Monday, August 18, 2008
As the Fingolimod Blog Turns
As if there weren't enough drama in my life, we now have the added excitement of an impending hurricane bearing down on us.
"Will she get the biopsies in time?"
"Will she have to drive through hurricane force winds to make it to the dermatologist?"
Tune in next week for "As the Fingolimod Blog Turns".
Last week I thought we were only waiting for the main trial HQ in Berlin to approve my MRI. Now I have to get chunks of skin cut off like some sick hazing ritual to prove I am worthy of continuing with Fingolimod.
Truth be told, I'd probably let them shave me bald and tattoo "STUPID" across my forehead if it meant a new bottle of pills. I've become such a Fingolimod junky. Sheesh.
My trial coordinator called this morning but because I had an insomniac moment last night and didn't go to sleep until 3am, I was unable to make the 10 yard dash in the alloted 6 rings of my cell phone before it went to voice mail. I had to listen to her message instead of being able to ask a zillion questions.
She said (good news) that she had spoken with Berlin about my MRI and it had been accepted as satisfatory (meaning the image quality and not necessarily the radiological findings). Then she said she had brought up the argument that I had made for being allowed to visit the original dermatologist for the sake of keeping the experiment more scientifically accurate without a bunch of human variants (trying to appeal to their "logical" side that all scientists have).
They saw right through it, like great scientists do when examining data, and recognized the scared, whiny patient beneath. I have to have the biopsies before they will say I can be in the extension phase. Hey, it was worth a try.
This was just about all I could squeeze into my worry calendar and then I tuned into the weather channel. Shouldn't have done that. Bad mistake. There's a hurricane coming this way and the big white ice cream cone of uncertainty that has a black line going up the center (the storm's predicted path) had the ending dot for Wednesday at 8AM being more or less right out in my front yard. If you looked close enough at the map you could almost make out the pool in the back yard.
So now the woman who didn't like driving on a major highway (i.e. anything with pavement) on a sunny day now may have to brave the elements to stay in this study.
It really is feeling more and more like a hazing. The gods have found out that I will allow hunks of skin to be carved from my body in order to receive these drugs and so now they are saying "hmmmm, she didn't even flinch...let's see, what else we got? anybody? You in the back, Zeus, what's your suggestion? Oh!! That's a GOOD ONE!! Let's throw in a hurricane and see how she reacts."
This one's name is Fay and if it weren't for Fingolimod and how much I love it, I'd have said "F"s are bad luck for me. The only hurricane that ever *got* me was Francis in '04. We had a bunch of trees down in the back yard, some shingles ripped off the roof, and were without power in the middle of a Florida summer for 4 days.
I'm not really looking forward to Wednesday when the storm comes through...but if they tell me I can go have my biopsies that day, maybe there won't be any other idiots on the road and I can make good time. If you see any reporters holding onto a stop sign while they flail sideways in the wind for the dramatic effect like a flag at full mast, be sure to check out the background. You just might see a gray Dodge Ram 1500 inching past. That would be me, on the way to get these moles cut off.
And look! Besides a hurricane, they are predicting a major paint spill across the south east...or no, that's tropical wind speed probabilities. My mistake.
Posted by Jeri Burtchell (TickledPink) at Monday, August 18, 2008