Tuesday, September 15, 2009

Extension Phase 1 year checkup -- part 2

Yesterday I was supposed to drive back up to Jacksonville to finish up my one year anniversary checkup for the extension phase of the Fingolimod trial. All I had left was the dermatology visit, the eye contrast chart, and the MRI.

Piece of cake, I thought.

I need to quit thinking that because inevitably it's NOT a piece of cake but rather a piece of dog poo I mistook for a piece of cake.

I get in the exam room at the dermatology office, waiting for the doctor in my backwards paper shirt and the pathetic little paper blanket draped over my lap.

He's just supposed to give me a quick once over and double check the scars of my last visit to his office where he decided my cute little beauty spots on my lower back needed to be excised to see if they were something more ominous. They weren't.

He comes in and shakes my hand and starts his exam by looking at the backs of my ears. That's odd, I thought, but didn't say out loud. I guess he's got to start somewhere and since I have a LOT of hair, maybe he thought they might get lost and forgotten all up in there (as they say down here in the south).

Ears; check. Neck, face and shoulders; check. Left arm; check. Right arm...

"So what does the study do if I find something I think needs evaluation?" he asks casually.

"They pay for it because that's why they sent me to you," I say. Why do I open my mouth?

"How long have you had this blue spot on your arm?" he asks as he tried to grab it and pop it like a big pimple or something.

"That thing?" I say, "at least a few years. Longer than I have been in this study, so it's nothing new."

"Does it hurt when I mash it like this?" he asks as he squeezes with all his fingers and thumbs.

"It doesn't normally hurt," I say, "but I can't be certain what you're doing wouldn't be hurting no matter where you did it."


Ever so casually he says to his assistant, "Get me a blade and a punch kit. We're going to have a look."

"EEEEEK!" was all I could say.

"I should know better to come here! Every time I go away, I leave a piece of me with you." (ala that Paul Young song).

He just laughed and said "What can I say? I like to collect souvenirs."

He buzzed through the rest of the exam and next thing I know I'm getting 3 needles of numbing agent circling my blue spot (more of a subcutaneous lump actually) and draped with a steril cloth with a hole in it.

Since it was the back side of my upper right arm, I had to twist my arm across my torso to allow the good doctor easy access with this Dremel tool kit.

I looked away at first but then noticed a bloody scalpel being handed from doctor to nurse across my body. Time to squeeze the eyes shut tight.

It took about 10 minutes tops to cut me open, gouge out the offending blue lump, and then sew me back up. It actually seemed like a fortnight. (Not really, but hey, how often do you get to use the word "fortnight" in everyday conversation?)

He said something that sounded like "Diagnosis: Antidisestablishmentarianism-oma" to the nurse, not really directing it at me.

I then said "hey, can you write that down so I can show my trial coordinator because I'd hate like heck to get the wrong 'oma' when I tell her."

He obliged me and after scribbling the name of the lump that heretofore had always just been called "Old Blue", he disappeared out the door leaving me to change from the sweaty, rumpled mess my paper clothes had become into my more durable cloth attire.

I looked at the paper and the word was a regular tongue twister. Here I thought "Fingolimod" was a mouthful.


(ăn'jē-ō-lĭ-pō'mə, -lī-)
n. A benign tumor composed chiefly of fat cells and containing an unusually large number of vascular channels.

When he first gouged it out of my arm and held it aloft at the end of his spear (I'm guessing here because my eyes were shut tight), he announced "Yeah, it's nothing to worry about. We'll send it off for path, tho."

I asked the nurse if he was cross stitching his initials into my arm since it seemed to be taking so long to close me up.

So, now I have this huge patch on my arm and I have to wait until the 24 hours are up at 11 a.m. before I can unveil his masterpiece of surgical excellence. I hope I don't pass out. I'm not much of one for movies like Frankenstein, and there's no looking at this trying to convince myself it's only movie magic -- don't be afraid.

