Monday, August 20, 2012

A Most Wonderful Gilenya Anniversary

Today is a very special anniversary... FIVE YEARS ago today I entered the TRANSFORMS clinical trial to compare Fingolimod (Gilenya) to Interferon Beta-1a (Avonex). I vividly remember being terrified of both the  needle (roughly the size of a turkey baster) with which I would have to get personal on a weekly basis and the innocuous little pink pill whose side effects were heretofore unknown to me.

Here is the post that documents the start of my adventure:
http://gilenya.blogspot.com/2007/08/mystery-medicine-is-in-my-system.html

Looking back on that day, I will always remember it as one of those life changing, pivotal events. One of those moments that separates the past from the future and leaves in its wake dramatic change. It wasn't long before that day that I had finally started feeling *normal* again after what has since become known as my Last Documented Relapse thus far.

In April of 2007 I had one of my many and frequent (at the time) earth shattering relapses which had left me numb, weak, and suffering uncontrollable panic attacks. The relapse that found me flat on my back in bed one day, staring at the ceiling wondering "if this is all life has in store for me, really then, what is the reason to go on?" The relapse that forced me to face myself and my future and either choose to give up or take charge. It was the relapse that made me choose to enter the clinical trial.

If you were to judge the luck and good fortune I've had in my life by the size of my bank account, it wouldn't be hard to see that my life has been a Series of Unfortunate Events. But having a chronic, incurable, often times devastating disease like MS has taught me that true luck and good fortune cannot be defined by a number prefaced by a dollar sign. Indeed, there could be no amount of money presented to me now for which I would relinquish the past five years of my life and return to that bed, that ceiling, that relapse, that dilemma. What I have been given is worth more than any string of zeros could provide.

Quality of Life. Three simple words that, when strung together in that order, mean more than all the gold on earth.

I know Gilenya has not been the magic bullet for some who have had adverse events or shown no improvement, but for many, including myself, it's been nothing short of a miracle. Everyone's experience is different, of course, and I don't entertain any delusions that I am "cured". I know I will relapse again, eventually. And when I do I will fight my way through it and come out on the other side with my spirit intact -no matter the physical setbacks.

I am just so happy that I made that decision. That for once in my life I decided to be proactive and take charge of the course of my life. Even if it meant thrusting myself squarely into uncharted territory well outside of my comfort zone and serving my very being up to science on a Petri dish.

Over these last five years I have been thanked by many on the other side of the experiments (the pharma reps and doctors alike) for unselfishly agreeing to take part in this historic trial that forever closed the door on "needles only" choices for MS treatment.

I don't think I did anything particularly courageous though. Unless you consider reaching for a life ring and hanging on tight while drowning takes an act of courage.

Rather, I will be forever indebted to Novartis, UF & Shands, all the wonderful doctors and and clinicians who have devoted their resources and (in many instances) their very lives to finding a way to give me back my QoL.

Being relapse free for five years and counting: PRICELESS!





4 comments:

  1. I hear ya Jeri, you and I started fingolimod around the same time (five years already?). It is one of the best decisions I have ever made

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  2. I, too, am forever indebted to them for giving me my sister back. ILYWAMH

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    1. Hey, Sneeky!! You're not "unknown". LOL you fool nobody, sis.

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  3. Molto grazie for sharing such an amazing journey, Jeri!!

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