It’s Complicated…

I was in the stairwell close to the 5th floor of the nursing home where my grandmother resides when the phone rang.  I paused, startled by the ring, and trying to suppress my slightly out of shape panting before I acknowledged the call clearly coming from the medical office we had visited earlier that day.

It was Tuesday the 11th.  “Spring Break” had begun Saturday the 8th.  Early that Saturday morning I had left on a road trip alone to the Marine Corps Base in Quantico where I had the privilege of watching a Marine who served with my Dad receive the Bronze Star with Valor – almost 50 years after the day it was earned.  It was a whirlwind trip – 5 hours down that morning, and a busy, fun, emotional day that lasted well past midnight.  I returned to Staten Island by 12:30 PM Sunday, in time to catch Meghan’s 1 PM Swim meet.  Felix took “off” the workweek and spent Monday and Tuesday overseeing the installation of air conditioning in our house.  It was 24 hours well spent – 12 each day- but the inevitable trail of dust and dirt needed to be tended to as well.  So, I had headed to this appointment alone with Meghan earlier in the day.  Now I was trying to visit with Grandma, although she’s often unsure I was ever there… I still know.

I took a deep breath before I answered.

A lovely young woman, whose cheery voice caused me to immediately forget her name asked, “Is this Meghan’s mother?”  That is my favorite title- depending on whose asking.  I tried my best to muster and equally cheery, “Yes, it is.”

“Oh, good.  I was asked to set up Meghan’s surgical date.”

Sigh,  Even though I knew the call was coming – it doesn’t get easier.  I also knew I had very specific directions from Meghan that I was to “get it done as fast as possible.”

“How soon can we do this?”  I asked.

“My first available is May 11th.”

“REALLY?  A whole month?”  I thought of the anticipation and the anxiety that would build as the pain increased.  Then I realized something worse.  May 11th is opening night for “Bye Bye Birdie,” her school play.  Cast as Rosie she’s been preparing forever.  There was just no way.  I swallowed hard.

“What if I can’t take that date?”  I held my breath,

Cheery changed her tune.  I’m sure she thought I was being difficult.  I tried to explain.  No luck.

“The next date is May 20th, then you’re into June.”

I was playing out the June calendar in my brain.  ComicCon with Dad, school dance, graduation, West Virginia… forget about the Long Course Swim Season and the 2 meets we knew she’d have to scratch out of, and the last CYO Swim meet she’d ever be eligible for- that was out too.

There was never going to be a good time to be out of commission.

Deep breath.  “Any chance you’ll have cancellations?”

“No.”

“Ok then.  May 20th it is.”

And after telling me I’d need to give up a day the week before for formal pre-surgical testing, which is a first for us, as she grows up, I didn’t bother to explain I’d just missed 16 days of work for vocal cord surgery.  I just said, “Thank you.”

Meghan’s relationship with her right knee is complicated.  It started giving her trouble before she could talk, as her first babysitter will attest to hours rubbing that knee.  As she grew, it got worse.  It always seemed to bother her.  She pushed, and pushed.  Eventually it was hot to the touch and pulsating.  The diagnosis came in 2008, after multiple mis-diagnoses, including “her pants are too tight.”  Finally, a team at Sloan Kettering, adept at ruling out cancer, was able to diagnose a high flow arteriovenous malformation (AVM) in that knee.  We were sent off to Interventional Radiology at Lenox Hill, where the doctor confidently told us he could eliminate this AVM in “one procedure – 2 tops.”  Between December of 2009 and February of 2012 there were 4 embolizations on that knee.

The doctor seemed almost relieved when she was diagnosed with Cowden’s Syndrome in the fall of 2011.  It seemed as if he felt better about himself, like there was another explanation to justify why the darn thing just wouldn’t quit.  By that point she was being run through the surgical mill, so we welcomed the 2 and a half years of monitoring.  It seemed to stabilize.

But, as everything overlaps and one thing leads to another, there was pain.  There was pain that she was repeatedly told should not be there.  Yet, no matter what they said, the pain was there, and it was consistent, and it was real.  She pressed through.  She stopped soccer and tried dance.  The knee was cut out for neither.  She found her way into the pool in the spring of 2013.

By that fall we had signed her up for a 12 month competitive swim team, and things were looking up.  She swam a full year, getting stronger, becoming more confident, and finally feeling like an athlete.

There were other surgeries in between.  And there was that knee pain.She had been prescribed Celebrex to substitute for the Advil that was being consumed in clearly excessive quantity to allow her to function.  And the Celebrex was wonderful.  Until it wasn’t.

And in May of 2014, two months after a complete thyroidectomy (thank you Cowden’s) she lay in the hospital in severe GI distress.  It took a week to stabilize her.  I was scared.  Out went the Celebrex, fried food, and a whole host of other goodies.

