Rich is going to Tennessee every three weeks. Every other visit (so every six weeks) he gets a CT scan to assess how the medication is working. It's a horribly inexact measure of progress. The visits are brief (he can fly in and out the same day) and the staff are always pleasant. But the news is not very earth shattering. We don't expect to show up to a CT scan and find that all of his slime has shrunk away. So we bide our time with statements like "no growth, no fluid". That statement can be taken both ways.
Sure the slime isn't growing that we can tell. But it took years to notice it in the first place, so even if it were growing, I'm not sure we could tell. I'm not sure that the CT scan from January when he was not taking medication looks much different than his latest one after three months of medication. So it's a bit like taking a pill to keep tigers away. No tiger attacks yet. YAY!
Rich has very few side effects from our anti-tiger/slime medication. He is more prone to heartburn, though that could be stress related. Tomato products exacerbate that but he is unwilling to give up Mexican food or meatball subs so he just takes a dosage of Zantac that made the pharmacist ask, "Are you sure this is right?" His upper belly (right below his rib cage where the slime buildup is thickest) feels tight at times, but with his barrel chest and clothes, the world would never know. He's wearing all the same size clothes. He's playing all the same sports. He killed 21 people in one battle at Pennsic. So it would seem other than the time and expense of jaunts to Tennessee, life is relatively normal.
And yet, it's not. Rich is more irritable than normal. He's worried. He's unsure of his own body and what it's doing.
We all thought that CT scans were supposed to be virtual photographs of one's insides and yet it's more like the Rorscharch test of medical diagnosis. (Funny side note of a joke by Bob Newhart that ordering those cards must be awful. "Do you have any more of the three guys playing pool?" "No, but we've got three naked ladies fishing in a boat.") The CT scans we took in 2007 told us nothing because it was too soon to notice anything. The CT scans from October pre-surgery seemed like a textbook case of green slime to be extracted. After that "hunh" moment on the operating table, we're all a bit more dubious of what those scans actually tell us.
And unfortunately, right now, those scans and how Rich feels are our only markers for improvements. And Rich feels ... worried.
All this sounds depressing, but there are bright spots. Rich says that he felt great at Pennsic. His joints were fine, his stomach felt fine (I took note of the distinct lack of Mexican food on our medieval vacation), his back felt fine despite sleeping on an air mattress in a field. Have I mentioned he killed 21 people in one battle? So possibly a lot of this is stress related where having a vacation and being physically active keeps his mind off of things.
But we are back in the thick of things here in the modern world and that takes its toll on Rich (and anyone else in his immediate vicinity). He has another check up next week where they will just draw blood and dole out more pills, but I'm going with him on his trip in September for the CT scan. From 5am until 8pm we can pretend we're on vacation and have a delightful lunch somewhere. It's not quite Pennsic, but perhaps it will brighten his mood.