I like my steaks rare...

...but my diseases not so much...

Actually that's not true. I don't even like my steaks rare. I like them burnt. Charred. Deader than a door nail and covered with a layer of carcinogous goodness. Predictably free of life and pathogens that have been cooked out of it several times over. Needless to say I do not cook my own steak as a rule because it turns out like a very expensive hockey puck, but that's another kettle of blog. Let's get back to the matters at hand.

I used to think there was a really cool mystique around having a rare disease. You see people who have them on tv or the interwebs packaged into stories of struggle and triumph. Faith and persistence. Sacrifice and perseverance in the face of adversity. But when you are sitting in the success seat looking back at the nightmare, the story is different than it is while you are going through it. When you have a solution, the process to find it makes sense. If you don't have answers it's all just a muddle of being the ball in a giant pinball machine that never stops and doesn't tilt (if you're under 40 and reading this, go ask your parents what a pinball machine is...).  I'm hearing the background music now courtesy of Roger Daltry and the Who.

There is very little to report from the past week of scans and tests here at the NIH. However, at the 11th hour something did show up that didn't give us any answers but rather more questions. Not the list I wanted to add to, but the pinball doesn't have a say in that. Briefly, for those of you who have a weird curiosity about these things, my thymus has been "lighting up" on MRI's I've had here for a couple years. But not on any of the other scans. Considering the thymus has nothing to do with Cushing's, and there are not any cases even in the weirdest of the weird ones, where it matters, we explained away the anomaly and moved on. This trip yielded much the same results as earlier trips with the exception of that new scan. The new test turbo scan accompanied by the lead syringe full of goodness knows what that makes you radioactive for a day or two (I prefer to dwell on my possible superhero names and powers than the damage done to my system).  My thymus "lit up" on that one too. Yippee, right? That's a cross check that must confirm something even if we don't know what it is. That's good, right?  Let's review one point - the thymus has nothing to do with Cushing's. What the hell do we do now?

My thymus has never acted the way it would be expected to on my scans. When it's supposed to shrink it grows. When it is expected to get bigger ( like if it was grinding out Cushing's goo) it doesn't.   Sadly this is not the first time this type of puzzling test results has been presented by my person.

THIS IS WHAT IT MEANS TO BE RARE!  It's not glamorous. It's not interesting. It's a pain in the freaking ass!  It means we pursue things that make no sense. That aren't logical and in some cases an explanation has to be fabricated that is almost laughable. There isn't anything to compare to when you're rare. There is no guidepost. There ends up being a lot of try and fail, and hope and disappointment. Experimentation that wears you down exponentially faster than any traditional treatment does. Yippee???...you tell me.

So I'm still here. Monday my doctor is going to try to schedule a procedure to get a sample of the fluids flowing in and around my thymus. If that doctor can squeeze me in this week, I'll stay and have that done. If not, I'll leave and come back for it. When the sampling has been done, it will be up to my doctor to figure out what, if anything, the sampling tells us. I'm leaning towards unicorns exist and the tooth fairy is real, but I'm no expert. It's no more crazy than some of the other theories that are being floated around here. If someone sees Jesus in a grilled cheese sandwich I may be cured!