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 club...as 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.

The Plan

I made a persistent pest of myself along the lines of a mosquito that buzzes in your ear but narrowly avoids the deadly swat each time. It paid off. I finally got to talk to a human. However exasperated with me she might have been, she was professional and didn't show it.

I got my appointment for the flea-ectomy for this coming Monday. My social calendar (otherwise known as the noaa weather chart) shows I'll be free that day as Hanna should be bothering the nice people in New England by then while Ike will be fashionably late. Perfect!

That will be September 8th. By my calculations, the 16th should come on or about 8 days from then. (I didn't mention I'm a mathematical geenyus, did I?) When I asked if the pathology would take a week, Tiffany said "Oh, no! It shouldn't take that long!" (famous last words).

So now I wait. I think on Monday I will beg the doctor to throw his weight around and tell the lab "STAT!" Why can't I have House's team of doctors?? They do their own lab work and con and connive to get results from other tests within the 60 minute confines of the show. **sigh** I mean, my life's a soap opera anyhow...what with all these cliff hangers.

I have a good feeling. I just hope I can maintain that good feeling after Sunday...when I take my last pill.

Drama is my middle name

Apparently.

I've been waiting ever since a week ago this past Monday to find out the pathology on those 3 flea specks I had biopsied, and I finally get a call yesterday. It's the doctor's nurse calling to tell me that all 3 were "atypical dysplastic nevi" meaning they aren't cancerous but could someday evolve into cancerous moles.

She then said that two of them were cut completely off while they didn't quite get all of the third one, and she wanted to schedule the "excision". I paused for a beat as I took it all in. Especially that last part because the word I heard was "exorcism". That'll make your head spin!

Anyway, I ask her if "atypical dysplastic nevi" were benign creatures and she put me on hold to go ask the doctor. He speaks their language I guess because she came back saying they might someday have turned on me, but as they were, under the microscope, they had come in peace.

So I call the clinical trial coordinator, all excited with my news, and she said she had the path report in her hands and was looking at it. She was confused because nowhere on it did she see the word "benign".

She fired off an email and copy of the path report to Novartis to let their safety control guy take a look and decide if it's safe to let me enter the extension phase.

I get a call this morning and as it now stands I have to have the excision done and have the path report come back saying they got it all and that there was no malignancy....all before September 16th.

So here we go again! I have left a message on the dermatologist's head nurse's answering machine saying it's critical I get this cut off me and the path back A.S.A.P. so I can stay in the study and that I will go to any office (they have 5 and the doctors travel between them like nomads) and it can be any time (NOW preferably).

The clock ticks, I sit and wait. I feel my very LIFE hangs in the balance here, or at least my quality thereof. I'm a Fingo Head and I'm not ashamed to admit it. It's my drug of choice and in 4 more short days I will be OUT of Fingolimod.

From what I have heard and read, it's okay to go without Fingolimod for up to 7 days. If you go 8 days, however, you have to be closely monitored for adverse cardiac events as it will once again mess with your heart rate and/or blood pressure.

Just the stress of all this being yanked around about a couple of skin specks has been enough of a test of my heart rate and blood pressure. I can't take much more.

Oh, and there's 3 tropical storms headed this way and I will have to worry about driving around in them again. That little girl on the salt box sure got it right.

Biopsy: an inoccuous name for human exploratory drilling

Good news, they didn't strike oil! Or maybe that's the bad news considering gas prices these days. I could have been my own energy source.

Instead, they struck blood. Plenty of it! Running down my stomach and down my back simultaneously. I wish I'd had someone there with a camera so I could play dead while bleeding from front and back. It would have scared the crap out of Mom. Sorry Mom! You know I wouldn't have done that to you, but it sounded funny.

So, I get called back and meet the doctor who happens to be the brother of my neurologist. I haven't decided which one is the evil twin (not that they are even twins), but this one looks more like George Clooney. Both of them are the nicest guys you ever want to meet -- their mother must be so proud!

He tells me his nurse will numb me up and then we'll get started. Fortunately all three moles are located at roughly the same vertical position up my spine. The one in front, an inch or two above my navel on the left, and the other 2 within a half inch apart from each other right along my spine in the back. All I had to do was hold my shirt up and expose my midriff. No clothing removal, however I did take my sandals off to get more comfy.

The nurse came at me with this little baby of a needle citing her rehearsed speech meant to calm my fears. I laughed and said "is that all you've got! I stick myself in the leg once a week with the granddaddy of that baby needle!"

It didn't even hurt, but then I guess when it's filled with numbing agent it wouldn't tend to hurt, would it? Why don't they put a little bit of that in Copaxone needles? That stuff BURNS! A touch of Novocain would be humane, don't you think?

It only took a couple minutes before the doctor came back in and hovered close. I looked at the ceiling while he did something I couldn't see or feel. Then he said "all done!" and he was.

"That's it? Wow! That was fast and I didn't feel a thing!"

I asked if the family had any more doctors I could use, like a dentist or GYN or something. He just laughed and said "Fresh out of doctors; that's all we had."

I asked if he would be doing the pathology on them and he said no. I stressed the imperative, urgent need to get the results STAT. (I thought he'd understand the lingo if I put it that way, and besides, how many times does a patient get to tell a doctor "STAT"?) He said he'd send it to Shands Jacksonville and let them do the pathology. Fortunately, since the research dept. for this study is also at Shands Jacksonville, my trial coordinator can now pester them until they hurry up and say "Benign".

