Brain cancer: A lonely journey

  Nineteen months ago tomorrow, Richard and I were driving down a dirt road at the edge of the San Juan Mountains in southwestern Colorado, headed for a two-week artist/writer residency in a remote cabin tucked in an aspen grove. We were looking forward to two weeks of “time out” to work on our art–my writing, his practice of sculpture that draws on local rocks as “ambassadors of the earth.”


As we pulled away from the rural co-housing development where we had been staying courtesy of F/friends,* Richard said, “What’s with all the birds?” I looked around the dry grassland, the rabbitbrush and sagebrush shrublands, and the polka-dot pinon pine and juniper woodland on the surrounding mesas and saw nary a bird.

“What birds?”

He enumerated: birds beak-to-cheek lining the barbed wire fences and utility wires, tiny birds on every blade of grass and every piece of gravel in the road, huge ones perched on distant mesas.

Only they weren’t there. The hundreds of birds–all black, all approximately the shape of blackbirds–existed only in Richard’s mind.

We didn’t get to that remote cabin in the aspen grove. Our “residency” took us to the VA Hospital in Denver instead, and eventually to Richard’s diagnosis with brain cancer. The birds persisted about 24 hours, just long enough for me to convince him that he needed medical attention.

Our journey since then defies summary. The data give a sense of it: five hospitalizations, three brain surgeries (including one lobectomy), six weeks of radiation, five months of chemotherapy, two temporary drains from his right brain, one trip over the mountains via ambulance, and not a single month without a trip to Denver for a test, scan, or consult.

A friend who survived colon cancer wrote to say that his experience felt like he and his wife had “entered a black hole” all by themselves. He went on to say, “although people were wonderful and helpful, it’s hard to communicate into a black hole.”

I know that black hole now. Any journey that involves repeated trauma of whatever sort is essentially private. No one else can really know what it’s like, and what you go through. Nor would they want to, because to really know it is to experience all the pain and fear and exhaustion, the ugly and difficult moments, the darkness when you’re not sure light will ever return.

Tonight, this journey feels very dark, and very solitary.

Richard got up this morning with a mild headache, and has had another bad brain day: he’s been slow at times, had some confusion, hasn’t been able to juggle well, and he’s slept a lot. He’s also had good moments. The headache gradually ebbed over the course of the day, and he’s been up and doing stuff: slowly working on accounts, calling his mom and our Molly, hanging out laundry, smashing a ripe avocado for guacamole, listening to and giving astute critical feedback on this blog post…

What feels so dark and lonely right now is the judgment call we need to make: when a bad brain day is too bad, meaning he’s slid over the narrow edge between a day that just represents a bump in the recovery process and a day when recovery has been overwhelmed by excessive fluid accumulation that could, without attention, turn fatal.

He can’t see the progression clearly, because he’s inside his brain and body. I have to rely on the crude exterior signs I get from paying close attention. The decision involves both of us, but our perspectives are very different and our conclusions don’t always match. 


If we’re wrong, the consequences are huge: he could suffer brain damage, or die.

The decision for today: he’s still on the okay side of that fine (invisible, really) line.

Tomorrow isn’t here yet. It’s a whole new day, and a whole new set of observations and choices. A whole new segment of this sometimes lonely, sometimes dark journey.

Having you walking it with us via this blog gives us company and a much-needed ray of light.

Thank you.


*F/friends: “Friends” since they’re fellow Quakers, and “friends” as well