Moe's misunderestimations

William Henry Cullen

2012-01-26T23:38:00.000-08:00

One of my paternal great grandfathers was William Henry Cullen.

Here is what is written about him in the Paulding County records:

History of Paulding, Ohio

(The Men who Built the Town 1880-1920)

William H. Cullen: W.H. Cullen was born Feb. 4, 1864, coming to Paulding in 1873. He ran a Dry Goods Store on the S/S of the Square as well as laid out the Cullen's Addition in the north end of town. The early nineties found him a partner in a large insurance agency on South Main Street where the police station now stands. On November 15, 1893, he was elected County Auditor for a term of three years. In June, 1898, he was appointed Village Postmaster for a term of four years, and was reappointed later for three more terms, serving in that office until August 27, 1914. It was during his term of office that we saw the beginning of rural mail service, as well as delivery of mail to the homes of the town. For years, with the aid of his son Seth, he operated the Armory Garage where he sold Dodge Automobiles. Here he also started the Paulding-Ft. Wayne Bus Line. It made two round trips a day to Ft. Wayne by the way of Payne and Antwerp. While postmaster, he built the Cullen Block at 100 E. Jackson Street as a rental investment. He died in 1955 at the ripe old age of ninety-two years.

And this fills out a bit of his early history as well:

Historical Atlas of Paulding County, Ohio 1892

W. H. Cullen. - Prominent among the businessmen of Paulding County is W. H. Cullen, of the firm of Cullen, Richards & Savercool, agents for various life and fire insurance companies. Mr. Cullen is the son of Seth and Susan (Perrin) Cullen, and was born on the 4'th of February, 1864, at Napoleon, Henry County, Ohio. The father is a native of England, and the mother of Nova Scotia. The subject of this sketch was reared in his native town, and there attended the common schools, acquiring an education. From his earliest years he developed qualities of accuracy and promptness, which inspired him to make the choice of a strictly business-like vocation. Accordingly, at the age of thirteen years, his first business experience was found in a dry goods store, where he acted as a clerk until 1888. Feeling in need of a wider scope for his business transactions Mr. Cullen embarked in the insurance business, taking as his partner Mr. James Richards. These gentlemen, who are of the energetic and progressive type, continued the business as the firm of Cullen & Richards until June 1, 1891, at which time, their business having increased to such an extent, it became necessary for them to increase their force, which they did by taking in as a partner E. M. Savercool, making the present firm of Cullen, Richards & Savercool, who represent the following companies: Home, of New York; L. & L. & G., of Liverpool; Royal, of London; Phenix, of Brooklyn; Hartford, of Hartford; Connecticut, of Hartford; AEtna, of Hartford; German American, of New York; California, of San Francisco; Springfield, of Springfield, Mass.; Queen, of Liverpool; German, of Freeport; Niagra, of New York; Traders', of Chicago; Manchester, of Liverpool; Ohio Farmers', of Leroy, Ohio; Travellers' Accident, of Hartford; Standard Accident, of Detroit; and Union Central Life, of Cincinnati, Ohio. They are businessmen of such ability, and, as a result of their integrity and enterprise, are enjoying a lucrative patronage. Mr. Cullen was happily married to Miss Lula Huston, of Paulding, in October 1890, and, with his estimable wife, enjoys a high social rank. Fraternally, our subject is a member of the K. of P., Paulding lodge, No. 270. In his political affiliations he is a republican.

I have my great grandfather's pocket calendar from 1908. It is clear from its appearance and its numerous enclosures, that WH kept this with him for many years:

I've made copies of the many newspaper clippings and various licenses that are interleaved in WH's pocket calendar. First let's start with his driver's licenses. He must have obtained them to drive his buses between Paulding and Fort Wayne, Indiana:

WH was a devoted Republican, as the above history attests. His tenure as the elected Auditor of Paulding County was remembered in the local paper:

WH was first appointed postmaster of Paulding, OH in 1898, when William McKinley was president, and the appointments were quite political. He was quite proud that he was reappointed by Theodore Roosevelt and William Taft, losing the job only after Woodrow Wilson, Democrat, was elected president.

WH Cullen, Postmaster, Paulding, OH June 1, 1913

with his assistants Guy Michael, John Burch, Ed Burch

(to be cont.)

Antwort, part drei

2012-01-26T22:06:00.000-08:00

Three days ago, I received the following from Herr Kirchmeier:

Dear Regina,

this morning I got your letter with the tag of Johann Brandl. Thank you very much. Our database knows 18 WWI-soldiers with his name, 17 are buried in france. We don't know their birthdates and -places.

Mit freundlichen Grüßen

Fritz Kirchmeier
Pressereferent

Volksbund Deutsche Kriegsgräberfürsorge e. V.
Bundesgeschäftsstelle
Pressereferat
Werner-Hilpert-Str. 2
34112 Kassel
Tel.: 05 61 - 70 09 - 1 39
Fax: 05 61 - 70 09 - 2 85

Seventeen soldiers with that name buried in France! How terribly sad. Given those odds, I doubt that Johann Brandl's family will ever be identified. At least his identification has been returned to Germany. I'm watching Downton Abbey these past Sunday nights and am struck by the absolute futility of the First World War. When I hiked in the Languedoc region of France back in 2002, each village we went through had a huge monument to their WW1 dead. The lesson was not, and remains not learned.

Antwort, part zwei

2012-01-11T01:28:00.000-08:00

I had an email from the kind Herr Kirchmeier this morning:

Dear Regina,

I integrated your message in a little article, published in our internet-site.
http://www.volksbund.de/presse/presse-detail0/artikel/kann-jemand-helfen/2738.html

Mit freundlichen Grüßen

Fritz Kirchmeier
Pressereferent

I've tried to post the article, but it doesn't include the photos, so you will have to click on the link. Still, I am flattered to be referenced on a German blog. I have the package with the tag ready to go, just need some time to go to the post office.

Antwort

2012-01-09T01:24:00.000-08:00

I heard back this morning from the Volksbund. Here is what the Herr Kirchmeier had to say:

Dear Regina,

thank you very much for the information about the tag. Please send us the
tag by post. We will try to identificate the soldier. Perhaps we can find
out where he is buried.

May I use your fotos for a little articel in our internet-site?

Mit freundlichen Grüßen

Fritz Kirchmeier
Pressereferent
Volksbund Deutsche Kriegsgräberfürsorge e. V.
Bundesgeschäftsstelle
Pressereferat
Werner-Hilpert-Str. 2
34112 Kassel
Tel.: 05 61 - 70 09 - 1 39
Fax: 05 61 - 70 09 - 2 85

So, of course I emailed back right away and said I would be pleased to let them use the 'fotos' and asked if they would let me know if they found Joh. Brandl's grave or heirs. Now I have to get off my duff and send the tag to them.

What fun!

Updates X Two

2012-01-06T23:26:00.000-08:00

First things first. Here is what I heard back from the German organization that the German Embassy sent me to:

Dear Mrs. Cullen

I confirm your inquiry in which you asked which institution to contact regarding the German “dog tag” in your possession.
Please contact the following institution.
Volksbund Deutsche Kriegsgräberfürsorge (German War Graves Agency), Werner-Hilpert-Straße 2; D-34112 Kassel, http://www.volksbund.de

This Institution is responsible for German soldiers which were killed in both world wars. We hope that we could be of some use in supporting your endeavour.

Yours sincerely
Nicklaus
Captain

So I went to the website and found the form for contacting them by email, but two tries and nothing worked. So if any of you out there can read Deutsche, please let me know how I complete the next chapter of this adventure.

With respect to my "procedure," we showed up promptly at 2:45 and waited for an hour or so before they were ready for us. The attending, Dr. Julka, came in to the operating room and informed me of the risks attendant to the operation. I was most interested in the idea that the stent could displace and end up in my stomach. Dr. Julka said it was more likely where the pressure closing the esophagus comes from the outside vs. an internal blockage but still the risk was only 10% or so. He also said that if they put in the stent, I was going to have to spend the night in the hospital so I could get appropriate pain medication. Then they injected the anesthetic into my IV and I was gone in a flash. Woke up in the recovery bay with my friends, Anne and Diane anxiously waiting. It took a while to really get myself up and going this time. Dr. Saunders, the GI in charge came in and told me that when he inserted the endoscope he discovered the stricture was not as closed as the doctors had observed on Friday, so rather than put a stent in, he instead "dilated to 54 french." That was in my discharge notes and I have no idea what it means exactly. I was still a bit woozy from the anesthetic when he came and spoke to me, so that's the best I can do at present. Anne took me home around 6pm and I went, promptly, to bed and slept rather soundly. Today I had a huge headache, courtesy of the anesthetic and my chest ached but that seems par for the course. I am on soups for the first week or so, we will see if I can eat anything more substantial once the ache goes away.

And, thanks to Bonnie's timely reminder, I got my oncologist to agree to prescribe low dose Naltrexone to me to see if that will do anything to stop tumor growth. It's in the category of can't hurt might help, so we'll see. Nothing like being a guinea pig. But a live one. Thanks Bonnie!

Esophageal Stent to be installed Thursday

2012-01-03T16:37:00.000-08:00

I received a call from the Digestive Diseases Clinic at the University of Washington. The "procedure" (they call it a procedure rather than a surgery, although they need a full operating room to do it in) will be performed by a Dr. Saunders at 2:45 pm Thursday. I hope this goes better than the laryngoplasty last May. It should be done on an outpatient basis but they are reserving a bed for me should anything go awry.

Endoscopy results in

2011-12-30T21:58:00.000-08:00

I had the endoscopy today. I don't have the written report, but the Gastroenterologist told me afterwards that I have a stricture in my esophagus caused by something pressing on it. Probably the tumor. Normal diameter for an adult esophagus is 2-3 cm. At the stricture, the diameter of my esophagus is 1 cm. So at least we have an explanation for the problem. I think that they took some tissue samples to biopsy from the duodenum (the upper part of the intestine that a colonoscopy does not get), but I was still coming out from under the anesthesia, so my memory is somewhat fragmentary. The doctor also discovered that I have a thrush infection in my esophagus. No idea how long it has been lurking there. I am on an antifungal to try to eradicate it.

Most likely will have a stent put in to open up the esophageal stricture next week.

Going home?

2011-12-30T11:03:00.000-08:00

My paternal grandmother, Helen Fauster Cullen, died in 1994. After her death, my parents sent me a number of items from her estate. One of them was a beaded evening bag which her husband, Seth, had sent to her when he was in France, serving with the US Army during World War 1.

Sometime this past year I was going through my dresser and happened upon the purse, which was tucked under some sweaters. I pulled it out, took it out of the plastic dry cleaning bag and discovered my grandfather's dog tags from World War 1 along with the identification tag of a German soldier:

One side reads (I've put "_" where I can't read the lettering):

Joh. Brandl
Untermettenbach.
31.5.93
Ers_.Bat_.bay.10.J.N.
Genes.Kp. No.355
BAY.P.I.R 15. G.V.KP1.
1.K. 1211.NR.39

The other:

BAY.K.J.R.15.G.V.KP.1
1.K.NR.1211 *NR.39
JOH. BRANDL.
UNTERMETTENBACH 31.5.93

I showed this to my friends, Barbara and Joseph, and Joseph remarked that the scoring in the middle of the tags was so they could break the bottom tag off and send it in, while keeping the upper part on the body. The Americans took care of that problem by issuing two tags for each soldier.

I have no family stories that go with Joh. Brandl's tag. It was a huge surprise to find it after all these years. My grandfather, Papa Seth, died when I was 7 or 8, so I never talked with him about these sorts of events. The only story that I have from that time comes from a letter:

When my Great Aunt Bebe (Bernice Cullen Sullivan) died in 1981, I went back to Paulding, Ohio, for the funeral. Aunt Bebe was Seth's only sister, and she lived in the family house, across the alley from my Grandmother. They were very close. I had the opportunity to go through boxes and boxes of photographs, clipped newspaper articles, and letters that had been saved by Bebe's (and Seth's) parents. In the letters, I found a few written by Seth to his mother and father while he was in France during the Great War. My most vivid recollection from the letters is that he wrote about how he rode on the running board on the outside of an ambulance, so he could tell the driver where to go at night. The ambulance could not use its lights because the illumination made it vulnerable to a German attack. I gathered up the letters Seth had written and gave them to my grandmother, thinking she would save them. She did not, and they were gone by the time she died 13 years later.

Seth Cullen (l) and unidentifed friend WW1

I wondered if this tag needed to go home and whether it could be reunited with the family of Joh. Brandl after all these years. I asked my online lawyer friends at Delphi Forums what they thought, and several had good ideas. Scot suggested contacting the German consulate. I discovered that although there had been one in Seattle, it was now closed. So, I emailed the German embassy in Washington, D.C. this week asking what I should do with Joh. Brandl's tag. This is the response I received this morning:

Dear Mrs Cullen,

on behalf of the German Embassy I thank you for your request regarding the identification tag of Mr. Johann Brandl.

I recommend to contact the following government institution:

Military History Research Institute
Zeppelinstraße 127/128

D-14471 Potsdam

Phone : +49 (0)331/9714-0

Fax : +49 (0)331/9714-507

eMail: MGFAeingang@bundeswehr.org

Or visit their website at:http://www.mgfa.de/index_2005.php?lang=en

Best regards

Klaus Schepers
Stabsfeldwebel

Büroleiter MilAttStab

Botschaft der Bundesrepublik Deutschland Washington

2300 M Street, NW, Suite 300

Washington, D.C. 20037

Tel.: 001-202-298-4299

Fax: 001-202-298-4321

E-Mail: mil-100@wash.auswaertiges-amt.de

I've emailed the Military History Research Institute and am awaiting their response.

Going Bovine

2011-12-28T09:24:00.000-08:00

I dislike posting unless I have an answer to the question, but I will make an exception here. For a period of time I have had trouble in keeping food down. It was sporadic and, to me, unpredictable. I would swallow and somewhere along the way it would get stuck. I'd would begin coughing and it would either free the obstruction or bring it back up, and I would swallow again and it would go down. I thought that I was becoming a cow, occasionally chewing her cud. But over time it has become worse and late Sunday night after returning from visiting my kids in Minneapolis for Christmas, I found that I could not keep down even one bite of mashed potatoes and pot roast. It was rather concerning as I had a hearing on Monday and I didn't want to be there light headed, but even Monday I could not keep the banana bread down unless I nibbled it--so not enough time to finish before the hearing began. Same thing during lunch break with a chicken pot pie. So I subsisted for the rest of the day on butter rum Lifesavers.

I emailed my oncologist late Sunday night about this and spoke with my daughter about it after I got out of the hearing. She thinks that the mediastinal tumor may be growing and pressing in on the esophagus. I emailed her thoughts to Dr. Martins, and he responded Monday evening that he agreed with Sarah and will be scheduling a endoscopy asap. If this proves out, I will have a stent inserted into my esophagus to open it up. In the meantime, I will dine on soups and smoothies and try to chew my cud contentedly.

Checkup Time

2011-12-19T00:40:00.000-08:00

I saw my oncologist last Thursday. Man, I hate those 7am appointments for a blood draw! All these years and I am still not a morning person. But the news was pretty good. The abscessed lesion on my back that was removed earlier this month, was not cancer. Hooray! Just some other skin disorder. My blood counts were normal in every particular and despite my grumbling about the swollen node in my neck, Dr. Martins doesn't think it has grown any. So there you are. He says I have an indolent tumor. Happy to have that. Let's hope it goes to sleep. For a long time.

And if you haven't seen this ted.com presentation, please check it out. Color coding for cancer surgery. It's 16 minutes but well worth your while. Among other things, you will learn why surgeries are scheduled so darn early. And I thought lawyers were the hidebound traditionalists!

Off to Minneapolis this Friday for a quick holiday visit with my children. Season's best wishes to all of you!

In Minneapolis

2011-12-04T12:55:00.000-08:00

at a Minnesota Wild game with Seth and Angie.

Cannot resist.

2011-12-03T16:45:00.000-08:00

Regina and Claude Frederick Holst's wedding/honeymoon diary

2011-11-30T00:54:00.000-08:00

My maternal grandparents, Regina and Claude Frederick Holst, were married on June 19, 1920. He was 46, she was 24. If you may recall, they met when Regina was the director of nursing at St. Gabriel's Hospital in Little Falls, MN and Dr. Fred ( who I will refer to as Claude hereafter) was a physician there. I will let my grandmother take up the story from a typed two page memoir that I had in my files but had forgotten about. As this was written many years after the wedding there are some discrepancies with names, which is to be expected. The parentheses are Regina's, the brackets are my editorial comments.

"In 1918 I felt the nursing school was well established and some of the sisters could relieve me. I felt it was my duty to join the Navy and give my help to Uncle Sam. Regina White R.N. was director of Nurses in Milwaukee so I enlisted with her. While waiting for my call I accepted a position with the Milwaukee health dept. and was assigned the East Milwaukee District as inspector of Schools. It was at that time the Flu (Asian) became epidemic and I became very ill and had to give up my work for a time. Peace was declared on Nov. 11th 1918 before I received a call to the Navy.

In the meantime Sr. M. Rose who was administrator of St. Francis Hospital in Breckenridge Minnesota, urged me to go to the Breckenridge Hospital and do the same work to accredidate the Hosp. as I did in Little Falls at a salary of $100.00 and room and board. I accepted for one year only as I already had planned on getting married in June.

Foxhome Tornado in late May delayed our plans. The storm came with fury just at supper time and word came that I, with as many nurses as could be spared, should be ready to leave at once for the stricken ones. A special train was being run for us to take us to Foxhome. The train was blown off the railroad tack and many passengers were injured lying in a pool of water.

We gave them temporary first aid until we could transfer them to St. Francis Hospital. There we gave them care, cleaning and drying their wounds in the short time alloted. Telephone calls and telegraphs kept Sr. Eliz. and me very busy. Our only casualty was the mail clerk on the train--he was badly injured.

The Doctors and Sisters worked all night giving first aid until morning. Now our hospital was overcrowded and we had to put two and three children in one bed. The sisters offered their beds and worked all night and the following day. As was to be expected there was much confusion and shortage of workers. Sr. Elizabeth came to me and said, "You wouldn't think of leaving us now would you?" She said to me, "If you will stay until June 15th we will serve you a lovely wedding breakfast." I agreed to stay and help them thru the crises.

We were married June 19th at 7A.M. by Father Lambert Haugh at Breckenridge. Matt (Werner) [Regina's brother] and Marion (Holst )[Dr. Fred's niece--eventually to be Marion Nellermoe] were our attendants. After the service we were served a beautiful wedding breakfast by Katherine Haiebl the housekeeper.

A beautiful day and we arrived in Little Falls by 6 o'clock. Arloine (Uncle Burton's wife and Marion's mother) welcomed us with a chicken dinner. She had roasters still at the Freedham farms. Cecil Beattie and Marion Holst gave us a charivari that could be heard for blocks."

I do not have a wedding picture of them, but I have their joint, handwritten diary of the wedding and their ten day honeymoon which they spent touring the upper midwest in their car named James. It must have been quite the adventure given the state of cars and roads at the time.

Here is a scan of the first page, which gives you some idea of how small their handwriting is and how difficult a doctor's handwriting is to read even from 90 years ago when good handwriting was taught and valued. Regina begins the page, but Claude starts writing about halfway down:

Here is the transcribed diary as I and my friend Anne (many thanks, Anne!) have been able to decipher it.

Regina: “June 19 [1920] Left St. Francis at 6:25 for church. Mass over at 7:00. Called at the parsonage for a very good reason.

Left Father Haupt’s parsonage at 7:15 as (our) breakfast was scheduled for 7:20. Breakfast at 7:30. Served Russian fashion, with piano and vocal solo.”

Claude: “Breakfast table was very beautiful and the breakfast was the best we ever had.

Took a few Kodaks at the hospital and then we went on our way. Brides maid and best man accompanying us + they were very jolly company. First town Foxhall, next Fergus Falls, where we all changed clothes and bought lunch. Next town Elbow Lake, then Erdohl next Evansville, then Brandon + Matt refused to go further. Then Garfield between this and Alexandria. We ate our lunch and the girls would not sit down on account of army worms. We took a few more Kodaks here, then passed through Alexandria, next Osakis at which place Matt bought some ice cream cones and films which evidently Marion got. Our dears [?] evidently became very well acquainted by this time.

