear it all out. He heard me without speaking. He listened attentively. He offered advice only when I asked, and offered encouragement always. These were not situations where I just needed my ego stroked. These were tough conversations to have, and he never ever shied away from one.
He simply would bring me back to reality. He’d ground me by telling me to use Meghan as my guide. Check on her health, physically and emotionally. Focus. Trust my instincts. Be able to correct wrong decisions whether they are mine or theirs. Still now, three years later I find myself aching for those conversations. She is stronger. She is tougher. She is amazing. But, there are still so many battles to face and so many difficult decisions to make. That’s when I retreat to my office. I sit in his chair, and I look up at the path of snow in central park, or the Washington mountain top, or the waterfall, or the rainbow and I think. I talk the conversation through as if he were here. Because I know he is. I just have to listen really carefully.
Dad told me once that I understood PTSD because Meghan’s medical battles had left me some ways in a similar state to him. When she was younger, and so sick, that perpetual fear of losing her, the hospitalizations, the surgeries, left me with a need to he “hyper” aware all the time. While I could never profess to connect this to the horrors of war, he did. And I think it allowed him to open up with some of his own stories.
Through those years I heard tales from his mouth I had never known. I heard of battles, and losses and names of people, and places. I listened so attentively. Quietly. As he had done for me. Sometimes I even took pen and paper to write down his story. Because I wanted to hang on every word. Because you just never know.
I found out Dad was sick when I made that Friday night phone call in October 2013. His voice sounded a little off and he told me he was in the ICU at the VA Hospital in Brooklyn. When I asked him if anyone knew he said he wasn’t too sure. But, he said, “now you do.” And he laughed, as only he would at that moment.
I got to the hospital the next morning and we went through the details. At that point no one knew anything. Confused doctors was a topic we had spoken about at length.
The 10 weeks that followed were just a long blur. There were about 4 weeks of me forcing his hand to allow me to take him back and forth to his appointments. Sometime after that he admitted he couldn’t drive himself. That was a tough day. I had already called in my sister, and it was time to reach out to my brother in Texas. Family meeting. The “team” assembled.
And through the some of the toughest weeks, I bonded in ways that can never be broken, with a sister I have always had, and a brother who I was getting to know better than I ever had.
Dad was admitted to the VA on Thanksgiving of 2013, and one week later, on December 4th, we were by his side when the angels came to free him. No more suffering. No more PTSD. Pancreatic cancer at age 65.
I dialed his number for months after. I still know it in my heart.
I spent the months after he died cleaning out his apartment. Dad was not a man of many “things.” His iPhone held no Email, and only one photo. “Never want to put too much information in one place,” said the man who in his soul operated always with the mentality of a 19-year-old combat Marine.
As I cleaned I took every single scrap of paper he had ever written on and clipped them together. I laminated them. It was to be the only way we would ever “talk” again. It is Dad’s quotes scattered through this piece.
He loved light. And I guess for a man who had spent so much time fighting the darkness, his love for light made sense.
Dad was, to our family, and friends, a photographer. “Tom” would have a camera around his neck at all times. He took joy out of capturing happiness. He took pleasure at photographing family events, and sharing his photos with everyone. As we sorted through the pictures, in the months and year or so following his death, we saw some incredible images. We sorted out the family shots from the scenery ones. We put up a sharing site for all those family images in case anyone had never seen them. And we protectively shielded his “scenery” images, and carefully watermarked them, and kept great pains to keep them off the internet.
At some point we will organize an art show in his memory. We will print, and sell his treasures. We will find a place to donate any profits that will honor his memory. We will let the world see what he saw. Dad used that camera lens to showcase the light. To view the beauty in the world. Consistently, when I look around I see “Light Through the Lens…” and in doing so I keep his memory alive.
Dad did not leave us rich with money, or objects. He left us rich with visions and memories. The former keeps you satiated for a little while. The latter can keep you fueled forever.
The last gift Dad left for me, was one I did not see coming. In the weeks preceding his death it had become apparent to me that there was a specific incident in Vietnam that clearly should have warranted him a Purple Heart. I gathered data for him, presented the case, and even after denials came in, and he had passed, I kept fighting.
Holly, a treasure in Dad’s life and ours, had held onto a list of names and addresses from a Marine Corps Reunion they had attended many years prior. I reached out to every Marine in that list, and if they were still alive, they reached back. Over 20 of them. 45 years later. I grew up knowing Dad had 7 brothers and a sister. I had no idea of the Marine brothers scattered around the country.
I have had the pleasure of meeting many of them. And this past summer I brought Meghan to meet a few too.
