The Grass is Green!

thankful for the bad

Sounds ridiculously cheesy I know.  Sometimes the bad things are just crap.  And some days just stink.  But, not most of them.  Really, if I think about it- just a few days now and then really stink.  The rest of them seem to hold within them some lesson, some joy, some laugh, some memory – something that makes my spirit richer than it was before.

Don’t ever delude yourself into thinking things are perfect here.  That would be a lie.  We have our whiny, cranky, in each other’s way kind of days.  But that’s not most of them.

Lots of rotten things happen to everyone.  But lots of good things happen too.

Lots of rotten things happen when you have Cowden’s Syndrome. Sometimes the key lies in looking at things from a different perspective.

perspective

Every moment.  Every meeting.  Every diagnosis.  Every doctor’s appointment.  Every report read.  Every bill fought for.  Every new teacher.  Every new friend.  Every old friendship renewed.  Every miracle.  Every ordinary moment.  They all bring us to where we are.

Maybe I have watched too much sci-fi with my husband, but to change any one thing, any event in our lives, could alter the course of our lives.

I won’t spend time wishing things away- certainly not the good, and definitely not the bad.

Sometimes the lessons hurt.  Sometimes they make us cry.  Sometimes, like when we say goodbye to dancing school, and all its emotional joy, coupled with insufferable physical pain, we get a little sad.

Then we say, if it wasn’t for dance, we wouldn’t have learned love of the stage.  If it weren’t for dance we wouldn’t have seen a growth in confidence, and an ability to manage a growing young body.  Losing dance is hard…

But if there wasn’t Cowden’s, and chronic pain, and an inability to deal with impact – would there be swimming?

Private lessons at a local college start Saturday.  Regular practice begins the next month.  She salivates when she gets near a pool.  She just wants to get better and better.

now is right on time

New sport, new school, new friends, and old ones too.  Same old pain.  Same nasty viruses.  Some things change, and some remain the same.

Sometimes I wish (quietly to myself) that life could be a little bit easier.  Then I look at my daughter, and my husband, and my dogs, and my house, and I think – things are just fine right here.

We have each other – for the ups and downs- for the ins and outs.

They say if everyone had a few moments with everyone else’s problems, they would fight to grab their own back.

We are getting by.  We are “beating cowden’s”

The grass is green enough right here.

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!

 

Keep on, Keeping on!

without hope

Several months ago I wrote about “The Beginning of the End”  Meghan was having trouble keeping us at dancing school.  The pain kept getting out in front of her.

https://beatingcowdens.com/2013/03/25/i-fear-this-is-the-beginning-of-the-end/

While in some ways the decrease in stress these last few months, plus the return of Physical Therapy twice a week, have helped her pain – but, it became increasingly evident dance was just not meant to be.

She was sick, and missed class.  Then she was hurting, and missed another class.  She missed the dress rehearsal  and trophy night because she was home from school with a low fever.  Always seems to be something.

So as we headed out to “Candyland” yesterday morning, we all knew it would be her last recital.  The dancing takes a toll on her joints that it would be foolish to keep repeating.  But, that didn’t dampen the mood on the soggy Sunday.  Meghan was ready.

meghanleigh8903.isagenix.com
meghanleigh8903.isagenix.com

We started her day with the electrolytes from Isagenix that help her so much.  Then we left her backstage at the theatre with all the other dancers.

It can get long when your dancer is in number 25 in a show of 27 acts, but I find the other dances entertaining, and before we knew it – she was on stage, ready to shine.

There was no pain evident in that body as the rush of being on stage overwhelmed her.  She smiled and moved in ways my body just never could – or would.

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When I met her at the stage door to bring her to her waiting father and grandparents, I had some flowers in hand for a job well done.  She knew this was it for her, but as always – she kept looking forward.  “I will get on stage again Mom.  Maybe in Junior High, maybe in a theater program.  I can’t keep dancing, but I love the stage.”

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dance2013

We took lots of great pictures.  We cherished the memories.  We enjoyed a nice lunch of Gluten Free pizza.

