Long ago if someone had asked the female DG how endings begin, the last answer she might have guessed was “order hospice in the morning and go to a rock [well, sort of rock] concert in the evening.” The DGs are still trying to understand – and come to grips with – what it means to know you are spending your last days together.
Today they took another step in that journey. They had decided over the weekend that, given the four tumors now growing in the male DG’s brain, there was little to be gained in continuing chemotherapy, even if it might have some palliative benefit. They talked about the possibility it could also mean prolonged suffering and no improved mobility. . “We had the good sense to put Cassie [their beloved Australian Shepherd] down when she was in this state,” said the male DG matter of factly.
So this morning the male DG called the great UCSF neuro-oncology team headed by Dr. Susan Chang and said, in slightly more words, “Enough.”
But that just started the day. They went on living. Mundane household chores. Another inspiring InMenlo interview. And finally a trip back in time when Carole King’s Tapestry was the best selling album of all time (since replaced) and Jame Taylor’s Fire and Rain was number one on the charts. Here’s the good news: Those that gathered to hear the Troubadour Reunion tour may have been long in the tooth, but the performers were in great form. And no, going to a concert after ordering hospice was not in the script…
It was a UCSF day today. That means an MRI and visit with neuro-oncologist Dr. Susan Chang. The female DG stuck to her regular game plan of walking around Golden Gate Park while the male DG had his head in the MRI machine. Unlike most weekday mornings, the carousel at the eastern edge of Golden Gate Park was open, thanks to the summer season. The female DG went down the hill to take a look at the excited line of children waiting to get on. Then she got on, too, and rode it around, feeling a bit silly being an adult unaccompanied by a child.
It was sentimental and symbolic. She’s been riding this carousel since she was a child and always loved that the animals weren’t just the usual horses. She remembers riding the rooster and the goat. She also knew that it was likely they wouldn’t be getting good news today; the male DG has experienced increasing weakness and decreasing mobility. The MRI confirmed their worst fear; where once there was one brain tumor, there are now four. Dr. Chang hugged them both – not a good sign. They are prepared but not really, as they move into unchartered waters of sharing what they know will be their last months together. Ok, the whole situation sucks…
It was technically not a First Blush walk, as the female traded in her DJ status to be part of the Dual Gs who made their way up to San Francisco for what they call a “UCSF day.” All appointments were completed expeditiously but started very early this morning. And the news was good; the MRI showed no sign of the tumor, well, doing anything but just sitting there. “The tumor looks good,” is how neuro-oncologist Dr. Susan Chang says it. (Having a tumor sitting in a brain really isn’t good, but the DGs understand her meaning.)
Their journey to the City started about the same time the female DG goes out on her morning jog, so she decided to take a walk during the male DGs MRI. Golden Gate Park conveniently located just down the hill from UCSF . The rain cooperated – staying away for a route that included a spin through the San Francisco Botanical Garden, where the daffodils were poking through the winter soil. Her Uncle Stuart was a gardener in the Park but whether he ever tended the plants on display in the the Botanical Society’s garden, she ‘s not sure. Evidently deep budget cuts are threatening the garden’s maintenance preservation; an admission charge to visitors who don’t live in the City is one solution. Having those free, open gates makes it easy to take a quick spin. But she understands…
So once upon a time blogs were used to quickly communicate to the network of followers. But by the time most of G&G’s readers see this post, they will already have the headline. Good news up at UCSF today – tumor remains quiescent and no sign of that troubling surrounding edema that brought the house down last summer at the height of gimpy and grumpiness. The male DG forget to get the CD so gulker.com readers may be spared one more MRI image of his brain. The most important viewer, Dr. Susan Chang, was delighted with what she saw and that’s what is important.
It struck the female DG immediately when she looked at the photos she snapped with Lumio (her trusty Lumix camera): How many times had she captured the male DG in his red jacket (it’s always cold at UCSF – or almost always) and blue UCSF cap looking at the just taken MRI of his brain. Today the news – delivered by longtime UCSF neuro-surgeon Dr. Michael Prados, who they had not met before – was good. The tumor area continued to diminish. As Dr. Susan Chang has expressed before: “We’ve stunned it.”
