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!

The Struggle (for Silence) is Real!

Irony is spending 20 years wondering why your students sometimes struggle to be quiet, and suddenly, in one week, realizing how insanely difficult it is to be silent, AND, that it’s likely your need to talk constantly is part of the reason WHY you went into teaching in the first place!

Last Friday, March 3rd, this ugly thing was taken off my vocal cords.

Before – 3/3/17

And they, like so many other parts of my body, now boast scars.

After 3/3/17

So, I set up for a few weeks out of work, and a week of required silence.  I never actually thought I was ready, which is a good thing.   Because I wasn’t.

I do poorly on twitter,  Rarely could I get out what I need in 140 characters or less.  Absolute silence involved my cell phone in hand at all times.  A few times the thing almost learned to fly, as the fingers, and auto-correct could not keep up with my brain.  But, life lesson number, oh, I don’t know, 4 or 5, teaches us that life goes on around us.  Ready or not.  Even when you have to watch and not participate.

There have been many times since March 3rd I’ve been grateful that thought bubbles do not appear above my head.

On the 9th I headed to the city for my follow-up.  After learning the pathology was benign, and read only “polyp,” I was relieved.  The doctor was pleased with the initial healing and told me I could begin to use my voice.  Slowly.  He said 5 minutes an hour.  That sounded high, based on what the voice therapist had told me in the fall, but I was grateful.  I used the first 5 minutes up asking him questions.

I wanted to know whether this was connected to Cowden’s Syndrome.  I wanted to know if it was likely to recur, if I needed vocal therapy, and when my follow-up would be.

Apparently, kind as he is, he could communicate on Twitter much more efficiently than I.

Cowden’s Syndrome?  I don’t know.  There’s not a lot of literature.  This type of polyp is usually a traumatic event, something you’d remember.  But, you don’t.  And it grew really fast.  I’m not sure.

Recurrence? Maybe.  Depends how it came to be.  Be careful with your voice.

Vocal Therapy?  Suggested.  Start on the 13th.  (Whew… THAT I now KNEW I needed.)

Follow up – April 13th, a few days before I am scheduled to teach my first class post-operatively.

He was an outstanding surgeon.  Matter-of-fact.  Thorough.  Efficient.  But, I’ve known enough surgeons now to know, they don’t play with why.  They just fix it and move on.  He will “doctor” me, to the point that he will follow-up, and hopefully watch NOTHING ever grow there again.  But, in reality this is now just another vulnerable spot on this PTEN mutated body.  Because, I would stake certainty that it’s connected.  There just aren’t that many coincidences in life.

So I left Thursday feeling good.  I got 5 minutes an hour!  I tried out my voice in the car.  I tried it out at home.  And then, I picked up my daughter at school, and I was so excited to talk to her, I easily let the conversation surpass 15 minutes.  oops.

Later when I spoke to my husband I was well past 10 before I stopped.

This 5 minutes and hour thing was not for the faint of heart!

Sometime Friday I decided that stopping at 5 minutes was, nearly impossible for me to regulate.  It was quite possible I could lose my mind.

And then I texted the voice therapist to set up my appointments for this week.  And I mentioned the 5 minutes.  And that I randomly out of nowhere had vomited for 20 minutes that morning.  And her words were crystal clear. “DO NOT SPEAK AGAIN UNTIL I SEE YOU”

Sucker Punch

I went from a poorly managed 5 minutes back to a feeble attempt at silence.

I failed.

I spent 2 full days at a swim meet at with my girl.  7 hours each day away from home.  I got to rest my voice, except when I felt compelled to tell her how proud I was.  Or to wish her luck.  Or to just chat… a little.

Some people really love chocolate.  Me, I don’t mind chocolate, but I LOVE to talk.

We sat in therapy today and I got exercises for volume and pitch… all ironic because I struggle to tell the difference, but I’m an overachiever, so I try to do well.  I sound like a complete loser, but I imagine it’s the same as me attempting something that requires coordination, like kick-boxing, or yoga. My poor vocal cords may not stand a chance.

6 exercises, 5 times each.  Repeat 4x a day.  And during those 4 hours DON’T SPEAK at all.

