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!

Richmond County Savings Foundation

If you were with us at “Jeans for Rare Genes” you heard me announce we had received a grant for $2500 from the Richmond County Savings Foundation.

This story Inspirational Staten Islander to host Fund Raiser ran on February 4th.  On February 8th I was contacted by the Richmond County Savings Foundation.  The story had been read, and it was suggested we apply for a grant on behalf of the PTEN Foundation.

We are relatively new to the fundraising thing, but with a lot of help, we got on track and completed the application.  The PTEN Foundation President, Kristen, spoke with them to get the 501c3 papers squared away.   And – about 10 days later we were notified of a $2500 grant, awarded to the PTEN Foundation!

We included the grant money in all our fundraising totals for the event, but today we got to go to the office to receive the check.  We got to meet Mr. Cesar Claro, who noticed Meghan’s story.  We got to meet Ms. DeSapio who helped us so much via phone and Email.

Meghan took the day off from school, because my speaking time is so limited, and because she’s the reason all this happens anyway.  It was just right for her to be there.

We gathered in a conference room with about 10 incredibly inspirational people.  I loved how professional, yet casual the whole experience was.  Amounts of grants were not discussed.  Checks were distributed in sealed envelopes, but first , everyone spoke about why they were there and how the grant was going to help.

Meghan spoke a little about Cowden’s Syndrome, and how we are hoping the PTEN Foundation will be able to inspire research on our disorder.  She did great, as usual.

We got to hear from a teacher, and his school’s work with Habitat for Humanity.  We heard from “Metropolitan Fire” and how the grant would help their organization.

We got to meet Dennis McKeon From Where To Turn, and hear about the work his organization does on Staten Island.

We heard about the Moravian Church garden and their donations of food.

We met E. Randolph Wheagar from 2nd Chance Youth Empowerment Program, and we were inspired by their community work as well.

We met Jennifer Dudley from Staten Island Children’s Museum and learned about their efforts to “spruce up” the museum.

We met a few other incredible folks as well, one whose organization was obtaining deeds to local neglected cemeteries so they could be maintained.  In the absence of pen and paper a few are slipping my mind, but it was a fantastic experience.  It was an intense 45 minutes!

Perhaps the one that touched our hearts most was Mr. Capolongo who spoke of his son Michael with Duchenne Muscular Dystrophy.  If you are not familiar with the genetic disorder, you can get some information here. Duchenne Muscular Dystrophy  It is a genetic disorder affecting about 1 in 3,500 boys.  The body lack dystrophin, and without it muscle cells become damaged and weaken.  It is progressive.  Michael is 11.  They have 2 other healthy children.  They are a family like ours.  Dad is a policeman, mom is a nurse and a breast cancer survivor. Yet, they have managed to create a not for profit, Michael’s Cause and have raised a million dollars to help fund research, and hopefully, ultimately a cure.

In the 30 minutes we sat across a table I felt inspired, and connected.  I respect so much the positive outlook, and the awareness that even in strife, others have it worse.  I respected the acknowledgement that every day is a gift, and life can change your perspective quickly.  These are things we identify with in this house.  Those are principles we live by.

Meghan and I often feel a little more “at home” in the presence of others with rare disease.  While they are all so drastically different, the difficulty, the fear, the unknown, the isolation, they all overlap.  And what also overlaps are your decisions in how to handle them.

I was reminded of my own girl, at the age of nine telling NY1 that. “You have a choice, you can get angry or you can DO something.”  And, “I feel like I was put here to DO something.”  Watch this clip and reminisce with me.

Today we were full of gratitude.  Today we were inspired by others.  Today we were reminded of our own mission.  Today was a continuation of an ongoing goal,  and a reminder that it matters.  It all matters.

We remain

#beatingcowdens

5 Years and “Sag-less” in my 40s

5-years

March 5th. 2012

One of those dates that will stick with me forever.

On March 5th of 2012, I made my way early in the morning to the 10th floor of NYU.  I signed all the papers with my husband by my side.  I shook.  I prayed.  I was terrified.  But, I had strong resolve, and there was no turning back.

