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Friday I was presented to the Tumor Board



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Friday my buddy Monica and I had our cases presented before the Tumor Board. It's sort of like we have turned in all our tests, we've presented our case, argued and defended our side, researched and presented for examination for the most rigorous test we have ever presented for. And now it is out of our hands. It is like waiting for Finals, like waiting for the Masters board to meet, or the MBA. We think that after this they should just hand us another degree.

I think I won't hear anything until next Thursday. I'm dealing with an Academic institution, after all. And school is my career, if you will. They have their own pace.

And as compassionate as Dr. L is, when I call in the middle of a freaker/tweaker he's not interested in making it stop, he's only interested in getting me to TEST. How can I get to a lab and get blood drawn. Can I drive in the middle of one of these? Hell, I can hardly string a coherent sentence together and he wants me to drive to a lab. Don't get me wrong, I love Dr. L, but he is a researcher, and sometimes they have their priorities a little skewed. He told me that I was going to hate him, since his priority was to find out what was going on with me while I was in the middle of on of those episodes, not to make it stop.

So, I can really appreciate it when folks are tired of testing, honestly I can appreciate it!

Speaking of researchers, I'm still having mixed results with my experiments with licorice. I was able to wake up NORMAL one morning, but it seems I need to keep eating licorice throughout the day to maintain the normal status. I will continue to track my progress. Dang, this means that I better start keeping a lab book! dang it.

Yesterday just before I went to bed I had a minor crash again. Like I was moving in slow motion. It was pretty funny. I figured that if I was doing tai chi during one of these slow motion phases, it would look like I'd completely stopped! HaHa! Too funny!

Anyway, the rains seem to have returned here to the Pacific NorthWe(s)t (the "S" is silent) I went out and got a box of fire logs. I almost couldn't get the box out of the cart, and there was no way I could get it out of my trunk.

I have to get cured soon.

Good thing I have a "freakishly high amount of testosterone" in my system.

Mike is going to Idaho today to get the rest of my stuff. I won't be returning to school soon. It's a hard reality. But soon is not never. And I realize that I won’t be using my spinning wheel there. I just won’t. And besides, that dry, dry climate isn’t good for it anyway. I’ve decided that when I return, I’ll bite the bullet and get room mates. I’ll just get housing in the new housing they built. It’ will be nicer than living in the old Travel Lodge.

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I've never heard of a "tumor board," but it sounds like no fun. What are you waiting for them to decide?

Big hugs to you through all of this, Crystal. You have an extraordinary spirit and are inspiring to all of us!

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Crystal, I am glad that you have Monica to support you through this. It is always nice to have someone that understands what you are going through. Please keep us updated, Mandy

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The Tumor Board is a big pannel of doctors that meet to look at all the evedence. Cushing's is rare, and Cyclical is even more rare. Dr. L has to make sure that all the ducks are in their rows.

Thank Mandy! If it wasn't for my Cushing's board I don't know what I'd do. Seriously. As important as LBT has been, the Cushing's board is litterally saving my life. No hypebole there. Unvarnished truth.

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You amaze me, Crystal. Most of the time I just read what you have going on and I'm stumped. I have no clue what to say or how to help, except to say that I'm cheering you on from here...as are countless others. Just, WOW. :love:

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I think, Kathy, that's all anyone can do, is cheer me on. I have a great medical team. One of the best in the world, It is out of my control, like so many things in my life. I just am along for the ride.

The key is to know what I have control over, and what I don't. What I can help with, and what I cannot.

It's sort of like when you go to a big professional ball game, you know? Or any sporting event. The home team always has the advantage because of the noise that gets generated, because of the energery, the good will and the "vibe" I guess.

That's what I'm coming here for right now. I need that energy. You know when the Queen song comes on, and every is stomping and clapping? STOMP! STOMP! CLAP! STOMP! STOMP! CLAP! We will, we will ROCK YOU!

You know what I'm talking about.

That's the energy I'm looking for. That's what people can do for me. That's what they can give me. That's what you can do for me.

Let me hear some noise people! :girl_hug:

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I hope this is enough noise for you, each and every icon is going to make you smile and scare the crap out of Pituna. Hugs, Mandy

:woot: :blah: :gluck: :gluck: :whoo: :whoo: :bump2: :bump2: :woot: :woot: :blah: :blah: :blabla: :phone: :woot: :drum: :drum: :drum: :laugh :laugh :brick: :humble: :humble: :wow2: :wow2: :fencing: :gossip: :gossip: :clock: :clock: :girl_hug: :eek: :hug: :horn: :director: :music: :music: :cheer2: :D :juggle: :laser: :clap2: :sleep :bolt: :eekB: :cell: :cell: :dance: :mod: :messenger2:

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STOMP! STOMP! CLAP! STOMP! STOMP! CLAP!

Your positive attitude amazes me! I'm here for your girl!!!!!

Like your signature says....NEVER GIVE UP--NEVER SURRENDER!!!!!!

((((((((HUGS)))))))

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STOMP STOMP CLAP, STOMP STOMP CLAP,

WE WILL, WE WILL ROCK YOU UUUHHHH WE WILL WE WILL ROCK YOU. BLAMMMM

ohh Crystal I hope that tumor board finds favor for you and sets it as a priority to deal with it, enough is enough that thing has got to go!! one way or another. Keep on pressin in babe your gonna get there! Petunia... BE GONE

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