“You’re Up One Day…”

Since posting “Our Last Two Weeks” in early February, Sami’s condition, our understanding of what it means, and its implications for our family have continued to evolve. I want to begin by thanking all of the friends - real-life and virtual - who have reached out since my original post. And for all of the help our family has received - despite this scary diagnosis, we are truly blessed to be part of our immediate and extended communities.

Sami came home from the hospital just five days after having a craniotomy on January 28. For the first several days, she used a walker to get around. Both Lara and Emma returned to their homes (Lara to New Mexico, Emma to college in Idaho). Here in Auburn, Sami and I walked outside most mornings, and started trying to understand Sami’s treatment options. I worked on keeping the house clean (not my strong suit) and keeping track of doctor’s appointments.

On Sunday, February 12, Sami felt pretty lousy. She stayed in bed most of the day, and began telling me she had a headache. That evening, I called the surgeon’s office and talked to an on-call doctor, who suggested we wait and see how she felt in the morning. When she felt no better on Monday morning, he said we should go to the emergency room.

Once there, the ER doctor ordered blood work and another MRI. Later that morning, another neurosurgeon came to see us. He asked how long ago Sami’s first surgery had been, and his face dropped when we told him it had only been 16 days prior. He showed us the MRI results, which indicated the tumor had already started to regrow. He also told us that he’d seen the final pathology report - the diagnosis was a Grade 4 Glioblastoma - a more advanced and faster growing tumor than the original preliminary diagnosis. He said Sami’s options would be to start radiation as soon as possible, or to undergo a second craniotomy. If the first trip to the hospital was a gut-punch, this felt more like a kick in the teeth. We asked for some time to talk things over.

Ultimately, with advice from the radiation oncologist (whose office has been the most empathetic and responsive throughout this process), Sami decided on a second surgery. Unfortunately, for some reason her platelet count was down, which meant she needed several infusions before she could have another craniotomy.

Once Sami’s platelet count was back at an acceptable level, we were told we were an “add-on” surgery (implying Sami’s surgery was not an emergency) - all I could think about was that the tumor was continuing to grow while we waited. The surgery was tentatively scheduled for midday on February 14. It was pushed back three times that day before being canceled. It was rescheduled for midday on February 15, and pushed back twice more. We didn’t get any information from the doctors or the hospital until I started asking some fairly pointed questions. Finally, on that afternoon, Sami had the second surgery. This time, armed with a second MRI, the surgeon felt like he had been able to remove as much of the cancerous tissue as possible.

While I’m sure my own fatigue played a role in what transpired after this second surgery, Sami’s care was not a shining moment for Sutter Roseville Medical Center. The care she received from the nursing staff, both in the Neuro ICU and on the surgery recovery wing, was outstanding; the support we received from the doctors and caseworkers was not. Just two days after her surgery - when Sami was still having a great deal of difficulty walking and thinking - the neuro critical care doctor told us she was ready to be discharged. A caseworker from the Sutter Rehabilitation Institute was on hand for this conversation, and told us Sami could go directly to that facility for intensive rehabilitation. The downside of this, she explained, would be that Sami couldn’t see any of the oncology doctors we’d talked to in Auburn until she was discharged. The whole conversation was surreal and felt somewhat threatening - our family felt like we’d suddenly ended up in some version of a healthcare matrix. In retrospect, I think the doctor and the caseworker were working together to point us towards the rehabilitation center rather than sending Sami home - to some degree, it felt like Sutter was more worried about its bottom line than about Sami’s well-being. With help from an amazing ICU nurse, we pushed back and insisted that Sami stay in the hospital for a few more days, with the hope that she could come home upon being discharged. We also began to work to line up home healthcare help.

Thankfully, Sami came home on February 20. Again, for the first several days, she used a walker to get around our house - she was considerably weaker after this second surgery. Both Lara and Emma made arrangements to be home - Lara is able to work remotely, and Emma will be able to finish her semester virtually. Every day, Sami gets stronger - mostly due to her own determination, but we’ve appreciated the help we’ve received from in-home occupational and speech therapists. And we finally have a treatment schedule and an appointment for a second opinion at the University of California San Francisco (one of the top neuro oncology centers in the U.S.). Sami will start radiation and chemotherapy in mid March.

During Sami’s second stint at the hospital, our sheep began lambing. My friend Roger Ingram took over daily checks and fence-building chores; my friend Ryan Indart, whose sheep operation is in Fresno County, offered to take the bulk of my ewes at least through weaning in late spring. I kept 15 ewes (most had already lambed) here in Auburn, mostly for my own sanity. Last Wednesday, the day we shipped the ewes to Ryan, was rough - seeing my sheep go up the road in someone else’s trailer was difficult. But the decision - and the day - was made easier by the friends who came to help. Talking with other friends who’ve gone through similar experiences has made me realize that accepting help is a gift - to me, especially, but also to those offering to help. Similarly, accepting the gifts of food and help with our animals here at the house has made me realize how lucky we are to be in such a community.

One of the results of writing my last post has been the opportunity to connect with friends (and friends of friends) who have faced similar diagnoses. These folks have also been gentle and kind with us - they’ve given us space to process our own personal experience, assuring me that they are willing to talk whenever I’m ready. At some point in the next several weeks, I hope I’ll be ready to have these conversations.

Living day-to-day continues to be challenging for all of us, but we’re working on it. At some point during my commute to Roseville during Sami’s second stay in the hospital, John Prine’s song “That’s the Way that the World Goes Round” came up on my playlist:

“That’s the way that the world goes round, you’re up one day, the next you’re down….”

And that’s how this experience has felt. Some days, when Sami’s feeling strong and positive, and when we have positive interactions with her healthcare team, we all feel up. The next day, when the doctor’s office won’t return phone calls, or when the pharmacy fails to refill a prescription, or when our insurance company sends a confusing email, we’re definitely down. I suppose that’s the nature of living through an experience like this.