I have nodules WHERE???

It took me over a week to actually wrap my head around this one.

The summer is not just time for Meghan to get checked and cleaned up, it’s time for me too.  And this summer I tracked down a new doctor.

Sometime around the end of April my voice started to bother me.  I was getting hoarse easily.  I explained it away as allergies, season change, dust, “I must be getting sick,” and everything else I could think of.  Except it bothered me.  And that creepy voice that sneaks in sometimes to remind me that my body has already betrayed itself once, started to take hold.

hoarse

After almost 20 years of teaching, and never ever struggling to use my “teacher voice,”  I couldn’t project.  Simultaneously with the pain in my right implant, and the nodule being watched on the remnants of my thyroid, it started to get in my head.

I went to my primary doctor, and wasted several hours to get nothing that resembled an answer.  They suggested a thyroid sonogram.  I never went back.

I started researching ENTs locally.  I found very few who took my insurance, and fewer who seemed to have any voice experience.

I turned to the internet and found a voice specialist at a facility I trust in NYC.

I don’t really know what I expected from the exam.  I filled out the preliminary papers, and gave the basic Cowden’s rundown.  They did a few tests externally with a microphone, and another with a camera in my nose.  Not pleasant, but incredibly informative.

And there on the screen was a “benign appearing” nodule on the side of my vocal cords, causing them to briefly lock together when I make certain sounds.  Fascinating.  But bothersome all the same.

Not mine, but they looked a lot loke this.
Not mine, but they looked a lot like this.

They reassured me several times that the nodules were “benign appearing.”  I appreciated that, but reminded them many of my scars are from “benign, and benign appearing” growths.  I asked about the prevalence, and if it was linked to my Cowden’s Syndrome.  I got a very definitive, “Maybe, or maybe not.”  These nodules occur in the general population, they can be caused by overuse, but what had me perplexed was the problem seemed to start when I did the LEAST amount of teaching for the year.  I was out of my program for quite an extended time between spring testing and other professional obligations.  So, why now?

And, what to do?  September is looming, and my life will be in the classroom many hours a day.  I need my silly voice, my sing-song voice, my stern voice, my loud voice, my quiet voice, and my serious voice.  Elementary school students expect, and deserve nothing less.

I was given a number for a “voice therapist.”  And as of now my voice is getting a workout leaving messages for her.  I asked the doctor what are the chances this “voice therapy” could control the nodules.  He told me it “couldn’t hurt.”  I asked if this was like giving me compression hose for my horrendous veins?  Is it going to be a situation where voice therapy delays an inevitable surgery?  Because any scar tissue on my vocal cords seems scarier than the painful legs I’ve contended with for years.

voice

The answer is, there is none.  I will persist and connect with this voice therapist.  I will hear her out and try my best.  And in 4 months or so I will follow-up with the doctor to evaluate.  That is assuming the fall semester goes off without incident, and all my new students can hear me loudly and clearly.

For now, I’m using mostly the quiet voice.  Often mumbling to myself.  Because whether this is Cowden’s related or not, the whole “growing things” in my body is incredibly old.

Watch.  Wait.  Check.  Recheck. Remove if necessary.  That’s how we roll.

#beatingcowdens

Balance

seuss 1

I am almost at the point where I have stopped waiting for the break.  I am just about ready to stop wondering when there will be rest.  I am almost ready – but not quite.

September as a teacher is a month full of new beginnings.  One of the blessings of having a job that begins and ends each year is the “newness” that September brings with it.  There is something special about meeting new students, or old friends after a summer vacation.  There is something exciting about anxious eyes and new backpacks, and children eager to reconnect with friends.

back-to-school

So as I ran through September for about the 16th time, I took the time to appreciate the wonders and the smiles of the children around me- if only for a few fleeting moments.  See, I remember September 16, and 15, and 14 years ago.  I remember September when I was still a bit unsure of myself.  I remember September before there was a husband, and a house, and a daughter, and 2 dogs, and 2 Cowden’s Syndrome  diagnoses, and countless appointments, and surgeries, and medical bills, and paperwork at home to match the paperwork in school.  I remember those early Septembers thinking I was overwhelmed.  And, like so many things happen in life – looking back now I realize I had no idea.

