Saturday, May 8, 2010

A New Beginning

Gentle Readers,
At 3 pm on Saturday, May 8, 2010, the Maestro embarked on his newest adventure of the spirit. Your words of support and encouragement during the Maestro's New Adventure were greatly appreciated by the Maestro and his family.


Richard W. Stroede
September 25, 1939 - May 8, 2010

A memorial service will be held at a later date. In lieu of flowers, contributions may be made to:


The Defiance College
The Richard W. Stroede Scholarship Fund
701 North Clinton
Defiance, Ohio 43512


Farewell, Maestro. Bravo.


Son of Maestro
Daughter of Maestro
Wife of Maestro

Thursday, April 29, 2010

Hospice is a Blessing Too!

I know many of you were surprised, shocked, upset, and perhaps sad--that I have moved on to Hospice.I am sure you are aware of them even if you have been fortunate enough not to have had their services for a loved one so far. Everyone of these workers/volunteers is a saint. To be able to deal with impending death day after day is certainly a God given talent.

But from a purely service perspective, this is about the best deal going for someone in my position. It had been increasingly difficult for me to get the service I needed from DRMC--as the complications began to rise--since Dr. Muler was around only on Fridays, and the Oncology unit was open 7:30 a.m. to 4 p.m. Monday through Friday. That forced me into the ER several times with issues that really didn't warrant that slow and expensive option.

Now I have an assigned nurse--Jennifer--who will lead me through the maize. She is in direct consultation with Dr. Gaspar, who for a while, is the physician on call. Jennifer will visit me a couple times a week at first, then as needed. If we need a social worker, they are at hand. All my meds have been changed to their control and practically all are paid for by Medicare (even over the counter). They use Okuley' exclusively, so everything is delivered to our door--free. If I have a question or crisis any hour of the day, including weekends, they are a call away. How great is that? One stop shopping.

What they do not provided is daily care--Emily is the designated "primary care person." She has all the assistance she needs available, but Hospice is not the care giver. Already, I have diuretics to try to reduce the enormous swelling in my belly--it has me mostly immobile at the time--and Dr. Muler just smiled when I suggested their use. The drugs came within a few hours of signing all the paper work.

So fret not, Gentle Readers, this is for the good and will be a tremendous help for us in the coming weeks.

Tuesday, April 27, 2010

Come, Gentle Readers, walk with me a bit further

Many of you who have lived in this cruel world for long knew the ultimate destination of this Adventure when it started. Pancreatic cancer is an unforgiving disease.



My CT scan last week revealed what was suspected when I began to have more symptoms during Chemo. The drugs have run their course, they are no longer effective. The scan shows new lesions, some growth in old ones, and in some cases, some shrinkage. The drugs' usual life is six months--I got five. So Dr. Muler has stopped both Gemzar and Zeloda. They are things of my past.



So the options are not great: it is hopeless to continue the original treatment---it is not working and it costs about $30K a month to the Medicare fund! There are a couple other drugs, administered with a pump worn two days in a row. Reportedly the side effects are horrendous and the benefit may be a month more of life. There are the clinical trials--Muler has nothing good to say about them. Says they are mainly for the Researchers, an attempt to see how much of an experimental potion a living person can stand, and with absolutely 99.99% failures rates, true shots in the dark.



The final option is where I am going: no more infusions or Silver Bullets-- I will continue to use blood thinner and monitor my glucose. I have a mild form of Oxycodone for pain. More is promised if I need it. Today, a representative from Hospice comes to explain their services. It will be easier to get emergency services and advice from them than from folks at DRMC.



I want to feel as good as possible for the time I have left. There are many things still to do with the move. Commencement (where there will be a special announcement concerning me), and our golden wedding are dates I want to enjoy. I should continue to be mobile. My main problem is that I am so weak and my abdomen is greatly distended. I am told that it is because the cancer slows down all the major organs. The Meds allow me to get by with that discomfort.



No one knows how much time--do any of us? What ever it is, I will live it day by day, just as I have to now--to the end of the adventure.



Don't grieve for me--instead keep the prayers coming for some good days ahead.

Friday, April 23, 2010

Taking Stock - Family II


So Bertha and August were married in Milwaukee, in 1885. That year their first daughter was born—Theckla. We always called her Tickla. We remember her as the funny one, repeating things, forgetting where she was going. It was called “hardening of the arteries” then. It was surely Alsheimer’s. Two years later, Arthur was born. Two more years, Edwin. Caroline and Martin both transpired in 1890/1891. It appears that Martin and August were both working in the shipping business, as freight haulers in Milwaukee. In 1893, Selma was born to August and Bertha. In 1895, there was either a still born or day-of-birth death, August F.C., according to church records. No one in our family ever mentioned this.

During this time, someone made the decision to get out of Milwaukee (some branches of the Stroede’s were completely wiped out by disease--that would be a great stimulus). The family moved to Dell Prairie Township, Adams County, to a 120 acre farm. Flat, sandy, and not very good farm country. For the next 65 years, my family would pick out a living on these acres.

In 1897, John P. R. Stroede was born, our father. He was born in the same house, same room, same bed, as I and all my siblings. He was called “Johnny Boy,” and was clearly somewhat of a favorite. The last child, Alma Amelia Augusta, was born in 1899. She was virtually the same age as our Mother, and they were hard fast friends—more like sisters—until the day Mother died.

As I said above, Bertha died shortly after the 50th anniversary, but August lived on to 1943, becoming naturalized late in his life. Though I was four at the time, I have absolutely no recollection of the man.

All the family, with the exception of Alma who moved back to Milwaukee with August and Bertha about a year after my parents were married, found spouses in the Adams County area.

Theckla married a Wreszinski—several families lived at adjoining farms—they soon moved back to Milwaukee and had Ruth and Marie. Marie was the millionairess (married into it) and died only recently in her 90s. This marriage resulted in Uncle August (to the girls ) becoming my step-father much later, when our Mother remarried late in life.

Arthur lived a very short life, marrying in the Dells. One of his sons was briefly a gym teacher and coach in the Dells when Emily and I were in high school and later became an administrator at the Baraboo UW branch. Though that cousin is gone now, another, Roger lives in Arizona. I never knew Arthur.

Edwin was in WWI, apparently as a glider pilot, was “shell-shocked” and spent the rest of his life in a military hospital. I only saw him a couple of times. His wife, Aunt Laura, became Emily’s step-mother not long after Edwin and Laura divorced—well, look, folks, it is a small town. Ed'sdescendents all live in the Dells and many were house painters.

Selma married Roland LeMar and lived in the Dells/Baraboo area her whole life. One of her children still lives there and is very interested in this genealogy. I remember visiting the LeMar's, usually when Alma came to visit my folks.

Alma moved back to Milwaukee with her parents, ultimately taking care of them in their declining years—and lovingly tending their graves at Valhalla Cemetery on the far northwest side of the city. She married Richard Hirth, who died of a heart attack way too early. They were my God Parents, Dick was my name sake. I—and everyone else in the family—adored Aunt Alma. I remember waiting at the road, down our very long lane, for hours, to see her Ford coupe arrive. Nothing I remember was more anxiously awaited than her visits. And she and our Mother had great times together as well. She was gracious, classy, fun-loving, and made a great Beefeaters martini. Old fashioned were the alternate beverage. I can remember every detail of her apartment at 2525 W. Capitol Drive—where I went a few times, with Dad, Mother, and once alone. Late in life, she was about the only one in the family who followed my career and understood what I did. She gave me her set of crystal goblets/wines and for many years we have used them for our family gatherings and toasted, “Here’s to Aunt Alma.” I miss her more than anyone.

Oh, yeh, the picture. Genealogy is so darned paternalistic. Here is the other side. This is my favorite picture gleaned from the sorting of a large collection passed on from sister Bette. Five generations of mothers—a long line of “blue-bellied Yankees,” as Mother always said. My nephew, David (now deceased) did extensive work on this line and easily tracked them to the 1700s. That is the advantage of English parenthood. German is tough because of the loss of church and civil records through the world wars and shifting borders.

Our Mother is on the upper right—son Andrew observed, “your Mother was hot!” The blush of youth—she was only about 17 or 18 in this picture. Grandmother Schultz is on the upper left. Her maiden name was Newell and her mother is holding infant Helen, my sister who died when I was an infant myself. The old woman, my great-great grandmother, was around 100 years of age . Grandmother Schultz, of whom I have pleasant memories of her sugar cookies and ever present apron, was also Mary but known to all as May.

