Monday, December 23, 2013

An early Merry Christmas!

     Billie Holiday swinging in the background...the lights on the tree twinkling...totes of wrapping paper and ribbon gathered to work on getting more of things ready. The majoirity of the shopping was done a week ago, despite me not being able to get "out and about" like I would have before. Bill's dog is curled up at my feet and checking the door everytime he hears a noise to see if Bill, Laura and Liam have come back from her parents. They got here on Thursday and it's been wonderful getting to know Liam as well as seeing his parents again for the first time in a couple of months.

     In a few minutes when I actually settle in to wrap I'll be slipping "White Christmas" into the DVD player. We watched "Holiday Inn" a few days ago-both are favorites of mine, with "Holiday Inn" actually getting an extra half a star for the music for all the other holidays that echoes around in my empty head at the appropriate times.

     My favorite song from "White Christmas" (other than the title track, done in both movies and perhaps more wonderful in the first) is "Count Your Blessings". I've always heard that in my head when I was depressed, or times were rough and it's always managed to change my perspective. This year, it's especially poignant.

     Among those blessings, I count each of you who have found your way here through the years. The ones that still visit now are especially dear right now! Your comments; your kind words; they've meant so much through all of this!

     May your Holidays find each of you near those you love and if you can't be together physically, may you find some other way to be close to each other through this magical season!

    Merry Christmas to each of you and the Happiest of New Years as well!


Sunday, December 08, 2013

Letting sleeping dogs lie...

kind of sums things up around here!

They still haven't scheduled the P.E.T. scan because they're trying to give the chemo some time to max its result. I cancelled the pulmonologist appointment accordingly, though I'm beginning to regret it a bit. I'm on my 3rd round of antibiotic, having changed drugs for this 3rd round and finally between it and Mucinex it seems perhaps, grudglingly, the bug is giving up.

I've been keeping better track of my O2 numbers this past week as well and would almost bet money they've slipped a bit again. I drop just wandering around the house now with the concentrator set on numbers that used to let me walk at a fast pace on the treadmill. If I don't concentrate on my breathing I drop to a point that is scary low-down in the 70's. I'm using a shower chair now because that's the time I drop the worst, even with the concentrator maxed out.

So I'm starting to think in months now, rather than years...

Despite Kansas City falling into the "deep freeze" of late, things are coming together nicely for the holidays! A good thing, as I'm not up to shopping like I used to. The box to Vermont is gone and a lot of the shopping for here is done now; we're still waiting on lists from a few hold-outs to finish things. We haven't gotten our tree yet, but will in the next few days. I'm also hoping to get a new glasses prescription as I haven't had new ones in 6 years and my reading is starting to suffer from that along with some badly placed scratches on my old ones.

What I've been lacking there I've been making up watching TV as I've had to spend a lot of time on the couch this past week due to some swelling in my left lower leg (jokes of tapping it didn't make Dottie laugh at all). A few weeks ago I picked a Roku box (internet television running off my wireless router) and between the free outlets available and the others I've spent a lot of hours watching things from it. Now that the Chiefs game is over and I can take my eyes away to fix some lunch, I'll be moving there in just a bit to either watch Dawn French or Chaplin-I haven't quite made my mind up yet. I've also spent some time watching the NASA channel (free) and actually got to see them discussing the delivery vehicle for one of Bill's projects!

Thank you all for the kind words and encouragement each time you come here. I know it isn't easy when I don't sugarcoat what's going on but life is a bit too short for that anymore!

I hope the holidays find each of you somewhere wonderful with those you want gathered near!

May the world be kind to each of you!


Saturday, November 23, 2013

Mixed weather...mixed life...

60 a few days ago-14 night before last-25 for a high today. Poor Dottie's out shopping and I'm snuggled up at home where it's warm. Some days it pays to be sick!

I had the 12th round of chemo a week ago Friday The nausea hangs on a lot longer and a lot stronger now-there was none until about 4 rounds ago; the drugs took care of it. I got a stronger med after round 10, but the med provider would only authorize 8 pills a month when I was supposed to get 2 a day for a week. I talked to them, then the oncologist did and he got them to authorize 15/round, which is enough to get me through until the 8th day (today) when it finally seems to back off.

I got the PICC line out and will have a port put in for the next round-Kranki was right about that being the best possible choice not only given my allergies, but in that I only have to have it maintained every 6 weeks if I'm not actively getting chemo and it looks like my "maintenance" will be at least that often.

The P.E.T. scan has been moved back to the first week of December, so I won't know any numbers on cancer reduction until then.

Because of the prednizone I was taking for the itch from the bandaging of the PICC line I've put on about 10% weight-wise and it's affected my breathing to the point that I had to back out of trying to go to Colorado to see my newest grandchild. I'm barely getting around the house right now at 500 feet altitude; going for 5700 didn't seem wise. I made it through Sam's Club with Dottie a few nights ago and rested most of the next day. Earlier that day we had to go to one of the larger malls so she could pick out glasses frames and we used the wheelchair I got last month for the first time. I hadn't been in that mall for about 6 years, so she took me around the lower floor before we got her frames; by then I was tired enough that we just came home to take a break before we went to Sam's.

I had some plans of hitting a couple of local art galleries (in the wheelchair) while she was off, but the nausea hanging on until today had me not really feeling like it. Maybe Tueday we'll do one of them. Wednesday she'll spend making pies for Thanksgving, but I really don't mind hanging around the house when she's making a bunch of apple pies!

I'm grateful to each of you who still find your way here to check up on me, and hope that the week is kind to each of you and that Thanksgiving finds you all gathered with those you love most!


Monday, November 11, 2013

A Veteran's Day post...

Something I found last night as I was looking for photos for my grandaughter's Veteran's Day project at school. 40 years ago this year, taken by my Dad as I was on leave between "A" school at Memphis and my "C" school in San Diego.

May the week be kind to each of you!


Wednesday, November 06, 2013

11 months ago...

I wasn't sure I would make it until Christmas. Let alone the rest of a bleak and dreary winter, the tail end of the drought that made things so brown and sad around me, the summer, a trip to Vermont and to the beginning of another holiday season!

