Saturday, September 13, 2008

No news is good news!

At least when it comes to me and blogging. It seems as tho if I don't have a predicament or dilemma to write about I forget to write.

I left off last time with a cliff hanger and had a couple people write to ask what the heck ever happened. I was going to wait until the fall line up to have everyone tune in then to see how the cast of characters did. Seeing as how my little blog is not being premiered on national television in prime time, I guess I can just go ahead and post what happened now and relieve all the suspense.

When last we left off I was whining about my back hurting from getting Frankensteined and contemplating in hopeful expectation the idea of being Randomized on Wednesday. Later on that day (Tuesday) I got a call from the trial coordinator saying my new "stash" was in and I could come up and get it. As crazy as this may sound, I told her it would have to be the next day. In all my excitement of self-centeredly getting wrapped up in my own made-for-TV mellowdrama, I completely forgot that I had to take my mom to the doctor's that afternoon.

So I drove up Wednesday and got my fresh bottle of Heaven in Pill Form...and a box of shots. DOH! They wanted me to do one more lousy shot before I start the extension. Is this some cruel joke? I already had the Last Shot Ceremony and had mentally prepared myself for a life of never having to poke myself again. DRAT!

"I have to do another shot??!" I said in my most whiny, childlike voice supposing the force of my annoying tone would alone be enough to make her cave and say "Nah, I was just joking, it's a box of popcorn. Enjoy!"

But she was the trial nurse, and she's no slacker. She's studying to be one of the Research people who travels around from center to center putting the fear of God into everyone while checking to make sure they are doing everything by the book. To let me skate on taking the shot, regardless of its most assuredly water-like placebo content, would go against her training and all she is working towards.

While we were debating the shot, I popped the top on the new bottle of pills and swallowed one right there. Ahhhhhh!! The magic of the mind. I instantly felt "right" again. Like it was the final piece in the health puzzle that made me feel normal....must like I imagine a junky feels when they get their fix.

While I was basking in a Fingolimod glow, I was told that Wednesday was off and I would be coming up on Monday the 15th to get Randomized. I don't know why they call it that -- it's anything but random this time as I will take my first honest to God bona fide Fingolimod capsule, never to wonder again if I'm getting the real deal or not. (Like I have any doubt!)

So, Monday I leave at the crack of dawn to make the 2 hour trip to arrive for my dose at 8 sharp. Luckily I'm a morning person.

I'm packing a cooler and bringing a book, an MP3 player, a couple dvd's and anything else I can think of to entertain myself.

I wish they'd just let me leave and come back on the hour. It's right smack in downtown (just about) Jacksonville and there's lots of stuff to do there. Seems like the only time I am ever in downtown Jacksonville it's not to go to museums or art galleries, but to go to the hospital. *sigh*

I'll take my camera, at least, and see if I can get some of the players to pose for blog pics....or take a couple of me being bored.

Until Monday... thanks for playing along. I appreciate that someone out there cares.

Tuesday, September 9, 2008

My Impression of Frankenstein

I finally had my appointment for The Excision with my dermatologist yesterday. Having never had an excision, I imagined it would be the same as the biopsy only take off a little more.

Imagine my surprise when I saw the tray full of sharp things, pokey things, and what looked like a miniature cattle prod.

I lay face down on the table and my shirt was hiked up just enough to expose my midriff. As places to grow moles go, I guess this was pretty convenient. The tray full of torture equipment was right next to my head at eye level to evoke maximum anxiety. It worked like a charm.

The nurse, after watching me squirm around trying to get comfortable said "I'm sensing a LOT of anxiety here! Your imagining too much; it's really going to be nothing."

I said "Nothing? Really? Then I can go now?"

She said, "Take a few deep breaths in through your nose and relax."

She went out of the room and came back with a small blue box about the size and shape of a car battery charger. It had wires coming out of it that looked a little like a jumper cable. She placed it under the table and plugged it into the wall. I could see all this by peering through the small gap between the table and headrest.

Then she placed a metal plate on the table that was hooked to wires that led to the box. She instructed, "When I tell you, put your had on the metal plate."

I looked at her like she was a three headed monster who wanted to eat me and said "Wha-what is that th-thing?"

"It's a ground plate for..."

"La-la-la-la-la! I can't hear your! La-la-la-la-la! Honestly, the less I know the better. If I ask about any of the sharp or pokey things or the wood burning tool, just ignore me, k?"

Why do people laugh at me? I guess it's the way I phrase stuff, and maybe the fact that when I get stressed out I deal with it with humor. I was a freaking stand up routine laying on my stomach at this point.

