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!

I have nodules WHERE???

It took me over a week to actually wrap my head around this one.

The summer is not just time for Meghan to get checked and cleaned up, it’s time for me too.  And this summer I tracked down a new doctor.

Sometime around the end of April my voice started to bother me.  I was getting hoarse easily.  I explained it away as allergies, season change, dust, “I must be getting sick,” and everything else I could think of.  Except it bothered me.  And that creepy voice that sneaks in sometimes to remind me that my body has already betrayed itself once, started to take hold.

hoarse

After almost 20 years of teaching, and never ever struggling to use my “teacher voice,”  I couldn’t project.  Simultaneously with the pain in my right implant, and the nodule being watched on the remnants of my thyroid, it started to get in my head.

I went to my primary doctor, and wasted several hours to get nothing that resembled an answer.  They suggested a thyroid sonogram.  I never went back.

I started researching ENTs locally.  I found very few who took my insurance, and fewer who seemed to have any voice experience.

I turned to the internet and found a voice specialist at a facility I trust in NYC.

I don’t really know what I expected from the exam.  I filled out the preliminary papers, and gave the basic Cowden’s rundown.  They did a few tests externally with a microphone, and another with a camera in my nose.  Not pleasant, but incredibly informative.

And there on the screen was a “benign appearing” nodule on the side of my vocal cords, causing them to briefly lock together when I make certain sounds.  Fascinating.  But bothersome all the same.

Not mine, but they looked a lot loke this.
Not mine, but they looked a lot like this.

They reassured me several times that the nodules were “benign appearing.”  I appreciated that, but reminded them many of my scars are from “benign, and benign appearing” growths.  I asked about the prevalence, and if it was linked to my Cowden’s Syndrome.  I got a very definitive, “Maybe, or maybe not.”  These nodules occur in the general population, they can be caused by overuse, but what had me perplexed was the problem seemed to start when I did the LEAST amount of teaching for the year.  I was out of my program for quite an extended time between spring testing and other professional obligations.  So, why now?

And, what to do?  September is looming, and my life will be in the classroom many hours a day.  I need my silly voice, my sing-song voice, my stern voice, my loud voice, my quiet voice, and my serious voice.  Elementary school students expect, and deserve nothing less.

I was given a number for a “voice therapist.”  And as of now my voice is getting a workout leaving messages for her.  I asked the doctor what are the chances this “voice therapy” could control the nodules.  He told me it “couldn’t hurt.”  I asked if this was like giving me compression hose for my horrendous veins?  Is it going to be a situation where voice therapy delays an inevitable surgery?  Because any scar tissue on my vocal cords seems scarier than the painful legs I’ve contended with for years.

voice

The answer is, there is none.  I will persist and connect with this voice therapist.  I will hear her out and try my best.  And in 4 months or so I will follow-up with the doctor to evaluate.  That is assuming the fall semester goes off without incident, and all my new students can hear me loudly and clearly.

For now, I’m using mostly the quiet voice.  Often mumbling to myself.  Because whether this is Cowden’s related or not, the whole “growing things” in my body is incredibly old.

Watch.  Wait.  Check.  Recheck. Remove if necessary.  That’s how we roll.

#beatingcowdens

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!)

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…

Dear Cowden’s Syndrome,

I’ve wanted to talk to you ever since you rudely introduced yourself to my family in 2011.  Actually it wasn’t even a proper introduction.  It was more like, “I’m here.  I’m staying.  What are you going to do about it?”  In hindsight, you’ve probably been with me from the very beginning, an explanation for the years spent in surgery for random growths all over my body.  And you know what?  I could have kept quiet about things.  I could have plodded along removing lumps and bumps as they surfaced, praying they remained benign.  But, you crossed a line.  You messed with my girl.

I went all those years not knowing.  I never understood why I seemed to spend an inordinate amount of time in doctor’s offices, generally being made to feel like an idiot for things they could not explain and did not understand.  But, I’m a mother now, and mothers get over those things because nothing is more important to them than the health of their children.

So when my then 8 year-old was introduced to you at an incredibly tender age, the mother beast in me came alive.  Before I could even contend with your existence I had to run damage control and get out in front of the storms you were plotting and planning.  I had to read and research and learn, because with an occurrence rate of 1 in 200,000, I typically knew more than any doctor we met.  And with our PTEN (tumor suppressor) gene officially listed as broken, the words cancer, cancer risk, and potential malignancy became part of our every day vocabulary.