Monday, April 19, 2010

Quick and late update

Because I was exhausted all last week, and feeling really punk, I went in to see Dr. Muler on Friday. He has pulled me off the week three infusion/oral for now. Today I had the CT scan that was originally scheduled for next week. I will see the Doc again this Friday to look at the results and reevaluate my treatment schedule. If you know the routine with this type of treatment, it is common for Chemo to become less effective over time--it has been five months for me. Will let you know the results as they are available.

We hope to see the Kahle modelers this week. The painting and all the other little changes are complete now. Only the bathrooms and carpet remain. We have scheduled the big "Guy Tool Sale" for May 1. We would hope to move into the Condo early in May so that we can finish disposing of the "stuff" in 742 well in advance of the June 1 possession date.

Thursday, April 15, 2010

Taking Stock - Family I

Guess no one every doubted that I came from old German stock. Enough folks have struggled with my name to prove that at least. Here is a pic of some very grim looking grandparents. Grandpa and Grandma Stroede—August and Bertha. I never knew them. The photo is their Golden Wedding portrait—and I was not born yet. As a matter of fact, my brother Ernest (four years older) was eminent and our mother couldn’t make it to the celebration held in Milwaukee. Reportedly, August called Ern “the nuisance” for a while for messing up the party. Probably Mother didn’t really feel badly about missing because she didn’t really like the folks anyway. Seems that for the year or so that the old folks and my parents lived together in the Adams County house, a lot of the conversation was in German—of which my Mother understood not a word.

My forebears came from Pomerania, that flat country—farm land—at the north of Germany that slipped from Germany to Russia and to Poland (which it is currently a part of). The church district was Kris Cammin and the Cathedral still stands though now it is Catholic and any old vestiges of Evangelical Lutheran have been wiped clean. There are public records of a Jacob Strode as a tax paying land owner in Trisbow as early as 1717. A few miles away, in Schwenz, both Martin Ferdinand Stroede and Caroline Gertrude Steffen were born. They became my great grandparents. In 1882, they arrived in the port of Philadelphia, traveling with their son August, a teenager. They quickly found their way to Milwaukee, where there was a huge population of folks from Pomerania. There are records of other Stroede’s there as early as 1841. At the same time, there was a struggling early Evangelical Lutheran movement that resulted in at least three congregations in the north side of Milwaukee (this was the large German part of the town, today it is completely African-American.) The churches have merged over the years and are now Missouri Synod.

As Andy and I worked on this genealogy, we were not even aware of the Great Grandparents. No one in my family ever mentioned them. They were elderly when they emigrated and lived short lives, but they are there, buried in Union Cemetery which all the Ev. Lutheran churches shared. Their graves are lost as they are in the earliest section of the cemetery where no stones exist—apparently most were surface and have been covered by sod. There are many more Stroede’s in the large cemetery, most we can not identify as relatives—yet.

For a couple of years before finding church records from Milwaukee, Andy and I struggled to discover where August was born. He was naturalized near the end of his life and listed his place of birth as Halnor, Russia. No one ever heard of the place. Turns out it is Hellenurme, Estonia. So maybe I am not German. Seems that there was a lot of Germans from the low area who moved north and that they became the middle class merchants of the area. Need to make a trip there—don’t think I will make it. We also discovered that August had two sisters and two brothers—but no names were identified. We are aware of many possible folks who actually lived with or near August in Milwaukee in those early years. Unsolved, but I would guess there are a lot of cousins in Wisconsin of which we are not aware.

One other mystery was solved in our work. The family legend had it that August and Bertha met on the ship emigrating and fell in love. Actually, Bertha Woldt was born in Tribsow (this is where the church was—and is—located that the Stroede’s would have attended) and did not emigrate until a couple of years later. They clearly were acquainted, because they married almost immediately (1885) and started producing offspring.

What did I get from all this heritage? Look at the picture again. I am always accused of slow to smile. Have that square-set jaw as well. I seem to have been born 30, never really had a wild and crazy time—no wild oats. Father at 22, college teacher at 24. Saw my duty, stuck to it, life is serious business you know.

EXCLUSIVE X 4

So more good news, we went out to Kitchen Center to visit Dick Kahle--to beg, plead, threaten, whatever. I said, "how's it going on our project?" He said, "we start Tuesday." Awesome.

I have an appointment tomorrow with my Oncologist. I am starting to have some pain, need to have it checked out.

Tuesday, April 13, 2010

EXCLUSIVE EXCLUSIVE EXCLUSIVE

More good news. We waited, rather impatiently, for 2 and 1/2 hours for the buyers to complete an inspection--they choose to use a contractor family friend--top to bottom. After a white knuckle night, we heard today that they have signed off with no additional work, accepting the purchase as is. That ends several years of fretting about some of the problems with the old place. We are very pleased.

Closing is May 21, possession is 14 days after that. If we can get the bathrooms done (they haven't started yet), we will likely be in the condo before that. We are going to tell Kahle's that we are going to go ahead and change the carpets before they start and that they will have to try their very best to avoid damage. That will allow us to start getting some things over there to make decisions about what goes/what stays.

Week two is a little better--no Zeloda--but I still get completely exhausted in a couple hours of being up and around. Trying to trim down the list of things to do in the condo. At least we are now done with trying to keep 742 spotless. Wanted to go to band tonight, but didn't have the strength. Looks like I am pretty well done with that.

Friday, April 9, 2010

EXCLUSIVE EXCLUSIVE

Well, the first couple that went through our home at 742 Corwin made an offer--full asking price! We approved the offer today but asked to extend the time to closing and possession by several days. While we are delighted that someone wants our lovely home that much, we are concerned about getting everything ready at the condo. We are hoping to have until June 1. While all the arrangements seem in place, we do have to undergo an inspection. We have always been uncomfortable with the thought--the house is 65 years old and nearly all the maintenance over the past 40 years has been done by me. So wish us luck with this.

Thursday, April 8, 2010

Quick Update

So in Series V, the first week has been a challenge. On Monday evening, after my 2 p.m. infusion, I had some quick-onset, abdominal pain. Lasted about an hour. It was intense enough to send us to the ER for a check. The Doc more or less said, "well, you certainly have the potential for pain there, suck it up." So after it went away, he sent me on my way. Tuesday I was pretty well, worked in the condo on walls and electrical. Wednesday, as has happened several times before, I was flat on my back. Extreme fatigue and little interest in even being up. Had a couple of long naps. Today I am better, but my energy is good for about an hour, then I need to sit.

In the meantime, the house has been listed, the sign is up (gulp), and we have two showings yet today and an open house on Sunday afternoon. Good to have the early interest, but we still worry about getting the condo ready (the bathrooms continue to be the problem) if we sell early. Progress at the condo is good: electrical is done, den is painted, wall repair is nearly done, paint decisions have been made for the bedroom and kitchen. All thanks to our dear friends.

Sunday, April 4, 2010

Big Things Happened

In addition to Easter, this was a great weekend for progress. Andy and Wally, Bob and Marion, and we of course--attacked the garage. With everything out on the driveway, four passersby stopped to see if we were having a garage sale. Defiance loves their garage sales. We said, "not yet, but watch the ads!" I am planning a "guys only tool sale" in a few weeks--once I am sure we don't have projects requiring the stuff. Women will absolutely not be allowed and Marion says she will dress up as the "tool time lady" to take the money. That would be something.

So, the garage is done, all patched and freshly painted. It took us two days to get the job done. It has never looked as good as it does at this moment. Far cry from when it used to be filled to the brim with pianos in various states of disrepair.

We had some wonderful lunches and dinners with everyone, courtesy of Beth who sent a complete lasagna meal, and the church that sent left over beef stew. Lunches on the deck, what a great setting.

You should have seen all of us sitting in the garage on lawn chairs and on ladders Friday evening, enjoying the gorgeous weather and the smell of fresh paint. Felt like a square dance to me--or folks in the holler.

Saturday, the activity moved to the condo. I had tried to get an electrician there to move a couple of ceiling boxes and get power to the bedroom fan without surface molding. They didn't seem too interested for these little pesky jobs. So it took a whole morning to get a wire from the wall outlet to the ceiling fan--finally had to buy a wire snake to get it done. Now we can have a ceiling light that can be turned on at the door, and a remote controlled fan. Nice. The ceiling box moves were in the kitchen/breakfast area and took the rest of the day. Had to make a spot for Emily's tulip pendant over the table, and a spot for the wildest little chandelier in the kitchen--wait until you see it. Funky.

