Wednesday, May 31, 2006
[Photo: US3 Cantaloop - one of the many songs to which Mike quite adeptly shakes his groove thang while sitting up in the chair]
Mike is up and alert today. He fed himself lunch and was even reaching for his orange water bottle several times throughout the day. His nurse, Nicole, helped get him into his chair and I went to go get mike some ice. When I came back, he had already eaten half his carrots and he had taken the straw from his juice box, had put it in the box, and was drinking it.
When he was done his lunch he pushed his tray away from him and scooted towards the edge of the chair. When I asked what he was doing he said he was getting back into bed. I kept trying to delay him until I could clear his path and be there to help. I turned my back as I threw some trash away and I turned back to see him starting to get up.
“Mike! Wait wait wait!”
He laughed at me and shook his head.
“What is that? Why are you laughing at me?”
“Cause,” he said sitting back down in the chair, “It’s like this far” with his hands about a foot apart from one another. He was right. That is about how far it was.
“Ok. Fine. You do it. But I’m going to stand here.”
So, I stand and watch and Mike stands straight up, takes two steps, sits on the edge of the bed, lays down, and hoists himself up closer to the top of the bed using his legs and arms to scoot him.
I also asked if he’d like his phone by him on the food tray. He hasn’t had his phone close to him in 2 months, because it didn’t seem like he was well enough to talk on it. He said he would like the phone on the table. I got Mike’s phone number from the nurses’ station and called his phone with my cell phone while I was in the room to make sure it worked. He answered it, laughing at the ridiculousness of my talking to him on the phone while 4 feet away from him. The phone has a really weird ring, though. More like an alarm clock than a phone.
“Are you going to know that weird noise is the phone ringing?” I asked him.
“Well,” he said raising his eyebrows, “It’s a weird sound and it’s coming from the phone,” with an overdramatic gesture toward the telephone, “My guess is that it’s the phone ringing.”
Yesterday, while Michaela was visiting, I told Mike about some friends of ours who are just 11 weeks pregnant…with twins. He was thrilled. SO excited!
A few days prior, the couple had been in the room and had told Mike the news themselves. And he was thrilled then, too. Eyes opened wide and truly overjoyed with the news. The truth is, I’ve told Mike about this particular pregnancy (which I’m not sure I’m allowed to leak, so stay tuned) about 12-15 times over the past 6 weeks. And every time he gushes. (Yes, I got advanced notice way early because the parents-to-be thought I could use some fun and happy news given the S.F.T.).
Well, when these friends were there a few days ago, one of the pregnant pair said, “We love coming to see Mike because we get the thrill of sharing the news for the first time every time. Whenever I want to talk about it with someone without making them sick of hearing about it – I just come see Mike!”
I had quite a good laugh about it. Yesterday, I decided to share this story with Mike. It seems like it could be kind of a tricky thing - making fun of his lack of short term memory to his face…. But Mike is Mike. He’s funny and sees comedy in all things. So, after I shared the “they’re pregnant with twins” news with him (again), and he replied, "Oh my gosh! Twins! That's awesome" (again), I told him (for the gazillionth time) how he’s been having some short term memory issues and how everytime we tell him about their pregnancy, he’s as excited as he was the first time he heard the news. He nodded and smiled a polite smile.
I then told him what one of the parents-to-be had said – that whenever they want the feeling of sharing the news for the first time to an excited listener without making everyone sick of hearing about it, they come to share the news with Mike. Mike had a hearty laugh at this that actually threw him back a bit in the chair. “That’s awesome!” he said.
That’s why Mike is amazing. He sees the humor and the positive side throughout this process. He’s never grumpy or pissed off. Sure, you could attribute that to the fact that he has no knowledge of how freaking long he really has been in the hospital – but I think it’s more about who Mike is as a person.
He has a new roommate in 6606. An older Greek gentleman who’s hard to understand. Mr. Koudis is his name. He asked me a ton of questions – Where I’m from, what I do. Then I asked how he was, “Bad. Very bad.” He said as his daughter shook her head and rolled her eyes. “I used to do wood working, with my hands,” he said. As I took a moment to figure out what “wuh-wuk” was, his daughter whispered the translation my way, "woodwork." He continued, “Now I can’t even touch my tools.”
A lot of people can’t touch their toes, I think. Oh… tools. He puts his hand to his forehead, “I’m going to go mad. I am. I’m going to go mad crazy.”
“No you’re not.” I said, “You’re going to get better and find other things to do. You need to have a chat with this guy,” I said pointing towards Mike asleep in the bed, “You need to stay positive. It’s good for you.”
I sometimes think about how when Mike gets well (not if, I’ve decided… it’s when) his vision is probably not going to return. This means he won’t really be able to enjoy movies like in the past, he won’t be able to drive, he won’t be able to appreciate good artwork. He’ll have to relearn how to get around the house, how to navigate the kitchen.
But, I know that Mike is going to be happy. It will take a while, but he will be. I can already picture him doing things like playing more guitar, listening to lots of great music, NPR, books on tape. Figuring out how to cook and bake in his kitchen again. Enjoying the company of good food and good friends like he always has. And he’ll drink it all in. I know it. Yes, there will be times when I’m sure he’ll be down on his luck – but he won’t let himself stay in that place. That’s just not how Mike works.
Thank gosh he’s who he is.
All day I've been trying to get in touch with Dr. Evans or Andrews about the plan for Mike. Radiation is about done - I think he has about 3 or 4 left - and I want to know where we go from here. Straight to Magee for brain injury rehab? Directly to the O.R. to aspirate the cysts?
One of the n.p.s who rounded with Andrews this morning - the only n.p. I've never met - gave me some odd info... that Andrews thinks Mike's doing great and he's going to send him home to recover before aspirating the cysts. Judy, the n.p. who has been following our case since March, was like, "What? That can't be right. He must have meant straight to rehab."
I've learned not to jump to any conclusions until I hear the deal straight from Evans and Andrews.
UPDATE as of 8:55 pm: Andrews called me from his home. Radiation therapy is done on Tuesday. He said that he would like to see Mike recover a bit before we aspirate the cysts - as much as a month. I was quite surprised to hear this news. I thought they wanted to aspirate asap. However, Andrews made the case that the swelling in the midbrain region is significant but has decreased with the steroid (decadron). Since the steroid has bought us some time, as Andrews pointed out, there's no reason to rush into another surgery when we can take a more conservative approach and let Mike's brain heal for a few weeks.
Bottom line: He would like to see Mike start the rehab program and then have the cysts drained. He said we're going to get the ball rolling on the plan for Magee tomorrow by talking with the brain rehab people and with the social workers.
Finally, I thought you would all get a kick out of the love that the nursing techs have for Mike. Cammie, Shamell, Martia, and Chris all love him. And as one of the nurses said, "The girls are very protective of Mike." [Meaning, the techs]. One example? When his last roommate complained about the lack of privacy, the number of people in to see Mike and the music always playing on Mike's side of the room... Cammie was like, "No you DIDn't just say that about Mike. No you DIDn't." Then she explained that when they bathe him, feed him, or anything, they listen to music with him. It's what they've been doing for over a month (since he got to JHN) and that's not going to change no matter what.
When I told Mike the girls were all protective of him, he smiled, looked up at me and said, "Really? Awww.... that's so cute!"