Monday, February 25, 2008

The Halfway Mark

Last Thursday was the halfway mark in my clinical trial and for some reason I've been so melancholy about it that I didn't even want to blog it. I just don't want it to end and there's always the "what if" about whether it will get approval or not. I can't imagine that it won't but I fear if I don't hold my breath and cross my fingers, knock on wood and any other superstitious thing I can think of doing, I might jinx it or something.

Anyhow... the checkup went smoothly. My sister drove me again because of having to have my eyes dilated for the eye exam and OCT. My first appointment was at 9 am for the Pulmonary Function Test, and the last appointment of the day was going to be the OCT at 1 pm. I don't know why I expected it to all go smoothly and as scheduled. It never does.

I'm still getting over this head cold that decided to make a home in my chest. It only bothers me at night and first thing in the morning with a gagging cough that threatens to push my lungs out my mouth. I have started sleeping in my lazy boy all night just so I'm somewhat inclined. If I lay flat I cough nonstop. I was worried that my breathing test would be skewed because of this, so I made sure I told the guy doing the test.

He's the same guy who always does the test and after he did the first part of it (where I'm sitting in the plexiglas box) he said "you actually did better this time than last time since you had a cold last time."

Geeze! I'd forgotten that! Anyhow, he said that my lungs were normal just like they were last time.

Then it was off to go back across 4 lanes of traffic to get from the hospital to the Towers. For the last 7 visits I have walked there, risking life and limb. On this occasion however, the tester guy asks if we knew about the Orange Shuttle. Huh?? All this time there's been a shuttle I didn't know about?

He walks us out the back entrance to the hospital to an area with an orange sign that says "Orange Shuttle Stop". He leaves us there with the warning "Don't take the blue one because it goes all over town. The orange one goes from here to the Pavilion, to the towers."

A few minutes later, here comes a big white bus (he neglected to mention WHITE) and we just stood there as it stopped. No other people were at the stop but my sister and me. We tried to wave the lady driving the bus on, but she just pulled up farther and opened the door. "What are you waiting for?" she asks. "The Orange shuttle, we reply in unison."

"This IS the Orange Shuttle, get on."

We say "no it's not, it's white." (Like because she's inside, we are compelled to describe the outside to her so she has a clue). She rolls her eyes and tells us she keeps telling them she needs something orange to stick in the window so people aren't so confused. Turns out they have 4 orange shuttles and 3 of them are white. Go figure. We get on.

Next stop is the research department to see my trial nurse for the blood work, urine test, MSFC, EKG, and exam with Dr. Kantor.

The MSFC, I'd forgotten all about. It's the test with the dreaded Numbers Guy. See this post for the horrors of the first MSFC exam. The numbers guy stumped me again and I was left sitting and listening to him rattle off numbers for 3 in a row somewhere in the middle. It was those 7's and 9's again. You have to add 2 numbers and say the result and wait for him to say the next number. You add that to the last number he said while trying to forget the previous total which you just said out loud. Sound confusing? Try playing the game. Just as last time, the practice test went perfectly. I waited for the real thing to screw up.

Then, when that was over, I did the peg test and it seemed a little harder this time. My hands just don't want to behave themselves. Either that or the pegs shrunk since the first time. I actually had one peg stick to my sweaty fingers as I went to drop it in the bowl. It release when I had my hand, mid-swing, over the table. I lost precious seconds scrambling for it and nearly knocking it on the floor. If this is a test of how clumsy one can be, does that mean I passed?

Speed walking came next. I was so excited that, between last time I was tested and this time, I have actually retaught myself to run, I just had to ask...

"Is it okay if I run instead of walk?"


"no really."

(more laughter, then a pause)

"you're serious?"


"No, honey, it's a walking test. Just walk as fast as you possibly can."

So I walked the way the kids at school walk when they know they aren't allowed to run but can't help pushing the rule a bit by speed gliding. I'm sure I did way better this time than last.

Next, the blood draw. Two little vials rested next to the rubber tourniquet, alcohol wipe and pokey stick. I tried to go to my Zen place and not think about it. I have small veins that wiggle and roll and hide when someone tries to prick them. Last time it took the one lady six tries before she went and got Geri (a name I can remember, yes!) who is the Master Sticker. She got in right on the first try and told me which vein and the angle it lies at in the left elbow area for future reference.