The revised schedule she gave me had 3 minutes an hour till Friday.  Then, we’ll entertain 5 minutes again.

Tonight I pulled back into my office.  To be silent I must be alone.  I put some “breathe” into my diffuser, and tried to get my thoughts together.

Then I realized they ARE together.  I just have no place to put them.

Tomorrow the house will be full for the snow day.  Normally this would make me very happy.  Tomorrow it is likely to make me a hermit.

Grateful the voice works.  Grateful I tend to heal well….  But, some days

#beatingcowdens

is a real trip!

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

Pathology…

About an hour ago I got off the phone with Meghan’s gynecologist.  It seems we dodged another bullet.

Mostly.

Once again we got to spend about 45 seconds in a deep breath as we were told there was no evidence of malignancy in the uterine biopsy from last Friday.

BUT…

There is always a “BUT…”  I’ve come to expect it now.  After she spoke, she paused.

I asked her why she sounded happy and hesitant at the same time.

“Well I just got off the phone with the pathologist…”  and her voice trailed off.

So much was what she expected when she spoke to us Friday.  But, it was still bothering her that there are polyps.  And more than one.

“It just shouldn’t be…”

Sigh.

We’ve heard this so many times before.  “It just shouldn’t be…”  But, in fact it is.

So the polyps were benign.  The tissue sampling was benign.  This is a good thing.  A very good thing.

Digitally generated My brain has too many tabs open

But, this whole situation.  The whole scenario that causes all sorts of conversations a 12 or 13, or even a 19 or 20 year old for that matter, should NEVER have to have, is just not ok.

There are thoughts, decisions, trade-offs, conversations, risks and benefits that make deciding on a high school seem trivial.  Strange that THAT will be the toughest thing most girls her age have to do this year.

Soul_Darkness_Light_Stars_Night

And as I look at her, it kills me inside the things she has to go through, and the thoughts she needs to think.  All I can do is thank GOD, that He trusted me with this beautiful, dynamic, witty, young lady.  And I promise to take good care of her until the rest of the world figures her out.

 (and really, for FOREVER. as we remain #BEATINGCOWDENS together!)

Counting… Our 400th Post!

“Count your many blessings, name them one by one…”  Grandma used to sing years ago when we would complain about nonsense.  She was a little tough sometimes my Grandma, and maybe that’s where I got it from.  But, many times she was right, whether we listened or not.  (Maybe that’s where I got that from too? ;-))

Count your Blessings 1-03

I like numbers.  They are logical.  They are what they are.  In a world that often makes no sense at all, I find order in numbers.

Except sometimes I’m faced with the question of what to do when numbers become overwhelming in and of themselves.

This marks the 400th post on this blog.  While it’s by no means a masterpiece, when I sometimes poke through old posts I remember so much of where we’ve been.  It’s a definite roadmap of our journey, and Meghan and I take great pleasure when people from around the world reach out to us and cite the blog as a source of comfort and strength.

Cowden’s Syndrome is rare enough that it can be a lonely diagnosis.  Being able to reach people the world over has been a victory for us, and them.

With over 170,000 hits on various posts I know we are getting the word out.  Slowly.

a-170000

I might have wanted to celebrate this post.  I might have wanted to make it really special.  But, I’m counting something else today.

Today was the 17th time I’ve gotten off the phone with the nurse, giving me pre-operative directions for my daughter.  Today, I listened as I always do, reciting the directions in my mind before she spoke.  Really my only interest was the time.  The rest is routine.  I want to stop counting.  I want to just go with it.  I can’t give you an exact count on mine anymore – because once you’re a mom, well, you just focus more on what’s important.  And you become less important.  And that is a gift, denied to many, cherished and appreciated.

seventeen

Somehow though,  if I stop counting for her, it makes her struggle feel less valid.  The numbers give her strength.  A badge of courage.  Something concrete in this world of abstract.