Next place Long Prairie then Pillsbury Lake + Seward Inn. Next Little Falls where we had supper and went over to the house for a few minutes. Cecil Beattie called on us + we were very afraid that we might have other callers before we got away. Arloine gave us a little little shower of rice. Next stop was St. Cloud where we stayed the first night + had breakfast. This was Sunday + we tried to go to church on our way, first at St. Cloud then at Hurlie [?] Church + then Monticello when we passed through small burgs to Anoka then Osseo + Minneapolis at which place we stop[p]ed at the Andrews Hotel + had a very pleasant room.

Matt call[ed] on us that morning + we took him to lunch with us + then down to the depot. Later we went to the movies. Next day we shopped all fore noon. Called at Morcomb sorority house but did not find Lois in. We took the river road to St. Paul where we got some gas and proceeded to Rosemount Farmington via Castle Rock + Northfield at which place we had a bum supper then to Faribault Medford + was getting dark so we pulled into Owatonna [a] beautiful town + nice Hotel. Had a thunderstorm that night almost frightened Regina to death.

6/22/20. Next morning we were gently aroused by knock at door so we got up + had an early breakfast. Next Claremount, Dodge Center, Casson, Byron + Rochester at which place we had dinner. Rather bum. Bought some postals and souvenirs. Saw the Hospital Wm Mayo’s Residence + Chas Mayo’s Hereford farm. Sent my wife for souvenirs.

Left Rochester at ‘3 P.M. Then for Hayfield + then Blooming Prairie then Geneva, Clarksville + Albert Lea. Drove around city. Visited hospital to see Miss Kepper but she was on her vacation. Drove around Lake scenery exquisite + stopped at Albert Hotel. This was the prettiest town thus far on our trip."

Regina: "Hotel accommodations good and very reasonable.

6/23/20 Left Albert Lea at 10:00 a.m. and following the Jefferson Hiway South passed thru Glenville and Mortonsville. Roads became bum on the J.H.[Jefferson Hiway] all tourists d----[ed note: I wonder if Regina was cursing here?]the Jefferson. Northwood next, Kensett, Manley, Mason City (First pretty spot we saw in our travels thru Iowa.) Stopped at Mason City to send cards and have refreshments. Next Rockwell, Scheffield, Chapan, Hampton (where we saw a nice nursery) Iowa Falls where we debated of stopping or going on. Went on to Hubbard (no hotel) Zearing (worse) Colo same and next Nevada at which place we inquired for room and lodging. As the hotel was crowded and bum my husband refused to stop and went on to Ames.

Ames was our most pleasant stop to date. The room a corner room with bath was a beauty. The twin beds were white enamel as also the furniture. Rugs draperies and comforts were blue wallpaper, blue bird with white ceiling. Hotel was the most richly furnished of any we had visited."

Claude: "6/24/20 Visited the University grounds and left Ames at 12 am [sic]. First town Mullvale then Huxley, Des Moines at which place we took some Kodaks. Then Prairie City, Fairmont, Monroe, Otley, Pella and Oskaloosa. At which place we stopped over night. Went to the movies. Saw Where Doctor drogery[?]. Hotel accommodations were bum.

6/25/20 Left for Eddyville thru Albia Moravia + Centerville at which place saw lot of coal mines.

Then stayed Unionville at which place we stayed over night. Our impression of Missouri is not favorable. Very many rambling roses."

Regina: "Staples house where we stayed was a typical old Southern house large and roomy but without all of our modern conveniences. The Proprietor and his wife were very hospitable people and also their daughter Mary. For the first time during our married life we rose at 7:00 am and had breakfast at 8:00.

6/26/20 Left Unionville hotel at 9:00 a.m. and when we called at the garage for the car, it was not there. The mechanics were giving him exercise evidently. When James came back the speedometer showed an additional 10 miles. We were charged $4.00 to have the oil cup screwed down and for the use of James. We spoke to the proprietor to have the matter adjusted but without result. We left Unionville (mad). Following the Highland trail we reached Green City and Greencastle. Here "[there seems to be a page missing in the diary]

Claude: "County line Libertyville, Fairfield, Pleasant [Plain], Brighton, Washington, Answorth, Muscatine and then Davenport at which place we stopped for the night at Blackhawk Hotel. The best room we have had. Saw lots of very nice territory to day + Lots of quail. All pretty tired to night. Tried to buy some cherries but could not get any so we swiped a few + finally found a lady that gave us some. But this day we had some trouble. Had a puncture at Fairfield. Then lost my pencil at a school House."

Regina: "6/28/20 Left We had a thunderstorm at Davenport and the next morning we started out in Iowa mud. My husband refused to put on chains but was finally compelled to do so on a muddy hill, when the car refused to go any further. With chains James acted some better and about 3:00 o'clock P.M. we reached Moquoketa where we stopped for the night. We saw “The Country Cousin” which we enjoyed very much. Hotel accommodations were fair.

6/29/20 Left early for Dubuque and East Dubuque. Paid 35c toll. The first time of our travels. Passed over some hilly country into Sinsinaw, where we saw Lill’s [Regina’s sister's] college. From here we drove to Hazel Green where we stopped for luncheon. Our first meal in Wis.

We passed thru Cuba, Belmont, Kodatz, Mineral Point, and Dodgeville. Stopped at Dodgeville to see the Hospital and the Sisters. We were treated royally here and had some very large strawberries with a little lunch which Sr. Benedicta prepared. With Miss Bach added to our party we left for Madison, where we stayed for the night. As Miss Bach’s train did not leave until the following morn we urged her to stay over with us.

We went to a movie and saw ‘Houdini’ and his wonderful feats. Had dinner after the movie and walked around the Capitol. Miss Bach left early the next morning for Dodgeville without wakening us.

6/30/20 Left Madison at 11:00 A.M. and had dinner at Portage. Reached Kilbourns at 3:30 and had just 5 minutes time to buy our excursion tickets and reach the boat to take a trip through the Famous Dells of Wisconsin. The Dells were simply beautiful. Wanted to take some snapshots but forgot our Kodak when we rushed to the boat, so we bought a few at ‘Bennets’. We returned from our trip thru the Dells at 6:30 and had dinner at 7:30. Listened to three pieces of concert and then went to a movie. This was the worst movie we had met."

And there the diary ends.

Claude Frederick Holst in World War 1.

Matthias Werner

Regina Werner graduation from nursing school

Child Interest Club, Little Falls MN Jan. 1938
Front row: Cora Longley, Grace Woodsworth, Regina Holst, Helen Gillespie, Alma Lovdahl, Minnie Moeglein
Back row: Sally Musser, Bess Sylvester, Gene Brick, Bonnie Rossberg, Pearl Taylor, Haatvedt, Ella Vasaly, Clara Thompson, Irene Simonet, Gladys Ryan

Happy Turkey Day

2011-11-22T14:44:00.000-08:00

I am off to fly to Minneapolis to spend my first Thanksgiving outside Seattle in 30 years! I will be with my 3 children. I hope your Thanksgiving is filling and restful and I will talk with you when I return.

New Directions

2011-11-17T14:32:00.000-08:00

I had my weekly appointment at Seattle Cancer Care today. The pathology results from the biopsy of the growth that was removed from my scalp indicated it was cancer. Same kind as found in my lungs. So my oncologist recommended that I terminate the Gemzar chemotherapy, because the tumor had grown while I was on it. And the nodule in my neck had also increased in size.

What this means, is that I am now without a safety net. There are no more chemotherapy drugs that could conceivably be of benefit to me and there are no other clinical trials that seem to be applicable. So, I will continue to see my oncologist every three weeks and as issues arise we will deal with them. Thus far, although steady, the cancer has been slow growing. I hope that will continue to be the case.

A Question of Balance

2011-11-15T23:59:00.000-08:00

My present chemotherapy involves a drug named Gemcitabine or Gemzar. As I've mentioned before, the side effects of this drug manifest two days after chemo and they consist of feeling like I have a very bad flu. Lately what has happened is that I sleep for two days, Saturday and Sunday, and get nothing accomplished on the weekends. And for the rest of the week I am more fatigued than I have been previously. I suppose losing 2/7ths of one's week is okay, as long as the treatment is extending my life. But truly do I want an extended life if the quality is severely degraded? Or another formulation of the question is how much quality of life am I willing to lose to keep living?

There's no decision required immediately, and if the chemotherapy stops working, i.e. the tumors start to grow in size again, it will be moot. But this is like touching a live wire, it's so loaded with emotion. We'll have to see.

In Which I do not win the Lottery, Again

2011-11-10T19:32:00.000-08:00

The test results from Denver are back. And I have no identifiable genetic mutations. The good news out of this is that at least I won't be conflicted by being unable to afford to go to a clinical trial being held at another cancer center far from Seattle. The bad news is, well, there's just no answers.

Yet.

Reporting back from the Operation

2011-11-08T21:09:00.000-08:00

Everything went well for Monday's surgery, except the timing. We reported promptly at 2:15 but the operation did not take place until 7:15. That was a lot of waiting on an empty stomach (I had to cease eating by midnight and all clear liquids by 10am). So I was a bit grumpy by the time the anesthesiologists finally showed up. However, they didn't put me out under general anesthetic, but instead used a lighter anesthetic that they typically employ during colonoscopies (dare we say propofol?). So one minute I was joking with the operating staff and the next moment I was waking up post surgery at 8:30 pm. I was home by 9:15 and friends Anne and Diane kept me company while I ate some wonderful Thai takeout (thank you Anne!).

Other news was the lump on my neck that has recently arisen to perturb me is over my jugular vein, so a potential "two for one" excision had to be scotched. And the oncological surgeon said there was a likelihood that more lumps might show up in the future. Just like whack a mole!!

Got up this morning and prepped a case and participated in a hearing in the afternoon. Had to wear a hat to the office because I'm can't shampoo my head until tomorrow. As a result, when I pulled off the white stocking cap and bandage from my head this morning, I could see that it was going to be a very bad hair day for me. Luckily my vanity has been shredded over the past two years. Hopefully, tomorrow will be a better hair day.

Murmuration

2011-11-05T10:16:00.000-07:00

Murmuration from Sophie Windsor Clive on Vimeo.

Surgery moved up to this Monday

2011-11-04T22:16:00.000-07:00

Got to thinking that I didn't want to wait another two weeks to remove the nubbin on my noggin. So I was very pleased when the folks at UW Hospitals readily agreed to schedule my surgery sooner. I will report to the surgical pavilion at 2:15 Monday, November 7. So fingers crossed that all goes well.

Waiting Period

2011-11-01T18:32:00.000-07:00

I've been asked by many if the test results are back from Denver yet, and the answer is no. The tumor slides were finally received there last week and it usually takes 3 weeks for all the tests to be run. So no news on that front yet.

The other news is that I met with an oncological surgeon today and will have the lump on my head removed surgically November 17th. He thinks it is a tumor outgrowth and recommended excising it. Because it's a growth on the scalp, there's less give with that skin, so it will also require the services of a plastic surgeon. I am meeting with him/her this coming Friday. Then after the scalp bump is gone, maybe next month we'll move to the one on my back. Looks like I'll need one of those fascinator hats to cover up the surgical incision site for a while. How about this one?

Update pre-Denver

2011-10-17T16:07:00.000-07:00

Yesterday got up to see Seth and his girlfriend Angie off. They are driving back to the Twin Cities. Had a wonderful, but hectic time with them. I hope I didn't wear them out .

But after they left I took myself to the emergency room at UW. The lump on my back had developed an abscess and was bleeding and expelling pus, so I called my Dr. daughter and she told me to be seen. So I did. The ER doctor lanced the abscess and irrigated it then packed the wound in gauze and sent me home. No idea if it is a tumor or a cyst now. Maybe a biopsy can eventually be done on the remnant. I do have a meeting with an oncological surgeon for Nov. 1 to do just that. But sometimes things get away from you.

Then today was my ct scans. While drinking the ct contrast agent (which takes an hour), I did a deposition by telephone. A great way to pass the time. Far better than sitting around focusing on how bad the drink tastes. Afterwards, went up to Dr. Martins' office and two nurses, Karen and Heather repacked my wound. This time without lidocaine. Ouch.

But just to balance things out, the ct scan results indicate that the tumors are stable or shrinking a bit. So there's a bit of celebration before heading off to Denver this evening.

More later.

No chemo this week

2011-10-11T11:55:00.000-07:00

I showed up at the appointed time yesterday but the blood tests showed that my white cell count was below the required level, so chemo was terminated. Frankly, I was relieved because the side effects of the Gemzar are not much fun.

This is the fifth type of treatment I've undergone for my lung cancer. The hope is not for a cure, but for either stopping progression or tumor shrinkage. However, with each type of treatment, the odds for improvement diminish as the cancer becomes resistant to treatment. Several weeks ago, my daughter expressed concern for continuing treatment if there were no good results. Essentially I would be enduring the side effects of chemo for no payoff.

We won't know if the treatment has any effect until I have ct scans on the 17th of October. I am already steeling myself for the probable bad news, given the odds. I emailed some friends to let them know that this might be the end of the road as far as treatment goes. But, I am blessed with friends who will not take no for an answer.

My friend, Mary Pat--we were roommates back in 1978 before she went to graduate school in Chicago--is the Administrator of Clinical Research at the University of Colorado Hospital in Denver. Denver was a center for TB patients back in the last century when it was thought that breathing cold dry air in the mountains was one way to treat tuberculosis. And over the years this part of the country has become one of the leading centers in the treatment of lung diseases. One of the doctors that Mary Pat works with is Dr. Ross Camidge, a noted authority on crizotinib and the ALK rearrangement in NSCLC tumors. She made an appointment to see him for a second opinion on October 18th. Perhaps there are some clinical trials that he is overseeing that may be applicable to my situation. So, I will be flying to Denver the evening of October 17th to see if there isn't a trick or two left in the grab bag. My oncologist knows Dr. Camidge and is very supportive of this plan.

Many, many thanks to Mary Pat for her help and friendship. Fingers crossed.

Operation Smile

2011-09-26T20:57:00.000-07:00

I thought this was a wonderful video of a charity that does a great deal of good in the world.

P.S. Had a great time in Eugene. Saw two superior concerts. I had to work for an hour and a half to get a ticket to the Saturday night show because it was sold out. Some very nice woman from Portland sold me one of her tickets. Thank you Ms. Satterly! I am sure that had my children seen me, they would have been embarrassed beyond belief to see me in the parking lot with my hand in the air. But it was way worth it. We think we saw Bill Walton there.

The young man who played lead guitar for Furthur (John K, formerly of the Dark Star Orchestra) can really play, and his voice is better than Jerry's. (sorry Jerry, I still love you though). It lets Phil and Bob relax and do their jobs, although Bob's vocal range is lower these days. But Phil has become a much better singer than he was, and the backup singers and drummer and organist were first rate.

Sunday we visited a boutique distillery, 4 Spirits, in Corvallis, OR. Right now, it's just getting off the ground, but the young owner is producing vodka with two labels: WebFoot Vodka and Slap Tail Vodka. Of course, they are tongue in cheek labels for the Univ. of Oregon and Oregon State crowd, but I am looking forward to trying them.

Off to Eugene for the weekend

2011-09-23T09:01:00.000-07:00

I'm feeling like the last episode of "Freaks and Geeks" today because I am going with friends to Eugene to see two Furthur* concerts:

But it's a return to my misspent youth and a chance to get out of town. Have a great weekend!

*Furthur was the name of Ken Kesey's bus.

New Word Wednesday

2011-09-21T23:43:00.000-07:00

Our new word for today is hemoptysis. Hemo, of course, is the Greek root for blood. Ptysis also comes from the Greek-- ptyalon, meaning sputum, saliva. So, that's what I was doing at 2:30 am this morning when I woke up to a coughing jag. Fortunately the amount was small, so not to worry. However, if the trend continues, then we start to get concerned.

Dr. West had a good comment about hemoptysis on a thread in Cancer Grace:

Hemoptysis is most typically caused by a tumor invading a nearby blood vessel that is also near a branch of the bronchial tree. It may also be from a blood vessel that is part of the cancer eroding. If it's a large volume, it can be life-threatening or even fatal, though that is fortunately quite unusual, especially compared with just a minor tinging of blood in sputum of someone with cancer, which is pretty common. Still it's always worth being in good communication with a person's medical team about this symptom, how mild or severe it is, and whether it's getting worse, better, or just stable. And "anti-angiogenic" targeted therapies like Avastin (bevacizumab) and some others in that class can be associated with worsening of hemoptysis that more often becomes quite worrisome in its severity, so these agents are highly recommended to be avoided in people who have a history of anything more than slight hemoptysis.

Gemzar has a slight incidence of hemoptysis in patients--about 2% from what I could read on the internet. So, will continue to monitor for now.

Progress Report

2011-09-20T00:21:00.000-07:00

Mondays are the new chemo days. At the meeting with Dr. Martins there was some bad news and some good news. And some weird, unresolved news.

Let's start with the bad news since it has to do with the YouTube video posted. It was a big hit my last year of law school. You should play it while reading this post. Anyway, Dr. Martins could hear, for the first time, with his stethoscope, the burbling in my lungs that I have been hearing at night when I lie down. It's in my lower left lung and probably due to secretions as a result of the tumors. Pleural effusions can only be seen radiographically so that will wait until the next CT scans in October. So I am certified as having my own "squeezebox." I also have several small, painful hard growths on my scalp that Dr. Martins thinks may be skin cancer. We will watch them to see if they grow larger. Just think, I too, can be like a mistranslated Moses!

The good news is that the small swelling on my back between my 6th and 7th (or was that 7th and 8th) mid line vertebrae does not appear to be malignant. At least it is softer to touch than most lung cancer tumors. And the swelling in my lymph node on my neck has decreased somewhat.

Now for the weird news. I've been in contact through http://www.cancergrace.org/ with a fellow who lives outside of Atlanta. He wrote me this summer asking about the MDX 1105 trial and I was enthusiastic in my response. He enrolled in it at Emory in Atlanta the end of July, and last week sent me an email asking how it was going for me. I replied, telling him I was off the trial, and he sent a sympathetic response. In it he told me that when he signed the consent form there was a provision for randomly receiving either 1mg per kg of body weight, 3 mg per kg of body weight, or 10mg per kg of body weight. You were not told what dosage you would be given when you signed the form. But when he went to received his first infusion, he was told that the clinical trial protocol had changed and all patients were being given 3 mg per kg of body weight. This was this past summer while I was still on the trial. And I was never informed that the protocol had changed. I was receiving 1mg per kg of body weight. I received this email this morning, right before my appointment with Dr. Martins, so you can believe it was the first topic I raised with him. Both he and the clinical trial manager had never heard of such a thing. They thought that perhaps the fellow at Emory was in the MDX 1106 trial but I've received 6 emails from him all with MDX 1105 in the title.

So, I took the little guys to Greenlake for a swim and a walk to deal with it.

Roger Ebert reviews 50/50

2011-09-19T23:39:00.000-07:00

http://blogs.suntimes.com/ebert/2011/09/films_that_are_not_for_the_dyi.html

My review is contained in the comments to his review.

I hope many folks see it.

Wiener Parade September 18, 2011

2011-09-19T07:44:00.001-07:00

Going Home

2011-09-17T10:23:00.000-07:00

Thanks to Alex who posted the second video first! But this is the whole story:

A wonderful story for a Saturday.

Elephants never forget. And bless those in Tennessee who have created such a fabulous sanctuary.

P.S.: The epilogue

Gemzar wins the toss

2011-09-15T22:34:00.000-07:00

Monday I went into Seattle Cancer Care at 7 am for blood work and 8 am to meet with Dr. Martins. He recommended going ahead with the Gemzar and I agreed. So, I was back at SCCA at 3:30 for the infusion, which lasted about an hour and a half. I was given steroids to help my body accept the Gemzar (as had been done with earlier chemotherapy drugs) and it powered me along nicely for two days, but today things crashed big time. I'm not sure if it's the reaction to tapering from the steroids or catching a cold (which is again a possibility since this type of treatment causes the blood cells to diminish), but I spent the day at home, mainly sleeping.

