Wednesday, April 19, 2006 - evening
I'm feeling far from Mike today. The real Mike, I mean. So these photos are to remind everyone of who Mike really is. [And yes, I am a giant giant girl... as evidenced by the photo on the left.] The one on the right was taken on the ferry to Martha's Vineyard in July 2002 [photo featuring Scott and Tom-tom]. I feel like it really captures Mike. Goofy goofy Mike.
Today he was at least too fatigued to act as impulsive as yesterday. Apparently, after he pulled out the picc line yesterday, they got another IV in him which he then proceeded to pull out in the night. They got a new picc line and IV in him today, wrapped them in gauze to hide them and restrained Mike's wrists loosely to the bed so that he couldn't pull out the picc or IV.
The resident says that the plan is to start radiation tomorrow. Today they got an MRI and CT scan to use to map the coordinates of the tumor onto the mask - or something like that. Rather than bringing him by ambulance each day from the Gibbon building to radiotherapy 1 block away, they're going to try to move him to the NICU that is in house in the other Thomas Jefferson building where radiation happens. That will be easier on everyone - mike included. And I asked if that other unit is equipped to handle someone who shows such impulsive behavior as Mike's and they said absolutely.
When he got back from the mapping process, I got him to be awake for a few minutes. "Who am I, Mike?"
"Smoosher!" True dat. For those of you who don't know just how lame Mike and I are ...now you do. We call each other smoosher (def. n. One who smooshes.) "Smoosher" is the inscription on each of our wedding bands.
He seemed content. I gave him my big stuffed lion, "Hobbes," and he snuggled up to him and dozed off again.
I feel like I need to take a moment to say something that's been on my mind. I know that many of us are having a hard time grasping what's going on. Most of us - myself most of all - would like to imagine that Mike will be fine. So much so that we feel like there must be some answer - some magic solution that will just bring Mike back. The truth is... we just don't know. We don't know. That's it. People can ask me a thousand times "Why didn't they do x?" or "Why haven't they done y?" or worse "I think they should have blah blah blah." but the situation is so freaking complicated that I cannot begin to articulate the answers to those questions. His chart is unbelievably thick. 9 surgeries. Almost 50 total days in the ICU. His tumor affects every basic body function: cortisol, thyroid, electrolyte balance and sodium, body temperature, hunger, thirst, vision, as well as short-term memory, affective disposition, and other subtle neurological functions. For any of us to imply that we know what should be done here is just whacky. Coming from a place of love, yes. But whacky.
And while my lawyer friends might sh*t themselves as they read this, it does not help me to try to pin blame on someone for any piece of this situation. Yes, I'm pissed. Yes, I wish there were an easy answer. There's not. And I'm not the kind of bitter person who will sit and find someone to be angry at over what appears to be shitty shitty shitty luck. I was not always this way. Quite the opposite. I'm from New Hampshire: "Live free or Die." Translation: Don't trust anyone. But I learned from a very wise and peaceful (and handsome) gentleman to change my ways.
When Mike was first diagnosed with the tumor on Oct 20th last year, I was beside myself with anger and pain. One night I lost it, "It's not fair! It's just not fair!" I wailed like an angst-ridden child. "We just got married. We have a baby. We're just starting our lives! It's not fair!"
To which Mike calmly replied, "And who would it be fair to, smoosher? Would it be fair if it happened to someone who didn't have kids? Would it be fair to some old person? It's just luck. Dumb luck. That's all."
Freaking Mike. Always so reasonable. But he was right. So let's all be constructive in how we approach this unthinkable situation. And let's try to channel Mr. Young, shall we? It's just luck. Dumb luck.
So yes, of course we can be angry and bitter sometimes, but let's not let it cloud our ability to see straight.
PS: not sure I'm saying this to anyone in particular or if it's just a letter to myself... but there you have it.