Wednesday, October 1, 2014

Silicon Valley Brain Tumor Walk, Saturday, September 27

Laurie Graham's Calf Tattoo,
with Updates 

Laurie commissioned  the original in 2012,  to commemorate ten years since she was diagnosed with an inoperable oligodendroglioma. In the two  years since,  she's added two hash mark to commemorate survival. You can read more about her on her blog.


After the Walk,  a Survivor's Story 
Laurie said "Brain tumors are worse than most cancers because every case is unique.  For that reason it's important to form bonds.  One of the most important things that can hold us together is hope.  Every time I feel like giving up, my doctor comes up with something new for me to try.  And don't be afraid to lean on family and friends — they really want to know what they can do to help."

Honoring Team Marvin

Team Marvin, twitter hashtag #teammarvinll, won the coveted team spirit award. Here's Marvin's story, as told by his wife Valerie on the team web site:  diagnosed with a glioblastoma … on his 32nd birthday in April 2014.  He underwent a craniotomy … and finished his initial round of chemotherapy and radiation …   I am walking for him, our son, our baby girl on the way  and to raise money to help find a cure 


    The Silicon Valley Brain Tumor Walk made a strong showing in its second year, attracting over 500 walkers, and garnering over $105,000 by the time those walkers had completed the course.  Jenifer Printess, the new Director of Events for the National Brain Tumor Society (NBTS), announced the totals from the podium.  She told us the NBTS will use our contributions to develop "policies and procedures" such as "new clinical trial endpoints," which presumably would streamline the FDA-approval process for promising treatments. Jenifer also said the NBTS is participating in a "research collaborative" whose goal is to double the glioblastoma (GBM) survival rate.  GBMs are the most common, and the most lethal, form of malignant brain tumor; patients can expect to live just fourteen months after diagnosis, and there have been only incremental improvements over the past decade.

     Despite frustration over slow progress on GBM treatments, brain tumor walks are a valuable opportunity to learn about new developments.
      NovoCure had a booth.  Their device, which kills tumor cells with magnetic fields, was approved by the FDA after clinical trials showed it was just as effective as Temodar, the current "gold-standard" GBM chemotherapy — that is, it helps only about one in five patients.
      OncoSynergy had a booth too.  Their flagship drug, OS2966, provides "multiple mechanisms of action that can be used for different types of cancer and at different stages," and has shown "preclinical efficacy in multitherapy resistant brain cancer."  It is currently being prepared for phase 1 clinical trial (i.e., to test that it does no harm). 
      StemCycle did not have a booth, but two of their officers, Matt and Pete were present.  StemCycle tailors treatment plans for individual patients, including diet plans.  Matt recommends the ketogenic diet, originally developed to treat epilepsy in children, as a good way to fight cancer.  The variant he likes is 75% fat, 20% protein, and 5% carbohydrates (compare to smooth peanut butter, per CalorieLab: 78% fat, 17% protein, and 13% carbohydrates).  The concept behind it is that if a diet is low in carbohydrates, ketone bodies replace glucose as the energy source for cells — and cancer cells cannot metabolize ketone bodies. 
      Finally, I had the chance to chat with somebody who gave me their not-too-well informed impressions of a 2012 phase 1 clinical trial that tested a cannabinoid named CBD (non-intoxicating) as a GBM treatment. This person agreed to put me in touch with someone who knew more about the trial and could provide details. However, it seems important enough to justify passing along third-hand impressions now, since many people believe the anti-tumor properties of cannabinoids are only overlooked due to drug law insanity (Jean and I were certainly in that camp). Just bear in mind that I'll likely post additions and corrections.
      Third-hand impression — the outcome did not demonstrate clinical effectiveness. The researchers speculated that this was because CBD was not present in the brain in sufficient quantity, and that a shunt delivering the cannabinoid directly to the tumor site might yet provide better results.  But nothing in this test supported the notion that the CBD inhaled with marijuana smoke is a brain tumor panacea. Of course that doesn't mean cannabis is not useful and important as palliative medicine, but that's a different question.