I have a new growth near the lymph node on my left neck where a prior metastatic node was taken out back in 2010--it's probably a malignant regrowth. If the chemo doesn't decrease the size, we'll look at radiation. It's painful and makes it difficult to wear a seat belt in the car because of its position. I also have several other growths on my head and on my back. The ones on my head are small, hard and painful to the touch. The one on my back doesn't have any sensation to it. This is a strange place to be, patrolling my body for unexplained bumps. I'd much prefer to be utterly clueless about it all.

A friend from work put me in touch with a cousin of hers who is in pharmaceutical research back east and she explained that the clinical trial that I participated in was a phase I trial, where they are still trying to establish the dosage to be used in treatment, so a petition for compassionate use would not be in order at this point.

Still, I have beaten the odds. Sunday marks the date I was informed I had cancer back in 2009. I plan to celebrate by participating in another dachshund walk at Greenlake. You are welcome to join me!

Putting it back into perspective

2011-09-11T23:27:00.000-07:00

Thank you, Shelley, for this. You were right. I was in tears by the end.

Anniversaries Ass Backwards

2011-09-11T01:23:00.000-07:00

Today is the tenth anniversary of the 9/11 attacks. I've been reading about the reminiscences and memorial events for at least the past two weeks, and have even posted elsewhere about what I was doing at the time and my reactions. But what I haven't said was crystallized for me by another participant in a http://www.cancergrace.org/ fora earlier this week. She noted that living with advanced cancer she sometimes wonders if a given anniversary will not be the tenth or the twentieth, but perhaps the last. That's a feeling that I can deeply identify with.

I've been lucky in so far as I've outlived the median life expectancy for someone diagnosed with Stage IIIB non small cell carcinoma. It will be two years since the diagnosis on September 18, 2009. Median life expectancy is somewhere between 13 to 18 or 21 months depending on which expert you consult. I've been able to witness certain milestones such as my daughter graduating from medical school, but with the ending of the 4th line treatment and moving to yet another chemotherapy that simply kills fast growing cells generally rather than specifically target my particular type of cancer, I'm uncertain how much longer the luck will hold out. It's not that there is such a treatment at this point, but my cancer seems to overcome the killing fast growing cells types of therapy rather handily.

Perhaps my children will never marry or have kids of their own, but I expect that to be the exception rather than the rule. I'd like to be around to be a part of it. Life isn't fair, as I used to tell them ten years ago when they were younger and I thought I knew better. But I no longer can employe selective amnesia concerning the fact of my own mortality, as I used to with such facility. It doesn't have the stark immediacy of what those in the towers faced on 9/11 but it grinds on inexorably. The trick is not to count the moments, whether backwards or forward, but to experience them for what they offer in and of themselves.

So I don't think I will be going to any anniversary commemorations later today. I'm just not in the mood.

That was a Quick Ride

2011-09-07T17:01:00.000-07:00

Dr. Martins called about a half hour ago. The chinical trial radiologist reconsidered and agreed that there was too much progression. So I am off the clinical trial.

The current options so far are:

1) whether the clinical trial would permit me to continue using MDX1105 outside the trial for humanitarian reasons (any lawyers out there know about these sorts of appeals?).

2) using Gemcitabine (Gemzar). Not shown to be very efficacious in late chemo settings.

3) using Sunitinib. This would be an off label use and there is a question whether the insurance company would pay for this as a result.

So.

The options are not so good. We shall see.

Strap on your Seatbelts

2011-09-06T22:59:00.000-07:00

We are in for another ride on the rollercoaster.

Dr. Martins was very chipper this morning. It turns out that the clinical trial back east has their own radiologist who does an independent read of the ct scans, rather than automatically accept the read of the Seattle Cancer Care radiologist. This time around, the clinical trial radiologist opined that he thought my scans showed stable results (Dr. Martins has no idea if he read the part about the kidney lesion).

So Dr. Martins has a call into the radiologist to make sure that he is certain about this, but fingers crossed, it looks like I still may be in the clinical trial. Will find out Thurs. Dr. Martins thinks as I do, that the clinical trial, at the very least, has slowed the progression of the disease. I'm past the median life expectancy (13-18 months) and I'm still in pretty great shape--no pleural effusions, no spikes in the blood tests, no physical evidence of brain metasteses. All except for the hypothyroidism which could be due to age.

So we have at least this little window of hope.

Thanks for all your notes and emails. They were and are appreciated.

CT scan results not good

2011-09-02T16:07:00.000-07:00

I had my ct scan this morning. Dr. Martins emailed me the results this afternoon with the comment that they 'don't look good.' I am assuming that I am off the clinical trial.

* Preliminary Report *
~Examination:

CT chest, abdomen and pelvis with IV contrast.
Indication:
Non-small cell lung cancer. Restaging.
Technique:
CTB A15 Chest Abdomen Pelvis
Type of scan: Single phase spiral
Superior Extent: Lung apex
Inferior Extent: Ischial tuberosities
IV Contrast: Positive
Reformats: Coronal
Automated exposure control and statistical iterative reconstruction techniques substantially lowered patient radiation dose.
Comments: None

Comparison:
July 25, 2011

Findings:

Chest: Supraclavicular region: The necrotic left supraclavicular lymph node is essentially stable in size. It measures 2.4 x 2.5 cm (4/6)
previously measured 2.3 x 2.6 cm
Mediastinum: The necrotic conglomerate of lymph nodes in the AP window is not significantly changed in size. It measures 3.7 x 3.9 cm (4/28). Previously it measured 3.7 x 3.9 cm. Again the necrotic mass is encasing the left pulmonary artery.
New since the prior exam is significant left hilar adenopathy. The largest conglomerate of lymph nodes measures 1.8 x 2.3 cm (3/62)
Lungs: Multiple pulmonary nodules are again noted. All of the nodules are either stable or increased in size. New nodule is seen in the left lower lobe adjacent to the fissure and measures 4 mm in size (3/63).

Representative measurements are listed below.
The soft tissue density in the left lower lobe measures 2. 8 x 2.9 cm (3/85) is not significantly changed since prior.
Left upper lobe nodule measures 1 cm. (3/69) this previously measured 0.9 cm.
Right upper lobe nodule today measures 3 mm (3/24) previously measured 2 mm.
Right middle lobe nodule today measures 3 mm, (3/36) which is stable from prior.

Pleura: Normal
Heart: Normal
Abdomen:
Liver: Rounded hypodensity seen in segment 4B is stable from the prior exam. (4/72) This is too small to be characterized. 2nd
hyperdensity in segment 8 of the liver is also unchanged from prior exam this is too small to be characterized (4/51)
Gallbladder: Cholelithiasis without evidence of cholecystitis.
Bile ducts: Normal
Spleen: Normal
Pancreas: Normal
Adrenal: Normal
Kidney: Round hypodensity in the right kidney measures 9 mm in diameter (4/78), previously measuring 8 mm. Impression there is the
lesion has grown from 6 mm to 8 mm. The lesion measured 2 mm on March of 2011. This rapid interval growth is concerning for a metastatic lesion.
Bowel: Diverticulosis without evidence of diverticulitis
Pelvis:
Bladder: Normal
Uterus/Ovaries the wires cystic mass in the pelvis measures 11 x 13 cm (4/134) this is not significantly changed since prior
Lymph nodes: No retroperitoneal, pelvic or inguinal lymph nodes meet
CT criteria for enlargement.
Ascites: None
Bones: No suspicious focal lytic or blastic lesions
Vasculature: Normal

Impression:

1. Overall appearance of increase disease burden within the chest and mediastinum since the prior study
2. New left hilar adenopathy.
3. Necrotic lymph node conglomerate is stable from prior
4. Multiple pulmonary nodules are either stable or increased, and at least 1 new nodule since the prior exam seen in the left upper lobe
measuring 4 mm in size.
5. Small interval increase in size of the lesion in the right kidney since the most recent study, with a rapid increase in size when
compared to CT scan 6 months prior. This interval growth is concerning for metastatic disease.
6. Two hypodensities within the liver are stable. These lesions are too small to characterize.
7. The left supraclavicular necrotic lymph node is stable in size.
8. The cystic mass in the pelvis is also stable in size

Learning to Live with Limits

2011-08-29T20:44:00.000-07:00

I went for my 3-month check back with the ENT who had done my laryngoplasty at the end of May. I've held back from talking about this because I wanted to wait until the appropriate time had passed and I'd had a follow-up laryngoscopy to confirm it. So I did those this morning. And it's clear now. I am not getting my voice back in any major way. In other words, I am part of the 3% for whom this surgery really didn't work. Oh, there's a bit more fullness of tone, but no real increase in volume and by the end of the day my vocal cords are exhausted from speaking.

Speaking is what I do as an attorney. There's really no way out of it. I'm in a courtroom or in depositions, or on the phone in conferences. All of which require a decent voice to be heard by the judge, the court reporter, the other attorney, and the witnesses. The news was hard to take. Oh, I could have another injection of Radiesse to see if that would temporarily help things, but it would only last at most 6 months. Or, I could try for a second surgical implant. Dr. Merati told me that of those whose surgery does not work out, about half of them choose to do nothing and half decide to go through with a second surgical intervention. There's only one study out there in the medical journals about second surgeries and its findings were that 10% of those who go through the process again, end up worse than they started while about 70-80% do better. Given that I'm already in the 3% category for 'not so good results,' I am thinking that this is it. End of the road on trying to regain my voice.

Despite my daughter's best efforts to cheer me up and try to tell me that it's not that bad, I'm having a hard time dealing with the reality and finality of the situation. I'm sure that I will eventually pick myself up and get on with things, but tonight I'm feeling sorry for myself. Hopefully, this will not last long.

My apologies to all.

Saturday video to enjoy.

2011-08-20T09:06:00.000-07:00

A commercial from Thailand.

Greenlake Wiener Dog Parade

2011-08-14T17:10:00.000-07:00

Boy, did we have some fun this past Saturday at the Greenlake Wiener Dog Parade. You can catch all the photos here. Scooter and Truffle are No. 1 in the lineup, modelling their very chic Macalester College leashes. We had over 30 dachshunds and their doting owners. I have to say I was especially taken with the puppies and also a full sized dachshund named Nicholas, who has the finest confirmation I've ever seen on a dachshund of any size.

The next Greenlake parade is September 18 at 10am. If the weather permits, I would love to have you come with me. You just do not know how fun and chaotic it is to be surrounded by dachshunds of every color and size and temperament!

I am thinking I want to see this movie

2011-07-29T11:29:00.000-07:00

http://www.imdb.com/video/imdb/vi727620889/

I am also thinking I'd like to see what Roger Ebert has to say about it when it comes out. He is one of my heroes.

Quick Update--Still in Clinical Trial

2011-07-28T14:40:00.000-07:00

I spoke with my daughter, the med/peds resident in Minneapolis, last night. She was much more sanguine about the renal lesion and said that they are quite common as non cancerous growths. And, during our conversation, I remembered that the traditional metastatic growth path for lung cancer is lungs, liver, brain bones. Not kidneys.

I met with my oncologist this morning. At first Dr. Martins recommended terminating the clinical trial because there continued to be progression in my tumors' growth. In response I noted what Sarah had told me about renal cysts and that I had an ovarian cyst that seemed to be non cancerous as well. I mentioned the pathway that lung cancer normally takes, and he conceded that kidneys were not part of that. Then, I asked him if it were possible that the progression of my lung cancer could be slowed down by the clinical trial, and might rev up if I go off. He said that that was a possibility. Finally, he said to think about it this way--if in 6 months I felt the same overall as a I do now--would that be a good thing for me? I said yes, I thought it would. So the clinical trial folks were contacted back in New Jersey, and they said it would be a discretionary decision on Dr. Martins' part. Given my discussion with him and my feelings on the matter, he agreed to continue with the clinical trial.

We have nothing really to go on at this point other than my intuition that this is the path to take. But I am willing to take the risk. In addition, the clinical trial manager noted that according to my blood tests from two weeks ago, my thryroid gland has been working in overdrive but not producing the hormone needed. This has been a side effect from the monoclonal antibody in other participants. Today's results confirmed the thyroid imbalance, so I am being prescribed synthroid. One symptom of low hormone production, I was told, is hoarseness. So there is something to consider as a possibile cause of my continuing hoarseness while speaking that might have nothing to do with my surgery two months ago.

So, while I don't know where this is ultimately going, I am feeling much encouraged. And thanks for all your good wishes yesterday both on the blog and privately. They really helped.

Not so good news

2011-07-27T10:52:00.000-07:00

It appears that some tough choices will be made tomorrow. The ct scans essentially showed that the old tumors are either dead or stable, but there is a renal abnormality that my oncologist thinks is of questionable significance but is enough to (a) be a cause of concern about metastasis and (b) probably sufficient to toss me out ot the clinical trial.

Here is the read from the radiologist's report:

Kidney: There is a round hypodensity in the right kidney seen on
image 4/78. It measures 8 mm in diameter, compared to 6 mm in
diameter from the previous study of May 28, 2011. On the study from
March 8, 2011, there is a renal lesion measured 2 mm. There is
progressive growth makes this lesion suspicious for metastatic disease.

I should find out tomorrow about the clinical trial. If I can no longer participate, it is unclear what, if any alternatives remain. This is my fourth line treatment. There are very few options remaining.

Fingers Crossed for July 25th

2011-07-19T23:11:00.000-07:00

My next ct scan is July 25th. Here's hoping that the tumors have not grown so that I can remain in the clinical trial. This article about how easy it is to misread ct scans in estimating tumor sizes is not helping me stay sanguine.

It's been a quiet past few weeks. Even though Seattle has only had 18 hours of 70 degree + weather all summer, it still has been a busy time with gardening added to the mix of things. My backyard is loving the weather no matter the temperature and I've become quite the digger and weeder.

However, came down with a summer cold the end of last weekend, courtesy of my son. When you are teaching small kids how to swim and life guarding at a pool, as he is, it is normal to come into contact with lots of virii, so this is not unexpected. But the severity of the coughing is surprising, and as a result, I've taken a few days from work to recuperate. My voice has been affected as well and it seems I am going backwards rather than forward. Part of the problem is that in order for me to achieve resonance with my new speaking voice, I can no longer speak in low tones--I must raise my pitch up to a girlish cadence. And there is nothing I hate more than sounding like Lisa Simpson. So I am fighting this, and the end result is that my voice continues to resemble Marge Simpson's instead. Not much better, eh?

Something else that I didn't learn until weeks after the thyroplasty is that the scar tissue at the incision site is adhering to the scar tissue from the incision into the windpipe below it. So I have this rather unattractive indent in my neck which makes the skin around it droop even more. Sigh. Any delusions of beauty are gone these days. One of the signal aspects of aging is that you become more and more invisible in society as youth fades. I just wish there was a corresponding rise in being taken seriously. But not with this voice! I'll just have to go Greta Garbo and not say much.

The Blue Walk--on the Riviera in SE France

2011-07-10T00:33:00.000-07:00

I have a dear friend, Carlo, who I used to work with in the AG's office. We did travel fraud cases together. She would put together the arbitration/mediations as part of settling with companies that I sued for violating the Washington Consumer Protection Act and the Travel Sellers' Act. She was very, very good at this. But, unfortunately, both of us eventually went our separate ways and she is now based in San Diego with her own travel agency. One thing that she and I shared was a love of things French--in 2002 she found a tour for me where I went to the Languedoc region of the country and spent a week with my friend Mary Pat, hiking the back country, getting lost and finding our way back to where we were to meet our taxi by the end of the day and eating good food and drinking good wine. An experience that is worth writing about at some point.

But the point today is that Carlo has a new venture out called The Blue Walk. It is a one week guided or self guided (for a little bit less) tour of the French Riviera from the Italian border to Menton. You are based in a lovely 3 star hotel in Nice and travel out each day to a new site to hike and enjoy all that the area has to offer. And if you are like me, and can't read a map very well, you would probably enjoy the guided tour, since you don't have to worry about getting lost. In addition it comes with a 7 day French rail pass, so you can walk as much or as little as you want at the various stops--typically 3 hours a day, In the sun, next to the Mediterranean. With all that great French food and wine. What could be better? There are two hikes in September that have openings, if any of you are interested. I can highly recommend Carlo as a wonderful and entertaining guide and host.

I hope to go next fall and if there are any of you who would like to go with me then, please let me know and we can make plans. But do, please, check it out. It is a memorable vacation.

http://cruisetourtravel.com/the_blue_walk

Cancer Grace and a new paradigm for cancer treatment

2011-06-30T22:18:00.000-07:00

Dr. Jack West, oncologist at Swedish Medical Center in Seattle, has a wonderful Ted.com broadcast up on YouTube about becoming an educated cancer patient and participating in your own treatment. I urge all of you to take a look:

Off to visit my mother

2011-06-21T23:27:00.000-07:00

I am leaving tomorrow for a 5 day visit to Lexington, KY. Mom is 87 so one never knows when the next visit will occur. Travelling used to be such fun, now it is something to be dreaded. I realize that the government is trying to keep us safe but there has to be a better way to screen for terrorists.

I wish I could say that the surgery has been an unqualified success but my voice, while somewhat better, is still quite faint and raspy. I had a hearing today and at the conclusion I was given leave to file my closing statement in writing rather than try to talk because I had just about exhausted it. Good discipline for paring down my questions, however.

I had an appointment last week with Dr. Merati and his residents and learned that it may take as long as 3 months for the swelling in my vocal cords caused by the operation, to go down. Who knew they were this sensitive? The swelling not only interferes with talking, it makes breathing difficult still, although it is not a spasm, but more of a sustained obstruction when I inhale upon exertion. I am supposed to learn how to breathe better when I next visit the speech therapist, so am hopeful that some of this will resolve with time and better breathing. Imagine that. All these years and I could have been doing it better.

So Bon Voyage and talk with you when I get back!

Science project--why organic.

2011-06-10T11:05:00.000-07:00

Mad props to Nancy Nall for posting this on her must read blog.

I have had so many friends diagnosed with cancer recently, I can't help but wonder about our indirect consumption of chemicals as a catalyst.

It's a Beautiful Day

2011-06-05T16:43:00.000-07:00

Yesterday, June 4, 2011, my daughter, Sarah Alice, graduated from medical school. It was a perfect Seattle summer day--no clouds and the temperature was in the high 70's. On days like this, you forget the previous 6 months of dark and rain and simply live in the moment.

Graduation was at Hec Edmundson Pavilion at 10am and, of course, Sarah had to be there at 8:30, so Matt drove her down and I struggled dress and remember everything. Camera? check. Cell phone? check. Ipod? Check. Flowers? Oops. So after Dan, Sarah's boyfriend, showed up and Matt was ready, we stopped and got purple and yellow roses to give our new doctor after the ceremony.

Raced into Hec Ed, picked up a program, found some seats and opened said program. Discovered that Sarah was not only honored as the ACP Outstanding Internal Medicine Student from Washington state and for her membership in Alpha Omega Alpha, but that she had been conferred the Georgiana Kirby award. Given by the friends of the University of Washington, the Georgiana Kirby award "is awarded to the graduating medical student who has demonstrated outstanding dedication to his or her studies and clinical work, and has shown the compassion for patients that is embodied in the ideal physician." Each of the 267 graduates was called by name and came up to receive their hood and diploma, as their achievements and residencies were announced. I should have had a noisemaker app attached to my IPOD because I could not yet make any sort of sound, other than vigorous clapping when Sarah's name awards and residency was announced and both Dan and Matt were too shy. I thought of all the days I had spent at the sidelines of her soccer games and swim meets, yelling at the top of my lungs, and I guess Sarah was probably grateful for the the temporary loss of voice. Ah, but it used to be so much fun...

Lots of pictures with family and friends outside afterwards. Lots of hugs and some tears. The sun actually started baking us, and Sarah was roasting under her robe, green hood and squashy cap. So she decided that she did not want to go to a restaurant for celebratory brunch, but instead wanted to go to the pool. We went to Metropolitan Markets and picked up picnic lunch fixings, went home and got ready for the pool. Had lunch at home so we could polish off a bottle of champagne and then spent several relaxing hours in the sun with the familiar splashing and other water noises, basking in the sun and talking with friends. Every so often, I'd get a question, "You know what, Mom?" "No, what, Sarah?" "I'm a doctor now!" So everything that she did the rest of the afternoon became anchored to that new fact, including her pickleball and basketball victories. Life does not get much better than this.

