AHCA, High Risk Pools, and My Child’s Future

I am angry.  I am hurt.  I am worried.

I have stayed out of politics through the entire tumultuous 2016.  I have serious issues with many politicians.  I am not here to talk about them directly.  I am here to talk about an issue that transcends political party affiliation.  I will not engage in a debate about Democrats or Republicans, or the should have/ would have/ could have game that people like to play with each other.

This is far  more serious, and more important than any of that.  This is about my daughter.  It is about her life.  Her future.  And, it is about the lives of millions of American citizens, myself included.

I will concede that there are problems with health care in America.  I will even agree that healthcare the way it exists today needs change.  However, when I look at a situation that needs change, I think it through carefully.  I work through every detail. I weigh out repercussions and ramifications.

The Bill that passed the House today, in my opinion was put together in an attempt to score a “win” for our President.

When millions lose. No one wins.  That’s not just the math teacher in me.  That’s real.

Three years ago I was in a car accident.  It was a terrible situation, and I was T-boned at an intersection.  I will contend to my dying day that the truck that barreled through me was speeding so fast it never should have made it to me before I cleared the intersection.  I had the stop. I stopped.  He never saw me and it took almost a block, in a school zone, for his truck to finally stop moving.  Because the stop sign was mine, I was assessed with most of the fault for the accident.  It made me furious.  I was told speeding could not be “proven” despite the absence of skid marks.  The other 6 accidents that happened at that intersection in the months preceding were not helpful either.  In the end, I was grateful for my life.  I walked away and took the penalty on my insurance.  I paid that accident penalty for three years.  And, while it did not make me happy, I did it.   The accident penalty was annoying, but affordable, less than $200 a year.

The car accident happened once.  It might happen again, but it will not happen regularly.  I am 25 years driving, with one accident and no moving violations.  I have proven I am not a reckless driver.   I have control over that.  Full control, and I take my driving very seriously.

I also take health very seriously.  Unfortunately, there are aspects of my health I do not have full control over.  My daughter and I have a rare genetic disorder called Cowden’s Syndrome.  She is 30 years my junior, and at 13 and 43 we have seen the inside of an operating room close to 45 times combined.  Cowden’s syndrome causes tumor growth.  It carries with it an astronomically high risk of many cancers, most notable breast, thyroid and uterus.  It carries also significantly elevated risks of kidney, colon, skin, and other cancers.  Many of our tumors are benign.  Some are not.  The only route we have to long term SURVIVAL is constant surveillance.

Many doctors recommend surgery to remove things that are high risk.  Thankfully, that suggestion proved life-saving for me in 2012 when a “prophylactic” bilateral mastectomy revealed stage 1 breast cancer.  I was fortunate.

Two months ago I had surgery to remove a benign tumor from my vocal cords.  It was impairing my ability to breathe and speak.

In 16 days my daughter will undergo the 18th surgery in her young life – the 7th on her right knee.  Cowden’s Syndrome carries a high correlation to vascular malformations like the Arteriovenous Malformation (AVM) that grew in that knee.  After 6 embolizations to curtail the blood flow, she now deals with the repercussions of having blood lingering in the knee.  There is wearing away of tissue causing the patella to shift.  There is extreme pain, not just in the knee, but all through her body.  Her right foot stopped growing years ago, but the left one kept at it.  Now a full size apart,  different in length and width, her 5’8″ frame feels the repercussions with every step.  She is regularly at the chiropractor in attempts to minimize pain medication and keep her in alignment.  Pain medication caused such GI distress in 2014 that she spent a week in the hospital.  Cellular changes in the esophagus are not good in anyone.  At 10, with a condition that causes tumor growth, it was certainly another wake up call.  We gladly purchase 2 entirely different shoes every time she needs a new pair.  We are grateful she walks.

That is just the tip of what this child has endured in under 14 years on this earth.  She has had her thyroid removed with 19 nodules and suspicion of malignancy at the age of 10.  We still work to balance levels synthetically.  She had had TWO D&C procedures to eradicate suspicious tissue in her uterus.  She has had a lipoma removed from her back and vascular malformations from each palm.  She has lost her gall bladder.  She fights, stands up.  Moves forward, and gets smacked in the face again.

Soon after our diagnoses in 2011, another mom told me Cowden’s Syndrome requires vigilance.  I got it.  I am on it.  All the time.  And with the GRACE of God alone, we are walking the path the best way we can.

We average between 6 and 10 appointments a month between us.  The copays and travel costs are often daunting.  But, we are fortunate.  We have two good jobs my husband and I tell ourselves.  We have good insurance.

We are careful with every morsel of food that enters her body.  We eat largely organic and non-GMO to let her body use all its energy to stay healthy instead of fighting contaminants.  Even at that she is acutely sensitive to almost all gluten, dairy and soy.

We treat as naturally as we can, often incurring bills, as these treatments are rarely covered.  Yet, still we prioritize health because we realize its value.  And we remember how fortunate we are.  We have good insurance.  We have two good jobs.

My daughter is awesome.  And, not just because she is my daughter.  She is a respectful, kind-hearted young lady.  She has the voice of an angel.  She acts in the plays at school.  She reads for fun.  She swims passionately.  She is an honor student.  She talks about her future, and what she will do with her life.  I have no doubt she has the capability to make a real difference in this world, regardless of her career path.  Today however, I am left to wonder.  Will any job ever be enough?

If the AHCA passes the Senate, we will likely be placed in an unregulated “high-risk pool.”  This is not like my car accident.  This is not a minor inconvenience.  This has the potential to decide the course she will have to take with her adult life, as her health issues will not go away.  We have this genetic mutation with all its risks and ramifications for life.  Lifetime caps, potentially re-instituted will likely be met in her 20s, if not before.