     Brain tumor walks are also a way to draw inspiration from how other people confront a terrible disease.  Everyone has a story to tell.
      Dr. Melanie Hayden, now a neurosurgeon at Stanford, recounted her story from the podium.  Her uncle was diagnosed with a GBM when he was thirty-five, the same age she is now.  He did not beat the odds.  Afterwards, her parents took her cousins into their household, and her uncle's fate inclined her toward treating brain cancer.
      Dr. Anne-Marie Carbonell, OncoSynergy's VP of Clinical Development, was known as "that doctor with the pink lipstick” when she was a neurosurgeon. Then "I went from doctor to patient.  A few surgeries and pacemakers later, I realized I could no longer return to the career I had been working towards for the last decade."
The hashtag is #cancersucks.
The turquoise t-shirt is for Mikey's Militia
      Dr. Shawn Carbonell, OncoSynergy's CEO and Chief Scientific Officer, is also an ex-brain surgeon.  He spent "18 years prepping for a career as an academic neurosurgeon," then abruptly abandoned his clinical practice to work full time on a cancer treatment idea that "burned a hole in my brain" (no tumor reference intended).  When he met Anne-Marie, and "found out she was single and was no longer in neurosurgery I made it my mission to both marry her and hire her."
Big Al's Team
      It's a sweet story, read more by following the Science Exchange blog links (above).  The Friday night date tradition for this happy couple is to discuss clinical plans for the family business.
      And of course there are the survivors, each and every one given terrible news by a doctor, that dreaded conversation; all present this day deciding that life means more than just survival, that part of their healing is to advocate for all brain tumor patients.
      And last, there are the families and friends of those who survive, and of those who did not. Few of us would object if you say we're also the least important element in the mix, that word comes up for us so often: It's the least we could do, go on the walk.  At least we designed catchy t-shirts and cute signs.  At least we can do something to show how much we love them.
      If our loved one did not survive, and we were very lucky, we found fresh words to tell them how deeply we loved them, while we still could.  If your loved one is surviving a malignant brain tumor, you may wish to consider trying your luck now.




Friday, August 22, 2014

Wood Street Gets Serious about Canning

Gale coring apples
Sam peeling apples
Every year the orchard gave us more fruit than we could dream of eating, and just giving it away was a lot of work. Many people were generous with us too, and we particularly liked the mason jars of homemade delicacies we received from our friends John and Sue.  This past year and a half those jars have been filled with soups, exactly the warm touch I needed.  This summer, inspired by all those jars, I decided to try my own hand at canning.

Of course that's much more work than just giving fruit away; family and friend to the rescue.  My oldest sister Gale and my younger son Sam both helped me prepare applesauce, and the pictures tell the story.



Sam pausing in his work
The tools of the trade,
some of what we made
Gale was first, when the only specialized equipment I had were the jars, bands, and lids themselves.  Then I talked to my friend and colleague Ted, ever generous with his candid opinions, who politely but firmly refused when asked if he wanted to take a jar home with him.  He pointed out that "You needa huge pot with a rack" to boil the jars, that just putting them in a pasta maker simply wouldn't do.  Next week, on day one of Sam's apple peeling efforts, we both donned masks and gloves, and used the huge granite pot you see in the last photo. But some of the jars had air bubbles at the bottom and needed to be reprocessed. On day two we had the fruit spatula you see in the foreground of the same photo, used to remove remove bubbles by sliding it down the side of the jar and pushing toward the center.  We also had the tongs that the spatula rests on, used for lifting hot jars out of the granite pot.  I had been using my hand wrapped in a dishtowel; surprisingly, I avoided a serious scalding.  De Tocqueville quipped that "God protects fools, drunkards, and the United States of America," and it seems her beneficence extends to ordinary Americans and their follies as well.

