If you were with us at “Jeans for Rare Genes” you heard me announce we had received a grant for $2500 from the Richmond County Savings Foundation.
This story Inspirational Staten Islander to host Fund Raiser ran on February 4th. On February 8th I was contacted by the Richmond County Savings Foundation. The story had been read, and it was suggested we apply for a grant on behalf of the PTEN Foundation.
We are relatively new to the fundraising thing, but with a lot of help, we got on track and completed the application. The PTEN Foundation President, Kristen, spoke with them to get the 501c3 papers squared away. And – about 10 days later we were notified of a $2500 grant, awarded to the PTEN Foundation!
We included the grant money in all our fundraising totals for the event, but today we got to go to the office to receive the check. We got to meet Mr. Cesar Claro, who noticed Meghan’s story. We got to meet Ms. DeSapio who helped us so much via phone and Email.
Meghan took the day off from school, because my speaking time is so limited, and because she’s the reason all this happens anyway. It was just right for her to be there.
We gathered in a conference room with about 10 incredibly inspirational people. I loved how professional, yet casual the whole experience was. Amounts of grants were not discussed. Checks were distributed in sealed envelopes, but first , everyone spoke about why they were there and how the grant was going to help.
Meghan spoke a little about Cowden’s Syndrome, and how we are hoping the PTEN Foundation will be able to inspire research on our disorder. She did great, as usual.
We got to hear from a teacher, and his school’s work with Habitat for Humanity. We heard from “Metropolitan Fire” and how the grant would help their organization.
We got to meet Dennis McKeon From Where To Turn, and hear about the work his organization does on Staten Island.
We heard about the Moravian Church garden and their donations of food.
We met a few other incredible folks as well, one whose organization was obtaining deeds to local neglected cemeteries so they could be maintained. In the absence of pen and paper a few are slipping my mind, but it was a fantastic experience. It was an intense 45 minutes!
Perhaps the one that touched our hearts most was Mr. Capolongo who spoke of his son Michael with Duchenne Muscular Dystrophy. If you are not familiar with the genetic disorder, you can get some information here. Duchenne Muscular Dystrophy It is a genetic disorder affecting about 1 in 3,500 boys. The body lack dystrophin, and without it muscle cells become damaged and weaken. It is progressive. Michael is 11. They have 2 other healthy children. They are a family like ours. Dad is a policeman, mom is a nurse and a breast cancer survivor. Yet, they have managed to create a not for profit, Michael’s Cause and have raised a million dollars to help fund research, and hopefully, ultimately a cure.
In the 30 minutes we sat across a table I felt inspired, and connected. I respect so much the positive outlook, and the awareness that even in strife, others have it worse. I respected the acknowledgement that every day is a gift, and life can change your perspective quickly. These are things we identify with in this house. Those are principles we live by.
Meghan and I often feel a little more “at home” in the presence of others with rare disease. While they are all so drastically different, the difficulty, the fear, the unknown, the isolation, they all overlap. And what also overlaps are your decisions in how to handle them.
I was reminded of my own girl, at the age of nine telling NY1 that. “You have a choice, you can get angry or you can DO something.” And, “I feel like I was put here to DO something.” Watch this clip and reminisce with me.
Today we were full of gratitude. Today we were inspired by others. Today we were reminded of our own mission. Today was a continuation of an ongoing goal, and a reminder that it matters. It all matters.
Irony is spending 20 years wondering why your students sometimes struggle to be quiet, and suddenly, in one week, realizing how insanely difficult it is to be silent, AND, that it’s likely your need to talk constantly is part of the reason WHY you went into teaching in the first place!
Last Friday, March 3rd, this ugly thing was taken off my vocal cords.
Before – 3/3/17
And they, like so many other parts of my body, now boast scars.
After 3/3/17
So, I set up for a few weeks out of work, and a week of required silence. I never actually thought I was ready, which is a good thing. Because I wasn’t.
I do poorly on twitter, Rarely could I get out what I need in 140 characters or less. Absolute silence involved my cell phone in hand at all times. A few times the thing almost learned to fly, as the fingers, and auto-correct could not keep up with my brain. But, life lesson number, oh, I don’t know, 4 or 5, teaches us that life goes on around us. Ready or not. Even when you have to watch and not participate.
There have been many times since March 3rd I’ve been grateful that thought bubbles do not appear above my head.
