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.

8 thoughts on “Thyroid PREvivor!

  1. Woo Hoo BENIGN is the word! YEAH! YEAH!!!!! And I love that – PREVIVOR! My girl is a Previvor from way back! We need a word for the mom who makes sure her child is a previvor instead of a survivor…… Of course, my Katie is also a survivor of Ovarian Cancer at 8 years of age, but a PREVIVOR of thyroid, breast, and endocrine cancer! Great big happy benign hugz to you Lori!!!! There is no greater news we can ever get!

  2. I just heard the biggest sigh of relief spread over fb land and beyond..Thank God and all the angels that are in constant motion over you.. I am in such awe of this child..her courage ( and yours) gets me everytime..

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