Several months prior, my daughter, and then I had been diagnosed with the PTEN mutation that causes Cowden’s Syndrome.  This mutation is responsible for increased tumor growth, both benign and malignant.  It causes polyps, hamartomas, vascular malformations, and a whole bunch of other messy things.  After our diagnoses, we began aggressive and age-appropriate screening.

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Meghan was 8.  I was 38.

They started with her thyroid.  And immediately found issues.

At exactly the same time I was being sent through screening for the highest risk in my age group.  Breast cancer.

I already had a mom- a 15 year survivor of bilateral beast cancer.  (She does not have the PTEN mutation.)  I had already had several surgical breast biopsies through the years, with increasingly foreboding pathology.  But, I could not have been prepared for the surgeon I met in NYU Clinical Cancer Center in January of 2012.  She introduced herself to me, having already torn through my previously received medical record, and said we should set a date.  When I asked for what, she said quite simply, “For your prophylactic bilateral mastectomy.”

A little stunned, I caught my breath and asked why?  “It’s not a matter of IF, but WHEN you’ll get cancer,” she said very definitively.  “We need to get at it first.”

She sent me to her scheduler, who coordinated with the plastic surgeon.  The date they came up with was March 5th.  I asked why I couldn’t wait until the summer, and I was told that she thought that would be a huge mistake.

I called my husband, shaking.  “Do what they say,” he calmly asserted.

So I left that January day with a script for a bilateral breast MRI – just to make sure there was no cancer- and a surgical date.

The MRI was negative.  I am still amazed by that.  Five weeks prior to the surgery there was NO FINDING on the MRI.

I met with the plastic surgeon, and much to her chagrin, I opted for immediate reconstruction, deciding to forgo the preferred method of tissue expanders.  She reminded me that the results would be “imperfect.”  I knew I could not delay my recovery by months.  I had a daughter, a family, and a job to return to.

storm

The surgery was uneventful.

I vomited repeatedly as I left the house that morning.  I cried as I walked into the OR.  My surgeon called me “brave.”  I woke up with a strange feeling of empowerment.

I left the hospital 28 hours later.  There were drains and wrappings, but there were things to do.  I met on the refinance of our mortgage and managed parent teacher conferences with my daughter’s third grade teacher all before the drains were removed.

The day we went to have the drains removed, for whatever reason both Meghan and Felix were there.  The plastic surgeon was the first to mention how lucky we were we caught “it” early.  I was confused.  She said, “The cancer.  It was very early and far away from your chest wall.”

There was silence in the room as we all processed the word “cancer.”

cancer-changes-us

She realized then she was the first to share the news.  Our next stop was the surgeon.  I pored over the pathology report and kept getting stuck.

I went from being a woman “getting ahead of things” with a “prophylactic bilateral mastectomy” to a “cancer survivor” in a moment.

I was told had I pushed the surgery to the summer, I would have been in a “fight for my life.”

I’ll always know I am more fortunate than any of the women who needed, chemotherapy, radiation, and other treatments to keep their cancer at bay.  I have not traveled the road as they did.  I will forever admire them.  But, we are kindred spirits living with the daily knowledge that cancer cells once lived inside of us.  That is a feeling, and knowledge that can not be explained.  You either know it, or you don’t.

every-wound

My implants lasted less than 5 years.  The life expectancy is 15.  This past summer they were replaced.  Scarring was severe on the right side, and the scars needed to be broken up.  A new pair replaced the old.  Nothing flashy.  Quick surgery, quick recovery.  No big deal.  Just a reminder of the reality that will follow me forever.

 

Today I celebrate that reality.

5 years officially Cancer-free.

Five years – and by the grace of God, countless more to go.

Five years- the first of many with sag-less silicone, size small shirts, and the ability to go bra-less without being noticed.

I celebrate my Mom – 20 years a survivor this year – my role model.  My motivation.