This weekend Gale's coming over again, and we'll use our cumulative experience to make the last batch. Will any of these final, safest jars, find their way into holiday gift baskets, with cute labels compressing a family newsletter saga into a few square inches?  Maybe in 2015, after I past last and most important food safety test, surviving a year on my own sauce.

Wednesday, June 25, 2014

Jean Lewis Scrapbook Story Part 1

Healthy baby Jean

A Truly Happy Childhood



This is part I of Jean's "scrapbook story," presenting her life before the tumor.  My goal is to have part II posted by July 1, 2014, and I probably will.  But it's been much harder to write than part 1: many details, still some tears, many difficult subjects to try to present with the right touch.

Disclaimer: The scrapbook story is intended as a whirlwind tour, and many important people and events are omitted. Please do not be offended if you are not included, my goal was to write something just long enough to give a sense of Jean's life. And of course many of my decisions on people, photos, and events were rather arbitrary.

-- µ

Jean was born on March 28, 1956, in the college town of Ann Arbor, Michigan, to parents who both had advanced degrees. Her mom Sylvia had a Master's degree in education. Her dad, John Lewis, Ph.D., was a chemical engineer, born into a poor, violent family, who had acquired an education by dint of his intellect and his scholarly disposition. John was revered for his deft, quiet wit, and his determination to give his own children the nourishing environment he had lacked as a boy. He and Sylvia would provide their daughters the same encouragement and opportunities that they provided their son.

By nature or nurture, Jean would inherit John's wit. Not the first person you'd notice at a party, but the one you'd remember longest, whose words would reverberate in your mind.

After Jean came Anne, then Ray
John and Sylvia had lost their first child to Sudden Infant Death Syndrome, and were extremely protective of Jean. But that did not stifle her spirits. She remembers camping trips; hunting for fossils with John; climbing trees; sneaking downstairs to watch Perry Mason, a show her parents thought best reserved for adults. 

While at Greenhills JHS, Jean made a vivid impression in her math class by memorizing several hundred digits of ∏. Jean convinced her friend Linda Hutchins to try "witchcraft," and the two chums cast spells to reveal their futures. 
Louise, René, and Jean
Jean also inspired Linda to dive into knitting, ice skating, and Morse code. Linda remembers young Jean fondly for her "infectious enthusiasm," a wonderful quality she carried with her to the very end.

At Huron High, Jean played flute in the marching band, started folk dancing, and 
At Huron High
was a top student. She made friends easily did not date much. She loved to read, and took French and Latin. To support athletics for girls, she also signed up to run cross-country, but did not practice because her main interest was band. Her friend Yao Louis remembers that when it came time for the meet, only she and Jean actually ran; the other girls, who'd had time to practice, all came up with excuses. Thereafter, Yao valued Jean for her daring and resilience, her ability to turn something intimidating into something fun and interesting.




College Days: Blossoming Out



Jean was invited to apply to Ivy League schools on the strength of her grades and test scores at Huron High, but she decided to go to college in her home
A confident, prepossessing
young woman
town. She entered the University of Michigan as an engineering major in 1974, thinking that she might follow in her dad's footsteps; she did share his interest in science and nature. But engineering didn't work out for her. In high school, she was always at the top of her class, and had not needed to ask her teachers for help. In college math and science classes, she had questions for her professors, but found that she was too reserved, or too proud, to ask them. She also felt socially isolated among the young engineers, and took a leave of absence after her freshman year.

She came back as a Russian Literature major one year later, moving into the Nakamura co-op where Yao was already staying. It was a happy decision, both intellectually and socially.

Jean never lost her
capacity for joy
Sailing with Yao and her
boyfriend
The University of Michigan was a center for Russian studies, and with her love for literature and gift for languages, Jean soon found a niche in the department. She found an outlet for her love of nature through hiking trips, especially on the Appalachian trail. And she made many new friends; had serious boyfriends; and became best friends with Yao, nurturing her through a personal tragedy and helping to rekindle her enthusiasm for life.
  
