Zen Hospice Journal Sunday December 16

Phil Cushway with strawberry shortcakes

Jean had many visitors today, which raised her spirits, but also tired her out.  It also meant she did not have the chance to try a wheelchair excursion, or to walk a few steps with assistance.  In the future, if too many people show up at once, some may need to take turns.

Yesterday, when he brought over chocolate mousse, Phil said he would come back soon with strawberry shortcake.  He was as good as his word.  Phil also brought a binder contaianing page mock-ups for his "Poetry and "Protest" project; a few of the mock-ups were possibilities for displaying Rita Dove's "Lady Freedom Among Us."  Phil read the poem to us out loud, see below for the text.

Karen Creech

A frequent visitor, Karen came bearing gifts of soft, sibilant, comfortable clothes: shirts, a sweater, socks, and shoes.

Susan Martinez with camellias

Susan is a friend of Jean's from her Math Reviews era in the 1980s, who goes swimming with Pamela Michaud.  Recently Pamela and Susan were talking, and discovered that Jean was a mutual friend.  That's when Susan found out that Jean was in the Zen Hospice.
 
Susan told us a few things about the Mathematical Reviews days. In some ways it was the most social job she ever had, she was very fond of her fellow proof editors, and even some of the mathematicians were friendly.  But she also describes it as a very physical job, were she and many of the other proof editors would work in their own worlds, listening to their own music on headphones, hunting for math symbol typos.
 
Susan also told us a few things about herself.  She's a volunteer coordinator at Children's hospital in Oakland, and at the end of January, along with other health care professionals, she'll participate in a state department sanctioned tour of Cuba.  She promised to come back and tell us her impressions of the forbidden isle, and expects to be seeing us before then. On leaving, she asked us if there was anything else we needed, besides camellias (roses are always welcome, as are plants that thrive in indirect light).

Pam Cory with MJ icon

Pam is an old friend and colleague of Jean's at URS, making her first appearance at the Zen hospice. She had wanted to come before, but -- no surprise to those of us in the technology world -- work's been crazy.  She brought the Michael Jackson icon with her, knowing that Jean's a serious fan who has danced in several "Thrill the World" events.  Pam, Susan, and Jean did some editors' shoptalk, discussing the positions of editors at URS--not quite part of the engineering team, not quite support staff.  Like "governesses" in an English estate was how Pam described it, not upstairs, not downstairs, but in on a landing in between.

Matt Garber, bearing a gift of cerry-corn scones
preoared by hs wife Cindy Fressola

This was Matt's first appearance at the Zen hospice, but he and Jean have Skyped, and they've communicated through Facebook.  Matt G. is part of the URS engineering world, but he knows Jean because he's an old folk dancing and bicycling buddy of Matt P.  BTW, Matt G. is no stranger to the realm of serious disease. Diagnosed with multiple sclerosis in the late 1990s, he continues to work, be a family man, and an intrepid bicyclist; every September he raises money for the cause by riding in the Waves to Wine fundraiser.

Doug Flock and Pamela Michaud

In the evening Doug and Pamela brought several videos for Jean, including a documentary on John Lennon in New York.  By that time Jean was too tired to watch, but she intends to get to them soon.

The poem Phil Cushway read to us, intended to be included in his book "Poetry and Protest."  I head it as a vision of the spirit of freedom dressed in drabs by harsh circumstances, not chic, not happy, but never to be ignored.


Lady Freedom Among Us
 by Rita Dove

don't lower your eyes
or stare straight ahead to where
you think you ought to be going

don't mutter oh no
not another one
get a job  fly a kite
go bury a bone

with her oldfashioned sandals
with her leaden skirts
with her stained cheeks and whiskers and heaped up trinkets
she has risen among us in blunt reproach

she has fitted her hair under a hand-me-down cap
and spruced it up with feathers and stars
slung over her shoulder she bears
the rainbowed layers of charity and murmurs
all of you  even the least of you

don't cross to the other side of the square
don't think  another item to fit on a tourist's agenda

consider her drenched gaze   her shining brow
she who has brought mercy back into the streets
and will not retire politely to the potter's field

having assumed the thick skin of this town
its gritted exhaust its sunscorch and blear
she rests in her weathered plumage
bigboned  resolute

don't think you can forget her
don't even try
she's not going to budge

no choice but to grant her space
crown her with sky
for she is one of the many
and she is each of us

.

Zen hospice journal - Saturday 12/15/12

Bob, Terry, & Jean

The first guests to arrive on Saturday were Bob and Terry Bulwa, who brought the Scrabble set shown in the photo.  But Jean was sleepy when they arrived around 11, and still not feeling up to socializing when I came at noon.  They decided to give us more time, waiting downstairs in what the Zen Center calls their family room. Then they came up to say good-bye at the same time the Dr. Jennifer Clarke came to drop off a prescription.

