Saturday, April 29, 2006

[Photo at left: Mike's hospital room this afternoon - filled with folks. At right: Did Mike let the cat out of the bag that Bob has a "friend" named Wendy? Look out Miss Wah.]

Note: Please read the comments posted in response to this entry for some helpful observations from Anne and my response regarding how to best interact with Mike. If you're nervous about seeing him, visiting with another friend is a nice way to diffuse the situation, too. Even I appreciate not being alone with Mike all day, but having someone else there to help ease the interaction. It's quite a natural feeling.

Today Mike had a really good day.
No - no short-term memory still. Yes, still hallucinating and talking nonsense from time to time. But he was alert, had a great appetite (even requesting cheese fries in the afternoon), up in the chair from 12-2 pm, joking around, tapping his feet to music, and enjoying the warm and friendly company of the many loving friends who visited him today. Sodium’s normal (137), temperature is normal (though poor Mike was shivering most of the day. Getz’s theory: he’s so used to having a fever that 98.6 is chilly for him. Seems logical to me.)

The day was a constant stream of visitors, from Karen Getz in the morning, followed by Dritsas (or, as my sister calls him, Dr. Itsas), then me, Tracie and Bob, Tom-tom, Betsy, Kathy C. from Discmakers. Kevin and Beth, and Jenny S.G. from old Annenberg days. We all cleared out around 4:15 pm to let him rest, and a couple hours later, Anne L. joined him for a dinner date. What a great vibe in the room today. Lots of laughs and love.

I decided to post the week’s visiting schedule up on the bulletin board in his room – a nice reminder to the nurses/docs/techs caring for him that there are a lot of people who will be in and out checking to be sure than Mike is well cared for. It also provides a clear picture of how great of a person Mike is – given the huge number of people looking in on him from day to day.

It’s funny how people have been so concerned that Mike needs to have the best neurosurgeons around (which he does) and yet, Evans and Andrews only affect Mike’s life when he has procedures or complications. The rest of the time, Mike’s quality of life is completely (or mostly) dependent upon the care of nurses and techs who bathe, feed, move, and dress him. So, be good to them. Be kind. Be appreciative and deferential. Show them the love. Unless, of course, it’s Vince or some other bum nurse – then punch them in the nads (how do you spell nads, anyway?).

Today’s nurse, Denise, was really sweet and will be with Mike again tomorrow. She thought Getz was Mike’s wife… but that’s ok. She was thoughtful enough in the afternoon to tell me as I was chatting with Jenny in the hallway (and a crowd of folks was in Mikes’ room) that she feared Mike was getting sleepy and might need a break from all the action. I appreciated that as it indicated that she really was looking out for what was best for Mike. The two techs working with Mike today were charming and funny (one of them helped get me the # for the nurse supervisor to tattle on Vince on Friday). Also, one of them – very pretty young woman - had seen Josh (introduced to them as Mike’s son by Vince the f*&king genius) and told me she though Josh was b.e.a.u.t.i.f.u.l. Then she asked if Josh dated black girls – at which point, “sleeping” Mike’s eyes opened wide and he laughed.

Some fantastic person placed a notebook in Mike’s room to serve as a visitor’s log. It’s a great place to write down general impressions and stuff you may have chatted with Mike about over a meal. And Kel and Di left two huge solid chocolate aspirin for me. I took a huge bite and it got me through the day.

Couple of funny Mike-isms from today.

First of all, in an awesome moment, when Tracie and Bob came in, I congratulated them and then Mike did the same. “What are you congratulating them for, Mike?” I asked.

“The engagement!”

Given that they got engaged about 2 weeks ago, this is either a fantastic moment of lucky guessing – or he actually was able to store that piece of information – which would be remarkable.

As Bob and Tracie were on their way out the door, Mike asked Bob if he had any new stories from “Wendy.”
“Who’s Wendy?” I asked on Bob’s behalf. Mike responded with some random stuff…then said clearly,
“You’re going to be receiving some emails from wendy7@aol.com.” Then, to Bob, “She is very complementary of your style.”

While Drits was there after lunch, I played some Dianne Reeves on iTunes. Mike was grooving to “Straighten up and fly right,” doing some hip hand gestures, and smooth dance moves as he mouthed all the lyrics. He was definitely performing just for us.

It’s interesting to note how folks react to their experience visiting Mike. Some folks are devastated by it and others are happily surprised at how well he’s doing. Tracie and I were joking that he was Mike, but with a little glitch or something. “Mike 2.0,” Tracie said… to which I added “or Mike DOS.” But then talking with Betsy on her way out the door, I thought differently of it. She thought Mike was really great and that the 2.0/DOS analogy didn’t fit at all. It's fair to say that the core elements of his personality are the same: low-key, positive, content, always joking, always making the funny. So, I suppose that when it comes to those subtle elements that comprise a person’s identity – or soul – or whatever… Mike is there. It’s the more primitive functions that his body is having trouble with.


