Week #6 - end of day 2

The decision was made yesterday ... no surgery to replace the feeding tube. Jim is going to tough it out and get through this with the tube as it is. He's been doing well - really diligent about getting his nutrition whether he wants to "eat" or not. (It's tough to force upon him when I know he doesn't want it but we both know its necessary.) We're also trying to be better about taking meds regularly and consistently. He's on at least 7 different meds now. I'm in charge of them and of writing down everything (feeding times & amounts, medicine times & amounts, bowel status, side-effects, deciding when to add other medications, etc.) We're also doing the IV hydration twice a day now. It is extra work but it is also a relief to feel more sure that he's getting the hydration he needs.

It appears that for the remainder of treatment either Jim's mom Jeanette or I will be going with him rather than recruiting drivers (though we still might try out a ride in a Cadillac.) We've reached the point that things are changing quickly and we get new prescriptions, instructions, information, & advice daily. Jim is speaking little so he sometimes needs a translater or someone to ask questions for him and to take notes. Also he gets a bit hazy/confused due to all the meds in his system. I'm trying to keep Jeanette up-to-date on most everything so she can fill in for me as needed. It greatly helps my work situation when I can spend a day here at home.

Yesterday when it was time to leave for the hospital I was scrambling around at the last minute removing seats from the van and making up a "bed" so Jim could lie flat. Something had set him off & he didn't think he could handle the drive, but he managed to do it lying down. However he did sit up for the ride home AND he rode successfully with his mom today. I wouldn't say he was comfortable either time but he seemed to do better than last week.

His chemo "high" wasn't as spectacular last night but it did keep him up much of the night. He was very wakeful and about as talkative as he can get these days.

It is getting very difficult for Jim to swallow but he's valiantly continuing to sip on a water bottle as often as he can. The skin on his neck is burned red, breaking down, and terribly painful. Yesterday we switched from applying a special radiation cream to using sheets of a "foam" that is similar to craft foam sheets with a sticky side. You peel off the backing and apply the foam to the burned area. Of course as the nurse said "this doesn't work very well in the neck area because it won't stay on". Today Jim apparently told the nurse that I'm good with things like that so he brought me the stuff to cut & apply. I did some creative scissoring and am now hoping it will stay on till tomorrow.

I am encouraged that he still occasionally tries out his sense of humor. Like yesterday in the chemo room when he stuck his fingers in his ears and made faces at the nurse & I. Strangely enough, these days this sort of thing is quite comforting to me. :)

Next week they expect Jim's white blood cell count to decrease, so he'll be getting a shot of something to improve that and to get him through the following week.

As usual, we SURE appreciate your prayers!