Yesterday was a rush

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Today came the pain.  The elbows, the knees.  An epsom salt bath, and some relaxation.  It helped some, but its hard to tell.  She is so used to the pain.

And as she headed to bed, “How many weeks until my swim lessons start?”

Cowden’s Syndrome, you SOB.  You may have me exhausted, but you picked a worthy adversary in my girl.  She will not go quietly.  She WILL win.

“Beatingcowdens” Not just a blog title, but a way of life.

Candy Land 2013
Candy Land 2013

Moving Forward

May 16th for years has had a special place in my heart.

In 1985 my cousin Meghan was born.  I was in the 6th grade and giddy to get to know her.  I never could have known at the time that her life would be tragically cut short after a more than 4 year battle with leukemia.

"Angel Meghan" - 1987
“Angel Meghan” – 1987

Her feisty nature,  her smile, her spirit, and her strength have always been an inspiration to me, and it was an honor years later, to be able to name my daughter after the spirited young girl who became an angel at 6 and a half, on my 18th birthday.

My daughter carries so many of the characteristics that endeared my cousin to me.  She is the same kind of spirit, who lights up a room, and makes everyone smile by being around them.  She endures medical procedures sparsely batting an eye, and accepts the reality of her life with grace.

My Meghan - Spring 2004

Last year on May 16th I was at NYU hospital, just 10 weeks after my bilateral mastectomy, undergoing a complete hysterectomy.  I knew that day I had the prayers of my family, and the strength of my angel by my side.

I have a “thing” for dates.  I remember numbers.  Maybe this is how my love of math shows through.  I like answers, and things that are absolute, or make some sense.  Maybe my recognition of dates, and anniversaries is a way of marking time – or maybe its a way of celebrating.  These anniversaries that I remember – some sad, others bittersweet, have shaped me as a person.  They are all pieces of that every evolving puzzle.

I thought about the surgery this morning.  I thought about it being a full year since all my “girl parts” were officially gone.  I thought of the perils of the hysterectomy recovery and how in so many ways this was a tougher surgery for me.  Then I thought about my relief, and how much less of a cancer risk I am than I was a year ago.  And I got dressed with a smile.

happy hysterecomy

I thought about Angelina Jolie.  I thought about how happy I am for her – that she was able to make an empowered decision to get out in front of her breast cancer risk.  I thought about how happy I am that she has brought genetic testing into light.

But a few things have really bothered me.

PTEN mutations (Cowden’s Syndrome and the sister disorders) carry with them the same imminent breast cancer risk.  I myself had been tested for BRCA1  years before I ever knew of PTEN. I was negative.  The genetic counselor who tested me did not even have PTEN on her radar screen.  I know its rare – I do.  But I have to believe this is the opportune time to at least educate the medical professionals, if not the public, on the reality that there are other genetic mutations that carry imminent cancer risks.  I am sure there are more that I haven’t learned about yet.  Let’s use this opportunity to raise awareness not only of the “popular” genetic mutations, but of the others as well.  Had my daughter never been diagnosed, by the well educated geneticist – it is likely I would not be here to write this today.

I am also bothered by the haters.  You know the haters.  The “Monday morning quarterbacks.”

They have crept out in quantity and I have a few words for them too.

BUTT OUT!

butt out

If you don’t like the idea of a prophylactic mastectomy – then don’t have one.  Plain and simple.

If you don’t like the idea of a complete hysterectomy at 38 because the alternative was 4x a year – yes you read that right- 4x a year SURGICAL uterine biopsies, then don’t have one.

When you live with the Sword of Damocles hanging above your head every day, when you have to go about your business, and work, and raise a child, and pay bills, and shop and function with the feeling of impending doom that is sometimes hard to shake – when you have a diagnosis of a genetic mutation that is not going away no matter what you do.  Then, maybe then you and I can talk.

damocles

Until then,  wish Angelina a good long healthy life.  Look up “genetic mutations that cause cancer” or “The Global Genes Project” or “The National Association for Rare Disorders.”  Get a feel for what we go through every single day of our lives.