I was strong enough to help a good deal, but completely exhausted after the experience. I did not recover much taste this week, which was discouraging. But my energy was certainly a bit higher and I enjoyed working with the "guys." They enjoyed it too, some time away from the office is always welcome. So with a couple more patches on walls and ceilings, the bedroom and kitchen are ready for the painters. Good progress.

Gemzar and Zeloda tomorrow. Joy.

Wednesday, March 31, 2010

Really Late Update

Don't give up on me, gentle readers. We have been really busy--that is certainly good. We enjoyed the DCCB Cabaret Concert, even though I wasn't able to play. I had never heard the band from the audience before and it was a pleasant surprise to discover that it sounds even better out front than sitting in the last row tooting. Sunday we ran to Toledo, Sammy's Club, and a look through some furniture stores. No luck there. Monday we began to seriously take advantage of our dear friends, Bob and Marion. They helped complete the paper stripping in the condo--the bedroom and kitchen are done and ready for wall repairs. Tuesday, Emily and Cathie continued to plan decorating and went to Archbold to visit Rupp's furniture. Bonanza! They called me to join them and we found a beautiful table--40 inch round pedestal with a 24 inch leaf and four gorgeous, padded chairs on casters. Exactly what we wanted but had become convinced did not exist. Also the sleeper sofa for the den--you will be amazed with the color. Mint green! Nothing like we have ever done before.

Today Bob and Marion dug up the ornamental grass and divided it--it is voracious. Then they helped Emily put down Preen in the hosta beds. What great friends! Tonight Andy and Wally arrive to attack the garage right away in the morning. We should be able to get the job done and have them help with a couple projects at the condo as well.

I continue to enjoy (at least to try to enjoy) my week off Chemo. I certainly have more energy but have not recovered my taste or appetite. Had a blood draw today in preparation for my check up the the Doc on Friday.

Isn't the weather great? We had lunch on the deck and the grass is greening up and the perennials are jumping. Hallelujah.

Saturday, March 27, 2010

Tardy Update

Sorry, gentle readers. It has been several days. We have been really busy, stripping wallpaper at the condo bedroom. It was blue/grey/foil swirl. Sounds like a latte of some sort. If you have done this job, you know it is really awful. I tried to help as much as possible, perhaps too much, and have been completely exhausted by mid afternoon. But it is done now, and our dear friends, Bob and Marion, are back from a chilly three months in FL, so they will do the work in the kitchen, sparing us.

I have not had a very good week. Have to wonder how much of that is because I don't expect to have a good third week of the series. Just one more day of bullets to take, and then a week off. I have not had any appetite, no taste, and general fatigue. I did go to the last Bands, Bands, Bands! concert Thursday evening--but left at intermission. In a little while, we are going to the DCCB Cabaret Concert. I had hoped to play, but I just don't have the strength, and playing is starting to bother my stomach muscles, where I have a tumor that is growing near my navel.

To add insult to injury, this morning I rubbed my right eye and had a hemmorhage--a large one--that made most of my eye bloody. Since I am on blood thinners and have a depressed platelets count, we made a trip to the ER. Oncology is closed on Saturdays, so we couldn't use them. We were there for two hours waiting for the blood count (which was acceptable) and for a contact with my Oncologist for a recommendation on my daily blood thinner injection (it was skipped for one day). Though this is a harmless condition, it looks absolutely grisly. I am sure it will likely take weeks to clear completely. The adventure continues.

Tuesday, March 23, 2010

Events Galore

Glad to report that I have felt well enough to attend several events over the weekend--The DC Players did their spring show, You're a Good Man, Charlie Brown, in the Arts and Media Center. We went to the Saturday matinee. The hall is not great for matinees since you can't darken it--in fact, the stain glass windows are beautiful in the sun light--but with a show like this it really doesn't matter. The space worked very well for this little show, intimate with good audience involvement. It was gratifying for me to see folks enjoying the space.

On Sunday, we skipped church, conserving my energy, so that we could go to the Fort Wayne Civic performance of Joseph, and the Amazing Technicolor Dreamcoat. We had planned on attending with Sam and Cathie, but they had to make a quick trip to Texas for Sam's oldest brother's funeral. Instead, we took Kris. We were so glad we attended as this was the very best production we have ever seen there. The cast was uniformly strong--as well as large--and the production was over the top. Costuming, choreography, extra stage stuff, and some adlib all contributed to a thoroughly enjoyable afternoon. After, we stopped at Casa Grille, which is by far our favorite eatery just now. Kris ordered a seafood selection--she loves seafood--complete with mussels and clams in the shell which she handled surprisingly well. She had a good time, was in a good mood, and we enjoyed spending the afternoon with her.

Monday evening, a wonderful piano recital at the A and M Center. This was a bonus performance for the sponsor members of both the Sunday at the Center and the Bands, Bands, Bands! Series. Warren Mailley-Smith, a concert pianist from London, is at the end of a self-arranged recital series across the States. The contact came from one of my friends in the Ohio Arts Presenters' Network. It was a great performance, with Mozart, Beethoven, Liszt, and Chopin--and ending with the piano only version of Rhapsody in Blue. The man is a true virtuoso, liked the space and even the Steinway 7 foot, which is pretty well worn out I think. Again, the space is absolutely wonderful for this kind of event and I am a little over whelmed with seeing it. I think this will be a legacy that folks will continue to use and enjoy.

I had week three infusion yesterday and am back on the Zeloda for the week. The switch to Miralax from Senna seems to be working better--particularly less cramping. That is good.

Friday, March 19, 2010

Update

Not a lot to report--the weather has been so beautiful. I sat on the deck (never dreamed I would so early in the season) for a couple of hours and read. How wonderful to feel the breeze, hear the birds--and the kids on campus blasting their music! Gives a man a new lease on life. The Iris and Lilies are coming up, but way too early. They are likely to get nipped one of the nights. I think they know how anxious I am to see them.

We continue--slowly--to make decisions about the condo. Emily continues to do some long-needed cleaning and thinning of drawers and storage areas here at 742 Corwin. Decisions are constantly being made about what goes with us, what might sell, and what Goodwill gets. We have a lot of very nice furniture that probably won't bring much on the used market but was much loved here. Neither of our kids need any of this, so sacrifice is called for.

I haven't really had a great week--I have managed to do somethings outside and help Emily as much as I could, but fatigue continues to be a problem, not to mention relentless agony "down south." I am going to try some different remedies, seeking better control instead of the guessing game on one enough/two too many. I have been eating well, going out a lot, but my taste is not great and I don't get as much enjoyment from eating as I wish. Beef continues to be what tastes the best and anything that is relatively spicy. Sweets are a complete wash, I don't crave them, and they don't taste good. Just as well as it just means more insulin anyway. Wendys' Frosties continue to be the one exception--they always go down very well.

Next week is week three of the sequence, infusion on Monday and the oral Zeloda all week. Then a week off. That week will end with a working visit by our two "boys," Andy and Wally. They are going to do a quick patch and paint in the garage. It is the one space of the home that hasn't been touched since I originally dry walled and painted perhaps 35 years ago. When we bought the house, the garage was unfinished and didn't even have a door. I was obviously in a hurry, because it isn't my best example of drywalling. It will be great having the guys here and surely a big help because I don't have the stamina to climb ladders and work over my head--well, maybe for 10 minutes or so.

Wednesday, March 17, 2010

Report and update

So the concert on Sunday evening was spectacular. The stage at the Arts and Media Center was full--about fifty singers and a whole battery of percussion instruments for one of the contemporary pieces. The programming was imaginative and unusual but varied, the performance was impeccable and the facility looked and sounded great. It was very gratifying for me to sit there and watch this unfold. Most of the things the DCCC wanted to do have been accomplished. And there had been a show there last week--Young Peoples' Theater Guild--and there is one this week--DC Players "Charlie Brown." It is a real performance center. Even Fort Defiance Players will do their summer show there this year. I am very pleased indeed.

Gemzar infusion on Monday was uneventful--I had fewer effects than usual but continue to battle constipation. I know you have heard enough about this.

We have signed for the condo, it is ours now--some additional expense for a few months. And the deposit on the bathroom redo has been made and I urged them "full speed ahead." We actually bought a used wicker patio set for the screen porch already and are looking for the other furniture pieces that we will need.

And the decision has been made to list our house on April 5. That puts the pressure on to get the clean up/repairs done around here! At least the weather is cooperating for now--unless we get a late snow and freeze, it looks like an early spring that will play into our plans nicely. Keep hoping.

I have decided to write a series of "Taking Stock" postings. I want to reflect on our lives a bit--you are free to read or not. I will continue to report my treatment and progress as well.

