Up Again in the Middle of the Night

I had to get up at 3 to test and shoot Ennis. We have gotten way off schedule and I'm trying to adjust back. He was a respectible 108 at +13.

Today was another busy day trying to get Jim arranged for next week's new schedule. He will get a Hospice Aide (Kira) every week day starting at 7am. She will help him clean up, make the bed, tidy the room, get him breakfast, set his meds in front of him, and clean the breakfast dishes.

Monday--Liza will take him to the dermatologist for his UV treatment. It already is working to reduce the itchiness of his excema. He will make his own lunch when he returns.

Tuesday--Adult Day Program from 9 to 3. The Paratransit bus is schduled to pick him up here at 8am. I will ride down with him the first time and bring a cab home. The bus will bring him home. He will take his food and fluids with him each time he goes, which I will set up the night before.

Wednesday--Another UV treatment, but Liza isn't available. I will drive him. He also will get a blood draw, which I will explain below. Again, he will make his own lunch.

Thursday--Adult Day program 9-3 by Paratransit.

Friday--Liza will drive him to the UV treatment and drop him at the Adult Day program. He will come home by bus at 4pm.

Jim thinks that on some Mondays and Wednesdays, Liza can drop him at his drinking club, and he can find someone to drive him home,

Jim had a blood draw yesterday, and the GI's office said that although his kidney values are improved, they still are bad. Their initial thought was to continue to withhold diuretics, until they found out that his ascites (fluid on the belly) is increasing. So he gets one-half dose of one of his diuretics. They wanted a repeat blood test on Tuesday, but I said we couldn't do that on his first day at the Adult Day Program. They agreed to a Wednesday blood draw, unless there is some way the Adult Day program can pull blood on Tuesday. God, I hope this diuretic doesn't set Jim back.

Today (Saturday) I am meeting again with the Hospice Social Worker in the afternoon. She wantd to see both of us, but I don't think a 3-way conversation is anything but hurtful at this time. Jim and I are struggling with "control" issues, and the social worker and the Chaplain last week seemed intent in picking at those sores. I think one-on-one is the type of help we need. While she is here, I have arranged for one of Jim's friends, Bill, to take him down to his drinking club. Jim will, of course, not have alcohol there; and he will have to limit his cranberry juice to 2 glasses. I have spoken to the bar manager about not serving him alcohol.

With this new schedule, I am planning to start back to work on Monday.

The morning aide is a hoot. She's a tall, tough, beautiful black woman who also is an EMT with a Pennsylvania firehouse. But she doesn't cook. I had to show her this morning how to make hot tea. This is true; I'm not exaggerating. She also was, with instruction, able to put together a bowl of cereal with a sliced banana and a bowl of mixed fruit. Lord help us when I ask her to make toast! Jim knows that on M/W/F that if he wants eggs and fried potatoes, he will have to cook them himself. There would be no time for that on T/Th because of the early bus pick-up.

We'll get this schedule down to a science, provided Jim does not balk at the Day Care facility. He plans to take a book and read for much of the day. And on Fridays, some of the guys there, including staff, have a 2 hour poker game.

Oh, and what about me? I've been sitting here with a hot flash for the last hour. My right "breast" really hurts; I just took a percocet. PT Bruiser thinks it is late onset radiation burn, but I'm no so sure. I think it's irritation from the expander implant. I will see the reconstructive surgeon next week to make sure that whatever it is won't be a problem for the final surgery. I want these expander implants out SO BADLY!!

My thoughts this week have been alot with some of the folks on the FDMB. Kris has decided not to get radiation for sweet Janie, and chemo is not an option with this cancer. Robin and Julie continue to grieve deeply over their losses of Peri and Smokey. Alice's 3 YO civie Sebastian has a urinary blockage.

It turned out that yesterday was the one-year anniversary of my announement on the FDMB of having breast cancer. I went back and read the resonses. What an absolutely wonderful group of very supportive people. Thank you Maxie, for taking me to that place. It is magic.