Jean worked part-time, first at restaurant jobs, then as a copy editor at one of U. of M.'s renowned journals,
On the trail
Mathematical Reviews. That work suited her well, weaving together the two major strands of her intellectual interests, science and language. She graduated from U. of M. with a BA in Russian Literature in 1984, and embarked on a career as a technical editor.















Jean Lewis, Technical Editor



The Jester at a URS Halloween party
Jean's career took off after she came to California in 1988 and moved into the engineer consulting world at URS. Not everything in that world was ideal: for example crazy hours, impossible deadlines, and insatiably demanding managers.  But she loved her colleagues, and thought of them as "smart people, making funny jokes all the time and talking about their new interests." 

What Jean did also had an intrinsic value. She worked on large, visible engineering projects, such as changes to airports and bridges, and the documents she edited were critical to describing those projects to technical and lay audiences. Renowned for being able to zero in on the sole typo in a crowded page, able to read the twentieth iteration of a technical document with the same fresh attention she bestowed on the first, Jean earned a niche of respect and accommodation in the corporate work
Part of the world's greatest get well card,
from Jean's URS colleagues after her brain tumor
surgery in 2011. The limerick by Pam Cory in the
upper left (There once was a lass from Ann Arbor…),
captures much of Jean in five breezy lines.
place. At the center of the process that creates the documents that guide the projects that shape the Bay Area, said niche was a better perch than many for looking out on the bustling world.

Her colleagues esteemed her highly. Deme, with an, international reputation as a soil
A visit from engineering colleagues while at the hospice:
Deme on left, Maria and Susie on right
scientist, insisted on having Jean edit his reports. They came in a steady stream when she was at the hospice, paying tribute, sitting by the bed, talking about old times, and just holding her hand when she could no longer talk. The last gesture she made to a visitor was a high-five with Deme, acknowledging the painstaking, important, and satisfying work they had accomplished together.











Mid-Life Romance



March 21, 1998
We were married in 1998 on the first day of spring. We had met folk dancing, had a passionate romance, and we were still trying romantic kisses when Jean was in the hospice.

One of our staple jokes was that we were really the same person: we both disdained conflict; had niches in the technical world; thought of ourselves as quiet, bookish, offbeat. But we came to this common ground by very different routes.

Before me, Jean had two long-term relationships that didn't quite work out, and I'd had a disastrous first marriage. My dad Charlie Pico was a street artist/carny; he made sure he would be the first person anybody would notice at a party, and would likely have the gathering laughing uproariously. He died in 1990, three years before John, but the dads might not have known what to make of each other had they lived to come to our wedding.

Languorously happy on our honeymoon
But we did not waste time comparing John and Charlie, or dissecting past relationships. We were too busy. We moved in together the day after the wedding, one week before leaving on a month-long honeymoon in Israel; we were so tired that for two days after we got there, that we fell asleep wherever we went. After we recovered, and then for much of the next three years, we devoted ourselves to racing the biological clock, trying to have children of our own. But the best we could do by our own efforts was one miscarriage. Two years of fertility treatment resulted in two more miscarriages with implanted embryos. But we found other ways to have fun.

For example, by crossing that threshold of middle-class respectability, home
The Happy Couple by Tom Kennedy,
an artist who often worked with my dad
ownership.  Jean, an avid gardener, wanted a blank canvass: a large, ugly backyard she could transform with her creations. The Victorian cottage we found on Wood St was charming, but the backyard was too small to hold even the fifty potted roses we brought with us. Then we bought an overgrown parcel in back of the cottage, called “the orchard” in the neighborhood. Jean had her dream house.


Moments from a Marriage



Jean was a volunteer research editor for a magazine called Rosamundi, devoted to preserving old and wild roses. In 2014, they published a special edition called Wild and Untamed, including an essay by Jean called My Healing Garden, describing how 
May 2010, Portrait of the gardener in a 
gentle hurry, a bit of her effulgent front 
yard garden creation in the background
she tended her preservation rose gardens in the orchard after she was diagnosed with a brain tumor. Next to her by-line is a photo (shown on right) taken as she was dashing off to a Rosamundi meeting, bouquet in her backpack, coffee mug in hand. It was such a devastatingly characteristic moment I'd asked her to pause -- not pose -- and be captured for posterity.