Maestro, Maestro - verse 5-- and the last!

Maestro, Maestro, we salute you with a verse of "clap your hands."
Ave Verum, Mighty Fortress all 3 settings we intone.
Introit, detroit, descant, solo,
Camel songs sung Acapulco,
Flailing arms and sweating brow
To you dear Maestro we now bow.

Some references to pieces in our library here--and a couple inside jokes. We always referred to the final response as the "detroit" to parallel the Introit. A capella became Acapulco. And I never completed a rehearsal without sweating profusely.

Sunday, March 14, 2010

Periodic update

Sorry, gentle readers. I am remiss--several days with no posting. Don't really have an excuse except that I have had a couple of bad days with my continual bowel battle--a Bowel Bowl--Colon Conundrum--so to speak. I certainly hope that this is not an indication of what I am in for as the series continue.

Otherwise, a nice week. We continue to plan the bathroom remodels at the condo. The work is going to be done by Kahle's construction--the Kitchen Center on north OH 66. And it is going to be a full gut job--everything will be new. The larger one will be done much like our current guest bath: while with black touches and with wainscoting. The smaller/master will have sand colored fixtures, also similar to our present tiny master. The only set back is that the work can't begin for about six weeks. Since we close Tuesday, we would like it to be faster but there are matters of material orders and scheduling to consider.

We have been able to get out to look at decorating possibilities and to do some shopping. Today we went to church, then to lunch. Tonight is the last regular concert in my Sunday at the Center Series, and it should be excellent as it is the Masterworks Chorale from Toledo. This is a forty voice group and that should fill the little Center with glorious sound. The new season, planned by Andrew Schultz, will be announced tonight. I have had a preview and he has done his usual fine job and is taking the series to a slightly different direction--nice, why else have a change of leadership?

Tomorrow is a Gemzar infusion--Series IV, Week 2. A week without Zeloda pills. Great.

Maestro, Maestro - Verse 4

Maestro, Maestro, we all love you and the way you've led us on.
No processing and no robes but many threats to wear chiffon.
Puce, brown, green, and tessellations,
This is how we know which song.
Titles have no recognition,
Who the heck is Jean Racine.

Better explain--the choir sings from the rear organ balcony, so it has never processed nor worn robes. But many times, a slightly swing/sway anthem has led to the suggestion that the women wear something frothy. With a folder full of music, any quick description finds the next piece--color works well--anyone know what tessellation is? Just one piece in the library had that on the cover. And also just one opus by Jean Racine-- never have seen another anthem by him and we never tackled the original French text.

Wednesday, March 10, 2010

Crazy Quilt

The "irreverent" choir of St. John UCC is indeed a crazy bunch. Here are a couple of images of the quilt that they presented to us in recognition of 35 plus years of putting out an anthem a week. Note the nice choice of fabrics with a music theme--where would you find something like that? The close up shows two previous members' names, Ave Barr and Ruth Ludwig. And the last square catches everyone who ever "sat in" on Christmas or Easter or other special occasions.





Maestro, Maestro (verse three)


Maestro, Maestro, we adore you and your love of music greats.
Bortniansky, Cherubini, Zingarelli, Rutter too.
Handel, Mozart, Stroede, Luther
Mendelssohn, Schuetz, Frank and Bach.
Chanting psalms and singing anthems,
Choir makes the service rock.

So here I am in series four, week one, day three. Fighting the usual colon conquest, this is usually not a good day. There are things I need to do but no energy to get it done. Yesterday was better than usual, I made it to band for the second week in a row. It is fun to go to rehearsal, though I doubt if I will be able to do the performance since it falls at the end of week three--a pretty dicey time.

Monday, March 8, 2010

Weekend Outing

Emily and I had a nice outing. We drove to Toledo mid afternoon on Saturday and checked into our motel. If you ever have a need to stay over in Toledo, try the new Hampton Inn and Suites on 795 at I75. This is the nicest Hampton we have every used. The rooms are large and nicely decorated. The beds are particularly plush and very comfortable. Emily does not like the design of the bathrooms which have the vanity in a niche of the room. The stool and tub/shower are in a separate room. It makes it impossible for one person to get up without waking the rest of the group. But this little quirk doesn't take away from the rest of the benefits--including a staff that seems very well trained and exceedingly polite.

Another advantage is location. It is only 10 minutes to downtown on I75 and a similar time to Levis Commons. We went there and looked around briefly, then had dinner at a Greek restaurant. We thought it was going to be Italian, but no--and Emily had a tough time finding something on the menu to eat. She finally decided on a pizza which was made on flat bread and had a lot of tomato slices--in summer it likely is scrumptious but winter tomatoes leave something to be desired. I had the best Greek salad that I have ever tasted--followed by stuffed cabbage rolls. So I was happy.

The TSO concert featured Sax Fourth Avenue which has a Defiance connection, having performed local several times and having one member who is a Defiance High School Band teacher. They played Phillip Glass, thankfully not as minimalist as I had anticipated. Though there were moments when you wished he would move on. Their encore was a greater success and they received an enthusiastic Toledo standing ovation. I suspect many in the audience didn't realize that saxophones could make music other than big band standards! With a young guest conductor, the orchestra's rendition of Scheherazade was the best I had ever heard. It was carefully crafted and balanced and soloist were superb. In all, we both enjoyed the performance.

Sunday morning we were up early as usual. Old folks don't sleep late even when they are in a nice bed away from home. So we passed on the free breakfast and went to Bobby E's just south of our location. A three egg omelet hit the spot. We lounged some, read USA Today and watched Sunday morning on CBS. After a quick stop at Sam's Club for some supplies, we got back to Defiance around noon. It was a nice break from what we do here on a day to day basis and I am so glad we decided to do it.

Friday, March 5, 2010

Check-up Report

Just returned from my monthly check-up. The news is good. Blood work shows the tumor markers still going down--an indication of their slowed activity. Liver functions are still improving. The CT scan seems to be neutral--that is, some of the tumors are smaller, some are slightly larger. There appears to be no significant new activity. So the recommendation is two more months of the same regimen that I have used for the past three months. Gemzar for three weeks, Zeloda every other week. Then a week off. Now that will put us into spring for sure!

So rejoice, things are going as well as we could hope for. Thanks for all of your support, the expressions of concern and love are important and have been a real boost to me.

A Wonderful Surprise

The St. John UCC choir, which it feels like I directed forever, surprised us with a touching and entertaining surprise Wednesday night. They asked to come to the house after their usual 7 p.m. rehearsal. The whole troupe showed up, en mass, formed a semi circle in our living room, and sang a five verse homage to the tune of Hymn to Joy (with apologies to L. von Beethoven). Here are the first two verses:

Maestro, Maestro, we applaud you, and we want to make a fuss,
To acknowledge your direction over 30 years and plus.
Singing faster, singing slower,
Singing louder, singing soft.
Peppy carols, Lenten dirges
Wafting from the choir loft.

Maestro, Maestro, we admire you for your varied repertoire.
Leading us through sacred music, we your own irreverent choir.
Fearless, singing with conviction
No attention to our diction.
Garlic blessing, slaughtered Latin.
Slumber snot is what we've got.

The clever lyrics, crafted by Robyn, are filled with inside jokes that require some foot notes. We have long called ourselves the "irreverent choir" as we have had way too much fun poking at our literature, our services, and each other. Not a vocal person, I have never had much concern for diction--the goal is the right notes in the right places, in tune if possible, and once over lightly. Garlic blessing is what we called "Gaelic Blessing" by John Rutter. Our Latin, as we have several anthems that we always did in the original language, was truly utilitarian approximations. Slumber snot is what you get in "He Watching over Israel, slumbers not nor sleeps" when you aren't very careful. I will give you some more of this in succeeding postings!

After the singing and presentation of the lyrics, we received a wonderful lap blanket with monogrammed blocks containing the names of everyone who has sung in the choir over those 30 years--surrounded by a variety of musical note fabrics--the work of of Judy. And a pillow autographed by all the current members. What a wonder tribute by an incredible bunch of folks! Thank you to all who helped make this happen.

Tuesday, March 2, 2010

Free Week Arrives

It was a fairly pleasant weekend. We enjoyed the high school musical Sunday and made it to church. Went to Wendy's for lunch one day--chili is one of the things that I can always taste, and it is even better with a single HB on the side! After church we went for lunch at the hospital, as we have for a couple of years.

