Week #5 - Cathy speaks

Here we sit in the chemo room. We are here each day this week to receive fluids via IV (in addition to Jim's regular daily radiation treatments) because there was worry that he wasn't getting enough hydration. It seems that I may be in charge of doing this at home next week. (Thank heaven no needles involved, they'd just leave an IV in. Otherwise I'm afraid he'd be better off on his own as I'd be passed out on the floor!)

I feel better knowing that he's getting these fluids and I do think it is helping him - but there's still other issues. The stomach tube is still causing what seems to be significant pain when he is upright (sitting or standing). We are going to see a surgeon as soon as it can be scheduled - to look into the possibility of having the tube replaced. This time they would do it laproscopically so that the doctor could see Jim's insides and place the tube in a more ideal spot. It would include an overnight stay at the hospital as it will be a true surgery (vs the outpatient form he did last time.) Jim is very reluctant to go through another surgery; he looks back on the recovery time from when the current tube was placed and he does not want to go through that again. His doctor is very concerned about him attempting to continue as is for another 7 weeks or so. There's enough pain from the radiation that he doesn't need to also deal with a stomach tube issue on top of that. At this point the tube issue is worse than the radiation pain (which is supposed to be significant.)

Due to tube pain he spends most of his day lying down. We moved a recliner into the bedroom so he can switch between that and the bed as he wishes. He's also hanging out in the bedroom because the humidifier is there and because it is more quiet than the rest of the house. Life's going on around him and I'm afraid it gets noisy despite our efforts to be quiet.

How does he look? About the same except with what looks like a sunburn on his neck. His skin there is becoming quite uncomfortable so he puts special cream on it. He shaved on Sunday but I am pretty sure that's the last he'll shave his neck area for some time.

Monday evening he had the usual chemo "high" from the happy cocktail they pump into him. It's nice to see him so active. Sean commented that Dad is pretty funny on Monday nights after chemo. This Monday night it was 11pm and I was nodding off. But Jim felt it was a great time to discuss all kinds of things. I tried to stay awake but I did a lousy job of hiding my efforts. In the end I went to bed and he stayed up.

Unfortunately today he's much different. He's had stomach issues (either pain or nausea or both?) since waking this morning. He's been moving & reacting very slowly and had a heck of a time getting out of the recliner in chemo to come down here to radiation. (Yes, we have moved since I started writing.) They gave him anti-nausea meds and doubled-up on the anti-anxiety drug (which also happens to be an anti-nausea drug) and we gave him additional pain meds but he's still feeling lousy. I think it worsened when he started the formula feeding about an hour ago so we shut that off, which worries me because it means he's had hardly any nutrition yet today and it is 2:30pm.

I know this experience is nothing for me compared to what it is for him. I will say, however, that it is very emotional and tiring for the caregiver. It's tough not knowing what to do to help him and knowing that even if I do all I can it won't be enough to make him comfortable nor can I do anything to take this from him. The boys are trying too; they've even had several fights about things like who would get to help Jim or they yell at each other for being too loud.

Radiation ought to be finished soon, so I'd best get this posted. I'm sure Jim will comment and/or correct me as he wishes. Actually I hope he DOES because that means he's feeling well enough to do so.