Alan was the first to answer my letter. From West Virginia he called to tell me he remembered crossing time with Dad. He researched the story I told him about the incident. He found it totally credible, and helped me exhaust every option and every appeal to the Department of the Navy. Ultimately that battle was lost on what I call a technicality, but by that time I had a friend and a confidant in Alan, previously a stranger.
My Dad, although not loyal to a particular church, by the time he died had a solid faith in God, forgiveness, and an afterlife.
I do not know the book this came from, but I found this among his clippings…
My Dad in his passing, solidified my relationship with my sister, essentially “gave” me my brother who I had never really “known” but will NEVER let go of, AND, secured for me a confidant in Alan, and gave me the gift of loyalty that Marines save for their own and their families.
He left thousands of photos. Snipits of his own words, and memories of times that we got it right.
I sometimes always wish that he would answer when I called him on the phone. But, I know. I know that he is flying free. And I know, that while he needn’t be saddled with the cares of this world, that he checks in. That he is nearby when I need him the most.
So when we are driving in the car and Meghan snaps a shot of a sunrise, or the light coming through the clouds in the sky. When she sees the beauty of the world around her. When she looks for the good. When she keeps her friends list short and neat, I see my Dad. I feel him. I know he’s right there for that moment.
Courtesy of Meghan on a road trip to WV to meet the Marines. Always being guided by the light…
Only when you love deeply do you feel great loss. They all hurt. The oldest to the newest. I can not change the way I love. When I love it is with my whole self. Otherwise, why?
This one hurts differently because it took so long to get it right. But, I rest with the gratitude that we did get it right. And once you get it right, if it’s truly right, nothing before that matters anymore.
You may never know the strength you gave to help us remain
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….
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
As I sit to write this some time in the middle of the night, I am reminded of the early years, when so many of the middle of the night hours belonged to the two of us. Yes, Meg, I said YEARS.
You struggled my girl, but your determination was evident early, like the day the NICU nurse called you feisty. She was right. And it has proven to be one of your finest and most valuable attributes.
When I look back on pictures of those early years, it doesn’t seem all that bad. I guess I never had time or desire to photograph some of those tear-stained days. And maybe. if it wasn’t for the colicky cry seared into my brain, I might have even come to forget that you considered sleep optional, crying and screaming mandatory, and that carrier pouch a requirement for all things. At one point we had even taken to calling you a kangaroo baby…
You and your tired Mommy!
But, I look at the babies in those pouches, And I think to those mother’s “enjoy it.” You might find this hard to believe my dear, but there is not a single minute I would change or do over. Every step along this journey with you has BEEN the journey. And I have the deepest gratitude that God selected me to be your mother.
The path hasn’t been easy. Sometimes it’s been rocky, and a little unsettled. Other times its been like traveling through fire. On a bicycle. With no handlebars. Backwards. But, I think we’ve all found pieces of ourselves we never knew existed, and there is a family bond between you, and me and Daddy that so many envy. Not for what we’ve done or where we’ve been, but rather the fact that we have done, and continue to do it all together.
At eight years old, you were tossed a diagnosis of a Rare Disorder, a 1 in 200,000 PTEN Mutation called Cowden’s Syndrome, that has leveled many grown adults. But, by eight years old, you were already seasoned at doctors, OT, PT, and speech. You’d been there, and were still doing dome of that. At 8 you were intimately aware of what it meant to spend hours waiting for doctors, and you had a clearer visual of an operating room than anyone should ever have. So really, in reality, that diagnosis just pushed us in the right direction to continue to help you become who you were meant to be.
It’s rotten to be the “unusual one” the one with all the risks and the need for that “hyper-vigilant” surveillance. But, I’m thankful.
See without Dr. Jill to push us to your diagnosis, without all those things falling into place, it’s likely I wouldn’t be here to write this. Your diagnosis led to mine, and while I am intimately connected with the reality there is no guarantee of tomorrow on this earth for any of us, my heart is sure that you, my angel, my gift, you my dear saved my life.
I watch you with each passing year, and the challenges pile on top of themselves. And we both sometimes want to stop the presses and scream, “IT’S NOT FAIR” and the top of our lungs. but then we laugh. “Fair” is just a silly word anyway. It’s not the perspective we use. It’s not worth our time.
You approach this birthday with 17 operating room trips under your belt, and too may ER visits and, tests, and hospitalizations to count. You have had to make decisions, and think thoughts that are beyond the scope of what you should contend with. But with grace and dignity you proceed, because none of that is what defines who you are.
Grace. Poise. Strength under pressure.
Despite unimaginable pain, you press on. Your body would not allow for dancing school or soccer. But the competitor in you was not to be silenced. Running was out of the question, so now you “fly,” in the water, 11 months a year 4-5 days a week for hours. You pull energy out of the crevices of your toes to push through when most would curl up and give up.
