Friday, August 27, 2010

Chemo Update: End of Third Round

I had my third  paclitaxel infusion for round three this past Monday at Seattle Cancer Care.  This coming week is my week off chemotherapy, although I have a CT scan scheduled for Friday September 3.  Dr. M. recommends CT scans every two months at this point to ascertain the status of my lung tumors.  Hopefully the neck tumors remain non existent.  Medicine considers a 30% reduction to be success in this regard, but as long as the tumors do not grow, I will be content.

I continue to be free of neuropathy and nausea.  The fatigue seems greater this week, but perhaps it is in part due to walking around Greenlake twice on Tuesday!  My church friends have been so kind, coming by this week to walk my dachshunds for me, but given my decent energy levels, I think it's time for me to step in and take charge, except for chemo days. 

Max, my older black lab, continues fairly well, particularly as the cooler weather has helped his breathing.  The operation to tie back one of his paralyzed vocal cords would cost between $2-3,000, so for now, I am going with leaving well enough alone.  He enjoys his smaller walks, and it's hard to explain to him why I don't throw the ball anymore.  But he is a patient, kind sort and he doesn't hold it against me.  Which is why dog is 'god' spelled backward.  If only I could be so good.

Notes on a name

It has been a bit of time between posts.  As summer draws to a close, I have been busy with visitors, repairing the back deck and simply trying to balance work, chemo and all of life's many other aspects. 

I received an email from a friend inquiring about my 'real' name.  It is confusing.  When I was born, as the first child, I was a compromise baby, named for both grandmothers:  Helen and Regina. 

Helen Regina and Barbara Jean, Denver, 1955

Helen, my father's mother, got pride of place but my mother insisted that I be called "Gina" a diminutive of Regina, her mother.

Helen Fauster Cullen             Regina Werner Holst

It makes it difficult when you inform your teachers every first day of school that, no, you do not go by "Helen" but rather "Gina."  By the time I graduated from law school, I decided that Regina sounded more formal and lawyer like and went with my full second name.  Friends from my early years know me as "Gina" while those in Seattle know me as "Regina." 

It turns out that I was not the first compromise baby.  My Aunt Caralou was named for her two grandmothers:  Cara Murbach and Lulu Huston Cullen. 

Caralou Cullen Chapman

I don't know much about Lulu Cullen, other than that several family friends wrote on the occasion of her death, about what a sweet voice she had singing in church.  Her daughter, Bernice Cullen Sullivan, my great aunt Bebe, taught piano lessons in Paulding, so it seems that the gene for music descended from the Huston side of the family. 

Lulu Huston Cullen       Cara Murbach Fauster

Cara Murbach was the sister of Edwin and Clarence Murbach, who I've written about before.  Her husband, John Ulrich Fauster, probably met her when he was practicing medicine with the Murbachs early on in his career, in Archbold, OH, although it was a family story that the Murbachs and the Fausters emigrated from Switzerland in 1854 together.  John U and Cara Fauster moved their growing family to Paulding, OH where Gramps practiced for a number of years, helping start the Paulding Hospital, before he moved the family to Defiance, OH.  Cara had no illusions about her appearance--on the back of the above photograph--which she sent to her son-in-law, she wrote, "Dear Seth, Don't let this picture give you the blues.  It's some chromo don't you think!"  However, she was an appealing young woman and her children adored her throughout her life, which ended far too soon in 1938 from a heart condition.

young Cara Murbach

Friday, August 20, 2010

My other High School reunion

This weekend is the 40th reunion of the Lourdes High School class of 1970 in Rochester, MN.  Although I grew up in Defiance, OH, I graduated from Lourdes. 

My family moved to Rochester, MN, in the summer of 1969, when my father was accepted for a two year residency in anesthesia at the Mayo Clinic.  He decided to become an anesthesiologist and leave pediatrics behind after he had a serious disagreement with his uncle, the head of the Defiance Clinic.  Although there were offers from families in Defiance to keep me and let me complete my senior year at Defiance High School (which I really wanted to do for many, many reasons, one of which was we were moving into a brand new high school that year), my parents determined that the family would not be split up and all of us kids would go to Rochester. 

I was in Germany when the family packed up and moved to Minnesota, so I didn't arrive until August.  At that point I had a choice in high schools.  I could go to the public high school, Mayo High School, or I could enroll in the Catholic high school, Lourdes, which was in the center of town.  Mayo was a new building and probably twice as large as Defiance High School was.  I felt very intimidated by the size and by the students attending.  In contrast, Lourdes was a quarter of the size--the senior class was less than 150 students.  I thought I might have a better chance to meet folks and make some friends in a smaller environment. 

