Thursday, September 28, 2006

Place Your Bets: Doctor’s Orders

“There has to be something I can do.”

That phrase has been digging a hole in my head for over two years now. I think it’s the voice of human nature telling me not to accept things as they are, a voice we all tend to hear when tragedy looms and events feel beyond our control. Despite being told my illness was fatal, I was convinced there must be a way to stop it, or at least slow it down.

Once the shock had passed, I started researching the field of ALS, and soon realized my options fell into three areas: 1 FDA-approved drug, a handful of clinical trials, and a rag-tag list of alternative therapies. There didn’t seem to be any consensus among doctors, scientists, or patients as to which of them, if any, might truly work.

I’ve been to a horseracing track exactly twice in my life, and both times I felt completely clueless as to which horses to put my money on. I had never heard of any of them, and had virtually no information to go on. With ALS, it seemed as though I’d have to place a bet on one, perhaps several of the horses available, and pin my hopes on them winning the race. Given the stakes, I figured I’d be lucky for one of them to place. Or show.

My initial neurologist tried to reassure me by saying there is a prescription drug to slow the progression of ALS. She made it sound like a sure-fire bet. But she failed to mention that the drug, Rilutek, was approved by the FDA more than 10 years ago, and has yet to prove itself even remotely effective. Here we are, nearly 70 years after Lou Gehrig put ALS on the map, and we only have one lousy treatment.

From what I’ve read, statistics show that based on the average life expectancy of 2 to 5 years, Rilutek gives you another 3 months, if that. Each pill adds perhaps 2 hours to your life. Of course I immediately considered downing the whole bottle, but apparently you should only take two a day since it can be tough on your liver.

Three months is better than none of course. But I find it ridiculous to call it a treatment, especially when it costs more than $11,000 a year. I suspect most doctors regard it as a rather limited tool in their bag of tricks, and little more than a formality to prescribe. It’s the only medicine they can officially suggest you try. Still, as long as its covered by insurance, I’ll take it. It’s something I can do. And it helps a little to keep my hopes, if not necessarily my legs, alive and kicking.


Vanessa said...

Many years ago, after waking up in a surgical ward in Africa, too sick to scream from the stab wound in my gut, my husband tried to comfort me explaining that the surgeon had to remove my fallopian tube and that he had our dead baby in a jar...asking if I wanted to see the baby we lost before they would take it away to be buried. I was too sick to look and moaned "I can't". The next day, the surgeon came by and explained that my ectopic pregnancy was due to the fact that the baby had not made it out of the tube...that his legs were in the uterus but the torso had been attached inside the tube..he said he had almost made it. I wanted to scream all over seemed so unfair to us all.

Four years later when the pain subsided, we adopted, after a six month wait, our first of three children, Jenaba. She only weighed 4 pounds but she lifted the weight from our hearts. Two years later I had my second ectopic...another sad experience even though I had been told there was a 50% chance of it happening again. The pain was the same, but I had Jenaba's picture by my bed as I recovered.

Scott, I know our situations are different, but I know how it feels to be handed a prescription for Rilutek. But instead of talking about my present state, I think my past holds a lesson, at least for me.... That there was darkness I had to pass through in order to find was so hard to understand at the time, full of heartache...but it led to a bigger picture...or plan that I didn't realize...Now I watch my 9th grader dive as she plays on her volleyball team and I'm so glad I found her, despite the pain...and I don't know what our future holds...I know she will always need me, as much as I need her, but I realize our time together may be uncertain...but what is certain to me is that I am part of some mysterious plan...I can feel it in my bones and in my soul.

I can't say what good lies ahead for you...I wish I could foresee it for you...but I believe there IS good ahead for you and your family, Scott...maybe not as you imagine it. I know you feel like screaming....the darkness is hard to go through...but there will be a light. That is what I have come to believe.
Take care....Vanessa

Your Wife said...

I want to see the next posting, the next installment in this blog series. Soon! It's November!