Jean treatment update

Brief recap of Jean's brain tumor news from last week: anxiety.

Expanded version. Last Friday 6/22 Jean started CCNU, her new chemotherapy drug, and tomorrow 6/26, she'll go to UCSF to be fitted with a Novocure helmet. CCNU was one of the first FDA-approved GBM "remedies", and the Novocure helmet, which works by emitting alternating electric fields that prevent tumor cells from replicating, is the latest.  The quotes mean that neither is a miracle cure, but we're hoping for synergy.  She'll be shaving her head tomorrow morning to get ready.

But it took a week between the time Jean agreed to try CCNU, and the time she picked up the prescription at the drugstore.  During that week she was moved to write an email to her neuro-oncologist asking about the delay, restrainedly observing that in 2011 the tumor had tripled in size between the time it was discovered and the time it was removed.

Meanwhile, we were filling out the forms to get started with Novocure, agreeing to pay $17,500 per month should Aetna refuse the claim.  Sobering.  The forms were accepted on Tuesday 6/19, and then there was a week's delay while a Novocure representative made arrangements to fly out to do the fitting.  Jean will be either the first or second UCSF patient to try the helmet, so part of the problem seems to be that they're still working out their procedures.  Not a very comforting thought, when you think there's something you don't want growing inside your head.

Other things happened too, which we plan to put in a longer post.  Call it friendship, the way some people extend themselves for you when you need it most, and neither party to the transaction will ever forget it.  A vast topic, and we intend to explore it some, but there's a practical upshot coming soon.  Jil, a work friend of Jean's, and fellow cancer survivor, created an online sign-up sheet, and we'll be posting that link.  We could use little kindnesses, meals, rides, your precious time when you hang out with us.  If that sounds pleasurable, there's probably a slot that will work for you.

  - Jean and Matt 6/25/12

Esther at Manor Care Rehab Hospital

Saturday, August 13.  Last day at Kaiser, reading her Northern Californian Jewish Newspaper.  She still needs extra oxygen after 3 weeks at Manor Care.

Sunday, August 14.  With her eldest child Gale, first day at Manor Care.  Gale is devoted to Esther, and has been a big help in her time of need.

Friday, August 19.  With Jean, day six at Manor Care.  Esther has often said that she draws strength from Jean's example of coping with a life-threatening disease. Note the cell phone on Esther's chest. Sometimes you can reach her on that phone number, and sometimes she even makes calls.

Friday, August 19.  Reading Life of Pi the old-fashioned way, with the help of a book holder.  Esther still had a cast on her left arm (subsequently removed), and her right hand was weak too, making it hard for her to turn the pages.  Esther had previous listened to an unabridged version of the book that she downloaded from audible.com, but as often happens, she saw different things in the text when she actually read it.  For one thing, the italicized author's meditations are difficult to render by voice.

Saturday August 20.  On day seven at Manor Care, Esther caught up with the 21st Century by getting a Nook reader from Barnes and Nobles, pre-loaded with Life of Pi.  The Nook is lighter and smaller than a paperback book, and it's also easier to turn the pages, if not exactly as easy.  As of September 4 she's up to p. 301, and when she finishes she can choose between The Amateur Marriage by Anne Tyler, and The Help by Kathryn Stockett (now a major motion picture).  If you have other suggestions about books available in Nook format, please let us know. 

Esther at Kaiser Hospital Walnut Creek, part 3

Wed. Aug 3, in Intensive Care one day after surgery
Esther is doing well, but there are some difficult days ahead.
Her hands are so swollen from amyloidosis that she can't hold a book
to read.  And while we were visiting, a nurse came in to admonish her
that if she didn't do her breathing exercises she was at risk of
developing pneumonia.  He also wanted her to increase her calorie intake,
and Esther promised to apply herself to his instructions.

Esther at Kaiser Hospital, Walnut Creek, part 2

Tue Aug 2, in Intensive Care after the hip operation.
Esther prayed on the way to the operating room to calm
her fears.  Afterwards, she apologized to the nurses for
being crabby before the operation.  They told her she was
fine, which made Esther think they must take classes in lying.

Tue Aug 2, in Intensive Care after the hip operation.
Ever the intellectual, Esther wanted to read, not watch TV.
But the nurses could not find her a prop for the book, and her
hands were to weak to hold it.  So she propped it against the
side of her bed.

Esther at Kaiser Hospital, Walnut Creek, part 1

Esther after arriving at ER, Sun. July 31

She was in severe pain from her left hip and left shoulder.

Esther at ER, Sun. July 31, a little bit later

She felt more comfortable after being seen by a doctor.

Esther, Pearlita, stuffed cat and doll, Mon Aug 1

The stuffed cat was a gift for her kids, the doll was for Esther

As you can see, Esther liked it

Tue, Aug 2, after hip operation: Esther and Jean in Intensive Care.

Esther was alert and in a good mood, only a few hours after the operation.