There is no way at all to prove where the mutation came from.  I’d ask you to indulge in a theory with me a moment.  My father, a Vietnam Veteran was heavily exposed to Agent Orange as a Marine in 1967-1968.  My mutation was traced to my father.  He never manifested with Cowden’s Syndrome, but somehow passed that mutation on to me.  Wouldn’t it be ironic, if that toxic exposure in the jungles of Vietnam, in an attempt to fight for his country, ultimately led to this condition in his daughter and granddaughter?  Dad died in 2013, pancreatic cancer that may or may not have been Agent Orange related.  I’m glad he is not here to see the reality that our government may be on the cusp of turning it’s back on his family.

I was raised a proud American.  In addition to my Dad, I have three Grandfathers who were World War II Veterans.  I value the principles this country was founded on.  I am grateful for the freedoms I have in this country.

I have not been raised to use the phrase, “that’s not fair,” but I will ask you to consider a few things.

Last night as I watched the news my head spun as I heard elected officials allege that people with pre-existing conditions have not led good lives.  I am not here to compare, but I will tell you our “pre-existing” condition has NOTHING to do with lifestyle choices.  And if you do not like the site this link came from – scroll to the video.  Hear it from his mouth.

http://www.politicususa.com/2017/05/01/gop-congressman-people-pre-existing-conditions-bad-people-pay.html

I can name dozens of people off the top of my head, as close as within my own family, that would be grossly negatively affected by the establishment of “high risk” pools.

Should a cancer survivor, an MS patient, a diabetic, a person with a brain tumor, a rare heart condition,  a genetic mutation, or countless other conditions be forced to make decision on the path their life should take because they are too expensive?  Are they less valuable?  Do they matter less?

Should we be asked to decide whether or not to keep critical screening appointments, or have access to necessary medication blocked by cost?

We have two good jobs, and this whole thing terrifies me.  But, I will not be controlled by that terror.

This post will reach my Senators today.  Social media can be used for good.   I have a voice.  I will not be quiet about this.

Tell your story.  And if you can’t find your own words, share mine.  Let our Senators know that we are real.  We are not numbers.  We are not a cost-cutting measure.  We have faces, and names.  We matter.  We all matter.

We are determined to remain

#beatingcowdens

We will not be silent!

It’s Complicated…

I was in the stairwell close to the 5th floor of the nursing home where my grandmother resides when the phone rang.  I paused, startled by the ring, and trying to suppress my slightly out of shape panting before I … Continue reading

Inspirational Staten Islander 2016

An inspiration provokes a desire in you to be a better human.  An inspiration can be any age, race, gender or creed.  An inspiration speaks to your soul through their actions, and their behaviors.  Words are always secondary to actions.

A role model may be an inspiration, someone you want to emulate, whether they are family, friend, or famous.  Often we put the word “inspirational” to a sports figure, singer, or movie star, but all too often we are disappointed by those high up in positions of fame and fortune.

Inspirational people, the ones who change lives, tend to be regular people who we interface with often.  Coaches come quickly to mind as inspirational.  Teammates who are there to lift us up and share our shining moments and disappointments come to mind as well.  In some cases teachers can inspire us, by lighting a fire, or a love of learning, or a passion about a topic or a zest for knowledge.

inspiration1

I am fortunate to know many inspirational people.  Most of them would be confused if I named them.  They are typically the people out in the world doing their jobs, living their lives, and passionately giving their all to whatever task is theirs.

So many of you who read these words on a regular basis, inspire us to remain #beatingcowdens.

Last week I was notified that Meghan was nominated as “Inspirational Staten Islander of 2016.”  This nomination was connected to her selection as “Staten Islander of the Month”  in February 2016.  There was quite a list of remarkable, inspirational, every-day people on that list.  I read the article top to bottom and was truly, inspired.

Inspirational Islander Poll

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But, Meghan is MY inspiration.  She is MY reason, my WHY.  I would not lie and ever say she or I are PERFECT, because no one is.  But we do pretty well together, supporting each other.  And, when I’m about done pushing, one look at her face inspires me to keep on keeping on.

There was a week of voting, by people who clearly felt a particular nominee was the most inspirational.  It was a week of watching the polls as family and friends voted alongside. By Monday she had a significant lead.  We were humbled.  By Tuesday afternoon as we sat in an MRI for her knee in Manhattan, she was behind.  Roller Coaster.  It was hard to react with the knowledge that each nominee indeed was inspirational. And,  winning or losing, would not increase or decrease the value of the other nominees inspirational acts.

Voting was to close at noon Wednesday.  I sat up Tuesday night to vote for MY inspiration, as often as I was allowed.  But, at some point I became very anxious, and I stopped and I prayed.  I asked for guidance as to when it was time to just walk away.  I asked for a clear sign.

At about 2:15 AM on Wednesday the 11th, I received a Facebook Message from Destinee Moe.  This young lady was running the poll right behind Meghan and I just wasn’t sure how it was going to end.  This is a text of the message.

Hello Mrs.Ortega I’m Destinee Moe one of the nominees for Inspirational Islander Of 2016. I just want you and your daughter to know how truly inspiring she is! I could never be as strong as Meghan 😊she going through a lot and still manages to smile! It’s truly an honor to be able to run against someone so strong 🙂 I wouldn’t want anyone else to win this race 💯 she truly inspires me to be a strong young adult ! Best of luck to both of you and hope everything is well with Meghan ❤️ keeping her in my prayers.

And I cried.  Right there in front of my computer screen.  There was the sign I had prayed for.  There was a soul so inspiring she was looking for the good in others she was racing against.  There was a meaningful inspiration.

inspiration3

I responded to her as best I could.

It’s funny I would catch your message at this hour, as years of parenting a sick little one, have left me able to function on not too much rest. I really appreciate your message, as everything I have read about you indicates you are of the same strength of character as my daughter. It is inspiring to me when young women like the two of you show leadership qualities at such a young age. This whole experience, win or lose, has been an incredible journey for her. Today she learned to balance her morning swim, with an honors schedule, and then a 2 hour MRI for the knee that caused her 6 surgeries and still gives her grief, followed by 2 more hours in traffic, significant homework, and keeping a close eye on the voting in between. This young lady I have is truly my inspiration, as her early diagnosis indeed saved my life. However, each story I read was inspirational and it renews my faith in people, and Staten Island. All the best to you as well. It will be behind us all in just a few hours. I have no doubt yours will be a name of influence to look for in the coming years. Stay true. All the best, Lori

She replied once more and I went to bed soon after.  When I woke the next day, Meghan held onto a lead into the noon cut-off.

