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.

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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.”

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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.

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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

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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.

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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…

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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.)

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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.

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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.

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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.

nyc bus

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.

hospital

 

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.

e card

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

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

bomb

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

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

denial

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

“Late March…”

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

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

I met with the scheduler.

I never heard from her again.

No-Phone-Zone-2

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

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

July 18th.

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

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

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

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

e cars schedule

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

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

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

What about September?

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

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

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

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

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

hidingcells_1200x800

Until I started to feel them.  Every damn day.

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

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

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

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

#beatingcowdens is a full-time job

This is Our Reality

Alone, in a crowded room.

alone in a crowded room

As I look around frantically trying to figure out exactly where, or how I fit, with anyone, my mind wanders.  I can’t seem to make conversation, or to pass the time socially as easily as others.  I watch.  I retreat as soon as I can.  I can’t quiet my head.  And, knowing the whole line of thinking that occupies my mind some days makes everyone uncomfortable, I step back into myself to cycle through reality.

occupied mind

“Those hormones?  Are they causing her headaches?  Or is it something more sinister?  How would I even know?  Do we need to use another MRI?  What if it is the hormones?  What choice do we have?  The doctor said she has to stay on them to stop the development of those “irregular cells” in the uterus they found in December.  They’ve already begun to schedule another D & C for July.  “You have to make sure…”  The uterus is a prime site for malignancy in Cowden’s Syndrome.  I got to keep mine until Meghan was 8.  Will she get to keep hers?  Will she have the chance to make the choice whether she wants to bear her own children?  And, even if we save the uterus and she wants to, will it be viable after 15, 18, 20 years of hormone treatment?  And at what cost to the rest of her body?  What about the breast cancer threat that looms large to a young woman whose Cowden’s Syndrome alone puts her at an 85% lifetime risk.  That coupled with a mother and grandmother who have had breast cancer… sigh…why is it even a topic of conversation when she’s 12?  It seems so unjust.  This issue shouldn’t have to be addressed now, well not ever really, but especially not now.  And when she has the headaches I have to give her something.  What about the headache medicine?  What about that esophagus we are trying to heal?

 

Is it those medicines that caused the horrendous reflux after Easter, or was it her MINOR indulgence into a few SAFE sweets?  Why should a slight indulgence cause such discomfort and vomiting?  Why does she have to be so careful all the time about everything?  No wonder she is so serious.  And what if it is the headache medicine?  What am I supposed to do to help her?  Tell her she has to deal with it?  I can’t imagine “toughing out” a blinding headache.  

 

The knee.  Oh the knee.  She tries not to complain about it, but I see when she struggles.  The AVM is finally stable, but the leg takes a lot of work to develop.  She works hard on it too.  But, the stamina isn’t there.  Hours in a pool yes, on land, no way.  Standing too long, walking the mall, or for a short walk, things we take for granted cause such pain.  And pain causes fatigue.  And on the occasions she relents and allows the wheelchair into use, she struggles.  Not for the need to use it temporarily, but for fear of insulting those who have to use it all the time.  She is proud.  She is frequently humbled.  She is conflicted.

 

And who wouldn’t be?  16 surgeries before the 13th birthday.  The need to be tough all the time, while you feel weak.  The desire to be stronger.  Having to fight, hard, for physical accomplishments.  Having to accept the ones that will never be.  Never giving up.  Pushing to be better.  To make the world better.  

 

She’s not perfect.  Never has been.  And oh, there are DAYS…  But she is good, in her heart.  She means well.  She has no spite or malice, and I can pray it remains that way.  I can pray that the children who don’t get it, one day come to understand her, just a little better.  That one day they can accept her,  for the good in her.

 

I scheduled 3 doctors appointments for the next three weeks.  Dermatology, orthopedics, and endocrinology.  The first is a screening.  Cowden’s Syndrome, melanoma risks.  Her father’s increased risk of melanoma on another unrelated genetic disorder.  Her grandmother’s melanoma this summer.  Every 6 months they told me.  Bring her every six months.  The others will work on long-term plans.  Spring break.  Every holiday, every vacation.  Every day off.  Doctors.  Not the mall, or a friend’s house.  Doctors.  For what?  And I’ve toned down the list quite a bit.

 

There are two bills of my desk.  One for her and one for me.  Both a battle.   Always a battle.  If it’s not the reality, or the appointments, it’s the bills.  And we are so fortunate to have insurance.  But, the hours.  Oh my goodness, the hours…”

 

I try to shake it off.  To stay focused on the good.  On the positive.  On the blessings, and they do abound.  But, so often it’s just me, and my head.  Working to get out of my own way.

I miss my Pop.  I miss my Grandma even though she’s still here.  I miss their goodness.  I miss my Dad.  I miss his listening ears.

I quiet the voices a little and try to follow the conversation around me.  I smile politely and nod.  I stay quiet.  “It’s good.”  “We’re good.”  That’s about all they can handle anyway.  Even the ones who genuinely do care.  Why drag someone to a place where there is absolutely nothing they can do or say?

cheshire cat

This is our reality.  This is Cowden’s Syndrome.  This is every day.  As long as we have breath, and strength, and stamina to shake off the pain, place the smile firmly where it goes and press on, we will.