About 5:30 we closed up shop because she and Dan had to go out to dinner with her father and his wife. Matt and I had tickets to the U-2 concert at Qwest Field. I'd purchased them a year and a half ago, but the concert was postponed last June because Bono had unexpected back surgery.

The trip downtown was uneventful and we found parking in the International District which meant a brisk walk to Qwest field in the sunshine. Our seats were up in the third level, southeast side, but in the front row. At one point we had an usher come iover and tell us we were in the wrong seats and made us move, but when we got up a level he admitted his mistake and gave them back to us. After that things settled in very nicely. Our seatmates welcomed us back warmly and our neigbors to the south collected everyone's favorite songs so we would know who to cheer and point to when they came on. Matt's was "Sunday Bloody Sunday" and mine was "Better than the Real Thing," which is not part of their canon. Both were played and mine was the first song of the concert! Began well and just got better as the evening wore on. This turned out to be the emotional high point of the evening:

Absolutely one of the peak days of my life.

Three Days Out from thyroplasty (vocal fold surgery)

2011-06-03T13:53:00.000-07:00

Tuesday, May 31, at 5:30 am, my daughter and I were in line at the Surgical Pavilion at the University of Washington. Check in went quickly but I was pretty tired because when the nurse asked what kind of surgery I was going to have, I responded "thoracotomy" rather than "thyroplasty." Sarah will never let me live that one down. Sarah went with me to pre-op where I donned yet another flattering hospital gown. The anesthesiologists came by to chat and install an iv line on the top of my left hand. One of them told me an anesthesiologist joke: How can you hide $100 from an anesthesiologist? Hide it anywhere in the hospital after 3 pm.

At about 7:30 I was wheeled into surgery. It was a room crammed full of monitors, machinery and all sorts of things. I had somehow thought that surgeries were sterile, empty spaces. Not so. I was shifted over to a narrow surgical table and given a donut pillow for my head and a horizontal one under my knees. They draped me for surgery, which consisted of dropping a shower curtain down from the ceiling and sticking it to my chin, so I could only see directly above me. Then they injected the anesthetics to numb my neck so they could cut me open. Two residents did all the grunt work with the incision--they stood close to me to make sure that I could not move during the procedure. It was actually a nicer experience than had they used a straight jacket approach.

Several times I felt whatever it was that they were using to make the incision. To me, it felt like my neck was being sawed with a rotating bendable, wire brush, so I hollered, and they gave me more good drugs. I had to stay awake during the entire procedure, because I had to vocalize so they could make the proper placement of an implant that was just the right size. So what would happen is that they would put in the implant, have me say "eeee" or count to five, or hum, and then take it out and work on adjusting the size and put it back in and work on positioning it. Eventually Dr. Merati stepped in a fine tuned the size, shape and positioning and we were done. The two residents sewed me back up, chatting about the number of weddings they were scheduled to attend this summer, which was a rather interesting experience to actually be the chopped liver at the time!

It turns out that the cartilage in the vocal fold area was extremely soft, making it difficult to size and adapt the implant. There's a system out there that uses pre molded implants, five different sizes, and I had asked Dr. Merati about it before surgery. So in the middle of my surgery he remarks to me, "This is why we can't use the Montgomery process."

If you are really interested, you can see a thyroplasty surgery here. My surgery lasted probably 2 1/2 hours, a bit longer than usual, because of the softened cartilage. Dr. Merati told me in a phone call yesterday that my cartilage was the softest he had ever dealt with, and probably was a function of the radiesse injection a year and a half ago. He sent a piece of the cartilage out for analysis but there was nothing unusual found from the sample.

I spent the night in the hospital and was discharged before noon on Wednesday. Went home and slept most of the day, so I could go to Sarah's medical society honorary dinner at the faculty club that night. It was truly a wonderful experience because before each of the new members were given their certificates, part of their nomination applications (which were written by faculty and peers) were read. Each one of the new members was terribly impressive. I was sitting next to the featured speaker, a pediatric cardiologist from Rochester, NY, and she murmured that she doubted she would have made it these days given the achievements that were noted. Truly a humbling experience.

Along the way, I dropped wearing a gauze bandage over the 3 inch incision--it was too rough. So what if I look like Bride of Frankenstein with those ugly ass black stitches on the front of my neck? Like my father used to say when I was in tears over a botched haircut, "At least I don't have to look at it." Funny how I now rather enjoy that saying, when I used to hate it so much. We'll see how many double takes I get at Sarah's graduation tomorrow.

Yesterday was supposed to be an infusion day--the ct scans showed the tumors either had not grown or were shrinking a small bit, but the clinical trial managers back east decided because of the thyroplasty surgery, that I had to wait for two weeks. I hope that doesn't give the tumors a new lease on life, so to speak.

My current voice is really rough, but that's in part because of the swelling occasioned by the surgery. I'm having a bit of a problem swallowing as well, which I also attribute to edema. But the pain, which was significant the first day, has largely disappeared. I'm just glad I never got that thoracotomy (which is the removal of part of one's lung).

Transition Anxiety

2011-05-27T10:09:00.000-07:00

When my kids were little, I had a number of 'how to' books to help me as I sought answers to child rearing questions and issues. One that I remember well is the problems that babies and toddlers have with transitions. Right after Matt was born in 1990, and I returned to work after my 3 month maternity leave, I was dropping my three kids off at three different places before work: Sarah to kindergarten, Seth to day care in a nearby neighborhood and Matt to a downtown child care facility. It made for a very rushed morning. Sarah's first day of kindergarten was especially memorable because I ran into the car of her after school teacher in the parking lot. At that point, I should have realized that I, too, had trouble with transitions. But it was so much easier to focus on the kids' reactions rather than my own, that I didn't get an inkling of it until high school graduations and college departures arrived.

In recent days, my transition anxiety has blossomed beautifully. Sarah will graduate from medical school on June 4th, and move to the Twin Cities on June 7th to begin her 4 year residency in internal medicine and pediatrics (med/peds). I will miss her. Her compassion, care and medical insight have been integral to my well-being during the past two years. Serendipitously (if there can be such a thing with cancer), my condition has brought us together far more closely than I could have ever dreamed of. She has been, truly, a blessing for me. I am so very fortunate.

So earlier this month, I had a champagne brunch to celebrate her graduation. I invited many of my friends and neighbors who had watched her grow up over the years and could tell Sarah stories. And because it was Kentucky Derby day, I suggested that, if possible, we all wear hats, white gloves optional. It was great fun. Many friends made delicious food for our feast and brought champagne to share. They sprang into action during the brunch and helped serve and open bottles and pour the libations. And some even stayed and helped me clean up. It was a grand time. I thought I would share some of the photos with you. They are not of the best quality (I didn't have the flash on for most of them, argh!) but they do convey the joy. My many friends are also a blessing.

Surgery scheduled

2011-05-23T17:40:00.000-07:00

I saw Dr. Merati, the ENT at UW who will be doing my surgery. The doctors and staff at UW could not have been nicer and when I explained that I wanted to have the surgery before my daughter left for her residency on June 7, they spent the morning pulling out all the stops for me to make it happen. So many, many thanks to them. It is scheduled for May 31st.

As always, there is some caution here. Dr. Merati has done this surgery (the implant is called a 'thyroplasty') over 300 times and he is confident that it will improve my voice significantly. However, my breathing problems are not a standard presentation--something is not making sense in my reporting of the significant breathing difficulties I am having upon exertion because most of the video taken in last week's endoscopy, show the airway fairly unrestricted. So Dr. Merati wants to include a neck scan in my ct scans as well. One thing that could have happened is that the original Radiesse injection could have moved further down into the windpipe. In that case, it would be a nasty surprise because it would entail further surgical procedures, so the ct scan should help to determine if that is a problem.

Dr. Merati was also interested in the fact that at least a year before the cancer was diagnosed, I was having swallowing difficulties and he wants to pin that down a bit better before surgery. So tomorrow at 9:30 am I am back at UW for a swallow test with Ginger. This means no food or liquids (including water!) after midnight. I will have to call upon my early first communion training in the Catholic Church to make it through this privation......

Pre anesthesia on Thursday and a meeting with the speech pathologist on Friday. It's going to be a very busy week. More later.

Infusion May 19, 2011

2011-05-21T09:41:00.000-07:00

My sons went with me to my infusion this past Thursday. As did my friend Diane. We played Scrabble. I, of course, lost again. But Diane and Seth both had 7 letter scores during the contest which Diane eventually won by 3. A good time was had by all.

Happiness is

2011-05-19T22:22:00.000-07:00

Two days of sunshine in a row;

My son Seth home for a week;

Dinner with all three kids, my brother Mark, his partner John and John's father, Steve;

Getting a fund raising pamphlet from my alma mater, Macalester College, and realizing that my son is in the featured photograph on the back/mailing page:

Medical update May 16, 2011

2011-05-16T20:05:00.000-07:00

A few weeks ago, I noticed that when I was falling asleep, I would whistle. I, of course, assumed it was a wheezing in the lungs, In addition, my voice quality took a turn for the worse and then I started becoming breathless upon even minor exertion. So, based on my complaints, two weeks were spent with first Sarah checking my lungs with her stethoscope and pronouncing them fine and then Jeanette, the physician's assistant in the clinical trial, doing the same. For a while I though I was losing my mind, or becoming a hypochondriac, but Friday morning, May 6, I woke up and my first thought was, "It's the vocal cords!" Which meant either that the Radiesse injection that had been introduced to my left vocal cord back in January of 2010 had dissolved, or that my right vocal cord was becoming paralysed because the tumor was growing. You can guess which one I was hoping for.

I emailed Dr. Martins, my oncologist, and he set up an appointment with otolaryngologist, Dr. Merati at Univ. of Washington. Unfortunately Dr. Merati's first free day was May 27. But of course, I whined to Dr. Martins and as a result, I was seen today by Dr. Weissbrodt, an ENT fellow who works with Dr. Merati at the University of WA. We had a great visit and he did an endoscopy, which is only second to a colonoscopy in my pantheon of least favorite medical procedures. However, rather than the antiquated endoscope that Group Health still uses, this one was much more advanced--it took and saved pictures to a computer file, so I could look at them with Dr. Weissbrodt after the procedure had, thankfully, ended.

If you may recall, in an endoscopy, the nose is temporarily anesthetized and a narrow, long tube, with a camera at the tip is ~~shoved~~ guided down the nasal passage. Then I was requested to say a long "eee" followed by counting from 1-10 and saying some phrases that engaged the vocal cords. The final stretch was breathing deeply using my mouth. That was the 'aha' moment for Dr. Weissbrodt, because when I did it, this is what happened:

Yes, indeed, I am showing you my very own vocal cords, except you can't see them because the muscle that is supposed to power them on the left is completely drooping down, and, in fact, covering my vocal cords AND my windpipe! My tongue is the big whitish thing at the bottom of the photo, so you can orient yourself. No wonder I was having spasms when I climbed the hill on Madison from 3rd to 5th at noon! I could not breathe because of this drooper.

Here is what normal vocal cords and their musculature look like per Gray's Anatomy without the tongue, which would be normally found at the bottom of this picture covering the epiglottis:

You can see the vocal cords in the above illustration because both sides of the muscle are toned and upright. In my case, the knobby part of the arch on the right (my left) no longer has any tone and as a result is lying down, blocking the aperture of the vocal cords (the ovoid hole in the illustration--you can't see much of it in my photo above)

The first illustration seems upside down as to the words, but that is so the view corresponds to the my color photograph. The second illustration contains the words right side up, so it is the left corniculate and cuneiform cartilage and the aryepiglottic fold that are hanging over and blocking the view of the vocal cords and, consequently impeding my breathing.

According to Dr. Weissbrodt, the loss of the injection into my paralyzed vocal cord can be taken care of in a surgical procedure where they incise my throat and go in and insert a small block to plump out my paralyzed vocal cord again. With one stitch they can tie up my drooping cartilage and fold, so it won't flop over and keep me from breathing upon exertion. It's a one day procedure that is done only under local anesthetic because I have to make noises to help them position the block but I have to stay a night in the hospital because there will be a drain installed. I've requested that as long as they are going in below my chin, that they pull that up while they are at it. I will next ask if they can make sure that I will be a coloratura soprano when they get done.

Hopefully, we can schedule this before my daughter graduates from medical school on June 4 (with academic honors mind you!) and leaves me for a 4 year residency at the University of MN, where she and her brother, Seth, will be sharing an apartment. Can't wait to visit them!!

Kentucky Derby

2011-05-09T19:37:00.000-07:00

This past Saturday was the 137th running of the Kentucky Derby. The penultimate time I was there was in 1973, when Secretariat won and went on to win the Triple Crown. It's a little hard to top that, even though I was watching from the infield on a blanket, trying to stay away from the totally inadequate restrooms, and not wearing a hat or gloves.

My dear photographer friend, Dave, went back and worked the Derby this year. I don't have any of those photos, but I do have some of his from a Derby in the late '70's. His parents lived in Louisville near Churchill Downs and there were always large numbers of folks making their way to the run for the roses on the sidewalk in front of Harry and Irma's house. Which was an irresistible pull for Dave and his camera. I hope you enjoy them as much as I have over the years.

LungWalk 2011 a big success weather and otherwise

2011-05-08T17:35:00.000-07:00

I'm a week late posting our fabulous LungWalk news. The very next day after the walk, I had a two day hearing in Everett. And that combined with my infusion on Thursday and a brunch to celebrate my daughter's graduation from medical school yesterday had me hopping.

But back to the good news: DeFeet Lung Cancer was the fifth highest team, raising $1985 for the Lung Association of Washington! You guys rock! Thank you ever so much. Seven of our nine team members braved the blinding sunshine and balmy temperatures, and made it to the walk (we missed you Peter and Spot!). The circular route around Magnuson took us next to the off leash dog area and I promised Scooter and Truffle that we would come back again to retrieve water balls.

Thanks to my team:

Andrea
Amanda
Anne H.
Peggy
Eric (and Atticus)
Merilee
Peter
Spot

And thanks to our generous donors who were with us in spirit:

Anastasia
Anne G.
Ann S.
Mildred
Bill H.
Janet B.
Lillian and Kim
Kurt
Dan M.
Pam P.
Olive D.
Renee
Diana C.
Leslie Allen

I so appreciate everyone's faith and support.

Now for a bit of news. Lately I've been hearing a whistling sound when I breathe. Of course, I jumped to dire conclusions, but my lungs checked out just fine with a stethoscope at the oncologists. However, the whistling continued, especially when I was lying down on my left side at night. Took me two weeks to finally figure it out, but I think the implant that was installed back in January, 2010, has separated from my paralyzed vocal cord. Hopefully, I will hear from the ENT's office at UW medical center this coming week, Then it will be on to a bronchoscopy and probably more intrusive surgery on my throat if a repair is possible. Maybe this time they could give my a chin lift too! I don't think that's too much to ask.

Two Days to Go!

2011-04-29T10:19:00.000-07:00

The Walk/Run for Air is Sunday May 1. Last year it was on the UW campus. This year we will be traversing Magnuson Park. So far we've raised over $1800 for the American Lung Association of Washington! Yay team!

I'd like to thank the following friends who have sponsored me and our team, DeFeet Lung Cancer this year:

Kurt J.
Diana C.
Olive D.
Katy K.
Anne G.
Bill H.
Mildred W.
Renee L
Anasasia S.
Ann S.
Cathryn
Janet B.
Pam P.
Chandler F.

And my team members who will be walking with me:

Anne H.
Merilee B
Andrea T.
Spot
Peter K.
Eric P.
Amanda G.
Peggy J.

There is still time to sign up to run/walk or to donate to the cause. Thanks so much for all of your support. It is truly treasured.

Ok, I cannot resist posting this picture. It gave me a laugh for the day:

Mixed Blessings

2011-04-21T22:07:00.000-07:00

Today is Maundy Thursday. Maundy derives from the Latin word, mandatum, which means command. I've used another form of mandatum in my law practice when I've prepared a writ of mandamus to file with a court, requesting that it command the doing of an action.

In Middle English maunde signified the ceremony of washing the feet of the poor, which also came from a part of the last supper. However, the more important connection to mandatum is found at John 13:34 in the New Testament, where during the last supper, Jesus gave the disciples a new commandment: that they love one another as he loved them.

I was able to receive the clinical trial infusion today, but it did not come without sorrows. The rash was the first issue. It has cleared up significantly, but it was a rash that grew over time, and as a result, what the doctor is concerned about is that it could begin to regrow and perhaps even require hospitalization if it were to fully cover my body and extend into my mucous membranes. But, of course, this is an early stage trial and they can't predict how it would behave. Having survived the rigors of a Tarceva rash, it was a no brainer for me to brave the unknown here, even though when Diane asked Dr. Martins what he would do, if it were him, his response was that he probably would not do the infusion. But, he qualified, he couldn't really say unless he was truly in my shoes.

The second, and more serious issue is that my tumors, according to the clinical trial radiologist back at Bristol Squibb Myers, have grown 21%. The cut off for participation in the clinical trial is 20% growth. The UW radiologist, who initially read the ct scans after they were taken last Saturday, opined that the tumors were stable. And it seems that they have only grown by 5% if you look at the comparison:

Mediastinum: Necrotic mass in the aorticopulmonary window is stable in size, measuring 3.6 x 4.1 cm, previously 3.5 x 4.1 cm. Stable right hilar lymph node measuring 1 x 1.2 cm (4/31).

Lungs: Left lower lobe posterior basal segment pleural-based nodule is stable in size currently measuring 2.3 x 2.4 cm (4/57), previously 2.5 x 2 cm.

But the baseline are the ct scans taken in January, and I don't have copies of those to use in my layman's math calculation. I have requested copies and we shall see. If the tumors continue to grow on the next set of ct scans, I will be dropped from the protocol.

The problem is, if I drop off this clinical trial, there aren't many options for treatment left to me. Avastin, is a drug which might be a possibility. It operates by killing new blood vessels, and thus starving the tumor. But it is only indicated as first line treatment for lung cancer, and I would be on my fifth line treatment at that point in time. Dr. Martins said that there is a similar drug that is administered in pill form that has shown some great promise but I would have to petition my insurance company to pay for it, as it is not a recognized treatment. The cost for the pills is $6,000 for a month's supply.

So with all this to think about, I went to my church's Maundy Thursday service and heard the command to love one another as I have loved you. Brave words that I am coming to better appreciate in their context and in mine.

Ain't too Proud to Beg

2011-04-18T09:47:00.000-07:00

No word yet on the ct scan results. I will send an email to Dr. Martins later today, after I am done pretending to be an appellate judge at Seattle University for their moot court.

In the meantime, if you haven't signed up for the Lung Walk on May 1, please do so. We've raised almost $750 for a great cause. Six folks have signed up to walk with me. And even if you can't come, consider donating. My team is DeFeet Lung Cancer. You can sign up at http://www.lungseattle.com/. Be sure to indicate that you are part of DeFeet! Thanks so much.

Ct scan Saturday

2011-04-16T19:22:00.000-07:00

My daughter, Sarah, the saint, went with me today to my ct scans. She kept me in good humor with her teasing then we came home and finished the first season of Glee together. A wonderful mother/daughter bonding experience. Now comes the wait for the radiologist report.

As we do, I invite you to watch this video. It is a veritable mindbender, the combination of two very different genres, but incredibly moving. Please double click on the screen to get the full effect :

Thanks to Cat on the Dunnett openforum yahoo list for the recommend.

CT scans moved up to this Saturday am

2011-04-13T21:53:00.000-07:00

My next ct scans were scheduled for April 20th but in view of the fact that I was taken off the clinical trial, they have been moved up to, hopefully, show that the experimental drug, while rash inducing, is also killing the tumors. We can try and use that as a lever with the folks at Bristol Myers Squibb. If the tumors are growing, however, all bets are off and it is back to the drawing board to pull a 5th rabbit out of the hat.

So fingers crossed, as I mentioned earlier on Facebook.

A setback

2011-04-07T10:43:00.000-07:00

They postponed my infusion today. My rash has increased and covers about 70% of my body and lacking anything else to blame it on, the protocol for the clinical trial requires this. So I've been prescribed a pound of corticosteroid cream and told to use it twice a day all over. They've moved up the ct scans to next week sometime. So we're back in limbo.