This week we organized a new car, soon to be picked up.  We got an antibiotic for the sore throat full of strep symptoms again.  We got a new roof on the house.  The new roof prompted a thorough cleaning of the entire second floor, which led to the Halloween decorations coming out a bit too early.

This weekend we packed up all of Meghan’s clothes – and I mean virtually all of them.  We gave them to a beautiful family, and started over.  She has grown this year several inches, has a foot as big as mine, and we will soon be sharing tops.

This weekend there were lessons to plan, IEPs to read, standards to sort through and a binder to prepare.  I love my work, I really do.  But the setup, and the stipulations placed on us from places way above us are exhausting in and of themselves.

This weekend there were bills to pay.  A giant stack, somewhere in between a pile of mail that needed to be shredded and just to the right and a bit higher than the mountain of laundry in the middle of the basement floor.

Ok - so maybe not QUITE this bad..
Ok – so maybe not QUITE this bad..

This weekend, in between cleaning and sorting, and laundry, and preparing food for the week, there was this headache.  A nasty one that just wouldn’t quit.  She started complaining Tuesday and it just persisted.  And as life continued at its rapid pace, and constant motion, there was Meghan in bed for the better part of Saturday.  No swim practice for her, always a gut wrenching decision, her body can not endure this pace of constant motion.  And my heart, torn in two, kept a watchful eye on my girl as I continued the whirlwind.

I remember being her when I was younger.  I remember watching my mom and sister in constant motion.  I remember being sick the morning after a sleepover.  I remember just not feeling well.  But none of that, not any of it, makes me feel any better when it is my girl, sitting and hurting.

There is worry all around.  I am aware of the friends and family struggling with illness of all types.  I am aware of their angst and their hurt.  And as much as I pray for peace for them, for their loved ones, for their healing I have to honestly say the biggest piece of my heart sits with my beautiful girl.

We help her rest.  We feed her the most potent superfoods we can buy…

She is trapped in a schedule with no relief, in a body that sadly lacks stamina, with a syndrome that is angered by overwhelming fatigue.  But what to give up?  5th grade promises to be fun, but busy.  Then there is physical therapy – twice a week, and swim practice on the schedule 3 times a week.  Plus doctors appointments, like the hand surgeon follow up in Manhattan on Thursday…

And while we work on her to keep her anxiety in check, there is always mine to look after.  When you have a syndrome that grows tumors, nothing is ever without a high alert.  A headache, probably allergies, but what if…  The pain in the leg, probably a muscle pain, but what about the AVM… And if she could have an AVM in her knee, and her hand…

one-day-at-a-time-tshirt_design

Life is about balance.

September is chaos.  It just is.

But the nice thing about September is its followed by October.

And while I am not hopeful for huge amounts of downtime anywhere in the foreseeable future, I am confident we will sneak in some pumpkin and apple picking one day in the next few weeks.

And I am learning that while this Cowden’s Syndrome, and all its extra worry is going to linger forever, somehow, some way it seems to make the little moments that much better.

Maybe that’s where the balance comes in…

BalanceBoardImg (1)

 

My Young Teacher

As I was getting ready to say goodnight to Meghan a few days ago, she was visibly upset.

During our conversation I learned that she felt the cleaner I had just given her for her face had made the small bumps she has (courtesy of Cowden’s Syndrome) more noticeable than before.

I didn’t see it.

I look and I see my beautiful daughter – radiant inside and out.

God's got this

Cowden’s affects the skin, and sometimes we get these obnoxious small bumps in all places you would never want them.   Dermatologists with little experience with the syndrome don’t recognize that each one is in fact a tiny benign tumor,  in the hair follicle, causing inflammation.

