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!


Wednesday, March 25, 2015

Sometimes I wonder...(thinking of the lyrics to "Stardust")

I slipped out on a bitterly cold evening last month just after I last wrote to attend a ceremony for my youngest grandson as he "bridged" from Cub to Boy Scouts. It was single-digits outside and though it's only 15 feet from the front door to my side of the truck when she pulls in to get me, I got a couple of lung fulls of very cold air that made them ache like they hadn't in ages and for longer than they ever had. Usually the pain subsides in 10 minutes or so; this time it was over a half hour before the ache let go and my O2 saturation percent came back up to 98%.

A few hours later, leaving my son's from the "after" festivities, it was the same thing. When I screw up and make them ache that way it usually takes a few days for the "tired" and the "ache" to let go. This time, not only did it not want to let go, but all of a sudden the machine settings that used to maintain me wouldn't: I needed higher settings, more oxygen, more bottles across the board. I had been showering with 3 oxygen lines; it turned into an almost impossible struggle...

I ended up back on antibiotics as well, because I picked up something that night, but even when they and the steroids started to work, things didn't improve. I figured out management strategies to "get by", sometimes not being able to charge the refillable bottles, using my portable in addition to the house machine during the day.

I saw the heart doctor a week after this began and he explained that when your lungs hit cold air they choke off the bloodflow so you don't lose all your body heat; when your lungs are already compromised, you can't give up any bloodflow because you're already not getting enough oxygen. That made sense; he said it's usually a problem for cold weather joggers and runners.

The same week I saw him the "miracle drug" showed up and I started on it.

4 weeks into it a fever kicked up again; I'd already discussed with the pulmonologist the cautions that were packaged with the new drug about it being a blood thinner and that you should avoid other drugs that are and was told that I needed to do what I need to to control the fever. That worked for a few days; the fever went away with doses of tylenol, aspirin and ibuprofen two hours apart. I stopped those on Saturday.

My lungs produce phlegm from the fibrosis every day; some days it's a "productive" cough and I can get rid of some of it; some days it's not, and I can feel or hear the stuff but it never makes it out. On the new drug things seem to have been much more productive, right up until there was pink on Sunday morning and a brighter red in the early afternoon. It faded; I figured I was off the thinner regimen and it was a fluke; Monday it was back and faded again. Tuesday there was a brighter red and a larger volume of phlegm and I started panicking a bit-perhaps I've seen too many movies with portrayals of TB in the last century, but I ended up calling the doctor. I see her next week anyway, she said as long as it doesn't worsen not to worry and add a chest x-ray to the bloodwork I'm having done before my visit next week.

Today there has been some pink again, but no real "red", so I'm going to take that as a good sign!

I've been spending a lot of time reading this last week and watching old movies. I introduced my granddaughter to "The Philadelphia Story" a few weekends ago and she enjoyed it so much I think "Bringing Up Baby" might be in order next time she comes!

I hope life is being kind to each of you!


Friday, February 13, 2015

A bit of green is showing in my lawn...

though it's still colder than I'd like outside and going to get even colder the next few days.

   I'd never intended to let 2 months slip away without finding my way back in here again, but I've been either busy or miserable, without any in-between. The holidays, the family gatherings, the visitors...the respiratory bug I fought from just before Thanksgiving until the last few days...it's been a lovely winter so far!

   Finally I seem to have shaken it though; I finished my umpteenth round of antibiotics a few days ago and though I cough a bit of stuff now and then, it is clear and seems to just be my fibrosis at work instead of anything more sinister! I've seen the pulmonary doctor twice since we last visited and had a follow up with the cardiologist this last week, partly an annual because of my episode 23 months ago and partly because if I can get that new fibrosis drug they wanted an echocardiogram done to make sure everything was OK.

   Dottie and all of the kids and grandkids are doing well. It's amazing to have been granted another cycle of the sun to watch everyone grow and change. I was diagnosed 2 years ago December and really didn't figure to still be here; instead I'm really not in bad shape for the shape I'm in!

   This last week I've finally been feeling good enough again we slipped out to a few movies. Dottie really likes the "Hunger Games" movies, so I got her to the latest in that franchise, then the next day we saw the final Hobbit movie. Yesterday it was bitter cold again, so instead of going out to the movies I got her to watch the first movie to win Best Picture with me, "Wings". Bill and Laura bought me a BlueRay of a lovely restoration of it to replace my old recorded-off-the-air VHS. Quite a treat, recorded with an orchestra playing the original score. It actually holds up very well across the years!

   Still no news about the new drug. The pulomonlogist has submitted paperwork and resubmitted, as have I; we're waiting to hear if there are more hoops to jump through or if the company is going to grant me the drug gratis...I can't imagine many can afford $320 a day for it!

