Tuesday, April 25, 2005

[Photo: Mike and Bax at Dondon and Kathleen's wedding in October 2005]

Not a great day today. Radiation therapy took place at noon. It was quicker than I thought. I think they got him at 11:40 am and he was back at the hospital by 1:30. I was there for a couple of hours in the afternoon and he was exhausted and pretty confused. His nurse said that Mike was exhausted all day and didn't have much of an appetite at any meal.

I tried working with him on one of Baxter's wooden puzzles. It's a farm scene and behind puzzle pieces (the barn door, the truck bed, the henhouse) there are animals' pictures. It was not a success. I showed Mike where a couple of animals were, like the cow inside the barn and the 2 pigs behind a bush. I did the animal sounds and talked about what activities they were doing. Then I replaced the puzzle pieces and asked, "Where is the black and white cow?" He sat and sat and just looked, not picking up any puzzle pieces. "Maybe it would help if I made a cow sound," I said, "Moooooo."

He stared at the puzzle, not touching it and not saying anything. "Mike, what are you doing right now?"

"Trying to make a cow sound."
"How about instead of that, you try to find the cow."
More staring.
"You have to pick up pieces and look for the black and white cow under the puzzle pieces."
He picked up a couple of pieces, including the correct one revealing the cow, but said nothing and put it back. "Mike, what are you looking for?"
"Two roosters."

I think it was frustrating for him. I put the damn thing away and Mike looked pretty down. I asked him what was wrong and he said he was sad because he couldn't remember things. I told him that his awareness of not remembering things in and of itself was improvement over the past couple of weeks. He agreed that was a good thing, but his spirits didn't seem lifted. Maybe I should forget the f&*king puzzles. His vision is so bad, it was probably a bad idea.

I'm finding it hard to balance my wanting to be with Mike and having quality time with Baxter. One person who made this easier for me was Lonia (Mike's mom), who reminded me that on days when Mike's not doing really well and it's not a rewarding visit, maybe I should just go. He's in good care and my attention and time could be better used with Baxter... or for myself. Hearing this from Michael's own mother meant a lot and gave me permission to listen to my heart and maximize how I spend my time. My sister has been trying to remind me of it, too. I actually talked to Mike about it today - how it's hard to figure out who to take care of, him or Bax. But I told Mike that when he's really tired and out of it, I feel like he's in good hands with the nurses and there's not much I can do to help him, so being with Bax seems like the right thing to do. He agreed.

Reminder to folks who are going to visit Mike: Nothing that he says can be taken at face value. Today he told Jessie and Roney that he didn't start radiotherapy today, that it was postponed until tomorrow, and that he had yet to eat dinner (it was 7:00 pm). None of these statements was true. If you get there and he tells you something like this and you are concerned, just ask his nurse really sweetly, "Mike said X. I know he's not really reliable, but wanted to check just in case." They're usually pretty good with me about this stuff.

Radiation therapy schedule and visiting Mike:

Radiation therapy is scheduled for noon every day this week. This means Mike will not be in his room from 11:30 until 1:30 pm. Next week, the schedule changes so that it's at 11:20 am each day. This means he'll be gone from his room from about 11 am until around 1 pm. Just want to make sure y'all schedule your visits accordingly. Know that radiation might make him quite fatigued. After you leave, he might not remember that you visited, but I'm convinced that he'll retain the warm fuzzy feeling he got from hearing your voice and just having you in the room.

Finally, an interesting story...

Mike never talked about his brain tumor. Ever. I mean, we joked about it, but I always felt like he was a bit in denial about how serious it was and how it could affect our lives. I was playing out all the worst case scenarios from the start (which may be the only reason I'm somewhat sane as we find ourselves down this dark road). However, something happened the other day that led me to believe that I was wrong. Maybe Mike did get it.

On Monday, I received the Annual Report of the American Brain Tumor Association, addressed to Michael Young. I thought perhaps the neurosurgery office automatically placed Mike's name into a database and maybe he automatically received it. But that would be a HIPPA (privacy) nightmare. Anyway, I didn't think too much of it and started leafing through the booklet, reading about various research grants and educational activities of the organization. Then I turned to the back of the book where they list all of the donors to the organization. And there, under the $100-$250 contribution acknowledgements was one Michael W. Young.

In his own way, maybe he really got it.


Cheryl said...

Egg Foo doesn't start with a "W." What's Mike's middle name???

Diane said...

Hey Danna, Just my opinion, but with people visiting on most days, and some days understandably being better than others for Mikey, it behooves you to take time with Baxter. Much tougher to put into action than to say, but please know your reasoning is wise and sound and loving for both Mike and Baxter.

Many hugs to you from me.

P.S. Where are you getting the neat-o pictures that aren't family pics?

P.S.S. The picture of Bax with his legs through the crib is a scream!!

Beth said...

For whatever it's worth, even though he had a bad day yesterday, when I was there with Jessie and Roney and then later Kevin, he truly seemed to understand and respond to what was being said in the moment. Probably didn't remember any of it a few minutes later, but for example, when I was telling everyone about my new job, he seemed genuinely happy for me and like he "got" it. He had a big smile on his fact and told me it was just really great. He also drank a bunch of water, which is a good thing, right?

Kel said...

It must feel terrible to be there when Mike isn't in top form. I think it must feel like a betrayal to not stay because, after all, that's what a spouse is for--to be around for the bad times as well as the good.

This is just my opinion; if you are feeling frustrated and sad then I'm sure Mike can sense that as much as he can the "good vibes." It doesn't make for a pleasant visit on his part either if you aren't feeling great.
I don't know much about this stuff but I think your feelings of frustration and sadness are normal and human. I see them as a signal that maybe you both need a break to rejuvenate so you can both be together later, better, stronger, faster, and funnier.

You aren't abandoning him you are laying in "supplies" for the long haul.