Thursday, May 4, 2006 - evening

[South Park's rendition of Mike, Bax, and Danna - by Dondon - with Bax added by Mike.]

Mike looked so good today. Great color, very alert. So good that they wheeled him to radiation in a wheelchair instead of wheeling him down in the bed. He also was able to get himself from the wheelchair to the chair with minimal help and ate a good amount at lunch.

I told one of the doctors who works with cardiologists Dr. Mandel (her name's Cindy) how great Mike is today. She said that his hemoglobin is way up - from the blood he received yesterday. I told her how well he had done getting from wheelchair to chair for lunch. I showed her the sign I posted above his bed indicating that he needs to be moved around a lot cause he's going to be here for 6 weeks or so. She said that was a great idea so that new nurses would realize the importance of getting him up even when he's tired.

Mike perked up and chimed right in:

"It's true. You really have to tell them what each individual patient can do, otherwise they tend to use the least common denominator.”

Cindy and I grabbed each others hand in shock. It was such a lengthy and meaningful statement compared to what he has been doing lately.

Later, it was really warm in his room and at one point I said I was so sweaty I was glistening like a pig. Mike said, “Mmmmm…. Glistening pig... that's hot.”

Very Mike.

********

I'm still not sure what exactly to do with the info I got from the NYU neurosurgeon this morning. I talked to Kelly (Andrews and Evans' nurse) late morning and told her that I really needed to have that family meeting as soon as possible. I told her that I had received information from another experienced surgeon that suggested there was an alternative path we should be taking with Mike. I told her that I trusted Evans and Andrews had a plan for us and that there were good reasons behind it, but I need to be clear on exactly what that plan is and at what point they move to a contingency plan in the event that Mike does not improve. Dr. Wisoff (NYU) was honest and told me he would rather not sit down or conference call with Evans and Andrews. He said it would be uncomfortable since their entire philosophies are different. I respect that. He said from minute one that he embraces a philosophy of radical aggressive resection through craniotomy. He admitted that his approach is not deemed best by all. Point here being that the meeting will not include the NYU doc.

*********

I've been thinking a bit about how people are responding to our story. I've heard from many family, friends, and distant acquaintances that there's something addictively devastating about this saga. Some folks tell me they have trouble sleeping, check the blog throughout the day, reread passages over and over. And while I certainly appreciate folks being up on the latest details prior to visiting Michael in the hospital, and I do draw strength from the knowledge that I'm not alone here … I do fear that people could drown in this.

And that is the last thing Michael would want. He doesn't like pity and he is not a fan of wallowing. Period. Mike has seen his fair share of hardship prior to the S.F.T. and was never one to dwell on it. He's a positive guy who sees the glass half full. Always.

I have actually told several of our friends to take a break from this - Go do your thing. Live your life! Have fun! Check in with us in a few days or a week. If Mike felt that people were feeling guilty about having a good time in the face of his situation, he would be so annoyed. Seriously… I think he would be pissed off. And if you know Mike well, you know this is absolutely true.

I realize that in recent days I have used this blog as a space to vent my frustration in a way I hadn't been doing before. Earlier I had just used it to communicate the latest details of Mike's condition to a large number of people in a very efficient way. Perhaps in changing the tone of my entries I turned the content of the blog into a more painful experience. But please know that I use this space as the forum where I can get it out of my system. But, I don't sit around crying all day. I make a point to avoid wallowing or getting buried because that is not what Mike would want. Simple as that. And then there's Baxter - who shakes his groove thing, squeals with delight, screams "touchdown!" when he feeds himself with a spoon and runs into his playhouse, throws the shutters of the window open and says with his head tilted to the side, "hellllloooowwwww."

I think we all could learn a lot from Mike's own words about the situation. He wrote a long email to friends and family in late October, announcing his diagnosis. He gave the dry boring details of the case and ended with the following:

“I am feeling surprisingly calm about this. I am fortunate in that I tend to worry about things I can control, but not so much about things I can't. I'm in excellent hands at Jefferson, and I am in very good health overall, so I should bounce back well. It's not the obstacles you face, but how you react to them that's important. I'm confident this will be just another chapter in the story of my life.

I appreciate your thoughts and well wishes, and will send an update once I'm home and able to recognize objects again.”

That's Mike - in a nutshell. "It's not the obstacles you face, but how you react to them that's important."

So, take a break from all this. Enjoy your own partners, children, jobs, housework, and home repair projects. Instead of a source of devastation, try to use this story as a source of inspiration. This is going to be a long haul and we'll need to draw strength from all of you at various points down the road. And yes, some days I'll be at a low point and my entry will be a downer, but know that after I close my laptop, I feel lighter. And when I leave my house to head to the hospital, I get into my car, put the windows down, sunglasses on and appreciate the warmth of the sun as I sing Jack Johnson at the top of my lungs.