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.

Happy Drug Day To Me!

I just noticed that today's date is my actual 1 year anniversary of starting the drug trial. A year ago today I was watching some really bad movies with my sister while having my vitals taken every hour. How time flies when you're having fun.

As Fay Approaches

Last time I posted, Fay was supposed to be here by 8am today, but she's apparently related to me because she's running late. Not going to be here until tomorrow morning and the most recent predicted path has her stopping over at my house for a visit.

Meanwhile, the saga of the biopsies continues. North Florida Dermatology Associates have continued to totally ignore not only my voice mail messages (totaling 3) but also those of my study coordinator. Now, I can understand putting off returning the call of a whiny patient, but a doctor calling? They ignore a DOCTOR telling them the biopsies need to be done STAT so that the schedule of the clinical trial is not disrupted??

I have never seen such incompetence in my life. I found out the original doctor that I saw there last year (who didn't think any of my skin irregularities warranted carving out) is no longer there. I am suspecting he did not meet his required quota of biopsies and was made an example of for all the other dermatologists to see.

The way it works at N. FL Derm. Ass. is this: They have 5 offices scattered around the area. The doctors apparently travel because the one who wants to cut on me is actually from the Orange Park office even though she saw me in Jacksonville. When you call their number, it's a central number that goes to a central switchboard. They can transfer you to scheduling, where you get live people, but only for office visits, not procedures. The individual doctor's nurse is ruler over that domain. And, conveniently, Keesha is always busy and you get her voice mail which I suspect is set to automatically delete the message as soon as it comes in so she isn't bothered with things like patients.

The new plan, about which I'm still awaiting the good word, is one my trial coordinator came up with. She thinks I should have a "second opinion" about the biopsy and go to a totally different dermatologist. One not in that group. I think it's brilliant because a) I should be allowed a second opinion before someone takes a knife to me and b) it will enable us to skirt that group of unresponsive jerks who are possibly compromising my extension phase and c)might mean I don't need biopsies after all.

I'm telling you, these offensive spots are no bigger than fleas and I have had them all my life.

The trial coordinator is supposed to be running it by the lead investigator to see what he thinks. I guess if he feels it's a good plan then perhaps he will have more pull when trying to persuade Novartis.

I have less than 20 pills and only one shot left, and a possible hurricane approaching so they better figure out something quick. Tick, tick, tick...