The doctor came in and started saying stuff in code to the nurse and scribbling around in my folder. I think they were playing Hang Man, or Tic-Tac-Toe, but he wasn't giving her a chance. He was cheating, I think.

I cleared my throat and spoke up, "Doc, I emailed your brother (my neuro who is the lead investigator in the clinical trial -- how convenient!) and asked him to help me get these results expedited so I can be assured to make the deadline for the extension phase."

Doc said "Yeah, we spoke over the weekend. He started off by trying to explain who you were as if I didn't know and I cut him off saying 'I know exactly who you mean'".

(Geeze, am I that much of a pain in the butt that I leave a lasting impression?)

I said, "Well I have instructions from the trial coordinator. She called this morning and told me that I need to get you to write a note saying you excised the mole with clear margins and it's benign, and write this on your Rx pad and sign it."

He said, "I'll gladly write the note...after I get the pathology back."

I said, "Noooooooo!!! I have to have it today!! The whole reason for the note is to circumvent having to wait for the pathology. If I get the note, I can start the extension phase next Monday!"

Sensing my panic and wanting to avoid a scene right before a surgical procedure and perhaps catching wind from the nurse about my Elevated Anxiety Level, the doctor caved and said "I'll write the note."

Whew! I was feeling better already.

Then came out the tools of torture. Me thinks perhaps I should have strategized more about the opportune moment for ticking my doctor off, but now it was too late. Fortunately, the nurse had jabbed me in the back enough times with numbing agent already that all I felt were the tugs and jerks at my flesh.

Then this buzzing noise started and I thought I smelled something foul, like burning human flesh. And I had an odd sensation the entire length of my body...kinda like, what's that feeling? Like being shocked?

As if on cue, the doctor says "Do you have your hand on that plate?"

I say "no, she never told me to put it there."

"Well, put it there!"

Then I felt (a.k.a. imagined) my arm cramping up, a buzzing sensation and my forearm tingling as if being electrocuted. I mentioned this.

The doctor playfully said, "You're getting a little carried away. There's nothing at all in this room that will remotely hurt you in any way."

I said, "I beg to differ as you cut, cauterize and sew my back, doc. The only reason it's not hurting now is because I've got a turkey baster full of Novocain crammed under my skin. I bet it hurts later!"

He laughed. You really shouldn't try to make your doc laugh while he's sewing. I did request that he embroider my initials and he said he could do that. As many stitches as he used, he either honored my request or my incision is about 3 feet long. (Nice trick since I'm barely over 5 feet tall...I must be long waisted.)

He got all done, I lived to tell the tale, and he wrote the note. He refused to say "benign" but instead wrote "not malignant". I didn't know there was a difference. I guess there's shades of gray in between or something but I always thought if a doctor told you "It's not malignant." and you said "Whew! Then it's benign?" that he would in turn say "That's correct." Who knew?

I walked out of there with a backpack sized bandage on my back covering the area where once had been a cute little brown speck, and I did my best Frankenstein impersonation waddling out of there. I got a laundry list of care instructions and a script for Bactrim which is one of the very few antibiotics my body hasn't decided to grow hives or swell my tongue over.

I got in the car and drove straight to carry my precious cargo, The Note, to my clinical trial coordinator. I felt like I had the Golden Ticket from Willy Wonka or something. It was my entry into the No Kidding This is IT part of the trial where I don't have to wonder, "Is it Fingolimod or is it Avonex? Only her hairdresser knows for sure."

I'm just hoping the lack of the proper verbiage...where they were looking specifically for the word "benign" and it was hiding right there in plain sight in a "not malignant" costume wasn't going to poke holes in my bucket of pills. But, hey, if I didn't worry about that, I wouldn't be doing my job.

I find out at the Research Department that they were trying to score me some more drugs to keep me from going into withdrawals and robbing a bank to get my next fix. They said Novartis was having to overnight them because the research medicine cabinet was empty of the particular poison I'd been ingesting.

Depending on what all they included, I might be invited to come up as soon as this Wednesday to spend six hours getting my vitals checked hourly (a.k.a. the Extension Phase Randomization). Otherwise, it could be next Monday. But either way, I'm in the long as Novartis understands -- and accepts -- not malignant as a good thing.

I'm giddy with excitement and my back is hurting like someone used a post hole digger on it, but everything seems to be falling into the place I wanted it to.

For all you well-wishing prayer sayers out there...THANK YOU! It really means a lot to me and while I'm not of the church-going organized religion type believer, I do believe, and I do have my communion with the Almighty on a regular basis. Yesterday he rode shotgun on the way to Jacksonville and I talked his ear off about how grateful I was for the way everything was seeming to work out.

He didn't say much, he just smiled and nodded a lot, but I could tell he was happy I was happy.