Snarky Saturday

2011-04-02T10:21:00.000-07:00

Somedays, Stephen Colbert is so ON.

The Colbert Report
Tags: Colbert Report Full Episodes,Political Humor & Satire Blog,Video Archive

Another Sweet Dog Story

2011-04-02T00:34:00.000-07:00

The amazing Skidboot.

Lily

2011-03-29T00:18:00.000-07:00

My brother, Mark, does not have any children. However, he has two dogs, Lily and Daisy, Jack Russell Terrier mixes and both rescues. These are his children. Because Lily was a rescue, she is very shy around anyone other than Mark, or his partner, John.

Several weeks ago, one Thursday morning, John was walking both dogs in downtown Seattle near Western and the viaduct, when they were set upon by two other dogs, whose owner could not hold them back. Both Lily and Daisy slipped out of their collars and went running. John was able to grab Daisy but his last sight of Lily was of her running up the off ramp to the viaduct and heading south. That would be the lower level of the viaduct, which is pictured below being repaired after one of our earthquakes:

John called Mark in a panic. Mark was at work in the operating room at the hospital (he's an anesthesiologist), and Mark found a physician to sub in for him, and he and John went searching for Lily on the viaduct. Someone had seen her heading off to the industrial part of Seattle south of downtown, so they, together with neighbors and relatives from John's side of the family, began a sweep of SoDo that lasted Thursday, Friday and part of Saturday. I had just returned from Hawaii and had just had an infusion, so was not able to help in the field. As a result, I participated by assisting Mark by putting an ad with a very generous reward on Craig's List, and by listening to both Mark and John as they went through this very traumatic event for them. It is a very desolate area where Lily was thought to be, with 16 wheelers all over the place, and dozens of railroad tracks blocking traffic. But the group was indefatigable, placing signs, knocking on doors of warehouses, factories, and even a sweat shop once! Mark and John were in the industrial part of Seattle at 3am both Fri and Saturday mornings. And then getting up at 5 or 6 am afterwards to resume their search.

On Saturday, Mark increased his already generous reward on Craig's List five fold. And then at 11 a miracle happened. A young man, on his way to Tully's (the old Rainier brewery) on the west of I-5, saw an exhausted dog shivering on the doorsteps of a vacant office building. He took this picture with his phone camera:

He went up to the very tired, cold dog, whose front paws were shredded, and put his jacket over her to warm her up. Then he fashioned a collar and leash out of some string he had in his backpack and he and the dog went to Tully's where the dog could further warm up, and he could meet the friends he was planning to meet and get some coffee. He called his wife and texted the dog picture to her. She went online to Craig's list and found my brother's ad with his picture of Lily and said, "I think I found the dog." She called my brother's number and Mark and John zoomed down to Tully's to a very jubilant and tearful reunion with Lily. It was just incredible.

The couple was very kind. They were the loving parents of a rescue dog themselves, and insisted that they didn't want the reward, but my very stubborn brother was having none of it and he wrote them the check for the full amount. Which was truly serendipity because this was a young couple living in a one bedroom apartment in Ballard, and it seemed that they not only deserved the reward but that they could use the money.

So that Saturday evening, the guys held a champagne celebration for Lily in their house on Perkins Lane, and all of John's relatives and all their neighbors who assisted in the search came over and toasted Lily's return.

I had a nice conversation with some of their neighbors and, as it does oftentimes with me, we discussed modern day politics. And to no one's surprise here, I have very definite opinions on things and was quite free with them. Well, it turns out that the one of the persons I was talking with works for the Ninth Circuit Court of Appeals. As a Judge. Well.... Good thing I practice in state courts.

His wife raises black labs, so they too, are dog lovers and it turns out that one weekend evening when he was out of town, she was walking one of their labs on the Magnolia bluff and her dog fell over the bluff and was caught in the branches of a tree. She called Mark and John and they lowered Mark on a rope so he could grab the lab and they pulled them back up the bluff. She said she felt, that in searching for Lily, she was only returning the favor.

The candle of the heart

2011-03-28T16:11:00.000-07:00

I found the following, written by Joan Borysenko, an MD and psychologist, today and wanted to share:

“You are at my side, dear friends, and God is everywhere. Yet ultimately we are alone, making our way home by the candle of the heart. The light is steady and sure but extends only far enough to see the next step. That there are steps beyond is a matter of faith. That we have the faith to endure and walk our own journey-even when we think that we are lost- is a gift of grace, and of friendship. Many times our light seems to go out. But another light, one held by a stranger or a friend, a book or a song, a blackbird or a wildflower, comes close enough so that we can see our path by its light. And in time we realize that the light we have borrowed was always also our own. ”

Updates, Updates

2011-03-26T12:07:00.000-07:00

I had my latest infusion Thursday. It's really not chemotherapy because the experimental drug, MDX 1105, is not cytotoxic, i.e. it does not kill cells. Again, what it does, is rev up my immune system so that it becomes aware of the cancer and attacks it like it would any other invasive foreign body. After initial blood tests and meeting with the trial manager, I went to my assigned 'princess room' (so called by the nurses because it's a separate room, not just a reclining chair cordoned off by curtains) at the clinical trials unit and had the infusion. It took 2 hours, one for the infusion and a second hour to monitor my temperature and blood pressure. Everything went well, and other than my usual spring allergies and a most attractive upper body rash, I seem to be in good physical health.

Hawaii Update

The house that I stayed at with my friends is located on Kealakekua Bay on the west side of Hawaii, the big island. That bay, which is the location of the Captain Cook monument, was hit by the tsunami from the March 11, 2011, Japanese earthquake. The pictures I saw online showed houses that had fronted on the ocean like mine, buckled in half and one was completely torn from its foundation and pulled into the bay where it floated before sinking.

My friend, Tim from Honolulu, took his sailboat out of the marina once he heard the tsunami was coming, and went out into the ocean where he stayed all night and part of the next day. He and his boat made it, and his current marina weathered the tsunami, but the marina where had had kept his boat last year was almost completely wrecked.

I worried about what had happened to our beautiful vacation home for about five days, and finally sent an email to the vacation rental company inquiring. I heard back from the daughter of the owners of the property, who live in California:

Dear Regina;

Thank you for your thoughts. The house was untouched- a miracle- but there were homes near Kealakekua bay that were swept into the bay. There is a big cleanup effort to help the marine life there. Thank you for your prayers. If you could write a brief comment on VRBO about your stay at the house, that would be great. Please ask Tim as well.

Dad had a heart attack and is at home recovering and Mom just fell a fractured her wrist. We never rented the house out until last year. We are trying so hard to keep it rented to great people like you to relieve the costs (i.e. like the tsunami insurance.)

Best Shelley

That was a relief. Maybe I can return next year. One of my best vacations ever.

Proposed Change to the Presbyterian Book of Order to permit ordination of gays and lesbians

The Seattle Presbytery met and voted on the proposed change to the Book of Order which would permit the ordination of gays and lesbians on March 15, 2011. I was one of three voting delegates sent by my church. The meeting was at Steel Lake Presbyterian Church in Federal Way, so the three of us car pooled after work to make it to the meeting.

I would like to report that the change passed in our Presbytery, but I cannot. There were two hours of impassioned discussion by elders both pro and con. The majority speaking against the proposition were male, and many were about my age. Although I wanted to speak, I felt constrained by my lack of voice and instead, uncharacteristically. sat mute. However, while sitting there I reviewed the New Revised bible tucked in the pocket of pew ahead of me. As a speaker railed about how he was constrained by the word of God as revealed in the Bible to vote against the measure, I found this passage in the New Testament, in the sixth chapter of Luke and wondered how the Presbyterian church had been able to wriggle out of the plain wording of this direct quote from Jesus:

18 ‘Anyone who divorces his wife and marries another commits adultery, and whoever marries a woman divorced from her husband commits adultery.

I wanted to ask all the literalists, how many of them were divorced.

And then again, I wondered how they reconciled their positions with this statement from Second Peter:

18 Slaves, accept the authority of your masters with all deference, not only those who are kind and gentle but also those who are harsh. 19For it is to your credit if, being aware of God, you endure pain while suffering unjustly. 20If you endure when you are beaten for doing wrong, where is the credit in that? But if you endure when you do right and suffer for it, you have God’s approval. 21For to this you have been called, because Christ also suffered for you, leaving you an example, so that you should follow in his steps.

It is not so long ago that women were finally able to be ordained as ministers in the Presbyterian church. Perhaps that is why many of those speaking in favor of the change to the Book of Order were women. The final vote was 124 to 106 or something like that.

However, nationally, the measure appears to be headed for approval. If so, I expect that the Presbyterian Church will split again, probably along the lines that they split over slavery during the Civil War. Although the largest Presbyterian church in my Presbytery, University Presbyterian, seems headed that way, if their ministers have anything to say about it. What continues to perplex me is how many of the members of that church seem not to have been informed of this by their leadership.

Luke, chapter 5:

37 ‘Do not judge, and you will not be judged; do not condemn, and you will not be condemned. Forgive, and you will be forgiven; ³⁸give, and it will be given to you. A good measure, pressed down, shaken together, running over, will be put into your lap; for the measure you give will be the measure you get back.’

Staying the Course

2011-03-22T22:28:00.000-07:00

I usually can manage to deal with what life throws at me. But it's much harder to be a rock when my children experience adversity or disappointment. As someone much wiser than me said, "You're only as happy as your least happy child." It's been a bit of a tough week.

DeFeet Lung Cancer--the 2011 version

2011-03-14T23:30:00.000-07:00

What began as a lark last year turned into a very fun event. And quite humbling too, when they totaled up all you donated to the American Lung Association of Washington for our team: DeFeet Lung Cancer, we finished in second place for the most money raised for an individual team, raising over $2,000!

I hope that those of you who participated last year walking, or jogging will do so again. And I would love to see lots more of you out there. It's on a Sunday this time--May 1, 2011. So fingers crossed that the weather will be a bit better since we're starting later in the spring. And if you can't make it to Seattle for the fun and celebration, well... you can still donate. You can go to this page and click on the "join a team" or "donate to a team" button and then find DeFeet. I'd be happy to put up any guests who might come in from out of town. The dogs would love to see you. The dachshunds, at least, will be there for the walk this year, which will be held at Magnuson Park, rather than UW.

It should be a great time! And don't forget, we all go to brunch afterwards!

Thank you so much for your support. There are so many pressing needs these days and for most of us, we are trying to make do with less. We just do what we can do and hope to make a difference. I'll keep you updated on the team progress.

That which was lost is found

2011-03-13T16:04:00.000-07:00

Last night while I was grocery shopping, my brother called me to tell me that Aaron had called home and his parents were overjoyed. What a wonderful story, one bright spot amid the horror and suffering in Japan. KING 5 did a story on the Strussman's ordeal before Aaron's call.

And the bizjournal did a story afterwards.

Thank you all for your kind thoughts and prayers during this very stressful time.

A Child Lost in Japan

2011-03-11T21:02:00.000-08:00

My brother's partner posted this on his Facebook site tonight, I want to relay it to you, in hopes that someone might have a key to this. As a parent, I can just imagine what they are going through:

Our very dear friends Todd and Kim Strumwasser have a son, Aaron, who is teaching English in Sendai, Japan, the EPICENTER of the earthquake. They have had no word from him yet. DOES ANYONE KNOW OF ANY WAY TO CONTACT PEOPLE IN THAT CITY? PLEASE HELP!!!! Thank you.

If any of you have ideas, please let me know. Until then prayers are welcome. Many, many thanks.

CT Scan interpretation update

2011-03-10T21:30:00.000-08:00

Today was my appointment with Dr. Martins, prior to starting the second cycle of the clinical trial (every 2 weeks for 2 months).

Bad news first: Dr. Martins explained that the tumors, in the aggregate, had increased in size 9 %. He said that if the increase had been 21% or higher, I would be out of the trial.

The good news is, however, that the largest of the tumors (3 of them) show necrotizing in the center. I looked at the ct scans and could see that they were darker in the center and it seemed that about 80% of the area was darkened. Dr. Martins also said that he's has never seen this development in lung cancer adenocarcinoma. Sometimes in other types of cancer but not this. So he is assuming it is a result of the new therapy. Next ct scan will show whether the necrotizing centers of the tumors are truly an indication of death or rather that they are an indication of growth of the tumor.

I consulted with another Seattle oncologist about this, before I knew the measurements, and his response was: "If it's enlarging, then it's most compatible with progression and just having some death in the inner core from growing too fast." So we are not out of the woods yet.

It gets complicated

2011-03-09T12:12:00.000-08:00

Just heard back from my oncologist, Dr. Martins. He says "Some of the lesions on lymph nodes are now partially necrotic (dead). Sometimes there is even some increase in size when lesion become liquefied in the center."

Here's the CT scan read.

Impression:

Stable aorticopulmonary window nodal conglomerate mass, now showing more necrosis.
Slight increase in size of left lower lobe posterior basal segment nodule, also showing necrosis. Increase in size could be related to treatment response.

Slightly more prominent cluster of nodules with associated scar in the left lower lobe.

No evidence of intraabdominal or pelvic metastatic disease.

Small stable indeterminate subcapsular liver lesion in segment 2.

Stable pelvic cystic lesion, for which differential diagnosis includes benign or malignant ovarian neoplasm. Further
characterization can be done by pelvic MRI.

More information tomorrow after meeting with Dr. Martins.

While we're waiting, an exegisis

2011-03-08T23:34:00.000-08:00

The CT scans today went fine. I had to swallow a quart of clear solution which supposedly helped bring everything into better focus, in addition to the solution they pumped through my port right before the scans started. You can feel the solution that is injected into the port. It feels like a concentrated hot wave and also makes you feel like you are peeing in your pants. Most unsettling. This time I could feel the warmth spread all the way to my fingertips, so hopefully the images were clear and distinct.

Tonight, returned home late after a dinner and a meeting of the session at church. I know, it's amazing that this deeply raised-in-Catholicism girl has been a member of the Presbyterian church since 1991 and an ordained elder since 1993. But I have to say that as an attorney, I find the system of governance to be quite understandable (lawyers were the backbone of the founding of the Presbyterian church) and as a person, I have come to value the friendships that I have made there. It is all about fellowship.

Which is why I hate to see the first cracks in a new schism within the American Presbyterian church. The last time the Presbyterian church split in two, it was over slavery, in 1861. Now it appears that the church may be splitting over the ordination of gays. Keep in mind that not only ministers are ordained in the Presbyterian church, so are lay leaders, e.g. elders and deacons. So under the present Presbyterian Book of Order, gays cannot be ordained. There has been agitation in the past twenty years to change this. I became a member of the Presbyterian church in 1991 when it appeared that the church was relaxing its prohibition. That was a false hope. I have stayed with the church for the past 20 years, because 1) I found a home and 2) I believe that one can effect change better by working from within.

However, it appears that there may be a second historic split of the Presbyterian church in the future. Earlier this year a letter was sent out to Presbyterians, by those fearful of opening ordination to sexual minorities. This letter can be found here. They have called for a meeting in late August in Minneapolis, presumably to discuss peeling off from the denomination. Two pastors in the largest Presbyterian church in Seattle signed the letter, but the members of the congregation that I have spoke with, are unaware that their pastors are doing this. That's interesting.

A Presbyterian minister, Rev. Margaret Aymer Oget, among others, has published a response to this letter. I was moved by her statements in a way that I have not been moved in a long time. Her conclusion is worth reprinting in full:

HOW WE GOT TO THIS PLACE -- AN RSVP

The brethren who wrote this letter to the church have, on February 7th, asked that we read their letter rather than to consider the signatories. This I have tried to do. Some will claim I have done so unfairly. This is entirely possible; I have never claimed to other than a subjective knowledge, baptized but still quite human.

Still there is one phrase from the letter with which I must take direct issue: “How we got to this place is less important than how we move forward.” (para 3.) Please consider my response to this phrase my RSVP to the churchwide invitation. For indeed, my brothers, how we got to this place may well be the crux of the matter.

We got to this place, as a denomination, by praying to the Triune God and thinking as two or three gathered together about the authority of scripture, Christology, and the extent of salvation.

We got to this place, as a denomination, by ordaining groups that, until fairly recent history, were considered ineligible for ordained ministry: groups of color, women, the divorced, and members of the church under the age of 21.
We got to this place, as a denomination by suffering the creation of fellowships (like the Layman) in opposition to the Confession of 1967 and silently enduring the refusal of churches to live into their financial obligations to the whole denomination.

We got to this place because, in 1978, we declared that seminaries of the Presbyterian Church (USA), should be safe places of non-discrimination for all people.
We got to this place by acting on our belief that the sacraments of baptism and the Lord's supper are not ours to control but are the property of the God whose grace abounds beyond our human understanding.

We got to this place by following the Christ who was belittled by the religious leaders of his day for his breaking of biblical commands (notably the fourth commandment and laws regarding eating abomination); and by following the Spirit that did not even require of Cornelius the mark of the covenant (circumcision) before it fell on him, bringing him into the church.

Most recently, we got to this place by affirming as a General Assembly the anti-racist, Reformed confession written in Belhar, South Africa that affirmed: God has entrusted the church with reconciliation, therefore, “any teaching which attempts to legitimate such forced separation by appeal to the gospel, and is not prepared to venture on the road of obedience and reconciliation, but rather, out of prejudice, fear, selfishness and unbelief, denies in advance the reconciling power of the gospel, must be considered ideology and false doctrine.”

This year marks the sesquicentennial of the beginning of the US Civil War, a war which caused the great schism in the Presbyterian Church.
My brothers, I fear, sadly, that issues of property and like-mindedness, difference in biblical interpretation and authority and an unwillingness to be part of a larger body that fundamentally challenged their adherence to slaveocracy were exactly the reasons that the fellowships of congregations in the south created new seminaries, new synods and ultimately a new denomination.

Indeed, my brothers, my exegesis suggests that “how we got to this place,” and thus where we go from here, is precisely the point at issue.

My brothers, you invite the church into an adventure that is not at all new, but historically very familiar. It is an adventure marked by the European cultural norms of individual self-government, the right of property, a modernist take on liberty, a neo-colonialist model of mission, and a pre-modern understanding of biblical texts. This adventure has as its intent to grow the church in and for the twenty-first century, with neither consideration nor validation of how we got to this place.

I admit I am not thus tempted, and must respectfully decline.

Instead, with God's help, I will remain in the Presbyterian Church, USA, and with my denomination I will follow the Christ whose followers dwindled from 5000 to zero over the course of three years, yet who calls us still to follow; who has been demonstrated a capable healer of the deathly ill and has revealed himself to be the resurrection and the life.

With God's help, I will remain in this denomination, following the Spirit who fell on eunuch and centurion, and immigrant peoples in and from every language group of the Roman-conquered world, regardless of biblical adherence to seminal commands such as sabbath, kashrut and circumcision.
With God's help, I will remain in this denomination and follow the God who promises that, at the time of the coming kingdom, lion and lamb will lie down together, who calls for justice to roll down like waters, and yet desires mercy and not a sacrifice.
With God's help, I will remain in this denomination, living out my call with energy, intelligence, imagination and love, as I seek to do ministry with and among the contentious, shrinking, justice-seeking, mercy-doing, humbly-walking, peacemaking sisters and brothers of the Presbyterian Church (USA), who although we are dying yet, see, we live.

Even with God's help, I will be imperfect in my discipleship. Yet will I follow, relying on Jesus, my high priest, to make intercession for me; asking the Spirit of God to give me speech; and confessing with this denomination, and with the church in every age–in life, in death and in life after death, we belong to God.

Soli Deo Gloria,

Rev. Margaret Aymer Oget, Ph. D.
Minister of Word and Sacrament

Rev. Oget's response makes me proud to be a Presbyterian at this time.

Scanxiety

2011-03-07T23:36:00.000-08:00

This is a term that I first saw used on http://www.cancergrace.org/. It aptly describes my state tonight as tomorrow I have ct scans scheduled. The first cycle of the clinical trial has completed and now we find out if it has had any effect on my lung cancer. However, even if the tumors have grown during this period, they will continue to keep me in the trial for at least one more cycle because they somehow need two cycles before they can feel confident that the MDX 1105 is either working or not.

