Two weeks until Day 100... A significant milestone I guess, but primarily I'm excited because I think they'll remove my central line. I want to be able to shower like a normal person (you don't want to know how long it's been since I've washed my hair, albeit there isn't much to wash).
Last night and tonight I've had terrible insomnia, even after taking my Ambien and Ativan. I was up until 0600 or 0700 this morning, and now it's 0154 and I'm still wide awake.
I saw a PA today in clinic. My counts are up a little, something like:
Hemoglobin 11.1
Platelets 77
WBC 3.7
|Neutrophils| 1.8
Creatinine 1.38
My mass is down to 83kg (~180#). It's definitely noticeable in my legs, they don't look very sausage-y anymore except around my ankles and feet, exactly where the neuropathy pain is. I haven't been wearing my compression stockings much and even at night I don't seem to be retaining much water in the upper parts of my legs or body. I'm still on the diuretic, so I just need to keep hydrated as the last of the extra fluid comes off.
My neuropathy pain is still constant and severe. I've found that one of the painkillers I have left over from my lung surgery (I pop two 500mg acetaminophen/5mg Vicodin hybrids) will take the edge off the pain and make walking easier for about 4-5 hours. I talked it over with the PA today and she was fine with me taking it. She also doubled my dose of Gabapentin and prescribed a Gabapentin gel to rub into my feet. I hope it brings some more thorough relief. Even with the partially effective painkiller my feet are still miserable. It wears off so fast and doesn't help me at times like when I sleep. If I have to get up during the night to use the bathroom, for example, walking is so impossibly painful I crawl to to the toilet and back on my hands and knees. Trying to walk brings such excruciating pain my legs will give out and I usually fall to the floor, which is how I got the brilliant idea to crawl in the first place. Strokes of genius come in such strange packages sometimes...
On the plus side (I guess) I took a pair of crutches from my parents' house while I was home this weekend, so if I have to go mobile for an extended period of time it is a little easier. I should say faster, not easier. I can shuffle much more quickly on the crutches than if I just walk freestyle. I also received a handicapped parking tag for my car (woo close parking!). I refuse to let this pain keep me from living my normal routine (ie grocery shopping). I'm glad I have at least a few options - painkillers, crutches, disabled parking - that make it possible, even if still painful, to do what I need to do to stay independent.
Plus now, with a disabled tag, I can park at meters and don't have to put in quarters!
My next appointment is Friday. The PA was concerned that my creatinine was up a little (I think it's the diuretic's fault, since there's such little excess fluid left. That's why I need to watch my hydration and keep my kidneys happy). My blood pressure has also been elevated since I stopped the amlodipine. If it is still up on Friday they plan to add another anti-hypertensive. I thought she should have done it today, but the PA insisted we wait. So I guess we will wait.
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