She is almost 10.  She is 5 feet tall.  She has fantastic hair and a great attitude about life.  But, like any girl in this society she gets self conscious about her appearance at times.

So, in my effort to reassure her that her “bumps” were most noticeable to her, I showed her my legs.

Both legs are riddled with bulging, pulsating, colorful varicose veins.  I have had 7 surgeries to keep them under control and eliminate the pain that goes along with them.  I have over the last 2 years lost about 35 pounds.  They just don’t let up.

rare mom and meg

I told her how self conscious I am about my legs.  I told her how hard it is to wear a bathing suit, or shorts.  I told her that  I have only bought my first shorts in over 10 years in the last 2.

I know now what I didn’t know then – that these relentless varicose veins are likely a credit to my Cowden’s Syndrome, and the same path that led Meghan to that pesky AVM in her knee – a generation earlier presents as these veins in me.

She looked at me, pointing out my own insecurities, and she said Mom, you have to understand – it looks worse to you.  And you have to remember, “Some people only wish they had legs… or legs that work.”

And there it was.  My girl again.

“Sometimes your blessings come through raindrops, sometimes your healing comes through tears…” – Laura Story

hope its in our genes

We took the iPad.  We looked at pictures of veins.  We looked at pictures of acne.  We looked in the mirror.  We hugged.

Sometimes its so hard.  One battle after another on this journey.

I don’t know that I could handle anything so gracefully without my young teacher.

Mother, Wife, Teacher, Advocate

First I was a daughter.  A sometimes mousy, sometimes mouthy daughter.  I was respectful, but hated to be stepped on.  I wrote letters to the editor when I was annoyed.  I let people know how I felt.

Then I was a teenager.  I was full of opinions and was quite sure they were all right.  I was willing to debate for hours, or sometimes stay really really quiet – stewing in my personal assurance that I was right and they weren’t.

hand ove rmouth

I spent 4 years away at college.  Even though I didn’t want to – lol.  I will be forever grateful to my stepdad for his insistence that I drive, AND go away to college.  I am not sure I would have done either.  At college I learned to stand on my own two feet.  I met all sorts of people from all walks of life.

time-warp

By the time I hit my 20s life had educated me some.  I still held strong convictions, but I was able to accept that it was ok for others to have their own.  I gained the belief that as long as people were respectful – we could disagree.

In my 20s I met my husband.  A match that many thought was destined to fail.  And unlikely pair we compliment each other in every way.  He was my missing piece.

bethlehem 4

In my 20s I became a teacher.  A lifelong goal realized.  I worked harder than I ever had in my life to be the best I could be.  I recognized the magic of teaching.  I became addicted to the “spark” in their eye when they “get it.”  I came to see that my presence and my attitude were as important as my lessons.  I taught/teach my students, my children – to see the best in others, and to tolerate and embrace differences respectfully.

In my 20s Mom had cancer.  And I learned what it was like to be scared.  And I learned what really really matters in life.  And she fought, and she won.  I always appreciated my family, but I learned to appreciate them even more.

In my 20s I got married.  I got my Master’s Degree.  We bought a house.  We tore it apart.  We fixed it up again.  We got buried in debt.  We worked hard to get out.

Then – just about when I was ready to turn 30 – we had Meghan.

Disney 2012
Disney 2012

Mom said you do more changing in your 20s than in your teens.  She was right.  But as my 30s come to a close – I think they beat my 20s hands down.

In my 30s I learned to love my heart, outside of my body.  I learned that I would never be as important as that little human we created out of love.  I learned about family all over again.

In my 30s I learned to live without sleep.  I learned to endure tears and screeching and pain as my heart ached for my baby girl.  I learned that colic can last way longer than 3 months, and I learned to bounce and rock and sing and move for hours and hours on end.