Anne Ladenson said...

I'm so glad to hear about the exciting afternoon you guys had! I guess you got my message about how well Mike was doing at dinner, totally alert and looking at me. Some things I kind of doubted, like when I told him I liked his haircut and he told me he did it himself (?). When dinner came, he dug right into his peas and some thick veggie soup, a bit messily but with great enthusiasm, and I wasn't sure how much to help. I felt incredibly awkward. But for those of you who haven't yet visited with Mike during dinner, you get over it, and I know I won't feel that way next time. The most challenging part was that in addition to the hospital dinner, Danna had left this huge messy burrito (thanks Danna) and I wasn't sure how to approach that. I ended up trying to cut in half and gave him half wrapped up to bite himself. But instead of eating it, he put in under his tray, kind of hiding it in the blankets. I asked him why he put it there and he said because that's where he was keeping food he wasn't ready to eat. So I let him keep it there a minute, and then I decided to go ahead and move it back up on the tray, telling him I didn't want to get his nice blanket dirty, and he accepted that. He drained his Chocolate Boost. He must love that stuff. A few minutes later I tried it again and he still wanted to put it back there, so I ended up just spoon-feeding him a couple bites of it, and then moving back to the hospital food.

After dinner, we played with some toys. Whoever brought that rubbery blue creature - that is the best!!! He correctly identified the tune his snake plays ("If you're happy and you know it....") We talked about some Disc Makers business and when I mentioned a particular issue of ongoing concern, he told me, "I still feel that way." It really felt like Mike. Unlike earlier in the day, our time together was not all that funny, but maybe that's more of a reflection on the fact that *I'm* not that funny, so Mike was just picking up on my vibe. After a while, I read to him from the book I'm reading by the founder of the Suzuki method of teaching children music. It's called "Nurtured by Love." There's a lot about how people learn and I think we were both enjoying it and thinking abou how it applied to him. Eventually, he fell into a deep sleep, breathing heavily, but I kept reading a bit longer. I wonder if he'll remember it at all.

After the nurses changed shift, and the very nice Denise went off duty, an equally pleasant-seeming woman named Seta came on for the evening. Mike was able to tell her that his son's name was Baxter, but he did guess that it was 1995.

I'm looking forward to seeing him again on Wednesday and feeling more confident in my meal-helping ability.

Big hugs to you Danna and all Mike's wonderful friends.

Dritsas said...

The Diana Reeves bit was brilliant!! Even in as bad shape as he is in, the man is still one of the most funny and committed performers I know. God bless him. Danna and I had a good laugh and he was totally playing it up for his "audience."

Interesting about the burrito in the blankets. After lunch he kept digging in his blankets. When I asked him what he was lookin for, he said there was a salad in there (he didn't have a salad with lunch). Is there a squirrel in Mike's past we don't know about that taught him this trick?

The nurse Denise seems good. She is nice and seemed on top of things. When I asked about maybe putting him back into bed, she knew how long he had been out and said that he should sit a while longer. She was keeping good tabs on him.

Anne Ladenson said...

He also asked me about a salad. I forgot about that. I told him we did'nt have any salad. Specifically mentioned iceberg lettuce, believe it or not. Maybe he's craving veggies, he was really into those hospital peas last night...

csm said...

Craig and I ran into Nurse Denise last nite when we were walking back to our car at the hospital garage. She had just gotten done with her shift and was waiting for a ride. She was very complimentary about Danna and was very grateful for all of the friends and loved ones that Mike had. She said it makes a HUGE difference to have a calendar of when folks come in-- and was amazed that we had come up with one that people could access online. She suggested that other folks with loved ones in the hospital should use one just like it. She definitely impressed upon us the value of having visitors-- not just for Mike-- but for Danna... as it provides her with relief and confidence that Mike is in good hands when she can't be there... A very, very sweet woman... she is genuine in her concern, for sure.

While we were visiting earlier in the afternoon, he seemed to really like playing with that blue and white geometric snake thing. Twisted it in all different directions... I asked him if he follwed football and all-- and when he said yes, i told him that Sat. was the day of the NFL draft. He seemed to know what that was. Does he like football? (I admit, after all the years of knowing Michael, I never knew he was into sports as much as he is. Could be that I never asked him about it since I'm not 100% into sports)...

Got a great chance to chat with your sister we we stopped by to visit her and Bax. They were having fun, for sure. (Poor Bax and his allergies! Such a runny nose!). She had some wonderful and insightful things to say about you too, Danna... and she helped me realize the importance that this blog plays for you and your need to clear out the activities, events and sentiments of the day. for that reason ALONE, I am sooo glad that I figured out how to set it up.

