Tuesday, May 25, 2010

Not Representative

So, I'm reading my blog and I'm wondering what I'm doing writing this stuff. I am just not getting the real picture out. My breasts are peeling. My eyes are so dry they hurt. My toes are starting to curl over because I've been in bed so long instead of standing up. Joe's daughter Becky sent a photo of our family taken about a year ago and I put it on the wall and it is the most painful reminder in this room that life is not as it was. My blood pressure 90/64 most of the day. Physical therapy comes and I stand up -- my heart rate is 123. We start walking and fortunately, the rate goes down to about 110. I'm tired. I'm scared. The pain was so great in my throat due to mucositis that I quit swallowing three days ago and tethered myself to suction. Yesterday, after three days of nutrition in a bag IV, I was afraid to eat because it meant that I would have to swallow and I didn't want to feel that pain again. A couple of weeks ago, I read more of the fine print. Before the 100 days is over I will be scheduled for 6, count them 6, more lumbar punctures -- spinal taps of cranial spinal fluid with injection of chemo into fluid before the needle is removed. Six more of these procedures that I hate. So, why do we have to do this? Because all this bone marrow transplant stuff is taking care of the blood making in the bones and the blood/brain barrier means that the leukemia can still have a field day in the spinal fluid on a totally different track from anything we have done with the rest of my body. "ALL has a high risk of showing up in the spinal fluid," says one nurse. "Google it." I haven't, I won't. Just can't take any more of that information is power stuff right now. What I know is that I have endured about 6 of the Intrathecal methotrexate during induction and consolidation back in Green Bay and two Intrathecal methotrexate at the Seattle Cancer Care Alliance before entering the hospital for transplant. All fluid, each test has been clear. No leukemia. Let us stay on this horse. So, I'm writing and trying to hear myself and what I am hearing is that nothing appreciable has changed except that I am worn down and out and what I need is renewal. My prayer: I'm too close to the bone right now and right here. I need some margin. I need a recharge so that I can face the next wave. I am getting curious about how God is going to fill me up so I can face the next take down.

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