[Photo now hanging in Mike's room as an 8X10. I asked if he could see it and he said yes. He even knew it was taken at Christmas.]
Still looking ahead to scheduling dinner dates for next week (May 8-12 - also nurse appreciation week)
- Go to: www.google.com/calendar
- Login with the email address: 185cranios (or firstname.lastname@example.org)
- Password: welovemike
I told Andrews once again that I simply can't imagine Mike in his current state forever. On his good days (like today… thus far), Mike is alert, but tired, knows where he is, and can have a conversation fairly appropriately. But even on those days, his vision is severely impaired, he has trouble feeding himself, his short term memory doesn't exist, he hallucinates, and is incontinent. On his bad days, he's got all of that going on, plus is hard to rouse, has a fever, doesn't eat, and is unaware of practically everything happening around him. What I keep trying to get at with the doctors is what level of quality of life it is that they are hoping to maintain for Mike. Basically, is their priority just keeping him alive, or is it getting him better? Dr. Andrews told me that they are still attacking this as though Mike's condition may improve. With the radiation and draining of the cyst, he imagines it's quite possible that not-too-far down the road, Mike's short term memory may come back, he'll be more awake, the hallucinations may subside, and he may regain control of his bodily functions.
Dr. Andrews is always extremely sympathetic and he's says he is certain that he and I are on the same page. He said what he's said before, that is, he knows that all I want to know is if I am going to get Mike back - and that's something he just can't tell me for sure. I told him I will probably go over the same huge questions with him every day and he might have to reiterate the same thing everyday, “We don't have enough information to know what the future holds.” I'm ok with that answer - I have to be. I just appreciate being able to ask him over and over without him tiring of my inquiries. Today he was very sweet, acknowledged how brutal this journey has been for us, and said my questions were never a bother.
I also emphasized to Dr. Andrews that I am not at all ready for Mike to die. I'm just not. He might be only 10-30% Mike on any given day, but at least it's better than 0% Mike. Today, for example, the physical therapist got Mike up and walking a tiny bit and sat him in a chair. He looked great. It was about 10:45 am and the sun was streaming in his window. I told him I thought he had the best room in the hospital. He said, “That's because my beautiful wife is in it.” I also told Mike and nurse practitioner, Jamie, that he's got short-term memory loss but the long-term memory is pretty great. She said it was remarkable how great he was with old information already stored in memory. “Like me, for example,” I said to Mike, “I'm in there. In your long-term memory box. Can't get rid of me.”
“No matter how hard I try,” he said with a smile.
That's why I'm here at the hospital every day. Not just to be his advocate and make sure he gets fed/turned/ up in a chair - but to be with him. Cause every once in a while, real Mike rises to the surface and I get a moment with him. A kiss, a smile, a moment to hold his hand, or even a little insult. What more can a girl ask for?
Mike went for radiation therapy from 11:20 am until 12:30 pm. Slept from 12:45 until 1:45, Got him up in a chair from 1:45 until 2:30 for lunch listening to some music (thanks for the Van Morrison CD, Kathy! He loved it.). He ate a wawa salad with feta, cherries, walnuts and chicken - and seemed to love it even though his terrible wife forgot the dressing! At 2:30 pm he got back in bed to dose for the afternoon (likely until dinner).
I took the advice of my cousin's wife, Mary out in Wisconsin, and from my sister, Jae, and put a recent picture of Mike, Bax and me up in his room (the one included in this post above). I enlarged it to an 8X10 and I put the date on it: Christmas 2005. Mike is so happy in this photo and his eyes are full of life. He's got all his Mike-hair and we're holding Baxter, dressed in cute holiday garb. My sister suggested that hanging this photo and indicating the date on it would help the hospital staff understand just how recently Mike was Mike and that this guy lying in this bed, asleep 22 hours/day is a dynamic person who is filled with life. I hung it up this morning around 11, and when a nurse came in to help me get Mike back into bed at 2:30 pm, she looked up at the photo on the wall.
“That was Christmas 2005? Like just 4 months ago?” She asked.
“Yup,” I replied.
She looked back at Mike already asleep in bed, “Wow,” is all she said.