A Trip to the Fair - Part 1

The azaleas are in bloom here in North Florida, ushering in the springtime. One of the annual events is the Putnam County Fair which we always try to attend but usually something comes up and we don't go.

This year was different. A year and a half ago I reconnected with my best friend at, of all things, her husband's funeral. I kicked myself for letting the time -- nearly 20 years -- get by us, and I regretted losing out on spending time with them both when they were a happy couple.

So now, with my perspective changed, I am trying to do things before it's too late. Even the little things are important. No more "there will be time for that later" as we all know that later may not come. And nobody lays on their death bed wishing they'd worked more. No, they regret that they didn't spend more quality time with the kids and grandkids.

So, with that goal in mind, I DID go to the fair this year by gosh! And I went with my 12 year old and my rediscovered friend, Karen, and her great neice and great nephew. It was dollar night and all we needed to do was bring 1 canned good donation per person and entry into the gates was just $1 a head. All rides were also just a buck.

The kids kept encouraging me to go with them on all these rides that whipped you around and turned you upsidedown, but I was content to be there living vicariously and watching them have all the fun. The smiles and laughter brought joy to my soul.

We walked around the park and let the kids ride all the rides and play all the games while Karen and I reminisced. At one point we were in the back corner of the fair, looking out across the entire event. The glow of the setting sun bathed the screaming, laughing crowd in a golden glow and all seemed right in the world.

I said something like "this day couldn't be more perfect!" and Karen said "Used to be I'd come to the fair and see so many people I know. This year I don't see anyone. It's a shame to say, but nowadays if I want to see people I know I have to go to the hospital."

Since losing her husband over a year ago it seems like she's spent all her free time nursing her loved ones with no time for grieving her own loss. The remark about the hospital was funny, but true.

At that moment the kids got off a particularly crazy ride that had spun them silly and they were staggering all over. My son, who leans toward the dramatic, was overacting it a bit and stumbled into me causing me to, in turn, stumble before I caught my balance. In a cross voice I tell him "Hey! Be careful! I ALMOST FELL!"

My heart pounding in my chest from the near catastrophe, we turned and headed  down the fairway toward our next ride. It was maybe all of 10 steps later that it happened.

My hands were involved in the task of digging for ride tickets in my purse which was hanging from my shoulder when my left toe came to a stop on my leg's forward motion. For anyone that has tripped in their life, they know that utter panic that instantly hits you when your gait is suddenly interrupted and there is no recovery, and not really even any planning time for the best way to minimize your impact. It's no different than being strapped into a ride at the fair and knowing you made a horrible mistake thinking you could handle The Zipper this time. You just ride it out until it's over.

I sort of flew horizontally for a brief moment before my left knee impacted the blacktop, followed almost instantly by the left side of my forehead. I remember it made an amazingly loud "CRACK!" sound and my glasses flew off my face.

The first thought I had was being angry because I paid a lot of money for those bifocals, but then I remembered I had been wearing sunglasses. Whew.  It's funny what stupid things you think about at times like that. (well maybe it's just me.)

My son came running up screaming "MOM! MOM! Are you ok???" and my friend Karen turned around, not having seen me go down, and immediately panicked thinking it was my MS. Since we have been reunited in our friendship, she's not had the pleasure of seeing what an MS attack does to me and did not know that normally it's more gradual than that and would not put me unexpectedly flat on my face.

So there I lay. Next thing I know, some guy who saw me fall came running over and was helping me up. When I lifted my face from the ground I heard a collective gasp from everyone around. I reached for my forehead and was surprised to feel a huge goose egg there. When I pulled my hand back it was covered with blood. Eeeek!!

THAT'S when I started to freak out. Karen and the stranger both helped me to a bench just feet away where I sat cupping my goose egg and shaking uncontrollably.Karen ran to get me some ice and I could hear people shouting to call an ambulance.

It seemed like everything was moving in slow motion. Karen gave me a bag of ice that I pressed to my head while my son sat sobbing beside me. I was confused about what happened and had initially scolded him again for tripping me. He said he didn't think he did, and after reliving it again in my mind I realized he'd been behind me to my right and there wasn't really any way he could have done it. No, I had just tripped over my own two clumsy feet.