So, in casting about for diversions tonight, I came across this Improv Everywhere spoof and wanted to share it with you. It made me laugh out loud, not a mean feat given the circumstances.

A Pandora Find

2011-03-01T00:04:00.000-08:00

When I was in Hawaii, our friend Tim introduced me to http://www.pandora.com/. It's a wonderful website where you can put in a favorite group and it pulls up artists that are similar musically. Tim had put in Van Morrison so we had a great time listening to not only Van Morrison but Allman Brothers, Grateful Dead and others on the back verandah while we were relaxing and looking across the bay trying to see whales or spinner dolphins.

When I came home this weekend, I logged on to Pandora and put in the California Guitar Trio as a place to start. The comparables that Pandora came up with were wonderful--musicians I had no clue about. So far my favorite is a guitarist named Preston Reed. He has a very distinctive style. I hope you enjoy it as much as I have.

Credit Card Fraud

2011-02-25T11:09:00.000-08:00

I made it back from Kona, unfortunately. It was snowing as we landed--just the sort of thing to make me feel at home. A number of the folks on the plane yelled out "Turn Back!" at the time. Could not have agreed more. There were folks in shorts and flip flops, or less, at baggage claim and they sure looked cold.

But I'm here and dealing with regular life. Had my third clinical trial infusion yesterday. It went well but as I'd had only 5 hours of sleep courtesy of my late arrival, I napped in the afternoon. I am just starting to feel back to normal.

One thing I was dealing with before I left for vacation was a charge that I did not authorize on my mileage credit card. I had been using it more than normal during the holidays, so I checked the statement to make sure that the returns were credited. When I did so a charge jumped out at me--$108 for something called "Hospice of St. John" in Lakewood, CO. I have never heard of this outfit before or since. So I initiated a dispute with the credit card company. Today I got word that it's been turned into a fraud investigation. So, I would urge all of you to be vigilant and check your bank and credit card statements closely. This is an ever present danger.

More later!

Aloha

2011-02-15T21:53:00.000-08:00

I am leaving in the morning for a week's trip to Hawaii ( the big island) with my friends, Mary Pat and Tim.

We're renting a 3 bedroom house. My friend, Ed in Missouri, clued me into this place last year and we made reservations right away based upon his recommendation. The details can be found when you click on the title above. Here's where we'll be at sunset tomorrow night:

Mai Tais for everyone! I hope you have a wonderful week (although snow is predicted for Seattle on the weekend--tee hee!).

Mahalo for your continuing friendship. See you soon.

Happy Valentine's Day

2011-02-13T22:58:00.000-08:00

I usually am not too keen on V.D. but this year my oldest son made and sent a Valentine to me that teared me up. I'd like to share it with you:

the three dogs, doing what they do best! In hearts, mostly

Sniff. Happy Valentines Day to one and all.

Seth Cullen and Susannah Perrin Cullen, my great great grandparents

2011-02-09T01:09:00.000-08:00

Seth Cullen

Susannah Perrin Cullen

Seth Cullen, was born on June 21, 1819 at Great Hale near Boston, Lincolnshire, England. He had ten siblings (thank you to Jim Cullen of Sandusky,OH, for setting me straight on this): an older sister, Anne ( August 3, 1817); younger brother Enos (April 8, 1821-1870); younger sister, Sarah, (1823-1912); Charlotte Gratrix (1824-1826), George (1827 -1890) who owned the Good Intent beer house on Church Lane in Friskney, Lincolnshire; a second Charlotte Gratrix (1830-?); Jemima Augusta (1832-?); Betsy Elvina (1834-1852); Harriet Agnes (1836-1893); and Charles Frederick (1841-?). Seth and Enos emigrated to the United States in 1840, a year after Seth joined the Wesleyan Methodist 'society' in England. While Enos settled in Sandusky, Seth moved to Maumee, Ohio where he worked as a mason, according to census records. Seth joined the Methodist Episcopal church in Maumee in 1841, and became licensed to preach in 1842. In May of 1843, he married Susannah Perrin, who was born December 1, 1826, in River John, Picton County, Nova Scotia. Her family emigrated to Ohio from Canada in 1837. She was the fourth of nine children. Two of her brothers were killed serving the Union during the Civil War. James H. Perrin served in the 14th Ohio Volunteer Infantry and died of his wounds the day after the battle of Jonesboro, GA, on September 1, 1864. He is buried in Marietta, GA. Susannah's brother Benjamin served with the 9th Louisiana Colored during the Civil War and died on July 27, 1865. One brother, David H. Perrin, survived his service during the War, dying in December, 1918.

In 1861 the couple moved to Napoleon, Ohio and in 1873, they moved to a farm in Paulding, Ohio, where they resided for the rest of their lives. According to his obituary, Seth "through the many years until old age, faithfully served the church where duty called." I recall my grandmother, Helen Cullen, telling me back in 1989 when she had some long reminiscences with me, that he was a "devil," I suppose of the very stern, implacable variety that seemed to arise in some called to the ministry back in those days (and even sometimes now....)

Seth and Susannah had 8 daughters and one son, my great grandfather, W.H. Cullen. According to a genealogist who searched the records, the children born to the Cullens were: Frances Charlotte ("Lottie"), born June 3, 1845; Miranda, born 1846; Elizabeth was born in 1849; Marian, born in 1851; Helen Agnes, April 18, 1853; Ada, April 16, 1847; Ava, December 19, 1862; William Henry ("WH"), February 4, 1864 and Leora May ("Ora"), October 8, 1870, when Susannah was 44 years old.

Marian died when she was 11 years old and another, Miranda, who married George Hildred of Napoleon, Ohio, died on July 5, 1893. Elizabeth married M.E. Heller, of Napoleon, in 1868 where they resided. But by 1905, Elizabeth was perhaps a widow and living, in Porto Rico [sic per Susannah Perrin Cullen's newspaper obituary]. Frances Charlotte married John L. Halter of Napoleon, Ohio around 1870. Ada married Henry Hullinger and they lived in Andrews, Indiana. Helen married James Parmalee Gasser on December 25, 1872 and they lived in Paulding. Leora married Ira Betts in 1905 and they moved to Michigan after the deaths of her parents, living in Lansing, Saginaw and Munising. Ava was over 40 years old when she married Clark Mead, after the death of her mother, and she raised Clark's three children from a prior marriage. And my great grandfather, W.H., married Lulu Huston in 1892.

In the old real estate books of Paulding there is a Cullen Addition, which was platted from Seth's farm. Seth and Susannah's home was about two blocks from the W.H. Cullen homestead on North Williams. Here are Seth and Susan with 6 of their children from a photo on a Cullen genealogy website (Elizabeth Heller appears to be missing, according to the accompanying text--many thanks to Jean Scherer of Toledo, Ohio and Jim Cullen for providing these photos):

Susannah (who eventually shortened her name to Susan, but I love her full name) died on December 16, 1905. According to the handwritten memorial of her funeral, the songs sung by the choir at her service were, "One Sweetly Solemn Thought," "Nearer My God to Thee," and "My Jesus as Thou Wilt." Pall bearers were Frank A Roberts, E.E. Bugher, J. Kirakofe, O. Morrow, J. Kuoedler, and F. Atwell. One of the newspaper obituaries that her son, WH Cullen, my great grandfather, saved, was from the Paulding Democrat. It reads in a Victorian manner, with flowery phrases to describe what were considered important details of death at the time, and to a readership for whom death was commonplace, in a way that it is not today:

People of Paulding were shocked last Saturday morning when the news was circulated that Mrs. Cullen, one of the best known pioneer ladies of the town had suddenly and unexpectedly passed away.

When Mrs. Cullen failed to arise at her usual hour that morning members of her family investigated and found her sleeping the sleep that knows no waking. She had passed away but a short time before discovery as her body had not yet taken on the death chill. She laid with features calm and peaceful, as if there had been no struggle and evidently she had unconsciously passed from the mortal to the inmmortal sleep.

Mrs. Cullen was one of the Mothers of Israel. Her character was one of the kind that all admire, pure, sweet, holy, a christian of life long service and devotion. She united with the M.E. church in 1842 and has ever been earnest and consistent in the service of the Master. The Paulding congregation will miss the gentle and helpful influence which she has for so many years exerted.

Here is the Memorial Record of her funeral:

Seth was quite deaf towards the end of his life and it was so significant that it was noted that Aunt Bebe found it difficult to know her grandfather as a result. Seth died a year and a half later on August 26, 1907. He has a similar Memorial, but only two songs are listed for the service: "Nearer My God to Thee," and "Tis Finished." Flower donations were fewer as well. Pallbearers were Messrs Roberts, Atwell, Dunathen, Kericoff (one wonders if the spelling is a deviation from Kirakofe above), Crain, and Morrow. Both were buried in the Live Oak Cemetery in Paulding.

A Macalester Story

2011-02-04T00:40:00.000-08:00

I attended college in the aftermath of Kent State, just after the anti war movement peaked. Of course, we couldn't see it at the time, but... Macalester College was a small urban college in St. Paul, MN that was very liberal for its time. The dorms, in 1970, were all coed, and there were no hours, so you pretty much could do as you wanted. The drinking age in Minnesota was still 21, which meant you either had to get an older friend, had to get a fake id, or buy your liquor at George's on Snelling Avenue--or you could find other methods of getting high. I remember graffiti on the wall between Dayton (which is no more) and Kirk Halls that read, "Why are you stoned, when you could be tripping?" Macalester was a very, as we used to say, laid back place. We promoted and tolerated what was termed 'marvelous diversity,' but it usually meant most folks had long hair regardless of their sex and everyone wore jeans. In this mix, Michael stood out like a sore thumb.

Michael was part of a group that I became friends with during the 1972-1973 school year, a wonderful collection of funny, smart, iconoclastic individuals who were always interesting to be around because they weren't trying to be cool. I mentioned these folks last September, when I reminisced about making the fur lined jock straps.

Michael was the only student at Macalester who drove a silver Lincoln Continental Mark IV. I would venture to guess that he was the only college student in the Twin Cities at the time who drove a big fancy car like that. And he was proud of that car. He used to drive it from his dorm at the Stadium up Snelling Avenue 2 blocks north to the SAGA cafeteria for his meals. He was well dressed, never in jeans, and his hair was quite short for the time. It was our understanding, always spoken of sotto voce, that his father was no. 2 in the Chicago mob. Michael had a long, Italian last name (ending in a vowel), and several things had occurred in his first two years at Macalester that seemed to prove out the rumor.

The first story I heard was that the year before there had been a serious falling out that turned into a small war within the Chicago mafia. As a result, Michael had received a hurried call late at night telling him to 'hit the mattresses.' Mind you, this was before I had read or even heard of The Godfather by Mario Puzo, so that was the first time I had heard that phrase. Michael disappeared from school for a week or so and no one at the college knew where he was. But he resurfaced just like nothing had happened, and things went back to normal at college and in Chicago. The other story I was told, was that during spring break, 1972, Michael drove down to Florida with some other Macalester students. He was under strict instructions to phone in regularly to his parents. In northern Florida, they stopped at a 7-11 to take a break (this was back in the days before cell phones, mind you) and Michael went to a pay phone and called home. His mother answered and said to him, "I know where you are--you are on the corner of .......... and .........." And proceeded to name the intersection and the town he was phoning from.

Now these seem like tall stories and I might not have believed them, except I was party to two events in the spring of 1973 that involved Michael. And they banished any doubts that I might have had at the time.

The first occurrence was when the group of us decided one fine spring afternoon, to bail from college and drive over to Minnehaha Falls for a picnic. Goodies were gathered and they included not only food but beer and weed. None of us were 21 as I recall. We had a great time. In particular, I remember this game where a circle was formed and one person went in the center of the circle and would fall outward and those in the circle would catch the one in the middle and push the person back up and over to another part of the circle. It can be done nicely if you are very relaxed. And we were. No one was dropped and folks were very mellow. Except Michael. He didn't smoke and I don't think he drank but he was there enjoying himself with the rest of us:

Steve and Mary

Mary

Michael

Clark

Lonnie and Holly 1

Chicka!

Holly 2

Holly 1 and Steve

Kathy

I was taking the pictures so I was not in any of them and there are some folks who were there, who were inexplicably left out. Lucky for them, eh?

We spent several hours cavorting and eating and drinking and enjoying ourselves. But all good things must come to an end, so we packed up and got into the various vehicles that had ferried us to the park. A couple of guys were clowning in the parking lot and it must have caught the attention of a police cruiser because he started following us and put his lights on. Our gooses appeared to be collectively cooked because of the contraband in the trunks of the cars. It was at this point that Michael sprang into action. He got out of the Lincoln Continental and began to talk with the police officer who had emerged from the cruiser. He was extremely polite and extremely charming--for the life of me I can't remember what he said but he knew exactly how to talk to the police officer and the cop eventually was eating out of Michael's hand. The rest of us were hunkered down in our cars, waiting for the axe to fall, when all of a sudden the police officer gave a wave to Michael, who got back into his silver tank and that was all she wrote. We had escaped detention and possible searches through the heretofore unknown talents of Michael. When we cornered him back at college and asked him about it, he shrugged his shoulders and said he knew all kinds of cops in Chicago. It was second nature to him. Watching him, it was magic.

The other event, happened the day we all left Macalester at the end of the school year. My friend Jay was driving down to his family in Florida and he had agreed to take me to Lexington on his way. Michael invited us to his family's home in Chicago for dinner on the way. Here is the group, in the courtyard of Kirk Hall, all perched on the hood of Michael's Mark IV, that day, before we all scattered to the four winds:

Michael is in the black turtleneck. I am behind and to his right and Jay is behind me.

It took us a number of hours to drive to Michael's home. It was in Chicago Heights, one of the non descript suburbs south of Chicago, and the house itself was an unremarkable 50's split level. Once inside, we went to the basement, where the kitchen and dining room were located. There was a mirrored bar on one wall that held more liquor bottles than I had ever seen in my life. And some of them were highly unusual bottles with bright blue or other similarly colored liquids in them. Michael's parents were very warm, and very welcoming and I think he had a younger sister who was present as well. We sat down to dinner which, I thought, consisted of a wonderful spaghetti dish. But that was only the first course. They served us steak for the next course and there may have been courses following that. All I know is that I was bursting at the seams trying to eat all that was set before me.

Mr. P, Michael's dad, had a booming voice and regaled us with a number of stories throughout dinner. The only one that I remember was when Mr. P got some sort of semi-serious citation and decided to contest it. He went in to the court and the judge said to him, "Mr. P, I see from the report here that you are in the vending machine business. That must be a lucrative business." "No your honor," said Mr. P dismissively, " it is a VERY lucrative business." The citation was thereafter quickly dismissed, according to Mr. P. An amazing dinner. We left several hours later and drove most of the night to make it to Lexington. Coffee and cigarettes kept us going.

I spoke with Michael 6 months later whien I was on Christmas break from first year law school and visiting in the Twin Cities. And then some time after that Michael's father died unexpectedly of a heart attack. Michael assumed that he would take over for his father because his older brother was a wastrel, and also because his father had promised it to Michael. But for the authority to truly shift to Michael, there was some sort of face to face rite of passage where Mr. P, Michael and Mr. P's underlings had to be present. At the time of his father's death, this had not taken place. As a result, the power went to someone else in the organization and Michael's family was out entirely. Michael mentioned that things were pretty tight for a while and he ended up working for a police department outside Chicago in some capacity. He likened it to Yasser Arafat working for the Israelis. I laughed and commiserated with him. Several years later, I invited him to my wedding, and he sent a very nice present but did not attend. And, alas, since then we have dropped out of touch.

I hope he is doing well. He certainly has some unusual talents.

Post script: Although I have several girlfriends from college who I count as dear, dear friends and we've stayed in touch over 37 years, I actually lost contact with most of the members of this group until our joint 2009 Macalester College reunion. It was great to see everyone. We simply picked up where we left off, and none of them have aged one bit!

Chicka is framed between two cool kids from Kirk Hall: Doc and Chris. Fred (who used to have a big orange afro and wore a top hat and a cape sometimes) is to her left. I can't resist, here is Chris back in the day:

Into the clinical trial

2011-01-28T00:00:00.000-08:00

Yesterday my daughter picked me up at 7 am and we were at Seattle Cancer Care by 7:15 for my blood draw. Then on to see Dr. Martins at 8:20 who informed me that I was to be part of the clinical trial. But there was a snowstorm raging in Princeton,New Jersey, the location of Medarex, the newly acquired subsidiary of Bristol Myers, that is developing the drug. As a result, the national clinical trial managers were delayed in getting to work, so the trial administrator at SCCA did not have the dosage that had been selected for me to take. My chemo was set to start at 12:30pm. There was no cancellation and early admit this time.

And once I was admitted to the Clinical trials unit, I learned that this infusion/trial would take a miniumum of 5 hours. First the nurse had to insert an IV in my arm for required blood draws because she could not use my port to both both take blood samples and administer the 'chemo'. So after one failure to hook me up, the nurse got the apparatus into my arm for the duration. Then she proceeded to take out enough blood to fill 12-15 test tubes. I gave up counting. My daughter made sure I was drinking plenty of liquids.

After that, the MDX-1105 came up from the pharmacy. I received .72 mg, the second lowest amount administered. Largest amount is 10 mg. With the small amount, I did not have to take a prophylactic drug, Benadryl, to protect against severe reactions. This meant no afternoon nap. Instead my daughter beat me badly in 3 games of Scrabble (it's so humbling when they're so much smarter than you). The chemo took about an hour with vital signs tested every 15 minutes plus a blood draw. At the completion of the chemo, my vital signs were tested with a blood draw every 15 minutes for another hour. Then every 30 minutes for a second hour. Then once in a hour. Then another two hours of waiting for the final vital signs/blood test. We were at SCCA for 12 hours total. My daughter was a real trooper!

I didn't have any side effects yesterday other than fatigue. Tonight I started feeling queasy, but there's no way to tell if that's a delayed effect of the chemo, food poisoning, or the flu. Choices, choices. Hopefully tomorrow it will be gone no matter what it is. I went to SCCA for a followup blood draw today, and have to return tomorrow and Saturday, and then on Feb 2. My next infusion, assuming no problems with the blood sampling, is Feb. 9. I was assured it would not take 12 hours next time.

So it's back to watching and waiting. Speaking of watching, Sarah and I watched The Kids Are All Right last night. I enjoyed it and thought both Annette Benning and Julianne Moore did great work as the married couple. However, I didn't know whether to be amused or offended when their characters talked about why lesbian porn did not turn them on--"It's always straight women playing lesbians." Overall, though, the depiction of the stresses of a long term marriage seeemed in tune with many, if not most marriages, regardless of gender. Recommended.

My brother does GREAT

2011-01-24T00:18:00.000-08:00

http://seattletimes.nwsource.com/html/localnews/2014020849_anesthesia24m.html

Mark is leaving Thursday for two weeks in Ethiopia. Keep your fingers crossed that he makes it safely, he's down with a bad cold presently. I am so proud of him.

Of course, he is my little brother, so I always think of him like this:

P.S. Just had my memory jogged by fellow Mac alum, Louisa, that the Mark's partner in their anesthesia group, Richard Solazzi, is a Macalester college graduate. Oski-Wow-Wow!!

Learning to Drive

2011-01-23T14:58:00.000-08:00

Growing up in the 50's and 60's, driving a car seemed so glamorous, so grown up. My great grandfather, W.H. Cullen and my grandfather, Papa Seth, operated a car dealership in Paulding for a number of years in the 1920's, so perhaps it was part of my genetic makeup.

bill of lading form saved from the garage

behind Aunt Bebe's house in Paulding

When I was small, my mother would take us on drives to the Independence Dam park outside Defiance in our green 1949 or 1950 Chevrolet , a rounded, large scarab-shaped car with bouncy seats. This is not the car, but it comports with what I remember ours looked like:

Independence Park (or what we called "the Dam") ran between the Maumee River and a remnant of the Erie Canal, in a direct line for many miles. My mother would put me on her lap and let me pretend to drive down this long straight road. It was thrilling.