That entire first year I was sure we had lost our very existence to the routine screenings you require.  A doctor for every body part, and a pediatric and an adult version of each no less.  Scheduling was a nightmare.  It’s a wonder I kept my job and my sanity.  And my girl, almost like a deer in headlights, tired of being poked and prodded and treated like a pincushion was getting plenty annoyed.  She’d already had 8 surgeries, and a ridiculous number of biopsies and MRIs before we met you.  Now there was this road ahead that was just flat out exhausting.  There were worries heaped upon worries.  And it got old real fast.

Our friends have tried to hang with us.  And they are an incredible lot.  But, it gets tiresome to hear that things just keep on coming, and that nothing here is “all better.”  Understandably, many of them have had to pull back.  Their own lives are busy.  Things continue, and just because you want to have your way with us, the world can’t stop spinning.  We miss socializing.  We miss casual get-togethers.  It’s hard enough to even visit properly with our family in between appointments, and hospital stays and the few activities you haven’t taken from my daughter.

Let’s talk about that for a minute.  Let’s talk about the pain.  The unforgiving knee pain that affects every aspect of her life.  Let’s talk about having to quit soccer in 1st grade, and dance 2 years later.  Let’s talk about her desire to run track that can never ever be.  Let’s talk about my girl, born with the heart of an athlete who keeps getting the rules changed on her.

The knee!  The right knee.  The one that has hurt since birth.  The one where the AVM (arteriovenous malformation) was supposed to be resolved in or or two embolizations.  Until they learned of you.  You would be the reason it continues to plague her, change the course of her life, and cause her undue agony on a daily basis.  You would be the reason the 5th attempt to fix it in November after 50ccs of blood leaked into her knee joint essentially failed.  You would be the reason we are awaiting a 6th surgery on the knee.  This one with the orthopedist and the interventional cardiologist at the same time.  One will assess the damage from all this blood, and the other will have another go at this AVM.

The AVM.  The likely reason the feet are now a size and a half apart.  Continuing to make life easy for my girl aren’t you?

And while we’re at it, let’s talk about the thyroid.  The 19 nodules you allowed to grow there, until “precancerous” prompted complete excision.  We beat you.  We got it out in time.  But, it was real close, and I didn’t like it one bit.  And as payback, 13 months later, the synthetic hormones still leave her chronically wiped out, and running on raw nerve.  The endocrinologist is confused.  He offers no explanation as to why it’s not ok.  They offer me no answers about the effects on the body.  Because they don’t know.  You’ve kept them confused, and it’s wearing on my nerves.

But, you know what?  You won’t win.  Not here.  Not in this house.  Not with my daughter and I fighting you every step of the way.  We like to call ourselves “Beatingcowdens,” because we are.  And we will continue to.

See, you messed with the wrong women here.

After we dusted ourselves off and learned to schedule the screenings and tests and surgeries on OUR time, we started to breathe a little.  There are so many.  But, they don’t OWN us.  Plus, I went on ahead of you and got some things removed.  That “prophylactic mastectomy” that turned into “thank goodness she got that DCIS we didn’t know was there out in time…”  well, that was a HUGE win.  And the hysterectomy before the uterine polyp could change its mind from benign to malignant.  Winning.

My daughter has decided to become an advocate for rare diseases.  Her work has begun small, out of a need to educate the people who judged her for sometimes needing a wheelchair to contend with that knee.  It started with some business cards that explain what Cowden’s Syndrome is.  It blossomed into assemblies at school, newspaper articles, and a friendship with our Borough President.

She took to the Global Genes Project, and their logo, “Hope, It’s in our genes.”  She had a friend make a denim ribbon necklace.  And “identity piece” for her.  She learned about all the rare diseases she could, and how so many of the babies who can’t speak for themselves need our help.

She embraced the creation of the PTEN Hamartoma Tumor Syndrome foundation in 2013.  She carries hope that one day their work will affect change directly in our lives.

She met up with friends through my online connections.  She corresponds with Colorado and Australia.

In February, with only guidance from me, she organized a “Jeans for Rare Genes” fundraising breakfast that generated $12,200 for her two favorite charities.  Over 150 people attended that event.  Community support was overwhelming.

Oh, and the heart of an athlete you tried to take from her… you lost there too.  She is a swimmer now.  And this year she qualified for Silver Championships in the 100 butterfly for her age group.

So, despite what you may have tried to do to our lives, you are losing terribly.  You are something we will have to deal with for the rest of our lives, but you will NEVER own us.  You may try to be pushy. You may be downright rude, hurtful and insensitive at times.  But, that’s OK.  We’ve handled worse than you, and we’ve come out just fine.