Lourdes turned out to be the right choice for me.  Despite some adjustments, e.g. to the school uniform and to sex segregated lines in the school cafeteria, the students at Lourdes were kind and I didn't feel soalone after the first few weeks.  Sue and Barb became very close friends over the course of the year.  Bill Mc introduced me to real Chinese food, which was a revelation because the only Chinese food I had ever eaten prior to that was cans of Chung King at home. And I loved going out with Mike in his Renault Dauphine.

Lourdes High prom 1970

I tried out for and was accepted into Triple Trio, the girl's singing ensemble, and at the end of the year when the school newspaper staff (which had been composed of junior class members) fizzled out, I was delighted to jump in and participate in the last issue.  Last but not least, I joined a Junior Achievement group sponsored by the local television station and we produced half hour live television shows.  I think we made two or three. The first was a Dick Clark teen dance with a way cool for the time, revolving mirror ball,  and the last show was called "Youth in Action," highlighting volunteer work that teens were doing in the Rochester community.  I even participated in the Miss Minnesota Junior Executive contest, as the Rochester contestant.  This was was the Junior Achievement's version of  Miss Minnesota minus the swimsuit and talent competition.  I was selected as first runner up, but because  they announced the runners up in alphabetical order, mine was the first name called.  I still have my trophy, however, which sits proudly out in the garage.

I even went to two proms senior year--at Lourdes and at Mayo.  One was on Friday night, the other Saturday night.  I recall that at the Mayo prom, I wore my white prom dress but at dinner I spilled some thousand island dressing on it.  I thought I had done a good job getting the stain out but when we got to the dance the illumination was almost entirely from black lights, which really brought out the white dress, except where the thousand island dressing had been.  I kept my hands glued to my stomach throughout the dance. 

Mayo HS prom 1970

My photo made it into the Rochester newspaper when I was named a National Merit semifinalist.  I am pictured below with other semifinalists  from the two public high schools in Rochester, wearing my Lourdes uniform--a navy pleated jumper, white shirt and navy sweater.  Boy did I get tired of that by the end of the school year. In fact, it took decades to voluntarily wear white shirts.

I was such an earnest a young lady in high school that after senior skip day, when we were threatened with losing membership in National Honor Society unless we made up the day we skipped.  I made it up after graduation was over!

The combination of moving to Minnesota and receiving the National Merit award was the fork in the road that took me to Macalester College.  I am sure that the high school guidance counselor in Defiance would not have heard of Macalester, nor would she have known that the college's principal benefactor, DeWitt Wallace of Reader's Digest, paid the tuition for National Merit winners to attend Macalester. 

My senior year was different from what I had imagined growing up. I recall  lonely times, wishing I could be back in Defiance, but overall, it was an education in more than just scholastics.  Ultimately it worked out just fine, which these days I think is the best outcome one can have.  Besides, I loved the Lourdes unofficial drinking song:

Lourdes High Drinking Song

Cheers, cheers for old Lourdes High,
You bring the whiskey, I'll bring the rye.
Send the sophomores out for gin,
And don't let a sober freshman in,
oh no, no,
We never stagger, we never fall,
We sober up on wood alcohol,
While the loyal faculty
Lie drunk on the bar room floor
Ba da da da (repeat ad nauseum)

Go Eagles! I hope the reunion is a great affair.  Maybe next time....

Tuesday, August 17, 2010

As some of you may have noticed, I added a website to my favorites this morning. (listed as "Grace") is, in its own words:

GRACE is a nonprofit organization that we developed out of a commitment to improve the care that cancer patients receive by teaching patients and their families about their cancer and the best treatments. We can conquer the fear of the unknown by providing expert answers to questions directly from cancer patients and their families. Even with good oncology training, a general cancer physician can’t be an expert in every type of cancer. We don’t intend to replace your doctors - instead, we are experts in our own specialized corner of oncology, and we spend much of our lives on a narrow focus of a particular cancer. Now you and everyone who needs it can have free access to the latest information from experts on a particular cancer or aspect of oncology care. In addition to information about different types of cancer, we’ll provide expertise on topics that cut across cancer types, like radiation oncology, oncology social work, and complementary medicine.

