Life at 30,000 Feet

Wegener's and the drugs used to treat it are like flying into a big cloud. You lose all sense of direction, often not having any idea if you're getting better or worse. All the usual visual cues are gone, and it can be very disorienting. You have to rely on flight instruments-- diagnostic indicators in the case of Weg's-- knowing full well they're often not reliable. And you can be flying along just fine and suddenly hit turbulence. It's invisible-- no way to brace yourself ahead of time, no way to guess when it might end. Sometimes a suitcase falls out of the overhead bin and hits you on the head, too.

This is an ongoing issue with Wegener's. I've gotten better at being comfortable with uncertainty. Better. Not expert.

A few weeks ago I flew straight into a new cloud. The chemo I was on for four months failed to control the Weg's and almost killed me in the process. That was a cloud I've flown into before, though. (I knew it was weakening me. Thankfully my awesome Hopkins doc agreed and issued a parachute before the plane went into a tailspin.)

The new cloud is a new drug--Rituximab, for those in the know. It's a genetically-engineered antibody. Unlike all the other drugs I've been on, I have no idea how to work with this one. Symptoms (or side effects, who can tell?) flare up and recede without warning, and I generally feel like a pile of suitcases has fallen on top of me. I daydream about running for the emergency exit, sliding down the big, inflatable slidy thing and shouting, "I'm out! I'm out!"

I know so many Weggies and other people who also live in the clouds of incurable and/or unpredictable disease. So many of them have it far worse than me. Please say a prayer for them, that all may see sunny skies again.