And that was only the BEGINNING of my day.

I drove from there all bandaged up like a mummy (ok, well, I had to wear my short sleeve hiked up a little in order to get any sympathetic glances at ALL) and drove over to The Towers as I so affectionately refer to them now.

My trial coordinator was waiting for me and burst into giggles when I told her not to send me there many more times because he's whittling away at me so much I'll eventually disappear.

She had the contrast eye chart for me to do.

Black on white was just fine. Gray on white was a little more troublesome, and the slightly shiny letters on white were gone. She was pointing at the chart with her pointer and I was saying "there's nothing there."

After fiddling with the position of the chart and the blinds on the windows to alter the ambient light, we tried again.

This time I did better, but still a dramatic change from last time. Had it not been for the fact that this was the new deviation from the standard practice of the actual eye doctor performing the test in her office, I may have worked myself into a panic thinking I was going blind (even tho I could see just fine).

But since the eye doc is such a busy lady, my trial coordinator thought she'd help out by doing the eye contrast tests in her office instead.

So much for the constants in the science experiment that has become my life. I asked her to please mention to Novartis that we aren't conducting the test in the normal place and the lighting is different so they don't boot me from the trial and give me a candy striped cane as a parting gift.

After that was over, the only thing left was the MRI. I was scheduled to be on the same machine as always since the start of the trial so I knew it was the 4 foot tube and that it's no big deal.

At least it wasn't any big deal last year when I shot the tube with no drugs to calm me. I recall I was so relaxed I nearly fell asleep.

I guess yesterday was an exceptional day. I got in there and laid down on the table to get ready to slide into the tube and I just started hyperventilating.

It didn't help that the technician was trying to calm me by telling me all the stuff that was NOT going to happen to me. Stuff I may not even have been worried about was now thrust as actual scenarios into my conscious thought...

"Don't worry...it's not like it can crush you or anything."
"And there's plenty of air in there, you won't suffocate."

Did she really wonder why I mashed that panic button as soon as she left the room before the MRI was even out of neutral??

I had a washcloth over my eyes, headphones closing me off from the world and gripping my head, and a bird cage slid over my face. Then I was shoved into a paper towel tube and a muffled voice was saying "you're doing fine! just relax...nothing bad will happen, I promise."


"You want to get out?"


"Ok, that's fine. Tell your trial nurse you need some meds to do this and we'll reschedule."

"Ok, I'm so sorry. I didn't mean to waste your time. I just can't do it. The stress of having my arm gouged out unexpectedly a couple hours ago must be why my lunch wants to come back up."

So I went back to my trial coordinator who looked at me with a puzzled "how can you be in the MRI machine right now AND be standing before me?" look.

"I couldn't do it. I gotta have some Xanax, sorry."

"That's ok.... but..."


"Well, didn't you do it last year on the same machine without any drugs?"

"What can I say? I'm perfecting my hypochodria in my old age," I shrug.

So now I have another MRI scheduled for the day I have to come back up to get my Frankenstitches out.

Stay tuned for Extension Phase 1 year checkup -- part 3, or

The never ending clinical trial checkup.

I go back on the 24th.

Saturday, September 5, 2009

One Year Anniversary of the Extension Phase in Fingolimod Trial

It came and went. The two year mark of being in this clinical trial (including the past year that was the extension phase) happened on August 20th.

It came and went without so much as a "hey, today is the day!" comment. And what is so amazing about that is it went by because I was having a BORING normal day. No MS drama, no steroids, no hospitals, no canes, walkers or wheelchairs (although I own them all, just in case).

It was a Thursday and I was enjoying sitting around with my mom and sister for our usual Thursday night get together where we watch Big Brother or Survivor... whatever is in season.

But it is a monumental day in my life that should not go unrecognized. It marks the two year anniversary of the best decision I have ever made in my life. To join this clinical trial has literally given me my life back.