But here I am!

And that holiday season kicked off early last evening with the arrival of Liam Fletcher at 8 pounds and 2 ounces. He and his Mama are doing well, and his Papa appears very proud in the text pic we received!

I don't know what else to say about things at the moment, except that it's been a very good year! I know what blessings I'll be thankful for in a few weeks!

Each of you among them!

May the rest of this lovely week be kind to each of you!


Saturday, October 26, 2013

11th round...

of chemo yesterday. The PICC line still doesn't work right, but we figured out there is a kink in it right where it goes in the arm, so cut one stitch and stood it up a bit and at least things worked better. After round 12 they're going to pull it and I'm going in to have a port surgically implanted in my chest. It's less maintenance and the only time there's adhesive on it is when I'm actually being infused, so that would be nice as well!

The last round was pretty rough between skin reactions, stronger than usual nausea and more blurred vision than usual. Perhaps the flu shot I had the week before was messing with me, or the respiratory but I picked up the week after. Finally started feeling human again on Thursday.

My only reading of late was "Inkheart" by Cornelia Funke. I'd loved the movie, and of course the book is better. I bought the three book set at a great discount, and needed a break from all the war related stuff for a bit. Now I've started Erich Maria Remarque's "Flotsam", a lesser-known novel of his written in 1939 and translated in 1941, set in 1937 Europe and revolving around all the poor souls being punted from country to country as their papers were revoked for being Jewish or too outspoken or some other perceived flaw. Very good so far, I got about 5 chapters in yesterday at chemo.

Our newest grandbaby is now due November 5th, he will be our 4th but Bill and Laura's first. Very much looking forward to this! John and Noel plan to renew their wedding vows in February, so there's another date to look forward to-I kind of plant these milestones out there to keep my focus somewhere other than my immediate "goings on".

The battery in my truck is 8 years old now ('07 truck built in late '06 and the '14's are out now) so I'm going to try to slip out to Sears in a minute and bring home a new Die Hard to put in it. It's not being driven much, but the idea of going out to go somewhere and having it not crank doesn't enthuse me. After that I need to put a set of tires on Dottie's Malibu. It has 80,000 on the Goodyear Assurance's I put on it almost 6 years ago; they aren't down to the wear bars, but don't have the wet traction they did when newer and they're predicting a wet winter for us. She credits the aggressive traction tread with saving her at least 3 times in heavy downpours and traffic, so we're going back with exactly the same tires again.

I hope this finds each of you enjoying a lovely fall!

May the world be kind to each of you!


Thursday, October 03, 2013

I've been lost in the pages...

of some great reads these past few weeks. I finished Remarque's "Three Comrades" and lept into Ken Follett's "Fall of Giants"; it covers much of the same time frame as "All Things Quiet on the Western Front", "The Road Back" and "Three Comrades", but written across 5 families and countries. I finished it just after the sequel "Winter of the World" hit paperback and drank those thousand pages as well. Follett sucked me in a few years ago with "Night Over Water", a novel that takes place aboard a Pan Am flying boat, a plane I've always had a love affair with. I only wish one had survived the war. Then I ran across another he'd written, "Hornet Moth" that involved fleeing from the Nazi's in a biplane that shouldn't have stood a chance.

    On the heels of those, I read Jules Verne's "Around the World in 80 Days" because I found a copy my grandson had bought in a book sale a few years ago and figured I'd better read it while it was at the top of the shuffle.

    For a while I'd been reading many comments about "The Book Thief" by Markus Zusak so I've spent the last few days devouring it, finishing it when I got up today. I probably should have known better since I also have been taking Prednizone most of the last couple of weeks to keep me from scratching my arm wrappings off, and today had started the pre-chemo steroids as well. My eyes have been a bit puffy this afternoon, lol.

   Now I'm trying to decide what to start tomorrow! I need to get away from the WWI and 2 for a bit, and have a couple of things I'd like to start, but it may rain tomorrow and don't want to take a chance on getting a few of them wet. So I may just put my Kindle in a freezer bag and take it to chemo tomorrow and read some short stories instead, then start something else on Saturday!

   I got the Kindle because I had thought I'd be in the hospital a lot more than I have been and it would be easier than trying to keep a stack of books around. I haven't read it a lot yet, more because I've been getting to the library while the weather is good, along with picking up a few books of my own through the summer as well. I have more than enough things on it to keep me busy as well! I've been amazed at how many complete volumes of classics can be picked up for a few dollars, or even for free!

    Tomorrow is my next round of chemo, and if I haven't lost count, I have two more after it, then another PET scan to see what's going on inside me. Sometime around Thanksgiving, perhaps I'll know something, which will also mark the anniversary of the beginning of all this. Hopefully I can prove the statistics on the fibrosis wrong and this doesn't mark a halfway or quarter point, but I try not to think about that too much!

    May the weeks be kind to each of you!


Sunday, September 15, 2013

Back home again...

    I slipped off to Vermont last month, not long after my last post. I didn't want to "jinx" myself by talking about it beforehand, as on the health front things were just too "iffy" to be sure I could get there and back OK. Nothing went as planned, but everything worked out despite Murphy and his laws...

   The oxygen company dropped off a portable concentrater for me to use the day before I left. I'd tried to get one a few weekends before to experiment with, but they said they had none extra as it was peak vacation season. They were also supposed to drop off a smaller 5 liter machine for me to take with me, but it got left off their list. Dottie had already decided I was taking my 10 liter one from home, and the compressor for the walk-around bottles I've been using for the last 8 months, and I was lucky enough that the guy who drives the truck came up with another high-pressure bottle for me as well. Between the 4 that I have I can make 12-14 hours right now just on bottles, depending on my activity level.

