Time

As we continue to navigate Sami’s journey with cancer, time continues to behave strangely. Driving home from work yesterday, a song came up on my playlist (Traveling Alone by Jason Isbell) that I hadn’t heard since our trip to New Mexico in late January - before all of this began. I teared up; the song brought me back to a time and place in which I was ignorant of what lay before us. Back when things were as normal as they’re ever likely to be again. 

This morning, Sami completed her 23rd radiation treatment - only 7 more to go. What seemed like a never ending stretch of daily trips to the doctor on March 14 is nearly completed. We said goodbye to a fellow patient this morning who was having his last appointment. Sami will be that patient soon - we’re looking forward to being done with this stage! The side effects were mild at first, but they’ve been building over this last week or so - mostly fatigue and hair loss, but a few that are more significant too. 

But I’m also looking forward to the end of radiation with some trepidation. We are learning that glioblastoma is not a cancer that goes away. Nobody is ever really “cured” of a glioblastoma; rather, we try to manage the symptoms and eventual regrowth as much as we can. And for a Type A personality like me, management means action. Management means doing something. The end of radiation means we’ll be waiting and doing (seemingly) nothing. I hope I don’t drive Sami crazy with my impatience! 

One of the things we ARE hoping to do is enroll in a clinical trial at UCSF. If Sami qualifies, this means we’ll be transferring her future care to some of the best neuro oncology doctors in the world. While she may not get the experimental treatment (in other words, she may be in the placebo group), joining the trial will certainly upgrade her care. This would mean trips to San Francisco every several weeks this summer, and less frequently through the fall and winter. Our fingers are crossed!

In the meantime, as her initial treatment wraps up, we are grateful for the care she’s received from the Sutter Auburn Radiation Oncology Clinic. The doctors and nurses have been empathetic, responsive, and incredibly friendly - definitely in contrast to our experience with her medical oncologist (who’s managing her chemotherapy). Early on, her medical oncologist told us he’d be the “quarterback” for her care, coordinating with all of her other doctors. I should have asked which team he played for and confirmed that he wasn’t the back-up quarterback. We've become increasingly frustrated by the lack of response from his office.

As I said at the beginning, though, time continues to behave strangely. Some weeks fly by; others (like this) seem to drag on forever. I can’t believe we’ve reached mid April (usually, I’m looking forward to starting our irrigation season by this date). By the same token, I can’t believe that all of this began just 70 days ago as I write this. The “before” time seems like it was ages ago.