Because the real reality is that every person in the room may have a similar string of thoughts in their head.  The reality remains that EVERYONE HAS SOMETHING…

been through something

I booked dinners for our Disney trip today.  I like to plan ahead.  Plus, Disney gives me a little extra strength, so that we can remain always,

#BEATINGCOWDENS!

 

Making the Most of It All…

Sunday night, coming home from a swim meet, Meghan outlined her goals.  Among them included, “no surgery for a whole year.”  To someone who hasn’t had 4 surgeries in the last 12 months, that may not seem quite that important, but to Meghan it was at the tip-top of the list.

Over the last several years she has spent more time living in “recovery” than just living.

Your Recovery Green Road Sign Over Dramatic Clouds and Sky.

She dropped 16 seconds total off her event times at this month’s meet, and 17 last month.  Insanity.  Except to a young lady who is now growing into herself, and her abilities.

 

She wants to swim.  Hard and often.

O22lQ

She wants to soar academically – no average under a 95 will do for her.

She wants to act, and sing, and be on stage.

She wants to participate in her youth group, and retreats, and live her faith.

She wants to raise community awareness of Cowden’s Syndrome and rare diseases.

She is on the move all the time.  I know, because I am with her.  Or helping her stay organized.  Or transporting her at least.

This weekend we drove 200 miles.  Today at least another 60.  LOTS of time for car chat.  Lots of time to get to know each other well.

onthego

Sometimes she drives me crazy.  Sometimes I frustrate her so badly she wants to scream.  Sometimes she does homework, reads, or works on projects.  But, lots of other times we talk.  About anything and everything.  And as much as I hate traffic, and long distances, I’ve learned to make the most of our time in the car.  I’ve learned to appreciate my captive audience, with the realization she won’t be in my back seat forever.

Captive Audience words on a ransom note in cut out letters in a message to forced or trapped customers or people

As a matter of fact after today’s appointment, she could easily be in the front seat.  All the time.  At a very trim waistline, and a height of almost 5 foot 7, she presents as YEARS older than she is.  Which I sometimes have to remind myself when I am busy expecting her to have it all together.  Sometimes she still needs me to help her along.

Today was the knee surgeon.  Six month follow-up.  He sees the shift in the patella.  He feels the scar tissue, and the clicking.  But, he said, she can wait.  She can wait until she’s ready before he cleans it out again.  With Cowden’s it’s a fine line.  How much pain can you deal with?  Because every surgery will lead to an overgrowth of scar tissue which carries its own issues.  Drag your feet.  Know when enough is enough.

Next we will have an MRI to check on the AVM.  As long as that’s stable, we should have a bit of time.  A bit of time to do some things besides recover.  A bit of time to be a bit more like a “normal” busy 12-year-old.  Well, like a “normal” 12-year-old planning a fund-raiser for more than 150 people with her favorite Disney entertainer… But, hey, she dreams big.

This kid. My stength. My motivation. My hero.

This kid. My strength. My motivation. My hero.

Tomorrow she goes to another doctor.  And about this one I just pray.  A lot.

In two weeks I get to remind myself I have Cowden’s with an unplanned visit to my plastic surgeon to question a poorly behaving painful prosthesis.

Plenty to preoccupy the mind.  In our immediate and extended family.

One day, one event, one obstacle at a time.

I did start my Christmas shopping.  After 2 years of holiday sadness, I am craving joy, and celebration.  I am craving the anticipation of the birth of the baby Jesus.  I am determined to remove myself from the holiday hustle and bustle.  I am determined to set my mind right.  Because none of us ever know.  Really.  And there is no promise of tomorrow.  Really.

But organization makes me happy.  And it’s about being happy.  And making the most of it all.  All the time.

organize

 

Three Year Old Memories

It was about 4 in the morning on March 5, 2012.  I was laying on the bathroom floor, vomiting the contents of my “nothing to eat or drink after midnight” stomach.  I was dizzy, lightheaded and weak.  The task looming … Continue reading

Scars…

There are days I forget.

I forget that it’s not just Meghan, but also me with this rare disease.

As a matter of fact, it’s actually uncommon for me to remember.

Maybe it’s survival.  Maybe it’s maternal instinct.  Maybe it’s denial.  Maybe it’s some combination.

But then there are days that it smacks me right across the face.  And it stings, no, actually it’s more like a scalding burn.

I post mostly about Meghan.  She’s my hero.  She’s my inspiration. She motivates me to be a better person, every day.  But,  if I really want this blog to be transparent, and I really want the truth about our experience living with and beating Cowden’s Syndrome to be out there, sometimes I have to allow my own inner self to be exposed. 

I feel good.  I really do.  Aside from a little lag from my thyroid, I am feeling better and stronger than I have in years.