  

Dr. Clarke was the physician Jean saw when she was at UCSF last on Thanksgiving week, the one who had to give Jean the bad news that she was running out of treatment options.  Despite the sad circumstances, she made a good impression on Jean, and the feeling must have been mutual -- it's not every day you hear about a doctor making a house call.

    

While Dr. Clarke examined Jean's wrist, still in a brace from the October 28 fracture, her husband Art Clarke chatted with the Bulwas.  Art is from Ireland, and regrets the time he spent trying to lose his Irish accent after coming to America -- a futile task, and unnecessary since Irish accents are so charming to the American ear.  Bob told Art about Contra dancing, similar to the Irish step dancing that Art knew well. And from there it was a short hop to the story of Bob and Terry's romance.  They met because they were both part of the Bay Area folk music community, and married in 1998 (secretly on March 30, publicly on August 1).  We were married that same year, March 21, and have always considered ourselves something like classmates.  But as fate would have it, we could not be part of either of the Bulwa weddings.  By March 30 we were on our honeymoon, and on August 1 we were in Ann Arbor for our wedding reception.

  

Chef Cushway

After the Clarke's left, then the Bulwas, we had another wave of visitors.  First there was Phil Cushway, who came bearing five Chocolate Orange Mousse confections he'd made on Jean's request.  The Zen Hospice chef had also prepared chocolate mousse, which Jean had sampled, and it seemed only sporting to compare his efforts to Phil’s.  Per Phil, he was clearly the winner.  Where the Zen version was as dense as fudge, his was light and airy.  Later on in the afternoon, he asked Jean if she would countenance a follow-up effort, strawberry shortcake. Jean gave her consent, and Phil promised to bring it by soon.

Alicia

Glenn & Alicia

 The next visiors to arrive were my niece Alicia Pico and her dad, my brother Glenn Pico, coming to see Jean from Sacramento.  Alicia is in her freshman year of high school, and next week she has final exams.  She says high school is OK.  While teachers still pile on the homework, there is less busy week than in Junior High. One thing she's glad about, she had her braces off in the spring.  Check out the photo, the lass has a beautiful smile.

Glenn is busy with final exams next week too, but from the other side of the desk.  He teaches math at a community college, and next week is his students' last chance this semester.  When the exams are done and graded, he plans on coming down to see Jean again.

After Glenn and Alicia, Joseph Balaoro came bearing videos of his two cats, Zulu and Khan.  He also promoted the reputation of these charming creatures by sending the photo shown above. Like Jean, Joseph is of course a cat person, and at one time was considering adopting one of the slew of outdoor cats that Jean feeds, and names.

Zulu & Khan

Joseph Balaoro

Finally, Karen Creech, a very frequent visitor, came with a pleasant surprise.  Yesterday she had asked whether it would be more comfortable sleeping on some roll-up sleeping bag pads she had, and I said it's worth a try. But Karen decided roll-ups weren't good enough, and instead bought a folding mattress pad for me to use.

You may wish to pause for a moment, as I did, and reflect on this.  It seems there are people whose behavior offers no explanation other than compassion. This might force you to alter your conception of human nature.  And this, in turn, might cause us to question ourselves.  You may think you have a broad, tolerant expectation of the range of human behaviors.  Why, of all things, would compassion be surprising?

By this time Jean was ready to party.  Seven of us were crowded into her room at the hospice, and the social magic started to happen; the conversation became lively, freewheeling of general interest.  Here is a brief recap, and may it inspire you beat it down to the Zen hospice and participate in the discussions.

It started with Phil making a joke about being a book designer who integrated text and images, every page was a work of art. "I special in pornography," he said, "what men really want."  But then he went on to talk, with feeling, about his latest project, a volume of protest poetry centered on Martin Luther King's "I have a dream" speech in Washington DC.  Phil said that one thing he'd learned from his work on the book was the importance of churches in the Civil Rights movements.  Based on this, he thought they must be central to all American movements for justice and equality.

Karen challenged him.  "What about gay right?" she asked. Stonewall was a bar, not a church.  And someone else mentioned abortion.  Did the Catholic Church's stance on this issue put it in the forefront of the struggle for gender equality?
  

Later on, Glenn brought the discussion back to race, with an anecdote from his job as a community college math teacher.  Every year his college has a math contest, and this year, for the very first time, a black male won the contest.  Glenn tried to interest the campus newspaper in the story, but there were no takes  Because they just weren't interested?  Because race issues are too difficult to discuss?  Glenn asked us.  I ask you.

Zen Hospice Visitors & Notes - Fri 12-14-12

12/14 Visitors

Karen Creech.  Karen stopped by after work, which today meant representing a mom in a stressful trial in juvenile court.  She stayed late into the evening, watching a movie with Jean.  She has a gentle, patient manner during her visits that Jean finds especially helpful.