I celebrate inside my own quiet- unable to speak as my voice heals.  I celebrate even through miles of survivors guilt.  I celebrate despite my broken heart as so many around me are taken by cancer.  I celebrate because that is what they would want most.

Once you’ve been there.  Lived it.  Watched it.  Seen it.  You get a deeper sense of how precious life is.  And you celebrate what you have each day. It’s not easy.  Life can be messy.  But, we do our best.

I celebrate to honor those who’ve been taken, those who work so hard every day to smile through, and for those whose diagnoses are yet to come.

Every day is a gift. As my friends at #stupidcancer would say – Get Busy Living!

#beatingcowdens

cancer-free-zone

 

 

To Do Lists, Digital Footorints and Random Thoughts

I’m not one for New Year’s Resolutions.  I don’t believe in waiting for a specific day to make changes.  If they are needed, wanted, or warranted – we make them.  Right then.  Otherwise, I’m all about just being your best you- every day.

Parenting a teenager is tough stuff.  Even when your teen is just a good soul, a hard -worker, a good student, and a compassionate human.

persistence4

There are people who would challenge me that we have it easy.  They give me the default model, that raising one child has to be easier than raising 2 or 3 or 4 or 5 or more…  And maybe they are right.  I will never know.  But, they won’t either.  That’s the point.

Raising our children, or living our lives is not meant to be a discussion of “harder” or “easier.”  There are challenges present in every single scenario that comes to mind when I think of EVERY family I know.  In this house we  talk a lot.  My girl and I, we talk about those other lives we know, and their battles.  And we send love and prayers and warm wishes, as they do for us.  It’s not a contest,  it’s real life.

2016 saw the results of two uterine biopsies of my then 12 and 13 year old, with results that left us uneasy, and in a perpetual state of “cautious waiting.”  It also saw me back in surgery, replacing less than 5 year old silicone implants because one had “fallen”  And then, it saw my clumsiness as I spent 6 weeks booted with a broken toe.

2016 saw loss in my family, as we mourn Pop, and are readjusting with Grandma in her new living space.

Yet, we made it.  We came out with a few bumps and bruises, but we made it.

2016 ended with 8th graders we know taking High School entrance and Scholarship Exams.  The next weeks will bring jubilation, laughter, and tears.

Yet, we WILL make it- all of us.

The “To Do” list on the yellow pad to my right is busy.  The fundraiser is about a month away and there is lots to be done.

There is also an MRI, a vascular surgeon, an orthopedist, an endocrinologist, and a gastroenterologist for Meghan, as well as Pre-surgical testing, a tentative surgery date, and a breast surgeon follow-up, an oncologist, and an endocrinologist for me.  All before February 22.  That’s IF no one requires additional testing for anything…

We will fit in the “regular” stuff too, like swimming, and meets, and school projects, and drama… well you know what I mean.

We are working hard to fit Cowden’s Syndrome into our lives, and not to let it RUN our lives.  It’s a subtle difference on paper, but a HUGE one in practice.

And when the thought of running a house that contains TWO people with a rare genetic disorder becomes overwhelming – we try to step back and count our blessings.  Because at the end of all days, regardless of our struggles, it is good for us, and those around us, if we can remain positive.  I’m not saying we’re perfect at it – far from it actually, but it is a goal, and an on-going work in progress.

It came up this week when we were preparing for the fundraiser and talking about social media.  Actually, it has come up a bunch of times since the iPhone became attached to her hand almost 3 years ago…

digital-footprint7

Digital footprint – how are you presented on the internet?  What if someone “googled’ your name?  Now?  5 years from now?  8 years from now before your job interview?  The whole concept of this blog has been discussed in depth.  Meghan, whether she likes it or not, at the age of 13 has an identity that is connected to her rare disease.  Now, don’t misunderstand me for a minute – a close read would CLEARLY indicate, she is NOT her disease, but she will never have the opportunity to deny the diagnosis.  That’s forever, and its important.

What she does with it, well that’s ongoing.  She’s made some pretty dynamic choices to date.  Sometimes she feels a bit like she has something to prove- so she does.

