Wednesday, October 26, 2011

The Very Nerve





Leave it to me to strike that one-in-a-million jackpot. Although in this case, I'm not sure it's a prize that anybody wants.

A couple years ago, I complained to my doctor that my toes were numb. She blamed it on poor circulation and said it was nothing to worry about. Okeefine.

But when I noticed that the numbness and tingling were spreading up my legs, I made another appointment with Dr. Ravishanker. This time I caught her eyebrows raise in concern as she referred me to a neurologist. Have you ever been in the office of a neurologist? They keep scary tools that involve safety pins, cables, water and electrodes. All of which he used on my feet and arms.

I felt nothing.

What followed next was a bone marrow biopsy and CAT scan, a plethora of blood tests and weeks of worrying. Was this Leukemia? Myeloma? Lymphoma? Cooties?

Try MGUS.

Not a very sexy name. It sounds like a fungus or the name of some military SWAT team deployed to the Middle East. But MGUS Antibody is actually a rare and incurable blood disorder in which my blood is producing proteins, little Pac Mans if you will, that are eating the sheaths of my nerves. Considered a high-risk precurser to Myeloma and Waldenstroms, it's a slow-moving disorder that typically strikes older people in their late 60s and 70s. MGUS isn't thought of as especially serious, since seniors won't usually live long enough to experience repercussions that can include the inability to walk (due to lack of feeling in the limbs).

But as a mere "child" of 53, I will live long enough. God willing. And that's the problem.

To be honest, I'm still not quite grasping the severity, or lack thereof, of this diagnosis. Initially, I didn't tell many people because a health announcement is usually made when there's something serious to announce, like cancer. I'd feel pretty stupid making this grand dramatic statement that, "Oh fiddle dee-dee, I'm withering away from MGUS," and worrying all my friends, only to find, ten years down the road, that my right pinkie is a bit numb, but hey, other than that I'm fine.

Uh, sorry for the needless concern, folks. My bad, ha ha.

That's why I asked my neurologist, who bears a startling resemblance to Bee Gees brother, Robin Gibb, if I should be worried. "Give it to me straight, doc," I said. Just like in the movies. He hesitated and then shrugged. "It's not terminal," he finally replied, "but it's definitely a drag."

And there's no treatment for MGUS, except for one: chemotherapy, which only boasts a one third success rate. Chemo won't cure the disease, but if I respond, it might slow the progression and possibly even regenerate damaged nerves.

Which means I had a decision to make: with just a 33% chance of success, did I want to pollute my pesticide-free-organic-vegetarian body with such a toxic treatment? I wrestled with the decision for several weeks.

And have my first treatment this Friday. Stay tuned for details.

1 comment:

Maria C. said...

GOOD DECISION! Best of luck! Keep us posted on your progress!

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