At the end of May, we took Sami to the emergency room in Roseville - our third trip to the ER in four days as Sami wrapped up her first maintenance course of chemotherapy. The following morning, Sami was transferred to UCSF - she was in San Francisco for just over three weeks (the better part of June - at UCSF for treatment through June 11; at Saint Francis Memorial for rehab until June 20). While I made several runs home during that stretch - for Sami’s chemo medicines, for a work meeting, and for my own sanity - I mostly stayed in San Francisco, too. One evening, over dinner (from the Trader Joe’s around the corner from Saint Francis Memorial, a welcome break from cafeteria food), Sami and I talked about what we were most looking forward to doing when we returned home. And we talked about Sami’s wishes for being home from this point forward.
As big cities go, I actually kind of like San Francisco. The combination of hilltop landmarks and a street system laid out on a predictable grid (for the most part) helps a hayseed like me navigate. I find that I need to see the horizon to know where I am; that’s why I love open country. But staying in The City (as we Northern Californians refer to San Francisco) wore thin for all of us. I found myself wanting to wake up in the morning to the sound of birdsong and the hungry mules in the barn, rather than honking horns and the hum of the hospital. When I woke up in the middle of the night (which is a regular occurrence in my mid 50s!) I wanted to hear the great horned owl that roosts in the gray pine near our bedroom, or the coyotes singing (hopefully not from the back pasture), rather than sirens and squealing tires. Sami was looking forward to these things too - and to enjoying the sunshine from our back deck, and being in our vegetable garden.
We had to work on some logistics when we got home for Sami to be able to do these things. When we left home in late May, the swelling in Sami’s brain meant she was unable to walk. Thanks to the treatment she received at UCSF, and the occupational and physical therapy she had at Saint Francis, she made progress towards walking again, but her mobility still requires a walker and a wheelchair.
In talking about home one evening while we were at Saint Francis, I asked Sami a difficult question, one that I’d been avoiding. I asked her if her symptoms worsened again, if she wanted to come back to the hospital. We’d danced around this question a bit when we decided to go to UCSF in late May - all of us know what glioblastoma means with regards to a long-term prognosis. The deciding factor in late May was that the UCSF team told us that they weren’t ready to say they couldn’t help Sami feel better again. While Sami’s progress has felt exceedingly slow, she has started to feel better, thankfully - but the right-side weakness and brain fog persist. As I write this, two-and-a-half weeks after returning home, someone needs to be with Sami all of the time.
Sami told me that evening that if things get worse again, she wants to stay at home, with the help of home-based healthcare, and ultimately, with hospice care. These conversations are exceedingly difficult, and exceedingly important. Sami and I have both signed advance directives that state, “I do not wish to artificially prolong the process of my dying if continued health care will not improve my prognosis for recovery or otherwise enable me to live a productive and/or enjoyable life.”
Part of our conversation that evening revolved around the last part of this sentence - what is a “productive and/or enjoyable life?” Each of us probably has a different definition; for Sami, she said she missed working. I would to - we’ve both been fortunate to get to do work that we are passionate about, work that fulfills us. I missed working while we were in San Francisco; I can’t imagine what it would feel like to know I wouldn’t be able to work again.
In another section of our advanced directives, Sami and I give each other the responsibility to make decisions about these matters in the event we ourselves are incapacitated. We talked about what this meant when we worked with our attorney to draft the language many years ago; reading this language now is more sobering. How will we know? What do we mean by “incapacitated”? Incapacitation isn’t an on-off switch - now that I’m faced with this in reality, it seems like an awesome responsibility. How will I know if taking Sami back to the hospital will “artificially prolong” her life without any prospect for productivity or enjoyment? What exactly do we mean by “quality of life?”
Throughout this experience, I’ve been reminded of one of my favorite pieces of fiction by Wendell Berry, a story titled Fidelity. I won’t try to summarize it here, but it is perhaps the best thing I’ve ever read about the conflict between our medical system and our sense of humanity and community. I encourage you to read it. As a livestock producer, I suppose, I’ve always thought about what death means - biologically, emotionally, and spiritually. To paraphrase my friend and fellow sheep rancher Al Medvitz, death is not the opposite of life. The process of dying, however, can be frightening and incredibly difficult. As I think about what Sami and I are really trying to express in our advance directives, it might be that we both, to the extent possible, want the final steps in this process to happen at home, with our loved ones around us. As Berry’s story suggests, the entire insurance-medical complex is arrayed against us. But I feel like we are home for good.
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