By 12:45 there was a congratulatory message from Destinee:

Congratulations ❤️ I really hope this pushes her even more to be the strong Inspiring young lady she is. Have a bless day , Destinee

Meghan won the popular vote as “Inspirational Staten Islander of 2016,” and we all got a clearer sense that inspiration is all around us, sometimes coming out from the most unlikely places.

inspiration2

After all she endures on a regular basis, my Meghan’s one goal was to further awareness of Rare and Genetic Diseases, while getting the word out for her upcoming fundraiser.  Multi-tasking is necessary to follow her schedule.

2017 Event Flyer

2017 Event Flyer

Meghan remains humbled by the gravity of the congratulatory messages coming her way.  Just as she was touched deeply by the message from the nominee closest to her in the polls.

There are so many life lessons, so many inspirational people, so many teachable moments – if only we look.

Meghan attained the title of “Inspirational Staten Islander 2016” and she will use it as best she can to raise awareness of Cowden’s Syndrome, PTEN Mutations and other Rare Diseases.  She will also walk away with a few valuable life lessons.

We remain

#BeatingCowdens!

Click HERE to read the ARTICLE! (It’s a really good article! 😉 )

 

 

 

On Your 13th Birthday…

 

scan0003August 9, 2016

Dear Meghan,

As I sit to write this some time in the middle of the night, I am reminded of the early years, when so many of the middle of the night hours belonged to the two of us.  Yes, Meg, I said YEARS.

lori & meg

You struggled my girl, but your determination was evident early, like the day the NICU nurse called you feisty.  She was right.  And it has proven to be one of your finest and most valuable attributes.

When I look back on pictures of those early years, it doesn’t seem all that bad.  I guess I never had time or desire to photograph some of those tear-stained days.  And maybe. if it wasn’t for the colicky cry seared into my brain, I might have even come to forget that you considered sleep optional, crying and screaming mandatory, and that carrier pouch a requirement for all things.  At one point we had even taken to calling you a kangaroo baby…

You and your tired Mommy!

                               You and your tired Mommy!

But, I look at the babies in those pouches,  And I think to those mother’s “enjoy it.”  You might find this hard to believe my dear, but there is not a single minute I would change or do over.  Every step along this journey with you has BEEN the journey.  And I have the deepest gratitude that God selected me to be your mother.

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The path hasn’t been easy.  Sometimes it’s been rocky, and a little unsettled.  Other times its been like traveling through fire. On a bicycle.  With no handlebars.  Backwards. But, I think we’ve all found pieces of ourselves we never knew existed, and there is a family bond between you, and me and Daddy that so many envy.  Not for what we’ve done or where we’ve been, but rather the fact that we have done, and continue to do it all together.

At eight years old, you were tossed a diagnosis of a Rare Disorder, a 1 in 200,000 PTEN Mutation called Cowden’s Syndrome, that has leveled many grown adults.  But, by eight years old, you were already seasoned at doctors, OT, PT, and speech.  You’d been there, and were still doing dome of that.  At 8 you were intimately aware of what it meant to spend hours waiting for doctors, and you had a clearer visual of an operating room than anyone should ever have.  So really, in reality, that diagnosis just pushed us in the right direction to continue to help you become who you were meant to be.

It’s rotten to be the “unusual one”  the one with all the risks and the need for that “hyper-vigilant” surveillance.  But, I’m thankful.

See without Dr. Jill to push us to your diagnosis, without all those things falling into place, it’s likely I wouldn’t be here to write this. Your diagnosis led to mine,  and while I am intimately connected with the reality there is no guarantee of tomorrow on this earth for any of us, my heart is sure that you, my angel, my gift, you my dear saved my life.

I watch you with each passing year, and the challenges pile on top of themselves.   And we both sometimes want to stop the presses and scream, “IT’S NOT FAIR” and the top of our lungs.  but then we laugh.  “Fair” is just a silly word anyway.   It’s not the perspective we use.  It’s not worth our time.

You approach this birthday with 17 operating room trips under your belt, and too may ER visits and, tests, and hospitalizations to count. You have had to make decisions, and think thoughts that are beyond the scope of what you should contend with.  But with grace and dignity you proceed, because none of that is what defines who you are.

Grace,. Poise. Strength under pressure.

               Grace. Poise. Strength under pressure.

 

Despite unimaginable pain, you press on.  Your body would not allow for dancing school or soccer.  But the competitor in you was not to be silenced.  Running was out of the question, so now you “fly,” in the water, 11 months a year 4-5 days a week for hours.  You pull energy out of the crevices of your toes to push through when most would curl up and give up.

First season swimming, a few weeks in. Spring 2013

             First season swimming, a few weeks in. Spring 2013

2016 Working on her "fly"

                              2016 Working on your “fly”

You press on in the community, focused to raise the necessary founds the PTEN foundation will need to create our patient database.  But, you will not turn your back on the charity where you began, Global Genes, “for the babies who can’t speak for themselves,” you tell me.  You make flyers, select venues, advertise and collect raffles.   You speak at schools and organizations across the Island who will have you, to raise awareness that rare diseases are everywhere.  For the last 2 Februaries we have celebrated Rare Disease Day with almost 200 people, gathered because you have a mission.

Youngest “Woman of Distinction” recognized in Albany by Senator Lanza in May.  Proudest parents.

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I watch you talk to people and I swell with pride.  When you’re intermittently stuck in that wheelchair you hate, you decided to help the doubters, the starers and those passing judgment.  A simple business card with a phrase you helped create “Cowden’s Syndrome – Rare. Invisible. Real.”  It starts a conversation, or it ends the behavior.  Either way you manage with grace to rise above.