This time I say "well, if all else fails, you can go get Geri."

"Um, Geri got another job."

"Crap! But no, that's fine, you'll do just fine, I'm sure! No offense or anything. By the way, the vein's right here, running at this angle."

Thank God she left me with that tidbit of info before moving on to bigger and better opportunities. My nurse stuck me good the first time. But, right before she did, she said "Oh, I forgot to get the Kit out." She brings out this box and opens it to expose another several dozen vials (actually only 4 more, but once you've reached 6 vials they might as well get the last couple of drops you have left in you while they're at it). I nearly fainted, but I stayed strong.

I still needed to get my EKG, see the doctor, and fill out the PRIMUS paperwork. (That's a questionnaire about how MS affects your life). But there was no time. I was running late for my eye exam. She said "go to your appointment then come back for the rest of this stuff." So I did.

The eye exam went great. No changes to my vision and I left there all blurry eyed, gripping my sister's arm and feeling like Mr. Magoo. We went to the truck and had the lunch we packed while waiting for time to go have the OCT.

I love going for the OCT after seeing the eye doc because my eyes are already dilated and they bump me to the head of the line while the other poor saps are waiting for their drops to start working.

The OCT went well. I kind of enjoy watching the spirograph-like designs and the challenge of not blinking. I never have the urge to blink until someone tells me not to. Kind of like "Don't swallow." when you are having a C-spine MRI. All you can think about is to wonder if anyone every drowned in their own saliva.

We ended up the visit back at Research where I got the EKG and they scheduled a future appointment with the doc because he wasn't going to be able to squeeze me in that day.

The EKG went well. I heard the nurse and one of the doctors looking over my printout.

"Look at this."


(my ears perk up and my heart starts pounding and palms sweating in anticipation of bad news.)

"Have you ever seen such a perfect EKG?!"

"Can't say as I have. That's a beauty. Just look at that spike."


That was my excitement for the day and lucky I wasn't still strapped to the machine or they might have changed their tune.

I was loaded down with my 3 boxes of new shots and my 3 bottles of pills and sent on my merry way.

Everything's looking good so far. Keeping my fingers crossed that the second half of this study is as successful as the first. I'd love to say I could barely remember my last MS attack -- and not have it be from cognitive dysfunction. :-)

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  1. Oh! I completely neglected to mention that the nurse said I will be invited to stay on the meds after the study is over. She said that until it is either abandoned as an MS drug (highly unlikely) or reaches the market after FDA approval, I will get the drugs for free. She said that when it becomes available for others to purchase, then I'll have to figure out some way to buy it.

    Her estimate was anywhere from 3-5 more YEARS! I really thought it was going to be sooner, but 5 years of free meds is fine by me.

    Yes, I still have to do the shot once a week. Which reminds me. I need to go do my shot. I made my *day* Monday since Mondays suck. Now they suck for a reason and I remember my shot just fine. :-)

    Good luck to you, too, Maggie!

  2. 8 months in, I've grown to hate the EKG... because of a problem you (probably) don't have: I'm a guy, with hair on my chest, so the electrodes don't stick very well.

    I've recommended to the nurse that she talk to a vet, to see what they use on gorillas, but she wouldn't take me seriously, for some reason. Next time I'm shaving, in advance!

  3. HAHAHA Brian! Good one.

    I actually make sure I shave my legs in advance of going. I had an embarrassing moment the first time when I was totally unaware of the leg electrode they were going to attach. I was left explaining "winter leg syndrome" to the tech.

    This time I prepared in advance and they nearly forgot to do the EKG. When she loaded me up with the new meds and said "there ya go!" I said "what about the EKG??" She looked in the book and said "oh! You're RIGHT!" And I said "I didn't shave my legs for nothing! I'm not leaving here without an EKG!"

    I know, I know. Too much information.

    Call a zoo and see what they say about giving gorillas EKGs. I bet they just sedate them until they rip the sticky pads back off.

    I feel for ya!

  4. wow, i was not aware that it would take like 5 years before FTY will be available for ms patients outside this clinical trial! the mta supervising the study told me about the extension phase last time i was there (i had my half year checkup on feb 15!). so if i can participate in the extension i only have to give myself another 24 shots and then i'll be done F-O-R-E-V-E-R!


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