   I'm starting to cautiously look towards spring and think a bit about traveling a bit once the snow and ice are done for the year. I saw footage a few weeks ago of someone climbing the ice at Niagara Falls from exactly where we were only a couple of months before that...hard to believe I was there in sandals!

   I hope the world is being kind to each of you!


Saturday, December 13, 2014


I've started to put my head up more than once here the past 6 weeks, but every time I can almost see over the edge of my burrow, it feels like someone takes a swing at it! Thus my reference to the arcade/midway game...

Healthwise, I'm doing OK; one small round of a bug and a different kind of round with a crown that decided it didn't like the molar it was on after 20+ years. It got pulled last week; stitch came out and all seems fine there as well.

The Christmas tree is up a bit earlier this year; though every year the promise is "smaller" the tree is once again larger-about 7' tall and about as wide, lol! It will be interesting to see Liam's face when he comes in the door and sees it...I know he already thinks we're crazy...and he's right!

We've gotten some wrapping done and the shopping is almost complete; perhaps it will really be a "soft landing" this year instead of the all night thrash it usually turns into! (Fingers crossed!!!)

I'm so saddened by much of the news of late; death in the streets everywhere, every day; men that think they have the right to rape, be it those in foreign lands or my childhood heroes...I've always been wary of idols because of the old proverb about their clay feet, but didn't really expect that one...

Then there's the old East Coast sausage grinder mincing bits of the EPA, campaign contribution laws and even part of the Apache Indian reservation (really, Mr. McCain?) to make an exotic premium variety for Wall Street. I might go figure out which den the groundhog is hiding in and wait to stick my head up again until he says there still is a sun, let alone that it might shine again someday!

Yes, I know it could be worse...I keep telling me that, yes I do! I guess that a calendar's whirl from 60 I'm just having trouble convincing me!

I am truly grateful though, to each who still find their way here! I hope the holidays find you surrounded by love and light and warmth and that the New Year brings each of you the smiles you've each brought me!

May the world be kind to each of you!


Monday, October 20, 2014

A bit "Spindletop"!

(meaning, forgive me if I gush a bit...)

We slipped away headed East after my last post. Originally we'd intended a fall trip to a cluster of museums around South Bend, IN. that were "on my list". But if we were traveling that far East we talked about extending a bit to see Niagara Falls (we'd driven by it for 36 years as we went to and fro on the Vermont trips). If we were going to get to western New York, there was another place on my bucket list in Eastern NY; getting there it would be a shame not to skip over the mountains into Vermont and see family again. The timing of all this hadn't even dawned on us until we started trying to book rooms (peak color season).

So South Bend went on hold, she changed the oil in my truck and we bought a portable oxygen concentrater of our own (because the O2 company lent me one last time cobbled from parts that didn't really provide enough to get me totally off of bottles, and this time said they didn't have one at all until late October and then only for a week).

We split the run to NY into two days because 8 is about all I can ride anymore and still have time to take my diuretics-the days of driving straight through to anywhere are long gone!

So our 3rd morning out we awoke a few minutes from Niagara Falls State Park. We went to the "Cave of the Winds", down an elevator shaft and along a shelf in the cliff face, then out onto a set of wooden walkways that lie alongside and partially under the Bridal Veil Falls.

(click on each photo to enlarge)

They gave us rain ponchos, sandals and plastic bags to put our shoes in. I was very glad we had bought a water resistant cover for my Nokia phone (the camera I'm using now, as I can't deal with the wheelchair, the oxygen and the Nikon). Though we didn't go up onto the "Hurricane Deck" we were as wet as we really wanted to get before we went back up to the main park!

We went back up (much work for Dottie, as my lungs don't allow me to do much to help propel my wheelchair) and ate some lunch as we dried out a bit, then she rolled me to the overlook of the American Falls. There is a new section of walkways they are completing that will get people much closer next year. I shot a few movies just to record the amazing sound of 150,000 gallons of water per second as it crashes onto the rocks below!

We made a loop around Goat Island on the Park Service trolley (equipped w/wheelchair lift, thankfully) then rode back past our intitial starting point to visit the overlook for the Horseshoe Falls, but it was much too long a "drop" to go down to actually see it (getting down would be easy enough, but there's no way Dottie could push me back up and it was much too far for me to walk, even with two bottles and cannula. I can do short distances that way, or flights of steps, but this would have been several footballs fields of long grade). My phone seems to do well until I zoom it past "medium" focal length, then it begins to distort, so I haven't included the photos of the Horseshoe Falls here. But if you ever get a chance to visit, it's sooooooo worth your time!

The next morning we were eastbound again for a little place south of Albany named Red Hook, NY-the home of the Old Rhinebeck Aerodrome. I'd first heard of it years ago when I saw Neil Armstrong visit there on a PBS series he did called "First Flights". Only a few minutes south of the route we usually take into Vermont, I'd never wanted to give up the family time to visit; it was always too precious and hard to get to spend it selfishly. 