You probably wouldn’t know us if you passed us on the street.  We are some of the strongest and bravest and smartest people you will ever lay eyes on.  We stop and smell the roses.  We hug.  We smile.  We laugh.  We get how fleeting life is.

May 16th will always be a significant day for me.

But, moving forward -so will every day.  The first year is over.  Now on with the rest of our lives!

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In case you are interested…

http://idioms.thefreedictionary.com/a+sword+of+Damocles+hangs+over+head (Sword of Damocles)

http://globalgenes.org/ (Global Genes Project)

http://www.rarediseases.org/ (National Association of Rare Disorders)

https://www.facebook.com/ptenworld?fref=ts (Facebook Page for PTEN world)

Prophylactic Bilateral Mastectomy – Not just for the movie stars

I have been busy this week – working a on a few new projects.  Trying to find some distracting hobbies.  I need a few things to every once in the while take the focus off the imminent cancer risks plaguing Meghan and I every second of every day.

So, I started talking a lot about Isagenix, the product that did so much to give my husband back his health, and to help him lose over 30 pounds in the process.

This week I have signed up four friends to try to get healthy with Isagenix, and I feel good about advocating a high quality product.

http://meghanleigh8903.isagenix.com/us/en/landing_cfl.html#

Isagenix

This week involved hosting an anniversary party for two overly deserving parents.  It also involved some run of the mill nonsense – dealing with ridiculous medical bills and the like, from people who will never “get” what it means to have to spend every day of your life out in front of a chronic, potentially life threatening rare disease, PTEN Hamartoma Tumor Syndrome – or Cowden’s Syndrome, as we usually refer to it.

I do my best every day, to raise awareness of what it is like to live with a rare disease, a genetic mutation that predisposes my daughter and I to so many cancers.  I do my best, wearing proudly our denim ribbon, and sharing ribbons with friends and family, to educate the community on our, and other Rare Diseases.

hope its in our genes

Now, I know its slow going, but I am confident that more people in our community have heard about Cowden’s Syndrome than just a year ago.  Of that I am sure.  And we will continue our grassroots effort – one person at a time.  Until hopefully, one day everyone will know of the “Global Genes Project,” and the 7.000+ Rare Diseases besides ours that are out there.

Today I sat down at a scoring site for the State Math Exam, and two girls I never met before feverishly gushed over the bravery of Angelina Jolie.  Having heard nothing of the story, I asked what all the fuss was about.

English: Angelina Jolie at the Cannes film fes...
English: Angelina Jolie at the Cannes film festival. (Photo credit: Wikipedia)

“She had a preventative double mastectomy because she has a gene that makes it more than 80% likely she will get breast cancer.  She is so brave!”

I smiled in spite of myself.  I smiled in spite of the irony that had me wearing the T shirt “Yes, these are fake – the real ones tried to kill me!”

yes_theyre_fake_real_ones_tried_to_kill_me_light_t

I smiled because I thought it was great that Angelina was well and had gone public.

“You know she decreased her breast cancer risk to under 5% now?  She is so brave!  I can’t imagine anyone doing that!”

I still kept quiet.  I quickly checked my Emails to reveal that the blogs I follow regularly were all over the Aneglina story and had eloquently covered it.  I listened some more.

Finally, almost on cue, they got bored with their story and asked me about my necklace – the denim ribbon.

meg necklace3

I told them I my daughter and I had a rare genetic disease.  That the denim ribbon was the symbol for rare and genetic disorders.  They asked what the name of it was.  So as I identified “Cowden’s Syndrome,” the expected reply was given.  “I haven’t heard of that.”

“Well,” in my most succinct conversational tone, “PTEN is a gene that stops tumor growth.  Ours is broken so we are more likely to get cancerous and non cancerous tumors all over our bodies.  Especially in the breast, thyroid, and uterus.”

“YOU MEAN YOU HAVE THE SAME GENE BROKEN AS ANGELINA JOLIE???”

