Choices and Control
The past week has been filled with my dad, seeing many friends during dinner dates, seeing my cousin on Monday, driving back and forth between Albany & Eugene, text messaging family, trying hard to figure out edible food for Mr Picky-Eater and not touching anything related to my art. Evenings have been recharge time and mornings I’m up and out the door running in one direction or another. Lee hasn’t been doing well with increasing weight or ability to overcome his discomfort. Part of the problem stems from his refusal to drink more fluids to remain hydrated. Another part is his lack of appetite. The final part is his ongoing anemia. We wonder if some of his refusal is part of a control issue. He lives in a world where everyone is telling him what to do, when to eat, what to drink, what pills to take. My mother went through this same thing during the last 4 months of her life. We all bent over backwards trying to help in any way we could. He has total food & beverage choice. He wanted Borscht soup on Friday, so I made it (and it turned out quite well if I do say so myself!). Whatever he wants, we’ll do it. Keeping his basic medications going has also been a struggle. He doesn’t believe in taking pills for pain. It was hard to get pain relief into his system two years ago during the vertebrae breaks. He doesn’t refuse it all together, but he won’t take it on his own.
Nuts and bolts of the week: Thursday afternoon was spent at the oncologist. His weight was down by .5 lb (and I couldn’t extract the heavy tape measure or change out of his pocket before he stepped on the scale); White blood cells in normal range (4), Red blood cells down to 8.4 (last week it was 9.3), temp normal, blood pressure 110/48. The doctor feels the white blood cells are crowding out production of the reds and chemo needs to start again. Lee dreads starting chemo again, but how can he get around that? I’ve started asking him flat out if this is what he wants: Do you want to continue living? Do you want to work towards getting back to living life or not? Getting back to the projects he has waiting in the workshop, taking the trip to eastern Oregon, getting back to the coast and away from Kim & I? His reply has been yes, he does want to keep on living. He has a support crew rallying around him, help with food & daily things, but he needs to start fighting for what he wants.Where is our Captain Dart (a nick name he had at home and probably work 20 years ago)? He’s verbalized his choice so now he has to work towards the goal. I think it’s high time to pull out the “brown rat dropping” pills (aka medical marijuana) to help increase the desire for food. I just hope they actually have some effect.
Since the chemo med Velcaid wasn’t in stock at the oncologist, treatment has been delayed until Tuesday. They will also administer a dose of Zometta for bone health. I suspect it will all be delayed due to need for a blood transfusion before Wednesday.