Saturday, March 23, 2013

It was 40 years ago today...

that I "signed my life away", enlisting in the Navy. 17, 2 months from graduation and absolutely sure that no matter what else I did, staying here was not an option!

Probably a good thing; my Dad had already made me refuse a full-ride music scholarship and getting us as far away from each other as possible for a while was the best thing that could have happened...

Looking back over the years, even with all that's going on now, I wouldn't change a thing!

Every now and then I look for a ball cap with my old squadron insignia on it and a few weeks ago ran across this:

That was one of the aircraft I worked on; flew in sometimes, and was even lucky enough to get a bit of "stick time" in. Those are my WestPac cruise dates as well. Of course, when I tried to buy the print, it is no longer available, but I'll consider myself lucky to have found just the jpeg!

I was released from the hospital late on Wednesday night and have spent most of the last 3 days being very lazy; sleeping late, reading and watching a bit of TV. I fixed dinner each night, but that's about all I've done that was "extra". They said the "sotolol" they put me on to control my heart would make me feel tired until my body adjusted to it, and said it would be a week or so. I'm willing to take their word for it. I can tell about 30 minutes after I take it there is a "drowsy spell" before I feel like even moving again!

I did finish "Gondal's Queen" while I was in, began reading Vita Sackville-West's "Selected Essays" but when I got home I couldn't resist picking up Irene Nemirovsky's "The Wine of Solitude". I'm finding myself looking for every excuse to slip away with it. Sadly, it doesn't appear to have been read by anyone despite 2 years on the shelf at a major university.

I have chemo again this next Thursday, so if I don't blog before that I'll try and get by after just to say "Hi" and let you know I'm still around.

May the week be kind to each of you!


Tuesday, March 19, 2013

A different view of life...

from the 9th floor of the hospital, lol!

There's enough sky up here that even on a dreary day it's nice,  but yesterday as the last storm broke up and the clouds were roaring off to the southwest at 60 or 70 it was really something to watch! Or perhaps just being here to see it heightened the beauty...

3:30am Monday morning, about 3 hours after I dozed off I woke up from dreaming of playing trumpet again. My chest ached, I figured I'd been breathing "wrong" and sat for a minute, doing my "pursed lip breathing" to get things under control, and the pain in my chest seemed to ease a bit. I went to the bathroom, came back and slipped my mask on and did some more pursed lip breathing then, feeling better, laid down.

The pain went from a 4 to about 8.5 immediately and I sat back up, tried breathing some more and it didn't ease and while I wondered if something was wrong with my oxygen concentrator I shook Dottie awake and asked her to get my oximeter. When she did, it read "99" but said my pulse was 147, then 110 something, then back up to 150 something...very erratic! I left it on, motioned for the blood pressure cuff; she got it and it "errored" for BP but confirmed the erratic pulse. The pain was still about 8, and I had her start getting me clothes; we grabbed my portable oxygen bottle and headed for the emergency room.

They admitted me, started drugs to control the arrhythmia and some heavy antibiotics to control either pneumonia or bronchitis. Within a few minutes the pain eased, though the numbers were still all over, clear up into the 180's at some points. Within a couple of hours I started coughing up lovely yellow green stuff as well.

After I was out of ER and admitted a cardiologist came to visit and explained that the IPF already restricts how much blood the heart can send to my lungs; an infection on top of that restricts it even further and when my lungs tried to choke off the bloodflow they didn't need my heart didn't know what to do, hence the arrhythmia. It finally went back into rhythm about 24 hours after it started and I'm down to one IV with a blood thinner in it; they've started an oral med to control the arrythmia and I'll be going home sometime Thursday after they give me the 5th dose of the oral medication to control the arrhytmia and run an EKG to make sure it works perfectly.

Until then I'm hanging out up here in the rarified air, reading and (now) writing a bit and perhaps digging out that mp3 player in a few minutes, thanks to the care packages my wife and son have dropped off last night and today.

I wasn't sure I'd see the sunrise yesterday, and got a bonus one today; I'm looking forward to each!

May the world be kind to each of you!


Friday, March 15, 2013


my body's reaction to being poisoned is to wait a week, then start a couple of rounds of fever, chills and shakes!

There was a bit of them on Wednesday night, but I just figured it was "night sweats" which have come and gone through the past year or so. But last night at bedtime the fever started climbing, I started rotating aspirin, tylenol and ibuprofen every two hours and went through about 10 hours of up and down, sweat and chill. Finally getting up at noon today, they seem to have back off a bit. The same thing happened exactly a week after my first round (the day of the snowstorm) so instead of it just being a bug, I guess it's my reaction to chemo.