That was really the second good news of the day. The female DG had an appointment with physical therapist extraordinaire Heidi Engel, who pronounced her surgically-repaired Achilles tendon good enough to start walking (but, of course, not overdoing.)
Because the male DG’s appointment for an Avastin infusion at UCSF Mt. Zion was hours away, they went down the hill in an easterly direction and found themselves in France. Well, it really was Cole Valley but eating lunch at Zazie was a darn close approximation as was their trip to Say Cheese, where in addition to picking up an assortment of goat cheeses for their at home picnic dinner tonight, they stumbled upon a hard-to-find 2005 Burgundy, a Gevrey-Chambertin (just a “villages” but a treat nevertheless).
How many people in the Bay Area know that the one of the best views of San Francisco – stretching from ocean to bay (looking west in posted photo) – is from the neuro-oncology/neuro-surgery clinical offices at UCSF? More poignantly, how may people have had the opportunity to enjoy it as many times as the Dual Gs? The female DG wondered these thoughts this morning, ensconced in her favorite cube on the 8th floor of 400 Parnassus (complete with great WiFi access).
Glioblastoma multiforme (GBM) is the most common and lethal form of brain cancer, so many of the patients who make their way to the 8th floor have, even with the world-class treatment offered by the team at UCSF, a limited life span. Unlike the male DG, they aren’t as lucky to find themselves still sitting in the waiting room three years after diagnosis (albeit the still serious but less lethal “stage 3 glioma”).
By the end of the day, she also knew within every bone and muscle, that being a patient (or the spouse of a patient) is exhausting. The Dual G’s totally agree on that. Today it was all about the male DG’s brain – MRI, appointment with neuro-oncologist Dr. Susan Chang and then Avastin infusion. For the record, the news was good; the MRI showed that the edema “cloud” (that is the female DG’s word for the liquid that had been surrounding the male DG’s largely quiescent tumor) had disappeared. They were pretty much aware of that, thanks to the male DG’s increased left side functionality, but it’s always good to get clinical validation.
What continues to surprise the female DG is the inconvenience of being a gimp, which she remains about 10 weeks after surgery to repair her left Achilles tendon. The conveniences of life – dropping the male DG off and parking the car blocks away and easily walking – is now an inconvenience of life. She hates that the tendon continues to bark. She is not a patient person. She knows there is no alternative but to continue healing a day at a time.
One of the things that has struck the female Dual G (gimpy and grumpy) every since the male DG was diagnosed with glioma (the most common kind of brain tumor in adults) almost three years ago was how exhausting it is to navigate the health care system – whether that means just wading through the bureaucracy or actually being a patient. It was a bit of both for the male DG today, with the female DG scooting along at his side (not always heroically).
They headed up to UCSF for three back to back appointments. The male DG had volunteered to have an MRI of his brain in Mission Bay’s 7 Tesla machine, which he explains in advance on gulker.com. This is a HUGE machine and an incredible undertaking for someone who was very claustrophobic [only] 30 plus MRIs ago. That’s how they began their day. Then it was on for an appointment with neuro-oncologist Dr. Susan Chang for a in depth look at the results of his August 7 MRI that showed pronounced edema, which is thought to be the culprit in his markedly decreased left-side functionality. And finally, it was over to the Mt. Zion infusion center were he was treated with the VEGF inhibitor drug Avastin to combat the edema and tumor. Clock that almost 12 hours from departure to return – a long day for healthy people.
Amidst that long day arrived an angel by the name of Lina Gomez (pictured with the male DG) who is part of the UCSF neuro-oncology team. Lina is not a new angel but a long standing example in the DG’s lives of how health care works – when it works. Appointments get made, follow through happens, coordination is assured – all with graciousness, respect and a smiling face.