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!”

Saturday Adventures

I have this delusion in my head of what a Saturday should be. I think sometimes about getting up – not at the crack of dawn, but at a reasonable hour.  Getting a quick breakfast and jumping in the car to head… well wherever we want to go.  I think about spending Saturday as a family.  Worry free.  Relaxing together.  Sharing an adventure.

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Then there is reality.  It has a way of biting you in the behind when you aren’t paying attention. (Or when you are practicing active ignoring.)

Reality is that we have two working parents in this house.  That same reality that allows us to pay for the medical bills that creep up, and the fun stuff like vacations, is the same reality that means Saturday afternoon adventures are uncommon.  Well, almost unheard of anyway.

wholefoodsLogo1wegmansbrownlogo

costco

I have a grocery shopping routine – down almost to a science.  About every 3 weeks on Friday night, I go on the marathon.  I stop at Costco, and run home with what we need.  Then I head to Wegmans in Woodbridge, and Whole Foods in Millburn.  The whole journey is about 40 or so miles, and it takes about 6 hours from door to door.  Then there is the unpacking…

Why?

Well food sensitivities have kept Meghan  gluten, dairy, and soy free since she was about a year old.  She is also very sensitive to dyes, preservatives, nitrites, food coloring, and the like.  Her diet is pretty much pure and organic.

Local shopping is not as plentiful as that over the bridge, and prices are flat out  better there.  So, last night as we undid the (ridiculous amount of money) worth of groceries, and I put a soup in the crock pot for today, I was about to fall over from fatigue.

crockpot

The piles of laundry already covered the basement floor.  The beds would need to be stripped in the morning.  The bathroom was in dire need of a cleaning after my husband repaired a pipe that burst under the bathroom sink.  I thought about shutting down the alarm and just letting my body do the talking this morning.  I thought about it for about 3 minutes.

Then I took a flashlight into Meghan’s room.  I covered her eyes and looked at the sores on the right cheek of her sleeping face.  My heart sank.  I turned the alarm on.  I knew where we had to be in the morning.

In addition to having Cowden’s Syndrome, Meghan suffers with an immune deficiency.  Well, technically speaking probably more than one.  She is IgG subclass 1 deficient.  Her body doesn’t seem to remember how to fight infections.  She is also Mannose Binding Lectin deficient – a whole other element of the immune system – just absent.

Usually she holds her own.  She takes a HOST of vitamin and mineral supplements.  She eats that pure and largely organic diet I spoke about, and aside from seemingly chronic fatigue, she does OK most of the time.  She can’t be running around too long or too often.  She can not be over stressed.  These things wear her out, and then we have trouble.

When she was just 6 months old she was first hospitalized with an infection of Herpes Simplex 1 (fever blister)  on her right cheek.  It was odd the location it started.  It was in the middle of her face.  Before we knew what it was it had become cellultis, and we spent a week in the hospital.  The first 2 days were the scariest as the blister kept increasing in size.  Eventually my pediatrician at the time called in an infectious disease specialist (my pediatrician now,) who swiftly diagnosed the herpes simplex, and began IV acyclovir.  Within 24 hours things calmed down.  A week after we were admitted, we got to go home.

However she never, despite a few miserably failed attempts, got off the acyclovir.

acyclovir

She spent another week in the hospital at about 20 months, treating an aggressive outbreak.

At one point we slowly weaned her to 500 mg a day only to have her develop a very painful trigeminal neuralgia which the oral surgeon wisely explained was caused by the herpes virus taking up residence in the trigeminal nerve in her face.

trigeminal nerve

We promptly went back up to full dose, only to watch the pain fade away in a few days.

We have seen minor outbreaks through the years – usually nothing more than a red mark to indicate its time to do something.  We have slowly watched her dose of acyclovir be increased.  Currently at 80 pounds she was taking 1400mg a day.

We worry about the liver.  About whether there are long term effects.  But there really is not a choice.