While there is other information on the internet, this isn’t a static site with vague recommendations written by committee. We haven’t found there to be any other source for constantly updated, interactive, and expert-mediated discussion of the details of cancer management.
GRACE stands for "Global Resource for Advancing Cancer Education." It was begun by Dr. Jack West at Swedish Hospital in Seattle, and it  has a number of selected experts in the field of cancer who participate on the website from cancer centers across the U.S.

Cancergrace also hosts webinars, where you can phone in and listen to oncologists discuss topics of interest and email your questions to the panel.  At present Cancergrace focuses on lung cancer, which makes sense given that 219,000 people in the US are diagnosed with lung cancer each year, and 166,000 die from this.  However, there is good basic information about cancer, chemotherapy and radiation therapy in general on the website as well, and Dr. West has promised that with increased support, the information provided to the public should increase. 

So let's talk about support for  I found this website earlier this year and it has been a lifeline for me where I've obtained information on my condition, diagnosis, and possible treatment alternatives that my treating doctors either did not know or did not have the time to explain it fully to me.  And the best thing about this site is that anyone can join and participate in the discussion and learn about what is a very complicated and terrifying disease.  The more you know, the less you have to fear.

So I have decided to do a fundraiser for Cancergrace this fall.  My office wanted to show their support for me and asked if there was a charity that I would like to designate.  And given my love of the internet, and the very open fashion with which cancergrace provides information and education to all who need it, it made sense to designate this wonderful website as the focus for the fundraiser.

So, here's the scoop.  On the evening of Saturday, Oct. 9, 2010, the rock group, the Approximations (9 attorneys and other professionals who love rock music, and supporting good charities) will perform at the Palladium at Hale's Ales on Leary Way between the Fremont and Ballard neighborhoods.  Times will be supplied later, but I hope that all of my friends in the Seattle area, and even those from further away will show up to dance, drink a few brewskis and donate to a fabulous cause.  Stayed tuned as we work out the details.

The Approximations

Wednesday, August 11, 2010

Paclitaxel Round 3

Started my third round of chemotherapy on Monday. Note to self:  do not drink champagne the night before....

Still my blood work was in the normal ranges and Dr. M. was astounded that I had a full head of hair left, albeit an inch long.  He said I am the first patient that he has had who has kept hair through this kind of chemotherapy.  So, I guess that means I am special.    =(;  )

He also found no inflamed nodes in my neck upon palpation which he said was a very, very good sign.  His longest patient on this chemotherapy went 24 rounds.  My daughter said, "We'll beat that."  So there you are. 

My two (former) sisters in law came to the Seattle Cancer Care Alliance between appointments on Monday to see me, and it was a wonderful, wonderful reunion.  They are just absolutely special people.  And as I told them, our families go way back together--before we were even born.  Their maternal grandfather was the minister of the German Reformed Church in Archbold, OH, where my two great great uncles, Clarence ("C.F") and Edwin ("E.A") Murbach were doctors.  The Murbachs, from my family's accounts, were members of this same German Reformed Church.   The following are pictures from a book of photographs my grandmother Cullen (whose mother was Cara Murbach Fauster)  kept when she was a young girl.  The notations on the photos were made by my grandmother.

Edwin Murbach's home in Archbold, OH
Edwin Murbach and his son, Edwin Jr who also became a doctor
Clarence Murbach post medical school
        Clarence Murbach college   (I think he's quite handsome) 

The minister, Reverend "H", his wife and their three young children were driving over a blind train crossing outside Archbold, when they were hit by a train.  The wife and one of the children were killed immediately, while Reverend H lingered for about two years.  I am certain that the Drs. Murbach probably tended to him.  The two surviving children (my former mother in law and her brother) were cared for by the church parishoners in Archbold until their father died, when they were sent to live with  family members in other parts of Ohio, my m-i-l going to Cleveland and her brother going to New Philadelphia, OH. 

My former mother in law, who must have been no more than 6 or 7, was given a quilt inscribed by the church members to remember them by when she moved from Archbold.  Which is a tradition that has carried down the years--witness the  quilt I was gifted with last fall--made and signed by my own church family as I started my own journey.  It was serendipity to discover how this tradition has continued from one century to the next.  Color me amazed.  Blessings on my sisters in law.  We remain tied by bonds of friendship and love.

Sunday, August 08, 2010

A palate cleanser

for all my Macalester and Defiance friends:

A Toast to the New

Today my ex was remarried.  It was a "big deal" requiring  3days of festivities and the services of an events planner. I only had an evening of celebration but I had a champagne remembrance.  I provided the champagne.  Friends brought hors d'oeuvres and cassis to add to the champagne.  We had a toast at 6:45 and it was to: "He's her problem now."  Quite fun.