I got the statement for my first round of chemo the other day. I could buy a very nice car for $27,000! I'm lucky this time as my insurance paid all but $65 of it. I went and met the Benefits Rep from GM the other day at the Union Hall (because security will not let me into the plant with an oxygen bottle). She's someone I've known ever since she hired in working in the area below mine in the "old plant" in 1980.

She said she would get the rest of the things Blue Cross hadn't picked up paid, except for my office visits and "facility fees" which aren't covered under "Traditional" Blue Cross. She also said they were finally offering a "Blue Care" option again that works like the old "Preferred Care" I had years ago, and that if all of my doctors are listed under it then my primary care doctor would only be $25 a visit and specialists would only be $50.

We gave her photocopies of all the statements and bills and I signed a release for her to be able to deal with them, then she told me that even though she has 33 years she's being laid off for 3 weeks starting Monday, but if I didn't mind, she was going to take them home with her and work through them and the phone calls while she's laid off.

Then she shook Dottie's hand and hugged me and with her eyes misting said she was very sorry for what's going on with me. I told her it was OK, that I'm glad it's me instead of someone else I care about!

She also put my in touch with UAW legal (I thought they'd taken that away already, but not until next year) to get my will re-written and up to date.

The other news she gave me was that since I've been getting a supplemental retirement that was supposed to go until I was 62, then be cut back when I became eligible for Social Security (whether I took it or not) now that I've been granted Social Security Disability, GM will take that money back now, so when I get my first check in July don't spend it! So instead of making up what I've lost by not being able to work at Cabela's anymore (about $1200/month) GM is getting a raise and I'm going to be within $100 of where I am now, lol.

But the disability makes me eligible for Medicare in two years, so at least there will be some help from that front when the time comes. SSDI also said they set my review for 5-7 years because they don't expect me to be around for it. In print!

I'd like to prove them wrong...we'll see!

I did manage to slip out the other evening after all of that and try to photograph the Pan Starrs Comet-the photo isn't great, but at least I got to see it. There is another next month, and a 3rd coming later in the year, so maybe I'll get enough practice to get a better one later!

(click to enlarge)

Not nearly the quality of Robin's work, which I had seen, but I didn't comment because I didn't want to ruin anyone's day by making them think of me.

And I did remember the images from the "Normandy Then and Now" slideshows I'd shared with Anji, but think I was having guilty feelings about not ever getting around to visiting the American cemetery above Omaha Beach to visit my grandmother's brother. A 2nd cousin finally made it there a few years ago and perhaps I shouldn't feel guilty, but I'm the one who has had the gold framed portrait of him that belonged to his Mom all these years.

May the week be kind to each of you!


Friday, March 08, 2013


Chemo has gone better so far this round. Still the sleepless night before, mostly from the steroid they have me take. Only an hour's sleep the night before, a bit of a nap before Dottie came home last night, then to bed at 9:30 but unable to go back to sleep at 4:30, so I gave up at 6 and got up and started the next round of meds. Still, as long as I avoid another cold or something, I think this is going to be a better round.

My title on this post has more to do with the images that crowd my mind at times like last night when I can't manage to sleep, or flood it when some story in the news sets me thinking, or any of a myriad of other sources, be it a book, or music. Things I've read, watched...

Reading Vita Sackville-West's "Country Notes in Wartime" made me think of the recordings I have of Murrow standing at the entrance to the subway station in London during "the Blitz" and laying his microphone down to record the bustle of footsteps of people trying to escape the deadly deluge falling from the sky. Another recording where he describes people wrapping their children in blankets to protect them from the burning embers and ash falling from the sky as the buildings around them burn while they are trying to seek shelter.

I also think of a friend I made here, Debbie, and her father, building the Spitfires that helped turn the tide in that "Battle or Britain". Also haunting my mind are the images forever there of the Coventry Cathedral, destroyed along with so many other places during the bombings.

Now I also think of Irene Nemirovsky, writing the book she knows she won't get to finish, but driven to try, though she can feel her life threatened from all quarters...

I think of Veronica Lake slipping a grenade into her blouse and pulling the pin out as she surrenders to the Japanese to buy time for the other nurses to escape in "So Proudly We Hail"; something I saw at about 12, my introduction to her and though I have seen her in so many lighter roles (I Married a Witch, Sullivan's Travels) when I think of her that is the first image that comes to mind.

It's funny the things that stick with us through the years! Robin Andrea's photos and stories of walks and creatures encountered in the wonderful world she shares with Roger come to mind often. Anji's postcards do as well, taking me to a world and times and places I'd love to have seen, and others I'm glad I didn't (WW1 and 2 in France).