But, little did I realize, that Celebrex was likely the reason the AVM had quieted down.  Apparently the drug has properties that work on blood flow.  A few months off of the Celebrex and all hell broke loose.  Literally.  It was November of 2014, the Tuesday night before Thanksgiving when she collapsed outside of swim practice, unable to walk.  Our travels that night took us directly to Lenox Hill ER because we were sure it was the AVM in action again.

Proven right when the surgeon showed up early the next morning giving me a surgical time for her, they drained 50ccs of blood from the knee that day.

Blood and bone and tissue are not friendly.  It’s like neighbors invading space.  You can tolerate it for a while, but it doesn’t take long before the damage is irreparable.  It became evident there was structural damage beginning because the blood had begun to wear things away and allow the knee cap to move to places it did not belong.

We were advised to consult with an orthopedist, and we did.  He wanted a coordinated arthroscopy where both he and the interventional radiologist would be in the OR together.  It became an orthopedic procedure.  The patella was moved back where it belonged.  Things were cleaned out.  Recovery was smooth relative to the emobolizations.  We were told it would last a few years.

In January 2017 we were pretty much released from interventional radiology.  We were told the AVM seemed quiet and we need only bring her back if she becomes symptomatic again.  In February the knee pain started again.  Slow, but steady, it kept growing in duration and consistency.  At a routine visit the orthopedist mentioned the potential need for another arthroscopy.  He reviewed the January MRI and showed us where the patella had shifted again.  He said her growth plates were “wide open” (a scary thought at over 5’7″) and that this would continue to be an issue at least until she finishes growing.  He offered her a “patella stabilizing brace” for 6 weeks, to see if it would do the job he wanted done.

Tuesday the 11th he looked at her knee for less than 2 minutes before he started making plans for the surgery.  He explained to us what he needed to cut and move, and why it was time to get it done.  We had the necessary conversations about length of time out of the pool, and other restrictions.  We left, quiet and resolved.  The only thing she asked me was to just get it done as soon as possible.

So when the phone rang in the hall last Tuesday afternoon, I felt sucker-punched, again.  Regardless of how many times I tell myself, and her, that it “could be worse” and we have to “look at the bright side,” the reality is that sometimes it sucks.  And that’s just the frank honest truth.  Scheduling your 7th knee surgery in 13.5 years is just not ok, not even a bit.  I was grateful for Grandma, and the ability to be distracted for a bit.  Without her memory, she is just real.  That was a good day.  And that day she loved having me.  I cherished the visit.

I spent Wednesday in the grocery shopping marathon, and Wednesday night at swim.

Thursday was for an extensive blood draw for Meghan and a triple dermatologist appointment.  Meghan headed to play practice, and I traveled to my vocal follow up in NYC.

My report was adequate, but not what I had hoped for.  Still swelling.  Still be very careful.  Still rest when you can.  Still exercise caution when you get back into your program on the 19th.

Friday was for vocal therapy.  And for trying to put the house back together.  And for painting upstairs, and washing the dist off the curtains, and visiting my in-laws.  It was our 17th Anniversary.  We sneaked an hour or two for dinner together…

Saturday was voice lessons, and…

Somehow it bled into Sunday, and Easter and some time with family.  But, it was immediately back to the painting.

By Monday I was waiting for the blood results, hoping to catch a call from one of the three doctors on the order.  We hit the orthodontist to have the retainer tightened, and a few things at Costco before it was time for swim…

I am focusing on the sunny days.  I am trying to find some time within the chaos to be still.

I asked Meghan why she was so uptight the other day.  It really was a stupid question.  This was the grossly abbreviated version of ONE aspect of her real life.

And tomorrow she will have to practice smiling and responding to the question “How was your break?”  in the only socially acceptable way.  “It was fine, how about you?”

Fine… it has so many meanings.  We don’t want to bring people down all the time.  It gets hard to have a conversation sometimes though.  Felix and I realized in the years since we’re married, one of us has been in an operating room somewhere in the neighborhood of 34 times.  A lot of our days are spent recovering.  Physically, mentally and emotionally recovering.  Fighting financially against incorrect billing, and generally trying to breathe.

I’ve said it before and I’ll say it again, we would not trade our lives for anyone’s.  However, just like in anyone’s life, some days are better than others.

I’m anxious for a vacation not peppered with appointments and surgeries.

Until then, maybe I should teach Meghan to answer “How was your vacation?” with “It’s complicated…”

#beatingcowdens

Overlap and Regrowth – Living with Cowden’s

So, the night I was recovering from my breast surgery on August 19th, I haphazardly checked my Email.

