(Breaking the) Code of Silence

The song by Billy Joel…

“Code Of Silence”

Everybody’s got a million questions
Everybody wants to know the score
What you went through
It’s something you
Should be over now

Everybody wants to hear the secrets
That you never told a soul before
And it’s not that strange
Because it wouldn’t change
what happened anyhow…

…And you can’t talk about it
Because you’re following a code of silence
You’re never gonna to lose the anger
You just deal with it a different way

And you can’t talk about it
And isn’t that a kind of madness
To be living by a code of silence
When you’ve really got a lot to say…

           And as happens sometimes when there is a lot on my mind and I’m left alone with my thoughts, music creeps in.  Today Felix and Meghan are on a youth retreat with our church youth group.  They are spending the weekend.  I cleaned a bunch, switched to the winter drapes and started to transtition into holiday mode.  It’s been a few tough Decembers.  After losing my Dad in December of 2013 and then in the fall of 2014 saying goodbye to Grandma Gen, Uncle Jerry, and our beloved Allie dog, I was intent on getting some time to get my heart and soul peaceful for Christmas.  But, despite my best efforts and lots of early shopping complete, my heart is heavy with worry once again.
hope-despair
           I know people will say you can’t worry and have faith.  If that’s true then my faith needs some work.  But, I think its my faith that keeps a leash on worry and keeps it far away from depsair.  And for that I am grateful, although things are getting a little tricky here again.

           I began this blog years ago with no expectation of personal privacy.  I have been gratified by contacts made all over the globe, and have enjoyed having the ability to nudge people towards support or just read that our story gives them hope.  But, then I began to write about my daughter.  And we had tons of conversations about digital footprints, and things we can’t take back.  She has been like a champion, willing to share her story through me in the name of education, advocacy and awareness. She wants a place where people can read about REAL people REALLY dealing with Cowden’s Syndrome every day.

           Yet, in her day to day life Meghan is a bit reserved.  She is careful with her words, and trusts sparingly.  She is constantly aware of the different lens through which she views life, in light of her medical experiences.  She is acutely sensitive to the fact that even the children who care, are unsure how or what to do if she talks about her real life.  PLUS, so much of what goes on is hard for us to process.  There is just no way to expect a typical 7th grader to go there.  Heck, I can’t get the adults I confide in to wrap their heads around any of this.

Rumi-On-Silence
           November was supposed to just be me.  Traveling to the plastic surgeon to determine if my right implant ripped, and scheduling surgery if needed.  I go there Tuesday.

           But, November has already been very busy.  We met earlier this month with a new doctor, an adolescent gynecologist at NYU.  She listened to Meghan’s story.  A story that began with what we hoped was just an erratic start to a teenage menstrual cycle.  She reviewed the ultrasound from July with the “abnormal endometrial thickening,” and she asked some questions to my girl.  Who at 12 is clearly adult size, just shy of 5 foot 7 and a very trim 115 pounds.  My girl had her notebook and answers.

          Then there were more questions.  Because since the middle of August there have been less than 10 days with NO bleeding.  So there were blood tests to check hormone levels.  And there was a repeat sonogram scheduled.
Ultrasound_Machine
           There was also conversation with this very young, very attentive doctor.  A  doctor who made no bones about researching Cowden’s Syndrome and telling both of us that she found 2 cases in the literature of Cowden’s patients with uterine cancer – mean age 13.5.  Ouch.  She told Meghan that she had some investigating to do.  And then we would know more. We already had this information stored so the minds race.
******************************************************

Cowden Syndrome

Approved by the Cancer.Net Editorial Board, 11/2014

What is Cowden syndrome?

Cowden syndrome (CS) is part of the PTEN hamartoma tumor syndrome. Hamartomas are benign, meaning noncancerous, tumor-like growths. Other clinical syndromes that are part of the PTEN hamartoma tumor syndrome are Bannayan-Riley-Ruvalcaba syndrome (BRR; diagnosed in children), Proteus syndrome, and Proteus-like syndrome. CS is characterized by a high risk of both benign and cancerous tumors of the breast, thyroid, endometrium (uterus), colorectal, kidney, and skin (melanoma).

 *********************************************************

           The ride home involved some of the toughest questions I’ve ever had to answer.
truth
           And then the hormone levels came back utterly confusing.  The doctor said they make no sense.  It didn’t gel with the tickened lining and the bleeding.  It didn’t gel with anything.

           And the ultrasound Thursday at 4 pm was read by Friday.  Warp speed for you experienced parents.  The doctor called me at 7 Friday night.  The conversation led us to the necessity of a biopsy.  Too many things aren’t right.  “There is no formula, no plan to proceed in a child this young.  We just have to trust our instincts.”  I like her.  She cares.  But again, I’ve been doing Cowden’s longer.  I have to be alert.

           Welome to my world doctor.

           We’ve heard this song before.  “Could be…” “Maybe…”  “We’re concerned…”  and it’s been fine every single time.

           It’s just the weather is getting colder, and after school trips to Manhattan hold no appeal.  Missing work, making it up, racing to the swim practices she loves.  We’ve done this all before.  Different reasons.  But there seems to be very little real break in between.  And the pace is hastening.

         This week is Thanksgiving.  We’ll put the tree up.  We’ll work on some cards, and I’ll help Meghan organize a few more things for the Jeans for Rare Genes Fundraiser.

           Monday I should hear about a date for the biopsy.  Hopefully.  Then there will be at least 5 days after that date for pathology.

          And the “Code of Silence” permeates a few other non Cowden’s areas of life.

           This young lady I have is strong.  She is funny.  She is tenacious.  She is a swimmer.  She is an actress.  She loves to sing.  She is NOT Cowden’s Syndrome.  But IT is trying to play dirty with her again.  And I just don’t like it one bit.

We remain BEATINGCOWDENS!

(This blog, like all other ones of a personal nature, was approved by Meghan.)
AND WHILE MEGHAN CONTINUES TO DESIRE THE REAL STORY BE TOLD, PLEASE FAMILY AND FRIENDS, RESPECT HER “CODE OF SILENCE.”  SHE WILL TALK IF SHE WANTS TO.
IF YOU ARE ABLE, WE WOULD LOVE TO HAVE YOU JOIN US AT THE 2ND ANNUAL “JEANS FOR RARE GENES” FUNDRAISER.  A BRIANCHILD OF MEGHAN ALL PROCEEDS BENEFIT THE PTEN FOUNDATION AND THE GLOBAL GENES PROJECT.  JUST CLICK THE LINK BELOW.

https://www.eventbrite.com/e/jeans-for-rare-genes-2-tickets-19343557100?aff=eac2

4 thoughts on “(Breaking the) Code of Silence

  1. Dearest Lori and Meghan,
    We feel so fortunate that you share so so openly your triumph over adversity!! Yes triumph! We also have these “not right” test results along with the Cowdens are scheduled to see a pediatric/ adolescent special Gynecologist in Philly. Emily also has only recently (21) started to put her thoughts and inner most challenges to words to her community. Meghan is fierce and her passions must remain and through her passions (Music for Emily) with time and maturity those words will come. We must get together soon. keep touch. ❤
    Linda

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