Crisis after Crisis

Our journey with Sami's glioblastoma has taken another turn over this last week. Sorry if this post is bleak - I suppose it reflects where we are at the moment. I'm not seeking sympathy; rather, writing this helps me process what's happening.

As I write this, I’m sitting with Sami in a hospital room on the fifteenth floor of the UCSF hospital. It’s Saturday morning; we’ve been here since last Tuesday. I feel like I’ve been holding my breath since we got here; I finally exhaled this morning.

A glioblastoma diagnosis is a crisis for any family; our experience since Sami’s symptoms first appeared in late January seems like one crisis after another. A roller coaster of brain surgery, another brain surgery, recovery, chemo and radiation therapy, seizure, another seizure, and ultimately the partial paralysis and brain fog that brought us to an emergency room in Auburn, then in Roseville, and on Tuesday morning, to UCSF.

The latest crisis began with Sami’s first round of maintenance chemotherapy (5 days of taking the drug Temodar, followed by 23 days off the drug). The first dose made Sami nauseous, so she also started taking a new nausea drug. On the morning before her last dose, Sami suffered a clonic tonic seizure. She got to ride to the ER in Auburn in an ambulance. A CT scan revealed what we expected - significant swelling around her brain.

Over the next several days, Sami grew progressively weaker on her right side. She started needing a walker again for the first time since returning home from her second surgery in late February. By Sunday, she could barely use her right side at all. We returned to the ER in Auburn, where another CT scan showed continued edema. They sent us home.

Monday arrived. Sami still felt lousy; by Monday evening, she was unable to get out of bed even with the walker. After a few minutes of agonizing about what to do next, we drove to the ER in Roseville - a larger hospital, we hoped, would offer more advanced care. And in the back of our minds, we hoped we could get a transfer to UCSF.

When we arrived at the ER in Roseville, we were greeted by the same doctor who’d seen Sami in Auburn the day before. He looked at Sami briefly, and then called me aside. “She looks much worse,” he said, adding, “I’m sure you realize that there’s no cure for glioblastoma.” He went on to say that sometimes the doctors in places that specialize in treating these kinds of diseases don’t like to admit their inability to provide a cure. After saying he’d order another CT scan, he finished our talk by telling me, “You may want to consider calling hospice. Tonight.”

Needless to say, we were devastated. I decided to call the on-call doctor at UCSF with whom we’d been communicating all weekend. She told me it was a little early to make this decision, and indicated that we could ask for a transfer to UCSF. We communicated this to the doctor in Roseville and settled in to wait. A little more than 12 (mostly sleepless) hours later - at just after 8:00 on Tuesday morning - Sami was taken to UCSF by ambulance. Emma and I ran home, fed our animals, packed our clothes, and headed for San Francisco ourselves. Lara, who had arrived home in Las Cruces on Sunday, flew into San Francisco late that evening.

When Emma and I arrived, we learned from Sami’s nurses that she’d be hooked up to an EEG monitor to determine if she was still having seizures. She was also scheduled for an MRI. During our first several hours here, I talked by phone to a physician’s assistant and a neurosurgery resident, but we didn’t actually see any doctors for nearly 24 hours after we arrived. I realize now that this kind of condition requires a great deal of technology to diagnose, and that we were simply waiting on the doctors to review Sami’s MRI and EEG; at the time, it felt like we’d left the inattention of the Sutter Roseville Emergency Room for the inattention of the UCSF Neurosurgery ward. Communication is so important in these situations; I get so frustrated when nobody tells us what’s going on. At least the view was better - Sami’s room looks west toward the ocean.

Finally, yesterday, we had a long talk with a nurse practitioner from the neuro oncology clinic overseeing Sami’s treatment. We learned that the EEG revealed that Sami was continuing to experience subclinical seizures - seizures with no outward symptoms but that continued to irritate her brain. We learned about something called Todd’s paralysis, which can affect patients who experience seizures. We learned that Sami might be able to get a different kind of treatment for her cancer (a drug called Avastin) that would quiet her brain, relieve the swelling, and help her regain the use of her right side. And we talked about the value of a short stay in an acute rehabilitation facility that could help improve Sami’s physical condition. Following our video chat, we had a family meeting and decided to move forward with the alternative treatment and rehabilitation. Emma stayed with Sami for the night; Lara and I walked to the home of some friends who had graciously put us up all week. I think we all felt like we were finally making progress - perhaps the latest crisis was winding down.

But this morning when I entered Sami's room, she was still in a deep brain fog. When the nurse came to help her get out of bed, she could not make her right foot work. In many ways, to our non-medical eyes, she was exactly where she was when she arrived on Tuesday. Her care team tells us she's making progress, but I'm struggling to see it.

During the course of this week, in talking with my sister, I said I just wished that Sami and I could have one more normal day together. My sister reminded me that we’d been dealing with this, largely without letup, for more than four months. Later, Lara reminded me that she and Sami had hiked four miles from Auburn to No-Hands Bridge over the American River and back in March. I recalled that Sami and I had been able to have lunch in Truckee in April - so I guess we have had some normal days. But even with these brief respites, the crises keep coming. The bright spots seem to disappear into the haze of worry and crisis management. And as I sat with Sami in her hospital room this morning, I was again overwhelmed by a sense of sadness and fatigue.

Glioblastoma is a particularly cruel disease. It is fatal - eventually, it kills everyone who has it. For us, with this latest crisis, this reality has been especially difficult. We all hold out hope that this new treatment will give Sami some measure of independence and all of us a handful of normal days. We hope this new treatment will clear Sami’s brain fog and rebuild her strength and coordination. But we also know this window will close; eventually, the symptoms that Sami has experienced over these last two weeks will return and intensify. When I got to the hospital and realized that despite the video appointment we’d had yesterday, the new treatment wouldn’t begin until Monday at the earliest, my sadness and frustration deepened. Watching Sami struggle to clear her mind, watching her struggle to move and even to explain how she’s feeling, makes me feel like we’re still in the midst of this current crisis. And it makes me fear the crises to come.