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.

Recovery – phase 3 = HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

At the end of the day… quite literally if you go by our arrival time last night… I guess all that really matters is that your little girl went through the surgery successfully and you get to arrive home, as a family to sleep in your own bed.

That’s why I refrained from saying too much in the midst of my Mamma Bear Rage last night.

mama bear

Because sometimes you need to sleep, and think carefully before you type.

The surgery went smoothly.  The surgeon did a fine job, and so did his team.  It was not their fault we were delayed by hours.  Someone else’s baby needed their attention.  And I can respect that.  He followed up personally, listened to Meghan, was cautious but not paranoid.  His attention is to the surgical incision. The follow up care needs to be guided by endocrinology.

Meghan’s largest discomfort, aside from the sliced neck muscles, appears to come from the “durabond” glue used to hold the incision together.  Things on her skin – even band-aids annoy her.  This is making it feel extra tight (doing its job,) and is making breathing and eating uncomfortable.

But we traveled to the hospital with our gluten, dairy, soy free cooler, and she was progressing on pretzels and our ginger ale, mixed in with a little “Ever Roast Chicken Breast.”  By the early afternoon she looked better.  The surgeon said to watch her till 5.  A fair number considering she didn’t hit recovery until 7 PM the night before.  If she was still good at 5 PM he would clear her to go.

And then there was endocrinology.  Perhaps spearheaded by the fact that Meghan’s endocrinologist is on vacation for all of January and February, or maybe just a poor information sharing structure, things fell apart at endocrinology.

When the thyroid comes out there is always the risk of surgical damage to the 4 small parathyroid glands that help regulate thyroid function.  That being said, even when they aren’t damaged, they are often traumatized for a bit.  Low blood calcium is OK for a few hours, but not a few days.  Like everything else, the body needs all things working together for smooth operation.  Originally it was explained to us, that it was not uncommon for the calcium to dip after surgery then recover.  They had to just see if it tanked out.  The decisions for her post op supplementation would be made based on these blood results.

So, she had blood drawn at midnight after surgery.  Then there was the draw at 1 AM for blood sugar.  Then there was a draw at noon.  Later in the afternoon one of the doctors/residents spoke as if Meghan had received a dose of calcium (2 pills and a liquid) prior to the blood draw.  I insisted that was not the case.  Then we were told the blood had to be redrawn at 6 PM and would be read at 7PM so discharge orders could be accurate.

Well, at 6:45 when I hunted someone down for the blood draw, again I thought it odd that the  calcium – that was supposed to be there before the noon draw, showed up 30 minutes AFTER the 6:45 draw.  I waited until 8PM and started hunting down results.  I was told that the ionized calcium had dropped from 4.8 to 4.3.  I picked up my copy to show them the midnight draw was at 4.8 and the noon draw was at 4.3,  Apparently the 6PM draw held at 4.3  There were two other tests, and I wanted the numbers.

Run around.  Run around.  Run around.  Finally after much work and some heated conversations we got the numbers from the other 6:45 tests.  The calcium held their own, indicating a drop off to be unlikely.

Originally we were told she had to stay overnight for a 1 AM and 7 AM blood draw.  Then we were told that since the labs were drawn with NO supplementation. ( I brought THAT to their attention) and she still did OK, that NO blood draws were ordered for one week.  NOTHING overnight.

Now it was after 10.

The day nurse, who was grossly overworked, and contrite and apologetic had missed the order for the calcium.  At least I was able to respect that she apologized right to  my daughter for muddying up the entire process and raising her anxiety.

The resident – 1st year who left because I was asking too many questions, and declared himself “off duty,” is the miniature version of why our medical system fails us.

The passing of the buck that took place around the endocrinology department – disgusting.

And this is the clean version.

Facilities.  Doctors.  People.  Can rest on reputations previously earned.  And then one feeds into another and that reputation carries them – sometimes too far.

We have been there, and done that.  And we are far from done.  So loyalty lies in individual treatment and care by individual doctors and nurses.  There is no one perfect facility.  There is no one perfect place.  Not even in Manhattan.

We gathered our things quickly.

We were in the car at 10:45PM.

My wise daughter asked what the lesson learned.

I said,”Trust your Mom.”

My husband said, “Educate yourself.  Advocate for yourself.”

I guess we are both right.

The ride home was tough.  Painful.  You use your neck for an awful lot of things.

But we got home in time to give her a well deserved Valentine’s Day Gift

Alex and ANI hero front

Alex and ANI hero back

She certainly is our Hero.  And as we travel down the road to recovery again – a road she is exceptionally good at – I hope she remembers both lessons from the car ride last night.  Especially the one to “Trust your Mother.”  For now I can be the advocate.  She has to find some time to be the kid.

Valentine's Day 2004 - our first hospital stay.
Valentine’s Day 2004 – our first hospital stay.
Valentine's Day 10 years later...
Valentine’s Day 10 years later…