Val called and said the soccer tournament was canceled so they were going back to Houston early.
They went to the Alamo then met us at the Farmers Market. It was SO wonderful to see them. Poor Bella will not be happy when she gets home. Courtney, her rabbit, died yesterday despite an $800 vet bill a few months ago.
They are going to Sea World in July and I may go with them if I can.
Val offered to write me a letter to BC/BS. I wonder if a letter from the head of orthopedic oncology at one of the biggest cancer hospitals would get notice? Might be worth a try.
She is also going to send me info on a super light scooter one of her patients just got. She is doing a bunch of work related travel this summer and I offered for the girls to come stay if possible. I miss them so much.
Found out more of my limitations today. We parked across the street at Goodwill and I could barely walk to the market. Had to sit even though I turned my oxy all the way up. I am so frustrated and starting to think about gathering the family for what might be a last visit.
Wondering if I need to do lots of letters to the grandkids. How the hell do you die slowly???This truly sucks. Personal pity party time.
Sunday, May 26, 2013
Saturday, May 25, 2013
Brandy is here with Meg!
Yeah, Brandy came in today with Miss Meg. I didn't think I could get to the airport. Hundreds of road closures due to wicked storms all night and half the morning. Two people died in high water crossings.
Went shopping at Target.
Been a rough couple of months. I gave notice in the end of March then worked another four weeks waiting for the new nanny I found them to start. Long story there which I will add later.
Been off four weeks now and it has been a hard adjustment. My body is winding down too much, too fast.
Saw Marks last Wed. and he apologized that there really is nothing else for us to try. We talked a little about how band surgery really wouldn't help since I have almost no appetite at all. Asked if I can do damage by cutting down to 600 to 800 calories a day. He said no because my only hope to stay alive is a lung transplant and I can't even see the transplant team unless I lose 100 lbs. We joked about lipo-ing it off.
Talked about not doing a mamo or more heart testing this year because it would probably be a waste of $. Not said in those words but understood that way.
Putting off lung tests for three months because it won't help anything.
The physical therapists keep asking if I'm having any signs of depression. Same answer every time; I'm not depressed. I'm pissed. I want to live and it makes me crazy that there is nothing I can do.
Went shopping at Target.
Been a rough couple of months. I gave notice in the end of March then worked another four weeks waiting for the new nanny I found them to start. Long story there which I will add later.
Been off four weeks now and it has been a hard adjustment. My body is winding down too much, too fast.
Saw Marks last Wed. and he apologized that there really is nothing else for us to try. We talked a little about how band surgery really wouldn't help since I have almost no appetite at all. Asked if I can do damage by cutting down to 600 to 800 calories a day. He said no because my only hope to stay alive is a lung transplant and I can't even see the transplant team unless I lose 100 lbs. We joked about lipo-ing it off.
Talked about not doing a mamo or more heart testing this year because it would probably be a waste of $. Not said in those words but understood that way.
Putting off lung tests for three months because it won't help anything.
The physical therapists keep asking if I'm having any signs of depression. Same answer every time; I'm not depressed. I'm pissed. I want to live and it makes me crazy that there is nothing I can do.
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