The green Chevy was replaced by a duo toned station wagon in 1959, as the size of our family increased. Defiance had rapidly become a General Motors town following construction of the GM foundry there in 1948. That's where I first heard that Ford stood for "fix or repair daily." But my father bucked the pressure and purchased a Plymouth. Perhaps in deference to his father's and grandfather's Dodge dealership in Paulding all those years ago. I can remember sitting in the dining room on Clinton Street waiting for Dad to return from the dealership, guessing about the color of the car to help pass the time (white and tan). It was a big day for the family. Other station wagons followed, usually with a third seat in the back to accommodate our new additions, but they were never greeted with the same fanfare. By the time we moved into the house on Elliott Lane, my parents purchased a second car. This was a convertible, a car Dad had always wanted growing up, and now he could fulfill his adolescent fantasy. The car was his alone, and he drove it to and from work. It, too was a Plymouth and it was navy blue. When our house burned on Palm Sunday, 1967, the car perished in the garage--my father had run in and tried to start it but the steering wheel was too hot and he was forced to retreat and we watched it burn. The tires made large clouds of black smoke that brought in lots of gawkers who drove around our circle driveway, which I found most embarrassing and my parents were thoroughly pissed off by the invasion of their privacy in this terrible event.

Dad replaced the Plymouth convertible with a light blue Chevrolet with a white convertible top, but he did not have the attachment to this car that he did to his Plymouth. I loved it. I remember taking the Chevy out for a long run in the country by myself for as fast as I dared, in the spring of '69 (I didn't have the nerve to go past 70). However, this was not the first car that I ever really drove. And it involved my mother again.

When I was 14, Mom decided it was time to teach me to drive one sunny summer morning. Her father had taught her at that age back in Little Falls, MN, so she reasoned that I was ready to learn as well. We drove out to the country in the family station wagon, stopped the car and I slid over to the driver's seat. She got into the passenger side, closed the door, and I nervously put the car in drive and proceeded down a straight country road (they all are straight in that part of the country) bounded on both sides by drainage ditches and corn fields. Though giddy with fear at first, I relaxed a bit after a few minutes of going down the straightaway. "Turn to the right, up ahead," Mom ordered. When the car reached the intersection, I began to turn right. "You're not turning far enough," my mother noted. She reached over and grabbed the wheel and tried to place her foot on the car's brake pedal. Instead she hit the gas and the station wagon took off. Luckily, the drainage ditch that the car careened down was not very steep and we stopped once we hit bottom. I recall there was rather a lot of yelling, and then my mother took command of the wheel and tried to drive the car out of the ditch. It would not budge. We were stuck.

not the exact site, but this is the general appearance,

if you add deeper drainage on both sides

Now this was back in the days of no cell phones. Luckily there was a farm house not too far in the distance, so we got out of the car and hiked in the sunshine to the house. Mom knocked on the door and asked the woman if she could use her phone to call a tow truck. I don't remember what the woman looked like or what she said, because after she invited us in, the sight just took my breath away. It was my first introduction to serious hoarding. The hallway which led straight back from the front door was piled almost to the ceiling with empty boxes of cereal, tin cans and other boxes and crap. These piles were so deep that we had to go single file and watch our step so as not to hit anything.  When we emerged from that rabbit warren, we discovered the kitchen was not only overflowing with stacked rubbish but that the sink and surrounding counters were also heaped high, but with unwashed china, silverware, and pots and pans. It was interesting, to watch how my mother, a meticulous house cleaner who was far more fond of cleaning than cooking, held her tongue and charmed the residents of the house to use their phone. But once the call had been placed she declined their offers to stay and take refreshments, and we beat a retreat to the station wagon to await the tow truck. While we were there a police car drove by, and asked if we had been responsible for knocking down a mail box a ways behind us on the side of the ditch. I went over and pointed out to him that there was a clean cut on the pole holding the box up and had our car hit it, it would have been more jagged, so he let us go.  Good thing that, because my dad was mad enough for an entire police force when he heard the story that night.

I eventually took driver's education with someone who was not my mother, and in due time passed the tests and received my driver's license in the fall of 1968. I wish I could say that I only drove a car into the ditch once during my high school years, but, alas. Luckily my parents only knew about one of the two other incidents.  The one they knew about was my senior year in high school when we lived in Rochester, MN. I missed the turn downhill coming into out street after a big snow and plowed into the ditch. Luckily I had some friends who were in a car following me, who helped pull the car out, but it took over an hour to wrench it free, so by the time I got home I was really, really late (even though I was only three houses down it did not count) and I was grounded for a week or two.

I'm sure I would have been more than grounded if they had ever found out about the other 'ditch running' incident. The spring of junior year in high school back in Defiance, the senior class sponsored a road rally. To participate, you were given a set of cryptic directions which were supposed to lead you to the finish.  The directions also gave you the speed you were supposed to drive the car on each road. Your departure was timed as was your arrival, so the car closest to the ideal time won. I was driving the new Chevrolet convertible and at least two of my girlfriends, Candi and Sue, were with me to serve as navigators (Carmel and/or Kathy may have been in the car as well, but this was more than 40 years ago and memories are terribly fragile things). I forget who was navigating, but we got horribly lost because my navigators couldn't decipher the directions correctly. I figured we were way behind, so I was speeding down, yet again, another country road, exasperatedly trying to read the directions myself and I veered into one of those ubiquitous farm drainage ditches by the side. Again, there was a farm house nearby, so with hope springing eternal, the three or four of us went there. My heart was in the pit of my stomach as I anticipated my father's reaction to my newest accident. However, luck was with us that day, because not only was the farm very neat and tidy, the owner, seeing distressed female teenagers, volunteered to pull us out himself with his tractor and a chain. It was an incredibly nice gesture and actually quite common for that time and place. So, we lost the road rally (we actually turned in a time that was too fast), but I was saved from major parental wrath because there was no damage to the car, and Candi and Sue and whoever else was in the car swore a lifetime vow of silence.

Which, of course, I am now breaking. Luckily my mother, who is still with us, does not have a computer, or access to the internet.

CT scans update

2011-01-23T00:21:00.000-08:00

I heard from Dr. M about the CT scans of my brain and pelvis that were done on Thursday. They were required prior to entry into the clinical trial. Despite my fears, my brain CT was normal. The pelvic CT showed an ovarian cyst. I am assuming it is the same one that showed up on my PET scan and ultra sound back in Oct. of '09. Unfortunately the radiologist reading the scans did not have the benefit of those records because they are at Group Health and SCCA cannot access the records. So it is unclear whether I will have to have further tests to confirm that the cyst is non cancerous (which I think would be redundant), or worst case, whether I will be excluded from the clinical trial. I hope this can be resolved so I can start on the new therapy, as scheduled, for this Wednesday. As a champion worrier, however, I will be focused on the worst case scenario until it is ruled out.

I have been reading The Emperor of All Maladies, by Dr. Siddhartha Muhkerjee, and recommend it highly to one and all. It is a very readable history of cancer and its treatment, filled with anecdotes about the famous and not so famous people who have played a part in this Grand Guignol of medicine. Dr. Muhkerjee is empathic and tells very entertaining stories. My only quibble is that I don't think that either he or his editor really knows what the origin and actual definition of the word decimate is. But I am one of those picky individuals who does not think that the word impact is a verb, either.

My father's side of the family: Aunt Bebe

2011-01-20T00:11:00.000-08:00

I've written as much as I know or can remember from the genealogy on my mother's side of the family, so it's time to move on to my paternal roots.

My father's family was composed of the Fausters/Murbachs on his mother's side and the Cullens/Hustons on his father's side. I've a wealth of information about both sides first because this was the side of the family that I grew up with, and then I was lucky enough to claim or receive clippings, photos, and other mementos from both sides of the family after my Aunt Bebe's and my Grandmother's deaths.

My grandmother, Helen Fauster Cullen ("Grandmother"), and her sister in law, Bernice Cullen Sullivan ("Aunt Bebe"), were mainstays of my childhood in Defiance. They lived in Paulding, Ohio the next county over, across an alley from each other. We saw them several times a week, both when they visited us and when our family went to visit them. It was about a half hour drive one way, and one of my fondest young memories is singing songs in the car with my mother and siblings late at night, looking up at the stars, as we'd drive home to Defiance after having supper in Paulding with Grandmother and Aunt Bebe.

What I knew of my Great Aunt Bebe then, was that at that time, she lived in the Cullen homestead on North Williams Street in Paulding. It had a huge musty stone garage out back with a ceiling that seemed 25 feet high, where a number of old cars were always stored, covered with sheets. In between the garage and the back of house was a lovely rose garden with cascading trellises of red, white and pink blossoms that you could smell at the height of summer as you would wend your way between Grandmother's smaller house on North Main to Aunt Bebe's larger one south of there. Here is the Cullen house on North Williams that Aunt Bebe lived in, courtesy of Google maps:

In the house's living room was a shiny brown Chickering grand piano where Aunt Bebe gave piano lessons. (when she came to my piano recitals, she would always tell me that I had a marvelous 'touch'). In the living room and the dining room you could find antique floral china bowls set on side tables, filled with jelly beans or gum drops, which you could sample at will because Aunt Bebe was very indulgent, and she was quite fond of candy too. Also in the living room was a large television set, where, if you were spending Saturday night in Paulding, which I did as a child, you would watch Lawrence Welk. Grandmother and Aunt Bebe had been to see Lawrence Welk in person in California, and had actually danced with him! The accordion player, Myron, was my personal favorite. I thought he was quite handsome.

The main bedroom was on the first floor in the back, but upstairs there was a bedroom on the right hand front of the house that in addition to a bed and chest of drawers, had a mirrored sitting table with a cushioned stool, and a fainting couch that gave this room an air of the romantic. The sitting table had a silver tray that was crammed with old perfumes like Bal a Versailles, and in the drawers of the sitting table and the chest of drawers were boxes of costume and other jewelry, and linens and purses and gloves and shoes, all of which made it most exciting to sneak upstairs and snoop around, if you were a curious child like I was. It reminded me of to the dressing room pictured in the children's book, The Lonely Doll, which was popular in the 60's.

Aunt Bebe also had a large collection of cosmetics in both bathrooms--the master bath on the first floor and the upstairs bath. Beautifully bottled cleansers, lotions, foundations, mascara, it was a veritable cornucopia of many things I had never seen before because the only cosmetic my mother used was lipstick, none of these exotic concoctions for her. I wondered how they were applied, and if I got brave, even tried them on. But the foundation was too obvious and it took real dexterity to wield the mascara--something I would only later learn to do from high school girlfriends. So I was careful to scrub my face to hide my experimentation, although any perfume I tried was not so easily gotten rid of.

Downstairs in the basement, which had a damp, limestone smell, there was an old wringer washer and a mangle There were toys from when my dad and his sister were kids. We could take them out of their boxes and play with them, but first we had to safely navigate the steep narrow wooden steps that led down to the basement. Ultimately, they were simple toys that just weren't as interesting as our own toys, like Betsy Wetsy and Barbie dolls and the Mattel product whose name I've forgotten, where you would heat up colored plastic sheets then turn them on molds and suck out the air, leaving a figure you could paint or just cut out. And, eventually for me, the jewelry and cologne and makeup upstairs was far more alluring, so gradually I stopped venturing down into the basement.

Aunt Bebe was, to my childish eyes, an old lady with wrinkly, flaky skin, who smelled of old lady's perfumes like Royal Secret or Germaine Monteil, who loved to give hugs and kisses to her little ones. Looking back on pictures of the time, she was immaculately turned out in dresses and suits that were well made, with sensible shoes and matching handbags, but of course in my childish opinion, she was dowdy, as were most adults. Unlike Grandmother, she was Catholic, which meant that sometimes she went to church with us or we did with her. It was why I and my sister got to spend Saturday nights in Paulding, because she would take us to Mass on Sunday morning. She made it to all of our First Communions, and she and Grandmother attended our high school graduations, and most of the weddings.

my youngest sister's first communion, 1968

my high school graduation, 1970

Aunt Bebe, me, Grandmother, my mother

my sister's wedding, 1977

Her first visit to Hawaii in 1966

Aunt Bebe always drove a big ol' dark blue or black Cadillac with a rotating compass on the ceiling above the dashboard, and with a horn that sounded like several trumpets blowing. She liked to take Sunday drives with Grandmother out into the country and sometimes they took my sister and me. As they drove through the flat farmland of NW Ohio, and commented on the crops ("knee high by the 4th of July" is how they talked about the corn, I forget what they said about the soybeans) they would gossip about friends (Paul Eichling was the son of friends of theirs who had a number of run ins with the law and spent time in prison--I remember those conversations, with much sighing about poor Lois, his long-suffering mother), relatives, and current events, and I and my sister would peer out the back seat windows, and eventually drowse until we reached Charloe when we would get out at the road side restaurant and go in and have ice cream cones and look at the fancy juke box in the darkened corner in its red, iridescent glory.

Aunt Bebe was very soft spoken, and incredibly generous. She would often surreptitiously give me a couple of dollars, or better yet, pieces from her jewelry found in the drawers of her sitting table upstairs, that I especially coveted. Just rings. I was very into rings during this time, and I remember a pearl ring and a jade ring that she gave me on different occasions after I had dropped broad hints to her about how much I loved them. I lost the jade ring when I gave it to my boyfriend to hold while I was practicing for the powder puff football game junior year in high school. But the pearl ring became my engagement ring when we replaced the pearl with a small diamond. Aunt Bebe's generosity extended beyond us kids. I know Aunt Bebe, not my Grandmother, helped my parents purchase the property on which they built their dream house in Defiance in 1959. She didn't have any children, but she loved kids, so in a sense we became her grandchildren. And she made the very best watermelon pickles in the summer and cranberry ice as well as springerles at Christmastime.

At my wedding in 1980, it was clear the Aunt Bebe was not doing so well. And a year later, word came to me in Seattle that she was having episodes of dementia Once, to the consternation of Grandmother, Bebe had gone to her front door to get the mail from the mailman and was clothed only in her slip and skivvies. She, who had always been so fastidious about her appearance, did not realize she had forgotten to put her house dress on. Eventually she fell and broke her hip in the fall of 1981, and a week or so later, died of a heart attack.

I flew to Paulding for the funeral, a three or four day trip that was a revelation to me about her life before us kids, because Grandmother, my parents, my aunt and other relatives had an informal wake each night, with plenty of liquor. And with the lubrication, the stories started coming and coming from everyone there. I stayed up late listening to them and then writing them down. I also combed through boxes upon boxes of photographs, newspaper clippings, letters from relatives and friends from 1888 on forward, even report cards for both Bernice and Seth from elementary school on up. Turns out that my great grandfather, WH Cullen, who had originally owned the house, had been a great saver and clipper and Aunt Bebe kept his efforts intact. These mementos were a treasure trove that I devoured in the few days that I had back in the Midwest. From this immersion in family history, a far more complex picture of my Aunt Bebe emerged.

Bernice Marie Cullen was born October 28, 1893 in Paulding, OH to Lulu Huston Cullen and William Henry Cullen. She was the oldest of two children, the second being my grandfather, Seth Cullen (no middle name), who was born either on August 30, 1895 or October 8, 1895 (more on that later).

Seth Cullen and Bernice Cullen

As a child, Bernice had typhoid fever, which meant her hair was cut off by order of the family doctor. So, unlike most of the girls at the time, her childhood pictures show her with short hair, which darkened with age. Her father, W.H. Cullen, sold insurance when she was little and when Theodore Roosevelt became president, W.H, a staunch Republican, was appointed postmaster of Paulding, Ohio.

Elizabeth Crowell and Bernice Cullen

Bernice was a model student. Her grades were always in the 90s per her report cards. Both of her parents sang in the choir in the Methodist Episcopal church in Paulding, so she was surrounded early on in life by music and developed a deep appreciation for it.

Bernice Cullen, high school graduation, 1911

After graduation from high school, Bernice attended Ohio Wesleyan College in Delaware, Ohio. At Ohio Wesleyan, Bernice majored in education and music, and made many, many friends. One of the boxes of photos in the Cullen family home in 1981 consisted of 'Kodaks' that she had taken of her friends and classmates in the four years she was at Ohio Wesleyan. I didn't take any of them home with me to save. Unfortunately, my Aunt Caralou, took charge of cleaning out Aunt Bebe's house, which meant that these photos were burned rather than preserved, which shrivels my historian's heart to this day. One of the favorite pastimes outside the classroom were cotillions, or semi-formal dances where members of the opposite sex would show up and dance with different partners through out the evening. The women had dance cards, about the size of a credit card, which were small books which were printed on pastel paper with decorations in keeping with the dance theme. There was a set number of dances that were identified by genre such as waltz, fox trot and were placed on numbered lines in the middle two pages of the dance card. Often a small, matching pencil on a satin cord was appended to the dance card. The men would come by and write their names for certain dances on the cards of the women they were interested in, and the women were careful to try to save spots on their dance cards for the fellows they were particularly fond of. It was no surprise that Bernice's dance cards, some of which were in her box of college remembrances, were usually full.

Bernice Cullen, Ohio Wesleyan, 1915

Upon graduation from Ohio Wesleyan, Bernice went to King's Mountain in North Carolina where she volunteered and taught young black children. This was considered missionary work and was sponsored by her family's Methodist Episcopal church in Paulding. Her father had decided that it would be a good experience. However, it turned out to be a difficult time for Bernice--the strange surroundings coupled with the fact that this was the furthest she had ever been away from home created a deep homesickness in her. She also experienced the disdain of the white townspeople at King's Mountain for her work with black children. Bernice never overcame her homesickness but she did endure her year at King's Mountain.

She returned to Paulding, received certification to teach music in the public schools and taught in the Paulding area for the next seven years.

World War I intervened during this time, and many male friends and classmates from high school and college were drafted or joined the military. She corresponded with a number of them. I have three letters to her from James Burtch, a young man who worked for Bernice's father when he was the Paulding postmaster, and a letter from her brother Seth. They are on light weight paper with American Expeditionary Force printed at the top of the pages, and bear the stamp of the censor, so they were read by the US military before they were posted back to the US.

The three letters from "Jas" were written in February and March of 1918. According to the return address on the first two letters, he was in the 48th Aero Construction Squadron.

Here is his first letter dated Feb 4, 1918:

Dear Bernice,
Received your letter last evening and it sure touched the right spot, for I have not heard from you since I left the U.S. Sorry to hear that you are working so hard for that is one thing that I am not doing. Am having one grand time, and while I'd like to be back in the States, still I am going to enjoy my self as long as we are over here.

We are having fine weather, and when I think of the weather you must be having over there, I am not so sorry that I am here. Had one fine time a week ago yesterday. Six of us were under quarantine and while we were not allowed in the city, still we could tramp all over the country, and we did. And some of the sights were beautiful. We were through the remains of an old cathedral that was built in the sixth century, and while most of it has been destroyed by war and weather, still there is enough left to make it very interesting to us. Yesterday my pal and I were in the city all afternoon, visited an old cathedral there that took three hundred years to build. It is a wonderful piece of architecture and is a credit to the country, according to the most of the buildings [sic]. We went in to take some pictures but it was to cloudy so we didn't get to take any.

Am enclosing a little souvenir of France in this letter. It isn't very much but it's a souvenir just the same. I sent one to Bea, and it got through alright, so I'll take a chance on another one.

the souvenir enclosed in the letter, a hand embroidered silk handkerchief

...We get a ten day furlough after we are over here for four months. I will have my four months in the 13th of this month and as I have been working so very, very hard I think I'll take mine, and have a good rest. They have a big rest camp over here, and every thing is free to us soldiers, even transportation to the place. Tennis, base ball, golf, picture shows, automobiles, horses to ride, etc, etc. Oh it's a great life if you don't weaken...We are still a good ways from the front, about 200 miles, but are all hoping to get closer ever day. This kind of life makes you lazy and it gets very monotonous some times. However, we expect to go up in about a month or so, then we'll have some real life...

How is Seth? Tell him he missed it by not coming with me. He could be driving a Hudson super six over here and having a real time. Tell him to write to me, and give me some news. I don't get any news anymore, since Bruce and I separated. He always got lots of the mail from all the girls, and of course I got to read some of them.

Your letter is the only one I have received from the feminine sex, outside of Bea and Butba [sic]. I guess that's one reason I am answering it so quick. Some very pretty little French girls over here, but I can't see them when compared to our girls at home. You should hear me speak French. It's more fun than going to a musical comedy. We will all be regular Frogs when we get back.