    We packed and she loaded most of the car the night before; the morning we were leaving she loaded the two machines last, we put the portable in the backseat between them, and plugged it into the cigarette lighter. It alarmed immediately, and I went through the troubleshooting stuff and couldn't make it stop. We did the last errand we had in town as I called them and they asked if I could stop there on my way out of  town. We lost an hour, but they traded me machines and the 2nd one worked OK. On 12 volts it would maintain my numbers as long as I was sitting or driving-if I tried to walk I crashed immediately as it doesn't have the reserve to allow multiple "puffs" in the same breath like the bottles do. So when I was in the car I used the machine; each time we stopped I switched to one of my bottles.

   That night, in the first motel, I tried to shower and did OK in the beginning, but by the time I'd done my legs and feet, my numbers were down in the 70's and I was close to passing out. The directions said you could put a 50 foot hose on it; I only used a 25 and had it turned all the way up running on 110 from the motel. My lungs were aching for 3 days after that...every time my numbers get that low it's bad for a while.

   The 2nd night we made Vermont. We had worried about the 2700 foot passes going in, and I wore my oximeter the whole time, tracking my numbers and stayed at 98% while on the portable. After we cleared the passes, Dottie said she was too tired to drive further, so I took the wheel for the last 3 hours to her sister's.

   Of course, it was right after that she said that she was really hoping she'd get to see a moose this time, as I had 2 trips ago with her brother-in-law Tom. I'm driving, it's 11 at night and starting to get foggier by the minute. Somehow I just knew her moose was going to appear in front of the car, especially when it got to the point of foggy you could only see about 3 car lengths and I was down to minimum highway speed!

   Instead I drove into rain, and the visibility got a bit better. She never did get to see her moose this time (thank goodness)!

    When we got to her sister's, I'd used 2 of my medium bottles, I still had the smallest and largest full. We got things unloaded and started the machines up and then I slept about 10 hours.

   Since none of us were sure if this was my last trip over the mountains or not, instead of spending most of the time visiting family, they decided to take me all the places I'd always wanted to go in 36 years of visits, but hadn't been to, along with a few new ones I'd found that even they didn't know of. We managed new places almost every day of the two weeks, along with a couple of wonderful family barbecues. I managed to hit a few bookstores and bring home some new treats as well, all used but one. One is a 138 year old Library of Congress "extra" that gives the inventory of the library/art gallery Dottie's great-great-uncle gave the town of St. Johnsbury!

    The first Wednesday back I saw my pulmonologist. She said my lung capacity was back up just a smidge (42% up to 45%) and that I'd done well enough that if I promised not to try to "tough it out" and turn around and come back if things didn't work well, I could try to go to Colorado after Bill and Laura's first child is born in November. They are due early in the month and when they were here for Labor Day, Bill figured out that he most likely won't be able to travel at Thanksgiving. I really don't want them on the plains right then anyway, if there's any chance of them getting stuck. I-70 is the only place I've ever seen gates on the freeway ramps that they can padlock to keep you from getting on, and with a newborn that worries me!

   This last Tuesday I went in and had a new PICC line put into my right arm. They pulled the one in my left before the trip as it was 7 months old, which is old for one of those, and had a bit of a kink besides. It was so nice not having to travel with it, to wrap it to shower and to have my skin have a chance to heal!

   The new one is taking some getting used to as besides being in my right arm, it's also more towards the front and so every time the bicep moves it is in the way. Friday I had chemo, and after they cleaned all the dried blood and stuff from the PICC site at least the itch has stopped for the last few days! Between taking prednizone for that and the pre-chemo steroids I was a bit of an emotional wreck!

   After things settle down a bit I'll touch up and post some of the trip photos I came home with. Not as much scenery as I wish I'd shot, but some interesting places we visited.

    I hope life is being kind to each of you!



Monday, August 05, 2013

Things are simmering nicely!

I've kept very busy since my last missive-finally was so exhausted last Thursday (4 days after the next round of chemo) that I had to take a few days to rest up, but now I'm ready to go again. I've spent time in the driveway (brakes and rotors on her Malibu, along with checking ball joints and tie rod ends; then changing the oil in my truck a few days later), I've shopped, and spent a lot of time dealing with phone calls as well. Amazing how much of one's life you can lose to voicemail!

I'm into Remarque's 3rd book dealing with WWI and its aftermath "Three Comrades". A movie I've seen more than a few times and loved, I wanted to read the book before I watch it again and my DVD is waiting, I swear telling me to hurry up! I've read more books in the last 6 months than I have in many years, and the list of those waiting keeps on growing.

When I ordered my sister's birthday stuff from Amazon I added a treat for myself (to get the free shipping, of course) acquiring "The Birth of the Hot", a series of sides Jelly Roll Morton recorded in 1926 and 1927, about 6 months either side of my Dad's birth. The name is appropriate, and the recordings have been cleaned up nicely compared to some of the "acoustic" (pre-electric microphone) things I've listened to through the years (and been grateful for).

I'm slowly ripping all my CD's and putting them on an MP3 player. I did some early this year, before my hospital stint, so I would have them during chemo sessions. I was glad to have them during the hospital stay, and putting the rest on a chip seems to make sense. I know there are purists that decry the sound quality, but the quality of my hearing is probably even worse than any fault they can find with the medium, and there is much to be said for the comfort of "your own" music as opposed to the ideas someone else would have for someone my age.

Last night Dottie came home and I had Beethoven playing on the Crosley. "The Complete Symphonies, Vol,1" conducted by Otto Klemperer leading the Philharmonia Orchestra. I heard a reference to his work, read about him and acquired them and have revisited them several times in the years since. I'll be ripping them in a little while, but wanted to get an update posted here before another day slips away from me!

I'm waiting for Dottie to get out of the shower to try and recreate a restaurant recipe (grilled chicken with peppers and cheese) for dinner. I have another to try for tomorrow, a variation of a Jacques Pepin one, but needed the oven for it and have baked potatoes in there right now.

I hope life is being kind to each of you! Here, I'm just grateful for each day and enjoying each as much as possible!


Thursday, July 11, 2013

Pulmonology visit yesterday...

went well. I had the function test, then saw my doctor and we went through the results. My capacity is down about 12%, but the diffusion (use of the oxygen I get) is unchanged and that means that the fibrosis is unchanged or only slightly worse; the drop in capacity is more due to how many times I've been sick through all this and therefore less active than either of us would have liked. Between getting in some walking and dropping some weight, I should recover most of that 12%. We've scheduled another PFT and appoinment for the first week of September. She's hoping that after the late spring and all the extra "lung bugs" that I stay healthy enough for the next little while to get ahead of things again. Here's hoping!!!