She’s been asking me for “snapchat” lately, and eventually I’ll give in.  But, I’m one of the mean moms who makes her wait.  Instagram is plenty to manage for now.

This week Meghan was nominated as “Inspirational Staten Islander of 2016.”

It prompted me to “google” my daughter.  So when I type in her name connected to our home town, these are the first links to surface…

How Meghan Ortega saved her Mother’s Life

12 Year Old With Rare Genetic Disorder Chosen as Inspirational Islander

Staten Island 9 Year Old and Her Mom are on a Mission….

12 Surgeries in 11 Years- Living with Cowdens Syndrome

Meghan Ortega- NYS Senate

I’ll take that top five any day.

And just for good measure, I switched to an image search.  These 5 were on the first page…

Meghan in her elementary school with one of her idols- Borough President James Oddo

Meghan in her elementary school with one of her idols- Borough President James Oddo

An old one - when Meghan was named "Hero of the Month" by Child Life after an early surgery

An old one – when Meghan was named “Hero of the Month” by Child Life after an early surgery

SI Children's Museum Achievement Luncheon Award

SI Children’s Museum Achievement Luncheon Award

Rare Disease shirts from the PTEN Foundation

Rare Disease shirts from the PTEN Foundation

One of my most proud - NYS Woman of Distinction, nominated by Senator Lanza in May 2016

One of my most proud – NYS Woman of Distinction, nominated by Senator Lanza in May 2016

And, just to be sure, I even tried Youtube.com, only to find a video made in February 2016

Apparently she has listened, carefully.  I don’t know what the future holds for my bright eyed activist.  I know she’ll continue to take heat from a few along the way.  I also know she’ll find the strength to rise above and press on.  Because, that is what we do.

Would she like it is she were named “Inspirational Staten Islander of 2016”?  Sure.  Will it break her spirit one way or another, absolutely not.  Her focus is, “If I win, we could get publicity to help raise money at the fundraiser…”

2017 Event Flyer

                                                                       2017 Event Flyer

If you’ve read this far I’ll tell you what I know about the poll I’ve linked you to below.  The voting takes place like a reality TV show.  I’m not sure how valid it all is, but there is a week of lots of voting.  It ends January 11th at noon.  Apparently you can vote many times before it stops you.  And then you can vote every hour.  So pretty much, if it crosses your mind, and you find Meghan inspirational, save the link and vote whenever it crosses your mind, until your device tells you to stop.

Regardless of the outcome, life will go on.  And we will continue on the same missions we’re on right now.

#BeatingCowdens together

Inspirational Staten Islander Poll – Vote all the way at the bottom

Type A, and Then Some…

Calm down.  Relax.  It’ll get done.  Take a breath.  Why do you get so worked up?

These words could be spoken in several alternate languages for all the good they do for me.  They make no sense.  I mean, on a cognitive level I understand the words.  And even the context.  But, they hold little practical application for my life.

I am Type A.  Yep.  For it’s highs and lows, positives and negatives, I am a Type A personality.  Although like everything in life, the transition between Type A and Type B is a spectrum, I’m still honest with myself.

16 Signs You’re a Little Type A

Go with the flow.

I have a dear friend who has promised to make a t-shirt that says,”I am Flo,” to guide me.  She has 4 boys.  (She used to be full on Type A.  Now she shoves that in a drawer for most of the year, but the chaos sometimes still makes her cringe.)

high-strung

I am high-strung.  I am focused.  I am task oriented.  I am all about getting it done and getting it done well.  I get pissed when other people fall behind on their jobs.  I want order, structure, and routine.  I make lists on top of my lists, while putting alerts in my phone to avoid missing anything.  I have a hard time forgiving myself when I do.

typeapersonality

I am a work in progress.

But to some extent, regardless of your personality type, I guess that’s true of all of us.

September is chaos.  True, unequivocable chaos.  Here, in this house.  Here, in my mind.  September is the toughest month of the year.

