Monday, September 12

Time, in boxes!

I remember when I was first sick (soooo many years ago now) that I had a hard time telling the difference between days of the week. Between chemo working three to five days a week back then, and then sometimes not sleeping at night, and then sleeping during the day, and now with week long chemos and those offset from other times. It gets rather confusing not having the "anchors" in my life of work Monday through Friday, nine to five (or there-abouts) so my sense of time kind of slipped away from me. Some days are better than others right now. I can usually get some idea of what day of the week it is, but it can still be slippery. I can see why humanity has been putting together the notion of clocks and calendars for so many years.

Just recently (see the last few blog posts) I have been talking about my time, how I use it, etc. Mainly to be more purposeful about what I do with my time even though my health wanders all over the place.

In light of this I have created a little chart to help me keep in mind some of the things I want to do, and the fact that I have the time to do them. A brief note about this image: it is VERY flexible. Also with disability I am only really allowed to work two hours a day total so the "work" time you see on here is more like, "When I get up" or "as I pace myself in the morning". I don't want anyone to see this chart and think I am working that much, I'm not. I am working well within the confines of disability. Aside from the legality of posting that, I thought this would detail some of the other things I am looking to do with my time. As I said earlier, you might or might not see the fruits of some of that work.

One immediate case, (and it isn't on the chart) is that I am trying to sell my Xbox 360 so I can buy a guitar and get back into the making of music. If you know someone interested in an Xbox 360 (Christmas is coming...) I have a good deal for you. (I won't be listing this on Craiglist or anything like that so the price will based off the fact that I will probably know you and you know me. I have no problem shipping it.)

In the medical arena I have been getting Neumega shots all weekend, and, well, frankly, they are maybe worse than chemo. (I'm trying to decide which I would prefer to get... and it's a hard choice) My first shot was on Thursday and I got my first headache that night. It didn't really abate until light night (Sunday) when I took a full dose of Tylenol (I normally take half for my head), and an extra dose of another type of pain killer for my body, and woke up this morning free of the headache. Though it still feels like I have the flu. Platelets this morning were only up to 77 and they need to be at 100 to start chemo, and with our vacation coming up at the end of the month I'm not entirely sure I can make it. However they want to stretch it and try a shot today and tomorrow and see if they can't get above 100 on Wednesday to start then. At this point I figure what's the harm. I've already gone through the pain of these things, if I can get chemo in, then ok. Otherwise, it wasn't going to happen anyway.

Of course the downside here is that I am still clueless as to what my life like look like after Wednesday. Chemo, or not!? But generally these things go up at a pretty predictable rate, jumping almost 25 points in two days would be... pretty impressive. (Due to previous numbers) We shall see. I am here in Houston to be available to medical technology, I put myself in God's hands as He has obviously lead us here. Let us see what happens. I have to trust He knows what's going on... because, well, does it look like anyone else does?!

[ Prayer request? ]


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