The day after Christmas in our house is reserved for a blissful amount of peaceful rest. A few loads of laundry, a simple meal, late sleeping, playing with some new “toys,” recovery, and reflection fill the hours. It is a wonderful, necessary day to pause and recharge.
I am awestruck by how fast days blend into weeks, and months, and even years. My girl is now a young lady. A young lady of 13 years old with the fall devoted to High School Applications, academic honors, hours of swimming, and some drama (class) thrown in for good measure. It was a crazy season, but a remarkable, beautiful time of transformation.
I don’t get time to write as much as I used to. But, truthfully, you don’t need to hear from me all that often to follow along. The writing remains my way to sort out life. I feel fortunate that so many of you come along for the ride.
So much of our journey #beatingcowdens is couched in perspective. We talk so much about the realities of everyone’s life. We talk about the things people endure that we can not fathom, and we talk about how hard it is to have some of the conversations necessary in the life of my 13-year-old. We talk. Often. And perhaps that is the first of many blessing I have.
My girl has become a young woman through a path that is different from most her age. Notice, I deliberately chose the word “different” as we are careful not to measure things in “better” or “worse.” The medical drama unfolded at a fast, furious pace, most concentrated in the years from 8 to 12. And we held fast through each one, but then, slowly, the dramas began to slow down.
At first we didn’t want to say anything. There is the fear of “jinxing” the situation. When medical drama is your “normal” you don’t really know how to live any other way. It sounds bizarre. You want so desperately to be rid of it, but the relief of losing it would be so intense, that to relax and then have it hit you again could be crushing. So you stay on your guard. All the time. But sometimes when you do that you can get a little… I don’t know, isolated, alone, rough?
There is a security connected to living in a state of medical drama. At least you know what to expect.
But, it’s not a place to hang out when you don’t need to.
Meghan’s last biopsy was in July. The follow-up is this week. My last surgery was in August. And, in a turn of events here, I have spent the last few months in vocal therapy sorting out ways to work around the tumor that desires to strip me of my ability to communicate. We’ve had some success, and last week even amidst a terrible head cold, my voice made it with me all the way to Friday.
And it was on that very Friday morning, as I drove Meghan to a 5:30 AM swim practice, with my head-splitting and my nose running, that I told her how lucky I felt. She may have checked me for fever, to see if I had totally lost it. But I explained – a year ago facing Christmas break without her having been knocked down at least once by something major was an impossible dream. This year, she had done more than ever before, and seems to be getting stronger. That morning I was grateful that I was able to get my butt out of bed, to take her to the place she loves, so she could work on the sport she loves.
This fall we have successfully removed 2 stomach medications that were previously necessary for survival. And, we are well on our way to eliminating a third. There is nutrition, exercise, and natural alternatives in their place. And it is working.
She came home a few weeks ago with a perfect attendance certificate for the month of October. I save everything. I think that may have been her first. These are the things that keep us in perspective.
We have a “doctor cycle” among us now. The knee needs to be checked again, MRI, and two knee doctors. There are clinical exams, GI follow-up and endocrinology. The afternoons these next 6 weeks will be swallowed up with trips to NYC. I’ll add in some appointments of my own, as I prepare for vocal cord surgery, tentatively set, but not yet confirmed. We’ll keep swimming, literally and figuratively. We’ll hold each other up, and we will do something a little different. We will, instead of fitting out lives into the doctors, we will fit the doctors into us.
Raising kids, one, two, three, four, or more- regardless of gender, or age combination each holds unique rewards and challenges. We have our moments, my girl and I, when we challenge each other to the best we can be. Sometimes its deep conversation. Sometimes it’s a little less pretty. But, we do it. We learn and we grow together.
I find myself often, missing relatives who are not here with us anymore. I miss conversations, deep and thoughtful. I miss shared laughs, and the pride they felt and showed. I understand, and comprehend their lives are changed, their eternal lives are more beautiful than I can imagine. But, I still miss them.
I sometimes shuffle around a bit in circles in my mind, feeling a little lonely, a little unsteady, and a little unsure of how to break the cycle.
And even at those loneliest points I take solace at the people in my life who are there. Their own lives keep us from day-to-day interface, but they are there, forming that net that will catch me, or us, if we were to fall. They weave a web through our lives that give us such confidence and gratitude, that I can only hope they feel the same way about us.
As we begin to get heavy into the preparations for Jeans for Rare Genes 3, it is a time to get focused. I am not a huge fan of New Year’s Resolutions. A wise friend recently reminded me a calendar is not necessary to begin change.
Choose positive. That is my simple focus. I will not be perfect at it. But, I will work tirelessly. I will be positive, hopefully not to the point of irritating, but when given the opportunity to face a new situation, I will work to find the positive.
