confirm the diagnosis...

here's the message dr. p left on my cell phone voice mail last night:

"hi miss mcnally, this is dr pruitt. i do have your brain and cervical spine MRI reports. the cervical spine is fine, that's good news. the brain MRI in fact shows a couple of areas different from the one that they were concerned about initially that take up the dye and essentially nearly virtually confirm the diagnosis, in which instance i think you should have a course of steroids because the appearance of these two small areas with the dye to me means we might as well just try to turn it off perhaps the easiest way to reach me this evening would be..."

so there it is. i had gone to see ESotSM last night with paula (it made me cry this time); dr. p had called at some point when i was in the movies. i listened to her message as i was turning my key in the lock to get into my house last night. i got inside, and fell apart. stean wasn't home, the house was dark. i think i kinda stared at my phone for a while and sobbed. two more spots. my spotted mind. i don't understand any of this, really. i suppose there are hundreds of potential spots that could happen in a brain, and i suppose it is good news that there was nothing on the cervical scans, but jesus christ. jesus christ! that's it, right? no more hope that this isn't going to turn into MS... and that hope disappeared so quickly. i got barely a month between the diagnosis of spot number one (may 7th) and the discovery of spots two and three.

i called dr p back. it was about 10 o'clock, so i paged her, thinking that if it was too late, paging her would be less disturbing than calling her home number. and i don't want to be an annoying, freaked out patient (even though "freaked out" is a mild way of putting how i feel right now). she called me back almost immediately, and we talked for fifteen minutes or so. i told her that i was scared, that i had burst into tears when i listened to her message, and i asked her if those two new spots meant that things were getting worse. she said no, it just meant that things were still active, and she wanted to put me on steroids to get rid of the inflammation. she asked me if i had felt okay and i told her i feel like i'm on anti-seizure meds, but other than that, no symptoms. she said i wouldn't be feeling symptoms--these are very small lesions on the right side of my brain. she told me that she's seen patients who have started off much worse than me who had a few things happen quickly, and then things settled down. she said this could very well settle down with me.

(what she didn't say, and i'm sure it is true, is that there are patients who start off with much better than me and for whom things do not settle down.)

so, i'll do an IV course of medrol for three days. a home health nurse will come to my house to set things up, and i'll give myself the drug for one hour three days in a row. then i'll take 10-12 days of oral prednisone. dr. p says the steroids will make me feel, in her words, "revved up". given that i get uncomfortably anxious if i have too much coffee, i'm expecting to need a new xanax prescription to get me through this. but it will clear up the inflammation. and i'm hoping my vision will return. and then i can ride my bike! and maybe even get taken off the carbamazepine!!!

i really like dr. p. she's brilliant, and while her version of compassion is what you would expect from one who is extremely intelligent, she's still been good with me. last night on the phone she told me she didn't want me to hang up the phone and start crying, because, while this isn't good news, it is still much better than what i was being told initially, and there is no reason why i can't continue with my life and my plans for school. she said this only further evinces that we're pursuing the right course of treatment and i am only days away from beginning the avonex treatment. but despite the doctor's orders, i cried when i got off the phone with her.

when stean got home i was still a mess. i had been on the phone with dad for about an hour, and dad said some wonderfully hopeful things, but i wasn't at that point ready to hear them. i'm still not ready to hear them. i said to stean, as we were all in the kitchen (all of us = stean, me, dog, and cats), "this moment, this is the best i will ever be--it's only going to get worse."

it's only going to get worse.

there will only be more spots on my brain. never less. those three that i have will never go away. even if there is a cure, the damage that will have been done up to that point will never be undone.

i've been thinking a lot about the MRI films from april of 2002. my poor brain--so clean and untainted at that point. god, that's such a stupid thing to say, but those two years have gone by quickly, and if i go 2 years with nothing, and then 3 months with 3 spots, what does that mean for the rest of my life?

i have got to figure out a way to stop feeling so fearful all the time. i'm a mess of neuroses--my brain is messy on all levels. i've become claustrophobic. i'm probably mildly depressed. i think about my own vulnerability and mortality all the time. i honestly want to run away from my life, my self. unfortunately that is just not possible.

right now i'm not sure that i can handle this. best case scenario--if things stay the same forever, i'm not sure that i can handle it. my brain. i have a brain disease!!! i mean, i know it could be so much worse--it could be ALS or alzheimer's or something, but knowing that things could be worse does not make me feel better. i feel resentful and jealous of all the people around me who are healthy. i feel angry that i'm now being forced to think about things like pre-existing conditions clauses in health insurance policies or what i'm going to do with my used needles on the avonex. that's fucked up and wrong.

spots in the ground look like lesions. people, especially women, in wheelchairs or using canes or walkers immediately look like me.

i'm getting rid of my pink hair on tuesday. it's not really pink anymore, except in a few places. i'll have boring brown hair again. the thing is, i don't want to look like everyone else anymore. i don't feel like everyone else anymore. i don't even feel like me.