Wednesday, January 27, 2016

Hide Your Crazy

On our way to some appointments in the city this morning, a song by Miranda Lambert came on the radio called 'Mama's Broken Heart'.  Here is a part of the lyrics...

Go and fix your make up, girl, it’s just a break up
Run and hide your crazy and start actin’ like a lady
'Cause I raised you better, gotta keep it together
Even when you fall apart
But this ain’t my mama’s broken heart

Powder your nose, paint your toes
Line your lips and keep 'em closed
Cross your legs, dot your eyes
And never let 'em see you cry

Go and fix your make up, well it’s just a break up
Run and hide your crazy and start actin’ like a lady
'Cause I raised you better, gotta keep it together
Even when you fall apart
But this ain’t my mama’s broken heart

I've decided this is our theme song for today.

Hide'n the crazy is what it's all about.

Today's been a freaky hard day for me on the inside, Shelbie is meh...and Little Bear is hanging by a thread and getting sick but won't let me take care of her so...I'm 0 for 3.  Can't fix a darn thing today.

On the outside, Shelbie and I are out of control with sarcasm and poor humor and Little Bear is probably so confused that we could be laughing at a such a wretched time.

So it goes...

I heard from Dr. S this morning!  Hearing her voice of reason was like a tall drink of water.  I miss her so much.  She is the real deal.  A doctor with heart and soul and love for her patients.  She isn't going to get a dime from talking me through this and we will never be her patient again but she insisted that I send her regular updates as this 'thing' with Shelbie unfolds.

I reviewed the past year with her and the fact that lymph nodes around Shelbie's lungs showed up last Spring and our Onc. glossed over it telling me I was just worrying about nothing. I'm sure she didn't mean to gulp and lose her words for a minute but she recovered well by saying, "Well, we can't change the past."  

Without mincing words she said, "Kath, you have to get her to Fred Hutch in Seattle.  I will call my colleague Dr. Keel and tell her the situation.  She works with my one other adult DC patient and many adult SDS patients.  You cannot afford to let doctors do this to you again.  Any local Oncologist you see, even in Utah is going to test for the basic leukemias and lymphomas and when those come back negative, they will send you on your way but Shelbie is too complicated to let this go.  Something is happening to her."

She went on to say that she is betting Shelbie doesn't have a typical lymphoma or leukemia.  Given her history, she is more worried about Lymphoproliferative disorder or an autoimmune disease that has gotten out of control.  She is never dramatic and never sounds panicked.  Instead she said, "Let's try to keep an open mind.  The symptoms sound alarming but I don't think it's dire yet.  We can't put this off but we aren't going to panic.  It could be a progression of her disease.  It could be other things."

So, what is lymphoproliferative disorder you ask?  Cancer.  Basically, it is a group of very rare and complicated cancers that affect the lymphocytes.  It can be 'common' in people with immune deficiencies and people with Telangiectasia's or AVM's like Shelbie has.

This thought actually crossed my mind last Thursday when we first heard the news but I haven't done any reading on it to see if I was on to anything.  I had wondered if AVM's can cause an abnormal amount of inflammation and that would send the lymph nodes into a tail spin and enlarge them.  I was sort of right...mostly not...on the right track though.

I don't know.  It's still anybody's guess what is going on.

In the back of my mind, I thought about Seattle as an option for care but it is so far away and I have such an old car and winter travel and missed work and hotel expense...yadda, yadda...I really wanted to stick around Utah, especially since Spencer is there and we could stay with him for free!

Anyways...I felt good about the plan after hanging up with Dr. S.  I called Dr. Keel's intake nurse and she said that Dr. Keel is actually not taking any new patients and is cutting back her practice.  WHAT?!!!  How could I have felt so much peace about her and now...this?  I begged and pleaded my case and I trust that Dr. S. will visit with her like she said she would so here we go again...It's in God's hands.

In the meantime, and in between time...we will continue to hide our crazy and take care of a sick Little Bear.

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