That’s why as I shined the light on her face last night I knew this morning would involve a trip to the pediatrician.

We arrived bright and early and as he greeted us warmly he sized up her face in one brief glance.

“I see our old friend is trying to make an appearance.  Raise the acyclovir to 1600mg.  Move to 3 times a day to help it get through the system better.  Take a picture every morning, and call me if it doesn’t improve.  I will see you in 2 weeks.”

We stopped at CVS.  We texted a friend’s mom for a play date.  Then we got home at about 11:30 – drained.

Felix was working to bleach the bathroom – a job my asthma doesn’t allow.

There were human beds and dog beds to wash.  There were floors to clean, and dishes to do.  There was spaghetti sauce and some gluten free cookies to make.

funny-dirty-laundry

As I heard the sound of giggling girls from behind Meghan’s closed bedroom door – I took solace in the fact that at least she had an adventure today.  Even if it was in the house.

Cowden’s Syndrome and the immune system don’t seem linked on paper.  But, anecdotally I hear of issues from every Cowden’s patient I correspond with.  What goes on in our bodies to make it just so hard to put a virus to rest?

One child.  One diagnosed genetic disorder on the tumor suppressor gene.  A mannose binding lectin (a protein) that is also missing.  An IgG subclass deficiency.  Metabolic errors still being unearthed.

And I was looking for an adventure?

I should be happy and content with the Saturday cleaning.  It is the most rest we seem to get!

I believe…

I believe that there are lessons to be learned from every event in life- especially the ones that don’t turn out like we plan.

I believe in looking for the positives; when plans change without warning, when people disappoint us, when we are thrust onto paths we never wanted to travel and into circles we never knew existed.

I believe that our indoctrination into the world of Rare Diseases came with an invitation to sit back or step forward.  We choose to step forward.  I believe we will make a difference.

hope its in our genes

I believe in prayer, and God, and miracles, and angels – and I am not ashamed or embarrassed to say so.

I believe in a God that doesn’t plan for bad things to happen, and who cries with us when they do.  I believe that same God will give us the strength to get through the trials and tragedies and all our adversity – if only we ask.

god helps us handle

I believe in angels, and speak regularly of my cousin Meghan, our guardian angel.  But, I also believe there are armies of angels around us.  I am thinking especially today about the father and his 4-year-old daughter that were hit by a fire truck at the same intersection I had my accident in November.  Nothing short of angels pulled them both from the car – shaken and banged up, but very much alive.

crash

I believe in miracles-large and small.   I have witnessed at least one large one,  when my sister’s beautiful niece pulled through a very scary life threatening virus 2 years ago.  I believe that miracles happen every day – all around us.  But every day I witness miracles, as the flowers bud, and the birds fly, and the children grow.

life is like a bicycle

I believe that adversity can only define us if we let it.  Our struggles surely shape us, as we grow each day – but how we handle them affects us, and the people around us.  I believe that Cowden’s Syndrome – through my daughter’s diagnosis, saved my life.  I believe that PTEN mutations, and broken tumor suppressor genes are scary – but not “hide under the bed” scary.  They are more like “you can try that roller coaster you don’t like” scary.

A roller coaster ride!
A roller coaster ride!

I believe we are allowed to be frustrated and sad and angry and mad.  Every single one of us – sometimes.  I believe that life can be very, very, very hard.  Overwhelming at times.  But, I also believe in doing my best to channel that energy, and teaching my daughter to do the same.

life is not a measure of days

I believe in smiling more than frowning.  I tell Meghan that she will draw more people to her with a smile on her face.  She listens.

I believe that good things can come from unexpected change.  New friendships and old ones become more solid when tested.  People you never expected can go to bat for you – and look out for you.

I believe in surrounding myself with people who are “real.”  Who say what they mean, and mean what they say.  I believe in surrounding myself with people who have all types of beliefs, as long as they have a kind heart and are true to themselves.