The roses in a preservation garden are endangered, and growing one successfully puts it one step further from the threat of extinction. In gardening, Jean found a way to create beauty, while doing her bit to save the planet at the same time.  She was very good at finding creative solutions to problems with real-world constraints, like limited time.

Other moments glowing in loving memory: the way she read and wrote in bed, to the delight of our cats, who would try to curl up on her keyboardbringing blog post drafts into the bedroom for her to edit, getting them back with a smile
We enjoyed
ourselves
that made the red ink feel like
In the orchard
kindness; then repeat, as the red ink dwindled and disappearedthe way she would leap out of bed and get ready for her day, so quietly I wouldn't hear her, then appear before me saying "I was just planning what I was going to wear"the time we were Darwin's Primeval Soup (me, Earth as soup can) and Emergent Life (she, evolving life forms) for a Halloween partygiving lessons at our garden parties on making Ukrainian Easter eggs (pysanky) -- dip the eggs in a series of dyes going from lighter to darker, each time adding more wax to mask of the area you don't want coloredgiving away our last twenties, before we left on vacation, to a stranger who told her a hard 
With Felix and Zola
luck storyin a supermarket parking lot, returning our shopping cart by riding it like a scooter; not showing off, just the joy of the girl bubbling up in the life of the woman.








A dozen + 1 of her Ukrainian Easter eggs




Wednesday, June 4, 2014

Next stop first grade


Nate gives approval
for the ceremony to start
Before ceremony close-up, with
friend mugging for the camera

On Monday, my youngest grandson Nate Kurtz graduated from kindergarten at Riverside elementary school, in Richmond CA.  Nate has accomplished much in the past year.  By March, he could write the numbers up to 30, knew 16 out of 30 of his "sight words," and was learning not to play so rough with his peers.  He is ready for the first grade.

The Riverside student body is about 3/4 Hispanic.  Mr. Garcia, the principal, spoke first in English, then translated his remarks into Spanish himself.  Mrs. Maldin, Nate's kindergarten teacher, spoke in English, then another kindergarten teacher gave the Spanish version.  The Riverside neighborhood is not exactly a trendy part of the Bay Area, and there are fewer white children than either blacks or Asians in Nate's class. But if you are adding up these factors and guessing that Riverside has inner-city school problems, take a closer look.

Riverside has a strong anti-bullying program, not just in words, but in serious consequences for students caught fighting.  Other Bay Area elementary schools actually have drug problems, but Riverside does not.  Their report cards grade students on many specific categories.  For example, Nate was graded on "Identifies and produces rhyming word in response to oral prompt" and "Blends sounds in one syllable words."

Dollar bill origami were
popular garlands
The graduation ceremony showcased the results of this approach.  Mrs. Maldin told us that all graduates needed to be ready to start reading, and that counting to thirty was the standard new first graders were expected to meet.  Then she had had the graduates count to a hundred, in unison, first by twenties, then by tens, fives, and twos.  Then the graduates recited the months of the year, then the days of the week.
Nate hands Tamar a red carnation


Riverside honors the magnitude of the graduates' achievement by making a big deal of the ceremony. That means honoring parents too.  All the children filed in holding red carnations, and Mr. Garcia closed his remarks by asking each child to give their carnation to their parents (or significant parental figure).  Many families made special garlands for their graduates, or gave them balloons, so they could carry the family standard with verve and style. Nate's big brother Moises was an usher, passing out programs, and his big sister Sarah was there too, dressed to the nines.

Mrs. Maldin's daughter, who recently received her Bachelor's degree from St. Mary's college in Moraga, gave the commencement address.  She read the graduates one of her favorite Dr. Seuss passages, from Oh the Places You'll Go:

  You have brains in your head. 
  You have feet in your shoes. 
  You can steer yourself any direction you choose. 
  You're on your own. 
  And you know what you know. 
  And YOU are the one who'll decide where to go...


