Tuesday, May 11, 2010

The Line Graph of Life

I feel like I'm in the montage of a movie. You simply see the characters live their lives while music plays; the plot unchanging. Ooo, better example: if we were to make a line graph, we'd be on a flat line. Nothing is changing drastically. Okay, I'm done making comparisons. My point is that there is nothing to yell from the rooftops or to cry about. My liver is improving at the same pace of my recovery; slowly. But; it's improving! The doctors print out charts to show me the course of recovery. They know me so well.

My Tacrolimus level dropped. It was nowhere near therapeutic Monday. I bet you can guess what came next; an increase! It didn't come as a huge surprise because with the change in medication; the Tacro will be metabolized faster. But it was still a disappointment. It also gave them a reason to schedule a lab draw today to re-check the level. I wasn't that upset; it gave me a reason to get dressed and somewhere to go this morning.

I've been fatigued and achey. My joints and back hurt for an unknown reason. But I'm pleased to report the burning from the Tacro has improved. We got the new antibiotic from the Apothecary shop today. I have to take it three times a day with a fatty meal (oh darn). Phone alarms are going off all of the time. I have to be up at 8am to take it, 10am is Tacro and other pills, 3pm the antibiotic, and 10pm Tacro and the antibiotic again. It's quite the medication schedule. My glucose continues to vary. It's still sky high. They don't want to resort to insulin, but we know it's an option if necessary. It's just one thing on top of another. However; my Mom and I were talking and it's all manageable. Yes, annoying, but minimal compared to what we could be doing. The best news is that we started to taper the steroids Monday. I am now on a 20mg dose twice a day! My entire family (and our grocery list) are thankful to be headed down on the prednisone.

We were sitting in clinic this morning waiting on labs and I heard the nurses talking about another little girl. They were discussing whether she needed an infusion or not? I shuddered. It took me back to when I would stand at my door and attempt to listen for my name and what my day would entail. There was a horrible feeling in my stomach, but my heart was filled with so much hope that I would hear that my counts had miraculously improved. I'd run back to the table when I heard Dr. Etzl's footsteps. Each time he'd tell me the infusion I'd need and the plan. I'd smile and say okay; crying on the inside. I haven't had a transfusion since March. It brings me to the quote "When the journey seems long; there's no better time to look back and see how far you've come." Although I feel like I can only look back so many times; each time I do, I realize I'm a little further. I've conquered one more day and one more struggle. And that in itself is enough to keep going forward (ice cream helps too).


  1. I do believe that ice cream can help anything and everything that is ailing us! Can you believe all the empathy you are gaining through the bumps in the road? You are amazing. We all draw strength from you. Richard asks daily for an update and it has been a JOY to report so much good news. Can you even imagine how many prayers are being said in your behalf? Can you imagine how many of the medical people are being influenced for good because of your FAITH? Way to go girl. We're behind you ALL THE WAY! Make it the best day yet! Hugs from WA!

  2. Jena is a firm believer that ice cream helps, too! And you are right...when you look back, you have come sooooooo far. And, I am sooooooooo grateful for your determined and tough spirit!!! Love and prayers, Kathy & Rexie

  3. Yes, Ceci. It's true. We have yet another thing in common, our love for ice cream. Just tell your dad to never snort at you like a pig when you're being comforted by the sweet treat. Because you see, my dad did that to me once(we all know how ornery he is)when I was about 13, and since I was in one of those teenage moods, I proceeded to turn around, go back in the kitchen, and dump my bowl of ice cream down the sink! Lol! Oh, how we emotional females can act, huh?! So now that's kind of an on-going, inside joke we have. Of course, I can laugh about it now;)

    Anyway, you are still such an inspiration to so many people!! I am just amazed at the way you've handled all this. But like you've said (and I'm sure sung)so many times, it's all about the climb!! Love ya, Jena

  4. Just one step at a time and one day at a time. I sure do love you. Thanks for sharing all your thoughts. I can surely relate. Tell Elaine at PCH hello from the Hawkins.