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You take the high road so many times a day.  I know it’s not easy.  And I know there are people in your path every minute determined not to make it easy.  But, truth be told, as we are learning, there are others out there.  There are real people, at swimming, at youth group, at SICTA.  There are real people who are finally recognizing that you are pretty spectacular. And I don’t mean that in a ‘who is better than who’ way.  I mean it in it’s best sense.  Everyone is spectacular in some way.  You just learned it a little early.

As you turn 13 this week, I wish you so many things, from the depths of my heart and soul;

*Never lose the magic.  Ever.

ALWAYS remember THAT feeling.

                                        ALWAYS remember THAT feeling.

*Never compromise yourself for anyone.  Remember that doesn’t mean to be brick wall stubborn.  It means to keep those morals.  Rise above.

*Always remember no matter how wild and crazy the world gets, you’ve got two parents who will love you regardless… and that is a PROMISE.

*Smile, sing, laugh, act, dance, be sarcastic, and sensitive, and guarded and silly, with a healthy touch of humor thrown in.  Do it all always with respect.

*Continue to constantly take every obstacle tossed at you, and it toss it back, or walk past it and move on. When they tell you you can’t, find a way to show them you can.

*Never let anyone make you feel less than.  You, you are enough.  You are always enough.  God said so, and He is smarter.  Trust.

*”Be the change you wish to see in the word.” – Ghandi

hope_balloons_small2

Your teenage years will be a giant path of self-discovery.  It won’t always be smooth.  But nothing is.

Be you, and it will fall into place.  And in the off chance that none of that works, I’m not going anywhere.

I love you from the bottom of my heart.  You truly are the child I was meant to have, and there is NO ONE I’d rather be #beatingcowdens with, than YOU!

Happy 13th Birthday!  You will always remain, “My Most Thankful Thing!”

I love you ALWAYS,

Mom

Thanks for bringing out the best in me. I love you more than you know.

        Thanks for bringing out the best in me. I love you more than you know.

Body Betrayed

The first time I felt the pain it was last summer.  It was under my right implant, and from my armpit a bit down my side.  The pain lasted a few days and then eased itself into a chronic state of discomfort.  I went from almost 4 years of barely noticing, and sometimes forgetting the silicone implants that had replaced the breasts in their earliest stages of cancer in March of 2012 to thinking about them all the time.

Now I knew the right one was there.  And it was bothering me.  For physical, and deeply psychological reasons.  It was getting in my head.  Messing with my focus.

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I went to see my plastic surgeon in November of last year.  I adored her.  I wanted her to make it better.  Her words were reassuring to a point.  The implant was intact.  There was some minor movement.  I should get it taken care of but it wasn’t an emergency.

Then there was the bombshell.  She was no longer accepting my health insurance.  I definitely cried right there in the office.  She cried too as she apologized, handed me the name of the doctor I needed to see and scurried out of the office.  I still adore her.  But, I’m sure I’ll never see her again.

bomb

So, faced with the reality that I needed to start over, on a journey I wanted to forget ever happened, I did the logical thing.  Nothing.

I lived in a state of denial for months.  And slowly I started to restrict the activities I would do with my right arm.  Certain basic tasks would make it bothersome.  Fitness-wise, push ups, planks, weight lifting, and even the elliptical were out.  I no longer trusted my own body weight on that arm.

denial

One day in December I mustered up the courage to call the office of the new doctor.  It took a lot.  I trembled.  I had my calendar set up for January and February.  I was ready to schedule that consult.

“Late March…”

I heard nothing past that.  After I was told the earliest appointment I could get for a consult was late March.  I hung up the phone and did what I do when excessively frustrated.  I cried.

When I saw my breast surgeon for our annual check up in February, she noticed the subtle problem.  She asked who was looking at it.  She also proclaimed it, ‘not urgent.’  I told her about my experience trying to get an appointment with apparently the only plastic surgeon that does breasts and takes my insurance left at this hospital.  She vowed to have her scheduler help me get in.

I met with the scheduler.

I never heard from her again.

No-Phone-Zone-2

March came and went.  Life was busy.  Meghan was in and out of surgery, Pop had been so sick, Grandma was struggling, we had the fundraiser…I found a reason not to call every single day.

Then I really wanted to work out my arms again.  Walking was getting boring.  I mustered up the courage in April to call.

July 18th.

I had to take it.  I cried again.  I tend to cry most in my life when I am frustrated.

I brought Mom with me to this appointment.  I never need another pair of ears.  I did this day.  I was a wreck.

The doctor was wonderful.  Kind.  Sensitive.  Funny.  Everything I feared he would not be.  I exhaled.  He said it was again, not an emergency.  But, he saw my issue, understood my discomfort and agreed at my convenience he’d try to fix it.  He ordered one test for a sensitive spot under my arm, and asked me to try some physical therapy when I could.

I talked it out with my mom.  I talked it out with my husband.  After waiting almost a year, I was ready to get it done and stop favoring my dominant arm.

e cars schedule

I called to make the appointment for the test.  Except it had to be done in the hospital.  And it needed insurance pre-authorization.  And I tried for one solid week to get in touch with this doctor’s office staff.  Three Emails, 2 phone messages and several canceled appointments, I finally got a human.

I got them moving quickly, and they got the insurance authorization immediately.  I scheduled the test, and it was fine.

Then I called to schedule the surgery.  I was thinking I could still make August.  I was wrong.

What about September?

UGHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I took out the calendar once again.  We have 4 days off in October…  No luck there.  No, he doesn’t work December the week I’m off.  And in February we have the fundraiser…

Looks like once I calm down I’ll schedule for Spring 2017.

When the time came to have the double mastectomy I opted for the quickest route.  I was out of the hospital with reconstruction complete in 28 hours.  I wanted this done.  I was so incredibly fortunate not to need treatment.  I was grateful.  More energy to focus where it mattered.

