from Kali
Two weeks ago, which feels like months now, Ken and I drove back to Ballard in Friday rush hour traffic tense and a bit shaken after receiving the discouraging initial MRI reading and suggested treatment. Although his doctor had suggested a next step (cyberknife–intensive radiation), I felt unsettled by the fact that this was still a short-term solution and it just felt like playing wack-a-mole. I kept having a nagging suspicion that even the most well-meaning doctors can default to the mindset: if my tool is a hammer, then everything looks like a nail.
But after the first 24 hours of sitting with it and wondering what else was out there, we plunged into the deep end of clinical trials and research. After calling upon family friends and people Ken was fortunate enough to have met earlier, we learned valuable tips like which programs to contact, which doctors were particularly helpful, what terminology is used in the clinical trial database, what therapies are showing promise and what other resources should we be looking at. We hit the ground running and we were able to get on the radar of over 8 programs across the country and seek two separate second opinions which provided nuance and a more hopeful reading of that ominous MRI. Every day in the past 2 weeks has brought a new revelation or pathway or door to knock on, and every day I am grateful to the individuals who have encouraged us to keep going and given us tips and support to keep reaching. We are far from done and have expanded our medical team to include some pretty kick-ass experts. That makes me hopeful and determined to keep pushing, because if there is anything I’m good at, it’s that.
from Ken
At this point I’m skipping cyberknife radiation for now in favor of the possibility of a second brain surgery. The rationale is threefold…
1) more radiation would risk more language aphasia, e.g. trouble remembering the names of people I care about (yes, that’s you)
2) by radiating the contrasting cells of my recent MRI we’d never know how much is scar tissue vs more cancer cells (valuable info for guiding subsequent treatment)
3) surgery will yield more biopsy and cell samples which could help support possible future clinical trial options.
I’ll spare the many more details of our decision to simply say how EPIC Kali has been coordinating our connections with the 8 prodigious brain cancer hospitals and medical organizations across the country. I couldn’t be more grateful or fortunate to have her as my partner.
More details to come in the next few weeks.