God is love.
Living With Malignant Paraganglioma Pheochromocytoma SDHB Mutation and the Search for Treatment
Wednesday, April 22, 2009
Another day
Today is doctor's appointment day. The throat surgeon anyway. Yesterday was the oncologist. He's a little worried I think, because he hugged me before I left. He's never been like that before. My blood pressure has been creeping up and down, and that's a marker for the tumors being active. We did labs to check my chemical levels so I should have some results by Friday. In the meantime, I hate not having a plan. I don't like sitting here wondering when the next surgery is, what kind of surgery it will be, which doctors will be in on it. I need dates, times, names. It's hard to stay upbeat with all the tubes and no eating and barely drinking and everyone says "don't be down." That helps. Not really. I count the minutes each day, and I hate saying that. This time it seems to be dragging on and I can't seem to get out of this rut. I pray every night asking God to help everyone I know, hoping I'll get points for not asking for selfish things, and it's so hard to concentrate on prayer now, so I get frustrated, when it should be the most calming time of my day. So hopefully, after my doctor's appointment, I'll have some kind of plan to count on, new things to pray for, some sort of end in site. Tomorrow there will be a light at the end of the tunnel. I hope.
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Sandra came to KDG today. We talked about coming and seeing you soon. A quick drive down over a weekend. We'd get a hotel. We want to hug you. I'll send you an e-mail.
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