Radiation and Chemo start Thursday

We had a lot of activity today, a lot of calls, and a visit from the Home Healthcare Aid.  We learned that the first radiation treatment will be at 4:00 Thursday, so chemo will start then, too.

Mom seemed to have a good day, although we're seeing her get "stuck" - just sitting immobile, although she says she wants to do something and wants to go somewhere, but then she doesn't, she just stays there.  I tried offering my arm as we were getting ready to go to dinner, but she just stayed.  Finally she said she was annoyed with Dad, tired of him being on her all the time to do something, with everyone "picking, poking, prodding" her, telling her what to do like she can't know herself.  She wants to be an adult with her own life, her own will and decide on her own when she wants to do things.  I pointed out that if it weren't Dad doing the prodding, it would be strangers at Autumn, and she didn't like that either.  Someone has to help care for her and get her through her routine.  I explained that I think the tumors are seeming to cause her to get "stuck", so that although she thinks she wants to act, she doesn't, and maybe we could help her with that.  I agreed with her that we want her to be independent, too, that no one is trying to take that away from her - far from it.  But we don't always know the best way to help and she's going to have to tell us.  Also, that the tumors are going to maybe play tricks on her so that she may think things that are not real or true, and she's going to have to learn to trust us and rely on us to help her see what's true.  She said she's tired of Daddy being angry all the time.  I said he's mad at the world right now and is having a lot of his own pain watching her be sick, and rather than be sad, because sad is not comfortable for him, he's just mad.

I don't know if any of that made sense, then, or now in the repeating.  We're just groping our way here.  I'm glad she opened up a bit and said what's bugging her, that something is bugging her.  Later when I caught myself asking if I could help her with something, I just stopped myself and said, "OK, I'm not going to ask that any more.  You're going to have to tell us when you do and don't want help."

And...like another time back at Autumn, right when she was feeling her oats just a little and declaring some independence, she had a set-back.

We did finally go to dinner at a new little Amish place in Quaker City.  It was a very good dinner - we all had the special, chicken and dumplings, and pie.  She seemed quite well at dinner and ate a lot and Dad was really pleased to have her show some appetite.  Then, when she went to the restroom afterwards, she got icy-cold and shaking, then got in the car and threw up all of her dinner.  [Please don't mention this to her!]  She also seemed a little disoriented for a bit, but quickly seemed to get back to normal, other than the mess.  We got her home and settled for bed easily and she went quickly with no further resistance.

This damn disease is maddening!  I know that Dad, like me, is watching her very carefully for any next sign of decline, and any small sign shoots right through him, physically, like a personal threat, like it does to me.  He and I both stayed very calm during the small crisis, but both worried afterwards that this may be a sign of trouble to come.  Will she keep throwing up now?  How can she hold down chemo?  How do we clean up chemo-barf, when we're not even supposed to touch the medication capsule?  How is Dad ever going to get her to radiation on time if she keeps getting "stuck" and sits even though she says she's going and appears to be trying to be compliant?  She doesn't want to bring Evinrude any more, but where do we put her if she goes out while walking somewhere?  With Evinrude we'd have a chance of getting her set down before she fell down.  It's a struggle between supporting her "person-hood" and independence and needing to plan for contingencies and what-ifs and worst-case scenarios.  Sometimes it seems we'd have to restrain her and force her compliance to get her through the chemo and radiation routine.  Even though she says she wants to do it, she doesn't seem capable of either carrying it out herself or complying with it.  It is maddening and very frustrating for all of us.

I'm feeling very negative about a positive outcome with this chemo and radiation routine that's coming.  As much as I need to go home to Tucson, it's going to hurt not to be here, too.