(Having not fully read any article I quick double checked my suspicions and confirmed,) “No, she has a mutation on the BRCA1 gene. My daughter and I have the same 85% risk of breast cancer, as well as countless other elevated cancer risks.”

“Well if you ever have to get a mastectomy at least you’ll know Angelina did it.”

You know I never much followed the stars.  And I am so grateful for Angelina Jolie for being brave and going public.  But there is so much more people need to learn.  Nothing comes in neat little packages.  Nothing.

I stretched out my shirt so they could read. “Yes – they’re fake , the real ones tried to kill me!”

are there any other mutations

“I had my double mastectomy.  Last year.  They found cancer.  And I am ok.  Genetic mutations aren’t just for movie stars.  Bravery isn’t just for those who have wealth and power.  There are more of us than you think.”

I was grateful when the tests arrived at the table.  It changed the conversation.  People don’t want to talk about cancer.  Especially not young women with genetically caused cancer.  It makes them uncomfortable.

I am glad Angelina Jolie went public.  I just wish the public would open their eyes to the realities that are undoubtedly right next to them every single day.  It doesn’t take a star.  Just a conversation.

Let’s talk.  Let’s listen.  Let’s learn.  We can save lives.

“Count Your Many Blessings…”

Count your many blessings, count them one by one.  Count your many blessings see what God has done…”

The song has been stuck in my head all afternoon.  I remember as a youth singing the song in church.  I must have sung it plenty of times, because the lyrics are stuck in my subconscious.  And, as things int he subconscious tend to do – they often pop out at just the right time.

rare supermoms

 

A busy weekend full of blessings.

Saturday we celebrated the anniversary of my Mom and StepDad.  25 years is quite a milestone, and we were so thrilled to celebrate with family and a few dear friends.

Mom and Ken anniversary

 

What a blessing that among the guests we had Grandma and Pop, and Grandma Hansen.  Although we missed Grandpa Hansen we were so thrilled to count our blessings together.

Mother’s Day morning I woke alongside my awesome husband.  I was greeted by my beautiful daughter and lots of hugs and kisses.  Some hand made cards, and a few nice gifts and we were off to church.

We traveled after church. to visit with Felix’s Mom and Dad.  We endured the (It could have been worse) Belt Parkway and spent some time with his parents, sister and nephew.  Felix’s Grandma passed away just a few short months ago, so this day was especially difficult for his Mom who was very close to her Mom.

On the return trip we make a quick visit to my mom and got to see the grandparents again.  How many 39 year olds can kiss a few Grandmothers on Mother’s Day?

How lucky am I to hug my Mother – a feisty lovable survivor of cancer and life?  How blessed am I to have her in my life -by my side?

As we headed home, absolutely exhausted.  That song started in my head.

“Count your many blessings…”

HappyMothersDay

I thought of the friends I have who are desperate to be mothers.  The friends who had to struggle to have the children they have.  The friends who have miscarried, and friends whose young children live in Heaven.  I thought about friends who miss their Moms, whose hearts ache every day at the loss – whether it was last week or a decade or more ago.  I thought about my friends who never got the years with their grandparents that I have had.

Shame on me for feeling tired.  How lucky am I to need a list to shop for Mother’s Day Cards?  How fortunate am I to have so much visiting to do that I can sparsely fit it all in?

One might think Mother’s Day is for relaxing – or spending quiet time alone.  But, I am aware that those years will come all too soon.  For now – let me run, and visit, and hug and chat.  Let me relish the moments in a life that is fleeting.

I kissed my little girl tonight.  I held her almost 5 foot frame and cuddled her as best I could.

She won’t be in school tomorrow.  A rampant virus, and her rotten immune system are not a good match.  She won’t plant with her science class the way she likes to.  She won’t play in the yard with her friends.

Tomorrow will be yet another day in the complicated life of a little girl with a multifaceted Rare Disease.  A day of  differences and disappointments.  A day she will handle with the same graceful smile she uses for every other aspect of her life.

My_Greatest_Bles_4bce6cc17bc3d

My daughter is the one who reminds me to count my blessings.

And, oh do I have many!