And apparently I’m not alone, because this article really cracked me up.  September Is The Worst

If I could jump from August to October, it would be smoother.  And I’m not a big fan of wishing my life away.  But, transitions are especially tough on the Type A among us.

37309-hello-october

And, when you’re a teacher – well.  That’s just a whole other story.  But, for the sake of brevity simply organizing class lists for 25 classes and 500+ students while they are going through new admits, discharges, and interclass transfers is a feat not to be taken lightly.  With the knowledge that 9/11 took place just a few days into the school year, I am always filled with a super sense of urgency to try to know who I have, and what their needs are as quickly as I can.  Figuring out who has allergies, and who has an IEP is another struggle.  Establishing rituals and routines for the classroom of a Type A teacher in one period a week is a bit taxing.  Not as tough for the bigger kids, but those tiny kindergarten faces are still in shock.  There’s no way they even remember my name, let alone where they should sit in my room.  Substitute plans must be prepared, because emergencies don’t have the courtesy of always waiting till October.  Copies of the schedule, printed, Emailed, and hung everywhere.  Supplies, traffic patterns, expectations, all need establishing and reminding.  That’s after the room is set up, and the bulletin boards are complete, and evening back to school night is squeezed into the agenda.

The agenda that is busting at the seams.  Because, I know all you moms of multiple children may laugh at me, and whisper about how easy I have it, but that’s ok.  Setting up the school and after school schedule for the child(ren) is a full-time job on its own.  August looks so nice.  The calendar lulls you into a false sense of security, as one by one the activities start-up again.  And then all of a sudden you are trying to figure out when you will shower, or fill up the car with gas, or eat, or grocery shop.  Never mind hair cuts!  There’s the one time deals, like back to school night, and “returning parents swim meeting,”  Every minute of every day seems to hold something.  I know I have only one kid, but that doesn’t mean she can take herself to swim practice.  Or pick herself up.  Or that most of the time I can even leave her there, as lingering fears about her health are always present.  And on the days she stays late at school for Drama, that’s a little easier, except when it crashes into a meeting at school.  And there’s morning study, set up for the intense schedule for the 8th graders, as well as Friday night Youth Group for stress release.  I think there’s a few minutes on Wednesday between 3 and 4 for sunshine.  Oh, wait… groceries…

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And to the left of me sits the Open House Schedule for High School.  Still shaking my head as to how THAT happened, I am trying to figure out their days of the week.  Because, I think we can make the Staten Island Borough Fair AFTER the swim meet that morning in October.  There is the TACHS test, and the Specialized High School Test.  Although I’m not really sure when there would be time to prepare.  Unless, maybe there’s and app for that?

I haven’t even mentioned our health.  Isn’t that just funny?  It hasn’t rested one bit.  And the most ironic thing, is people don’t realize you shouldn’t mess with a chronically ill Type A.  Chances are good they like to excel at EVERYTHING.  And in my case, I am willing to throw it at them.  Hard.

Some time towards the end of August I had surgery to replace my implants.  Far earlier than the 10-15 year life expectancy they had been given, one had moved, and it was time.  That night as I lay recovering I picked up an Email from Meghan’s endocrinologist that we should raise her thyroid meds.  Her levels were off again.  Now raising the meds in and of itself every once in a while is not a huge deal I guess, but Meghan struggles with synthetic ANYTHING, and the fact that we were now 2.5 years post op from her thyroidectomy and she has had more dose changes than I have had in over 20 years can be unsettling.  More unsettling was when I read to the bottom of the letter that he would be on vacation for over 2 weeks.  So, here I was left to make a dose adjustment without clearing my list of “Type A mother of a chronically ill kid” questions, which, in case you wondered, are far more intense than the typical questions I ask.  I scraped together the new dose from the closet, because I think we have Synthroid in EVERY dose known to man, and started her on it the next morning.  My local pharmacy informed me that the insurance wouldn’t cover the new script even though it was a dose adjustment and we would have to mail order it.  But mail order takes 2 weeks.  And there was no telling whether she’d be on the dose for more than 6 weeks.  But, whatever.  I set my sights on getting a copy of the lab report to learn the magic thyroid numbers.