Tue Aug2, after hip operation.  Esther and Heidi in Intensive Care.
Heidi has worked with Esther since she was in Tiffany Court,
helping her to organize her papers.  Heidi has problems of her own -- like many worthy souls, she was hit hard by the collapse of the housing
market.  But she made time in her difficult life to come and support Esther.



dldld

Lillian's Yarhzeit

Esther's sister Lillian Volovick passed away last summer, and the Picos and the Volovicks gathered at the cemetery on June 12 to unveil the headstone and end their year of mourning.  Rabbi Shanks conducted the service.  The pictures below were taken by Dennis Volovick, the middle child of Lillian's three children.


Rabbi Shanks asked for memories of Lillian from the mourners, and Dennis, Joan (Lillian's youngest child), and Ron (Lillian's son) all obliged.  Esther, whose care was was crucial for Lillian in the last decades of her life, did not share one of her stories, but she sometimes tells an anecdote of her sister as a young woman, which shows a Lillian in a different light for those who only picture her in frail old age.
  
At that time in Philadelphia, young singles would gather at private residences on Saturday nights for dance parties.  Lillian Mick met her future husband Martin Volovick at one such party.  Martin was so smitten by the attractive young Lillian that he wanted to dance every dance with her.  This was a bit awkward though, because Martin had brought a date to the party, and said date looked unkindly on this turn in Martin affections.

Lillian had a solution.  "Escort her home," she told Martin, "then come back and dance with me."  And he did.  And there she was in that shining moment, young, pretty, and so self-possessed she could send away a guy she'd just met, knowing he'd be back to stay.
 
See http://1853woodst.blogspot.com/2010/06/lillians-memorial-service.html for pictures and stories from Lillian's funeral.  Joan brought helium balloons that she released after the service, that we watched float up in the sky and disappear.  It was a beautiful touch, thanks Joan.

Esther, Retired Public Employee

California Highway Patrol, Martinez Office, early 1970s. Esther is 
standing just to the left of the woman holding the bicycle.  
(Click to expand full photo)

If you're still following the economic news three sad years after the sub-prime debacle, you've learned how some feel that the source of America's woes is now identified.  Not housing speculators, or bankers who asked for deregulation and then bailouts.  Supposedly, it's retired public employees, extorting extravagant pensions that will bankrupt governments in the greying decades to come unless drastic measures are taken immediately...first and foremost, denying these villains the right to union representation.
   
Ever on the alert for economic insights, this blog was fortunate to have in Esther a person with firsthand knowledge of these matters.  A retired state worker, she provided us with the picture above (detailed pictures below), showing her with her confederates circa 1970.  Moreover she was willing to discuss her career candidly, describing step-by-step the path she took from public employee to public enemy.
  

CHP photo detail: Esther

How much? From the state? About fifteen hundred.  And about the same from social security.  When I retired in 1992, after working for the state for 25 years, I was making about two thousand a month as a secretary for the Epidemiological Division of the health department.  [If you Google "inflation rate," you'll find many calculators that will tell you how much 2,000 1992 dollars are worth in 2011.  The one at http://146.142.4.24/cgi-bin/cpicalc.pl says $3,139.32]
  
What about health care?  I have a $10.00 copay at Kaiser, the same for generic drugs.  Brand name drugs are more.
  
What made you want to start working again?  There were a lot of reasons.  I was divorced with 6 kids, my ex-husband was a good provider, but he had his own business and it wasn't consistent.  And we didn't have a medical plan.  If one of us got sick I don't know what I would have done.  And I felt I needed to do something more with my life. I'd been a housewife for 20 years, and sometimes when I was at home I'd hear the children playing in the schoolyard and think how wonderful it would be to have a place to go outside the house, something to do.

How did you look for work? First I had to prepare myself psychologically.  I tried to encourage my belief in myself, told myself that being a housewife was an important job too, that it required planning and intelligence.  I had worked as a secretary before I got married, so I thought I could dust off those skills.  I had a stenotype machine, and after some looking I found a store that sold paper for it, and started to practice.
  
Why a government job? I thought I'd do well on a test.  And I was right, I did so well I was called for a couple of interviews.  At the Department of Motor Vehicles, the interviewer asked where I'd gone to high school, and I said Girl's High in Philadelphia.  He was impressed -- that was the top academic high school for girls in Philadelphia at the time, and they told us that if we went to Girl's High, we'd never have trouble finding a job. And it turned out they were right, after all those years.  He offered me a part time job as a secretarial assistant, and I accepted. I was delighted to have that job!

Did it live up to your expectations? I liked working at the DMV.  In fact, I liked all my jobs, but it was always good to go on to something better.  And at the DMV, "better" for me meant a full=time job.

How did you find one? There was an opening at the Highway Patrol, and they gave me an interview.  When I reported to work at the DMV after the interview the head of the office said to me "I heard you saw my husband today," and I said to her "What do you MEAN?!"  I thought she was accusing me of having an affair with her husband, but what she meant was that her husband was the one who interviewed me.  She gave me a good reference to her husband, and I got the job.

How was working for the Highway Patrol? The job was different than the DMV, I was meeting the public, talking to people when they came in to inquire about tickets or get an accident report, that sort of thing.  And of course the pay was better because I was working fulltime, but the State of California pays once a month, so I needed to manage the money carefully.
  