The Fairbanks Museum and the St. Johnsbury Athenaeum in Vermont are two favorite haunts, not just because they were founded by Dottie's great-great uncles, but because they one is a window into beauty and passion of art, the other into not just nature, but a slice of life from 150 years ago as well. I've revisited the Natural History Museum at the University of Kansas a few weeks ago, my 10th or so in 40 years, just in time to see a lone scout bee moving slowly as he came back to report that there was no reason to wake the hive in their living beehive with its window access on a 40 degree afternoon.

In my mind I can hear the catch in Billie Holiday's voice on a V-disc recording (WW2 steel discs recorded for the Armed Forces Radio Network) in a live recording in Europe as she's singing and one of her all-time heroes and idols walks out onto stage to join her; Louis Armstrong.I can hear Bix Beiderbecke's cornet trading lines with Bing Crosby in "Mississippi Mud" from a 20's recording with the Paul Whiteman band. So many other bits of music that I can hear when there's nothing actually playing...

I wonder sometimes at all of these, whether they truly serve a purpose; why they stick with me so. As the time to add more of them grows finite, and there are so many more things I'd love to read, to watch or to listen to, is there a reason to try? Is it just a matter of comfort? Would my time be better spent trying to do something else?

So many things I would love to have done I no longer can-no building of hot rods because I can't weld or paint or even lift some of the things I could have before IPF came along to take my lungs. I've given away my bicycle because I don't have the stamina to ride it and somehow trying to wear an O2 bottle didn't seem quite safe, either.

Last summer I almost bought a motorcycle, not long before my decline really started. Perhaps an inkling that time was growing short, I'm not sure. I'm glad now I didn't, because even though I could strap a bottle to it and ride for a bit, killing someone else because I laid it down and knocked the head off the bottle and it launched like a rocket doesn't seem fair to them.

At home my life revolves around an oxygen concentrator that incessantly drones in the kitchen. During the day I'm tied to it with 67 feet of hose; turn it to one number to sit and read or watch TV, up a bit to hold a conversation; even more to cook; all the way up to walk on the treadmill or shower (I have to shower with oxygen because I'm too weak after 15 minutes without it and it does further damage to my lungs if I'm gasping for air) or vacuum or go down to to laundry in the basement. At night change the line to the one that goes to the CPAP machine and mask I have to sleep with now to insure I get to wake up in the morning. Even the foam earplugs I sleep in sometimes don't completely shut out the never ending throb of it running just a few feet away.

If I do get away from it, I have to take bottles with me, allowing for extra time "just in case" and the related hangers and straps and wrenches to change them-I can get away for 14 hours at a time, but I'm breathing air that smells of the metal can it's stored in the whole time. When I come home I have to turn on the 2nd machine in the kitchen to refill them all before I can leave again. I have a light one that weighs about 4 pounds that will get me 2 hours or so, depending on how fast I'm moving, and 2 heavier 10 pound ones that last 5 or 6 hours. They take almost as long to refill as it takes me to empty them.

Were it to come to the great evacuation from the city for some reason, I'm screwed unless I take all of them and a generator to fire them from, then worry about getting gasoline as well. I'm still trying to figure out how I'm going to fish this summer and keep a bottle close enough to use the 4 foot hose that attaches to it...

Anyway, sorry about this being such a depressing post, but it's where my head is at this morning and I guess I needed to get it out there!

May you each have a lovely weekend!


Tuesday, March 05, 2013

Sorry for the gap...

  Chemo went well except for my mis-timing the steroid I was supposed to take the day before, day of and day after. It stopped the itch I'd been fighting ever since they'd bandaged the PICC line, and didn't make me sleepy like the Benadryl I'd been taking, so I took it later in the day, not realizing I wouldn't be able to sleep on it. First time I've stayed awake 36 hours since I still had hair!

   The anti-nausea drug they gave me to take that morning (and as needed after) causes blurred vision-not something I'm fond of; I couldn't even read the captions on the TV at one point late that day. I stopped taking it 2 days after.

   They also gave me a prednizone generic to take instead of the Benadryl during the day if I was itching too badly, but it really made me feel "off" as well, so I've just been trying to ignore the itch and taking Benadryl to sleep when I need to.

    I was supposed to get the PICC line cleaned and re-dressed and have them draw blood the Thursday after chemo, and was feeling decent by then. They were predicting a foot of snow that day so Dottie told John to stay in Lawrence as he was supposed to have taken me. We had about 3-4" on the ground by the time we got ready to leave. We called to make sure the cancer center was open, then left and got on the freeway 4 blocks southeast of home, got about even with our house headed north and saw 2 jacknifed rigs and a box truck all stuck on a little rise going up to the next exit. It was snowing hard, and we probably had close to 7" by then. They were sideways enough we couldn't see the 3rd rig past them the same way. About 40 cars had pulled up as close as they could get thinking they were getting through somewhere; I hung back to give myself a run when they did clear, until cars started pulling past me to jam it up even more.