Nate at the graduation banquet
Nate, Tamar, and friend at the banquet













She advised the graduates that as they press on in life, deciding on direction and and destinations, their goal should not be to see how many friends they can make.  Instead, they should try to see how many good friends they could keep, the good friends being those who believed they could make their dreams happen, despite the naysayers.

After the ceremony, the party moved to Nate's kindergarten classroom, where we enjoyed a potluck banquet.  Nate is a picky eater, but he gave the fried chicken and watermelon enough attention to get down a few bites.  I enjoyed the macaroni and cheese and pasta salad immensely.

And after the delicious potluck banquet, Nate and his entourage went to his great-grandmother Margaret's house, and Nate, siblings, and friends plunged into the joys of summer vacation -- hooray!  The first thing Nate wanted to do was to draw some pictures for grandpa, and he had me go out of the room so I would be surprised to see what he had made.  When I came back, he presented me with my very own picture of Sponge Bob, as if somehow he'd known that was exactly what my refrigerator door needed.  In case you're wondering, the blue checkmark to the right of Nate's name is what Mrs. Maldin would have made, if she thought the picture was complete. 

"Sponge Bob," by Nathan Kurtz,
for grandpa
Picture of the artist
displaying his palette.

Sunday, May 4, 2014

Bay Area Brain Tumor Walk, Saturday May 3, 2014



Jean Lewis at the Page-Laguna Park,
next to the Zen Hospice,
December 24, 2012
1,644 participants came out for the Bay Area Brain Tumor Walk in Hellman Hollow in San Francisco's Golden Gate Park yesterday, donating over $391,000 to the cause, according to preliminary totals announced by the emcee, Renne Richardson.  80% of the donations collected by the National Brain Tumor Society (NBTS) go toward finding cures. Renee, the host of the KFOG morning show, introduced Brett Johnson Ph.D., a brain tumor researcher from the University of California at San Francisco (UCSF), who told us how NBTS funding facilitated his work.

Dr. Johnson explained that NBTS funding "kick starts" his research, which gets government funding if the preliminary results are promising. He described one current clinical trial, a study of a cohort of low-grade glioma patients who received multiple surgeries, followed by chemotherapy with temozolomide.  The study's goal is to find out how temozolomide impacts the mutation of gliomas, using next generation DNA sequencing (NGS) to profile tumor cells.  If you're unfamiliar with the medical terms, cohort is like classmates; gliomas are tumors of the connective tissue of the brain -- and if you must be diagnosed with a glioma, a low-grade is the grade you want; NGS is the term for technologies that accelerate finding nucleotide sequences in a DNA molecule; and temozolomide, better known by its brand name, Temodar, was the "gold standard" chemotherapy for treating glioblastomas (GBMs) in 2011, when Jean was diagnosed.  (It was approved by the FDA in 2005, based on increasing the average survival time for GBM patients from 12.1 months to 14.6 months.)

GBMs are the highest grade of glioma, and the most common and most deadly type of malignant brain tumor.  The NBTS also has an overall goal of doubling the five-year survival rate. As a point of reference, statistics accumulated by neuro-oncology researchers at UCLA show a five-year GBM survival rate of approximately 18%.
   
In addition to Dr. Johnson, UCSF was represented by a fund raising team, including at least one nurse who worked with Jean.  Stanford oncology had a team too, as did Lumosity, a software company producing games that train memory and improve cognitive skills: Jean used their products to tell if the tumor was progressing, with the hope that staying sharp would keep it at bay.  Many teams had names with themes inspired by conquering cancer, such as Team Toast (as in, this tumor is toast), and the Tumor Tamers.  Oligo Nation, which raised several thousand dollars, was started by parents of two children diagnosed with oligodendrogliomas.  The etiology is unknown, and both children are now young adults.  Some team names were just festive, such as the Jolly Rogers, who came in full pirate regalia, and distributed disks the size and shape of silver dollars, heads a grinning skull, tails an open treasure chest.  The Jolly Rogers are named after Roger, a long-term brain tumor survivor, who walked The Walk every year for 10 years. After his death, his widow Dawn formed the team to carry on his fund raising efforts.

