The Next Chapter

Today, Sami completed her first round of chemotherapy and radiation treatments for glioblastoma. In some ways, what seemed like a forever process when she started has gone very quickly; in other ways, I feel like we were both very different people when this started on March 14. 

Our experience with this cancer, at least so far, seems to fit into three distinct chapters. In Chapter One, we discovered Sami’s brain tumor. We were in crisis mode; we reacted to Sami’s developing symptoms, her need for immediate surgery (and for a second surgery when her symptoms worsened), and her recovery from two craniotomies. Chapter One was marked by the need to learn a new vocabulary, by our introduction to the medical-industrial complex, and by the reality that our assumptions about growing old(er) together probably no longer applied.

Chapter Two is just wrapping up. In this second chapter, we settled into a routine of daily radiation and chemotherapy treatments, weekly doctor visits, and her doctors’ periodic confusion about Sami’s various prescriptions. For the most part, Sami avoided many of the most severe side effects of treatment, but as chapter two dragged on, fatigue and weakness caught up with her. We also learned that the last seven radiation treatments are at a higher dose (a “blast,” according to the nurses), which seems to have intensified these side effects. In addition to fatigue, Sami is increasingly weak on her right side. She often searches for words, and seems to have difficulty following some instructions (e.g., recipes). These symptoms take me back to the anxiety I felt in late January, before we knew what was happening. What’s the opposite of foreshadowing? Backshadowing?

The uncertainty of this next chapter, Chapter Three, heightens my anxiety. I don’t know what to expect - will the symptoms Sami’s endured at the end of treatment subside? Will she regain some of her independence? Most of it? None of it? What will the MRI she’ll have in mid-May reveal? Will there be a fourth chapter? For Sami, I think, the question of independence is enormous - I know she’s tired of us watching over her constantly. I hope that this new chapter provides us all with some clarity about how much of our “normal” life we can expect to regain.

The immediacy of our new reality has helped us realize that we can’t put off projects that we’ve talked about for years. I’ve long wanted to have flowers growing by our front porch; we built and planted the flowerbed last week. We’ve wanted to update the front porch itself, too - last week, we replaced the upright supports and built a new ramp that will allow wheelchair access through the front door. Sami is working with a contractor to make our master bathroom wheelchair accessible, as well. We’ve expanded our vegetable garden and planted a small herb garden on the back deck. We’re finally getting new garage doors.

But even these projects, which I’ve enjoyed doing, are suffused with some sadness. I learned a new term from someone else who is caring for a loved one with glioblastoma - anticipatory grief. My grief, I think, is partly for the loss of the future that Sami and I hoped to have. Part of it is for the things that are part of our new reality - for example, the possibility that we may actually need to use a wheelchair ramp. And part of it is the knowledge that we may never get to do some of the things we’ve looked forward to.

Meanwhile, life in the outside world goes on. While I take some comfort in my work, I am finding that my motivation for work comes and goes - there are days when my job is incredibly rewarding; there are other days when I absolutely don’t feel like interacting with anyone, when I can’t concentrate on work. As I’ve written before, I find greater comfort in working with my hands - tending my sheep, or building the new front porch. Cutting firewood and milling lumber. Another caregiver shared something he’s found helpful when his work becomes challenging or overwhelming - he tells himself (and others), “There are no big deals.” I’ve tried to remember this over the last several weeks, when situations or people at work seem to demand to be a “big deal” - they really aren’t, compared to what our family is experiencing. I’ve also adapted a decision-making matrix from Steven Covey and put it above my computer at work - things that are important and urgent get done now; things that are important but not urgent get scheduled for later. Things that are unimportant and not urgent get ignored.

On May 17, we’ll head back to UCSF to find out if Sami can enroll in a vaccine trial. Her first post-treatment MRI will be read by the UCSF doctors, and we’ll have a better sense of what our immediate future might hold. For now, I feel like we’ve stuck a bookmark between the end of Chapter Two and the beginning of Chapter Three.