Houston Report

Things went pretty well yesterday. The boys were very good on the drive over.
We had a minor "incident" in the parking garage right before my neurologist appointment. This is the tightest, most obnoxious parking garage ever. We had to go up 10 levels to find a spot. And Ben accidentally clipped the corner of an Acura SUV going around the corner of level 5.

Obnoxious. We left a note an the guy called last night, very grateful that Ben owned up. But we know it will be a pretty chunk of change since the guy said he'd just take it to the Acura Dealership. Oh well.

My neurologist's evaluation was good and bad. The walking test was very hard, as I thought. I only made it 70 meters, which definitely was worse than last June's 150 meters. But all my other tests were great. My upper body strength and coordination is perfect, no problems with the eyes, and I passed my math test with flying colors again. :-) (I'm trying to find my previous post about the math test, but can't find it. It involves listening to this guy on a CD saying a sequence of numbers about 3 seconds apart. You have to add the first two, and say the answer. Then he says the next number, and you have to add that to the last number he said (NOT to the sum which you just said), and then say the sum. Then he says a new number and you add that one to the last number he said, etc. It gets complicated trying to add the two numbers while keeping in your head the last number the guy said. Anyway, the nurses were all impressed last year when I got 100%, and this year the nurse (a different one), was equally impressed. What can I say? I'm good at multi-tasking. And addition.)

I talked to him about the Baclofen pump, and he thought that was a good idea. My leg strength seems unchanged to me, but my stiffness really is a problem.

Anyway, I am trying not to let the walking test discourage me. My next evaluation in another 6 months will be more telling. If I've stayed the same, then great. I can hope for that. I did have a really terrible exacerbation in the hospital after a bad reaction to one of the chemo drugs, so it is very possible that my decreased function since last June was due to that episode.
I also had 19 vials of blood drawn, an EKG, and my MRI at night.


Here is what an MRI machine looks like. You lay on the stretcher thing and they roll you inside the cylinder. But not before strapping your head into this cage thing, and stuffing small towels around the sides of your head so you literally cannot move at all. I try to keep my eyes closed because if I think too much about being trapped inside that little cylinder, I can go a little nutso! Once inside, the magnet starts, and it makes the WEIRDEST noises. Bangs and bumps and machine-gun sounds, and buzzes and all sorts of weird things. Pleasant. At least my MRI machine, being at the Texas Children's Hospital (where they have a super-duper fancy high resolution MRI machine), had a bunch of Disney stickers on it. :-)

Anyway, the MRI was miserable, as usual. It's so odd. My first couple of MRI's I ever had were just fine. I even was able to fall asleep in the MRI machine (weird, I know). But the last few have been awful. Either I get congested and can't breathe through my nose the whole time (wah, wah, I know, but I can't tell you how much I HATE that), or my head just gets in the wrong position and HURTS. That happened last night. It started to hurt not too long into the MRI, and by the time they pulled me out, my head hurt so bad, I thought I might throw up. There is something absolutely unendurable about having pain when you cannot move. I kept trying to talk myself out of it, telling myself that objectively the pain wasn't *that* bad, I've had much worse. But something about not being able to move in any way just made it so horrible. I actually accidentally moved slightly during one of the scans and they had to repeat it. I could have sworn I did not move even a fraction of a centimeter, but apparently I did.
I went through every poem the boys have memorized this year. Sang (in my head) every primary and hymn I could remember. Tried to remember old Girl Scout songs and campfire songs. Anything to distract myself from the pain and claustrophobia.
At least it wasn't the 3 hour MRI. It was about 1 hour 35 minutes, and I was SO glad to get out of that thing. If I were to design an MRI machine, I'd put a little clock inside that ticks off the minutes left. It's easier to endure pain or discomfort when you know when it will end. When you have no idea, it is pretty hard. And my sense of time gets all messed up in the MRI machine, and it starts feeling like I've been inside for hours and I'll never get out.
Thank goodness it is 6 months until my next one. I counted and I believe this is my 8th MRI. Too many.
I don't know if or when I'll get results from the MRI. But like I said, I'm going to try not to read too much into the results and wait another 6 months.
At least it is over! We got home at about 1:30 AM, and slept in late this morning. Now I have to get busy with lessons!
Thank you for everyone's prayers and positive thoughts. I needed them!