I believe in speaking out about my own life, and my own experiences; whether they are medical, allergies, emotional, physical because keeping them inside doesn’t help a soul.

I believe writing helps me channel my own energy into a productive outlet.  I believe I will spend every day on this earth in some way thinking, addressing, or working through a medical issue for Meghan or I.  I believe – if I stay focused it will not consume me. (Although from time to time I may need some help!)

toxins

I believe that people who are only in this life to gossip and spread lies and false information are toxic.

I have made a pact to rid my life of toxins.  I believe with a lot of determination it can be done!

 

Collateral Damage

In regard to surgery and absences – this year has been much better for both of us… Maybe some things are looking up. (Published June 8,2012)

beatingcowdens

Collateral damageoccurs when something incidental to the intended target is damaged during an attack. (Wikipedia)

 

I don’t think it’s far-fetched toequate Cowden’s Syndrome to a war.

Our bodies are under attack.  This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant. 

We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.

It can be an all-consuming job.

When we have to have the tumors removed there is the recovery time, which can seem endless.  The battle scars, which forever change the landscape of our bodies also take some getting used to.

There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.

There is…

View original post 337 more words

What do these three have in common?

Many simple species, such as the star fish, have the ability to regenerate severed appendages. [©Jupiter Images, 2008]
Many simple species, such as the star fish, have the ability to regenerate severed appendages. [©Jupiter Images, 2008]
The leopard gecko, like many other lizards, is able to voluntarily shed its tail as a strategy to escape predation. These lizards are able to develop a replacement appendage through epimorphic regeneration that resembles the original, complete with nerves, blood vessels, and skeletal support.
Days after the tonsils were removed in 2008

So, what do these three have in common?   Give up?  I bet a few of my Cowden’s Syndrome friends could guess…

They all can regenerate tissue that has been removed!

Except the first two tend to do it in a much more productive way.

I had heard tell that lymphoid tissue (especially the thyroid and tonsils) could regrow – especially in Cowden’s Syndrome patients.  (It makes sense in a way, PTEN is a tumor suppressor gene that is broken, so cellular overgrowth is common.) But, I chose to ignore it.

Sometimes ignoring things for awhile allows you to deal with other things.

When Meghan had her tonsils and adenoids COMPLETELY removed in May of 2008 she was in the middle of a 12 week strep infection.  Three months of antibiotics, and they were still pulling “heavy positive” cultures every 2 weeks.  By the time they were to be taken out she was admitted for several days of antibiotics prior for fear of rheumatic fever.  She was a chronic, almost constant strep sufferer.

Then for about 2 years – nothing.  No strep.

I don’t remember the first time it came back.  It was about 2 years ago.  A full year before I ever heard of a PTEN mutation, or had any idea what Cowden’s Syndrome had in store for us.  I thought it was odd, the strep coming back without the tonsils, but I chalked it up to a rotten immune system.

Slowly the cases have become more frequent.  It is almost constant.  We don’t leave the pediatrician without a throat culture and a script for an antibiotic.  Not all the cultures come back positive, but you can tell.  The food avoidance, the tough time swallowing, the swollen glands, the puss in the throat.  You just know.

Lately it has been about once every 3 weeks.  Way too many antibiotics to be good for anyone, but strep is way to serious to ignore.  So, we keep treating, and wondering.

Today we had a routine visit to the oncologist.  I mentioned the strep.  She looked in the throat.  She said, “Have you ever considered having her tonsils out?”

That’s when I knew we were in trouble… again.

Guess I should schedule that visit to the ENT!

Tennis anyone?

Shot of a tennis racket and two tennis balls o...
Shot of a tennis racket and two tennis balls on a court. Taken by myself of my racket. Intended for use in WikiProject Tennis Template. vlad § inger tlk 04:59, 18 June 2007 (UTC) (Photo credit: Wikipedia)

I don’t play tennis.  Never have.  I am not that quick, athletic or coordinated.  But I have always wondered what it is like to be the tennis ball.  Back and forth, back and forth.  No real purpose, no one stops to look at it.  They just quickly replace it when it goes out of play.