My post last night was about “Patience”

https://beatingcowdens.com/2016/07/20/the-waiting-place-2/

And as I poked around the blog this morning I was taken back years, through so many similar posts.

https://beatingcowdens.com/2013/01/10/blessings-and-patience/

https://beatingcowdens.com/2012/07/02/the-waiting-place/

https://beatingcowdens.com/2015/05/06/hurry-up-and-waiting-rooms/

https://beatingcowdens.com/2015/08/28/losing-count/

Their similarities are uncanny.  I guess the story doesn’t change much.  Hurry up, wait, surgery, wait, recovery, wait, follow up, wait…

So I’ll leave this 400th post as unremarkable.  Nothing has changed.  Nothing will change.  And that’s the precise reason we keep counting, and keep telling our story.

Tomorrow, surgery number 17.  9:15 arrival.  As usual, prayers always appreciated.

#beatingcowdens 400th post!

400

The Waiting Place…

A quick Google search brings the definition below when the word “patience” is entered.
pa·tience
ˈpāSHəns/
noun
 
1. the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
I’ve been thinking a lot about patience these last few weeks.  It’s something we work on from a very young age, yet I’m not quite sure it can ever be attained in its purest form.  At least not by me.  Not if I’m honest.
patience 5
And I tend to be honest right here.  Which some might think is an odd place to make that choice, but that’s for another conversation.
We work on patience when we are young.  Waiting for play time.  Waiting for school to end.  Waiting for a party.  Waiting to get there.  Waiting for the game to finish. (Waiting at ‘the waiting place’ like Dr. Seuss in “Oh, the Places You’ll Go”)
We learn that patience will help us get things faster.  If we are patient our parents are more likely to bend.  If we do what we’re told and wait, things are more likely to go our way.  That ice cream cone has a better chance of landing in our hand if we’ve exercised patience than if we’ve badgered.
When we get a little older there are less overt rewards for patience, yet it’s still a necessary virtue to master.  Those without patience are deemed immature.  If we are overly demanding it endears us to no one.
patience 2
I know this.  I know all of this.  And generally I am a pretty patient person.  But, I must tell you I have thought long and hard about the amount of patience required to navigate Cowden’s Syndrome and its ramifications, and it seems to be an inordinate amount.
I get it.  I’ll say it a thousand times to anyone who will listen.  Of all the “rare disease” cards to draw, this is by far among the better ones.  I know of the suffering of so many who are diagnosed with torturous terminal diseases.  I know of so many who would trade places with us in an instant.
If the PTEN mutation causing Cowden Syndrome is found early, a lifetime of vigilance can often ensure longevity.
It’s just that with that vigilance, you need to much darn patience.  So with my gratitude, I sometimes battle frustration.  Which is ok.  Because I am human.
patience1-1
In the last 21 days I’ve been to Manhattan 4 times for doctor’s appointments, and another 2 to Long Island.  The average roundtrip for these appointments is about 5 hours.  5 hours to travel in insane traffic regardless of the hour.  To Manhattan the distance is only 13 miles and I can not tell you how many times 2 hours hasn’t been enough time to be on time.
But, I should never worry, because they are rarely, if ever on time.  And while I understand the myriad of reasons doctors run late, still the patience sometimes runs thin.  Especially when we are anticipating another traffic filled journey home.
The patience wanes when I call offices and 2 days lapse without returned calls.  I struggle when I have to spend hours explaining what test I need insurance authorization for, only to have the person speaking to me become hysterical with laughter, presumably because they are being told a joke.  I’m not against laughter.  I actually like it.  But, when I have to now cancel the test ordered by the doctor I never wanted to see in the first place, sometimes I just can’t find it funny.
patience 4
When I call for an appointment and I’m given a 3 month wait time.  And an appointment smack in the middle of the work day.  I lose patience.  I don’t expect special treatment.  And its a good thing I don’t.  But its sometimes hard to stay patient when you’re juggling over a dozen specialists (each) and a full-time job, and academic honors.
So in the summer I try to be even more patient.  But by default I have to get a lot of things done in the summer.  We are actively trying to shove in some fun, in between a boatload of appointments.  I try to squeeze in time in pockets of my day to regroup and relax.  I try not to cringe when my Facebook news feed is full of play dates and day trips.  Why shouldn’t it be?  I don’t WANT anyone else to have to sort through this mess.
Friday is Meghan’s second uterine biopsy.  PTEN mutations tend to cause most of their cancers, although not exclusively, in the thyroid, breast and uterus.  The fact that she hasn’t hit her 13th birthday yet, and this will be her 17th round of operating room, general anesthesia procedures is taxing.  But, we will be patient.  We will be patient tomorrow when we wait for the time of Friday’s procedure.  And we will be patient on Friday as there are often delays.  We know.

