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!

Just another beautiful day on the ward...

I wish there was something interesting to report dear readers, but sadly there is not. The overarching theme of my NIH stay is still hurry up and wait. Actually, you don't even need to hurry up. I'm just kind of hanging out and waiting with some injections, scans, meds and meals in between.

The MRI's that I've had so far has shown nothing, but we weren't really expecting to. They are just kind of insurance scans to be sure nothing crazy is going on...or crazier going on...anyhoo, nothing there. All the blood tests and 3 days straight of peeing in jugs yielded much the same results as I was getting over the past few weeks in Kansas City.  So no new news there. We are still waiting for the doctors to read the three CT scans I've had, but I'm not super hopeful there.  No real reason except that I have those CT scans every time I come here and they have never yielded any sightings of the mystery tumor.

Today I have the scan that might just break my case wide open. Of course I did have to sign my life away to take part in the test protocol, but if it finds something it'll all be worth it. Right now I'm fixated on the fact that I had to wolf down an early breakfast because I can't eat for 6 hours before the scan. Anyone who knows me knows that missing a meal is not high on my favorite things list. The only problem with getting my hopes up about this scan, aside from just your average run of the mill problems with getting my hops up after 3 years of disappointment, is that it'll be 24 hours before the doctors reading the scan meet with my doctors.  That means no news comes to me until Friday night.

The enemy of positive thinking is time. Empty hours let the negative in to fester and grow until it consumes you. Mental exhaustion comes not from dealing with problems, but thinking about them. With dealing comes action. A process of moving through the problem and making progress no matter what kind or how minute. Thinking without control just puts your brain on a loop that it can't stop until it has to shut down. And when that happens nothing works. So here, I walk, I go to the gym, I go to the library and read magazines that I wouldn't look twice at in the checkout line, I binge watch shows on hulu I have no interest in under normal circumstances. So far I'm doing ok...until I run out of magazines...

It's like falling of a bike....

Here I am back at the NIH for my annual (give or take a month or so) two week probe, drain and scan. I know the process now - where everything is, who the players are and how things work. In some ways it was better when I came here more often because the people would recognize me and know my name. But over the past two years my body and face has changed so much (and thankfully back to the way all of you know me!) that now they don't recognize and remember me this way! Of course as soon as I open my mouth and put on my tiara it all comes flooding back.

Most people want to know what I do when I'm here. And basically it's easy. Wait for a blood draw, get a blood draw, wait for an injection of radioactive contrast, have an injection of radioactive contrast, wait for a scan, have a scan, wait for my meds, take my meds, order a meal, wait for a meal, eat a meal. Then repeat multiple times during the day. Boom. There you have it. No more need to wonder. You are now fully informed.

Keith told me last night that he admired me for getting through the days here.  Patience has never been a virtue I possess and I can see how it would seem crazy that I can manage days that revolve around waiting for something or other, and laying in scan tubes for hours without totally losing it . I can see that, but understand my point of view. If I got my knickers in a knot it would just make everything worse and why would I want to do that?  I don't have a choice about what happens here. My control only goes so far. But I still have control over the way I think about it and deal with events. As long as I control that everything else is manageable. Not to mention that all I have to do is take a look around at the other people on my ward and the kids 4 floors down and I remember how lucky I am to be doing as well as I am. And I owe all of that to the people and process here. Consider these knickers un-knot-able at this point. Besides, I have hair and fit into my pants. Need I say more?...

I'll try to post more as the week progresses and the test and scan results come in. We are hoping that a tumor is found and in addition to all the usual scans there is a new one that's being tested that my doctors think may be the ticket. Of course if a tumor is found then we have to decide what and when to do something about it. Which will be hard and complicated. But we'll cross that bridge when we come to it. There's always the possibility that nothing will turn up and I'll be sent home to endure the same "wait and see" merry go round that I've been on for the past year. Right now I honestly can't decide which to hope for, but I probably go toward the don't get your hopes up side. That doesn't mean that you all can't hope they find something. In fact, please do.

Well, I have to call for my lunch and wait for it to come. Another exciting day...