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.