time concept, selective focus point, special toned photo f/x

We will be patient over the weekend as she adjusts to the discomfort and pain from the procedure.
We will be patient while we wait.  And wait.  For the critical pathology report.
We will be patient while she heals enough to return to the pool.  Her happy place.
Patiently we will continue to navigate the road of vigilance, peppered with mines that need to be avoided at all costs.
We will pretend, each time we meet a new doctor, that they are the most important.  We will not even try to explain the full complexity of the scheduling of life.  They have their own problems.  They don’t need to hear about ours.
When we each face our own lives we know the challenges presented to us.  I don’t want any of yours.  At least I understand the task at hand here.
I have gratitude that I am given the opportunity to allow my vigilance to matter.  I am patient.  Mostly.
pa·tience
ˈpāSHəns/
noun
1. the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
Usually I take a deep breath.  A bunch of times.  I’ve learned patience gets you farther.
So if some days are harder than others, I ask you to have patience.

#beatingcowdens can be exhausting.

persistence

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…

chronic illness3

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.

chronic illness4

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.

chronic illness5

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.

Local Newspaper Coverage

This is already all over for my local friends, but for anyone else who is interested, this article was written for our local newspaper. It will publish in print Monday, but is in the online paper today. Click the link below.

http://blog.silive.com/gracelyns_chronicles/2016/01/post_23.html#incart_river_mobile_home

 

JFRGflyer7

Relax, Nothing is Under (My) Control

Today I  dropped my daughter’s iPad.  Down a flight of stairs.  With no case.  I’ve never seen quite so many pieces on a screen.  But, it still turns on.  And somehow we all managed to remain calm.  My husband set the appointment at Apple for Weds. night.  Yes, we have “Apple Protect.”  Yes, I know there may be a deductible.  And, while I called myself several names, I was most impressed that all three of us remained very calm.

Maybe we are learning.

Relax

NOTHING is under control really, except how you handle the things that are out of control.

Yesterday I had the dog to the vet.  In a little under a year since we rescued her, she has ballooned from 42 pounds to 65.  I guess she feels content in my house.  We must be doing something right.  There was this rash on her belly.  And $300 later, with a shot of antibiotics, some antihistamines, and this cone on her head – it’ll be ok.

April cone

Except in the middle of the night.  Then she needs her Mom to love her cause she can’t get comfortable.  But, hey, really sleep is overrated.

On Thursday we went to see the ENT.  He checks Meghan periodically since the hospitalization 18  months ago to gauge how her reflux is affecting her throat.  It was a bit redder than usual this time.  So, we juggled a few medicines and left with directions to find a GI.  Easier said than done.  Our last one was fantastic, but she took a break from practicing, and our local options are less than fantastic.  So we will seek, and hopefully find…

On Wednesday we had the 2 week follow-up from the biopsy.  We left with a script for progesterone which is apparently our only option.  It’s necessary to slow the growth of those precancerous cells, and hopefully get them to go away.  Verified with the head PTEN researcher in Cleveland, through my local geneticist.  I hate hormones.   Hopefully she tolerates it.  Hopefully the cells behave themselves.  Three month follow-up, then we schedule the next biopsy.  She needs another biopsy so we can have a “clean” one.  That’ll be in June.  Something to look forward to.

On Wednesday after the doctor, Meghan and I took the train from downtown to Times Square to see Daddy at work.  This is truly one of the highlights of her year and there was no way we were missing it!

NYE ball 2016

Favorite Family Picture! Wearing our "NEVER GIVE UP!" thegsf.org

Favorite Family Picture!
Wearing our “NEVER GIVE UP!” thegsf.org

On Tuesday we stayed home.  She missed play practice.  She was recovering.