Now have Seth write me, and above all, don't forget to write your self, for sure did enjoy your letter. More than any I ever received from you. I guess I understand some how you felt when you were in Carolina that winter...Sincerely yours, Jas.

The second letter I have is dated March 3, 1918. Here is the first page. The stationery is army issue:

The letter continues:

...We had moving pictures three times at the "Y" last week, also a talk on the Invasion of Belgium. Some lady from Toledo, Ohio, that married a Frenchman, and was living in Belgium at the time, made the talk, and it sure was interesting. After hearing it one wonders whether we are at war with human beings or wild animals. I always thought a lot of that stuff was imagined, but after hearing her talk, and seeing the documents she has to prove her story, I can believe anything I hear now. Is there any chance of Seth going in the next draft?...I have wished a lot of times that Seth had come with Bruce and I; I think we have the best organization in the army and I don't think we will ever get closer than 30 or 40 miles to the front...Think I'll go to church tonight. I haven't attended services since I joined the army, just think of it. I had quite a nice letter from Bro. Weaver the other day, and he asked me to use my influence to get you to go back and play the organ So you see what he thinks of me. You should read the letter I wrote to him: for heavens sake don't tell him I haven't been to church for 7 months: for from the letter I wrote him, he'll think I own the "Y.M.C.A." over here. That is what you should be doing, Y.M.C.A. work. Your folks object to your working, they should see the women in England and France in overalls doing mens work. I'll tell you it looks pretty tough, but they have to live and the work has to be done...

The last letter I have from James to Bernice is dated March 19, 1918, and received in Paulding on April 15, 1918. He wrote:

Just a line or two this evening, in answer to your long and very interesting letter of last week. Am still numbered among the living and feeling fine. The weather is again fine, altho it looks some like rain tonite. I suppose it will rain tomorrow, for I wanted to take a long tramp. I haven't been out on a jaunt for three weeks, and had decided to go tomorrow so I suppose it will rain. Wish I could have been there for "The Cabbage Patch." I always rather enjoyed things of that kind. There is plenty of chance for a fellow to show his talent over here, but when one handles a shovel or pick or hammer or axe all day, you feel like resting at night. I have been working with a civil engineer all week: helping lay out a range for machine gun practice. We have some "Chinese" coolies to do the heavy wok [sic]. We are going to get some pictures of the "gang" next week. Think I'll have some to send you in my next letter.

When I read that you were trying to get "Fischers" for a dance, I had all I could do to keep from coming over for it. I spoke to the C.O., but he thought I had better not leave just now: So I won't be there for it, but if you have a big dance on Thanksgiving eve "1920," I'll try and be there for it...I heard the other day that all of us enlisted fellows in the Aviation section, would get a chance to fly if we cared to. It's an awfully fascinating game and I'd sure like to try it, and I think I will if I get the chance and can pass the examination. All of the fellows went crazy when they heard the news.

Sec. of War Baker, and Gen Pershing were thru here the other day, but I didn't have a chance to talk with them, so I didn't get their opinion of the length of the war but I think they think some thing like I do. Remember me to all the Cullen family and tell William I am going to write him sometime soon. Sincerely yours, Jim. Our squadron number is now "462."

During this same time, Bernie, as she was known to her friends, also had a flourishing correspondence with her college girlfriends. I didn't save these letters but my notes reflect that the women wrote about getting married, or hoping to be married soon. Like alumni of any era, they bemoaned the changes they saw at Ohio Wesleyan since their graduation--students didn't seem to have as much fun. One girlfriend even wrote reminding her about all the times they used to sneak out of the dorm at night with a flashlight! Another described to Bernice how dull dances were in Baltimore because the folks there only danced with simple, straight ahead steps, not with some of the fancier, more flashy steps they had learned in college in Ohio.

After the war ended, the men came home and the social life picked up in Paulding. During this time, despite having many male friends and admirers, Bernice eventually narrowed the field to Michael Leo Sullivan of Payne, Ohio. This did not occur without some heartbreak from at least one other suitor, Harold Stafford, or "Staff." He wrote to Bebe in 1919 from Detroit:

                                                   Saturday
                                                                                                 Sept. 6
Dear Bernice,

I've been sort of neglectful haven't I in not writing you sooner. I spect you were most worried to death about my reaching home safely. Well I arrived all O.K. I haven't started to work as yet but expect to about the first of the week. I suppose you're putting in terribly busy days at the office, eh? My I wish I could drop in and talk to you awhile each day. I miss those little talks a lot.

One of my chums entered my name in a tennis tournament so I'm playing in that. It began the day I got home. Seth insists that's why I went home but I swear I didn't know when it was to begin. I won my match in the first round as you will see by the clipping I'm enclosing. I also won the first set of the second round but had to stop last night because of darkness....

Say Bernice have you and "Mike" made up your little differences yet? I hope so. I thought maybe I'd see you at he dance that night but I guess you were pretty busy making up, eh? I was "kinda" disappointed 'case I could have that "date" with you 'stead of Mike but it was best after all I guess. Golly Bernie I wish I was about three years old, with your permission I sure would enter the race for your hand and fortune. I never really knew you till this time and believe me I'm a staunch admirer. Now Bernie please don't think me silly or foolish will you for talking like this. But there are so few girls like you a fellow can't be blamed for liking you so very very much. But let's your and I be the very best of friends, I want it and I hope you do. you did me a heap of good this time Bernie and I guess I cause you a wee drop of trouble. if I did I'm certainly sorry and hope everything turns out all O.K. But please lets be the best of friends, my own sister, eh? Say Bernie you had better insert at least two (2) pairs in those blanks or more if you think you are going to win. And say you forgot to tell me the size to get if by the slightest and improbable chance I should lose. So kindly forward the size. I haven't forgotten your Martha Washingtons. It's been quite warm up here and I was a little afraid they would melt and reach you in bad shape which would be a terrible calamity. Just as soon as we have a little cool spell they will be on the way to you.

Gee I didn't get to buy you that candy Monday after all which was another disappointment.

There aren't any real good shows playing here just at present altho I did see a good vaudeville bill at the Temple yesterday. The Michigan football schedules aren't out as yet but as soon as they are I'll send one to you so you can pick out the games you would like to see best. Now Bernice you haven't changed your mind about coming have you? Please please don't. I've told the folks all about it and we all expect you and are planning on what all we will do while you are here. Mom is going to write you a letter all about shopping here and everything so please please don't put off coming will you. If you do I'll come down there and bring you back by force, Mike or no Mike. So please plan on coming. Now take good care of yourself won't you. Remember me to your father and mother please and to Mike that enviable gentleman adorned with four leaf clovers and rabbit's feet. Also take good care of that baby [Aunt Caralou, probably] and make Seth take care of himself. I spose Helen is home now so you will have company in the office. I wish I could be there to go to the fair with you. Well be useful and take good care of yourself please. As ever your friend.
                                                           Staff

Bernice and "Staff"

Despite the other suitors, Mike Sullivan was handsome, charming and persuasive when he wanted to be. And patient. Mike was one of 5 children in an Irish Catholic family. According to Grandmother, Mike and Bernice had a stormy courtship because although Mike was extremely charming at one moment, he had a chimeric personality that could shift instantly and he would be a 'devil' the next. When they were courting, Mike would take two of his younger sisters with him or Bernice's niece, Caralou (my Aunt) who was a toddler, to keep things on the 'up and up.' Aunt Caralou told me she both liked and hated these times because Mike inevitably produced a huge box of chocolates which came with a pair of tongs to pluck them out. But after the chocolates were gone, it was sheer boredom for Caralou and the Sullivan girls because Mike would have put them in a little back room so he could have some time alone with Bernice and there was nothing to do or play with.

The only picture I have of Mike Sullivan with Bernice

Mike's father, John Sullivan, favored his older brother, Cletus to the point that when John died early and unexpectedly, his estate was left entirely to Cletus, as long as he cared for his mother and 3 sisters. But more often than not it was Mike who took care of them and who worked the hardware store in Payne.

In 1923, 8 years after graduating from college, Bernice consented to marry Mike. She had to convert to Catholicism to do so, which caused some heartache in her strongly Protestant family, but her parents did not abandon her and neither did Seth or Grandmother. Once married, the Sullivans moved to Payne to set up house. Shortly afterwards, tragedy struck when the stove in the kitchen exploded, burning Bernice's face very badly. Luckily the doctor who was called to attend her had been hunting the day before and had some deer tallow on hand which he used t coat her face. He credited the deer tallow with healing her sufficiently that she did not have any visible scars. But it took a while. For a long tie after the explosion, she had to wear huge bandages that entirely covered her face, all but her eyes. And although no visible scars remained from the accident, she lost all of the oil glands below the skin on her face, and for the rest of her life had to apply prepared oils and emollients onto her cheeks, chin, and forehead on a regular basis, even to the point of having to get up once or twice every night. Which for me, helped explain the large collection of cosmetics and her dry skin that had left such a deep impression on me as a child.

Bernice's married life was stormy by all accounts. Mike became a raging alcoholic and was abusive at times. Grandmother recalled several times Bernice showed up with black eyes which she attributed to running into door frames. But it was very well known about Mike's drinking and his temper. My father told me a story maybe 20 years ago, about how when Dad was a little kid, Mike was sent over to Indiana to pick him up and bring him and another friend of Dad's back home to Paulding. Mike stopped at every bar on the way home for a drink, leaving the boys out in the car. As his stops increased, his driving grew so erratic that Dad and his friend crawled under the back seats to protect themselves in case of a wreck. I think that was the last time Mike was entrusted with that responsibility.

But Mike had his good points too. He was extremely generous with Bebe and his mother and his sisters and to many others. Once he picked up a Hungarian family he found in the road. They were destitute after arriving in the US after WW2. He put them up in a 2 room house across from where he and Bernice lived and helped them get a start on life in the U.S. Mike managed the hardware store in Payne, and eventually Bernice joined him and did the books, something she had learned to do while working in the office of her father's various businesses. Mike died in 1949, probably a result of his alcoholism. After his death, Bernice took over and ran the hardware store in Payne for a number of years, but eventually she sold it and moved to Paulding to care for her ailing parents and when they died, she stayed in their house on North Williams Street for almost another 30 years. Though she had been married to Mike for over 25 years, I cannot recall seeing a single picture of him displayed among the many family photos that Aunt Bebe had on her walls and side tables in the Paulding home.

MSN email disaster

2011-01-16T11:07:00.000-08:00

For the past month, my email via my MSN account had been behaving weirdly. New messages were not coming through and those that were there, I could not open. I had to go to hotmail and open my email there which was a pain in the butt, because not all my email folders were available or accessible there. So apologies to those I have not responded to lately. This is the reason behind my failure to reply to your notes.

Two or three weeks ago was the first time I called Qwest about the problem. This is the first step in a torturous process that can take hours of on phone time. I'm sure some of you had similar experiences. Usually it was just time that I wasted. Now it was money as well because I had given up my land line in October in a now-seemingly futile gesture to save money. And after waiting on they phone with Qwest, they referred me to an MSN technician. He told me my MSN mail account needed to be resynched and gave me the directions to do so ("CTRL + W" to exit out of MSN mail; "CTRL + shift + F9" to strip out all the MSN folders on their server showing on my computer. Once I restarted the computer, the folders would pop up again, this time in sync. So I followed his directions, waiting for some time for the clearing to take effect before turning the computer back on. It worked--my email box filled up with mail and I could send emails as well.

Last Monday the old problems with my MSN mail account returned. I spent the week accessing my email on hotmail and curtailing my correspondence as a result. Yesterday, I called Qwest, to try to get to MSN to fix it again, Seven phone calls and three hours of my life that I will never get back, the MSN mail account is receiving mail but most of the emails I had saved--correspondence from friends and family, business transactions, tax information, among other things, are gone.

The first call Qwest took about a half hour to put me in touch with MSN. Then it was another 15 minutes for MSN to transfer me to a 'resolution expert.' His name was Venkat. We tried the prior fix and it did not work. Then he asked for permission to access my computer. I agreed and had to go through a number of steps to grant him access. He told me it would take a while, so he would hang up and call me back when he had figured out the problem. I appreciated that and agreed.

MSN mail is stored in two different places, on the MSN server (where all received mail goes) and on your computer's hard drive (where all sent mail is stored). You can create additional subfolders within each folder, which is what I had done. But, because about a year ago, I had lost email on the MSN server when another fetid internet burp occurred, I transferred over half of my created subfolders to my hard drive. These were subfolders titled things like "bank and taxes," "Defiance," "friends," "Macalester." Into those subfolders I had placed emails. A lot of emails. Probably over a thousand.

About a half hour later Venkat called and said that the problem was centered around the fact that I had created email folders on my hard drive and saved emails to them. This had caused the MSN mail to go out of sync. What he could do is create a subfolder on the MSN server and transfer the emails stored on my hard drive to that subfolder. I agreed and watched as he typed and placed the subfolder on my MSN server: "storedemails." He said it would again take some time and he would call when he was finished.

Another half hour went by and Venkat called again. I went online and watched the emails that had been blocked from showing up on my screen came popping up. It was mesmerizing. Venkat asked if there was anything else he could do and I said no, that was great. I disconnected the access and waited for the emails to stop coming in. It was only after that, that I saw that the folder "storedemails" was not showing up on my screen as part of my MSN server collection. After a half hour of searching my computer, I started calling Qwest again. It took 6 phone calls and another 2 hours stretching between 6 pm and 1:30am last night and this morning to finally get through to an MSN resolution expert (all but one of the calls were dropped either by Qwest or MSN after 15-30 minutes of waiting each time). The MSN resolution expert told me that all of my sent emails and all of the emails that I had so carefully saved on my hard drive were lost and not recoverable.

Now this is not a tragedy along the lines of losing something like William Faulkner's correspondence, but it was my correspondence with friends and business records that I saved for tax purposes. Many email addresses of friends that I had not formally saved to my address book were also lost. Writing via email is the main way that I stay in contact with folks these days given that my voice is so tenuous. I am, as a result, feeling a bit bereft today.

New Directions

2011-01-06T11:21:00.000-08:00

I met with my oncologist at Seattle Cancer Care today. As a result of our discussion and following a review of the 29 page consent form (for which I was very glad to have friends Diane and Anne there to help with that), I have signed up for a trial. The drug is Protocol No. CA2100001 (MDX1105-01), sponsored by Bristol Meyers. It operates by freeing up the body's immune system to fight the cancer. My physician said that initially he was sceptical about this idea/drug but 2 out 3 of his patients that he's enrolled in the trial have had substantial success. And although that is not statistically significant overall, he thinks it portends well for me.

It doesn't matter if I am EGFR negative and don't have the ALK arrangement for this drug. I need to have a brain MRI to establish that there are no brain metastases and an ECG to assess my heart's condition, but assuming I pass those tests, I will be enrolled in the trial, which consists of administration of the drug intravenously every two weeks.

So fingers crossed. Side effects include diarrhea, joint pain, rash, and other autoimmune reactions, but I will be closely monitored. Nothing is for certain in life, but my experience as a lab rat will hopefully help in the development of effective cancer treatments.

Hanging Fire

2011-01-05T09:32:00.000-08:00

I had my latest CT scan early Monday morning. In the past, I usually have received the results the same day, even if a bit late. Not this time, despite an email request to my oncologist. Of course, this only makes my mind go into overdrive, worrying about what the silence actually means. I have an appointment on Thursday preparatory to beginning chemo again (remember 3 weeks on, 1 week off), so I am sure that I will learn the results then. However, I'd prefer to know beforehand so I don't burst into tears at the doctor's office, if the news is bad. Just hate to display emotion in that context.

postscript: two of the tumors have grown from October. The increase is "not dramatic" but the radiologists are convinced that there is growth. Will learn tomorrow what the options are.

A Season of Giving

2010-12-27T09:38:00.000-08:00

This year we did things a bit differently at my house. The kids received one gift plus fun things in their stockings. It worked out really well for me because my wrapping chores on Christmas eve were substantially reduced. I received wonderful gifts from them. But what I'd like to share with you are the engravings that my youngest son made for one of his art classes. They, to me, are absolutely wonderful.

River of Beer

Self portrait

Snow fantasy

Nike

I hope your celebrations were festive and rewarding and that the New Year brings joy and contentment.

Whistling past the graveyard

2010-12-21T08:31:00.000-08:00

The food disposal gave up the ghost last night.

Another Sunday

2010-12-19T23:41:00.000-08:00

The basement is drying out. Slowly in parts, but it has not flooded again, thank goodness. We've even had sunny weather several days. Which is unusual for the upper left hand corner of the map in December.

Unfortunately Sundays seem to have become synonymous for disaster in my small world. Today I returned home after church to find Scooter, my 7-year old dachshund, in considerable distress. He was crying and quivering. I took him outside to see if his bladder stones were back but urination was not the problem. He could not shake his head without yelping in pain. So I called my regular vet, who was booked for the day, and then bundled him into the car up to the Emergency vet on 15th NE and NE 148th. 2 hours later (several more urgent cases came in at the same time), it appears that Scooter may have a herniated disk in his neck. When the vet palpated his back, he was fine but when she moved his head down and to each side, he cried out loudly. So tomorrow after chemo, or Tuesday, he will be going to his regular vet to be sedated for xrays to hopefully conclusively determine whether there is disk herniation and the extent of it. He's on three pain medications/muscle relaxants and complete bed rest for 4 weeks. Which means he must stay confined in a kennel most of the time, and be carried outdoors to do his business. No walks or tearing around the house with Truffle. We're trying to get the inflamed area to quiet down and heal itself without surgery. He is also banned from wearing a neck collar for the rest of his life, just like Max.

It's very difficult to confine him to the kennel which has been brought in from the garage, cleaned up and placed in the dining room, because he thinks he's being punished and so he whines. Loudly and constantly. Occasionally Truffle joins him in the pity party from outside his prison, while Max paces back and forth in concern. I may have to resort to wearing earplugs in the house. How festive.

Fingers and toes crossed that we can make it through this latest test of our holiday spirit.

Here are the dogs this summer in a happier time, courtesy of my son's camera which has a video component. It is mainly Truffle, but Scooter is a constant presence and Max shows up at the end.

When it rains it pours

2010-12-12T21:52:00.000-08:00

We've had a very grey and soggy winter thus far in Seattle. Yesterday and today it poured, even by Seattle standards. In fact, according to KING5, Sea Tac recorded a new daily maximum of 2.20" of rain today. 35th Avenue NE, the main north/south thoroughfare by my residence, was closed this morning because water from the creek, a half mile north of me had overrun the road.

What this meant for me, was that my youngest son texted me at church to inform me that the basement had flooded. Up the hill next door to my house, are two Hong-Kong size houses that went up 3 or 4 years ago. This, plus the unusual deluge of rain this weekend, may be the genesis of the small geyser that was bubbling on the floor in the central part of my basement this morning. My youngest son went on the roof to clean out the gutters just in case, and I trenched around two sides of the house to try to relieve some of the water pressure. Fun stuff to do in your church dress and dress boots....Then friend Anne and friend Spot brought towels, an extra mop dry vac, and some fans and we went to work inside. Several hours and no rain later, the geyser has become a trickle and the towels (3 loads of them washed and dried thus far) seem to be soaking it up well.

It looks like I may need some serious basement drainage work done. Like Scarlet O'Hara, I will think about that tomorrow. Or maybe even later as I have chemo tomorrow.

Or, perhaps I could modify my oldest son's engineering school robot project to soak up the water instead:

Elizabeth Anania Edwards 1949-2010

2010-12-07T22:48:00.000-08:00

This is how I choose to remember her.

She loved deeply, and because she was the more intelligent of the couple, she knew where the real priorities in life were. She wrote a moving eulogy for Tony Snowe, George W. Bush's press secretary. I recommend that all of you read it because it says a great deal for us and about her generosity of spirit in these polarized and grossly politicized times. I am profoundly saddened tonight.

Scene at Safeway 11/20/2010

2010-11-21T00:13:00.000-08:00

Mom (to 5 year old son): "Come on, you're in the way of that lady!"

I smile down at the little boy.

Son (to mom): "That is not a lady. That's a man!"

I can see one of my sons saying the exact same thing at the same age.