Friday, May 23, 2008
Well, having finally gotten the day correct, I made it to my Visit 9 checkup. This was the shortest visit of the entire trial and only involved blood draw, vitals and the EDSS test.
The same guy who evaluated me last time 3 months ago got to have the honor of doing it again. He remembered not to stand in front of me when wacking my knee with the hammer thing. I can laugh at a joke, slap my knee, and kick an innocent bystander without even knowing I'm going to. My reflexes are that strong.
He poked me with the sharp-on-one-end/dull-on-the-other thingie and I messed up some of those answers but not many. My eyes did the little jerk while trying to track him moving his pen, and he said if I were stopped for driving under the influence I would have passed the heel to toe walking just fine.
Then I got to do the 500 meter walk. Pacing the hall 23 times. At one end, the receptionist was gone and the desk was empty with the lights dimmed. At the other end, several ladies were working at their desks and discussing what they would have for lunch. They were at the Even End. The Odd End was the empty one. I was in charge of remembering which was which and what number lap I was on. The doctor jumped out into the hallway to keep pace with me briefly to ask a couple questions that he'd forgotten to cover about if I had any strange sensations etc. He then asked me the lap I was on and for a brief moment I was horrified that I had completely drawn a blank. "Fourteen!!" I finally blurted out in sudden relief. "Sorry for screwing you up," he said.
After that I said my Even lap number at the wall out loud so maybe someone at the desk would recall my last number if I forgot it. Short term memory loss is a freaky thing. I don't like it one bit.
When I got done with the test I walked back to the exam room and collapsed in the chair, exhausted. He looked at the clock and said "thirteen minutes! Very nice!" Apparently I had outdone my best record, and I attribute it to the fact that I didn't end up limping halfway through like I have in the past. He noted that as well, without my bringing it up.
I asked if I could know my score and he said that he couldn't tell me due to the "blind" nature of the study. Things like knowing my EDSS could affect the way I felt about the trial and have a "placebo effect" or something. But I asked him, trying to keep a straight, serious face "you would let me know if I scored a 10, wouldn't you, Doc??"
He wasn't sure what to think until I burst out laughing and said "Cause I'd like to know if I were dead so I could go lay down now." He eased up.
He actually did say "when you get above the 5's from 6 to 10 is greater and greater disability and eventually confinement to bed and death. I can tell you that you are below a 6. And that's all I'm going to say."
I asked him if the fact that I was walking without a cane was a giveaway or something.
All in all it was a short and sweet. I got my new meds, the supply of shorter needles (because the ones that come with the Avonex are big honkers that look like I could go totally through my thigh from one side to the other if I actually dared to use them), and then I was on my way.
The traffic gods were with me and I only caught one red light on the entire trip up there, and 3 on the way back. For a trip that takes an hour and a half, that's not too bad.
Visit 10 is in 3 months and will require an all day stay. Then, after that visit, I go into the extension phase and have to do the 6 hour check-you-heart-rate-every-hour visit. Should be fun. I'm going to remember to bring a better movie to watch than Anchor Man. The movie was more torture than all the medical stuff.
Posted by Jeri Burtchell (TickledPink) at Friday, May 23, 2008
Monday, May 19, 2008
"THIS IS ONLY A TEST"
The following is a test of the clinical trial updating system.
I SWEAR the last time I talked to my trail coordinator she said she couldn't schedule the EDSS test for the 19th, so I would have to come on the 23rd for that. I ASSumed that we were still on for the 19th (today) for the rest of all the usual testing.
My sister took the day off so she could drive me since the drops they dilate my eyes with are pretty heavy duty and leave me seeing as if looking through wax paper sunglasses.
All went as planned. Cooler packed? Check. Son roused, dressed, fed, sent to school? Check. Self showered and clothed? Check. Used syringes packed? Check. (How many have THAT one on their check lists?!) Everything went too smoothly. Even "rush hour" through Orange Park, FL on Hwy. 17 couldn't stop us.
We had a nice 1.5 hr. ride there and had to park On The Hill in the Overflow Lot. Arrrrg!! I hate that trudge, but we had left so early (i.e. on time) and got there so early (i.e. no glitches = early arrival) that we had plenty of time to stroll to the towers. We even went up the right tower the first time for a change. (It's a 50/50 chance and I usually screw up because I can't remember).
I sign in and we wait. Momentarily a bunch of happy people burst forth from the door I'm waiting to enter. All employees. I say to my sister "Nice to see happy people coming out...you don't want to see grumpy ones coming out if you are about to enter and get poked and prodded."
We wait only a few minutes before the trial coordinator comes out. I'm not sure what her native language is or where she is originally from, but she has a lilting, beautiful way of speaking English and she comes to the door saying "Hi, Jeri! One moment please." She disappears and we joke about how maybe she forgot I was coming and they are rushing around back there scrambling to get me squeezed in.
Turns out we weren't far from the truth. She probably wasn't scrambling, or even frying or baking for that matter, but she was confused.
Apparently I had misunderstood when we last spoke by phone. I had been enjoying the musical quality of her voice while she had been trying to relay that my ENTIRE APPOINTMENT would be changed to the 23rd, and the 19th was no longer a go.
Like a teenager wagging her head (to the music she has plugged into her ears) as you are thinking they are in complete agreement with the chores you just laid on them, so I, too, must have been head wagging to her voice and not listening to the words. I just heard "Blah, blah, blah, Jeri. Couldn't fit EDSS in on 19th. Blah, blah, blah. EDSS on 23rd. Blah, blah, blah, blah. Okay? See you then."
I try to plead my case saying "Today I get the eye exam and the pulmonary function test, and all the other junk." She says "No. On visit 9 there is no eye test or lung function test or anything else. Just the EDSS, blood work and vital signs."
So I've gotten my sister out of work and wasted a gazillion dollars in gas for absolutely nothing.
We scrapped the packed lunch (since setting the fruit salad on TOP of the tuna subs flattened them to an unappealing thinness) and ate at a Crispers in Orange Park. We had to have a reason to be out driving to Jacksonville for no reason, after all.
This concludes the test of the clinical trial updating system. Had this been an actual clinical trial update, you would have been instructed on where to turn in your area for news and information.
We now return you to your regularly scheduled program.
I'll have something to report on Friday ... even if it's "No, Jeri. We discussed the 23rd. We moved the appointment to blah, blah, blah. Remember?"
It was a catchy tune, something I could really dance to. I gave it an 8.
Posted by Jeri Burtchell (TickledPink) at Monday, May 19, 2008