How much? I don't remember my salary exactly.  But I do remember that the health benefits were better.  There was no copay at Kaiser, no charge for prescription medicine.

Did you leave the Highway Patrol because you were offered a better job?  Not really.  I was inspired by children, just like when I first started back to work.  When I went up to Chico for Terrye's graduation I was so proud of her, it seemed like such a great achievement for her to get a college degree. And it made me think that I'd like to get a college degree too.  So I started taking night classes at Diablo Valley College [DVC], the local community college].  I made good grades, and when I had accumulated the necessary years of college credits I was accepted into UC Berkeley.

But UC didn't have night classes, and as I said my Highway Patrol job was full-time, during the day, and it was in Martinez, about 30 miles from Berkeley.  So if I wanted to to go to UC I had to find a job that would let me take time off for classes, preferably close to UC.  And I found one, as a secretary for the Health Department, right by the campus.

And that was your last state job? Yes, I worked at the Health Department until I retired.

What was the biggest raise you received in your career? It was when I was made secretary to the head of the Epidemiological Division at the DPH.  Secretaries deal with interpersonal issues, and in that position I had to facilitate interactions between the Division head and the doctors.
  
Give an example of one such interpersonal issue. There was one woman, an accountant, who nobody really liked because she was very bossy.  Also, she was a smoker.  Smoking wasn't allowed at the Health Department, you were supposed to go outside, But she used to close the door to her office and smoke anyway, and everybody knew she was doing it.  One day she came to me and complained that was tired of always having to tell somebody how to do so something. I told her, people are tired of telling you not to smoke in your office.  And she got really mad and went into her office and slammed the door.

Did you ever use a stenotype working for the state? Not at the DMV. People would come in to renew their license, or maybe get their picture taken.  It wasn't like now, where everything is so organized, you go to once place than another, it's like being inside a big machine.  Back then there would be one person helping you with everything, somebody like me.

I did use stenotype years later, when I became secretary to the head of the department.  But I don't think anybody does stenotype and shorthand now, except in court rooms.  AOL has a list of professions that are becoming obsolete, and one of them is secretary.

How did computers change your job? Computers entered my life in the 1980's.  When we were first trained on them I didn't realize how valuable they would be.  Of course there are problems with computers too, but one thing I discovered right away is that they're great for sending letters.

When I started working for the state, we could not send a letter to more than one person without retyping it, and it had to be perfect each time.  I remember once doing a letter, and on the last line I left out a single word.  I had to retype the whole thing!  And then with word processors, you could just send a letter to as many people as you wanted.  What a wonderful invention!  Pretty soon all the new hires had to learn to use word processors.  Different ones, but they were all similar.

Mickey always said it was me who inspired him to use computers.  He came down from Alaska one year, and I showed him the word processor and the printer we were using at work.  He was so impressed that he had to go right out and buy a computer and the same word processing software, and look for a printer that could use the same word processing software.

What kind? I forget exactly, but it was unusual because at the health department we had to write letters with scientific symbols.  Back then that required special software and a special printer, and Mickey had trouble finding one.  Eventually he got frustrated with those problems and abandoned the software I told him about for a different brand.  Now he's much better at doing things online than I am.

What other office machines did you use in your career? The copier of course, and the telephone, taking messages.  But taking telephone messages are probably also becoming obsolete, since there are answering machines now.
  
What else did you do as a secretary? Part of my job was filing.  That's how I earned the respect of the head of the office at the Highway Patrol.  She had a big stack of documents to file on her desk, and I asked if she wanted me to do it.  She said "I don't think so, you don't have enough information," but she let me try. I filed the whole pile, and she was so impressed!  But really, it wasn't that hard to do.  For letters, there were folders in a big file cabinet organized by who got the letter, and who sent it to them, so it was easy to find the right one.

At first with computers we still stored copies of everything in a file cabinet, even the email, so it didn't really save any paper.  At the health department, my first job every morning was to download the messages and print them out.  Then I'd take them to the department head, and he would read them, write out his answers, and give them back to me.  Then I would use email to reply to whoever had sent it, and print out a copy of that.  If there was a lot of going back and forth, I would still print out a copy each time.  This sounds like a a lot of unnecessary work, compared to now when everybody does their own email, and saves copies in folders if it's important.  But back then it was a big advance, it made communication with the head office in Sacramento much easier.

 Esther detail detail: Note the kind, intelligent eyes of this career civil servant

And there you have it, one of the millions of individual stories that led to the unraveling of California's finances.  But in reading her account of her work life, there's obviously another angle besides finances.  As all adults with broad experience in life know, there are many college graduates who never crack a serious book once they get their first serious job.  But this secretary went in the opposite direction, from work to school, getting a degree from a top-ranked university, while on her job she was mastering the revolutions wrought by computer technology.
 
How did she do it? Why did she do it?  We'll find out soon when this blog publishes a follow-up interview: Esther, Insisting on a Life of the Mind.