On the 9th I headed to the city for my follow-up. After learning the pathology was benign, and read only “polyp,” I was relieved. The doctor was pleased with the initial healing and told me I could begin to use my voice. Slowly. He said 5 minutes an hour. That sounded high, based on what the voice therapist had told me in the fall, but I was grateful. I used the first 5 minutes up asking him questions.
I wanted to know whether this was connected to Cowden’s Syndrome. I wanted to know if it was likely to recur, if I needed vocal therapy, and when my follow-up would be.
Apparently, kind as he is, he could communicate on Twitter much more efficiently than I.
Cowden’s Syndrome? I don’t know. There’s not a lot of literature. This type of polyp is usually a traumatic event, something you’d remember. But, you don’t. And it grew really fast. I’m not sure.
Recurrence? Maybe. Depends how it came to be. Be careful with your voice.
Vocal Therapy? Suggested. Start on the 13th. (Whew… THAT I now KNEW I needed.)
Follow up – April 13th, a few days before I am scheduled to teach my first class post-operatively.
He was an outstanding surgeon. Matter-of-fact. Thorough. Efficient. But, I’ve known enough surgeons now to know, they don’t play with why. They just fix it and move on. He will “doctor” me, to the point that he will follow-up, and hopefully watch NOTHING ever grow there again. But, in reality this is now just another vulnerable spot on this PTEN mutated body. Because, I would stake certainty that it’s connected. There just aren’t that many coincidences in life.
So I left Thursday feeling good. I got 5 minutes an hour! I tried out my voice in the car. I tried it out at home. And then, I picked up my daughter at school, and I was so excited to talk to her, I easily let the conversation surpass 15 minutes. oops.
Later when I spoke to my husband I was well past 10 before I stopped.
This 5 minutes and hour thing was not for the faint of heart!
Sometime Friday I decided that stopping at 5 minutes was, nearly impossible for me to regulate. It was quite possible I could lose my mind.
And then I texted the voice therapist to set up my appointments for this week. And I mentioned the 5 minutes. And that I randomly out of nowhere had vomited for 20 minutes that morning. And her words were crystal clear. “DO NOT SPEAK AGAIN UNTIL I SEE YOU”
Sucker Punch
I went from a poorly managed 5 minutes back to a feeble attempt at silence.
I failed.
I spent 2 full days at a swim meet at with my girl. 7 hours each day away from home. I got to rest my voice, except when I felt compelled to tell her how proud I was. Or to wish her luck. Or to just chat… a little.
Some people really love chocolate. Me, I don’t mind chocolate, but I LOVE to talk.
We sat in therapy today and I got exercises for volume and pitch… all ironic because I struggle to tell the difference, but I’m an overachiever, so I try to do well. I sound like a complete loser, but I imagine it’s the same as me attempting something that requires coordination, like kick-boxing, or yoga. My poor vocal cords may not stand a chance.
6 exercises, 5 times each. Repeat 4x a day. And during those 4 hours DON’T SPEAK at all.
The revised schedule she gave me had 3 minutes an hour till Friday. Then, we’ll entertain 5 minutes again.
Tonight I pulled back into my office. To be silent I must be alone. I put some “breathe” into my diffuser, and tried to get my thoughts together.
Then I realized they ARE together. I just have no place to put them.
Tomorrow the house will be full for the snow day. Normally this would make me very happy. Tomorrow it is likely to make me a hermit.
Grateful the voice works. Grateful I tend to heal well…. But, some days
I always hated charades. I stunk at it. And I still do.
I would have made a rotten mime.
Forced down time.
That’s what surgery brings.
This time it brings silence as well- for at least the next 5 days.
I kept moving so fast through the last few months that maybe I chose to ignore the problem growing inside me. I mean, ignore it in the sense of not writing about it too often. Of course, I’m not foolish enough to ignore it…
It was last spring, right about this time that I started to feel a little hoarse. I blamed it on spring allergies. Except it never went away.
It always struck me as odd because it came at a time during the year I was teaching less, and testing more so there was less of a strain on my voice.
Once spring turned into summer, I had to accept “spring allergies” wouldn’t work.
I searched for an Ear, Nose and Throat doctor in Manhattan, in my network. I read bios, and surgical articles, because everything seems to end with surgery anyway. So – I find its best to pick a good surgical record to start. Negative, or realistic? You can decide for yourself.
