5.04.2006

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.

8 comments:

francine said...

I have to say, Danna, that sometimes you read my mind. I recently re-read Mike's october email about his condition also. and I also remembered that he and rachel and I had a conversation at Scott and Michaela's post-elopement shin dig (many moons ago) that involved exactly the same sentiment. I don't know how we got on the topic, but we were sort of discussing bad luck and good luck and how the universe works, and he said that things just happen, and it's how you react to them that defines them.

I'm so, so glad that today was a good day for Mike. At my first visit with him last night, he was extremely tired and seemed just unable to interact with us at all. I just couldn't imagine him having some of the more alert and hopeful and happy interactions I'd read about in other entries. But I'm so impressed with today's events! That boy was more articulate in his comment about nursing care than I could be, even with a big tumor in his head :)

and good point about over-blog-reading. I've been guilty of that myself.

Anonymous said...

Aunt Reggie just called and told me to read your blog entry tonight. She knew I was having a difficult time being back home and unable to help you and Baxter like I did last week. I just haven't known what to do with myself since I got home. But Danna, your entry tonight brings my heart comfort and a kind of relief. First, I was looking for some glimmer of hope - some good news about Mike... and it sounds like today was a really good one for Mike - thanks to some blood donor somewhere! Second, I have been feeling huge guilt about my life being "normal". I know first hand how strong you are in dealing with this. I've seen you moving forward with your daily activities as best you can, enjoying Baxter to the fullest, and singing along to the radio despite everything. I will do my best to follow in your footsteps and to honor all that Mike is about by living my life to the fullest and not wallowing in this.

I just wanted to say a public thank you for your words of wisdom tonight, and for the permission to not be overly obsessive about this whole ordeal. It is hauntingly addictive to read this blog - many people have said that. And yet, for you, it is an undeniable outlet to purge your entire being of the days events. I've seen you before you blog and then after you blog... it's like a kind of peace comes over you when you've finished writing all that you need to say and reading all the comments that so many loving people have written. I guess it's about time I learned some lessons from my "little" sis, alias "Professor Young". I need to be better about putting the guilt aside and just living. Danna - You really are an amazing person with an AMAZING group of friends!

You, Mike, and Baxter are in my thoughts and prayers constantly. Please give Bax a big smooch for me. I'm here for you day or night. Loving you always, Jae

CSM said...

dannagal... we should change your name to amazingal. :-)

quick update for blog-checking-folk: had a dinner date with mr. young this evening. we got a late start b/c of an emergency in the ward-- but when we finally got to dine-- DAMN! He ate like crazy. The meal du jour was salmon and carrots. No starch (bummer), but there was the traditional small bland dinner roll... and PIE for dessert. He ate almost everything... more than i've seen him eat in ages! woo hoo!!! i even tried to offer him a Wegman's choc chip cookie and he said NO-- because he was full!!!

we did chat for a bit... (or I chatted and asked Qs)... i now know that mike's favorite veggie is broccoli... (WHY? "Because I like it!" and he was an English major at UPenn (is this true???)... and... he is very familiar with 80s TV (we discussed Alyssa Milano-- who was on his roommate's TV... Mike knew she was on "Who's the Boss" with Tony Danza... and that Tony Danza was on "TAxi." Damn!)

Mike DID spend time looking around the room at things... he tried to make out some of the pix on the wall-- but had some difficulty... and he did see a cat on his tray (we agreed that it was likely because he was eating salmon)... but all in all it was a great visit. he sat up in bed the entire time-- and didn't even want to lie down when I offered.

After dinner, we played with the ewwy squeezy things and I made him a Lego creation (VISITORS: see if you can guess what it is -- on the windowsill). He couldn't tell what it was... and sorta wrinkled his nose at me when I explained what it was... But I chalk that up to my poor Lego-ing skills and his fine appreciation for art. LOL.

I even attempted to make him laugh by tap-dancing to the Duke Ellington CD. It was a brief minute-- because the look on his face was absolutely horrifying! I was actually embarrassed!!!!!! Me!!??!! HAHAHAHA

Sooo... without even trying, Mr. Young made me feel like a dork-- which was ABSOLUTELY WONDERFUL!!!

I can just imagine him thinking, "What the hell is that Crazy Susan Murphy doing NOW???"

Here's to a great Friday and a peaceful weekend.

Love, Susan

Anonymous said...

Danna - thank you. How can you be so wise and so beautiful? Thank you for reminding us of the way Mike sees things and for reminding us that in order for us to be stronger for you & Mike we need to occasionally be refreshed -- enJOY our daily lives and appreciate our friends, family and good health.
I can never say it as well as you & Mike have. Thank you. xox

Mary said...

Boy you are one smart cookie. Forget this academia stuff. Maybe you should get cracking on that screenplay of yours!

xoxo

Meh

Anonymous said...

Danna,

My son (almost 18) has a cranio as well, I read about you on our support group. Your description of Mike reminds me of my son.
"How you play your cards are more important than the hand you are dealt". That was his motto from day one. He had a conservative neurosurgeon- and needed radiation after a craniotomy. Radiation was extremly successful on his tumor. He is graduating at the top of his class in two weeks. My thoughts and prayers are with all three of you! Take care of yourself, and remember, there are craniopharygioma success stories out there.

Mom of Brad
Parker, Colorado

The Brain said...

Dear Mom of Brad - thank you for your story! It reminds me there is hope in our situation even if the day to day is difficult right now.
love,
danna

Heather said...

Ditto what the others said. You were right on target with what we were feeling. It's a little eerie actually...we were out of town this weekend and Matt checked in to get caught up on Mike last night and we saw the pics of Bax in the hospital and I just cried and cried thinking about Bax and his Daddy then we both headed to bed a little hollow and talked about maybe taking a break from the news for a little bit (like after Bush won the election). But then of course, I hadn't read all the entries I missed last night so I came back today and voila! here is your permission to take a break and the reminder that Mike wouldn't want anyone to feel crappy because of him. Of course, we have the liberty of stepping back for a while which you don't have, but I am glad that you are finding moments to enjoy the sun, even if it is on the way to the damn hospital.