Monday I had my 7th round of chemo; Alimta only this time. So far I seem to be a bit less rough afterwards than usual, though I've slept a lot yesterday and last night. The real story will be told come next Monday when we see if I avoid my usual "week after chemo" round of chills, shakes and fever! That has hit a week to 10 days out each time so far; I'm hoping the lack of carbo-platinum ends it.

The 4th of July turned out wonderfully! Bill and Laura made it in from Colorado; her "baby bump" is showing now and they both seem to be doing well and looking forward to parenthood. John, Noel and the 3 grandkids were all here, along with my sister and brother-in-law along with their two boys and one of their girlfriends. Quite a houseful! It was a much cooler day than a year ago, and between the day and night time fireworks there were about 7 hours worth of fun, plus dinner and dessert.

Bill took me to Lowe's the day before and I bought a good painter's respirator; one that specifically filtered for sulfur dioxide, among other things. Since "black powder" is sulfur, potash and saltpeter I figured that would knock most of the fumes and it worked well! I smelled more powder from everyone's clothes when they came inside at the end of the night than I did the whole time we were outside!

I had planned to put a hose barb on it for my oxygen line, but slipped it on over the cannula and it worked just fine; my numbers stayed up well and I had a great night watching everyone light things. I used to take turns, but had thought those days were over as I don't exactly move like I used to.

My older nephew had other ideas, however! He acquired a few feet of slow burning fuse and laced it to the "finale", so I could go out and light it and have plenty of time to come back to my chair, sit and recover before it went off. In fact, it burned a bit slower than anyone thought it would and it took about 10 minutes before it finally did go off, lol! It was nice to still be a part of things!

Fed-Ex just dropped me off the rotors and front brake pads for Dottie's Malibu; I know what I'll be doing on her next day off! Hers are warped, the originals and I could have them turned, but then they'll tend to overheat which will make them warp again. These are better steel, slotted and drilled so they run cooler, and a very nice set of ceramic pads as well. Between that, rotating her tires, and a set of spark plugs her car should be good for another 100,000.

I hope life is being kind to each of you who still find your way here!


Friday, June 28, 2013


is the reduction in the tumor and 2 of the 3 lymph nodes; the 3rd showed no change. The doctor was delighted and said that this is "proof of concept" and said we'll do 6 more rounds of Alimta, then another PET scan to see where things are at. (That scan will show what is still actively cancerous.)

The report also said the fibrosis is unchanged, which doesn't help explain my increased oxygen consumption, but perhaps the cold I've been fighting this week might. Dottie fought it for 3 weeks before it finally got the better of her and she was dizzy when she tried to get up on Monday. I started coughing stuff up that night. We're both on antibiotics and hoping this clears quickly! Pulmonologist appointment on the 10th, so we'll see how she reads that CT, and what the function test she's ordered for that morning shows.

Got a lovely text photo from my son yesterday-seems my grandson hit the cast iron sewer clean out with the lawnmower, and besides possibly totaling the lawn mower, cut the top off the steel cap and knocked half the threading from the pipe as well. I offered up my SawzAll and some blades so he could cut it off, sleeve it and replace it with plastic; sure glad it wasn't mine! (Added one here several years ago and made sure it was flush with the ground as I could see that coming!)

I hope you all have a lovely weekend and that life is kind to each of you!


Friday, June 21, 2013

I had my morning IV...

radioactive of course, and a CT scan for a chaser. Follow up with the oncologist is Monday...

I hadn't planned to go quite so long between updates, but there were some complications following my 6th round of chemo, most of which have resolved, but whatever the bug was that got ahold of me, my lung capacity is down some; I'll know more after the 10th of next month. Until then I'm doing my best to keep on keepin' on!

Dottie is at the Humane Society now with a kitten that adopted the vacant house next door when it was abandoned. After having it hang around over there and around our driveway a few days, we got a good enough look at it to see it most likely has mange and has been mauled by someone's dog as well. No way we can take it in with Bill's two cats boarding here, or afford the "save" it, so the Humane Society was the only option. On the phone they said they couldn't take it in right now, but if she would bring it in they would look at it...Dottie went out at 2AM this morning to chase away a dog that had cornered it by our house and it was just sitting there meowing, so she's not happy about having to bring it back home and leave it outside.

Tuesday I'm hoping to feel up to visiting the Airline Museum at the old downtown airport-they have a Lockheed Constellation they've restored to TWA colors and flying status. Later this summer they plan to re-create Howard Hughes original coast-to-coast record breaking flight from 1944. It took that record from 14 down to 7 hours!

We're also beginning to plan another Vermont trip as we've been invited to our niece's wedding. I'm compiling lists of bookstores and places I'd like to see, and perhaps, for the first time ever, we'll stop at Niagara Falls after driving past it for 35 years. If I can time it right, "Old Rhinebeck Aerodrome" is a bit south of Albany, New York and if I can get there on a weekend, they fly WWI vintage aircraft or replicas every weekend in the summer, and on a calm day they even break out a 1910 Bleriot monoplane! I actually saw it on TV some years ago when they let Neil Armstrong fly it on a PBS series "First Flights" he had several years ago. (I also watched him bring that Constellation I spoke of into our downtown airport over the I-70 viaduct that lies just off the end of the runway and explain it was the steepest approach he'd ever seen, and was why with the advent of the jet age the airport had to move to its current location at KCI.)

I finished "All Quiet on the Western Front" and wish I'd managed to check out the sequel when I got it, as it's out of print and I'd really like to read it now. Instead I'm reading some Irene Nemirovsky short stories...

May life be kind to each of you!