In my 30s I learned how to balance two full time jobs, as a mother and a teacher.

In my 30s I learned what it was like to be truly terrified, as your baby went into the hospital, and into surgery over and over again.

In my 30s I became really close with God.  I learned that my relationship with Him transcends walls and buildings and people.  I learned gratitude, and I learned not to be shy about my faith.

In my 30s I learned that convictions can change.  And the things I was sure I was right about 5 or 10 or 15 years ago…well, maybe I wasn’t so right after all.

In my 30s I learned that close friends share bonds that go past time and distance.  I learned that even though I miss them, they are there when the going gets tough.  I learned that EMail, facebook, and the internet, when used properly – are some of the biggest blessings in life.

In my 30s I learned that you have the power to make changes in your life when situations, circumstances or people have you angry, sad, hurt, mad, or generally annoyed.  I learned doing something is way more rewarding that complaining.

dead-poets-society-1thoreau 3

In my 30s I learned if you believe in something enough, if you believe in someone enough, well even if you stand alone, you have to stand up for them.  And I learned that if you do – they will be your friend forever and ever.

In my 30s I learned what it was like to hear the words “You have a Rare Disease.”  I learned words like “Cowden’s Syndrome.”  I learned about “tumor suppressor genes,” and “genetic mutations.”  I learned about risks and tests that could take worry to a whole new level- if I let it.

rare-disease-day-feature

In my 30s I learned what it was like to hear the words “You HAD cancer.”

In my 30s I learned which body parts are “extra.”

In my 30s I learned – because they made me- what it was like to tell your 9 year old, “The doctors are pretty sure you will have cancer.”

From mousy to mouthy.

From school teacher to Mom.

From “victim” to advocate.

All these things make me who I am today.

So much has changed, and yet at my core, my heart – I am the same.

I feel.  Deeply and truly.  I care.  Often too much.  I laugh, and I love with my whole heart.  I know pain, and I know joy, and I have been intimate with both.  I know fear and bravery.  I know that I am not always right – but when I am… watch out.  Because little will stand in my way.

I know life is not fair.

Life's not fair

god-is-good-logo

I know God is Good.

This weekend I went to 2 wakes.  One for a woman who had lived a full life, and another for a young girl who sparsely got the chance.  There are too many wakes.  There are too many things that don’t make any sense.  Too many people gone way too soon.

I can wail and cry and wither away in my sadness.  I can let fear win – or I can stand strong.

Cowden’s Syndrome tries to win.  It can strike fear in my core with a headache, or the sighting of a lump, or the feel of a bump.  But I will not let it paralyze us.  I will not let it win.

So we have our team of doctors.  We have our visits scheduled.  We check it all.  Sometimes its tiresome.  Sometimes its discouraging.  But I would rather be out in front of the boulder – than under it.

This is really how I view the race against Cowden's Syndrome
This is really how I view the race against Cowden’s Syndrome

Through it all I know Meghan is watching.  My student – learning from how I react, how I fight, how I handle adversity.  My teacher – teaching me bravery, courage, candor, tenacity, and stamina.

always believe

I do the best I can to show her that its important to stand up for what you believe in.

I think she gets it.  I know I do.

The 30s have been a ride, and I still have a few more months to go.

In my 30s I learned what it was like to total a car.  I learned the frustration and injustice that often goes along with accidents that they would like to tell me I am powerless to fix.  I also learned that even though there are in fact some things I can not fix – there are others I can and will speak up about.

photo 1

If you happen to catch this before 10 PM – try channel 11 news “Help Me Howard.”  Working with the neighborhood to change a few things at my car accident site.

https://beatingcowdens.com/2013/06/04/howard-works-to-put-a-stop-sign-in-a-deadly-staten-island-intersection/

Advocacy.  Empowering.  Invigorating.  Much more fun than lying in wait.

We have to keep our energy up, standing up for what we belive in while we are “Beating Cowden’s!”