Thursday, August 21, 2008

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 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.

Wednesday, August 20, 2008


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...

Monday, August 18, 2008

As the Fingolimod Blog Turns

crazy ice cream cone of unpredictability, sponsored by Dairy Queen

As if there weren't enough drama in my life, we now have the added excitement of an impending hurricane bearing down on us.

"Will she get the biopsies in time?"

"Will she have to drive through hurricane force winds to make it to the dermatologist?"

Tune in next week for "As the Fingolimod Blog Turns".

Last week I thought we were only waiting for the main trial HQ in Berlin to approve my MRI. Now I have to get chunks of skin cut off like some sick hazing ritual to prove I am worthy of continuing with Fingolimod.

Truth be told, I'd probably let them shave me bald and tattoo "STUPID" across my forehead if it meant a new bottle of pills. I've become such a Fingolimod junky. Sheesh.

My trial coordinator called this morning but because I had an insomniac moment last night and didn't go to sleep until 3am, I was unable to make the 10 yard dash in the alloted 6 rings of my cell phone before it went to voice mail. I had to listen to her message instead of being able to ask a zillion questions.

She said (good news) that she had spoken with Berlin about my MRI and it had been accepted as satisfatory (meaning the image quality and not necessarily the radiological findings). Then she said she had brought up the argument that I had made for being allowed to visit the original dermatologist for the sake of keeping the experiment more scientifically accurate without a bunch of human variants (trying to appeal to their "logical" side that all scientists have).

They saw right through it, like great scientists do when examining data, and recognized the scared, whiny patient beneath. I have to have the biopsies before they will say I can be in the extension phase. Hey, it was worth a try.

This was just about all I could squeeze into my worry calendar and then I tuned into the weather channel. Shouldn't have done that. Bad mistake. There's a hurricane coming this way and the big white ice cream cone of uncertainty that has a black line going up the center (the storm's predicted path) had the ending dot for Wednesday at 8AM being more or less right out in my front yard. If you looked close enough at the map you could almost make out the pool in the back yard.

So now the woman who didn't like driving on a major highway (i.e. anything with pavement) on a sunny day now may have to brave the elements to stay in this study.

It really is feeling more and more like a hazing. The gods have found out that I will allow hunks of skin to be carved from my body in order to receive these drugs and so now they are saying "hmmmm, she didn't even flinch...let's see, what else we got? anybody? You in the back, Zeus, what's your suggestion? Oh!! That's a GOOD ONE!! Let's throw in a hurricane and see how she reacts."

This one's name is Fay and if it weren't for Fingolimod and how much I love it, I'd have said "F"s are bad luck for me. The only hurricane that ever *got* me was Francis in '04. We had a bunch of trees down in the back yard, some shingles ripped off the roof, and were without power in the middle of a Florida summer for 4 days.

I'm not really looking forward to Wednesday when the storm comes through...but if they tell me I can go have my biopsies that day, maybe there won't be any other idiots on the road and I can make good time. If you see any reporters holding onto a stop sign while they flail sideways in the wind for the dramatic effect like a flag at full mast, be sure to check out the background. You just might see a gray Dodge Ram 1500 inching past. That would be me, on the way to get these moles cut off.

And look! Besides a hurricane, they are predicting a major paint spill across the south east...or no, that's tropical wind speed probabilities. My mistake.