posted by Mary Lello, Saturday, April 25, 2009, 4:44 PM
I'm always fascinated by how the word travels through the network of friends. One person calls to ask how the MRI was and already a pretty big group of friends know what's going on. Like tribal drums that beat out some morse code the word gets out. It's wonderful.
But, I'm very aware that not all of you are within hearing distance of this drum beat so I shall fill you in on the most recent MRI that was done on Tues. 4/20/09. We went and saw Weisburg yesterday, Friday 4/24 to hear the latest. She says that the tumor has not gotten any better but it has not gotten any worse either. This is good in the big picture and not a huge surprise. But all the bad symptoms we are dealing with now; right sided paralysis, inability to put words into a sentence, frequent urination, pain that he can't really identify and the need to sleep for hours and hours is actually the result of the newest diagnosis of hydrocephalus, or what use to be called water on the brain.
Weisburg had a neuro surgeon look at Jim's MRI on Fri. and he basically said due to where the fluid is pooling it is not really possible to put drains in. She was going to send an email to Dr. Wen at Dana Faber in Boston to see if they have a way to deal with as well as speak with Jim's surgeon, Dr. Wilson on Monday. I love this woman and the fact that she doesn't take no for answer that easily.
Basically, we need to get this fluid under control in order to improve Jim's quality of life right now. So we've taken the steroids up again to a whopping 24 mgs/day. Weisburg is hoping this will reduce the inflammation and if we see a change in the symptoms then she wants to start Avastin on Tuesday and CPT-11, a kind of chemo to compliment the Avastin. Avastin is an infusion that happens every other week, takes a couple hours and can be done at the center in Scarborough. CPT-11 I'm not sure how that is dispenced but that is the alternate week I believe she said. This was what I was hoping to hear her say but now it comes with a double edged sword. The Avastin will NOT reduce the fluid in the brain and we need to address that before we can do the Avastin! GRRRRR!!!
Jim did put together a complete sentence this morning when he asked me how long I would be gone on a bike ride today. That was the most I'd heard him say in a week!!! He also has slept less today, was able to sit up on the couch when friends dropped in this afternoon and seemed to understand much of the conversation going on around him He is still on the day bed as getting him upstairs would be horrible right now and due to the frequent urination he has me up several times/night. Sleep deprived you ask? Oh, yeah!
It is one more bump in this rocky road for us. I worry that Jim may be losing hope and getting too discouraged. He's in pain and he's not eating real well. I tell him, any animal that wants to live will eat but an animal that wishes to die will stop eating. He'll look at me and pick up that fork and force himself to finish whatever is on his plate. Whatever works!
I do believe all of you when you say we are in your prayers and thoughts. I want to ask you to continue this vigilance for us as we are not out of the woods yet. In fact, I feel we are in a very thick jungle without a machete sometimes! So keep the beams of light and the prayers coming to help light the way for us and for Jim.
Send Jim your love and know that he feels it, always, on some level. And also know that we are loving you all back.