Except once cancer has lived inside of you there is this uneasy feeling that can not be explained.  There is this knowledge that somewhere in your body those cells did what they were not supposed to.  There is this feeling that you were violated and betrayed by your own body, from the inside out.  It damages trust deeply.  It’s hard not to trust your body.  It can really mess with your mind.  So understandably, I was interested in functioning without that thought process.  I had become adept at ignoring my scars and “nipple-free” implants.

hidingcells_1200x800

Until I started to feel them.  Every damn day.

This is minor.  This can be fixed.  And it will be.  Just not in a time-table anywhere close to my liking.

I picked up the free weights again today.  Really light.  In my chair.  What’s the worst that happens?  Really?  If it becomes an emergency they have to move faster.

Otherwise, I’ll balance that full-time job, that beautiful, active 8th grader, and a boatload of afterschool activities.  I’ll try to get out of my own head.

But, no matter how vigilant, or how confident…  thoughts of the potential renegade cell, lurking like a thief in the night never quite go away.

#beatingcowdens is a full-time job

Justifying Our Existence

There was a post that showed up in my news feed this week from http://www.themighty.com.  Read The Secrets of People with Chronic Illness here

I can’t seem to shake some of the thoughts from my head.

chronic illness

As I write, school ended for the summer 9 days ago.  In those 9 days we have seen 4 doctors between us.  There are 9 more SCHEDULED in the month of July, including a biopsy for Meghan on the 22nd.

And, while I did take some time over the weekend to reconnect with some dear friends, and I have accomplished a few mundane tasks like routine car maintenance, the vast majority of every moment of those 9 days has been spent justifying my existence.

Fortunately, I have enrolled Meghan in a theater camp where she is from 10-4, spending some time with kids her age.  Of course, the wear and tear on her body, even after only 3 days is evident.  She struggles with pain so badly.  On her feet, determined to fit in.  Determined for me not to say too much.  Sometimes I have to let her go.  I have to let her try.  I have to let her decide.  But, it hurts.  It hurts her, and it destroys me to watch her battle with her body.  I watch her put that game face on in the AM, and not take it off until after swim practice follows camp.  No one will ever tell me she is anything but driven.  But, no one would ever know to watch her…

chronic illness2

Usually by this point in the summer my work bag is unpacked, washed and tucked away.  Often my lesson plans for September are mostly framed out.  I am yet to take the list I frantically formed as I packed my room the last day of school out of the bag.

Instead, the yellow legal pad sits near my computer.  I write, and cross out, and rewrite, as I call, obtain records, set appointments, and clarify tests required by various doctors.  I rearrange schedules to allow for coverage for Meghan as I trek to my own appointments at the most inconvenient times.

On the 18th I will meet a new plastic surgeon, as the old one no longer accepts our insurance.  I never imagined needing a new plastic surgeon only 4and 1/2 years post op from the mastectomy, but it seems I do.  I’ll wait until I meet him to elaborate on that…  Sometimes, although not often, I do feel like this…

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I can often count on 4 hours minimum round trip for the 10 mile trek.  Never mind the cost.  We just don’t even add it up.  Instead, we thank God for our jobs and the insurance we do have.

I received a phone call yesterday from a lab that was running insurance information to obtain testing for Meghan requested by one of her doctors.  Except it’s not covered at all.  $16,000 they said.  I, who denies my child nothing politely said, “we’ll find another way”.  And we will.  Because that is just insane.

I’ve sent 3 emails to the office manager of the office doing her procedure on the 22nd.  I simply want to know what date to leave free for the follow-up.  I know there will be one, and I want to plan a few summer adventures in the time that my fish will have to be out of water.  I also asked for the pathology from her December procedure.  For about the 8th time.  Just keep adding checks and dates to the list.

When things get really bad, like with the bills I’m fighting in collections, they get a folder of their own.  The SUPER troubling places, like the mail-order pharmacy, have a notebook.

We do our best to stay upbeat.  We count our blessings regularly.  We know it could be worse.  We know the anguish others suffer far surpasses our daily struggles.  But, no matter how much we focus on a positive attitude, and believe me we do, it does not decrease the pain, both physical and emotional.  The struggle is real.  Whether we like to admit it or not.

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I reached out to our genetecist this week.  Darling man said he would always help, and didn’t want us to waste a trip on him.  I told him I was having trouble with my voice.  I’ve been getting very hoarse for 8 weeks or so.  No infection.  Three allergy meds on board.  But, I do have Cowden’s Syndrome, that tumor growing thing I sometimes forget belongs to me too.  And I have a history in the neck.  A 3.5 pound lipoma in 1988, and multinodular goiter on the thyroid in 1993.  Both removed.  Both benign. But…

He referred me to a head and neck surgeon.  I finally mustered up the courage to block out at least one more day of summer, and call for an appointment.  I was met with the inquisition on the phone.  I never got past the receptionist.

“This doctor is a head and neck SURGEON.”

“Yes, I know he’s a surgeon, I was referred for consulation.”

“Well, he doesn’t just SEE people, you need a diagnosis and a referring doctor.”

“I have both.  C-O-W-D-E-N Syndrome.  A mutation on the PTEN gene that causes benign and malignant tumor growth.  I was referred by my genetecist, also a doctor at your hospital.”

“Well, what tests do you have?  He will want a report, a CD, something…”

Sigh.  I just don’t have the fight in me today. “Ok, you win.   I’ll find someone else.”

“Come back to him when you have a diagnosis.”

 

Whatever.  Just whatever.  Sometimes I get a little tired.

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Thats when I shake it off with a quick walk.

I emailed the genetecist back.  I’ll wait.  Again.

I have this pool in my backyard.  And plenty of people I’d like to reconnect with.  And some lessons I’d like off my plate.  And a book I’d like to read.

I’ll get there.  In the mean time, I’ll be at my computer.  Emailing.  Arguing.  Advocating. Communicating.  Researching.  Justifying my existence, and

 

#Beatingcowdens with whatever it takes.

