Brain Cancer: And we thought it was simple…


There is news, and it’s complicated. We had a long–and I think, ultimately very helpful–phone call from the Director of Clinical Services in the Neuro-Oncology division of University of California-San Francisco. I’m still trying to get my head around all he said.

In sum: Richard does not qualify for their vaccine clinical trials. First, because his tumor began as an astrocytoma (a lower grade of brain tumor) before becoming  a glioblastoma. (Remember statistics? In order to rule out a complication, only one type of brain tumor is allowed in the study.) Second, the area of Richard’s brain involved in supplying blood to the tumor is huge, essentially his entire right hemisphere. To remove 90 percent of that would be risky and could mean Richard’s quality of life would be seriously impacted. 

So. Where does that leave us?
I asked the doctor if he would recommend stereotactic radiation surgery, and if not, what he’d suggest. His answer to the first question was an emphatic no, again because of the size of the area of brain involved, which makes radiation as risky as surgery in his judgment. Also because he thinks Richard’s current issues with brain function are mainly due to the swelling related to the growing tumor commandeering his right brain’s vascular system. Stereotactic radiation surgery would not resolve the swelling issues, the doctor thinks, and could in fact make them worse. 

His suggestion: A course of Avastin infusions, “a month, followed by a scan to see how well it’s working, and then perhaps another month if necessary.” We had considered Avastin, a chemotherapy drug that slows or stops tumor development by shutting off the tumor’s ability to take over and multiply the brain’s vascular system, last fall and rejected it  because we had read about some pretty horrific side effects. Why consider it now? Because of the swelling in Richard’s right hemisphere, which is seriously impacting his brain function. It seems like addressing the swelling–and slowing the tumor growth– as quickly as possible is critical.

I asked about side effects, which include heart attack, stroke, and sudden death. The UC-SF clinical practice director said he’d been administering Avastin for 12 years and had never had a patient die from side effects. Okay… He also said that Richard is at low risk for the nastier ones because his cardio-vascular system is so healthy: his blood pressure is great, he has no history of heart attack or stroke, and his scans don’t show any sign of bleeding from the two brain surgeries in March. 

The timing of the doctor’s suggestion is interesting: Avastin can only be administered more than 28 days after the most recent surgery. It’s 23 days today, and we’ve got a consult coming up with Richard’s oncologist. 

So. We’ll talk  with Richard’s  oncologist soon, and the possibility of Avastin infusions will be part of that conversation.

Something needs to happen soon, because while my love is generally in good spirits, the left side of his body (controlled by that challenged right brain) is beginning to show some serious “deficits”: his left hand is less coordinated, the left side of his face sometimes droops, he misses things in his left-side peripheral vision, and today he had a moment of slurred speech. Yikes.  Fortunately, the slurred speech disappeared as soon as I made him sit down. All together, it’s pretty blinking scary right now  being his companion/caregiver. 

Sometimes I fall apart and loose my temper. Sometimes I wake in the night and can’t find sleep, trying to sort through all that’s going on. And yet…

I haven’t lost my faith in miracles.

Because despite his deficits, Richard’s spirit continues to shine brightly,  as is evident in the photo at the beginning of the post, which was shot by my cousin Halvard yesterday afternoon in Salida’s Sculpture Park, where we were admiring Richard’s sculpture, “Matriculation.

How could I not have faith in that smile?


(That’s Halvard in the photo below with my 82-year-old dad, exploring the old railroad yards across the river from town. Halvard came to the US on a last-minute business trip this week, flew to Denver to visit Dad, and the Tveit/Tweit “boys” drove up to Salida yesterday for a whirlwind overnight visit. It was a treat to have them here, if a mite exhausting for their hostess…)