Brain Cancer: A silver lining

Richard on a "walk" to the river, with Molly, my dad, my brother Bill, and my sister-in-law Lucy

Late last September, when it was clear that Richard’s brain tumor was getting the best of him, Molly asked if she could come stay with us “for the duration” to help with his hospice care.

“Of course,” I said. “We’d love to have you.”

It took her a couple of weeks to arrange for leave from her job as an analyst for a big ad firm in San Francisco. By the time she arrived, her daddy was already having a hard time walking, but when he spotted her getting off the bus from Denver, I swear his smile was big enough to light half the county.

She settled into our guest cottage, and began quietly figuring out ways to help out, from sitting with her dad in the afternoon so I could get out for a walk, to getting him to talk about his art and his life.

A few days after Molly arrived, the hospice harpist came for her regular once-a-week “concert.” She set her harp up in the bedroom and played for 45 minutes while Richard rested.

After the harpist left, Molly said, “I could do that.”

“What?” I asked, one ear cocked for her daddy stirring in the next room.

“Play for Dad.”

I looked at her, astonished. This is the “kid” (she’s 33 years old now) who has Richard’s music genes in spades. She was such a talented flutist in her school years that she won a four-year, full-ride scholarship to the local university–when she was in 8th grade. Somewhere between high school and college though, things went wrong, and she quit playing. She hasn’t picked her flute up since.

Molly's inner flutist emerges…

Her daddy and I had never quit believing that making music would always be part of who Molly is. Someday, we hoped, she would take it up again.

I swallowed, keeping my voice light.

“Yes, you could,” I said. And left it at that.

Two weeks later, when her boyfriend came to join her, he brought her flute, having unearthed it from heaven-knows-where in their San Francisco apartment. (I didn’t know she still had it.)

The next afternoon during her daddy’s rest time, she took it out, put it together, and searched for flute music on the internet. She propped her iPad up on the shelves in the kitchen, cleared her throat, put her lips to the instrument, and began to play.

iPad as score, cabinets as music stand!

I woke Richard. “Listen,” I whispered. “That’s Molly, playing for you.”

Did I say his smile could probably light half the county? When he heard the notes of her flute, the smile-glow was likely visible 100 miles away. He reached for my hand.

“Thank you,” he said.

“Don’t thank me,” I said, tears running down my face. “Thank Molly.”

“You taught her about love,” he said, “and generosity.”

We held hands, listening as the gift of Molly’s music graced the house.

Molly played for her daddy almost every afternoon, her technique growing stronger and more sure with practice. She and the hospice harpist played two duets, laughing their way through.

After Richard died, Molly said that the harpist her offered to play at the celebration of his life. I held my breath, not wanting to press.

“I think I will too,” she said after a moment. I hugged her.

And she did. The crowd of several hundred people hushed as she picked up her flute and the lush notes twined with the plucking of the harp strings. I felt her daddy’s smile, and had to wipe away tears.

Molly’s still playing, and I see that as a silver lining on the very dark cloud of her daddy’s death. The love of my life is gone, but his joy in making music lives on. Witness the video below from last month, where Molly plays a duet with my sister-in-law, Lucy, a cellist.

Thank you, Sweetie, for that gift!

Brain cancer: It doesn’t get easier

I left the Surgical Intensive Care Unit at the VA Hospital tonight as twilight was fading. By the time I got “home” to the motel where I am staying (one that has become all-to familiar during this grueling journey with Richard’s brain cancer), the stars were beginning to appear over the city. I looked overhead and saw Orion striding across the southwestern sky. I stood still for a moment in the parking lot, looking up at the outline of the constellation’s tall form.


(Illustration of the constellation Orion by Sherrie York, from my book Walking Nature Home)

As I did, these lines from “Change,” a song by Tracy Chapman, came into my head:

“If you knew that you would die today
If you saw the face of God and love
Would you change?
Would you change?”

This morning at six-fifteen, just before Richard was wheeled off to be prepped for brain surgery, Jack, his night nurse, was kind enough to call me and then to hand the phone to Richard so we could talk for a few minutes. That moment when we reminded each other of our love is what came back to me in the parking lot tonight.

“If you knew that you would die today…”

Every time Richard goes in for brain surgery, he could die. This is time four, and let me tell you, it doesn’t get any easier with practice.

The hope with today’s procedure was to install a shunt that would drain excess fluid from the right side of Richard’s brain, allowing it to decompress and function normally again. But when Dr. Brega and her team opened a small hole in his skull and inserted the shunt, “only a dribble of fluid came out.” So they drilled more holes in the shunt tube, and inserted it farther into his right brain. Still almost nothing.

On to Plan B. They removed a larger piece of his skull and peered inside. They found “pockets of fluid” here and there, but nothing obvious explaining the pressure squeezing his right brain so it deforms his midline. Except that the membrane* protecting it had hardened and thickened, like a casing of scar tissue. They thinned and/or removed areas of the membrane in the hope that would allow his right brain room to expand outward.

The good news is that side of his brain is no longer compressed vertically: in the month since the previous surgery, it has moved back up to where it belongs. (It had been pressing on the floor of his skull and thus the brain stem, which controls essential automatic functions, like… breathing.)

Despite the anesthesia and painkillers, and the trauma of having his skull opened again, Richard seems more like himself than he has in a while. But it hurts my heart to see him disoriented and in so much pain when he comes out of surgery that he’s almost frantic. It is difficult to leave him in his bed in the ICU with his head wrapped in gauze, the two temporary tubes draining the right side of his skull, and his voice hoarse and exhausted.


(Richard moving a ton of granite boulder that will become a sculptural firepit, using the one-person crane he designed and built for his work.)

“If you knew that you would die today/If you saw the face of God and love… Would you change?”

I saw the face of love this afternoon when I walked into the ICU after Richard’s surgery and he smiled. That’s miracle enough for me.


*Here’s cranial-sacral therapist Nicky Leach’s explanation of the three layers that make up the meninges, the membrane that protects your brain: “Your post is reminding me of the beautiful meninges that make up the layer protecting the brain and how evocative their names are: the pia mater, the membrane around the brain means ‘tender mother’; the arachnoid layer, where the csf flows, is so named because of its spidery avenues; and the dura mater, the tough keratinous layer that is contiguous with the inside of your skull means ‘hard mother.'”