Which is what they'd better say, because I found out yesterday that Novartis will take nothing less for an answer. If these spots contain even one "atypical" or "questionable" cell, I'm kicked to the curb like yesterday's trash.

I can't let that happen. It's my only social outing to go to the study center and visit with all the nurses and doctors. If they take away that I'll have no reason to ever leave home again.

Worse, I will be feeling like the wicked witch of the west after they poured water on her. Take my Fingolimod away and I'll probably melt into a puddle and disappear, too. Perish the thought! I can't control what happens. The moles are now out of my hands, or off my skin, or however you want to say it. The results are going to be what they are. All I can do is send "benign" thoughts out into space and hope the words ricochet around enough to hit the brain of the pathologist and force him to dictate it as my path results.



I'll know something sometime...anywhere between today and 10 days from now.

In the meantime I'm out of shots and have about 12 pills left.

I'm starting to get that feeling of panic I used to get when I only had a couple of cigarettes left. Only I can't run to the convenience store and buy another bottle of pills. Gulp.

We shall see.

I survived Fay and all I got was this lousy T-shirt

I spent over $200 preparing for every imaginable emergency that could possibly come from a tropical storm/hurricane passing over us, and she turned out to be a gardener with a bad perspiration problem. All the dead stuff was blown from the trees, along with a couple of new branches that I suppose Fay thought needed pruning.

When the rain finally subsided, and the winds calmed down, I decided to go to the grocery store (and you're thinking "like they're going to be open!"). Floridian's are either tough-skinned or crazy, or both. The store was doing better business than ever before. I guess everyone else was also sick of being stuck in their homes for 3 days waiting for the drama of Fay to arrive and leave when she got hung up over the Daytona area set on the spin cycle.

I deliberately didn't purchase much fresh food prior to the storm knowing full well that, if the power went out, we'd be much better off surviving on Chef Boyardee ravioli or Dinty Moore Beef Stew. But after waiting and waiting...with the rain and wind slowly building, we had to actually start EATING that stuff. Blech! God only put these things on Earth to nourish Floridians through times without electric and punish them for living in what was only ever intended to be alligator breeding grounds at the same time.

I guess everyone else felt the same about their stash of Beanie Weenies and that's why the grocery store was filled to capacity.

Our electric never even flickered, but the satellite TV did go out at times. Ooooo! Scary!

Turns out Fay was just a dress rehearsal for her brother Gustav.Where the HECK do they come up with these names??! I think the nerds in the National Hurricane Center are teehee-ing at the office as they brainstorm the name list. I think they try them out on their tongue to see which names evoke the funniest reactions among their peers.

"Hey, how does 'Cootie devastates North Florida' sound to you, guys?"

Laughing to tears, his coworkers all give him 2 thumbs up as they move on to the D names.

Very funny. We are the ones who have to report this stuff to the insurance companies and hire tree removal services, etc. all the while referring to the storm with that ridiculous name you gave it. And YOU guys aren't out of the woods either, you know. Your central office is in Miami! Maybe the storms resent the names and hit Florida so often in repeated attempts to punish you. Ever think of that??!

Anyhow, Fay has left the building and she was just a warm-up act for Gustav. Naturally. Because I only managed to get my biopsies during all this mess...there's still the big day ahead for starting the extension phase and I only have so many pills to last me until then. Why not have another hurricane looming ominously over the whole affair? I wonder if the girl on the box of Miss Clairol is as gray as I am underneath all that. Probably not, but I am living proof that it has superior gray coverage.

I mentioned the biopsies, didn't I? That deserves an entry all it's own so I close this out by saying "Farewell, Fay, and don't come back. Four times is more than enough for any one storm to visit Florida."

The doctor came to his senses...

...and decided to close the office today after all. They called at 8:30a.m. to reschedule my skin biopsies for Monday at 1p.m. Thank God! I was worrying about so many different aspects of the impending adventure that I thought my head was going to explode.

Downed power lines, high winds buffeting the truck, road closures, getting lost trying to find an alternate route, driving in torrential rains...it was a worry wart's cornucopia of subjects upon which to dwell.

Now I just have to hope Fay will get a move on and get by us before Monday.

I was worried so much about traveling to the doctor's office today that I've completely neglected worrying about the wind and rain while staying at home.

If that storm doesn't start moving I'm going to have to go to the grocery store again. Either that or we'll have to end up eating all that canned ravioli I bought for "just in case".

Fay is stalled out over Daytona, 68 miles from me, and dumping rain everywhere and blowing little gusts around my yard. I'm still right smack dab in the predicted path, but *predicted* is the key word here....things NEVER go as forecast.

We shall see.

Finally!

I get a call from Keesha saying I get to have my biopsies done but it looks like the saying "come hell or high water" was taken a little too literally. The ONLY appointment they could give me at N. FL. Derm. Ass. is TOMORROW at 1pm.

Last time I looked at the little picture showing the big ice cream cone hanging over Florida, Fay is scheduled to be pounding the heck out of me tomorrow at 1. Guess I'll be driving through hell or high water.

All I can say is these dots BETTER be benign after all this. Stupid spots.