So things didn't get better...I slipped further and last Tuesday I went to my scheduled appointment...when she saw me the choices were go home for a matter of a few hours or days. or come up here where I've been for a week and hope we might stretch that...a bit. My pulmonologist has always played straight with me and though they don't like putting dates on things like this, I kind of asked "days" and got a bit of nod, "weeks" and got a slower nod and when I asked month, there wasn't really one. The primary, much more optimistic is telling me to figure on being at the boy's birthday party at the park next month and watching Indy and Monaco on Memorial Day; that July 4th or another road trip aren't out of the realm of possibility. I'll take whatever I can get, but am still a realist. I'm not sure I'll get here again...between the whirl of family, trying just to deal with a lessened ability and also I have to admit that mentally, the diminished oxygen I'm receiving is having an effect. Before if my sats dropped below 94 I was in pain and at 92 it became intense...a 7 to an 8 on this lovely scale everyone likes. I'd let my numbers rise and then "go" again, or turn it up, or find another cannula. This last few weeks I was up to 4 lines to try and shower.
They have come up with a pain regimen that alleviates that and right now I can be in the low 90's or even the upper 80's and not hurt, so they've been able to reduce my usage back to something more "normal" for someone to have at home. That will help a lot.
The best guess is that the tumor (number I heard the other day was 18cm and quadrupling regularly) is doing some other things as well, or the cancer is spreading and masking itself as the IPF. Not sure how much I'll be able to "get around" once I'm home, but being there is wonderful!
I have most everything dealt with except for tagging some books as to which grandparent or relative they came from; if I can get beyond that I'll try to do it to some of my favorites as well. I found a Library of Congress article that said as long as you use name brand 3M Post-It notes it won't react with any paper or ink; use of any other brand can (and they showed some sad examples of eaten pages).
If we can't deal with it at home then I'll come back here to their care center...it's not home, but still nicer than the ward.
I always envied Bing Crosby, flying over to Spain to play golf with some friends and dropping dead from a heart attack. I know none of us get to choose, but wow...
I've learned much from those I've met here; I've seen the world through eyes other than my own; I've seen things I'd never have been blessed to otherwise. Everyone keeps telling me "you'll be around, you won't be gone"...I'd like to think I'd been that good.
In the settling of things my sister asked me "what about memorials"? I asked what she meant and she said she assumed, since I had said no traditional funeral service, that some people would want a place to send money in lieu of flowers. I told her I'd never dreamed anyone would do that for me!
I thought about it a while and then decided that the "Old Rhinebeck Aerodrome" we visited the last summer would be a most delightful thing I could dream of! You can contribute to maintain the place, the aircraft, etc., you can even look through and pick a particular plane or building. When we were there they had just assembled wings and fuselage on a replica of the "Spirit of St. Louis" they are putting fabric on now built from scratch! There is a Liberty V-12 engine there from WWI that they still run that I love very much, along with lots of aircraft. A hangar always needs patching; there's always a tool someone needs...then there's that original Bleriot they still fly as well! Dottie's personal pet is the new Visitor Center that will have more handicapped bathrooms available and a better location than the current. They had broken ground last I knew and had most of their fund, but things never cost what you think they will, lol!
Thank you all for sharing your lives with me! It's been grand!
May the world be kind to each of you!