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.
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.