I am starting to feel a bit like a tennis ball these days.

I have gone through more doctors for Meghan and I in the last 12 months than I care to count.  They are either interested in helping, but too confused to figure it out, or, worse, they are too lazy to try to figure out anything to do with a syndrome they have never heard of.

I can teach them the basics – if they would listen.  PTEN is a tumor suppressor gene.  Ours is broken.  We make tumors.  Especially in certain spots.  When things are weird, look for them.  Regularly screen for them with the same tests you order all the time.  Just screen more often and before we have symptoms.  That will help us live.

I have journal articles.  I have my reports, and Meghan’s too.

I was told last year to get myself an oncologist to manage my case.  The one close to home lasted only a few months.  Irreconcilable differences.  Maybe he had wax in his ears.

So I took a break from looking.  The double mastectomy, the breast cancer, the hysterectomy – they took some time.  Now, as I am healing from the hysterectomy I get a referral from my gyn oncologist to a general oncologist she knows very well.

I called his office.  I faxed 39 pages of my test results and history.  They called to say I needed someone else – he wasn’t right for me.  No, I insisted.  Dr. B said he was the doctor I needed.  I faxed him and article from the Journal of Clinical Cancer

A Tennis ball Author: User:Fcb981
A Tennis ball Author: User:Fcb981 (Photo credit: Wikipedia)

Research, and the request that he please just look at me.

No.

I got a referral to an oncologist who specializes in genetics.  She doesn’t take my insurance.

Back and forth, back and forth.

Tennis anyone?

Collateral Damage

Collateral Damage (film)
Collateral Damage (film) (Photo credit: Wikipedia)

Collateral damage occurs when something incidental to the intended target is damaged during an attack. (Wikipedia)

 

I don’t think it’s far-fetched to equate Cowden’s Syndrome to a war.

Our bodies are under attack.  This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant. 

We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.

It can be an all-consuming job.

When we have to have the tumors removed there is the recovery time, which can seem endless.  The battle scars, which forever change the landscape of our bodies also take some getting used to.

There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.

There is also the  battle of trying to feel well all the time, while convincing people that this is a legitimate illness, and you really are sick.

This is a war my daughter and I are fighting together.  Each on our own road, but we are battling the same enemy.

Like in every war it is inevitable that there is collateral damage.

Haughton play park 20070602
Haughton play park 20070602 (Photo credit: Wikipedia)

  Today was the 3rd grade play at my daughter’s school.  It was also “Family Fun Day,”  where the parents and children in the entire 3rd grade head to a local park and spend 3 hours chatting, playing and sharing a picnic lunch.

It was about 82 and sunny here today.  The weather hasn’t been this perfect in weeks.

And I, I was at work.  My daughter was at “Family Fun Day” with some very caring mothers of the friends she has in her class.

How is this all connected?  Very easy.

If I were not me, fighting Cowden’s Syndrome, and all its ramifications, and taking care of a girl who is also fighting it… maybe I could have been there.

Instead, I missed 4 days of work for her AVM surgery, 24 days for my double mastectomy, 12 days for my hysterectomy, and when there are only 183 school days in the year, you can see the percentages aren’t good.

I got permission to go in an hour late.  I got in to see the dress rehearsal of the show.  I stole 10 minutes on my lunch to drive by the park.  And I spent the whole day thinking how nice it would have been to just take a personal day and hang with my kid.

She is such a good girl.  “Don’t worry Mommy, I understand.  I am so glad you are feeling better, and I know you need to get back to work.  Maybe next year we will all have less surgeries, and then you can come?”

Collateral damage – my girl having to grow up so damned fast.

I really do hate this disease.