It’s Thursday evening, and we had hoped to know by now whether or not Richard would be accepted into the glioblastoma tumor vaccine trial at University of California-San Francisco.
But no.
The packet made it to UC-SF on Monday as we had hoped. Tuesday I got an email from the New Patient Coordinator letting me know it was there, telling me the discs with Richard’s scans were being loaded into their radiology database, and confirming that the packet would go to the director of the clinical practice. He also let me know that Wednesday was clinic, so we shouldn’t expect to hear anything until Thursday (today), probably late in the day. All good so far.
Which doesn’t explain why I woke last night in a panic. I am alarmed at Richard’s increasing slowness at ordinary tasks, his decreasing fine motor skills (buttoning a shirt, for instance, has become a challenge); his increasing difficulty with vision scares me. All that contrast though with his intellect, which still is as quick and incisive as ever, and his bright spirit.
Still, our choices are so painful: Either Richard gets accepted into the clinical trial, loses a large chunk of right brain real estate and takes a vaccine that may give him years instead of months, or his tumor is too difficult to remove and he goes into stereotactic radiation surgery, high, intensely focused doses of radiation aimed at the tumor cells without–we hope–injuring his already challenged right brain, a treatment we can only hope will slow the tumor down.
I got up and tiptoed into the kitchen to get a drink of water and look out at the stars. Saturn was headed west across the night sky, traveling in Virgo, the constellation I was born to. It certainly feels like Saturn’s challenges on my tail these days. (That illustration of the constellation Virgo is by artist Sherrie York, from my memoir, Walking Nature Home.)
Even still, it was comforting to see the night and the stars. I went back to bed and to sleep, thinking today would bring news.
It did, but not the news we expected. I checked my email after returning from a blissful massage, a gift of friend and massage therapist, Jeannie. (She gave Richard a massage yesterday.) And there was an email from the New Patient Coordinator: “We’ve hit a roadblock.” Turns out that the scan discs we waited for, the most important part of the package, did not include Richard’s last two MRIs, the only ones the tumor review board really needs to see.
I nearly lost it. We cannot wait another week to know which treatment to pursue. Richard is coping wonderfully well, but he is tired; I worry that he is dangerously close to losing heart. I clamped down on my panic and went into patient advocate mode, something I’m all too familiar with.
I started contacting anyone I thought might help shake loose those two MRIs–quickly, without going through the usual week-long process. I called the psychologist on the palliative care team at the VA; I emailed Richard’s oncologist (we can’t call her directly, but she does respond to emails); I called the New Patient Coordinator at UC-SF to see if they could access the scans through the back door, the VA Hospital in San Francisco. Richard got into the act too, and called the chief of the Radiology Department at the VA in Denver.
Turns out, Richard’s oncologist and the psychologist for the palliative care team jumped right on it, and the scans were put on a disc this afternoon. They’ll go out overnight either tonight or tomorrow to UC-SF. It’s also possible that UC-SF may be able to access the scans through their connection with the VA Hospital in San Francisco. Whew!
Still, we won’t know for another couple of days whether Richard qualifies for the clinical trial. More waiting.
But this evening, after Richard spent time showing off his shop and his beautiful rock sinks to a potential new client, and friends invited us to come across the street and fill our plates at a potluck featuring Lebanese food, I’m feeling better.
Somehow, some way, we’ll make it through this. I hope we never forget the grace we’ve found along the way. Or the fact that no matter how hard things are, we can always find a way to have fun–like the impromptu self-portrait session in the bathroom mirror, which had us laughing almost too hard for me to press the shutter.