As a matter of fact, maybe I should say thank you.  Thank you for lighting the fire in our bellies.  Thank you for helping us find our self-confidence.  Thank you for giving us the fight that forces us to never ever give up.  Thank you for teaching us that we can make a difference.  Thank you for empowering my beautiful young lady with a forceful strength that WILL change the world.

You’re not the boss of us.

Forever we remain,

BEATINGCOWDENS!

Lori & Meghan

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RFTC 2013B

Thyroid PREvivor!

The phone  rang at about 7 PM.  It’s Friday night.  I did not expect the call to be from the nurse practitioner at the endocrinology office that manages Meghan’s care.

snooze-and-lose

Wednesday we went in for a surgical follow up appointment.  The incision is healing nicely.  She is still sore but cleared to return to school Monday… and swimming too.  While were there, they asked for some lab tests to be rerun.

Calcium levels which were botched Friday before discharge needed to be looked at again.  And the parathyroid hormone to make sure it was still functional.

Before we left the facility, we received word that the calcium levels were actually high.  No need for me to even start ranting again.

We were advised to keep her on the current supplementation level for 4 weeks, then wean her off and revisit the surgeon in 8 weeks.  We would also see the endocrinologist at that time.  Although, endocrinology would be ordering lots of labs in the mean time.  All of this I understand.

Except, when the nurse told me she was calling, at 7 on Friday night (when the results from Weds. labs were in the system on Weds) to tell me to keep Meghan on her baseline calcium (the Isagneix Calcium she has taken for almost a year) and lower the supplemental pills they gave from three to two.

Isagenix-IsaCalcium

Seems logical.  EXCEPT when we were discharged in that debacle Friday night they altered the script from 3 to 2 already.  So so we go down to one?

The nurse stuttered, confused.  I still don’t think anyone understands what a mess they made out of her care on Friday.  No, she said.  We will rerun the calcium in a week.  Anyone want to wager that it will be too high?

As she went to hang up I asked about the pathology I had been waiting on pins and needles for.  Almost as an afterthought, she said she didn’t think it was in.  Then, “Oh, it’s right here… want me to send it to you?”

Um, YES.

“Everything seems ok, do you have a fax?”

YES!

And that was the end of the conversation.  Left to read the pathology report on my own I pored over it as best I could.  Confused that it was date stamped 6PM on Weds…. and I found out it was in by accident.  But, whatever…

PathologyBanner

So without the aid of a doctor, and with my somewhat well developed medical vocabulary, everything looks to be

BENIGN!!!!

There are things about it I don’t like, of course.  Like that some of the “lumps” are referred to as nodules, while the three problematic ones are called “tumors.”  The largest of these tumors measured 2.4 x 1.3 x 1.3 cm, and the others were not that small either.  No wonder this kid was choking!  There is “hyperplasia” all over the place too.  But it seems like the bottom line is, we got in in time.

Cowden’s we BEAT YOU to it!

Of course there is no crystal ball.  There is no way to say for sure that it WOULD HAVE become cancerous, although I think we all know the reality.  There is no way to know if it could have stayed in a little longer, but I like to think eliminating the anxiety over the constant FNAs, which incidentally had caused quite a mess of scar tissue according to the surgeon (THANK YOU COWDENS!) will be the better choice in the end.

It is easy  easier, to make decisions about prophylactic organ removal when it is your own body.  You just do what you have to do and move on.  But my husband and I had to make the conscious decision to remove something from our child’s body.  Can she live without it?  Absolutely.  But just because you CAN live without something doesn’t always mean you should, and it doesn’t mean that removing it is without consequence or effect.

As a new mastectomy patient I read lots of stories of brave young women who had decided not to spend their lives waiting for cancer to get them.  They had taken steps, usually to get ahead of BRCA1 or BRCA2.  I immediately admired each of them.  They somewhere along the line coined the term “PREVIVOR.”

previvor

https://www.facingourrisk.org/FORCE_community/previvors.php

Primarily used to deal with the risk of hereditary breast and ovarian cancer, I think the term has a broader reach.  My girl does not need to be a thyroid cancer survivor.  She is a PREVIVOR.  She got there first.

decisions options

For this I am thankful.

BEATINGCOWDENS!

This card was created out of her need to "teach" others about Cowden's Syndrome.
This card was created out of her need to “teach” others about Cowden’s Syndrome.