Phil Cushway.  This was Phil's first appearance at the hospice, although his letters have made a big impression on Jean.  He agreed to return soon, with some of the chocolate moussse that Jean has been craving. When asked, Phil had a clarification to my description of him as a book designer.  He designs books integrating text and images, where every page is a work of art.

Alison Drury.  Alison is a project manager at URS, where she and Jean collaborated on several efforts.  In those days, they were in the habit of taking a coffee break together in the afternoon. If the day was especially stressful, Jean would treat herself to a packet of chocolate-covered graham crackers, and Alison brought a packet of these magical stress reducers with her to give to Jean.  The two colleagues chatted for a half-hour.  Most of the topics were pleasant, but Alison also talked about her father's liver cancer, and how that helped her empathize with Jean.  

The Garber-Fressolas.  This was Jean's 2nd Skype at the hospice. We caught up with Cindy, Matt, and Lucia just before they left so Lucia could do some holiday shopping/socializing at a mall in Emeryville.  The family was in good spirits, and by appearances Matt made a strong recovery from his heart surgery.  Jean talked about life at the hospice, and we arranged for them to come see things for themselves this Sunday at 2.

Gabe Kurt-Pico.  This was Gabe's 2nd visit to the hospice, and as before both he and Jean appreciated the experience.  This time they talked about movies.  Like Karen Creech, Gabe has a gentle patient manner that hits the spot with Jean.  

12/14 Notes

Three things on the agenda for Jean at the hospice: getting a massage; taking a wheelchair excursion to the garden, or the Samovar Café; trying to walk a step or two with help from the nurses.

Culinary tip -- for $5, the Zen Hospice chef will prepare visitors an excellent meal. This might be the best restaurant bargain in San Francisco!

Planning to stay a week in Beverly Hills

We arrived this afternoon, checking into a B & B that we’ve booked for a week.  We’re not far from some streets whose very names convey celeb status: Wilshire, Sunset, Avenue of the Stars.  But we are not here to catch a glimpse of the rich and famous; we chose this place because of its proximity to UCLA, where Jean has an appointment to see the Vice-Chair of neuro-surgery, Dr. Linda Liau, on Tuesday morning.  We are asking Dr. Liau to enroll Jean in one of her clinical trials, which would entail another round of brain surgery, followed by an experimental treatment.  The surgery could even happen this week, which would doubtless extend our stay in the southland

Disappointing MRI, Jean Could Use Some Encouragement

Jean's MRI Tuesday showed continued tumor progression.  The temozolomide she's been taking only slowed down tumor grown, so UCSF is considering stopping her prescription; they will tell us their decision after the tumor board reviews her case Thursday.  At the same time, she will not be able to use the Novocure device until the scars from last week's surgery heals.  That could take a month, although UCSF will re-evaluate her every week. However, there is a very real possibility at a critical time, Jean could go without any treatment from UCSF.

There are other options, both in conventional and CAM (Complementary Alternative Medicine).  In the conventional department, we will be in Los Angeles next week to talk to a UCLA neuro-surgeon about a phase I clinical trial of aCTL and a phase II clinical trial of dendritic cell vaccine, both of which use the body's immune system against tumors cells.  In the CAM department we are looking into hyperthermia therapy and other Gorter-method techniques, available at Dr. Gorter's clinic in Cologne.
  
If you had been thinking of phoning Jean, or sending her a card, now would be an opportune moment.  The truth is she's a little demoralized.  Of course it's hard to know what to say to somebody with a life threatening illness, but one of Jean's wonderful qualities is her ability to receive positive energy from other people.  No matter what you say, she'll know you are thinking about her and wishing her well in a difficult situation, and she will draw draw strength from that.

If you need our full street address or phone number, or want to set up a visit, email us at 1853woodst@gmail.com.  Jean personal email address is rosamundi.jean@gmail.com, and of course you can also write to her there.

Minor surgery does happen

Jean was in surgery for two hours, and emerged with long blue scars marking the outline of where the metal plate was.  And may still be, we have not yet had the opportunity to talk to the surgeon, Dr. Berger.  Jean is in good spirits, with a hearty appetite, and many appreciative words to say about her treatment at UCSF.  Everyone here seems exceptionally kind and competent.

Jean went into the UCSF OR at 4 PT

After checking into the ER on Labor Day, waiting
to talk to a Doctor.  The gave her the mask because
she's taking steroids, which cause immune system problems

They say it's minor surgery, but they will be removing the metal plate they inserted after her craniotomy in 2011.  The reason is an infection on the top of her head that went down so far you could see metal at the bottom of the wound.  They're not entirely sure what they'll find when they remove the plate, perhaps nothing, perhaps more infection. More news in 2 - 4 hours.

Tuesday, September 4, 4 pm, on way to OR