Hope to visit with Mike on Monday or Tuesday... and definitely Thursday night for our dinner date. I plan to find some fun things to read to him.

The Brain said...

Once again, I need to say how great you guys are. We are so lucky. As a friend of mine said, it's like a best case scenario within a worse case scenario.

I also wanted to take a second to thank Anne for her very honest post regarding last night's visit and to make a couple of comments. First of all, sorry for the messy burrito!

Second, I think it is very helpful, Anne, for people to hear that even you, who has known Mike for so long and knows him so well, felt awkward at your visit. It's very odd seeing Mike not in control of his own world, given the person he really is inside. That being said, I have found that Mike does not feel awkward at all - and that helps me to feel ok redirecting him, or helping feed him etc.

Also, he is very suggestible when it comes to cues of intonation - meaning, if you say in a happy tone, "Mike, how about we x?" he'll say yes. If you say, "You don't want to Y, do you?" He'll likely say no. This also means that if you are confident or use humor when making suggestions, it works quite well. It sounds like this is exactly what you did with the burrito in the blankets issue, anne.

I tend to be really positive and honest with mike and say things like, "You know, I think sometimes your vision problem tricks you into seeing things that aren't there. Like now, it's making you believe that there's a drawer down there, but there's not. I'll take this food for now and you let me know when you want it again, ok?" Sometimes he'll say, "So... there's no drawer here?" And I'll say, "Nope." And he'll say in a joking way, "Huh. Alrighty then. Interesting."

When he's tired and starts hallucinating or saying things that clearly don't make sense, I'll simply smile and say, "Mike, I think you're getting really tired and you're already dreaming even though your eyes are open." He'll usually agree that I'm probably right.

It's all about being confident. He reads tone really well, and if we treat him like he's not a crazy guy, he won't feel like a crazy guy. A couple of times he's mentioned something about him being crazy or in a mental institution and I always correct him. "No. You have a brain tumor that is pressing into certain parts of your brain. You're not crazy. You're a pain in my ass, but you're not crazy." He always smiles. (Insult is good. It makes him feel like we're treating him like we always have.)

Peter said...

That's really interesting. Helping Mike by giving him some externally-imposed reality checks when warranted seems important, since he obviously listens to and makes use of those observations. I hadn't been doing that, but will.

Don said...

The most amazing news of the day: Josh was found b.e.a.u.t.i.f.u.l. I always found Josh handsome in a "yeah I guess he's handsome" kinda way but b.e.a.u.t.i.f.u.l.? Maybe I need to look closer. (That's two women this week Jorb!)

Looking forward to my date with Mike on Tuesday. If he plays his cards right I may give him a goodnight kiss.

Don said...

OK, a serious question: my wife, Kathleen would like to visit Mike. However, she's 6 months pregnant. She's a nursing student and has consulted a number of people but can't seem to get a definitive answer as to whether it's OK to visit Mike with his radiation therapy going on. Does anyone have any experience with this?


The Brain said...

That's a good question, Dondon. My hunch is that it would be ok, but I'll ask the doctors. Mike doesn't have any continuous radiation emitting from a chip or anything - which is one form of treatment. Instead, he goes for treatments each day. I'll find out for sure, though.

Anonymous said...

Saturday 3:00 was my first visit with Mike in the hospital. I was happy to meet such a great group of friends gathered there and to find that the overall feeling in the room was relaxed and lighthearted. Mike felt it too -- he joked and smiled quite a bit. Danna said this was a good day. The room was crowded and busy but Mike did not seem overwhelmed. He was confused by some of the items on the tray in front of him and preferred to have something in his hands. He recognized friends voices and followed parts of the conversation. Which has got to be tough to follow when you can't see faces or what is going on. He even made several smart-aleck remarks like when Danna asked if she could get him anything he replied "half of that burrito you're eating" (which she was) and when it took a while to get a fork to give him some burrito he asked impatiently "are you holding out on me?"

We can never say too many times how wonderful you are Danna. Thank you for understanding that visiting Mike can at first be awkward. Visitors know from the blog that he has good and bad days. Reading and seeing how you respond to Mike's confusion helps. You have such a calming and caring nature. I will take some cues from you when I visit Mike again this week.

I hope you will take a little time for yourself while your parents are in town. love KathyC

Anonymous said...

Military pilot who had sex with an 11 year-old boy when he was 17!!


As a child he was an aggressive sexual preditor who violated both his brothers both of whom went on to have homosexual experiences.

How long did he continue to think about boys when he masterbated??? In basic training? Into his flight training?