It’s likely that my original estimate of 540 days left (18 months) is probably a bit too pessimistic. Looking at the two scoring systems with the limited data I have it is more likely to be around 1100 days to go. I found a more detailed book on MDS and had some trouble reading it since the end game with it is pretty grim, lots of things going wrong but heroic efforts at ER to stay alive (albeit with unpleasant side-effects). Since none of that is happening yet and it looks like at least 365 days of that, still to happen, 529 at this point is most likely too short. Mixed feelings about that idea – longer to live, longer to suffer. But it’s amazing how the mind works as I really don’t think about this much, at least while I don’t have any unpleasant symptoms. Yesterday I had some brie and thought a bit about eating the rind, normally OK (some people don’t like it), but probably not an option for me in the not so distant future. Lots of behaviors to change when I can no longer count on my neutrophils.
Apparently blog readers don’t like hearing about this stuff. I suppose it doesn’t make any sense to say you “like” a post of a fatal disease and maybe people don’t want to hear about it. But one slight advantage I have is that I know I won’t live long enough for the Repugs to screw me out of the Social Security or Medicare that I spent my entire life paying into (it’s not welfare, you douchebags, I paid for it and chance are, at least for SS, I won’t receive as much as I paid). I used to worry about living to 88+ (the age of my dad, my mom’s still alive at 99) since 2045 is likely to be a sucky time in this country with the irresponsible way the Repugs have gutted the public treasury. So chances are I’ll be gone before the Repugs pull the plug on the rest of the baby boomers so the 0.1% can get even more tax breaks. Some day the stupid tea baggers will wake up and see what they’ve done but it’s going to have to get a lot worse first and bash them over the head before their tiny brains get it. But no need for my rants on this any more.
Meanwhile I haven’t managed to arrest my weight gain and every type of chart I have now says I’ve gone too far. I have no doubt, without my other health news + an actual plan (sometimes, just an excuse) to let my weight drift back up, that I could have probably maintained my lowest target during this time, but it sure was fun eating more and some of the high calorie stuff I avoided like the plague while on my weight loss kick. But I have to resume some of my discipline and back off just a bit and try to stabilize a couple of pounds below where I am now. Who knows when I’ll actually be taking the types of treatments that will really blow off my weight and probably drop me below the minimum I deliberately achieved. But I’m not looking forward to looking like a death camp inmate and feeling like one, so at least I’m enjoying eating at the moment.
And here I am back at Starbucks, even though the remodeling has messed up my previous pleasant Sunday excursions. I figure I should do this whenever I can since at some point being in public places with crowds is probably too risky. So enjoy it while I can. I haven’t fallen from their expensive gourmet coffees though; I was almost tempted today since they have Jamaica Blue Mountain and it’s been a long time since I used to get that for home brew (at about the same price per pound as a single cup costs at Starbucks). Back when it was only a couple of bucks more as a premium it was worth it, then some hurricane destroyed the trees and even after they came back the price has been too extreme for the relatively small incrementally better taste. Actually that’s the way it is with most high end things.
And we did commit (in the form of some reservations) to another vacation, a swing through southern New Mexico and Big Bend area of Texas (ugh, hate to go to that awful state that is now trying to ban women from voting, what aholes!). Along the way I hope to find an ancestral cemetery with a couple of generations of my dad’s side of the family; I was there once with him but really didn’t know where it was so it will be a bit of search (given I did find coordinates of all the cemeteries in Kansas) around Abilene. So an adventure – not quite a pilgrimage on the Camino de Santiago, but something.
Well, this seems like enough random thoughts for a while.