So this is the week off, a reward for having completed another month of chemo. Still, I had to show up yesterday to be stuck for a blood draw and then endure the pre-CT scan prep of drinking about a gallon of contrast dye. It amounts to six glasses of the delightful stuff, fifteen minutes apart. So it takes an hour and fifteen minutes to complete. The CT is quick and efficient and includes another contrast that is injected into the IV line.

All this is in preparation for my exam on Friday. Some apprehension about the findings, of course, but like the entire deal, what will be is what it is. Have to handle it the best we can.

This should be a good week as I really never had serious problems last week--in a couple of days I should be able to enjoy pretty normal taste and have as much energy as possible with a jolt of Prednisone. We are planning on going to a Toledo Symphony concert on Saturday evening--the first one since Beth and I went Thanksgiving weekend (and before I started treatments) that has fallen on a free weekend. The others I have given away. We are intending to stay overnight so that I don't have to drive back to Defiance at 11 p.m. We will see how the plans work out.

Saturday, February 27, 2010

Large Herd

So one of the things that Emily and I have enjoyed over the years, our backyard, was exciting last night. We watched a herd of deer, final count was 21, mass up and take their good natured time to cross Corwin Street. I think this was the largest groups we have ever seen together. It is the snow cover, of course, that is making life difficult for them. This is the time when our shrubs and trees are in peril. They have eaten the English Ivy under our tree (well, what used to be a tree) in the front yard several times. Our flowering shrubs, literally a foot from the house, have been nipped (that means no blooms in the spring) as well. I doused those with "deer-be-gone" spray in the fall and so far it seems to have saved them.

We are also bird watchers with several feeders--the gold finches seem plentiful in the winter, but we had only one pair who stuck with us over last summer. We also have a flock of wild turkeys that have come to the feeders on occasion. This winter we have had four toms traveling together, (the gay caballeros) I have called them, who have made themselves pests. Just now they aren't around and we hope they have found a more generous benefactor. We will certainly miss all of this when we move.

I am down to the last two days before a blessed week off the meds. It hasn't been bad--I have continued to eat solid meals, the slime index has been very moderate though I have very little taste at this point, and I have had no mouth sores at all. Though constipation continues to be a threat, I have managed that without a lot of problems. But I have had a lot of fatigue. I seem to be able to exert myself for an hour or so, then I am ready for the recliner--or a two hour nap!

Monday is the CT scan, news from that will wait until my checkup on Friday.

Thursday, February 25, 2010

Periodic update

So Gemzar III with Zeloda has turned out to be a fairly decent week. I am amazed how the reduction of the oral med has changed my condition. No slime, can still eat solids fairly well. No mouth sores, not even the "bumples" that are usually on my gums. Constipation was manageable. Wednesday was still a "sag" day, spent most of it in my chair. Extreme fatigue with some abdominal cramping. Fortunately I have an anti-spasm med that I can use when my gut objects to all the attempts to keep things moving.

We missed the tournament games at DC, but both the men and women managed to win without our support--and they advance to the next round tomorrow. The high school winter musical opens tonight and we always attend that, so I am hoping that I have renewed energy the next couple of days.

We continue to ponder the move to the condo that is in our future. Thinking about what we have here that can fit over there is a painful process. Obviously, a great deal of our things will not make the trip. Parting with a life time's collection of "things" is painful, but necessary. The place has to feel like home a little, doesn't it? So the winnowing will go on for a few months.

Tuesday, February 23, 2010

Gemzar III

We had a very nice weekend. At the spur of the moment, with mom home from work for the weekend to care for Kaylin, Beth and Wally decided to come home to Defiance. We had a nice visit, dinner at Bobby E's (the chicken parm still taste darn good to me), and Sunday lunch at the DRMC. It was good to spend time with them without the entire tribe. And I am sure they felt the same way, as Beth is a full time baby sitter for the most part. They had a chance to see the condo and put their ideas into the mix. A very pleasant weekend indeed.

This week is the third Gemzar infusion, along with the oral Zeloda. This is actually the first time I have been in that situation. The first month was both for a week, then a week off. The second month during week three, the Zeloda was pulled because of mouth sores. With the reduced dosage of Zeloda, I have no mouth sores (yet), very little slime (yet), and am able to eat regular food (as of today). Nonetheless, I have very little energy and tire quickly. There are several things I would like to do this week, we will see how it goes. I have been able to get out some, but not to the extent that I would like to. We have had snow cover now for a couple of weeks, unusual for Ohio. This week's temps are to be well below normal, so there won't be much melting for another week. Winter still has us in a tight grip.

Friday, February 19, 2010

Periodic update

It has been a mostly good week. I continue to struggle with my intestinal tract--that has been ongoing from the very beginning and my main side effect. But by the end of the week, things have usually leveled out well. My appetite is just not there, but I continue to eat solid meals--only one Ensure meal breakfast this week, otherwise it is heavy on the eggs and bacon!

Our bid on the condo was accepted (a big surprise) so we are ready to start planning a transition. Closing is on March 16, then we can try to get the work started at the new place. Primarily the bathrooms which have not been touched since 1962. The best idea seems to be to gut them, but both have floor to ceiling ceramic tile, an expensive proposition.

We have gone out to eat a couple of times, including the College's Empty Bowls soup/bread/dessert event last evening. This is a fund raiser for our local homeless shelter sponsored by the Social Work Department. The response has been phenomenal, leading to it being located to a bigger hall. It is always well attended by DC faculty and staff so it gave me a chance to see many of my friends. That is always a welcome lift.

Also spent some time with Andrew yesterday, talking about the concert series downtown. He is now a part time employee of DCCC, helping to complete the staging of the remaining concerts this year and planning next year's series. Once again, I am greatly impressed with his work and eternally grateful that he is here to carry on with a very vulnerable, fledgling concert series. It looks like he will have a great line up and exciting events for Defiance.

Tuesday, February 16, 2010

Periodic update

I've been feeling really quite well, over the weekend and through infusion day. No problems eating, my taste is not bad and the slimes stayed away for the most part. The reduction in the oral chemo has been a good thing I think. Made it to church on Sunday and went to the DRMC for lunch as usual. Sam was with us as Cathie is in Atlanta for a week. The chicken parm and spaghetti was tasty!

I now have a CT scan scheduled for March 1. No one is particularly anxious for this to happen but it needs to be done to direct the continued treatment. Feeling as well as I have for a few days, it is easy to forget that this is a progressive disease that can move quickly if we aren't doing the right thing so additional information is good.

We put in a bid on the condo on High Street yesterday. If we can get the property tied down, we can plan the reno's necessary there as well make some decisions about what needs to be done here in preparation for listing sometime in the spring when the grass and flowers are looking good. All of this looks doable, but of course the condition of my health is a wild card. I think of my life in month segments now, as the chemo cycle consumes a month. So just one more cycle and it is April! April flowers and all that. Glorious spring!

Monday, February 15, 2010

Fashion Statement

Well, I was getting hair all over everything: on the floor, in the shower, on my clothes. I had a crew cut once--in college. Everything comes back in style eventually. Anyone who wants to join me, it's a number four attachment on the clippers!

Saturday, February 13, 2010

Periodic update

This week has been good--slime never really became a problem, absolutely no mouth sores, and the ability to eat real food, even though there is very little appetite. The reduction in Xeloda obviously has made a real difference, and I like it. Should be a good weekend, perhaps some outings in the offing. Further south, I still struggle with a rash/infection that will finally get me to an Urologist on Monday. I've had just a touch of constipation, but I continue to pop stool softeners like candy.

Many of you know that we have lived in the same house for forty years. Since I retired six years ago, I have greatly expanded what already was an extensive array of gardens, flower beds, and landscaping. Well, those decisions don't always turn out like you intended. I simply will not be to do this work anymore, nor manage a fairly large lawn. So we have made the decision to finally move on. We are looking at a nice condo, of which there are very few on the north side, and trying to figure out what we would do with all the furniture and "stuff" we have collected over nearly half a century. Painful as this is for us and our kids, there seems little choice. Between the expense of having the lawn/landscaping/gardening/snow removal hired out and the cost of maintaining a sixty-five year old three bedroom, two bath, house for just the two of us, it seems inevitable. Life goes on.

Thursday, February 11, 2010

Periodic update

I am able to eat three solid meals these days, but the slime is beginning to rise. I have a whole arsenal of tricks to use now, thanks to many folks' suggestions.

