Tuesday, September 15, 2009

Extension Phase 1 year checkup -- part 2

Yesterday I was supposed to drive back up to Jacksonville to finish up my one year anniversary checkup for the extension phase of the Fingolimod trial. All I had left was the dermatology visit, the eye contrast chart, and the MRI.

Piece of cake, I thought.

I need to quit thinking that because inevitably it's NOT a piece of cake but rather a piece of dog poo I mistook for a piece of cake.

I get in the exam room at the dermatology office, waiting for the doctor in my backwards paper shirt and the pathetic little paper blanket draped over my lap.

He's just supposed to give me a quick once over and double check the scars of my last visit to his office where he decided my cute little beauty spots on my lower back needed to be excised to see if they were something more ominous. They weren't.

He comes in and shakes my hand and starts his exam by looking at the backs of my ears. That's odd, I thought, but didn't say out loud. I guess he's got to start somewhere and since I have a LOT of hair, maybe he thought they might get lost and forgotten all up in there (as they say down here in the south).

Ears; check. Neck, face and shoulders; check. Left arm; check. Right arm...

"So what does the study do if I find something I think needs evaluation?" he asks casually.

"They pay for it because that's why they sent me to you," I say. Why do I open my mouth?

"How long have you had this blue spot on your arm?" he asks as he tried to grab it and pop it like a big pimple or something.

"That thing?" I say, "at least a few years. Longer than I have been in this study, so it's nothing new."

"Does it hurt when I mash it like this?" he asks as he squeezes with all his fingers and thumbs.

"It doesn't normally hurt," I say, "but I can't be certain what you're doing wouldn't be hurting no matter where you did it."


Ever so casually he says to his assistant, "Get me a blade and a punch kit. We're going to have a look."

"EEEEEK!" was all I could say.

"I should know better to come here! Every time I go away, I leave a piece of me with you." (ala that Paul Young song).

He just laughed and said "What can I say? I like to collect souvenirs."

He buzzed through the rest of the exam and next thing I know I'm getting 3 needles of numbing agent circling my blue spot (more of a subcutaneous lump actually) and draped with a steril cloth with a hole in it.

Since it was the back side of my upper right arm, I had to twist my arm across my torso to allow the good doctor easy access with this Dremel tool kit.

I looked away at first but then noticed a bloody scalpel being handed from doctor to nurse across my body. Time to squeeze the eyes shut tight.

It took about 10 minutes tops to cut me open, gouge out the offending blue lump, and then sew me back up. It actually seemed like a fortnight. (Not really, but hey, how often do you get to use the word "fortnight" in everyday conversation?)

He said something that sounded like "Diagnosis: Antidisestablishmentarianism-oma" to the nurse, not really directing it at me.

I then said "hey, can you write that down so I can show my trial coordinator because I'd hate like heck to get the wrong 'oma' when I tell her."

He obliged me and after scribbling the name of the lump that heretofore had always just been called "Old Blue", he disappeared out the door leaving me to change from the sweaty, rumpled mess my paper clothes had become into my more durable cloth attire.

I looked at the paper and the word was a regular tongue twister. Here I thought "Fingolimod" was a mouthful.


(ăn'jē-ō-lĭ-pō'mə, -lī-)
n. A benign tumor composed chiefly of fat cells and containing an unusually large number of vascular channels.

When he first gouged it out of my arm and held it aloft at the end of his spear (I'm guessing here because my eyes were shut tight), he announced "Yeah, it's nothing to worry about. We'll send it off for path, tho."

I asked the nurse if he was cross stitching his initials into my arm since it seemed to be taking so long to close me up.

So, now I have this huge patch on my arm and I have to wait until the 24 hours are up at 11 a.m. before I can unveil his masterpiece of surgical excellence. I hope I don't pass out. I'm not much of one for movies like Frankenstein, and there's no looking at this trying to convince myself it's only movie magic -- don't be afraid.

And that was only the BEGINNING of my day.

I drove from there all bandaged up like a mummy (ok, well, I had to wear my short sleeve hiked up a little in order to get any sympathetic glances at ALL) and drove over to The Towers as I so affectionately refer to them now.

My trial coordinator was waiting for me and burst into giggles when I told her not to send me there many more times because he's whittling away at me so much I'll eventually disappear.

She had the contrast eye chart for me to do.

Black on white was just fine. Gray on white was a little more troublesome, and the slightly shiny letters on white were gone. She was pointing at the chart with her pointer and I was saying "there's nothing there."

After fiddling with the position of the chart and the blinds on the windows to alter the ambient light, we tried again.

This time I did better, but still a dramatic change from last time. Had it not been for the fact that this was the new deviation from the standard practice of the actual eye doctor performing the test in her office, I may have worked myself into a panic thinking I was going blind (even tho I could see just fine).

But since the eye doc is such a busy lady, my trial coordinator thought she'd help out by doing the eye contrast tests in her office instead.

So much for the constants in the science experiment that has become my life. I asked her to please mention to Novartis that we aren't conducting the test in the normal place and the lighting is different so they don't boot me from the trial and give me a candy striped cane as a parting gift.

After that was over, the only thing left was the MRI. I was scheduled to be on the same machine as always since the start of the trial so I knew it was the 4 foot tube and that it's no big deal.

At least it wasn't any big deal last year when I shot the tube with no drugs to calm me. I recall I was so relaxed I nearly fell asleep.

I guess yesterday was an exceptional day. I got in there and laid down on the table to get ready to slide into the tube and I just started hyperventilating.

It didn't help that the technician was trying to calm me by telling me all the stuff that was NOT going to happen to me. Stuff I may not even have been worried about was now thrust as actual scenarios into my conscious thought...

"Don't worry...it's not like it can crush you or anything."
"And there's plenty of air in there, you won't suffocate."

Did she really wonder why I mashed that panic button as soon as she left the room before the MRI was even out of neutral??

I had a washcloth over my eyes, headphones closing me off from the world and gripping my head, and a bird cage slid over my face. Then I was shoved into a paper towel tube and a muffled voice was saying "you're doing fine! just relax...nothing bad will happen, I promise."


"You want to get out?"


"Ok, that's fine. Tell your trial nurse you need some meds to do this and we'll reschedule."

"Ok, I'm so sorry. I didn't mean to waste your time. I just can't do it. The stress of having my arm gouged out unexpectedly a couple hours ago must be why my lunch wants to come back up."

So I went back to my trial coordinator who looked at me with a puzzled "how can you be in the MRI machine right now AND be standing before me?" look.

"I couldn't do it. I gotta have some Xanax, sorry."

"That's ok.... but..."


"Well, didn't you do it last year on the same machine without any drugs?"

"What can I say? I'm perfecting my hypochodria in my old age," I shrug.

So now I have another MRI scheduled for the day I have to come back up to get my Frankenstitches out.

Stay tuned for Extension Phase 1 year checkup -- part 3, or

The never ending clinical trial checkup.

I go back on the 24th.

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