First season swimming, a few weeks in. Spring 2013 2016 Working on your “fly”
You press on in the community, focused to raise the necessary founds the PTEN foundation will need to create our patient database. But, you will not turn your back on the charity where you began, Global Genes, “for the babies who can’t speak for themselves,” you tell me. You make flyers, select venues, advertise and collect raffles. You speak at schools and organizations across the Island who will have you, to raise awareness that rare diseases are everywhere. For the last 2 Februaries we have celebrated Rare Disease Day with almost 200 people, gathered because you have a mission.
Youngest “Woman of Distinction” recognized in Albany by Senator Lanza in May. Proudest parents.
I watch you talk to people and I swell with pride. When you’re intermittently stuck in that wheelchair you hate, you decided to help the doubters, the starers and those passing judgment. A simple business card with a phrase you helped create “Cowden’s Syndrome – Rare. Invisible. Real.” It starts a conversation, or it ends the behavior. Either way you manage with grace to rise above.
You take the high road so many times a day. I know it’s not easy. And I know there are people in your path every minute determined not to make it easy. But, truth be told, as we are learning, there are others out there. There are real people, at swimming, at youth group, at SICTA. There are real people who are finally recognizing that you are pretty spectacular. And I don’t mean that in a ‘who is better than who’ way. I mean it in it’s best sense. Everyone is spectacular in some way. You just learned it a little early.
As you turn 13 this week, I wish you so many things, from the depths of my heart and soul;
*Never lose the magic. Ever.
ALWAYS remember THAT feeling.
*Never compromise yourself for anyone. Remember that doesn’t mean to be brick wall stubborn. It means to keep those morals. Rise above.
*Always remember no matter how wild and crazy the world gets, you’ve got two parents who will love you regardless… and that is a PROMISE.
*Smile, sing, laugh, act, dance, be sarcastic, and sensitive, and guarded and silly, with a healthy touch of humor thrown in. Do it all always with respect.
*Continue to constantly take every obstacle tossed at you, and it toss it back, or walk past it and move on. When they tell you you can’t, find a way to show them you can.
*Never let anyone make you feel less than. You, you are enough. You are always enough. God said so, and He is smarter. Trust.
*”Be the change you wish to see in the word.” – Ghandi
Your teenage years will be a giant path of self-discovery. It won’t always be smooth. But nothing is.
Be you, and it will fall into place. And in the off chance that none of that works, I’m not going anywhere.
I love you from the bottom of my heart. You truly are the child I was meant to have, and there is NO ONE I’d rather be #beatingcowdens with, than YOU!
Happy 13th Birthday! You will always remain, “My Most Thankful Thing!”
I love you ALWAYS,
Mom
Thanks for bringing out the best in me. I love you more than you know.
It took me over a week to actually wrap my head around this one.
The summer is not just time for Meghan to get checked and cleaned up, it’s time for me too. And this summer I tracked down a new doctor.
Sometime around the end of April my voice started to bother me. I was getting hoarse easily. I explained it away as allergies, season change, dust, “I must be getting sick,” and everything else I could think of. Except it bothered me. And that creepy voice that sneaks in sometimes to remind me that my body has already betrayed itself once, started to take hold.
After almost 20 years of teaching, and never ever struggling to use my “teacher voice,” I couldn’t project. Simultaneously with the pain in my right implant, and the nodule being watched on the remnants of my thyroid, it started to get in my head.
I went to my primary doctor, and wasted several hours to get nothing that resembled an answer. They suggested a thyroid sonogram. I never went back.
I started researching ENTs locally. I found very few who took my insurance, and fewer who seemed to have any voice experience.
I turned to the internet and found a voice specialist at a facility I trust in NYC.
I don’t really know what I expected from the exam. I filled out the preliminary papers, and gave the basic Cowden’s rundown. They did a few tests externally with a microphone, and another with a camera in my nose. Not pleasant, but incredibly informative.
And there on the screen was a “benign appearing” nodule on the side of my vocal cords, causing them to briefly lock together when I make certain sounds. Fascinating. But bothersome all the same.
Not mine, but they looked a lot like this.
They reassured me several times that the nodules were “benign appearing.” I appreciated that, but reminded them many of my scars are from “benign, and benign appearing” growths. I asked about the prevalence, and if it was linked to my Cowden’s Syndrome. I got a very definitive, “Maybe, or maybe not.” These nodules occur in the general population, they can be caused by overuse, but what had me perplexed was the problem seemed to start when I did the LEAST amount of teaching for the year. I was out of my program for quite an extended time between spring testing and other professional obligations. So, why now?