Cowden’s Syndrome will toss us curve balls for the rest of our days. I’ve never been much of a baseball player, but I plan to practice my swing. And just in case- I’ll keep a helmet on as well.
May the culmination of 2016 lead us to gratitude for all the positives it brought, and gratitude for the negatives as well. May it leave us with the reminders of the blessings in our lives. Only in appreciation of al of it can we ever move forward. And really, forward is the only direction I choose to travel.
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
21 years ago I was 22. I was single, and a new teacher. I was just out of college, finding my way. I had a sister who was 25 and had just gotten married, and a sister who was 6.
I knew nothing of what life would have in store for me. I knew only of a few wacky surgeries I had had.
I also knew of some scary times surrounding that 6 year old I loved a whole lot.
Sometime around my sister’s wedding, the little one starting complaining of pain. When she volunteered to go to the doctor we were all stunned.
What followed was a blur, and a nightmare, and a million blessings all rolled into one.
There was this tumor, inside her spinal cord. Inside. By all rights, as my parents were shuffled from doctor to doctor, they were told the little one should not be walking.
Miracles followed miracles, and egos evaporated. The system worked the way it should and she was placed in the hands of Dr. Fred Epstein, arguably THE top pediatric neurosurgeon.
Dr. Epstein cared for Kathi in the operating room, and he cared for her out of the OR as well.
I can remember visiting one day when he came in the room with these remarkable cowboy boots. And he sat down next to her, and spoke to her before even addressing the adults hovered around. He was a gifted surgeon, and a true gentleman. He smiled, he laughed, and clearly loved what he did.
I knew that he had changed my sister’s life, well all of our lives, by being talented, and daring enough to get that tumor out.
I learned later he struggled in school and likely had a learning disability. He had been told he wouldn’t be successful. Someone forgot to tell his patients.
A well healed badge of honor.
My sister swam for years, all through college, runs regularly, and has even finished the NYC Marathon.
I hope Dr. Epstein knew of his ripple effects. I hope all of the really great ones know. Because when it’s done right, medicine, surgery, compassion for others, it changes lives.
Kathi doesn’t have Cowden’s Syndrome. And I couldn’t be happier about that. She also no longer has a spinal cord tumor. And that, well, that is pretty cool too.
My sister’s surgery is one of the many things that helps us keep perspective here. Everyone suffers. Everyone rejoices. A diagnosis doesn’t really change that. Everyone has something.
21 years ago, this doctor, and his cowboy boots, and his smile, saved my little sister’s life.
She has this tatoo on her, as a constant reminder of the wise words of this gentle, superhuman.
“We may know too much about the unpredictable ways of the world to expect a happy ending, but we can’t help but hope for one all the same.” – Dr. Fred Epstein
Dr. Epstein suffered an unfortunate accident in 2001 that rendered him unable to operate. He died in 2006. The ripple effects of his work will live on forever, in my family and across the world.
Dates. Memories. Celebrations. Gratitude.
Today we think of Dr. Epstein with thankful hearts. Thankful for the memories he has allowed us to have, and for the ones we will continue to make.
September 22, 1995 – 2 months before her surgeryApril 14, 2000April 15, 2016
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.
September is a marathon of sorts. Although all the training in the world can never quite prepare you for the twists and turns needed to navigate it through to completion.
September is establishing new routines, in my own classroom, and in our lives. September is learning new students, and new teachers.
Each year, it is about pushing our bodies farther than we have ever been able to. It is not just about surgical recoveries, or broken toes, it is about swim. So much swim. It’s about swim before sun-up, and afternoons too. It is about drama and singing and doctors in between. It’s about finding the inner strength to press on.
It’s about balancing it all. Work, school, after school, meetings, and the like. It’s about stopping to find the beauty, and the sunrise, and the simple pleasures along the way.
This life, this chronically ill life is lonely. I’m not going to lie, or even try to sugar coat it. It is lonely. But, we three in this house embrace and press on. Because, really, there is no alternative.
There is no fault, no anger, no resentment. Reality is that every moment is spent using all the “spoons” we have to get through. At this moment there are no extras. Family and friends who comprehend will still be there with open arms when there is a “spoon” or two to spare. The rest will have found their own way, and that is a loss we will have to take in stride.
Everyone has something. All lives are busy. All lives have joy, and angst. All we can do is take what is in front of us and do the best we can with what we have where we are.
The worry in my heart runs deep. There is reason for it, yet I battle it all the time. It can not, nor will it, define me, or our lives. Regardless, it lingers always, lurking in the shadows.
My girl continues to amaze and impress with wisdom beyond her years.
For her birthday Meghan had a very specific request this year. One of her gifts was, “The Unabridged Poetry of Robert Frost.” I was familiar only with one of his most famous poems. Meghan read this book fervently for most of August. I think I understand why now.
Lab work tomorrow to keep those thyroid hormones in check. We need our strength to remain
beatingcowdens 