  About 45 minutes later a city snowplow came through and plowed the shoulder and I swung in behind him and idled up the shoulder to the next exit. (About 8 blocks northeast of home.) A car was stuck blocking the left turn lane, so I turned right, went down to the next intersection and then turned back west to head towards home. By then we were getting close to 10" of snow. I knew we'd never get back into the neighborhood with just my tires and the sand in the bed of the truck, so I found a gas station parking lot I could get into and Dottie put the chains on the truck while I sat with the door open and talked to her and made sure no one messed with her. Not much I could do, but figured I could whack them over the head with an oxygen bottle if I had to. I got very cold and wet, and I already had the beginnings of an upper respiratory bug starting (I'd been going to double check the antibiotic I already had a prescription for against the 2nd chemo drug when I went in that day). Dottie couldn't hook up the tensioners on the tire chains, so I got out and did that but ran my first bottle out while I was, and was too cold to realize or hear it clicking, so I crashed my O2 level. Got back in the truck, changed bottles while she put the 2nd chain on, hooked the tensioner up and then we worked our way home around a dozen stuck/stalled/abandoned cars.

   That night I started getting chills and shakes and ran a fever for a couple of hours. I broke it by rotating aspirin and Tylenol every 2 hours. Friday we did go in and get the line cleaned, blood drawn and because of the fever and stuff, the oncologist called me in. He said it was OK to break a fever that way, that I should add ibuprofen to the mix, and agreed that it probably was the respiratory bug and not an infection from the PICC line. He said the antibiotic was OK with the Alimta (the 2nd chemo drug instead of Taxol), and I started it that afternoon. The next night I went through a worse round of chills and fever, and broke it the same way, but stayed on the rotation through Sunday. Dottie had to work that day so she called John and my sister to come stay with me as she didn't dare leave me alone. 

   I kept the rotation up into Monday and then slowly spread the hours apart until Tuesday evening when I quit. Tuesday we got another foot of snow. Dottie had left her Malibu buried after the first storm and drove my truck all week. She finally dug her car out yesterday. Had PICC care again this last Thursday-still a high white count, the other numbers aren't middle range anymore, but aren't to the bottom, either. I started a 2nd round of antibiotic as I was (and am still) coughing up a bit of color, but other than that things are about as normal as they get anymore.

   My oldest son and his wife were both traveling this week, so they drove in from Colorado and dropped their dog off the weekend before the snow rather than kennel him. My son drove back in last Friday night to pick him up, and he and Dottie shoveled the sidewalk along the garage so the water has a place to drain as the melt starts, and they pulled a broken limb off a tree along the fence overhanging our power line into the house. It's supposed to be 58 by the time I have chemo again on Thursday. I can't wait for things to green up a bit outside! Last winter the grass stayed green all winter, then the drought hit this summer and it was scorched so badly it was brown before winter ever began. I'm hoping all the snow means maybe we're going to break the drought this year!

   I feel really guilty about Dottie having to shovel all this by herself. I know I can't, and she says it's OK, but I spent years trying to keep her from doing any of it after her hip and knee were done. She even went next door and shoveled out the grandmother next door's car as her kids couldn't be bothered. 

   I finally started feeling better on Sunday, though I'm still coughing up some phlegm. Yesterday after my son headed home to Colorado I spent the afternoon trying to figure out if I could draw Medicaid to go with the Social Security disability that will start in June (no money 'til July). It appears in some states, yes, but not in Kansas. SSDI says I can have Medicare to go with it in 2 years and they've set my review for 5 years as they don't expect me to be around for it...

  When they cleaned my PICC line last Thursday the nurse didn't get all the adhesive remover cleaned off my skin, then when the Medipore patch didn't want to stick she used a tape that wasn't Micropore and I've been itching ever since. Until yesterday I was just taking benadryl to sleep on, but it was so bad yesterday I started the Prednizone again. If my writing is disjointed or there are typos, please forgive me!

   I finished "Suite Francaise" and read all the notes that Irene Nemirovsky had laying out the chapters she didn't live to finish-the book is fantastic, and would have been even more so had she been around to finish it. Her letters, her husband's and the responses to them are included as well and make very poignant reading. I'll either start on "Gondal's Queen" (Emily Bronte) or one of the two Vita Sackville-West tomes I have on hand. I have 2 more of Nemirovsky's as well, but want to give the first one a bit of time "to stew" before I start another by her.

   I can't help but think of the story of "Shakespeare's sister" (if "the Bard" had a sister who wrote as well and prolifically as he, we would still have never heard of her because she would never have been published or her plays never performed because she was a woman) and wonder if Nemirovsky had been a man if the Germans would have been quite so quick to trundle her off to Auschwitz? 

  May the week each of you!