Tuesday, April 07, 2015

End game...

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!

alan

7 comments:

robin andrea said...

Oh alan, this post breaks my heart. I am so sorry that it has come to this. I do hope how ever you spend these next few days, weeks, and months will bring you calm joy and peaceful happiness. I hope you are surrounded by love and beauty. I will check out the Old Rhinebeck Aerodrome to see how to make a contribution. Take care, and know that you will be remembered. Peace.

Fluffy Pink Duck said...

Alan it's been an honour to read about your life, you comings and goings. Much love Jane

Annie said...

Love to you and yours always, Alan.

Anji Knutsen said...

As Jane says, it has been an honour to read about your life. I still have a copy of one of your blog posts which I use for teaching English!

Hugs

Doris said...

Lovely Alan, it was an honour. Your memory will always be cherished and may you feel peace and contentment.

I think your kind words and encouragements have helped so many more people than you realise.

Lots of love xxx

Josephine Shaw said...

Alan...it's been way too long since I was here...I heard that things were looking tough for you, and now I read your words and I see just how very tough.

I am sending love and thanks to you from England. There was a time when I didn't have many friends, and felt pretty alone in the world. I would blog, and seemingly out of the blue, a little group of people appeared to hold me up as I went through my firewalk.

You were one of that group.

Life moved on...I don't really blog now...but I remain profoundly grateful to those who reached out to me back then - some of them from the other side of the world.

You were one who reached out.

People don't have to do such things. It's much easier to ignore, to forget, to pass by. But you didn't do that. You, and a few others, wrote things than helped, and I am really very very grateful.

So, like I say, love and thanks and strength to you my friend. You made a difference to me and helped me get through the worst period of my life.

Jo xx

[brilliantgirlgenius]

Blogzie said...

I will always remember you with love.
Thank you for being you and for always making me feel like a special person.
You are one of the good guys.
Your warmth and intelligence was evident in every blog you wrote and comment you left.
You did make a difference in this world.
Safe travels, my friend.
"And in the end, the love you take is equal to the love you make."