There sat an Email from Meghan’s endocrinologist that shook me out of my anesthesia recovery pretty quickly.  There is no time “in between” because there is usually SOMETHING going on.  Overlap is a way of life.

Meghan had had lab work drawn the 3rd of August.  Routine thyroid labs, and some tests from the gyn worked in.  On the 18th the EMail from the gyn told me she was suspicious of a few lingering “issues” and we would address them at her late fall appointment.

bloodwork

The endocrinologist’s EMail said he was concerned about the resurgence of her “thyroglobulin” levels.  He wanted to now treat her as a “high risk” thyroid cancer patient.

I almost dropped the phone, alone in my dark room.  The last paragraph said he’d be on vacation for two weeks, and we could talk when he returned.  I read.  And I reread.

thyroglobulin

Decoding step by step – “thyroglobulin” is created solely by thyroid tissue.  Someone with a complete thryoidectomy would have non-detectable levels about 3 or so months post operatively.  Only thyroid tissue generates thyroglobulin.  If some was left behind after her surgery a small number would have stabilized early.  But for it to be gone, and then show up…  This meant there had to be regrowth.  And yes, it happens.  Maybe to everyone, but definitely people with Cowden’s Syndrome.  We regrow lymphoid tissue.

superpower

It’s a superpower of sorts.  Except instead of being a really fun, save the world, or generate sunshine and happiness, superpower, it’s more of the – hey let’s add some more worry to your life superpower.

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While the pathology on the thyroidectomy was totally benign, the mind can play lots of tricks.  Lots of tricks.

I’m not slow.  I am pretty well read.  I’m equipped with the knowledge that having faith and worry are counterintuitive.  Except I’m honest.  And with matter of my girl, worry sometimes overwhelms.  I never claimed to be perfect.

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So I spent the last 6 or 7 weeks retreating.  I barely spoke of this fear, this nagging thought that not only could the thyroid be growing again, but what if… what if all those precancerous things that we took out with it were somehow festering.

I made it my job to access the lab work.  And it was a JOB.  You would have thought what I was asking for just to see a list of messed up thyroid numbers.  We live in a pretty crazy society.  But, finally, after 2 weeks of labor, and getting increasingly vocal, I received 4 copies.  All on different days.  All from different people.  But, I got to look at the numbers.

I am a numbers person, so I took some relief in the thyroglobulin being only 3.  Undetectable was better, but 3 was on the better end of things.  It was clearly well under that “10” I had found.  So I took to waiting and ticking away the days until the next blood test.  There was a thyroid dose change, and 6 weeks.

I broke my toe while recovering from the implant exchange, a few weeks after learning I was suffering not only from a single vocal cord lesion, but vocal atrophy secondary to premature aging, the latter which was likely due to the hysterectomy that became necessary after the breast cancer diagnosis in 2012.

And yes, I meant that to be a run-on.

It all kept me as occupied as I could while I hid in the start up chaos of September.  I hate September.  But, when you’re suffering personal angst and need cover under which to hide – it’s September for the win.  I poured myself into setting up 25 classes, and over 550 students, logistically, and academically.  It took some time.

And I kind of just ducked.  Phone calls, texts… I played along.

“High Risk” thyroid cancer patient… like a recurring nightmare.

One of the reasons I was afraid to talk was the fear that someone would talk to be about thryoid cancer being the “best” cancer.  Please, no one ever do that.  When it comes to my child, a survival rate in the 90%s doesn’t soothe me.  When it comes to my child, I, like every other parent want 100%.  Nothing less.

I was scared.

We got the labs drawn at the hospital on Weds. the 28th.

On the 30th I was exploding.  Every second seemed like an hour.  Every scenario was playing through my head.  So when I got the call that the test wouldn’t be ready till Monday I dissolved into a tiny puddle.

And then I did what every other mother does.  I put on my big girl pants and got through the weekend.

Then Monday there was a brief phone call.

The thyroglobulin has returned to undetectable.

WHAT?  How does that even happen?  I sent out a million questions rapid fire.  Most of them had no answer.

Crisis averted.  Prayers answered.

gratitude

I explained to Meghan why her Mom had been a bit extra on edge.  She’s really growing up because she was grateful to have not traveled that mental journey with me, and appreciated me letting her in when it mattered.

Next blood test November 11.  And we’re going with the theory that the thyroglobulin was a one time deal.  An error.  A miracle.  Whatever.  A win.

We’ve got 6 weeks.  Some Mommy doctors.  Some swim meets.  6 weeks.  Sometimes that feels short.  Right now it’s blissfully long.

On my knees in gratitude, we remain…

#beatingcowdens

thanks-beach

 

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.

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Until I started to feel them.  Every damn day.

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

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

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

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

#beatingcowdens is a full-time job

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.

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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!

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