The first appointment I met the speech pathologist and the doctor. Both took baseline screens. I was told at initial consult in July that there was a “nodule” and a “striking zone lesion” on the opposite side. I was told it did not seem “typical” of the nodules teachers usually get, and I was told at that initial visit I would likely need surgery in the future.
Healthy image
But, first I was sent to vocal therapy. And while I scoffed at the idea, I know now how valuable the experience was. I have always sent my daughter to therapy when needed, and marveled at the success I saw with OT, PT, and Speech. But somehow for me, it was a tougher pill to swallow. At first.
I think when I wrote about this last I had connected with the Vocal Therapist, a gem of a woman, and a skilled class act in Speechless – October 2016 And then there was a quick entry here Laugh Out Loud – November 2016, Basically, the therapy helped enough to reduce the swelling, and reveal more issues. In October I was told definitively that surgery was in the future plan. I was told to continue to practice what I had learned in vocal therapy. I was told to rest my voice when I wasn’t teaching, and to employ a slew of new speech strategies and exercises. I continued Vocal Therapy through December. It has been no easy task, and I am FAR from perfect at it, but I can say I’ve made improvements at least a third of the time. Not too bad for a few months of modifying something I’ve been doing for 42 years!
The kids at school are used to my “tour guide” microphone, which helps me resist the urge to overextend my voice. We got in a routine, as you do when faced with a new obstacle. There is no other choice really, because as my friend says, we just “keep swimming.”
The plan was for me to return to the doctor in early April to set up surgery for the summer.
Except plans change. And it was getting a little hard to breathe. I felt like I had asthma symptoms more often than I am used to, and almost like a constant feeling of fullness in my throat.
I called the doctor to move the surgery up. We set February 20th as the date. Sometimes I just have to trust my instincts. Except I got a call that the OR was closed on February 20th and I had to take either February 17th or wait till March 3rd. And for a hot couple of moments I entertained February 17th. Except that “Jeans for Rare Genes 3” was set for February 19th. And, me being on total vocal rest while we entertained 120 people wasn’t a great idea.
January 31, 2017
I headed to see the doctor on January 31st and he found a new problem. There was now a very large polyp extending over the vocal cords. It was big and it had not been there in October. I asked about the likelihood of it being benign and I was told he was 99% sure it was all benign. I liked the odds, but still he agreed waiting till the summer wasn’t a great plan. We settled on a surgical date of March 3rd. Carefully calculating the number of days I’d need to be off of work before my return, we established it should still work.
Over the last few weeks I felt increasingly short of breath during mundane tasks. I stayed calm. I decreased my daily activity and moved a little slower. I knew we could make it, and we did.
So, “Jeans for Rare Genes 3,” went off as a successful event, and yesterday morning, on the first anniversary of the death of my beloved Pop, I headed to NYU to have my surgery. I left with the prayers of great friends and family, and the intense protection of one of my Guardian Angels.
The surgery went as surgery does. It’s strange how it’s not nearly as anxiety provoking as it once was. The whole routine has a wild familiarity, from the intake to the recovery room. I don’t get lost anymore and anticipate their words and requests. It’s odd, and a bit strange this job of #beatingcowdens. I walk dutifully to the OR and get settled under my warm blankets. I expect the IV, and the burning of the anesthesia. I know the mask will be the last thing I remember before the recovery room.
And its amazingly less nerve wracking when the surgery is for you and not your child.
So the biggest polyp had increased drastically in size since January 31st. It’s gone, and so are the other issues. We wait on pathology and a follow-up next Thursday. I’m on strict voice rest until Thursday at least, which requires me to really isolate. Talking to my family is reflex. And as I said before I stink at charades.
Before – 3/3/17After 3/3/17
So we carry our phones. I put my fitbit on rest. It’s off an in a drawer. I’ve got my laptop in my room. I’m eating my Isagenix and diffusing protective oils. I’m organizing my brain- a little.
I’m trying not to get ahead of myself. I’m trying to address one day at a time. This is not my strength. It is in my long term planning that I strengthen my resolve and focus best on
#beatingcowdens.
For now it’s been about a day. I slipped on about 20 words total. Not great, but I never claimed to be perfect. The funny thing about talking is you don’t realize how much you do it till you can’t.