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And then the real battle ensued.  I tried to get it from one doctor.  They couldn’t release it because they weren’t the “ordering” doctor, even though she had added labs to the order.  I called the office of the endocrinologist.  Twice that Monday.  And again on Tuesday.  I got a call back late Tuesday while I was on the phone complaining that I couldn’t see her labs through the “MyChart” system set up at the facility.  The ‘ office said they’d send them.  The MyChart people said they’d look into it.  I waited.

Exactly a week.  There were no labs in my mailbox.  I called the endocrinology office again.  I got someone who promised to send them and did.  I called the MyChart people again.  No answers, except that some one told me it was hospital policy not to allow parents access to records of their children ages 12-17.

REALLY???????????????????

Listen, while I may not like it, or even agree with it, I can almost understand that there are SOME situations where teens have the right to keep their records.  But, this, this is THYROID blood work.  She doesn’t want it.  TRUST ME.  She just wants me to give her what she needs to feel well.  That’s it.

I processed all I could about this at the same time that I got ANOTHER bill from this hospital.  The date of service looked familiar.  I keep copious records.  (Type A… :-)) And I was able to see that a bill for the DOCTOR, the PHYSICIAN Group, and the HOSPITAL FACILITY all billed, and were ALL paid to the tune of over $1000 for a 15 minute visit.  And NOW, they were asking me for 2 additional Co-Pays.  Notwithstanding the fact that we have 2 insurances, so our secondary picks up the co-pay at many of our visits.  I called the primary carrier.  They reversed the charges, but told me the billing practice was not illegal.  Ok, then its immoral.  And it preys on people who are sick, or who have sick kids.  The insurance company also told me it was ON ME to call them when this happens.  ONLY when I call them will they reverse the charges because as per my plan I am to pay one co-pay per visit.

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Good, cause I needed something else to do.

By the first Friday in September I had had it.  I found the CEO and Head of Patient Relations.  I fired off a 14 page Email, 7 page letter, and 7 attachments about everything wrong at their facility.

I have since received 4 copies of the blood work by mail, and 2 phone calls asking it I needed it.  One mail even came second day express.  Of course it was addressed to my minor child, whose signature means nothing, and who is not legal to vote, or to drive, but who apparently in some alternate universe should be making health care decisions.

I received a letter from Patient Relations that they were reviewing my concerns.  I’m not holding my breath.

That same Friday I tripped and fell and did some number on the pinkie toe of my right foot.  A clear fracture, although there is some debate as to whether it is displaced, and it will warrant another opinion.  The 3 hours I spent visiting the last podiatrist was a waste of my time.  So, I am in a post op shoe for some infinite amount of time going forward.  Because there is little chance in heck the right foot is getting into a sneaker any time soon.  Good thing it’s the perfect month to “take it easy on the foot.”  (Insert sarcastic grin here.)

Last Saturday the vocal therapist told me that I have one irregular shaped nodule on my left vocal fold.  It still gets to be called “benign appearing.”  I was also told I have “significant vocal fold atrophy secondary to premature aging.”  Well, that sucks.  Because I thought atrophy took place when you didn’t use something.  And oh, I use my voice.  And the premature aging, well, that’s likely thanks to the 2012 hysterectomy that was a necessary preventative move.  It all comes back to Cowden’s somehow.

Over the weekend I noticed that the knots from the implant exchange were getting irritated.  This doctor like all the others had been warned, I don’t dissolve stitches.  But, as wonderful as he was, he also needed to be shown.  I clipped one of the knots myself and there was immediate relief.  Then I second guessed myself.  By Monday the site I hadn’t touched was red and warm, while the other was healed.  I took a photo and sent it to the PA.  Come in tomorrow she said.  So Tuesday afternoon, my surgical shoe and I trekked into Manhattan.  She pulled the stitches, read a low-grade fever, and marked the redness.  She scripted me with 5 days of antibiotics but told me to wait 12 hours.  Wednesday morning I sent her a photo.  “Looks better, right?”  I said.  “Start the antibiotics,” was the reply.  So, I did.

