Hey gang
Sorry I’ve been quiet lately – I saw that there was some franticness a bit earlier before Barb stepped in with an update. We’ve gotten to another one of those tired spots, where we realize we’ve been in a constant fight for fifteen months and a sporadic fight for a couple of years beforehand. We’re both getting tired and worn out, but The End is Near. No, not that End – the good End.
I think today is Day +37. I’m a bad SCT patient, ’cause I’ve never been able to keep up with my days. Makes sense though, since most of the times I can’t keep track of the days or dates. I saw SuperCoop and he says I’m ready for radiation. I got a call from the rad onc’s office a little bit ago and I’ll be seeing him on Tuesday. It’s either Dr. Rogers or Dr. Roberts, I would assume that depends on how beautiful Tuesday is in his neighborhood.
The actual results for that PET I had in the hospital were in, and said pretty much what SuperCoop told us – other than the kidney problems at the time, no Hodge was showing up. No talk of NED or remission or the like, but they agreed that the alien is gone. Not a whole lot of celebrating in the room, primarily because SuperCoop had already mentioned this and after going through surgery, it had better not be showing up. Plus SuperCoop was a little miffed that the thoracic oncologist got all the credit. “It says it’s gone after the surgery, but I gave you chemo afterwards to get rid of the stuff he missed and I don’t even get a mention!” I did notice that he was mentioned as being there looking over their shoulder while they read it, though I believe the phrase “pain in our ass” was redacted. SuperCoop’s the Man.
So now I just wait for Tuesday to see what/when happens next. My tastebuds are still majorly out of whack, but I discovered last night that Eggo’s taste good, so I’ll be burning myself out on those pretty soon. The homestyle flavor, not any of those fancy city-boy flavors like blueberry and whatnot.
So far, other than the mental struggle, that’s been the worst thing about the SCT experience – the tastebuds. They’re so screwed up it’s hard for me to eat, so I don’t get any energy, so I’m weak, so even when I feel up to eating, I’m too tired to do anything about it. If I could just get the food thing going, I’m sure I’d already be over this – it’s just at this point, I can feel the little bit of energy I have drain out of my arms and legs when I try to do things. Everyone says I need to force myself to eat, but there are very very few of those everyone who know what this is actually like.
The one thing I’ve found that’s consistently good to eat – Taco Bell crunchy tacos. Go figure. So far I haven’t burned myself out on those, but I am getting to the point where I can’t look at sweet or sour stuff anymore.
Since I feel like I’m just rambling at this point anyway, I’ll bring up my latest eye exam from the day before yesterday. The band of color I was seeing has mostly faded away, though I’m still seeing the arc in my right eye. I saw Dr. Portela, retina fella (if that didn’t make you laugh, say it out loud), and she said the spots they saw in my right retina a couple of weeks ago are getting smaller. They still don’t know if that’s the cause of the band or what else might have caused it if it isn’t, but at least things seem to be improving. This time I wait a month before a re-check.
So there you have it – the latest on me. Now I’m going to go crawl back in my little cave for awhile again. I’m sorry I’m not posting more, but I’m a little too tired to censor myself, and I’m afraid of letting out something bitter and angry in my current mood. You all know how that goes – good days and bad. So, once I have another good day or Tuesday arrives, I’ll be seeing you again…