Friday, May 17, 2013

A visit to the "National World War 1 Museum" at "Liberty Memorial"

I've been trying to re-visit places I wanted to see again when I'm having "good days" and someone to go with me. I hadn't been to the "Liberty Memorial" since early 70's when I talked my Dad into actually going into the two exhibition halls that were there instead of just photographing it from the outside. The docent at the time said they could only display about 10% of the collection they had then because there just wasn't room in the two small halls on either side of the Memorial tower with its eternal flame.

That gas flame used to be visible for much of the city, until it was ordered to be extinguished during the first energy crisis. They have tried several versions of steam and light since; some night I'll have to venture out to see how the newest one does.

By the turn of this century the decking around the Memorial had fallen into disrepair and it was decided that along with the repair, a new museum facility would be built. They excavated the mall and built the new museum under the old Memorial and its exhibition halls. It has since been designated the "National World War 1 Museum". Hopefully some of the photos I shot will roll by in the Flickr feed as you read this-they really don't do it justice, but just hint at all that lies there.

Dottie and I spent 6 hours there on Tuesday; the admission actually covers 2 days and if you took time to read all of the tags and information and explore the interactive exhibits, you could easily spend that long. If she had been off on Wednesday I'd have returned in a heartbeat!

When I go back (and I do plan to) I'll try to photograph more of it. They have replica trenches set up to resemble those of the different armies at different points; as you look inside the occupants speak to you. They have 2 movies, an introduction when you first arrive and a second that explains America's entry during which you are sitting overlooking another set of trenches.

I shed more than a few tears at various points through my afternoon. Though I knew a lot of the history, I learned things I didn't as well. I only took time at one of the interactive displays which was about what was going on in Kansas City during the war.

After we went through the new museum and stopped for something to eat in the cafe (and poor Dottie had to slip out and get me a fresh oxygen bottle while I got to sit and take a break) we used the elevator to go up to the old Memorial level and visit the original Exhibition and Memorial halls; these now display rotating exhibits. Currently one has a collection called "The Road to War". The other has items that had belonged to various Kansas City soldiers, nurses and entertainers; some who made it home, and some who didn't. Very poignant!

As they closed we went back out on the deck and I shot some photographs looking north of the downtown skyline. If you see it, the large building in the foreground is Union Station, now a destination in it's own right with many museums inside and Science City, as well as traveling exhibitions as well.

With the centennial of "The War to End All Wars" coming next year, I had thought it good to go now, ahead of what I think may be some crowds. Now I'm not sure I'll be able to stay away!

May the week be kind to each of you!


Sunday, May 12, 2013

Magic bullets...

I had my visit with the specialist from the Interstitial Lung Disease Network a week ago Friday. It took me a bit to process all we talked about; a bit longer to convince myself the glass was "half full" instead of the other way around, and then I had my 5th round of chemo on Thursday. Dottie was off Thursday for that and Friday because she worked last weekend to cover someone else, so we managed to get to the nursing home to see my Mom and take her her Mother's Day and lunch as Dottie is working this weekend.

The specialist wanted his own set of Pulmonary Function tests, so I was in early in the booth for those. The results pretty much matched the first set I had done in January-I'm at 54% lung function. The rest of the numbers I don't truly understand, though I'll get a good explanation in a couple of weeks when I see my regular pulmonary medicine doctor.

The drug Pirfenidone, legal in 32 other countries but not here, is the magic bullet I was hoping for when I went for this visit. It turns out even if I didn't have the cancer making me ineligible for any trials of any sort, my lung function is also lower than the baseline they would accept into a program. The drug is legal in Canada, but the specialist said everyone he's known to try and obtain it has had a phone call or visit from the F.B.I., and to obtain it legally there I'd need to be a citizen.

It is in it's 3rd trial here, ordered by the F.D.A. and he said that will close in January, they will gather their results and present them and perhaps by sometime in the fall of 2014 there will be a vote on whether to approve the drug in the U.S. or not.

The normal rate of decline due to IPF is about 7% a year; Pirfenidone in most cases negates that exact amount. The decline rate however, in practice is not a steady glidepath through the years, but a stairstep one where it drops then catches up with the curve. Still, any cessation would be a boost!

There was also a supplement that works for some people he wanted me to start called N-Acetyl-L-Cysteine. It was originally made for those who had liver damage from acetaminophen, but has been found to knock 3-4% a year off the decline from pulmonary fibrosis as well. I've been on it a week now, and it seems to thin the mucus I cough up a lot, making it less paste like and much easier to get rid of. It does have a noxious, sulfurous  after-effect, but so far I've managed to keep that mostly to myself...

The other change suggested was a blood pressure medicine that has also shown a 3-4% reduction in symptoms for those it works for, so yesterday after having checked with the oncologist and heart doctors, I switched my Cardura for Losartan. I went on the minimum dose of Cardura after my heart attack two months ago because they started me on Sotalol to control the arrhythmia, so I've traded to the minimum of Losartan and am monitoring my BP every few hours-so far so good.

I wasn't smart enough to ask about the minimum lung function for survival while I was there, I was so caught up in all the information I was getting, but came home and looked it up and it seems that 20% is about as low as you can go before they put you in the hospital to await a transplant. I've been told I can't do that because of the cancer, though the specialist said if I can go 5 years cancer-free there might be a chance.

He also said that he firmly believes that my fibrosis may be work-related to all the solvents and chemicals I was exposed to through the years, and therefore I may not progress as "typically" as a normal patient; that if I stay away from chemical fumes and don't do other things to aggravate my lungs, I may have a better chance at a longer survival rate.

We did discuss "end of life" things, because I've been terrified for years now of ending up on a ventilator like my Dad did 30 years ago and not being able to get off it. He said with my lungs like they are, there is a very good chance that would happen, and even be worsened because a vent tends to inflate the lungs, and positive pressure would cause even more damage and lessen my chances of getting off it. He said if it came down to trying to get through a pneumonia or something, that if I was on one at 2 weeks someone would need to extubate me and I probably wouldn't survive it. We also discussed my CPAP I already sleep with, and BIPAP as other options.

When we talked about my fight against the cancer, he said if it comes down to it and the chemo isn't finishing the job, to go ahead and do targeted radiation, though there will be some collateral damage; he said the cancer needs to be beaten to give me a chance to fight the fibrosis.