Friday, Meghan made it to morning swim practice.  5:15-6:30AM.  I dropped her off, and headed home to shower.  I met her with breakfast.  We stopped off to drop her bag, and were at her school by 7:22.  I picked her up at 2:20 and she made afternoon practice.  I was tired.  She made it to youth group too.  I was in bed by 10.

Friday I spoke to the endocrinologist – finally.  I really do like him, but I think we’ve established now that I can’t wait 4 weeks for communication.  I don’t think it will happen again.  We talked it through.  Wednesday the 28th we’ll head to the hospital lab to repeat.  We are going there because then there is no chance for anyone to blame a variation on a different lab.  But, that’s ok cause there is that free hour on Wednesday…  He will call me on the 30th with the results.  I believe him.

I also believe that when I take his call on the 30th I will have a tall glass of wine celebrating the END of September.

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This morning Meghan woke up with a sore throat.  She had to skip practice.  That’s always a tough call for her, but the right one.  She’s beating Cowdens like a champ, but part of winning is knowing when to slow it down.

Slow it down.

Hmmm.

I am so wrapped up in the have-tos, and the just getting by, that so much life is just on hold.  We have to gather enough spoons to save for something fun.  Anything.  But there are no spares.  Especially not in September.  (If that last paragraph confuses you – you can Google The Spoon Theory)

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Sometimes, when I have a minute, I  think about calling some of the friends I miss a lot.  But, I don’t.  They have crazy wild lives of their own.  My fears and anxieties and worries exist, and so do theirs.  But for some reason right now, they largely exist separately.  I miss them.  And I am forever grateful for Social Media and the few minutes I can take, at swim practice or the doctor to catch up, at least on the surface.

I am super-blessed with a husband who not only tolerates my Type A, but works with me.  He cleans, and cooks, and remembers to make me laugh.  A lot.  Often at myself.

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I am three years deep into nutritional cleansing that I have no doubt is keeping me fueled for this crazy life.  One day soon I intend to find a way to shout from the rooftops and share this secret arsenal of nutritious fuel with the world.  Because without it, I’m not sure exactly where this Type A, broken toe, infected boob, woman, who needs a tour guide microphone to teach her classes would be hiding.

Instead of hiding, we remain,

#beatingcowdens

forever!

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Yep, it’s broken. But, not me… Nope, not me!

Friday, I tripped over something in my hallway.  I wasn’t looking.  I ended up against the wall, screaming all sorts of words that I am sure were inappropriate for my daughter to hear.  But, for about 60 seconds I let … Continue reading

Set Up Surgery on Safari – check

Last Tuesday, on Meghan’s 13th birthday, we woke early and headed to the airport for what has become an annual family vacation.  Disney World is a “happy place” for all of us.  Despite crowds, and heat, we seem to be able to locate so much magic there.  Plus, it’s not here.

I like it here.  In my house, with my family.  But being “here” in a broader sense means doctors and tests, and appointments and procedures.  And traffic, and waiting.  And bills, and phone calls, and all sorts of obligations that often keep me tied to my desk chair.

In Disney someone produces allergy safe meals for us.  In Disney there is no driving.  In Disney there are fireworks and parades and shows.  While we are in Disney Mom watches the dogs and the house.

Those 8 days designed as a respite.  A safety zone.  A doctor free area.  And we look forward to it every year.

This year was even more special because Meghan brought a friend.  She got to bring a kind, compassionate, witty young lady who had been by her side through some ups and downs the past year.  There is not a long list of people who Meghan trusts enough to take into confidence, and I can’t say that I blame her.  But, this young lady has similar loyalty standards, and held her composure as Meghan threw some tough stuff at her.  Meghan is forced to think about things and process things that are not even remotely acceptable to have to deal with at her age.  Most peers are overwhelmed.  Many shy away.  This young lady did not NEED Meghan as a friend, they CHOSE to be friends.  As different as they are, they compliment each other nicely.  So we set off on our adventure this year as a party of 4.  The Ortegas plus one!