Punched in the Stomach…

…over and over and over again.

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Sometimes that’s the best way I can think to describe it.  There are days, so many days, when it’s like a sucker punch that takes your breath away.  It’s not going to knock you to the floor.  You’re stronger than that.  But, man, it knocks the wind out of you.

First, it’s the drive.  The traffic.  The hours spent headed to the appointment.

Then it’s the “hurry up and wait,” as you strive to be there for your 2PM appointment that COULD NOT be changed to later.  Only to wait until after 3 in the waiting room.

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After that it’s the news.  No matter what the appointment is, a Cowden’s Syndrome appointment rarely ends with overwhelming optimism.  Well, because they are all so unsure.  So they are afraid.  And I get it.  But, then they tell you the parts they DO know, and you sometimes just want to sit in the corner and bang your head.

THEN after all that GOOD fun, is the drive home.

Usually all in all about 5 hours roundtrip.  Whether it’s Manhattan or Long Island it doesn’t really matter.  It’s 5 hours at a clip that you’ll never see again.  Plus hours and hours analyzing…

About the only GOOD thing that comes from all these is the time spent chatting in the car.  Because my kid is pretty cool, and I enjoy her company.  I just wish we had more time to be together, at the beach, or a concert, or somewhere fun…

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Today it was the orthopedist.  He operated on Meghan’s knee in May of 2015.  It was the 6th surgery on that knee, all ramifications of a pesky AVM (arteriovenous malformation) wedged somewhere under the meniscus.  After the surgery there was PT, then a 6 month follow-up.

In November he released her from PT, and asked for another 6 months.  In April he was so bothered by what he saw he brought us back in 2 months.  He was troubled by her muscle spasms, and her generally being unwell.  The conversation that day led us back to the hormone she was on after the December d&c, the one with the precancerous cellular changes.  The medicine that was supposed to help keep the uterus in check.  The medicine that seemed to come up an awful lot in April as the source of many problems.  We labored over the decision and consulted almost every doctor, but ultimately decided to ditch the medicine and hope for the best.

Today the muscle spasms were gone.  Evidence that they were caused by the hormone.

But, there was another pile of information to digest.

Sometimes it’s so hard, because you ask questions, and you just don’t always get the answers you want.

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What about that right leg, will it ever match the left in strength?  Do you think the foot will catch up?

No, it’s not likely.

Impact activities, even walking over a half mile, cause knee pain.  Will this ever resolve?  Can she do anything to help it resolve?

No.

So, what do we do when we have to walk far distances?

A wheelchair.

And the conversation continued like that.  He is actually quite well spoken, but today his words hurt.

He is a good doctor, a good surgeon too.  But, he is honest.  Necessary,  And painful.

We got some suggestions for strengthening.  And a script for a refresher with our favorite PT.  Progress will happen.  It will just be slower.  It will take longer, and harder work than any of her peers.

We don’t use the word fair anymore.  It’s all relative.  Nothing is really “fair.”  But, some days it’s harder to find the bright side than others.

Some days, even when the doctor tells you it’s not right that someone your age should have so many limitations, it doesn’t make it any easier to hear.

Because the reality is what it is.  There is both gratitude and pain in the mobility she has.  Her drive, her focus, extends beyond limitations.  She wants to be free.

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Yet, somehow even on the toughest days, I have solace that there is a plan.  And it will continue to unfold for both of us.

Tonight we recover from a few sucker punches with chocolate cookies and coconut milk ice cream.  Tonight is not for the bright side.

Tomorrow will be different.  Tomorrow is school.  Full of people who do not know, or who are virtually unaffected by the realities of Cowden’s Syndrome.  And tomorrow is drama.  And tomorrow is swimming.  Tomorrow will be too busy not to press on.

Tomorrow will be for working on ways to keep moving forward.

Tonight will be for resting.

Tomorrow is for

#Beatingcowdens

N.O.S.E. an Acronym that Makes Sense!

So many things in life make no sense at all.  I don’t need to fill in those blanks for you.  No doubt you have a bunch of your own things in mind.

The illogical is part of our existence here.  What we do with it is what defines us.

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Meghan’s right foot stopped growing a few years ago.  I didn’t notice for a little while.  She was already wearing a size 9 in the 5th grade.

She had had 5 surgeries to embolize an AVM (arteriovenous malformation) in her right knee.  At some point they theorize that by slowing the blood flow to the AVM, the blood flow to her lower leg and foot also slowed, stunting its growth.

Now, on the surface that may not sound like a big deal, and I guess for a while it wasn’t.  Most people have feet that are slightly different sizes, many a half-size off.  Most people are still able to fit them into one pair of shoes.

But the left foot kept growing.  Right now it’s stalled at a 10.  We can’t be sure it it’s done.

The ramifications of this began to have far-reaching effects. The different foot size adjusted her entire stride.  The smaller foot is weaker, and naturally over pronates.  There began to be back and shoulder pain…

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There was one more knee surgery last May – to clean out some residual blood and quarterize a few spots in the knee-joint.  That proved to make the knee even a little weaker.

There came a point where each foot needed its own pair of shoes.

Keeping her in a pair too big would compromise the weaker AVM leg.  Putting her in a pair that was too small was just impractical.  So we began to buy shoes in a 9 AND a 10.

Now we consider ourselves fortunate to be able to buy two pairs of shoes at a clip.  We have only one child, and I find good shoes to be a wise financial investment.  Buying the two pairs is never what bothered me.

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My trouble came with what to do with the other shoe.

I threw some away, but that didn’t feel right.

People, not thinking it through, directed me to odd shoe websites.  But, the odds of me finding a perfect match were slim to none.  It didn’t make sense for us.

So, the shoes began to stack up in the basement.

Some internet searching brought me to National Odd Shoe Exchange (N.O.S.E,)  And a million bells and whistles went off.  Here was a real, 501c3 charity that accepts “in kind,” or actual SINGLE SHOE donations.  They pair them with actual people.  They work with amputees.  They work with real people, registered in their database, and they send them shoes!     History of NOSE

And, since they are a registered 501c3, our donation, as well as any postage, are fully tax- deductible.  An added, unexpected bonus.