So that's where all that's at for now...

The rest of life seems to be going a bit better! Stronger this week, though sleeping a lot still. I'm down to the last of my stack of library books; still as enamored of Irene Nemirovsky or even more so than I was in the beginning. When I return these I'm going to start on things that have gathered around me here for the last few months. I've felt too guilty about not reading the library books to pick up some here that I really want to read; hopefully I'll finish those between now and when we return from vacation in a few months and then take my next stack of notes to the library (I've got about 14 things on a list right now, though most are shorter poetry books, some new and some to re-read, like some early Anna Akhmatova and Marina Tsvetaeva. I have one of Harold Nicholson's on the list, and more of Nemirovsky as well).

Dottie will be home in a bit and I'll have Mother's Day dinner ready for her when she gets out of the shower, along with her present from me. It's a book I had picked out to get her for Christmas until she decided she wanted us to get a joint present (a stereo that can transcribe my old albums to disc, among other things). A history of St. Johnsbury, Vermont, the book is supposed to have a chapter on "meet the Fairbanks family", her maternal family, with images from the houses we've never seen. I'm hoping she has a lovely evening looking through them!

I have Bill and Laura's dog Obie here with me now as well, as they are buying a house. The one they are living in is being shown and they didn't want to crate or kennel him for the next few weeks. He is very well-trained and a joy to have around, though he doesn't much like some of the commotion of the kids playing in the street or the shadows of my old tulip-tree playing across the front windows of the house! He does seem to feel sorry for me though, as I wander through the house and he watches my oxygen line snag under a door or on the corner of the stove and jerk my head sideways. He cocks his head and looks like he wants to tell me "he knows exactly how that feels"!

Now that I have a bit more computer under my fingers I'm going to try and start updating that old Flickr feed to the right, so if any of you have interest, there may be a few smiles or head-scratchers showing up there soon!

May the week be kind to each of you!


Tuesday, April 30, 2013

Good days, bad days...

10 days out from the 4th round of chemo now. The post title says it all...sometimes it changes by the hour.  I'm not going to elaborate; I'd rather try not to think about it when I don't have to!

Bill and Laura drove in from Colorado last weekend for the family birthday party for his brother and him-it's gotten so hard to get everyone together that my nephew's birthday has been mixed in as well. It was fun to  watch everyone playing baseball, though I miss being able to take a turn at bat or in the outfield. Maybe next year...

While they were here they told the rest of the family that they're expecting their first child-that definitely put everyone in a happy place, and combined with the first really nice day of spring (78F. and sunny with a light wind) it was just a wonderful day. Dottie grilled chicken (I'm a bit wary of getting too close to an open flame when I'm on bottled oxygen) and the day before she had made two apple pies (Bill's choice for his birthday "cake") and a toll pan cookie (John's choice for his). My sister brought a crock pot full of "cheesy potatoes" and ice cream, and everyone had a great time.

I didn't do much, but I'm at the "low ebb" from my last round of chemo and just being out in the fresh air for 7 or 8 hours was enough to have me exhausted by the time we came home. There are times that "tired" just doesn't cover it...these past few days have been one of them!

May the week be kind to each of you!


Wednesday, April 10, 2013

Things are finally turning green outside!

   Our April showers have been "choking frogs" off and on this last week, and the grass has gone from dormant from last year's drought to needing mowed in the span of 10 days. I'm not bothering with seeding in the bare places where it didn't survive the drought, partly because I'm not entirely convinced it's over and partly because Dottie told me that I can't mow, and if I can't mow I can't make more work for her.

   When I was in the hospital they had to do a CT scan of my lungs while I was in the ER. I had been scheduled for one the end of that same week to see if the chemo was reducing my cancer at all. Though it was a few days early, it was close enough. While I was in the hospital they told me it was smaller-after I got out I got numbers; the tumor in my left lung is down 22%; the largest of the lymph nodes is down 13% and it hasn't spread to any others! My IPF is also showing no increase since the original round of tests, most likely because I'm on oxygen 24/7. That was after 2 rounds of chemo; I've had a 3rd since and my 4th is a week from tomorrow.

  After almost 2 weeks of feeling totally "blah" after I got out of the hospital, giving my bodythe recommended time to "get used" to the Sotalol they put me on, I started keeping track of my blood pressure numbers and for 3 days it ran between 100/60 and no higher than 123/65. Not really "low" but low to where I usually am, and the last time I ran that low my regular doctor had me start splitting my BP med in half. I called the cardiologist and was told I could do that, or I could cut the dose of Sotalol in half. Not wanting to go through the arrhythmia again, I opted for the former!

  It took a few days, but I started feeling a bit better. I had also finished the antibiotic I was sent home with, was still hacking up "color" and went in to have a sputum sample taken and another chest x-ray. I got a different antibiotic and seem to have cleared up whatever was left in my lungs. The weekend went pretty well, with my grand daughter spending it with us, playing video games with her and watching some movies . I had the Barrett-Jackson auto auction on and she was interested in it, and when she decided a Trans-Am that was up for auction was "cool" I decided it was time to introduce her to "Smokey and the Bandit" and its sequel. Then I pulled out a gem that I had recorded ages ago, but only caught up with when I came home from the hospital; the original "Pennies from Heaven" with Bing Crosby and Louis Armstrong from 1936. Dottie had never seen it either, and they both liked it as much as I did. (Not always the case!)

   We took her home on Sunday evening and ended up having dinner at my son's, and got home late after driving through the first of those downpours I mentioned above. (It was the first time I'd driven her car in anything that heavy since I put the Goodyear Assurance rain tires on it 2 years ago; they are worth every penny!) Dottie put in one last load of laundry and about 20 minutes later it sounded like the washer was off balance. She went to check and told me it was making a clanging noise and the drum was slipping. She started and stopped it a few times, it finally engaged and I started digging on line for troubleshooting.