Tuesday I felt quite well, was able to use the snow blower, but was very tired. Tuesday night was rough. I didn't want to have a repeat of the restlessness of Monday, so I took an Ativan--and later, when I woke up at 1:30 (every night without fail), a Benadryl. The result was a night of weird dreams, disconnected things that left me mystified in the morning--and unable to explain what I had dreamed or what I remembered. Took me quite a long time to get my head back. And I got up with a low grade temp, 100.7., and dizzy. It was a crash day. The temp came down with a Tylenol but I was pretty well flat all day with fatigue.

For what ever reason, the drugs have hit me harder this time. So with the 8 inches of snow fall, thank God for Freddy G. who came down twice with his blower to do our drive way. The help that we continue to get from friends and neighbors has been a blessing. Today, I am much better and will get out for some errands. Things usually improve toward the end of the week as the Gemzar begins to fade.

Tuesday, February 9, 2010

Series III, Gemstar I, Day 1

I didn't report on my check up last Friday, too much weekend excitement. It went well-- had a good conversation with the Doc and he answered all my questions. He said the numbers were going the "right direction" and we agreed that the tumor near my navel that can be felt was smaller. So off we go on another month-- he will schedule a CAT for the first week of March--the next week off. The only change made is that my Xeloda is reduced to three tablets twice a day, from four. That is to try to avoid the mouth sores that led to cancelling the second series last month.

Since I was virtually "normal" at the end of last week--no Pred, no mouthwash, eating normally, bodily functions normal--I am going to try to better document the side effects as they appear in this series. Of course the accumulative side effect, losing my hair, continues.

So I started the Zeloda Monday morning, then had my infusion at 12:30 rather than early because of scheduling at the hospital. It knocked me down pretty good. I had my usual "Kennel Cough," shortness of breath with a nonproductive hacking. It ran longer than usual, was still going when I went to bed. It is gone this morning. The lungs seems to take the brunt of the infusion and I have some hot flashes as well for the first few hours. But between the two drugs, I spent most of the rest of the day in the recliner. I also had a restless night, as the pre-infusion drugs leave me a little jittery. I can make up for it today (Tuesday) with a couple naps, as we are getting a lot of snow and won't be going outside until it is time to clear the drive--likely not until tomorrow.

Monday, February 8, 2010

Wild, Wonderful Weekend


The time with our dear friends was perfect--they missed the terrible weather out east, everyone was healthy, and I felt the best I have in months. We talked, ate, talked, ate--you get the picture. When you have been close friends as long as we have, the years just melt away and it seems that we are all back here again, together, instead of spread out over the east. It was an incredibly good time and I am humbled that they went to the time and expense to be here.


I was thinking of doing a food journal for my gentle readers, but it would be time consuming, and frankly--embarrassing. I will just give you the high points: the weather on Friday took a bad turn and though the As arrived a couple of hour earlier than the Bs, it was getting messy by the time we had planned on going out for dinner. So Emily and I pulled together a spaghetti and meat sauce dinner, with salad. Led to a long visit at the dinner table, much more pleasant than fighting the cold and snow. Saturday morning, I got my self running early and put out a pancake, bacon, and sausage breakfast for everyone. We went to Kissners' for lunch, which you see above. Hamburger, potato wedges and chili for me. The cocktail hour started early that evening, with a huge munchy spread that included Greek grape leaves from a Detroit deli, several dips, and venison sausage from a special friend. We pulled ourselves together to go to Stella Blue in Archbold for a great gourmet dinner, joined by Sam and Cathie. Saw a lot of Defiance folks there, including the director of Defiance's chamber of commerce and his family! C'mon, Defiance, how about a decent, locally owned, supper club? Sunday noon, we went to the fine dining at Defiance Regional Medical Center--they had read about it in the blog, wanted to experience it first hand. A long afternoon of chatting Sunday, and the left over muchies came out, followed by a Walmart super, large pizza! What a weekend.

Friday, February 5, 2010

Fantasia

So, tap, tap, here we go. Cue woodwinds, kind of a low, burbling Midsummer nights dream thing. Great expectancy. No crescendo yet, winds. Just as a teaser, oboe motif, nachos with cheese, can't wait for the main tune. Some nice chewing music in the clarinets. Cresendo, strings shimmer with a preliminary statement of the idee fixe. Iceberg, with black olives, banana peppers, tomato, onion, abundant mozzarella, and a really good Greek dressing. Strings soar, in octaves, poco a poco, to a gallant theme with just a hint of Italian Baroque texture. Fresh from the oven, toasty and crunchy, a great hoagy bun, filled to the brim with Italian sausage, pizza sauce, banana peppers and some veggies! Just bite in. Brass, doubled at two octaves, ff, sfz, a simplified, triumphant version of the theme. Timp roll, cymbal crash. Ecstasy. Nancy comes out for a bow.

Wednesday, February 3, 2010

Interim Week, Day 3

Well, where to start. It has just been a whirlwind (guess you can sense how dull it usually is in my skin). I have felt rather well, good energy, able to eat (even if it isn't all enjoyed), and able to stay awake at night long enough to be active. Amazing what some distance from these drugs will do for your good will.

So Tuesday we spent some time on campus, running errands and talking to folks (the few I still know). Thanks to a wild rumor from my daughter, dinner was planned for McD's. Seems that the McRib is back--at least it was in the Joliet, IL region. The young lady (and I mean young) behind the register had never even heard of a McRib. The innocence of youth. So I made do with my usual two burgers, McFries, and added a shake for good measure. Tasted pretty good, would have been even better if the McFries tasted salty.

Tuesday evening was the first rehearsal for the second semester College Community Band, so I took my euphonium and sat in. Didn't play much, but that was much more a result of a weak lip than Chemo. It was good to be there, had some fun. After, the usual group went to Frischs for pie. They have a no-sugar added cherry one, but it certainly didn't taste very good. Ate it any way.

This morning I put down two eggs, over easy, two slices of rye toast, and one Bobby E's sausage patty. Then this noon, I met my two lunch friends from campus and had Mexican--a burrito, and it was spicy enough that it tasted great! I am trying to do it all before Monday, when the great descent begins all over again.

On the more mundane (and not much related to food), I went in for labs this morning in preparation for my appointment with the Doc on Friday noon. I still would like to have him talk more, so I will attempt again. He is truly a man of few words. Pokes, prods, listens, says nothing.

Monday, February 1, 2010

Interim Week, Day 1

We didn't make it to the ball games, nor to church on Sunday. I continued to feel fairly exhausted, just didn't have the energy. But I did have a hot dog, two in fact. On one of our outings, sent Emily into Chief for wieners. Don't you know she came out with $4 a pound all beef? Hardly the kind of thing you put ball park mustard on!

My sense of taste is slowly returning--except for salty. And you know how I love salty. Sure cancels out the Mcfries. We did have our Sunday dinner at Wendys and granddaughter, Kris, joined us. Managed to eat a single, everything, no cheese. And their Frosty is a nice thing. That makes for a great treat, and I didn't eat more than a third of it, so my glucose didn't spike. I may return there!

This is the week in which we look forward to a visit from our life-long friends, the Barrs and Adams. We all met at DC, about 40-45 years ago. Our families became close and we spent all the holidays and birthdays together. After they moved on from DC, they continued to spend Christmas here for many, many years. In the past several years, our reunions have been less regular, but equally joyful. Even if I can't enjoy the feasting, it is going to be a glorious weekend.

Saturday, January 30, 2010

Gemzar III, Day 6

So as the week progresses, I keep hoping for a return of taste so that I can look forward to eating real food. I think I sense a little more with my morning OJ, so I am optimistic that the week off will bring the opportunity to enjoy some solid grub. I have spent a week fantasizing about places I want to eat! Needless to say, if this doesn't happen, I will be really disappointed.

Otherwise, I continue to feel quite well, but weak. No energy at all. Of course, what would I do with energy? The weather is way too cold to spend time outside and there isn't really much to do anyway. There are two BB games on campus again today and if I am up to it, we will likely go to part of one at least. I doubt if I will be able to try a hot dog, but who knows what will happen when the popcorn aroma hits me? There I am, dreaming again.

Thursday, January 28, 2010

Questions? Go to "The Source"

Readers, Deb is a long, long, time dear friend--and we share a birthday. She is a cancer survivor and a research nut--there is very little about cancer and cancer treatment she does not know--and if she doesn't, she will find it. If you have questions, she would be glad to respond. And, she may bring you some guardian angels like the ones that watch over my bed and sofa.

Her suggestions have been very helpful to me over these weeks and I will certainly try this latest tip--now! And she is right, she knows I slight my fluids. I have never liked to drink (water that is) and just don't have the "carry around the water bottle" habit. I know how important it is, just have to keep trying to do better. Thanks, Deb.

