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…
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.
Even when you’re somewhat prepared for the news, it can be jarring. The Dual Gs rose earlier than usual this morning, turned on the TV and the somber broadcasters dressed in black and shot of Hyannis Port compound said it all, Senator Kennedy had died.
Brain cancer is a relatively rare form of cancer in the United States; the annual incidence is 15-20 cases per 100,000. Because of that most of us don’t personally know anyone with the disease. So when someone famous gets diagnosed – and flies in your team of doctors for a consult early on – it’s hard not to feel a kinship, that you’re some how on this journey together, that you know what the person and his family is going through. That others “get” this was apparent by the number of emails already received this morning, expressing: “hope Chris isn’t taking Kennedy’s death too hard.”
The female DJ isn’t sure how the Senator’s death will affect the male DJ. She heard only a sigh from him as they watched the TV in silence, viewing highlights of Kennedy’s life (their lifetime) flash across the screen (although he later comment on his blog). For herself, she’s going with mass sentiment: “In lieu of flowers, pass health care reform.”
Today was both a “glioma day” and two weeks post Achilles tendon surgery.
The trek up to UCSF for MRIs and appointments with the neuro-oncology team headed by Dr. Susan Chang is a staple of the Dual G’s (gimpy and grumpy) life and not something that can be put on hold just because there’s another gimp in the house. So they headed up to UCSF’s Mission Bay advanced imaging facility this morning and were warmly greeted and well cared for by clinical research nurse coordinator Bert Jimenez. (pictured). On tap was an MRI with MRS (magnetic resonance spectrum, which measures blood flow in the area; something you don’t want to see too much of going into a tumor). The male DG’s 90 minutes in the tube has been more frequent since March when his of doctors noticed “a change” on his scan. Three scans later, they don’t believe it’s tumor growth but rather increased edema. Either would explain the decreasing functionality on his left side. While they usually get the results the same day, this time they won’t know until next week.
Thanks to WIFI throughout Mission Bay, the female usually retreats up to the pleasant cafe on the third floor of the Genentech building while the male DG’s brain is being scannd. But today, with no work assignments due, she decided to head out for a tour of the campus and scootered her way just south of the Left O’Doul/3rd St. bridge that spans McCovey Cove adjacent to the Giants ball park. Yes, she’s forever cheered by baseball, expecially the kind of ball the men in orange and black have been playing the last week or so. She broke no speed records and hardly a sweat, but it was at least moving – and the longest distance she’s covered since going under the knife. Any good she did was undone with s stop at Peasant Pies for a couple of its savory delights. More damage to come tonight – she brought some sweet pies to go.
Last thought: kudos to the “angel” aka UCSF employee who happened to be visiting the advanced imaging center on her break and took the male DG’s two pies up to her office to microwave so that he could have lunch.