   Monday I went down and took it apart. I started with the recommended tools, but hers was a bit different and there were 5 trips back up the steps to go get other ones. Steps are the hardest thing for my with my lungs like they are-take several deep breaths then finally do 2 or 3 as I exhale, then catch my breath and repeat. My oxygen is still low when I get to the top, then there are 3 more into the house as I had to clean the grease off my hands to get the keys and open the door to go out to the garage.

   What would have taken an hour or so when I was healthy took almost 5...

   Went yesterday and got the part, along with a special tool to re-install one nut (a proprietary spanner wrench-I took it apart with a punch and ball peen, but was afraid of not getting it tight as I put it back). $38 I was headed home. That was the 2nd time I'd driven since I went to the hospital.

   I stopped and bought some spices on my way home for a recipe I'd found (someone reverse engineered "The Colonel's" eleven herbs and spices; it's pretty close), then started reassembling things. Dottie got home before I was done and helped me finish, then we put it in a short cycle to rinse out anything loose in the pump, and waited for it to spin.

   It spun just fine...but I could also hear gears not quite meshing in the transmission as well. We put it into the slow-spin setting and it didn't grind anymore, but there is a bearing or "dry gearbox" noise that means it's not long for this world!

   I was pretty despondent. She showered, I fixed dinner and we ate, then I showered while she sat downstairs with it while her uniforms for work ran through it. I was almost to the point of wishing I hadn't woken her up the other week (which I thought about at that time for a few seconds before I decided it wasn't time to give up yet).

   But somehow we'll get this figured out-if it will limp along 'til the 1st then we'll rearrange things and replace it. I was up late enough to watch an episode of "Burns and Allen" and George always manages to make me smile, so I went to bed in a better frame of mind and slept well for the first time in 3 or 4 days (I was waking up in the middle of the night for several hours for no reason). Today, the world is much brighter than it was around dinner time last night!

   Forgive me the length of this! I just hadn't really felt like writing until the last few days...I'm hoping this upswing stays with me for a while!

   May the week be kind to each of you!


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!


Wednesday, February 13, 2013

As things go spinning by...

it seems like watching a whirlwind!

   The oncology appointment got moved up by 10 days as my pulomonologist pulled some strings. I met him, his staff, then his partner the radiologist. Very impressed with all of them, and have had no questions unanswered and they even made a point of printing pics from some of the scans to show me the aliens growing inside me.

   I had a P.I.C.C. line implanted a week ago Monday; a week ago today they cleaned it up and flushed it. I had some kind of skin reaction to either the stuff they cleaned it with or the knit sleeve they gave me to put over it; the resulting rash has had me living on Benadryl for most of this last week. 2 of those is kind of like flipping the lights off for me, but still better than scratching myself bloody raw!

   Tomorrow (yes, on Valentine's Day) I go in for my first chemo treatment. This after having a test done on Dottie's birthday, another on our anniversary, finding out about the cancer just in time for my birthday and one of the recent doctor's visits on my daughter-in-law's birthday. I'd like to get off of that cycle, but don't really want to delay this!

   Their original treatment plan was chemo every Wednesday for 6 weeks with radiation every weekday. As they did their homework and with some input from my pulmonologist, along with people from the Mayo, they figured out the radiation would destroy too much of what lung I have left from the idiopathic pulmonary fibrosis. They opted instead to change one of the chemo drugs and give me higher doses of two treatments, 21 days apart, then do another P.E.T. scan to see how much reduction there has been in the tumors and the 3 lymph nodes (yes, a better reading of the scans showed a 3rd involved, they are on the bronchial tube leading into my center chest, but above the heart, so there is less worry there than there was).

  They expect a 50% reduction, and if the scan shows there is then they will begin 5 day-a-week radiation for 6 weeks, perhaps with a pause or two depending on how my skin reacts to it.

   I managed to slip up to the KU library the other week and renew my library card for the first time in a couple of years. Checked out some things that had been on my Amazon list that I really didn't intend to buy, but it's a convenient place to keep track of them. Two books by Irene Nemirovsky; a compilation of Emily Bronte's juvenalia poems about Gondal; Vita Sackville-West's letters to Virginia Woolf and book of essays she wrote "Country Notes in Wartime". I've already finished it and gained some new perspectives on British life in 1939 and 1940 I probably could not have gotten elsewhere. Among all her observations, the most poignant described being unable to sleep and going out for a wander around the grounds of her estate, ending up at a small lake. A moonlit night, the water is black and there is no reflection, but the iris are glowing and she rows out to cut some for the morning table.

   As she does, she hears something overhead and looks up to see German bombers headed to London or somewhere, being intercepted by the R.A.F., their cockpits aglow in the night. So surreal!

   Off now to load some Scott Hamilton onto my mp3 player for's already got a lot of Jay McShann, along with Goodman and Harry James and of course, Gerry Mulligan.

   I'll try to update again early next week, depending on how I feel. Dottie is taking the day of tomorrow to go with me and my younger son (probably should call him something else as he turns 34 shortly) is driving in from Lawrence as well. The older boy and his wife (she who lost her birthday to my appts. last month) are driving in from Colorado for the weekend as Dottie is working.

   May the world be kind to each of you!


Wednesday, January 23, 2013

The road from here...

seems to be getting a little steeper!

I had the P.E.T. scan done last week and got the results Monday. The mass (they're using that word now) in my left lung is 3cm instead of the 2.5 they originally thought. I asked if that meant it had grown that much in that short a time as was told no, it's probably just a better image.

The rub is that they also found 2 lymph glands in my chest involved; one in almost the center and one just left of center. That makes it "Stage 3" . That also takes a lung transplant to fix the IPF off the table. Now, besides the radiation for the mass I'll have to have chemo for the lymph glands because they can't radiate them because it will damage my heart.

Friday I go in for a CT guided needle biopsy so they can pull some samples from the growth in my lung and figure out what type of cancer it is. The doctor scheduled an appointment to give me results on Monday, but the radiology people said she won't have them until Tuesday; when I told them she already said I'd have them Monday they said "maybe she has some magical strings she can pull". 

They said that with the IPF there is a chance that they will collapse my lung trying to do this on Friday and that if it does, when I come to after the anisthetic I'll have to stay overnight, but they still didn't think it was that big a deal.