The laughing is even harder. My husband is funny. It’s one of the things I love most about him. How lucky and I as I heal to lament that my daughter wants to talk to me, and my husband makes me laugh? I’ll hide from my biggest blessings a few more days. #gratitude
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
Meghan loves to swim. I mean, athletically it wasn’t where she started, but the knees. Six surgeries on the right knee, and there was to be no more soccer, and no more dance. After the 6th one, there was to be even no more breaststroke. There is no gym class in school. There is limited walking. There is one foot, a size bigger than the other. The “off sides” that that creates in her body can be quite painful. But, the pool…
Oh, how my girl loves the pool. She is an athlete. She is a competitor. And the pool allows her to be both of those things to the best of her ability.
For the 3rd time in the 4th year since joining swimming, this September brought a new coach for her, and a new group of teammates. There was anxiety about the switch on so many levels. But, as we always say, life has a funny way of working out.
This coach is a perfect fit for her. They practice hard, and often. He is structured, and firm. But he is compassionate, and constructive. He watches. There are sometimes 50 or more swimmers in the pool when he coaches, and I swear he does his best to make some comment to each of them every practice. And, after they compete, his feedback always connects to practice.
And practice, for Meghan, has not been a problem. While maintaining a “Pupil Path” account that no one could ever critique, and planning a major fundraiser, and looking for high schools, and managing doctors appointments, and a mom who doesn’t feel quite herself, this girl has, most weeks, attended practice, Monday, Thursday and Friday afternoon, as well as Tuesday, Friday, and Sunday morning. Quite literally, swimming is good for her health.
Swimming can be a very solitary sport. It takes a good deal of mental toughness to stare at a black line for hours. Interactions with teammates on deck or during dryland (out of water training) are cherished.
Even then, as the “new kid” in the group, you can sometimes wonder about the relationships. Meghan has been very careful not to share too much of her Cowden’s story with these swimmers. She wants to be viewed as one of them, and she is doing a good job holding her own, all by herself.
And then there was today. We were at a meet and she was scheduled to swim the 200 yard butterfly. If you swim, no explanation is needed. If you don’t let me give you a frame of reference. For the group she swam with today, 72 girls swam the 100 yard freestyle. 10 signed up to swim the 200 yard butterfly. It is not an event for the faint of heart.
Meghan feared disappointing, herself, her coach. me. She was scared out of her mind. So scared that it was out of character. Out of character for a child that has had 17 surgeries, and countless tests. ER visits, and hospitalizations. She was that scared.
And as the race approached I watched helplessly from the stands as she began to unravel. And I watched with a grateful heart as teammates picked her up and put her back together again.
The one who I can only say was acting as my angel, talked her right onto the block. It only took a second of my attempt to video the race to see that something was terribly wrong. There sat her goggles, first mid face, then in her mouth occluding her breathing. In butterfly you can not break stroke. At the end of the first 50 she stopped. She was done.
My heart sank, and ached for her. I wanted to pick her up and hug her, and take her back to the rocking chair I used to use when she was a baby. But she’s 13 now – so I could only watch.
The official came to her and asked if she wanted to try again in the next heat. There were 2 lanes open. She said yes. And as they placed her in one heat, her friend, my angel, came to the official and asked if Meghan could swim, “in the lane next to me.” She said yes, and as Meghan barely got settled on the block, another teammate flagged the official to wait a moment. Meghan’s goggles were still not on.
The start went fine this time. The goggles stayed on. And she did it. The whole thing.
By the time she got to her last 2 laps, most of the other girls were finishing. But, then there was more magic. There was cheering, from her teammates and strangers alike. There was a push for her to get finished, to press on, and to make it. So, she did.
I think I cried the last two laps. I was struck by this child of mine, her life, the adversity, and the stubbornness. The ability to not give up. The desire to be normal, and to succeed. And as she touched the wall her team mate, that same angel, swam right into her lane and gave her the biggest, most genuine hug.
She did it.
Not too shabby for the first time. And more than one teammate whom she respects greatly told her they gave her credit for getting up and trying it again. So did her coach.
Meghan isn’t the “cool” kid. She sometimes struggles a little. But, she remains true to herself at all times.
Today, she got to see the kindness in others. It was pure. It was genuine. It was unsolicited. It was the best kind.
13-18 year olds can be a tough group. But these kids showed today that when they are left at their “default” setting, when they are alone and see soemone hurting, they will choose kindness and compassion.
She is asleep. Tomorrow is another day of swimming. But, those events won’t cause this angst.
Gratitude fills my heart, that once again even at the toughest moment, good shines through.