Monday had started out full of energy – with a huge nail in my new tire.  Thankfully the car has warning lights to tell me when the pressure is low, and thankfully I got up early, because soon after I got home from getting it fixed, she woke up.  In pain.  We ended up spending Monday in the Emergency room at NYU.  All told about 8 hours, a CT scan, a chest X-ray and blood tests, they found an elevated WBC, and free-floating abdominal fluid.  The doctor said it’s likely a cyst burst.  She was vomiting so badly that morning I never knew WHAT had hit her.  Just something hard.  The fluid, in my very sensitive to her body, girl, was likely causing the severe pain – just being there.

 

One LAST IV for 2015

One LAST IV for 2015!

Maybe it was triggered by Sunday’s Swim Practice at the Long Course (50M) pool on Long Island.  Maybe not.  We’ll never know.

Christmas seems like only a blur.  Mom had it this year, a kind respite for me.  Some time spent with the family.  Some time to just be together.  It was perfect.  And I am so grateful.

 

My Family 2015

My Family 2015

My Sisters 2015

My Sisters 2015

Meghan with her Great-Grandparents 2015

Meghan with her Great-Grandparents 2015

The week has been wild, and I guess that’s why I’ve been quiet.  But, I am proud to say we have laughed despite the chaos.  I can’t think of a day this week I haven’t laughed so hard I cried.

NOTHING is under control.  At least not under MY control.  And I am going to TRY really hard to be more OK with that.

The schedule for 2016 will not lighten up even a bit.  I have an ultrasound Saturday, Meghan has an MRI on the 14th and the knee doctor on the 25th.  It will not slow down.  I must stay organized, and healthy, and focused.  I must continue to eat well and exercise.

Most importantly I must laugh.  Often.  With my family.  With my friends.  The adventures will continue.  But

IMG_5580

Happy New Year to all!

NYE ball 2016c

 

It’s Complicated…

complicated

I just ended a 30 minute conversation with Meghan’s adolescent gynecologist.  The fact that she spends 30 minutes on the phone with me speaks to a rare spark of passion for her field, and a genuine desire to help.  These are things we clutch because they are uncommon, and, when they come at all, they are fleeting.

The long and the short of the pathology, which arrived earlier than planned, was that there was no malignant finding.  Yes, you read that right.  No malignant finding. (Insert Happy Dance here…)

happy dance

And the gratitude for the prayers and positive energy was lifted up.  We truly are always aware of the potential alternatives, regardless of our situation.

But, as is always the case with Meghan, I encourage you to keep reading.  Nothing is ever really simple.  And, as the years go by it seems to get progressively more complicated.

While in fact there was no malignant finding, there was not a purely benign pathology either.  She had “the best type of hyperplasia you’d want to find.”

Except when pressed, the gynecologist admitted that there is no type of hyperplasia that you’d ever want to find in a 12-year-old, and that there should be nothing but normal cells there.

Hmmm.  Hyperplasia. Medicine.net says…. “Hyperplasia: An increase in the number of normal cells in a tissue or an organ. Hyperplasia can represent a precancerous condition.”  And various other sites say the same.  The doctor agreed.  The pathology finding was not “normal,” and therefore it must be treated.

See, hyperplasia, specifically endometrial hyperplasia might be detected in women 3-4 times her age.  It might even be expected in women 5 or 6 times her age.  But, her age is 12.  And none of this is ok.

think_outside_the_box

I pushed her about thinking outside the box, and she reminded me that the entire biopsy WAS thinking outside the box.  Any other teen would have been treated for months or more on hormones.  That could have had epic consequences.

In the short-haul, she gets to heal from an invasive procedure.  In the next week more hormones will be introduced to her body in an attempt to keep the hyperplasia at bay, and most importantly to keep it from progressing.  But, hormones, although commonly used to regulate bleeding, require special care in the case of a young lady with no thyroid, a difficult time balancing the endocrine hormones, an extremely elevated risk of uterine and breast cancer, thanks to the PTEN mutation, AND TWO first degree relatives, with estrogen fed breast cancer.

For now, she keeps her uterus.  And we hold our breath.  We hope that over the next few months things will start to calm down.  And some time in the next 6 months the invasive biopsy will be repeated over again to make sure the hyperplasia is gone or behaving itself.

repetition

To Meghan this mimics the process that took place at the beginning of the end of thyroid removal.  We had about 3 years of progressive biopsies before they decided to pull the plug and take it out.  She knows, and agrees, that we will all fight longer and harder for her uterus.  For so many reasons.  But the similarities can’t be overlooked.  Nor can the distressing notion that another body part is misbehaving.