Gemzar III, Day 4

I feel quite well actually, clear headed, on my feet, able to work on some things. The Pred is likely responsible for that, though I usually need a quick nap early in the morning. On rising, I am quite weak, hit it quickly with a couple OJs, and an Ensure or Boost as a chaser. That allows me to take the Pred and get the day started. A bit later, I try to eat something solid--now that is still hard. I can get down soft scrambled eggs and crisp bacon as long as I have a glass of something in case it gets caught up in the slime. Yeh, I still am fighting the slimes.

No one, especially me, is surprised that nothing has any taste other than a non-descript brown kind of flavor, including plain water. But I am having trouble finding anyone who has experienced the slimes. It feels like my saliva has thickened, as my tongue and palate are always coated with what feels like petroleum jelly. If you chew anything (and especially something spongy) more than three times, it turns into this ball of slime that CANNOT be swallowed! I have tried using my salt/soda/warm water rinse several times as well as brushing my tongue and palate-- that seems to help some, but it quickly reverts to slime. Gentle Readers, any clues would be welcome.

I will certainly continue to use liquid diets as a way to try to get adequate calories--all agree this is desirable and that I can live without a lot of solids. We have the blender out and some fresh fruit-- strawberries actually almost taste like strawberries to me. With some canned fruit as well and one of the liquid enhancers--or ice cream--I am able to add some calories throughout the day.

We had a little snow last night, again the neighbor blew it off our drive-- how great to have friends like that. The snow has made everything clean again, nice to look at out my patio doors and hope that this brings us one snow closer to spring.

Tuesday, January 26, 2010

Plan detour

So this was to be Gemzar III with Zeloda week-- but because of my mouthsores, Dr. Muler (who is on vacation and unattainable this week--can you imagine how badly an Oncologist must need a vacation?) does not want me back on Zeloda until he sees me. That is not until a week from Friday. So I just had the Gemzar infusion, despite having a slightly low platelet count. My white count was good, near normal. Have been off Zeloda for over a week now and it will be three before I restart. Now the good thing about this is that my full week of recuperation, next week, will be one that is distant from Zeloda. That is good news, Barrs and Adams!

My MMW has done a good job on the mouth sores, most are gone for now but I am told that they will come and go as a side effect of the drugs. I was doing OK on liquids but this morning I threw caution to the wind and had bacon and two scrambled eggs. Went alright but it becomes more difficult as the day wears on. It is reassuring to know that I have the fortified liquids to fall back on and that they seem to restore some energy. I have been off Pred for two days now, don't need it with the boost from the pre-infusion drugs. Matter of fact, I had my Monday night problems in getting to sleep last night-- probably 11:30 instead of the ritualistic 9 p.m.!

Monday, January 25, 2010

WEEKEND HEADLINES

Highlights:

The New Lenox Moehle's visit Defiance - Beth and and whole tribe come for a weekend visit, fun was had by all as there was always babysitting available

Kaylin Jane enters into the church of Jesus Christ - a family baptism ceremony honors the youngest of the clan, age 3 months

Grammie has abundant baby time - Great Gram, Emily, has Kaylin the majority of the time

Kaylin, the wonder child - a baby who doesn't like to sleep, alert, prefers to sit up all the time, enjoys her swing in front of TV cartoons, rarely makes a fuss, and smiles at the merest suggestion

Maestro finally shows for a concert - managed to go to the Sunday at the Center performance by the Toledo Trio - magnificent, and the hall looked great, very proud.

Concert Dedication - The Small family, sponsors of the performance, did a very nice - and touching - dedication to Maestro

Lowlights:

Maestro was not the life of the party - the end of the second week of Gemzar came with some mouth sores, and the inability to get any solids down-- a liquid diet is the present situation, tough to get enough calories that way, more weight loss is certain

Friday, January 22, 2010

Suck it up

You know that old thing about "when the going gets tough," well I am trying. And a couple of my gentle readers have suggested the "magic mouthwash" thing and it is on its way. Only the insurance company is not amused. Again, that is Medicare Part D, which has paid very little to this point compared to Medicare A that gets hit with the $3600 monthly Zoloda tab as well as the infusions. If the MMW doesn't do the job, I will likely be held back from the Zoloda a week until my mouth heals.

So my Doc says that the best hope to control my bowel problems is to stay on the Senna and Colace everyday, increasing the dose if it isn't sufficient. I will do that, but anticipate some abdominal cramping as that has been a problem as well. Guess I will go ahead and double the dosage on Monday with the third infusion to try to head off the block I have had the past two weeks.

Boy, I never thought I would have trouble eating. Absolutely nothing the past couple of days is appealing, quite the opposite, and nothing tastes good or tastes at all for that matter. So Emily keeps bringing things home from the grocery and I keep studying them over and the back stock keeps grows. Gentle readers, not even McD sounds good right now--or that hot dog with ballpark mustard. Can you believe it?

Thursday, January 21, 2010

Two weeks of Gemzar

So the second week of Gemzar infusion has been more difficult than I had hoped. Primary problem is coping with the constipation which is incessant, but I also have increased mouth soreness which completely voids any sense of taste. That makes it more difficult to eat. Have to eat to live. Nonetheless, I got out Wednesday to have lunch with two very dear friends and to have a nice long visit. An outing like that tires me rather quickly so it's back home for a deep nap. I seem a bit better this Thursday morning, so perhaps the infusion is waning a little and I will have a couple of better days.

This week was an untested one and I can certainly see why my Docs thought a week on, a week off was a good way to start the Gemzar experience. I wanted to see if the side effects were Gemzar or Zaloda, found out in no certain terms. Next week should be fun. Day by day continues to be my plan. Will get out today and get some fresh air, that always helps.

Tuesday, January 19, 2010

Periodic update

Sunday was good, felt well enough to go to church the second Sunday in a row, and to the hospital for lunch. Enjoyed a huge piece of beef, billed as Prime Rib, but closer to pot roast. Mashed potatoes, gravy, corn, enjoyed it all. May have over done it as I felt less well the rest of the day. We had Kris over to watch an "instant" movie, something with talking dogs. So I kind of absented myself, spent the time working on one of the most frustrating picture puzzles we have ever attempted. It will be a struggle to finish it by Friday when we need the table for our company.

Monday, back to DRMC for a Gemzar infusion. Didn't really feel well in the morning and less well after the infusion. Spent most of the day down, with general lethargy. Did manage to eat some and spent some more time on the puzzle. Had to go back out to visit with Dr. Bob for what turned out to be a fungal infection in a place I don't want to discuss. Though I am seeing increasing problems from the treatments, I have yet to really have any serious ones that are debilitating. That is good. Everyday I hope for a good one. Need to get on my feet and move, maybe today is the day.

Sunday, January 17, 2010

Score Board

Lady Jackets - 81, Franklin - 63; DC men - 99, Franklin - 83; Maestro - 2 McBurgers, McFries, plentiful catsup, 1 Hotdog, ball park mustard and more catsup; Glucose meter - 411 (gasp); MVP - 14 units of insulin.

Saturday, January 16, 2010

Pred Report

Well it looks like the Prednisone is working pretty well for me. I have been up and around, went downtown yesterday afternoon (in my little car which hadn't been on the road for a couple of weeks, it is terrible in snow) and had coffee with Vince for an hour. Man, it was good to be out with real pants on and see folks going about their normal lives. I don't really have any appetite, but I can eat when it is time. Put down half a Subway yesterday in good order. Thinking hamburgers already today. I feel a little edgy and am awake a bit more in the evening, but only mildly so. If I could get my bowels regulated, I think I would be in good shape. This is, after all, day six and I am headed for a week of no Zeloda. So Pred is a good thing.

There are two home basketball games on campus today and I think that we will be able to go to a portion of them. One of the new problems is that I have lost some of the padding on my butt--sitting on hard benches is different than it used to be. Just realized that if we go to the game, there are hot dogs! Now I haven't tried one of those yet. Note how I seem drawn to the things that I tried not to eat before. I am certainly less concerned about my fats these days. Bring it on!

Thursday, January 14, 2010

Writer's block

Yeh, blocked all right, but in the south end. I haven't really had a chance to evaluate how much the Pred has helped me the last couple days because I have been struggling with the worst case of constipation that I have ever had--by far! I knew this was a developing problem over the weeks and have tried to get out front (well that doesn't sound right either) with the recommended over-the-counter treatments. Too little, too late. This afternoon I finally managed to breach the dike. Or something. Sorry for the distasteful stuff, but you have no idea how important it becomes in my life (Emily's too, as she had to run to the Pharmacy a few times).