I have my first oncologist appt. set for Feb. 7th.

National Jewish Hospital in Denver finally called and I have my one hour phone interview on Monday before my results appointment with my pulmonolgist. I don't know if they'll schedule a visit then or not; hopefully the weather cooperates with whatever they decide to schedule. The oxygen company will loan me a portable to get there with and if I have to stay a few days, set me up a regular unit as well for while I'm there as they don't really want you hauling bottles around cross country and I couldn't fill them when I got there anyway.

I've been spending some time escaping lately, when I can. So far today I've only managed a half hour anime episode and listening to a bit of music. But I've been trying to listen to music every day (my era, thank you!) and read some; I've gotten some movies watched and trying to get to one of those a day as well, though the days are busier than you'd think between phone calls, e-mails, therapy appointments and doctor's visits.

Dottie bought me two belated Christmas presents, a Kindle and a Crosley stereo that will spin '78's (yes, I have many), 33's, 45's or cassettes and transcribe them to disc, besides playing CD's. I've dug out the albums I recorded in my school stage bands to transcribe, along with some 33's I can't find CD's of and a box of 80 or so cassettes that were my Dad's of big band radio airchecks he had recorded while he worked in his darkroom. 

The Kindle I've managed to happily load with all of the Bronte sisters novels and poetry, even finding the juvenalia I'd never managed to acquire; the complete works of Mark Twain, Jules Verne, H.G. Welles and some others like Wilfred Owen that I'd always intended to read and never gotten to. Twain is especially a comfort as I can pick up an editorial he wrote, or some of his correspondence and never fail to smile within seconds. My sister bought me a book of Groucho's letters that I think will be the same way!

I'm also trying to get Dad's negatives and mine scanned and onto a hard drive to digitize them into something more compatible with modern technology, as when I'm gone I don't figure anyone will be wanting to look through them. I had bought a nice flatbed scanner to do that with and just hadn't had time; now I have to get it done.

When it gets warmer out I need to drag an oxygen bottle to the garage and start tagging tools as to which were Dad's, a few that were his Dad's, and what some of mine are as I don't know if anyone will realize what they are or what they're for. I also have his flathead Ford manual, his 1955 Motors manual and the one he bought his Dad to cover the '59 Ford wagon I remember Grandpa driving when I was little. 

We're trying to plan a few 3 day weekend trips as well when we get a chance if I'm up to it. Dad took us to the Will Rogers Memorial in Claremore, OK when I was 6; I've been planning to go back ever since and after 51 years it seems like it might be time! 

There are some other short hops like that I'd like to make, but we'll have to see how that first one goes. 

Going to go walk on the treadmill for a while...

May the life be kind to each of you!


Sunday, January 06, 2013

Here we go again...

   Happy New Year to each of you...I kind of stayed quiet for the last bit hoping each of you was getting a wonderful start to your New Year. I didn't want to bring my cloud of gloom to anyone's party...

   I saw my pulmonogist again on Dec. 27th and the high-res CT scan confirmed her diagnosis of idiopathic pulmonary fibrosis. Steroids won't help; long-acting inhalers won't either. There are some orphan drugs and experimentals that may slow the progression a bit but I have to get in for the 2nd opinion she's trying to schedule me for in Denver to see if they have anything that will work in my circumstances.

   In my last post, those numbers I referred to are that 60% of those diagnosed die within 2 years; 80% within 4. I asked her for confirmation of those numbers and she nodded her head "yes" and said this is a very vicious disease and that was why she was trying to so hard to schedule all these things as quickly as possible.

   Another curve ball found me in that she also told me that in the high-res scan they found a "spot" on the outer wall of my left lung. I go in next week to have a P.E.T. scan to see if anything shows up in my lymph nodes; if not then I'll have a needle biopsy to determine what it is. She said if it's cancer, the only option for me is radiation, as cutting into my lung will only make more scar tissue and I'm already at less than 50% pulmonary function.

   She also wanted me to see a cardiologist for a further exploration of the heart testing I had in November, to make sure it was up to all the things that are coming up. I saw him this last week and he said that it is and that the place they were worried about is actually a place that is very hard to get a good picture of when you weigh as much as I do (again).

   My weight has compounded as my activity levels have dropped and I'm as heavy now as I was 2 years ago when I hired into the warehouse I worked in. The 50 pounds I'd dropped has returned in 6 months, which plays into the other treatment option I may have to look at "down the road". She said if I dropped about 70 pounds I could be eligible for a lung transplant, if a donor could be found. That led me to ask her if I chould cancel the "organ donor" on my driver's license as I'd just read about a girl in the UK who died after having the lungs of a 5 pack-a-day smoker transplanted into her. She said no, that things are screened so closely that would never happen here and if I want to donate my organs that someone would make good use of the other ones.

   An oxygen therapist came to see me on Friday, the same guy that brought out my CPAP machine. I've gotten more good information from him than I have anyone else connected with their company and Dottie and I spent some time discussing ways I can get back to my little gym downstairs (the machine I have right now doesn't produce enough for me to really walk; he said that if I take my "E" bottle down there I can't put a longer hose on it and to get the flow rate I need would be problematic. Then he made a note on his paper and said that he would have them trade out my 5 liter-per-minute machine for one that flows 10 lpm; if I asked them to send him out when they call to schedule, he will measure the distance I need to get from where it sits to the treadmill (50' hose plus 7' canula leaves me about 8 feet short) and get a hose made up that will work and measure the resultant pressure drop (why they don't like to do that) so I can set the machine accordingly. He also explained the mechanics of getting a portable to take on the road that will run from a cigarette lighter or 110 in a hotel room so I can sleep using it, along with a battery that will power it for a couple of hours if I need it to.

   This coming week I start pulmonary therapy on Tuesday so they can try to show me ways to make better use of the oxygen I do get. When I pay attention to my breathing I do OK, but when I'm thinking of other things then it gets away from me sometimes.

   So that's the news from Lake Woebegone...

   May life be kind to each of you!