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| Jean Lewis at the Page-Laguna Park, next to the Zen Hospice, December 24, 2012 |
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.
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| 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.
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| 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.
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| Page-Langua canna lilies, 2014 |