From Mason Williams, author of "Classical Gas."

Them Hors D'oeuvres

How about Hors D'oeuvres, Ain't they sweet?

Little piece of cheese, Little piece of meat!

Reunion pictures

here are some pics that I took at my 40th reunion.  I'm waiting to hear from Holly and Cindy about the pics they took.

Wednesday, August 04, 2010

This is partly why my 40th high school reunion was so much fun

Bill and Candi and Carmel and Gar and Rick and Fred ("Sugar Lips") and JoAnn and Mary and Connie and the Julies and Myra and Pat and Becky and Jane and Rosie and Hilda and Val and all the other kool kidz were there. Jan came all the way from Shanghai and Cindy came from San Diego and Holly from North Carolina and the two Jeffs from FL and Reno, and Pork, er...Mark from NY, and Mike from his plantation in S. Carolina (shades of The Big Chill).

Bill is the lead singer for Wally and the Beavs and, no, they didn't play.  But as Jeff put it, once the music starts the talking stops.  And we had 40 years to catch up on, so we talked all night long.  And laughed and laughed and drank a bit.  But if I ever go back, again I wanna be sure that I see Wally and the Beavs and dance.

Nick did not make it.  He was valedictorian of our class and became a lawyer.  He was convicted of something involving money more than 15 years ago, and disbarred but he showed up at the 25th reunion, just having gotten out of prison.  This time was a no go.  I heard that he had registered but his check bounced.

Barry and Tom did not show up.  They were the class heroes 15 years ago, the main characters in the non fiction book by Seattle attorney Gary Kinder, Ship of Gold in the Deep Blue Sea.  Gary gave a class on legal writing to the attorneys at the Washington Attorney General's office before the book came out, and I had a great time after the CLE, talking with him about Barry and Harvey and Defiance.
But Barry has now been missing for more than ten years.  He went down to Panama and just vanished.  Even his immediate family doesn't know where he is, which is sad because his mother is (like my mother) getting on in years.  He could be dead for all we know.  And Tommy, who we knew as Harvey (he took the name of the rabbit from the Jimmy Stewart film), has also gone to ground.  Seems that he never paid the investors of the SS. Central America project back.  They were mainly in Columbus, but there were some folks who worked for the project in the Seattle area who also were waiting to be paid. So we missed both Barry and Tom.

But we didn't seem to have enough time to visit with those who did make it.  Both Friday and Saturday night went by swiftly.  Although I understand there were some young ones at the bar Friday night who were impatient to get rid of the old folks who were cramping their style and their cigarette smoking room on the patio outside.  Tough nuts because Candi put them in their place.  You go grrrl!!

The town is the same, yet it isn't.  It looked significantly smaller and there were certain landmarks gone, like the railroad station where we boarded a train in elementary school to ride to Hicksville.  And the hospital where my dad practiced pediatrics was gone, replaced by a fancy new hospital on the other side of town. And all of our elementary schools, Brickell, Spencer, Slocum and Anthony Wayne had been centralized in one new building.  It was a weird time warp.

Luckily I had saved lots of school newspapers and some English class compilations so we had several dramatic poetry readings Saturday night.  The one that had me in tears I was laughing so hard, was "Skippy" by Rick.  A copy will be posted as soon as my s drive comes back up.  Or unless Rick decides to buy me off.  Just kidding Rick!  I'm sure with your 4 marriages you don't have much discretionary income, even though you are a fat cat GM executive!!  ; )  xoxoxo

May Dance, 1967
from left to right: Linda, Rick, me and Barry

P.S.:  Mark has written far more eloquently about our reunion.


 by Rick McCurdy

Skippy was that dog's name.
He wasn't wild; he was tame.
When out for a walk on a sunny day,
Along came a car and there he lay.
Skippy was man's best friend.
The end.

End of life care

I had a wonderful time at my high school reunion and will write about it more when I have my computer back (my oldest son is back for his father's wedding this weekend and is sleeping in that room).

But in the meantime, I strongly recommend this article to you by Atul Gawande in the New Yorker.  And thanks to Nancy Nall and Jolene for pointing it out to me.  God, I hate Sarah Palin for her death panel remarks.  That ignorance is going to cost so many people their quality of life at the end of their lives.  Please, for your own sake, read the article.  Thank you.