And as she said goodnight, she told me, “Next month, when I swim the 200 fly…”
We use the phrase all the time. Anyone who texts or uses any social media understands LOL. But, today I got a more clear explanation of why it’s essential.
At Voice Therapy this morning we talked about “habits,” things I may be doing without realizing it to strain my voice.
I was told that both laughing and crying can be damaging.
Crap. I’m screwed. Laughing and crying are things I do- often.
But, she explained. Laughing, or rather “fake laughing” when you hold it in your throat is stressful and damaging. When you laugh, you should laugh full and from your belly. You should, for lack of a better phrase, “Laugh Out Loud.”
Well, ok. This I can do. My husband cracks me up. I mean most of the laughing I do in my world originates from him. And it’s the kind of laughing that’s so loud and clear that I often find myself praying there is no belt on my jeans. This laughing is just fine.
The laughing that is no good, is the fake laughing. Go ahead, try it. When you want to make believe you think something is funny and what comes out is a huge fake smile and a small throaty chuckle. This is no good. And you know what? I’m ok with that. Laughs, like anything else should be real. If I must be social, a smile will do.
I was also cautioned that crying can be damaging. This one worried me. I am not a depressed soul, but the way I stay sane is to live my emotions. I cry- when I am thrilled, nervous, sad, worried, happy, and other times too. This I could not give up. But I breathed easier when she explained. The crying we hold in, is the damaging kind. It ends up getting stuck in your throat and causing all sorts of problems. However, if you cry, and let it all out – it’s just fine. Makes sense really.
Live – out loud. Laugh out loud. Cry out loud. Don’t hold it in. I’m quite sure to do so damages more than your vocal cords.
Getting up early on Saturday bothers me a lot less. I like her. She makes sense. Good voice and life advice over a cup of tea.
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….
** Finding the balance has been a real struggle of late. This has been in my drafts for 10 days…**
I’m writing from the floor in the hallway of the college gym. Meghan’s swim team practices below. For hours. One day I will be able to drop her off and get a few things done. But, not yet. Not now.
I sit in the hall, out of view of my girl underneath. Out of view of her coaches who undoubtedly must think me paranoid. There isn’t another parent here. These are the big kids- 8th through 12th grade. And I’m not here because I don’t trust her. Quite the opposite. I sit here for the unpredictable. For the moments that take us from 0 to 180 in the blink of an eye. And even as I recognize that emergencies happen to anyone. At any time. I am here. Because history, track record, can not be erased or forgotten. I will pull away, slowly.
In the mean time I FINALLY got all my classes together, up and running, and pretty organized. Formative assessment is in place. Lessons are polished up, and I can take the 50 minutes each week that I see the 575 or so chilren as seriously as I like to.
Which is timely because it fell right into High School application season. Yes, season. 30 years ago this was not even a process. Now it’s an ordeal. These are tests to take for every type of school one is interested in. There are then scholarship tests to try to pay for the non- public ones. Open houses, “shadowing” appointments, where she goes to the school for the day to “see.”
This all seems to culminate by some time in December and then be followed by 2 months of waiting. It’s amazing how much “hurry up and wait” there really is.
And I am left to sit here. Quietly. I will her body to do as she wants. I that the right high school for her, is the one she attends. And, I watch as 8th grade starts to pass by.
Your experiences shape you. Your disease doesn’t define you. But, in our case it provides, stamina, endurance. tenacity, grit, and a tendency to want to over-achieve. Not a terrible list of negatives.
“Normal” is a relative term, constantly changing. When we are on the brink of better health, we sometimes find ourselves guilty of waiting for the other shoe to drop. We are often guarded and on the defensive. It’s hard not to be.
This past month a former student buried his mother and father 2 weeks apart. He is Meghan’s age, and while he had step-siblings, he was the only child of his parents. I haven’t had him out of my mind much.
These warnings, these screenings, these appointments, these surgeries, at times leave me down. But, not for long. We’ve been ordered to be vigilant.
There are no promises.
Today bleeds into tomorrow. September just about swallowed up October. And October seems hungry for November.
Stop. Or at least pause. Enjoy the process, no matter how tedious or taunting it may seem.
Hug your family. Call your friends. Even if it’s only for 5 minutes. Send a text. Stay in touch.
So, the night I was recovering from my breast surgery on August 19th, I haphazardly checked my Email.