A note to those of you who noticed the editing on the last posting: I had some upset folks who were taken back by a negative turn in the last couple of sentences. I am not negative, haven't had a day of depression so far, don't plan on having any. I am in this all the way, will do what ever I have to do to live everyday out to the fullest. What I was trying to express: it is a real challenge to be able to do anything on a daily basis other than care for myself, but we have to look for the opportunities to get out, see friends, walk on campus and drop in on folks, go out to eat on the rare day I am hungry, and stay in contact with all those that have been so important in our lives. I am dedicated to doing that, haven't exactly figured out how to handle all the needed tasks to create the opportunities.

Thanks to all of you who are taking the adventure with me. Your comments and encouragement inspire me. My love to all of you.

Wednesday, January 13, 2010

Periodic update

So the week progresses much like the previous double chemo weeks. Feeling pretty good the first couple of days, beginning to crash a bit today. So it is a .5 Pred day, we'll see how that goes. The days go so much better if I can eat! When that becomes difficult, it just wears me down even quicker. I continue to have folks who come to visit and that is really nice. Having lost all my usual social contacts as I resigned from all my responsibilities makes a visitor with things to talk about other than the next med a welcome relief.

So, life goes on, one day at a time, good days I hope, looking forward to spring, it would be nice to walk around the yard, search for signs of flowers, rather than look at the snow out the window. Can anyone get it to speed up a little bit?

Monday, January 11, 2010

Prednisone by half

So after a spirited day on Saturday, I split a tablet on Sunday. I am in better control now. It was a good weekend for me. I had a great appetite and felt good. Likely to be a long time until I have a weekend as good. Took advantage of it-- went to church for the first time since Christmas eve. Realized I had never "heard" the choir before, in thirty five years of being in that church. It was a bit surreal. Went to the hospital for lunch (as if I don't see enough of that place) and put down a huge plate of Salisbury Steak, mashed potatoes, and green beans. That was about noon.

Still feeling chipper, we made a trip to Fort Wayne to visit Sammy's (another puzzle for you folks) to restock all our paper products, garbage bags, etc., and picked up some things that we thought I might eat over the next month. Not to miss a golden opportunity, we stopped at Cassa Grille (our very favorite Italian Restaurant ever) where I downed a salad, a loaf of bread with dipping oil, and a great Chicago style pizza (actually I just finished it as Monday lunch). And that was about three o'clock. When you have the opportunity, you take it-- my new life plan.

So today is day one of a month-long plan: had my Gemzar infusion and started a week of Zeloda. Next week will be a new experience with just the Gemzar and without the Zeloda. I am encouraged by my reaction to the Prednisone (didn't take any today and likely won't need it tomorrow, as the pre-infusion drugs are pretty good joy juice), hoping that it will give me a helpful boost late in the week which is the toughest time in the sequence. Peace.

Sunday, January 10, 2010

Prednisone

Took a Prednisone Saturday morning on a day when I probably didn't really need it at all and felt a little jittery and had a good breakfast and carried boxes of Madrigal Feast/Dinner Theater stuff out of the basement room so Bob and Randy could haul it away and had a good talk with them afterwards that was very pleasant and went out for dinner at Bobbie E's and ate a large helping of chicken Parmesan and a salad and a biscuit and watched some design shows and had a little trouble going to sleep--gottagonow.

Saturday, January 9, 2010

Modified plan

So it was a day spent mostly visiting my Docs. Began with my Oncologist. First a blood draw, which alleviated my concern with looking at old tests--then a wait for some of those results. The scales (haven't really lost a lot of weight yet, about 15 pounds, most of which was excess anyway), a physical exam which revealed no evidence of progress of the disease, and a nice long talk. Based on the evidence that I am tolerating the Chemo quite well, the decision was made to move to the "usual" dosage and increase the Gemzar infusions to three weeks on and one week off. The oral med (Zeloda) will continue to be every other week. So once a month there will be a full week off both drugs. At the end of that week, I will have an appointment with the Oncologist. I find this "leap of faith" covering a month at a time reassuring somehow. I left feeling much better about the plan and what he is trying to do.

Conveniently, that week off coincides with the visit from our "out east" friends, a minor miracle in itself. Looking forward to it.

Then we visited with our family practice man. The purpose of the visit was to evaluate my glucose management. It was decided that was going well, that it simplified the management of my diet which is really regulated by what I can get down. The discussion of loss of appetite led to a consideration of beginning Prednisone. Several people had asked me if I was using this--it has been known to help with appetite and energy, two problems that I have had for a couple of weeks. After a check with the Oncologist, I had a new prescription, a new addition to my med shelf, and a new entry in Emily's drug list--which is threatening to spread to a new page! So I began the Prednisone this morning--stayed tuned.

Thursday, January 7, 2010

Periodic update

So here it is Thursday, and I am still waiting for that "week-off-euphoria." At least today I was able to eat a decent breakfast and I have on real pants. And I have felt well enough to have a series of visits, mostly from college friends. Sure nice to have someone to talk to whose life goes beyond keeping track of the meds, injections, and trying to think of something to eat that doesn't repulse.

Yesterday, for what ever the reason, was not that good. I was exhausted all day, took three or four long naps, and never got outside. I think I am over due for a blood test to see what is happening. That is one of the items to be discussed tomorrow with my Oncologist. I am feeling that I don't see him frequently enough (it has been three weeks), that the blood draw before my infusion is inadequate--coming at the end of the week off--and that I don't have a good enough sense of what we are trying to do with my regimen. So unlike the first visit with him, I do have some concerns to address. I would like to see him become a bit more proactive.

Looking forward, the next two "interim weeks" have something to get excited about. The next will include a visit from our daughter's family, including Kaylin. Holds the promise of some "great poppie time." And the following will be extra special. Our life-long friends, the Barrs and Adams, are planning a weekend visit. Haven't seen them for some time. It will be great, regardless of how I am feeling.

Tuesday, January 5, 2010

Here's a Miracle


So meet Kaylin, our great granddaughter. She's a miracle. OK, so, all babies are miracles! She is a special miracle. Though her conditions of conception were perhaps not ideal, and her single mother's life plan didn't exactly include this just now, she is a bright, alert, active, smiley, happy little tyke who is loved to death by her mother, her grandmother, and her grandfather. Yeh, we like her too. Regardless of what happens to me--or when--Kaylin is going to be the center of attention and offer unconditional love to everyone that needs it. Miracle indeed!

Periodic update

The end of the week of Zeloda was tough--the problem is not being able to eat, with no appetite at all and increasing nausea. Finally used some nausea pills but they sure don't create an appetite. So I had hoped for the relief of the week off--but so far it is disappointing. Monday passed without a hint of appetite, Tuesday has begun the same way. I do feel better, of course, without the Zeloda taking its twice a day toll. I have been bothered by some abdominal cramping which is nothing new to my GI system but is painful enough to put me down on my back for a few hours until it passes.

At least I am able to be up, to go on errands, and yesterday, to work with DCCC Board members to prepare for the January concerts in the two series. I have removed myself from nearly all of those responsibilities now, but still have to work on finding someone to plan a new series. I knew I needed to mentor someone to do this, but didn't think it would be so soon. My "ten year plan" has been decimated. Life is more day-to-day now.

Saturday, January 2, 2010

A Multitude of Angels

Since my effort to let everyone know my condition and allow them to track my progress, I have had dozens of cards, notes, calls, visits, and--of course--postings expressing concern, wishing me well, and promising prayers. You are angels, all of you. Though this is a very personal battle, knowing that there are all those folks out there who are sharing my journey is reassuring and uplifting. Your presence is felt on a daily basis. Bless you.

Friday, January 1, 2010

Periodic update

This week of chemo has been different the the first series-- I completely crashed on day three of the first go-round; day three and four were good this time. I felt well, ate very well (even worked in another McFry day), and was up and around most of the time. So here we are in day five and I am as limp as a noodle, spent most of the day on the sofa. Still, so far this week, no nausea pills. That is a good thing.

I think a lot of the exhaustion I had been having the previous weeks was related to my blood glucose levels. When discovered, it was in the 300s (100 - 150 is considered normal). Since I have been checking four times a day and controlling it, I never go much above 200, with normal readings first thing in the morning. Another good thing. Just two days of SBs left before I get another week off. I have checks with both my Oncologist and GP a week from today. I feel well cared for.

Note to my Gentle Readers: I am getting a lot more sleep than the posting times in this blog would suggest-- that comes up from the software and is--like--Pacific or something.