When I look back at where I was two years ago, I realize with some alarm how close I was to cashing in my chips, buying the farm, kicking the bucket, pulling the plug, punching my ticket... whatever you want to call it, I was at the end. I was looking at my future with MS, that drama queen that would steal the show and alter all lives in it's path, even if only for a few weeks at a time, and I just didn't want to do it any more.

I remember reading over the informed consent and weighing my options. "Either I take a chance with this stuff and perhaps die, or just stick with what I have known for several years and want to die."

The choice made itself. And I have not had a single documented MS relapse since starting.

With all the stress, heat and exertion of moving and trying to get the house up to snuff for the insurance company this past month, I know if I hadn't been in this trial and taking my pink power potion, there is NO earthly way I could even have imagined doing all that I have done without having to have a nap from the sheer exhaustion brought on by such an idea.

When I went to my 1 Year Anniversary of the Extension Phase Checkup, the lady neurologist who performed my EDSS test said (and I quote) "I really can't find much wrong with you. You really seem pretty normal to me."

To which I replied "My kids would beg to differ."

I took that other test where they play the recording of the guy saying numbers and you have to add the first 2 together and say the total, while remembering the last one he said and adding it to the next one he's going to say (if it sounds confusing, try having to actually DO it! A new number ever 5 seconds.)

I always get a perfect score on the practice round, get cocky and tell them "I don't need no more steenk-eeng practice rounds!" and then majorly flub the real McCoy.

But this time I ACED IT!! No fooling! I was surprised as you are. Well, probably more because you had to be there for the drama of it and all. The lady giving the test couldn't believe it either.

I also did the peg test, had an EKG, walked the hall 25 times (in 12 minutes) for 500 meters, had a PFT, gave about 6 vials of blood, and peed in a cup. Oh, and I had my eye exam.

Everything was just fine.

I go back on the 14th for my MRI and dermatology visit. Hoping everything is "fine" then too. Being a hypochondriac it would go against my very being not to worry that something was terribly amiss. So, that's what I'll worry about between now and then.

My next real worry is: what am I going to do when this stuff gets approved?? I won't be able to afford it. It sucks to think I might not be able to afford to pay for having even a normal, boring, mundane life. I'm not asking for a million bucks or to be able to travel the world or even a $100 Wal-mart shopping spree. I just want to live a life where my biggest worry is how to pay the electric this month. And not have to worry about "am I going to be able to walk this week?"

Novartis, if you're listening, the humane thing to do for all those of us who are so bravely offering up our very lives in order to further the advancement of this magic Fingolimod pill so that you may reap obscene profits from the suffering of hundreds of thousands of people with MS would be to at least give those of us who allowed you to poke and prod us in the name of Science free meds for life. Would that really be such a dip into the billions you are projected to make off this pill?

And you know I've been plugging this stuff for a couple years now for you. What better hype could you get than word of mouth?? You can't BUY that kind of advertising... but I'd never turn my nose up at free meds for life. Come on, have a heart. I'd be sure to blab all about it and you'd look like a bunch of humanitarians on top of delivering a pill to all those poor MSers sick of sticking themselves.

It's a win-win, don'tcha think?? :D

I'm Baaaaaaack!

Did you miss me?

Sorry for the long hiatus but it wasn't because I was stranded on some luxurious island sipping exotic drinks while laying in my hammock feeling the breeze and listening to the lapping waters.

No, I have been preparing to move and then actually doing it.

The reason I mention the "preparing" part is because that is what really took the longest. I've been in the same house for 20 years and I'll go ahead and confess now that I was a hoarder. I think it came from the fact that we had a devastating flood when I was a child (1972 hurricane Agnes caused the Genesee River in Wellsville, NY to fill up our first floor of our home). We lost darn near everything.

After that I just held onto everything. Well, it's either that or I was just too lazy to go through stuff and kept "saving it for later just in case".

