Once upon a time it was all about jogging at dawn. Then life interfered – things like glioma and an Achilles tendon injury that required surgery. Now the female DJ is up and jogging at dawn again. The thrill is still there but not the passion about blogging – at least as pertains to the dawn experience. Some good things have taken its place. But what to do about jogging at dawn…
Tag Archives: glioma
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.
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.