Thursday, August 16, 2007
My daughter and her friends: Are they laughing at you?*
Today, 5 months after starting the process, I got the call that JC, the main man of neurology at my hospital, signed my Tysabri order. Which, apparently, means that tomorrow the infusion center will call me to schedule the first infusion. I have to get it scheduled before August 31, or else go back and do another series of MRIs of the brain and spine. I'd definitely prefer not to, since the stuff they put into the IV (I can't remember the name of it) makes me go loco. Seriously. I have a weird reaction to it. Gadolinium, I think it is.
I'm trying not to be whiney and complainy about my medical procedures. I don't do a very good job, though. My last MRI - a couple of months ago, turned out to be disturbing. They measure MS in terms of degrees of 'brain damage'. Basically, three categories - small, medium and large. Those aren't the actual words, but you get the drift. When I went to have the films reviewed, she said I was at the 'medium' level, which was new, and showed me a section on my corpus callosum which was also new. She showed me these lesions that looked like fingers - like a big, white, hand forming around that part of the brain. She said "this is a classic set of MS lesions", and that that particular area is where you'd see cognitive functionality being affected (one of my particular losses).
Later, when I went in to work, I was telling some friends about the big, white hand and we started referring to it as the "White People in My Brain". I've got white people in my brain!!! "Um, the white people in my brain are stopping me from understanding this Venn diagram...'
Another reason I dropped out of western medicine was because of things like this. Is it really helpful to know this? I really don't know. I wonder if, when it comes to damaging lesions in the brain, that ignorance might be bliss. I figure, you are going to experience whatever the damage is regardless of whether you saw it ahead of time.
The Tysabri news felt a bit bittersweet, because fellow MS'er Courtney had a bad reaction to her 2nd infusion yesterday, which was pretty heartbreaking for her. They say if you have an allergy, or sensitivity to it, it will most likely show on the 2nd one. Given the fear about PML, I've read they don't allow you to continue with the infusions after that. But that could be changing. There are been no new PML deaths since it went back on the market 14 months ago. Like me, Courtney seems to be a side effect magnet with the MS drugs. If we take it, they will come.
So, yesterday, I had the big mammo grammo. I don't know how long it has been since I had one. (My friend Paul said "let's see, when did St. Elmo's Fire come out?" Which just made me laugh like crazy.)
I had my reasons. The last time I had one, they sent me in for surgery to have a tumor removed. Benign, as it turned out. It was a very unpleasant procedure that I felt I shouldn't have had to do to begin with. I should have had the balls to ask them to do a needle biopsy first, but at that time I wasn't aggressive enough to do that. I tend to get intimidated by the white coats and lose my sense of self. Now, when I have an important appointment that might require decisions, I bring my friend Scotti. Scotti is awesome - she survived metastasized malignant melanoma, and she's a great procedure buddy. She was by my side during my period of really awful miscarriages, one of which was an emergency room surgical thing with massive blood loss. But I dropped out of western medicine world for a while there because, I think, I was tired of the drama.
I think it was about 14 years ago. So I was due. I'll pass on all the details of the mammo grammo (which Adam Sandler character says things like that? Opera man? Or the Louisiana guy? I started saying it because it made me laugh and thus feel less anxious.) Though I will say, the technician told me I looked like I was scared to death. Which I was. It was my first one since my 'enhancements' and I just could not imagine how this was going to happen.
It actually went remarkably well. Much less pain than the last time. It's funny - I have no reason to think that there are any other tumors or anything, but until they send me the "prognosis negative" letter, there's that period of waiting that tends to get on my nerves. Much like the Tysabri. I realized today, when I got the call, that I had had this undercurrent of "waiting anxiety" happening for several months.
I am just not that good with the waiting thing. However, in the last year of diagnosing Adrian's dyslexia, finding the right school for him, living through Dagny's 7th grade, having my job change, and trying to get the Tysabri thing in place, I have done a lot of it. And here I am, with many of those things resolved or at least having 'resolution potential'. I have taken most of these things quite literally one step at a time. I would often not know what the next step would be until I finished the current step. It's been a good lesson in that tortoise-and-the-hare kind of stuff.
Next up: 3rd grade, 8th grade, life on Tysabri? Here I come.
I've gotta get some sleep - I think the white people are moving furniture around up there.