The Tatsumaki Taiko drummers provided rousing, festive entertainment after the walkers returned from their trek.  There were two rows of them on the stage, three in back with smaller drums, laying down background rhythms; and three in front on large, two-sided drums, coming in to the performance one at a time, building the intensity as each entered, whirling and gesturing between synchronized drum beats.  Watching, hearing, and feeling their performance, it was easy to imagine burgeoning life force gathering its strength to vanquish tumor cells.

This year I participated as a volunteer instead of a walker, and Oded Angel, a colleague from my Bank of America days, worked along with me.  Oded has been a close family friend for many years, planting a tree in our little orchard after Jean was diagnosed; visiting Jean when she was at the Zen hospice; and remaining loyal and supportive to co-workers, like me, who were sacked in the big layoffs this February.  He has a thing for good causes, and last week he roped me into helping out at the National Multiple Sclerosis Society's Lake Merritt walk.  The problem with befriending such noble souls is that when they say vexing things like "let's go to the brain tumor walk by BART and bicycle," you can't really say no -- even if it requires a little lifestyle shift for a sedentary sixty-three year old.
Oded Angel, at Hellman Hollow
after the Brain Tumor Walk

Truthfully, since Jean passed last year, I haven't ridden anything but a stationary bike, and have even fallen into the slothful habit of driving my car to do short errands. Oded and I met up at the MacArthur BART station at 7:15 am, and then the ride to Hellman Hollow took about a half hour.  I only felt geriatric twice during that journey: carrying my bike up five flights of stairs to street level at the Civic Center BART station; and climbing the big hill going west on Fulton toward the Golden Gate Park panhandle. But let it be recorded, I made it to the top both times without stopping, if not without panting.

When the walking and the speeches and the drumming were over, we stacked and folded chairs and tables, unlocked our bikes, and rode back.  We took Page street east from the panhandle, and stopped when we got to the Zen Hospice, 273 Page Street, corner of Laguna, a couple blocks above Market.  Oded said we were very lucky to find the place.  People always say that.  I said we made the best of a terrible situation, and that in an odd way, that time together at Jean's death bed, saying things we needed to say, was the vacation together we'd needed for a long time.  I always respond like that.  Oded murmured something non-committal, and we changed the topic.  That always happens.

We rolled our bikes into the Page-Laguna Pocket Park, a little gem next to the hospice.  Jean and I came there on two occasions, and Oded heard, not for the first time, the story of one of those visits. We'd stopped by after lattés at the Samovar Café, where Jean, that legendary, uncannily accurate editor, had found several typos in the will prepared by our attorney.  This was near the last stage of her struggle with her tumor, when she could no longer stand up unassisted, and was dismayed to learn she could no longer play the flute. I remember how much she liked the canna lilies.
Pathway at Page-Laguna Park,
Matt Pico's collapsible bike 

They were beautiful yesterday too.  As was the fig tree, and the many flowers whose names Jean would have known, but I don't.  Riding our bikes had been a great idea.  Jean, avid gardener as well as editor, would have approved of us doing our bit to save the planet.  As she would have recommended the Zen Hospice to anyone who values compassionate staff, even to those, like me, whose skepticism clashes with Zen spirituality.  And one year later, I would recommend it too.  Even if the NBTS succeeds in doubling the five-year survival rate -- an ambitious, historic goal -- the vast majority of people with GBMs will not make it that long.  If a brain tumor is poised to take your life, and medical science offers nothing that has already been approved by the FDA, I salute those who refuse to give up, and keep looking at clinical trials; and understand those, like us, who decide instead to look for a quiet, comfortable place to say goodbye.


Page-Langua canna lilies, 2014