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Once we found our groove, (adding a wheelchair takes finding a balance) we were off and running.  Great food, lots of laughs, and the highs and lows you’d expect from two spunky teenagers.

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I was distracted Friday when my cell phone rang, while we were on the Safari at Animal Kingdom.  I should have seen the NY number and known what was coming.  But, I answered quickly.

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It was my plastic surgeon’s office.  The one who had told me they could fix my implant some time in the spring… well, they were offering me a spot on August 19th.

If you don’t have the back story on this I’ll give you the quick version.  After a double mastectomy in March of 2012, I opted for immediate reconstruction.  I was very pleased.  Then in November of 2012 I was in quite a car accident.  I took a good hit to my totaled Hyundai.  The implants were intact, but likely never quite the same.  By the summer of 2015 I had been experiencing some pain and discomfort on the right.  I went back to my plastic surgeon in November of 2015.  She told me the right implant had fallen a bit, and I should have (non-emergency) surgery to pull it back up.  Except, she was no longer accepting my health insurance.  The year that was had Meghan in the OR I believe 5 times.  I struggled to get the courage to call the new plastic surgeon.  I was annoyed to have to do all this again so soon.  The initial estimate on the implants was 15 years.  This was under 5.  I finally got an appointment with the new plastic surgeon a full year later, in July of 2016.  He concurred that a surgical procedure to “tighten things up” was a good idea, and that I could schedule at my convenience.  So, I tried to get it scheduled for the summer.  Then I tried for October when we have a few days off.  Then I tried for December… and before I knew it I was looking at spring break, almost another year of what had transformed from pain, to just an odd sensation, all the time.

I listened as I was told I could have the date one week away.  I looked around at the animals on the African Safari.  I tried to keep my conversation low enough to make sure the girls, and no one else on the vehicle was following along.  I promised to return the call in an hour.

I hung up and managed to share the story with my husband.  Then I called my Mom.  Then I called the plastic surgeon back.  “Let’s do it.”

So the following Monday was spent ducking away to make phone calls to set up pre-operative appointments.  Because the plane was due to land at midnight Tuesday.  I needed blood drawn, and a physical Wednesday in order to hold the spot.

Tuesday we left Disney.  The step count on my FitBit was over 142,000  I had covered over 62 foot miles.  I was tired, but happy.

We did have a great week, and while I was bothered on some level that the surgical planning creeped in, I am skilled at managing many things from my cell phone.  And, the thought of getting all that straightened out months ahead of schedule was exciting.

Tuesday it rained.  In NY and in Florida.  There was lightning.  There were delays.  Lots of them.  Our plane landed well after 1 am.  I hit my bed hard at 3 and was on the bus to NYC for the lab work by 9.  After battling NYC traffic there and back, I went for the physical.  Passed, and papers faxed to the plastic surgeon by 4:00.  Success.

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Life moves quickly.  We have to keep up.

The call came Thursday to be at the hospital at 6 AM Friday.  While I am not a morning person, only the surgically experienced would realize that is like hitting the jackpot.  It means you’ve got first case.  And that is a giant win.

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There was little time to share the plan with anyone.

Yesterday morning I had bilateral implant repair between 7:30 and 10 AM.  I slept till 1, had some ginger ale and crackers and was home by 2:45.

Last night I laid in my bed catching up on Email and I caught one from Meghan’s endocrinologist.  The thyroid numbers have gone a bit off again.  He wants to play around before repeating labs in 6 weeks.

Medication readjusted.  Again.  Illogical.  Like so many other things.

Apparently #beatingcowdens involves scheduling surgery on an African Safari and readjusting medications hours post-operatively.

We’ve got this.

Thank goodness for our time in the “Happiest Place on Earth.”

 

 

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.

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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.

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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.

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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.

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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.

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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.

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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…

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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.

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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