But there are the scars.  They hide behind my clothes like a little secret.  Cause people forget.  And that’s what I want, because most of the time I forget too.

scar2

But then I look in the mirror, and I see the scars across the implants replacing the diseased breasts removed in the nick of time.  And my shirt doesn’t sit quite right.  And it’s probably my own fault, as I refused the tissue expanders necessary for a proper reconstruction.  I didn’t have the time, or the energy, or the desire, or the stamina to put myself through the frequent fills, the repeated pain, and the additional surgery necessary for the sizes to be equal.  It just wasn’t worth it to disrupt our lives longer.

I saw the plastic surgeon last week.  My two-year follow-up.  Hard to imagine.  She gently reminded me again that she could even things out whenever I was ready.  No cost thanks to the positive pathology for breast cancer, and the genetic mutation.  No monetary cost.  I’m not ready.  Yet.

I saw the breast surgeon last week too.  I see her every 6 months, so she can make sure nothing sinister is growing behind those implants.  The reality and the reminder that as fortunate as I was – I still had breast cancer.   And once you know for sure that those malignant cells had life in your body, you never look at things quite the same.  “No lumps or bumps,” she happily reported.  “See you in 6 months.”

I can’t wait.

scar 3

And there are the lymph nodes in my neck.  They were checked last week too.  Sonogram.  As long as they stay stable, we can leave them alone.  “But, if they grow…” she reminds me every time.  Six months for her too.

And my legs.  Fitting into the smallest size they have ever in my life the veins are protruding again.  The PTEN diagnosis, known for enhancing vascular issues, perhaps the explanation for the vascular problems that have caused 2 operating room visits and 5 in office procedures since I was 23.  But, it doesn’t really matter I guess.  The legs start with a familiar heaviness.  Then there is the throbbing.  The last thing I feel before bed, and the first thing I feel after the alarm gets shut down.  And the pulsing – like I can feel the blood moving the wrong way through the broken veins.  And the giant bulging, from groin to ankle, that makes it a little less fun to buy the shorts in a size 2.  I switch to “Bermuda” length and some sundresses.  I wait for the word that GHI has approved another vascular procedure.

Not to mention I saw the GYN Oncologist too.  Everything ramped up a notch with the “Cowden’s Syndrome” label.  There are no “regular” visits anymore.  Even with that benign pathology, it’s a forever commitment to the “Clinical Cancer Center” of the hospital.  Two years since the hysterectomy too.  Time marches on. You can barely see the scars from the laproscopy.  But I know they are there too.  A few inches under the implant scars.  Reminders of the year that changed my life.  Our lives.

The week finished with genetics.  Our geneticist – found by an incidental internet search at the recommendation of our physical therapist, is a gem of a man.  He greeted me with a hug and a smile, and exclaimed that I looked better than I did at my diagnosis.  Then he drew my blood.  More genetic testing.  This time not because of the Cowden’s Syndrome.  This time, it is to fulfill the wishes of my father.  Wrapping up a genetic counseling visit I completed in April, and after consent was received from GHI, the vial of blood was drawn to test for the markers for pancreatic cancer, the killer of my father, and paternal grandfather, as well as about 15 other markers I probably don’t want to know about.  We both said a silent prayer that the test yielded a whole lot of nothing.  We hugged again.  It’ll be about 6 weeks.

So this morning my shirt didn’t fit quite right.  The indentation on the right side was causing the shirt to fit lopsided.  And the vein bulging out of my right leg, especially just above the knee was a little too much for me to take.  I struggled with my tears, trying desperately to hide them from my extraordinarily observant soon- to- be -11 year-old.

This is the reality she knows we share.  Yet, I want so badly to help her maintain some of her youth.  Worry free innocence taken with the words, “You have a mutation on the PTEN gene…” and years of her own surgeries have stripped her of some of the privileges given only to the young.  There is something about 11 surgeries with no real end in sight, that can leave you a bit anxious.

scar 5

It only took a minute.  Although it seemed longer.  A hug from my husband.  My ever patient, loving soul mate, who makes me feel beautiful just by the smile in his eyes when we kiss.  And it was time to shake it off.

 

But not without first acknowledging that maybe that was quite a few appointments for a week’s time..

When we got in the car to head to the doctor, the Christian station was playing one of my favorite songs, “Fix My Eyes,” by For King & Country.

There are no coincidences.

And as we sang along, I looked in the rear-view mirror.

“Fix My Eyes”

“Hit rewind
Click delete
Stand face to face with the younger me
All of the mistakes
All of the heartbreak
Here’s what I’d do differently
I’d love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on youI learned the lines and talked the talk (everybody knows that, everybody knows that)
But the road less traveled is hard to walk (everybody knows that, everybody knows)
It takes a soldier
Who knows his orders
To walk the walk I’m supposed to walkAnd love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on you….”

Click the image to hear the song…

We spent Friday looking for sites for a fund-raiser for “Rare Disease Day 2015.”  We met a lovely woman who was surprised we weren’t raising money for us specifically.  We explained that we were grateful.  I feel well enough to work.  We have good medical coverage. There are so many not as fortunate.
scar 1
When it gets to be too much, I know to fix my eyes on things far beyond the mirror.  I have a greater purpose right in my own house.  And WE have a greater purpose.

We are BEATINGCOWDENS… together!