And, what to do? September is looming, and my life will be in the classroom many hours a day. I need my silly voice, my sing-song voice, my stern voice, my loud voice, my quiet voice, and my serious voice. Elementary school students expect, and deserve nothing less.
I was given a number for a “voice therapist.” And as of now my voice is getting a workout leaving messages for her. I asked the doctor what are the chances this “voice therapy” could control the nodules. He told me it “couldn’t hurt.” I asked if this was like giving me compression hose for my horrendous veins? Is it going to be a situation where voice therapy delays an inevitable surgery? Because any scar tissue on my vocal cords seems scarier than the painful legs I’ve contended with for years.
The answer is, there is none. I will persist and connect with this voice therapist. I will hear her out and try my best. And in 4 months or so I will follow-up with the doctor to evaluate. That is assuming the fall semester goes off without incident, and all my new students can hear me loudly and clearly.
For now, I’m using mostly the quiet voice. Often mumbling to myself. Because whether this is Cowden’s related or not, the whole “growing things” in my body is incredibly old.
Watch. Wait. Check. Recheck. Remove if necessary. That’s how we roll.
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!)
Sometimes that’s the best way I can think to describe it. There are days, so many days, when it’s like a sucker punch that takes your breath away. It’s not going to knock you to the floor. You’re stronger than that. But, man, it knocks the wind out of you.
First, it’s the drive. The traffic. The hours spent headed to the appointment.
Then it’s the “hurry up and wait,” as you strive to be there for your 2PM appointment that COULD NOT be changed to later. Only to wait until after 3 in the waiting room.
After that it’s the news. No matter what the appointment is, a Cowden’s Syndrome appointment rarely ends with overwhelming optimism. Well, because they are all so unsure. So they are afraid. And I get it. But, then they tell you the parts they DO know, and you sometimes just want to sit in the corner and bang your head.
THEN after all that GOOD fun, is the drive home.
Usually all in all about 5 hours roundtrip. Whether it’s Manhattan or Long Island it doesn’t really matter. It’s 5 hours at a clip that you’ll never see again. Plus hours and hours analyzing…
About the only GOOD thing that comes from all these is the time spent chatting in the car. Because my kid is pretty cool, and I enjoy her company. I just wish we had more time to be together, at the beach, or a concert, or somewhere fun…
Today it was the orthopedist. He operated on Meghan’s knee in May of 2015. It was the 6th surgery on that knee, all ramifications of a pesky AVM (arteriovenous malformation) wedged somewhere under the meniscus. After the surgery there was PT, then a 6 month follow-up.
In November he released her from PT, and asked for another 6 months. In April he was so bothered by what he saw he brought us back in 2 months. He was troubled by her muscle spasms, and her generally being unwell. The conversation that day led us back to the hormone she was on after the December d&c, the one with the precancerous cellular changes. The medicine that was supposed to help keep the uterus in check. The medicine that seemed to come up an awful lot in April as the source of many problems. We labored over the decision and consulted almost every doctor, but ultimately decided to ditch the medicine and hope for the best.
Today the muscle spasms were gone. Evidence that they were caused by the hormone.
But, there was another pile of information to digest.
Sometimes it’s so hard, because you ask questions, and you just don’t always get the answers you want.
What about that right leg, will it ever match the left in strength? Do you think the foot will catch up?
No, it’s not likely.
Impact activities, even walking over a half mile, cause knee pain. Will this ever resolve? Can she do anything to help it resolve?
No.
So, what do we do when we have to walk far distances?
A wheelchair.
And the conversation continued like that. He is actually quite well spoken, but today his words hurt.
He is a good doctor, a good surgeon too. But, he is honest. Necessary, And painful.
We got some suggestions for strengthening. And a script for a refresher with our favorite PT. Progress will happen. It will just be slower. It will take longer, and harder work than any of her peers.
We don’t use the word fair anymore. It’s all relative. Nothing is really “fair.” But, some days it’s harder to find the bright side than others.
Some days, even when the doctor tells you it’s not right that someone your age should have so many limitations, it doesn’t make it any easier to hear.
Because the reality is what it is. There is both gratitude and pain in the mobility she has. Her drive, her focus, extends beyond limitations. She wants to be free.
Yet, somehow even on the toughest days, I have solace that there is a plan. And it will continue to unfold for both of us.
Tonight we recover from a few sucker punches with chocolate cookies and coconut milk ice cream. Tonight is not for the bright side.
Tomorrow will be different. Tomorrow is school. Full of people who do not know, or who are virtually unaffected by the realities of Cowden’s Syndrome. And tomorrow is drama. And tomorrow is swimming. Tomorrow will be too busy not to press on.
Tomorrow will be for working on ways to keep moving forward.
beatingcowdens 