So, today I mailed a box to Arizona.

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In it were three “pairs” of shoes.  10s for the right, 9s for the left, just the opposite of my girl.

And somebody, somewhere, or maybe even several “somebodies” will benefit from Meghan’s adversity.

It seems almost ironic that as I write tonight we are nursing a left shoulder that “froze” today,  more than likely the result of the
“off sides” stride.

It locked up in the pool.  During the last practice before the big meet this weekend.  She has trained so hard.  She fights every obstacle head on.

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Feisty.  Tenacious.  And in pain.

Tomorrow there will be more ice.  More stretching.  More anti- inflammatories.

There is no pause for this young lady.  Life keeps careening from one obstacle to another.  Yet, she walks straight and tall and with her head high through it all.  Counting her blessings.  Growing up too fast.

So many things make no sense at all.

But for us, tonight, the knowledge that in a few days time 3 “pairs” of brand new shoes will be available to someone…

Well for us, that is a bittersweet way to find some sense in this big mess.

#BEATINGCOWDENS

#ONESTEPATATIME

 

In a Dark Room…

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I’m thankful that some nights she still invites me to chat with her in her dark room

Late

After she should be asleep

I’m thankful that we can relate to each other

Different – incredibly different

Yet so much the same

Yesterday I hurt a lot

An unusually extra tough day for me

But I looked at her and I kept on plugging

She knows no other way and leaves no other option

I hate that she bears this burden

There are days it could destroy me

But it doesn’t

She simply motivates me to keep going

She pushes me to be a better person

A better mother

A better human

Often without saying a word

Sometimes in her dark room we’ll share

What we worry and wonder about

Sometimes we tell things we’d never tell another

Sometimes we laugh

Sometimes we cry

Mostly we learn things

Still after all this time we learn things

Like yesterday when I told her that I am luckier because I have her to keep me going

And she looked at me quizzically and wondered aloud

Why do you think I keep going?

And in that moment there was even more clarity

Daughters and Mothers

Mothers and Daughters

We worry and wonder

We argue and spat

We chat and share

We battle

Not each other

But this disease

Together

Different but the same

Pain, surgery, worry, wonder, loneliness, anticipation, anxiety, and sometimes terror

I hate every moment of this road she has to travel

But I am selfishly grateful for the quiet, determined way

She keeps me balanced and focused on what matters

So we can help each other

And remain

#Beatingcowdens

FOREVER

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A Letter to Me as a “Mommy-to-Be”

Dear 30 Year Old Me on Mother’s Day,

Listen up.  Yes, you – acting as the general contractor; living through and participating in your house overhaul, while carefully moving your pregnant belly out-of-the-way.  Do me a favor and sit down a minute.  You don’t sit much, but you focus better when you do.

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Life is hectic, I know.  You’re working full-time, working on the house full-time, and trying to wrap your head around this Mom thing.  You have a lot to do.  I get it.  There are papers to process, contractors to fight with, lessons to plan, furniture to order, walls to paint, and tests to grade.  There is this small, ok, large human growing inside you.  There is so much to think about, but there isn’t time to stop.

Do me a favor, and make time?  I mean it.  Force it in.  Make time for you and your husband to just be.  Make time to laugh.  Make time to rest.  Make time to get in the car and drive the not so far distance to see the handful of friends that have always had your back.  Because, believe it or not, your new life will make this chaos look like a day in the spa.

Those friends, they are high quality.  And you will always have each other’s backs.  But, they will have husbands, and children and houses, and obligations of their own.  Before you know it you’ll be keeping in touch with each other’s lives via Facebook and blog posts.  (Yes, you’ll have a blog, but I’ll explain that later.)  You’ll regret not seeing them more.  Not sneaking in a few more dinners out, or some drinks and dessert.  The time for that will come again, but it’ll be much later.  And sometimes you’ll get lonely.  Really lonely.

While you’re still sitting down, reign in some of those day dreams about the smooth way everything is going to go once the baby joins you.  Broaden your definition of healthy into a “spectrum.”  Refocus yourself onto the important jobs of motherhood; guardian, advocate, supporter, guide, confidant, conscience, role-model, nurse, doctor, therapist, just to name a few.  Don’t bother looking at Pinterest.  Your life doesn’t work there.  Actually, MOST lives don’t work there.

That baby inside of you isn’t going to stay there forever.  One day it’s going to make its way into the world in grand fashion.  And she, (yep, you’re wrong, it’s a girl) will change your life in ways you could never imagine.  By the way, if you can get through to that doctor before the induction, try to save yourself the bags of Pitocin and the HOURS of labor.  She’s got a big head just like you.  The C-Section is inevitable.

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And, she’ll be the biggest baby in the NICU.  Right from the start you’ll hear about her feistiness.  The nurses don’t lie.  Right from the start you’ll have to change your perceptions of how this mothering thing was going to go.  From the very first hours you’ll have to learn to go with the flow because you’re about to set down a path you could not have imagined.

For about 18 months you will sleep rarely.  She will cry and scream and yell in ways that your family will forget, but you will remember for life.  You will learn how to function on raw nerve.  You will use the baby pouch you got skillfully to sneak in an hour or two of sleep without dropping her.  Because you know she’s not “spoiled” even though she only rests on top of you.  You know it’s more.  You know it’s her belly and you will hang on when others want easy answers and excuses.  You will fight for her because you are her mom.  And THAT is what mothers do.

By the time she’s one there will have already been a week-long hospital stay and a surgery that left the doctors “perplexed.”  This is only the beginning. Dig in hard and sharpen your instincts.  Trust yourself.  Ask tons of questions.  Learn early that doctors, and therapists are a dime a dozen.  Settle for nothing less than the best.

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Because those therapists, those Early Intervention therapists, and the Physical Therapist you’ll pretty much use for life, will have some of the greatest influence on your parenting, and on the health and growth of your girl.  They will change your world.  Listen carefully and learn.