Up early on Saturday we visited their museum hangars and the gift shop that lie across the road and up the hill from the main aerodrome. We got back to the grounds in time to get some lunch and get seats as they started flying at 2PM. The Saturday air show was pre-WWI to pre-WW2 aviation. One of the first things up, as it was a calm day was them flying an original Bleriot monoplane with original motor!

They only take her up about knee-high off the ground, as they don't want to take a chance on anything happening to her, but to listen to her as she taxis and see the ease with which she does take off makes her seem much younger than her 100 years!

Other pre-war aircraft flew, one taxied and gave control demonstrations of some of the early "less intuitive" systems that were in use before everyone settled on one. (Remember Beta vs. VHS? Try it when your life is in your hands!)

Another bit of loveliness for me is to be so cold to lovely old motors like the Curtiss OX-5 in the pusher above. Notice that the valves and rockers are all out in the breeze? Meaning their oil is as well? Motorcycles and early cars were the same way...an old Harley or Indian will waterproof you nicely from the waist down! The early pilots wore goggles as much to keep the oil from their eyes as other debris...

Many cars, a few motorcycles, a WWI Renault tank...all running are among the other vehicles on display. The airshow on Saturday closed with a lovely Stearman biplane "wringing it out" for the crowd. Before and after the airshow there is a biplane offering rides over the countryside. I begged Dottie to go so she could come back and tell me about it, but she wouldn't because she said it wouldn't be fair. 

We actually had a sit down dinner that night instead of "road food", then a good night's sleep (after we bought wire ties to fix my wheelchair as it didn't like its off road experience). The next day, up early and back to visit the buildings and displays at the lower end by the airfield and talk to one of the owner/builder/pilots who was kind enough to take me "under the rope" and give me a personal tour of his DeHavilland biplane. (Built in a 2nd story Manhattan apartment!)

The airshow the 2nd day was the last one of the season for their WWI dogfights. But before they got to the Fokker Triplanes and Spads, they rolled out another icon, an original 1917 Curtiss "Jenny" complete with the original 1917 motor!

A lovely fall afternoon; the color growing more intense in the background each day; vintage aircraft on the ground and in the air-it was a truly wonderful afternoon!

I can't imagine being able to make wood do what they did for the fuselage in this lovely work of art in the frame above and again below here!

I left with hundreds of photos and dozens of movies, though I'm still learning my new system. I've also seen some "add on" lenses for it, though they require leaving the armor cover off it and I'm not sure I want to risk that!

Monday found us headed over the mountains to Vermont. The run through Bennington was very close to peak color, then things were greener again as we headed north towards Northfield where Dottie grew up. We visited one sister on the way up and headed out to try and catch sunset at a favorite spot before we went the rest of the way to Williston to our room.

As we roamed the state over the next week we were in and out of color as elevation and distance from rivers and streams changed. Every day there was some new brilliance and a lovely view, even when the weather wasn't what some would call "good".

Around the corner from one of the sister's houses was a haybale sculpture that was too cute not to catch a photo of. The "please don't touch" signs are chest high!

Finally the time came to turn West again. We left on a route we'd never taken. We crossed into New York on a bridge below where Lake Champlain narrows and cut across New York through the Adirondack State Park-one of the most beautiful drives I've ever had the pleasure of!

As we approached Hammonsport, NY (our next destination) we saw a lot of New York that was new to us. We crossed and then drove alonside several of the Fingerlakes and both rather fell in love with some territory we'd never thought we would.

Our last stop for the trip was at the Glenn Curtiss Museum at Hammondsport, NY. I truly didn't know that much about Curtiss, other than his patent wars and lawsuits with the Wright Brothers until the last few months. I've come to a new appreciation of him, not just for his feats in aviation...

Built it, rode it and set the world speed record on it...in 1906...at 136 m.p.h.!!! 

The more I think I know, the more I find to learn!

I picked up a cold somewhere in my travels that set in that evening and has had me pretty miserable since. Deep hacking cough that goes on for so long I lose my oxygen and my ribs ache. It slowly seems to be getting better, but in a day or so if it's not markedly so I'm going to have to call someone and may end up having to turn myself in to get some IV antibiotics. The idea of setting foot in a hospital and catching something worse is more frightening than anything I've been through to this point!

I hope life is being kind to each of you!


Wednesday, September 17, 2014

When you know the right people...

wonderful things can happen! I've found so many of them through the years and the doors that have opened have amazed me!

One of those belongs to Anji (a link to one of her several blogs), who among her many interests, deals in antique postcards. I had purchased some beautiful sets she assembled and gave them to my daughter-in-law a few years ago; antique postcards of flowers made into arrangements that were wonderful pastels and and made a nice wall hanging for her.