(to be continued...)

It's finally over!

Wednesday and Thursday (the 19th and 20th of Jan.) were a blur of testing. Novartis wanted things wrapped up for the TRANSFORMS trial by January 20, 2011 and the folks at my location were giving it the ol' college try.

Wednesday I had my final dermatology exam and as usual I came away with a bandage on me. I have suspected since my very first visit when 3 beauty marks I'd had all my life remained behind in a specimen jar (or on a slide or whatever they do with that stuff) that this was a money making proposition. In the four visits I'd made to the facility, I lost 5 moles and one angiolipoma. None of them were anything to be worried about.

As if to confirm my suspicions, when the new doc (from the same group) couldn't find anything remotely suspicious to cut off, he reviewed the clinical trial paperwork they'd been provided and said "They'll pay for up to 3 removals per year... is there anything you want removed?"

Instead of explaining to him that technically that was supposed to only be IF the moles looks suspicious, I just pointed to this gigantic mole on my neck I'd had all my life. I'm sure it's the cause of my early-onset low self esteem and I decided with my birthday looming I'd just go ahead and treat myself.

He said "you've got 2 more coming for free... anything else?" When I shook my head he turned to his nurse and said "Just numb her up for that big honkin' one then."

"HONKIN' ONE??" I asked. "Is that medical terminology?"

Ah to be the brunt of a funny joke! Anyhow, to make a long story short, the big "honkin'" mole is gone and in it's place is a big honkin' scar. Oh well.

Next day I had my EDSS test and had to deal with the recorded man asking me to add numbers. This time I ACED it. Not a single wrong answer. Just the way I'd planned -- to go out on top.

I also had a PFT, EKG, bloodwork, eye exam and a MRI that day to wrap everything up.

When it all was over, I gave back my last 3 bottles of trial medication however wistful that I would like to have kept one for a souvenir. In return I was handed my first 30 day supply of the commercial version!!

I applied to their assistance program and qualified to get my Rx FREE for a year. After that, I'll have to reapply. As long as I stay indigent like I've been all my life, I'll be okay. What a plan.

If I win the lottery, I'm screwed.

Anyhow, it's been a long strange trip and I am so very grateful to have had the honor to be a part of it.

If you want to keep reading I'll try to remember to blog, but it may just be about me and not the drugs now. I'll keep reporting how I'm doing but since the trial is over I won't be blogging my checkups.

Thank goodness because the dermatology group would have whittled me away to nothing before long.

Nearing the end

I went for my checkup on December 1st. Just the usual blood draw, EDSS test, BP, HR, and one other thing I've never done before...

I filled out an application to a special drug program offered by Novartis for clinical trial participants. I had to provide my shipping address and my insurance information. Since I have no insurance that part was filled in with "None".

The rest of the form asked for my doctor to provide prescribing info and I was told the lead investigator would be the one to fill that out.

This form was supposedly faxed off to Novartis the same day and I should be receiving a call on my cell phone within a week or so gathering more info or instructing me on what happens next.

When the details have been all ironed out and I am guaranteed to be on a Rx and know how I'm going to get my Gilenya, then I'll be scheduled to have my Exit Exam.

The exit exam will include a skin exam, eye exam, PFT, MRI, EDSS, EKG, CT, BP, HR and probably a lot more ABCs I can't think of off the top of my head. Basically every test I had to take to get into the trial, I will be taking to get out of it too.

My clinical trial nurse said to expect this final exam (I have no idea how to cram for that) after the first of the year. I have more anxiety about leaving the trial that I had about getting INTO it. I know that sounds crazy, but things have gone so well for me and I have not relapsed in so long that the idea of leaving my comfy cage and exercise wheel behind to just be on my own with a new neuro is scary to me.

I'll be sure to document what happens with the application process as well as the Exit Exam for those of you in the trial who are curious about what happens next.

I'll keep blogging if you keep reading this drivel.