At any rate, I had lived in this house for longer than I ever lived anywhere and so the "save for later" stuff had pretty much been allowed to take over my back room.

So I have been freed from my obsession through a couple weeks of sorting and a bunch of trips to Stinky Town (the dump) with trailer loads of stuff I no longer felt compelled to drag around with me through life.

I'm telling you, it's a liberating feeling to be leaning more towards a "zen" kind of minimalistic existence.

When you have to move all that crap it really brings its worth to the forefront. I had some stuff that I was really attached to go rolling down the hill at the dump and I didn't even shed a tear.

I didn't do a yard sale, ebay or even craigslist because there wasn't any time and it would have meant holding onto stuff longer and possibly having second thoughts. There wasn't even any lucky helper to root through stuff and say "You're really getting rid of this?? Can I have it??"

Well, my oldest son did help me (he, in fact, did most of the lifting/hauling) but he didn't get overjoyed or envious of any of the junk I was throwing away with the exception of a box of wires that could be used to connect various electronic components.

Right in the middle of our move, a guy came by from the insurance company to take pictures and report back to our new home owner's insurance company.

We got a subsequent letter stating we were canceled.

The reasons being:

  1. The bushes were too big (my 50 year old azaleas).
  2. The house was green and needed pressure washing.
  3. The yard needed to be mowed.
  4. Branches from the tree out back hang over the roof.
  5. The steps needed handrails on both sides.
  6. The laundry room steps needed handrails (even tho nobody has ever used that door in the last 20 years.)
  7. The trampoline was still up (I had told them it would be disassembled but I hadn't gotten that far yet).
  8. The project Jaguar in the back yard (inside the privacy fence) was listed as a "junk vehicle" that needed to be removed.
  9. There was "trash" all over the yard. (the stuff I was sorting and taking to the dump, along with all the construction materials I was saving from our remodeling efforts from the past 2 years).

So, while I was trying to go through all my "stuff" to pack and move, etc., I also now had to contend with a deadline to get the house in shape by Sept. 4th so I could find a new insurance company who would write a policy based on my "rebuttal" photos.

So, one day would be spent making trips to the dump, or filling up boxes with the "keep" stuff, and other days would be spent pressure washing the house, painting the porch, building handrails etc.

If it weren't for the help of my son, and John and his carpenter friend and motivational force Larry, I'd have never made it.


  1. Hacked the azaleas down to the ground so they couldn't argue that they were still too big or possibly touching the house (they are stumps now).
  2. Pressure washed the whole place with Larry's industrial sized pressure washer (I did very nearly all of that chore myself).
  3. Hired a guy with a riding mower to do front and back yards.
  4. Used Larry's pole saw to trim trees that hung over the house.
  5. Had Larry build handrails for front porch.
  6. Had him build a pair for the laundry room steps.
  7. Took apart the trampoline.
  8. Put the hood back on the Jag and covered it with a car cover.
  9. The "trash" pretty much took care of itself once we had the stuff sorted and packed or hauled to the dump.

Yesterday was the deadline and I emailed all the pics to our insurance company. They still want a few more pics, but they sent me a quote from another provider. Hopefully that will all be a bad memory real soon and everything will be back to normal and fully insured.

It's almost like they wanted a brand freaking new house to insure. The place was built in the 40's for crying out loud.

So, now the other part of the story.

We moved because a) we are struggling to pay the mortgage since John works construction and is out of work much of the time lately and b) my son and his wife and daughter (who live with my mother) wanted their own place and were going to move out and leave her living alone.

I couldn't have that. So, John and I talked it over and decided the logical solution would be for our family to move in and stay with her while my older son's family moved into our house and paid the mortgage. Problem solved.

The move is nearly complete but each party still has "stuff" at the other party's former home.

And none of this would have been possible without my Fingolimod. I think it gives me super human strength, or at least it kept me from collapsing into one big puddle.

All this, and I had my 2 year study checkup last week, but that's another post.