When we were diagnosed in 2011 we were told there would be screenings and monitoring.  We even figured on a few doctors every 6 months.  At one point we dreamed of getting them all into a week in August and a week in February and living a somewhat normal life the rest of the year.

Instead, in Meghan’s life alone there have been 5 surgical procedures in the last 13 months.  Digest that for a minute, because it’s hard to keep track of.

Currently we are monitoring her thyroid levels through blood every 6-8 weeks, visits twice a year, and annual ultrasound to monitor potential regrowth.

We are monitoring her knee where the AVM resides, through twice a year visits to the interventional radiologist and twice a year visits to the orthopedist.  There is an annual MRI.  And two of those procedures in the last 13 months have been for the knee.  Add in surgical follow-up visits, and Physical Therapy.

The dermatologist needs to see her twice a year.  Not because anything has been found on her, but because in addition to me passing the PTEN gene to her, apparently her father and I BOTH have Dysplastic Nevus, a “precancerous” condition where moles have a tendency to become malignant.  Couple that with the almost 10 % melanoma risk Cowden’s patients carry, and in addition to the sunscreen, there are necessary scannings.

There is the gastroenterologist, who became necessary almost two years ago when the use of Celebrex to control the knee AVM started to rot out the GI tract.

And the ENT who was added so he could monitor the larynx to avoid unnecessary endoscopy but gauge improvement from the scary state she was in in May of 2014.

Oh, and the doctor who prescribes the digestive enzymes because they work, and no one else will.

And the pediatrician who doesn’t like to go more than 3 weeks without examining Meghan, who also keeps her on Acyclovir, prophylactically for chronic HSV that recurs on her face.

And, don’t forget the hand surgeon, who we love, (who doesn’t have a hand surgeon on the team?)  who has twice in 3 years removed vascular lesions, one from each palm.  And those surgical follow ups.

vomit emoji

Nothing is neat and clean.  Nothing is contained.  Nothing ever fit into those 2 weeks we once dreamed about.  This disease has projectile vomited all over our lives.  And it’s everywhere.  And it’s messy and gross, and we just want to take a hot shower and move on.

Because we haven’t even discussed fitting in MY appointments…

And a full-time job….

And an honor student….

Who is a swimmer….

And a theater buff….

And a community activist in the making…

All after work, and school, into the city, in traffic, and expensive parking lots, in hopes of getting back local in time for practice.

Last week I told Meghan over the Christmas Vacation we would need to see her gyn, and do her knee MRI, and my abdominal sonogram.  She was less than impressed.  The general sentiment is that we don’t get vacations, we get days off from school to go to the doctor.  I can’t argue.

overscheduled

The physical, mental, and social ramifications of this under-funded, “orphan disease” are having a profound effect on the life of my girl, and her mom and dad too.

That is one of the main reasons we work so hard to raise funds and awareness.  Maybe one day…

So tonight, we are grateful.  We are on our knees in gratitude, for the prayers that were lifted on her behalf.  We are thrilled to hear the words, “It’s not malignant,” but we are painfully aware the journey of monitoring another body part has just begun.

So if we are not shouting from the rooftops, please don’t think us ungrateful.  We are not.  We are relieved.  We took our first deep breath in weeks.  But, we did ask Santa for some new body armor, polished and ready for the new challenges PTEN Hamartoma Tumor Syndrome, (Cowden’s Syndrome) are actively placing in our way.

We ask that you continue your prayers, and continue to educate yourself about genetic cancers, orphan diseases and people like us, left to be our own advocates, in a world that isn’t overly concerned with how our story shakes out.

While we are in transit, to and from a lot of places we’d rather not be, we talk a lot.  Most of it is complicated.  But some of it, is quite simply about how a 12-year-old with a vision is going to change the world.

life goes on

 

Come join us on FEBRUARY 21st as we try to draw attention to Rare and Genetic Diseases! Beating Cowden’s Fundraiser LINK – PLEASE HELP US SPREAD THE WORD!

Time with "BOB" our favorite entertainer...

Time with “BOB” our favorite entertainer…