Jump to content
×
Are you looking for the BariatricPal Store? Go now!

Friday I was presented to the Tumor Board



Recommended Posts

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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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:

Share this post


Link to post
Share on other sites

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:

Share this post


Link to post
Share on other sites

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:

Share this post


Link to post
Share on other sites

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)))))))

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Trending Products

  • Trending Topics

  • Recent Status Updates

    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
      · 0 replies
      1. This update has no replies.
    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
      · 1 reply
      1. summerseeker

        Life as a big person had limited my life to what I knew I could manage to do each day. That was eat. I hadn't anything else to look forward to. So my eating choices were the best I could dream up. I planned the cooking in managable lots in my head and filled my day with and around it.

        Now I have a whole new big, bigger, biggest, best days ever. I am out there with those skinny people doing stuff i could never have dreamt of. Food is now an after thought. It doesn't consume my day. I still enjoy the good home cooked food but I eat smaller portions. I leave food on my plate when I am full. I can no longer hear my mother's voice saying eat it all up, ther are starving children in Africa who would want that!

        I still cook for family feasts, I love cooking. I still do holidays but I have changed from the All inclusive drinking and eating everything everyday kind to Self catering accommodation. This gives me the choice of cooking or eating out as I choose. I rarely drink anymore as I usually travel alone now and I feel I need to keep aware of my surroundings.

        I don't know at what point my life expanded, was it when I lost 100 pounds? Was it when I left my walking stick at home ? Was it when I said yes to an outing instead of finding an excuse to stay home ? i look back at my last five years and wonder how loosing weight has made such a difference. Be ready to amaze yourself.

        BTW, the liquid diet sucks, one more day and you are over the worst. You can do it.

    • CaseyP1011

      Officially here for a long time, not just a good time💪
      · 0 replies
      1. This update has no replies.
    • KimBaxleyWilson

      Three months and four days ago... I was in Costa Rica having a life changing surgery! Yesterday we had a followup visit with Dr. Esmeral via video chat and this morning my middle number changed.  I'm down 47lbs and two pants sizes. I can wear a Large tshirt for the first time in like... 14 years! Woot!! Everything is going great. I have zero regrets. I went down to the riverwalk with a friend and walked 2 miles on Monday without even getting fatigued. And no more snoring or chugging pickle juice for crazy leg cramps! I need to go to the gym more... I'm making new shirts next week so that will motivate me. LOL But I'm also just not as TIRED all the time! I have a LONG way to go...but seeing the progress on the scales and in the mirror is a huge motivator!! Thank you all for cheering me on and supporting me!!
      · 0 replies
      1. This update has no replies.
    • bellaamey

      https://alluniqueguide.com/java-burn-coffee-reviews/
      · 0 replies
      1. This update has no replies.
  • Recent Topics

  • Hot Products

  • Sign Up For
    Our Newsletter

    Follow us for the latest news
    and special product offers!
  • Together, we have lost...
      lbs

    PatchAid Vitamin Patches

    ×