It’s not malignant… BUT…

It was an interesting phone call this afternoon.

I knew from the caller ID that it was going to be the hospital with the pathology report.  Home on a snow day, relaxing with the family – I took a deep breath.  It was the endocrinologist on the other end of the line.

“I have the results of the pathology…”

AND???

“The samples are not malignant, but…”

YAY, and UGH!

And there followed a conversation that lasted several minutes.  I tried multiple times to use the word “benign” to refer to the results.  Each time I was carefully deflected.  When he spoke he never said “benign’ once – only “not malignant.”  Synonyms – yet apparently not interchangeable.

Someone less in tune might have missed this conversational nuance.  I don’t miss much when it comes to my daughter.

So the doctor recounted how each off the 4 cell biopsies obtained through the Fine Needle Aspiration, showed cells that were “not malignant.”  When I asked about the cells, specifically remembering the “precancerous” title given to the cells that had brought us to this hospital to begin with, he told me again the report says they are, “not malignant.”

SO WHAT’S NEXT?

whatplan

I know I didn’t imagine the deep breath on the doctor’s end of the phone when he began, “Typically, we would follow the case in 6 months with an ultrasound, and I think you should make that appointment.” Then there was a deep breath and a pause.  “I also think you should take her to see a surgeon – just for another pair of eyes.”

Now I was thoroughly confused.  “Why? Do you think the throat clearing that has been going on could be related to the nodules?  What about the Fine Needle Aspiration?  How accurate is the test?”

He addressed one question at a time.  Almost as if he expected them.  He and I were not fast friends, and he often seemed annoyed by the countless questions I ask.  It never stopped me, but I couldn’t help but notice he was almost anticipating my questions today.  Maybe he was even welcoming then.  I flashed back to that visit on December 19th where he was visibly uneasy about the feel of that right thyroid.  “The FNA is accurate 90-95% of the time.  Usually that is not an issue because thyroid cancer tends to grow very slowly and if we follow every 6 months, we will typically catch anything we need.  That being said, in a situation like Meghan’s where there are so many nodules, and there is Cowden’s Syndrome, it sometimes is harder to manage. In regards to the throat clearing – I don’t THINK it’s caused by the nodules, but again I can’t be sure.  Why don’t you set up a consultation with the surgeon?”

confused-face

Deep breath.  It’s good news I kept reminding myself.  It’s not cancer. (Yet… nagged the little voice that never knows when to shut up.)  I reassured him that I would schedule the appointments with him and the surgeon.  Of course after I arranged to have the pathology and ultrasound reports Emailed to me so I could agonize over every detail…

I scheduled the appointment for the first week in June.  I tried for the first week in July – but he is on vacation that MONTH…  Then I sat down to Email Meghan’s hematologist/oncologist the reports and ask her opinion.  She concurred with the endocrinologist and approved of his choice of surgeon.

Within 45 minutes my phone rang.  The caller ID showed the hospital number again.  This time it was the surgeon’s office.  They were contacting ME, at the doctor’s request – to set up a consultation for Meghan.  Well I have to tell you that didn’t do a whole lot to ease my mind.  Obviously it was nagging at the doctor enough that he reached out to be sure I made the appointment.  Scheduled.  February 25th.  I couldn’t get a time because they call the day before with that.  So, I explained how much I really NEED to be at work.  They made me no promises.  The 25th it will be.  Regardless of the time.

The snow was so pretty today.  So nice to be home as a family, to shovel, to play, to take some pictures, to watch an old movie.

I sat down to type this almost three hours ago, but somehow as Meghan was getting ready for bed she developed severe pain in her back and a ruthless headache.  Reminders that even an hour or so in the snow is too much for her body to endure.  Frustration.  Fear.  Two hours at her side, her father and I alternating pressure on the most painful spots.  She’s asleep in my bed now.  Moaning.  The night will be long.

frying pan fire

Some time this afternoon I realized again, that this is just how its going to be.  We are going to walk out of one fire, while walking around another.  We aren’t going to know the hows and whys.  We aren’t going to be able to make many plans despite our best efforts.  This is life with Cowden’s.  This is our life.

And tonight, as I held my husband’s hand, and we each had one hand helping soothe Meghan’s agony, I realized again that through the depth and power of our love for each other – all of us – this works for us.  It’s not what I would have chosen, but it’s what we have.

Never in my wildest dreams could I imagine a day without the two of them.  Somehow, that has to make us the luckiest family in the world.

think happy thoughts

And that is my happy thought tonight.

Happy New Year!