This girl is going to get stuck like a pin cushion and shuffled from specialist to specialist.  She’s going to confuse them, and amaze them.  She will start to retreat into herself.  All of a sudden she’ll be two, and not making a word.  Hang on and don’t let her go.  She’s not autistic, and never was, but she is medically complicated and she is not well.  You will try as hard as you can.  You will read, you will frantically research.  You will seek out expensive alternative specialists.  You will even record her agony for your husband so you can press on for her care as a united force.

You will fire pediatricians, doctors and specialists alike.  You will slowly find your confidence.  You will become a master record keeper.  You will try things that are “different” just to see what happens.  You will step over your toddler for two weeks as she tantrums on the floor when you take away her milk.  You’ll worry that she’ll never eat again.  You’ll get angry when you realize that the food she’s eating is making her more unwell.  You’ll learn about the immune system and the GI tract.  And by the time she’s two and a half you’ll get a whole lot of babbling.  By the time she’s three and a half the speech therapist will cut her loose.  Her belly will be flat.  She will be much calmer, and she’ll be in a regular preschool with some “transitional and sensory issues.”

Her baby sitters will be tortured by your need to have every detail written down.  Because, like a detective you will spend nights poring over things to make connections.  You will have volumes of daily diaries, and binders of lab results.  You’ll never leave and office without uttering the words, “Can I have a copy of that?”

She’ll grow physically and intellectually.  You’ll cherish every moment extra, because you’ll know from where she came.  She’ll have surgery after surgery, and a few more hospital stays.  There will be scans and specialists to check that knee pain, the joint pain, and every other bit of chronic pain that will plague her young body.  It will hurt you to watch, but you will be strong for her.  You will not give up.  You will not give in.  You will press on.

And then in third grade there will be that genetic diagnosis that will turn life on its ear again.  “Cowden’s Syndrome,”  a “PTEN Mutation.”  And you will start to study genetics.

But while you are studying you’ll learn about the health risks and you’ll focus on solutions.  You’ll try desperately to wrap your head around the realities of this tumor provoking condition.  You’ll hear the word “cancer” more times in reference to your girl then you’ll care to count.  Then, you’ll get that positive test result too.  That day when guilt takes over for a while.  That day when you realize she doesn’t just have your hair and your smile.  She also had this syndrome because YOU have it too.  Don’t hang out in the pity party for too long.  It’s not good for either of you.  Trust in the grand plan.  

Oh, and those relatives you love so much, the parents and grandparents, they won’t be around forever.  I know that’s hard for you to imagine, because there are so many, and they are ALWAYS there.  But, one day it will end.  Do me a favor and take a few extra minutes and cherish each of them.  Even if you’re really tired.  Swing by.  Say hi.  Pick up the phone.  You’ll be glad you did.  I promise.

Days will blend into weeks, and weeks into months, and months into years.  You’ll blink and wonder, but there will be no time to catch your breath.

Because it won’t be long before you’re in surgery for a double mastectomy.  Yep.  With lifetime breast cancer risks in the high 80%s, and your own history of 7 biopsies, this PTEN diagnosis took the decision from your hands.  Don’t stress over it for too long.  You’ve got good instincts.  The double mastectomy with immediate reconstruction will be one of your best decisions ever.  Get home to the angel that saved your life.  The pathology report will confirm cancer was lurking in the breast proclaimed clean by MRI a month prior.  You don’t need perfect breasts.  You need vigilance.  This beast will nip at your heels through a complete hysterectomy weeks later.  It will swipe at you.  Take care of yourself.  Recover quickly and completely.  Lose some weight.  Fill your body with excellent nutrition.  This is going to be a battle and you’ll need all your strength.

One day you’ll count and realize there will have been 16 surgeries for your girl.  There will have been 16 times when she was walked into an operating room, and put to sleep.  16 times when you’ve prayed harder than you’ve ever prayed in your life, and 16 times when you know the pure joy of gratitude when you see her awake for the first time when it’s through.  And you’ll know in your heart 16 is only the beginning.  But don’t get caught up in that.  TRY to stop putting it all together.  TRY to just breathe, and enjoy the moments as they come.  

One day you’ll look at your baby, all strong and determined.  She’ll be taller than you and you’ll wonder how it went so fast.  She’ll be mature, and so smart.  She’ll be talented and compassionate.  She’ll still be feisty and competitive too.  She’ll be as athletic as her body will allow.  She’ll swim and sing and be active in fundraising and outreach work too.  She’ll be passionate about raising awareness for Cowden’s Syndrome and other rare diseases. She’ll encourage you to tell the story of the struggles you two face.  Even though she’ll have a deep understanding that everyone has something, the rarity of this syndrome will cause her to implore you to get a real-time record out in the world.  You’ll blog diligently, as often as you can, making sure to have her edit most of your work.  

She’ll struggle sometimes, and so will you.  Sometimes you’ll even argue.  But, it’ll be the most amazing relationship you can imagine.  You two will spend more time together than most other mother-daughter duos.  Most of your time won’t be on “fun” adventures, but you’ll have hours and hours to talk and get to know each other.  You’ll realize she’s spectacular.

If I had to pick the most important advice, it would be to tell her she is enough.  Be sure she lives and breathes the reality she is loved.  Deeply, and sincerely.  Make sure she knows deep in her heart that she is enough, and all she ever has to be is who she is.  Middle school is tough work, and she’ll need to believe this in her heart from the very beginning in order to remain true to herself during those years. 

It’ll be a busy 13 years.  But, every single moment will be so worth it.  Trust yourself.  Love each other.

Mother’s Day is really every day that you are hugged, loved, and respected.  If you put the time in, it will pay dividends later.

I’m not sure what the rest of the journey has in store for us, but I’m sure we’ll be just fine.  We’ve got a pretty awesome kid, and we are #beatingcowdens together.

With love,

Your 42 Year Old Self

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