Wednesday, December 3, 2008

My day is totally kicking ass! Bring on the FINGO!

This is a good day. The sun is shining on this b-e-a-utiful Florida day and I'm back to feeling pretty good. I saw the neuro today and he gave me the thumbs up to join the Fingolimod trial taking place nearby. I thought for sure he'd be cross with me for quitting the Copaxone (I have to wash out for 3 months before starting the trial.), but he was totally into it. Turns out he used to do some clinical trials himself and used to chair the IRB (safety committee for medical research) at the hospital where we work. The nurse took a look at the lumps I was getting from the injections and said he would probably want to discontinue the Copaxone anyway. I don't know why really but I fully expected him to tell me I was a crackpot for risking myself with a un-FDA-approved drug and would chastise me for skipping the last two weeks of Copaxone. Instead, he was really supportive and gave me some good info about how clinical trials work. This encounter reaffirms my choice in neuros and confirms my addition of him and his staff to my Xmas card list.

I can't wait to get started in the trial. I know it's ridiculous, but I feel like I'm carrying on a family legacy by participating. My grandfather did a lot of medical research and invented a lot of really common medical products. As common as Hep-locks and prosthetic hips. My whole life my mother would occasionally get this weird look on her face and say, "You are JUST like my father." I never knew if it was a compliment or insult; they sometimes had a strained relationship. But I got to spend some time with him before he passed away, and I think she was right. He and I were/are similar in our analytical-ness and way of communicating. Plus, he was a dirty old Englishman and I think I may be the only person who really appreciated his sense of humor. I visited him once in rehab after a severe foot injury (diabetic neuropathy) that he got by driving his scooter like it was an ATV. I told him I was going to the store and asked if he'd like me to pick up anything. (He loved sugar-free hard candies.) So he says in his thick south UK accent, "Yes, love, could you get me a new ass?" And sucker that I am asked, "What's the matter with your ass?" And straight-faced, dry as hell he says, "It's cracked right down the middle." He got lotsa giggling and eye-rolling from me, but the nurse didn't even crack a smile. So either only I think that shit's funny, or she couldn't understand a word he said. Either way, he was a great guy and I know he would totally get behind me on this drug trial though he'd also pick apart the trial and riddle me with questions. He died before I was diagnosed but I know his respose would've been, "That's shit luck, that," and never have treated me any different. Might've even forgot all about it, or offered me his pogo stick (cane). He stayed savvy till the very end though and his will included donation of his remains to medical research. He was the one who convinced me to seek a career in medicine and radiology would be best because "It's all knob-twiddling and button-pushing. You love that stuff. Plus there's tons of advancements to come in the technology to keep you from getting bored. And since you live in Florida, where people go to get sick and die, you'll always have work." Sage advice from a very practical man.

And the second fantastic thing that happened today happened while I was in the shower. (No not that! Cheeky!) I'm in the shower and my hubs pops in and says, "Hey, a friend stopped by and needs to use the toilet. Do you mind if he comes in?" (We only have one bathroom.) And I'm wondering who it could be that my jealous husband trusts to be in the bathroom while I'm naked on the other side of a flimsy curtain and I hear, "Hallooo Julie!," in the sweet voice of my hubs' best friend of 30+ years. He's been away indefinitely on the other side of the world for way too long, and surprised us by coming home at last. He and my husband have the same weird-ass name (They're both named Shiva, after the Hindu god of destruction. Other Shiva used to date a girl also named Julie. Lemme tell ya, there was major confusion on the phone and lots of jokes about going into the wrong bedroom.), and are the reason "brotha from anotha motha" is the most common cliche in use around here. He is truly family, and our life is better when he's around. Anyway, I was so excited I had to fight the urge to jump out and hug him naked and dripping! Instead I just shrieked, "I love you!" and finished up as quickly as possible. He's been gone so long that it's dream-like to have him back in our presence. He is easily the luckiest sonofabitch I've ever known and hopefully it'll rub of on my Shiva in the way of some profittable employment. If not, I don't care, I'm stoked!


Abigail said...

YAY! Not that life usually cares, but you deserve good things! smooches. (and thanks for the blog link, real correspondence coming)

Merelyme said...

hello...i found your blog through...hmm...i have forgotten now. MS makes me forgetful. anyways...nice to meet you. i am very interested in the fingolimod after my neuro had talked about it. i will be eager to see what you think about it.

TickledPink said...

You are gonna be soooooo happy you decided to join the trial. I've been in one of them for Fingo for over a year now and (knock wood) not a peep of a relapse yet.

I, too, quit my Copaxone (after being on it on and off for 8 years) and my neuro presented me with the clinical trial option.

I've been blogging it since the start, so if you want to read about all the testing and stuff, go to the beginning of my blog at

Best of luck!!

pUNKrOCKfairy said...


Thanks for the link, but I've been reading your blog for a while. :) It honestly helped me make the decision to get in the trial. Now I'm super stoked about it, and I'm sure I'll be riddling you with questions in a couple month when I start.

karen wynder said...

CONGRATULATIONS! on the friend thing definitely but also on the clinical trial....that is great news and i hope it works out better for you than the copaxone. p.s. your family stories are hilarious....i know i will be thinking of that story for a few days and still laughing .... thanks for the smiles!