There sat an Email from Meghan’s endocrinologist that shook me out of my anesthesia recovery pretty quickly. There is no time “in between” because there is usually SOMETHING going on. Overlap is a way of life.
Meghan had had lab work drawn the 3rd of August. Routine thyroid labs, and some tests from the gyn worked in. On the 18th the EMail from the gyn told me she was suspicious of a few lingering “issues” and we would address them at her late fall appointment.
The endocrinologist’s EMail said he was concerned about the resurgence of her “thyroglobulin” levels. He wanted to now treat her as a “high risk” thyroid cancer patient.
I almost dropped the phone, alone in my dark room. The last paragraph said he’d be on vacation for two weeks, and we could talk when he returned. I read. And I reread.
Decoding step by step – “thyroglobulin” is created solely by thyroid tissue. Someone with a complete thryoidectomy would have non-detectable levels about 3 or so months post operatively. Only thyroid tissue generates thyroglobulin. If some was left behind after her surgery a small number would have stabilized early. But for it to be gone, and then show up… This meant there had to be regrowth. And yes, it happens. Maybe to everyone, but definitely people with Cowden’s Syndrome. We regrow lymphoid tissue.
It’s a superpower of sorts. Except instead of being a really fun, save the world, or generate sunshine and happiness, superpower, it’s more of the – hey let’s add some more worry to your life superpower.
While the pathology on the thyroidectomy was totally benign, the mind can play lots of tricks. Lots of tricks.
I’m not slow. I am pretty well read. I’m equipped with the knowledge that having faith and worry are counterintuitive. Except I’m honest. And with matter of my girl, worry sometimes overwhelms. I never claimed to be perfect.
So I spent the last 6 or 7 weeks retreating. I barely spoke of this fear, this nagging thought that not only could the thyroid be growing again, but what if… what if all those precancerous things that we took out with it were somehow festering.
I made it my job to access the lab work. And it was a JOB. You would have thought what I was asking for just to see a list of messed up thyroid numbers. We live in a pretty crazy society. But, finally, after 2 weeks of labor, and getting increasingly vocal, I received 4 copies. All on different days. All from different people. But, I got to look at the numbers.
I am a numbers person, so I took some relief in the thyroglobulin being only 3. Undetectable was better, but 3 was on the better end of things. It was clearly well under that “10” I had found. So I took to waiting and ticking away the days until the next blood test. There was a thyroid dose change, and 6 weeks.
I broke my toe while recovering from the implant exchange, a few weeks after learning I was suffering not only from a single vocal cord lesion, but vocal atrophy secondary to premature aging, the latter which was likely due to the hysterectomy that became necessary after the breast cancer diagnosis in 2012.
And yes, I meant that to be a run-on.
It all kept me as occupied as I could while I hid in the start up chaos of September. I hate September. But, when you’re suffering personal angst and need cover under which to hide – it’s September for the win. I poured myself into setting up 25 classes, and over 550 students, logistically, and academically. It took some time.
And I kind of just ducked. Phone calls, texts… I played along.
“High Risk” thyroid cancer patient… like a recurring nightmare.
One of the reasons I was afraid to talk was the fear that someone would talk to be about thryoid cancer being the “best” cancer. Please, no one ever do that. When it comes to my child, a survival rate in the 90%s doesn’t soothe me. When it comes to my child, I, like every other parent want 100%. Nothing less.
I was scared.
We got the labs drawn at the hospital on Weds. the 28th.
On the 30th I was exploding. Every second seemed like an hour. Every scenario was playing through my head. So when I got the call that the test wouldn’t be ready till Monday I dissolved into a tiny puddle.
And then I did what every other mother does. I put on my big girl pants and got through the weekend.
Then Monday there was a brief phone call.
The thyroglobulin has returned to undetectable.
WHAT? How does that even happen? I sent out a million questions rapid fire. Most of them had no answer.
Crisis averted. Prayers answered.
I explained to Meghan why her Mom had been a bit extra on edge. She’s really growing up because she was grateful to have not traveled that mental journey with me, and appreciated me letting her in when it mattered.
Next blood test November 11. And we’re going with the theory that the thyroglobulin was a one time deal. An error. A miracle. Whatever. A win.
We’ve got 6 weeks. Some Mommy doctors. Some swim meets. 6 weeks. Sometimes that feels short. Right now it’s blissfully long.
beatingcowdens 