Given the "rabbit hole" I've been in of late, I visited her a few weeks ago to see what I might find in early aviation postcards, thinking I might find one of Louis Bleriot's monoplane. Not only the builder and pilot of the first successful monoplane, he was also the first to fly across the English Channel. When you conside the state of aviation in 1909, the reliability of engines, etc., his fame is well deserved!

My search had my eyes misting as I not only found what I'd hoped, but also two pristine original postcards of Wilbur Wright's visit to France in 1908 (the upper two cards below). They tie in to my current reading (the rise and collapse of the Wright company).

The 3rd card is of Glenn Curtiss airborne over Hammondsport, NY. A motorcycle racer turned aircraft builder, among many things he's considered the "Father of Naval Aviation". The last frame belongs to Mr. Bleriot.

This hangs next to my side of the bed where I see it first thing each morning and last at night as well as numerous times through the day. Thank you, Anji!

I mentioned my mother-in-law recently and was asked to write more about her. There are so many things I wish I did know! I know she attended Cornell for part of her college, then moved to one closer to home. Given it was the Depression, I don't know whether it was due to financial issues or other things.

I know her favorite band was Artie Shaw; she told me of dancing not only to the Shaw band, but Miller, the Dorsey and the Goodman bands as well when they played college dates. You can imagine my envy of her getting to hear those in person! One late night in her kitchen in Vermont when I was playing some cassettes of Bunny Berigan with Goodman's band we were discussing the possiblity of traveling far enough into space to catch the AM radio waves and record the radio broadcasts of the period with modern recording techniques...I've been assured by my oldest, the astrophysicist that they would be distorted enough that it wouldn't be the same, but it's still a nice thing to dream about!

After the war she worked a few more years, then gave it up to settle down, marry and raise a family. She still did some projects from home; the girls remember being given a set of disposable razor handles that she designed injection molds for.

I know she didn't renew her licenses one year when my wife and her siblings were little. She and the girl's father were both working in a mill in Vermont full-time and still having a hard time making ends meet. At the time groceries and heat were more important. I've been there!

It wasn't long after we lost she and my Dad within a year of each other that I started making a point of asking my only surviving grandmother lots of things about her history; I learned a lot; part of it I got on cassettes I should be making a point of transcribing to disc before the oxide peels from the tapes. I wish I'd done that with my Mom's parents, my Dad and Marion as well! They say hindsight is 20/20. I sometimes think 20/10!

I had a couple of good doctor's appointments in the last 10 days; there has been a bit of improvement in my lung percentage. It's thought to be due to how long it's been since I had my last chemo. The cancer doctor said "keep doing what you're doing". I'll have a CT in November so they can really peek behind the scenes; until then I just have to ignore each ache and pain and quit worrying about them, and try and avoid the fall flu season! I went and got my shot the first day I saw them available.

I hope life is being kind to each of you!


Monday, August 11, 2014

Diving deeper...

and juggling multiple books and sources, I'm finding myself amazed at all the things that can play into/hinder rational decision making!

Concurrently reading a Packard history of non-automotive engines and hit their WW2 building of the Merlin (Rolls-Royce aircraft engine, most notably used in the P-51 Mustang) at the same time I got to them in a memoir by a Rolls-Royce engineer who was very involved in it. Mixing that in with some of the politics that I picked up at the Churchill Museum in Fulton, Missouri and the Eisenhower Presidential Library in Abilene, Kansas and reading a bit more on key players, I'm convinced we're lucky to have survived!

My "light reading" this past little while, among all the technical things, had been "Lost Horizon", the James Hilton novel from the 30's. I've seen bits of the movie, and love Ronald Coleman, but have always avoided the movie because I wanted to read the book first. I finished it a few days ago, and last evening, when my brain had been sufficiently "stretched" by all the "heavier" reading, I dug out one of the Will Rogers books I've picked up this summer "Letters of a Self-Made Diplomat to His President".

I saw the cancer doctor a few days ago. He said he heard nothing that caused him concern; he didn't mention scheduling any tests, just made sure I had prescriptions ahead for my antibiotics and prednisone to try and finish getting through this round of lung infection and another 2 for next time.

The only friend I have that goes back more than 30 years has moved back to Kansas and bought a farm, so we took a day trip on Saturday to visit him and meet his "new" wife and daughter. It looks as though life is finally smiling on him, and the day "in the country" was wonderful! I'm looking forward to a return visit soon!

Between sorting some plumbing issues here along with some other odds and ends as well as having my brain "picked" over the phone to troubleshoot some things, I'm feeling not quite so useless this last week or so. It's kind of nice to feel like I'm contributing something to the world instead of just watching it go by!

May the days be kind to each of you!