Into the clinical trial

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

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

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

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

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

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

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

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.