Monday, July 5, 2010

Speed of Life

Yes, I am alive. I honestly mean to post more frequently and for some reason I never do. My excuse lies in the fact that when I don't know what I'm feeling; I certainly don't know what to write. But each time I sit down to write I realize it's therapeutic. It clears my head. I promise, I will get better at posting.

This week has been good. My counts are relatively unchanged. I am at 5 and 2.5mg of steroids each day. We are behind on the initial plan (for tapering) by two weeks. We are hoping to get back on track tomorrow if my liver permits. This Cyclosporin drug that I'm on (in place of Tacro) has a stench. Pills don't usually give me a problem, but I dread taking these. My Magnesium was above the normal range and we went down to 3 grams in my nightly infusion! However; I was reprimanded...I haven't been drinking my goal of eighty ounces. I was unhappy when they "slapped my wrist". I would like to know how many ounces they drink a day. Anyways, it's not that I don't want to drink it. I know that I am supposed to; I just don't always remember. They upped the amount of fluids by 1/2 a litre. So if you think about it; please remind me to drink.

I do have some wonderful news to share about my blood sugar levels. I am down to about two shots a day. My levels are finally under control. It's such a relief to know that the Diabetes is continuing to improve as my steroid doses decrease. Not only does that mean less shots, but I feel better. I can see myself improving. I'm not as tired. That feels wonderful to write. So wonderful I'm going to write it again; I'm not as tired. I'm not as tired. I'm not as tired. I have gotten so accustomed to being tired; I'm in tears just thinking about the power of those little words I just typed. It's a step in the direction I so desperately yearn for.

I was in the crowd for Ryan's first minor league start. It was extraordinary. I sat surrounded by friends and family (I was masked of course). I felt like I was witnessing the start of something big; something great for someone I love so much. Plus it is Allan's birthday today. He's nineteen. It's surreal how time is flying by. Life is changing. I knew it would happen sooner or later, but I didn't think I would feel like it's almost passing me by. Ryan comes home for "visits" and Allan is going to college; what happened to the two little boys that come and jump on my bed at 4am on Christmas morning to tell me what's under the tree? To be honest, I'm a little afraid. I always had plans and goals. I knew what I wanted. But my life has changed; along with my priorities and my goals.

Last night; it was 12:30am and my Dad was massaging my feet. We were channel surfing and somehow we ended up on Joel Osteen. His message revolved around knowing that God's got a plan for each of us. He said something that really stuck with me;"Satan isn't fighting us for where we are; he's fighting us for where we're going."

I've been working like a mad man on the Ceci's Climb website. I was hoping I would have it ready to show to you by this week. Unfortunately; it's not yet ready. I get so giddy when I work on it. I'm like a little kid with a new toy; marveling at all of the possibilities.

My hair is growing. I have a very short pixie cut. My hair has a little personality of it's own. It's dark brown, thick, and can officially hold a part. I touch it a lot. My Mom claims it's because I'm checking to make sure it's still there.

We started something new. PCH has a newer clinic located in the East Valley. They are working on expanding the Hemot clinic and I was the first transplant patient to be seen out there! Oh, let me tell you, I felt special. It is much less congested; not to mention cleaner! Since I was the first BMT patient they treated me like a VIP. I got a new blood pressure cuff at check in, was whisked straight into a room in the back, was introduced to some of the staff, and I was not forced to step on the scale barefoot. Plus; it is only eleven minutes away from our house!! The only downside is that the transplant team does not visit that office. So, each week we will have one visit downtown and one in the East Valley.

Chimerism pending...come back tomorrow for results.


  1. I had these thoughts come to mind the other night so I wrote this poem today. I really didn't know why until I read your post later today. Good to hear of your improvements!! Keep your chin up! joe


    There are tears of joy
    And tears of pain.
    Tears of fear
    And tears of shame.
    Most of us have stories
    Of tears to share
    In the times of victory
    Tears we joyfully share.
    In times of tragedy
    The tears show we care.
    Some tears we let flow freely
    Without the least of fear
    And others we try to refrain
    The reason to me is unclear.
    Tears of joy are wonderful
    But the tears I hold most dear
    Are at the times when I feel
    God holding me very near!

    Joe williams

  2. Oh, Ceci!! What wonderful, wonderful news!!! This sure put a smile on my face!! God is working! And Joe's poem?! How fitting!

    And just so you know...Krista and I are still very intent on coming back to Arizona in March, so get ready!! :)

    Love ya,
    Jena Belle

  3. Thanks, Joe for sharing that touching poem. Thanks Ceci for keeping us updated. It is a JOY to feel your STRENGTH when we're over 1400 miles away. You help us realize that we each have a plan, that God is in control, and that life has such meaning. We love you! Tamara and Richard in WA!

  4. Okay, Ceci, have you drank your eighty ounces today???? This is your reminder--mine, too. I haven't been drinking as much water as I should either. So, now, as I try to drink more, I intend to think of you and smile and pray.....and give thanks that you are doing better! I'm so glad you are not as tired---Praise the Lord!!! Joe did good on that poem, huh? Thank God for tears. Much love, Kathy & Rexie

  5. Ceci: You sure kn ow how to mess up a kitchen, but you sure know how to decorate cakes too. We always have so much fun when you come over to bake. That is one of the many reasons that I am so glad I just live through the back pasture. I think I have shared this quote with you once, but it is good enough to share again. "There is two ways to live your life. One is though nothing is a miracle. The other is as though every thing is a miracle." Albert Einstein. Love you more than you will ever know.

  6. I love you! I just cant get over how good your cakes are! Oh those 80 ounces a day! yay thats cool you got to see Ryan's game :) I love how you added that you get to wear shoes on the scale haha. I am sure you still clean off the finger pulse thing though! I can't wait to see the website!!! I am sure it will look absolutely lovely! I love you so so much :)