posted by Mary Lello, Saturday, August 22, 2009, 5:30 AM
The day after Jim's Avastin infusion is always a little harder. It's not like getting chemo or radiation but it is a big hit of powerful medicine and Jim always takes an energetic dive.
Every morning when I hear Jim stirring I will run upstairs to just monitor his barefooted, jerky little shuffle to the bathroom. I always ask him "how are you feeling this morning?" and most mornings he will respond "pretty good" and smile at me. But this morning he was sitting on the edge of the bed and his response was "I'm tired Mary. When am I going to get better?". How to respond to this except to remind him it is the morning after Avastin and he's feeling that dip, that he will only feel better and stronger again from this medicine, it's keeping him alive and helping us to take one step at a time up this incredibly steep mountain side.
Empty words sometimes when all you feel is like shit and depressed. It took him twice as long to dress today and he needed a wee bit more help from me then what is normal for him now. I pointed at a picture on his dresser of the 2 of us in an embrace. I believe our friend, Mick Cochran, took this picture on Popham Beach back in the early '90's. I told Jim to just look at that man - a big smiling, deeply dippled Jim Daniels - and before I could finish what I meant to say Jim said "where he is? Where is that man?" Oh boy, that did it. We put our heads together and just cried.
Brain cancer is unlike other cancers as it takes away some of who you were. Messing with the brain is a whole different ball game. As I have said before, I DO see more of JIm these days but I haven't seen that big smile in a long time. I haven't heard his super quick wit and one liners in a long time. I miss that laughing Jim. And although I believe he's still here he's not ready to surface yet.
On a happier note, Dr. Weisburg is very pleased with Jim's progress. She reminded Jim that back in April (4 months ago!) most of the people in her office believed that Jim might not make it, that he would be "underground". So everyone, including herself, is delighted to see him every 2 weeks and to see how he is progressing by talking better, walking better and looking better. This brightened his spirits and has been a good reminder to us.
Tomorrow, perhaps, will be a better day. We are going to David and Betsy Puelle's camp on a lake. Jim loves hanging with David and I love seeing Jim in the water bouncing around with his life vest on so I'm sure a better day is coming.
I shall keep you posted.
Loving you all back,