Festival of the Senses

It’s early, and the neighborhood is not yet awake. I sit in my backyard and let the dawn wash over me, a sweet assault on the senses. Citrus blossoms, jasmine, lavender, and rose geraniums perfume the air. A million birds tune up for a symphony in the rising light---the songbirds are the strings; the mourning doves the wind instruments; the woodpeckers the percussion. The sun of a new day streams onto the oaks and redwoods in ever changing patterns. The chill of cool air on my skin is cut by a thick, snuggly blanket, and by the warm weight of a springer spaniel on my lap.

I am very attuned to my senses at this time of year, and especially, my sense of smell. It culminates on April 9, when I observe my Festival of the Senses. And it’s all because of something that happened 16 years ago.

In April of 2007, after a year of weird and worsening neurological symptoms, I figured it was time to cave to doctor’s advice and get cranial MRIs. I had resisted this step.

“Are the scans going to show something actionable?” I asked.

“I don’t think so,” he said. “I think you have hormonally triggered migraines. Women your age get them.”

“OK. So for now, is using the migraine medicine a reasonable choice?” I was thinking about how piggy Americans seem with unnecessary medical procedures. Which you can bet are part of our upwardly spiraling health care costs.

“Absolutely reasonable,” he said. But the symptoms intensified. In addition to the monster headaches, I started losing words—awkward for a writer. Pretty soon, I couldn’t get out of a car without staggering, the gyroscope in my head unable to adjust to the sudden stoppage of motion. Time for the scans.

MRIs are a medical miracle. I’ve had more than 20 on my brain now, and I can just about fall asleep in the tube at this point. But as anyone who has ever had a cranial MRI will tell you, the first time is decidedly strange. Late on a Friday afternoon, a tech at Redwood City Imaging immobilized my head, rolled me into a claustrophobic chamber, and commenced 90 minutes of hellaciously loud banging, buzzing and pounding.

An hour and a half later, they rolled me out. I got dressed and ready to leave, and we reconfirmed the plan. My neurologist would call me next week, almost certainly with the news the MRIs were negative.

Except that’s not what happened. That evening, I got a call from a radiologist who had read my scans. Wait, I remember thinking. The radiologist is working on a Friday night?

“When are you scheduled to see your neurologist?” he asked.

“I don’t know. He was going to call,” I replied.

“Well, I just talked to him.” Wait. The radiologist and neurologist have already talked? On a Friday night?

“You should come in first thing Monday,” continued this hardworking radiologist. “And bring your husband.”

Hmmmmmmmn. I write about medicine, and neuroscience. This was not normal.

“What do you see?” I asked.

Radiologists are often not frontliners. They often spend more time looking at films than meeting with people. This one himmed and hawed, mumbling about “anomalies,” “structures” and “cysts.”

“You sound like you are trying hard not to say ‘tumor’,” I said.

“You should really discuss this with your neurologist,” he began.

“Look,” I said. “I know you are not supposed to deliver news like this over the phone. And I am not going to hold you to anything. But I am a medical writer, and as soon as we hang up, I am going to be on the Internet, trying to figure out what might possibly be going on. Can you just give me a sense of where in the brain this is?” If it were the glial cells, I knew—a glioblastoma or glioma—I was in big trouble.

Long pause. “I think it might be on the meninges,” he finally said.

It took me about an hour of research to discover that this was very good news. Meningiomas are seldom malignant. They present risks—as mine did—because of brain swelling and the dangers of the surgery itself. But I wasn’t looking at cancer, with an average survival rate of 15 months. Armed with this good news, inside pretty big news, I called Cal.

What transpired after that was a very difficult, very scary interlude. Brain surgery is hard. Mine, performed on April 9, was made harder by the fact that I had multiple tumors, and extreme swelling in my brain. The scans Cal and I viewed that Monday morning looked more like a hurricane than anything else. The swelling was likely going to leave behind damage. How much, how long, and how debilitating was anybody’s guess.

But I had some amazing advantages. My posse of family and friends descended on us with a mountain of food and love. My amazing friend Deedee offered to be my food coordinator. I didn’t know what this was, but came to understand that without one, eventually, what you want more than food is somebody to come clean out your refrigerator. “Somebody did it for me,” she said. “Believe me, you are going to need this.” I did.

Another advantage was my neurosurgeon at UCSF --- one of the best in the world at this procedure. He pioneered a brain mapping technique that gave me my best shot of getting in and out of that surgery without brain damage. He also reminded me of that old joke: What’s the difference between a brain surgeon and God? A: God doesn’t think he’s a brain surgeon.

The biggest tumor was sitting on something called an olfactory groove. If this structure wasn’t destroyed already, it likely would be by the surgery. The medical team told me to be ready to lose my sense of smell, permanently. Reverend Julia was particularly troubled by this. Julia is a sensory aesthete; she revels in her five senses. She

hated the thought of me living out my days without smelling, or tasting, anything. Because if you lose your sense of smell, you lose your sense of taste.

Oh well, I thought. Not as bad as losing other things. Like your life.

Five days after surgery, Cal drove me home from the hospital. My head was shaved, my eyes were black, my face was swollen and discolored. I had a Frankenstein-style zipper in my skull. I sailed through a murky, opioid-induced haze for what seemed like a long time. And then, one morning, it was time to try a walk outside. Cal helped me out the backdoor and down the few steps to our backyard.

And Oh WOW.

Citrus, jasmine, and lavender rolled over me like a wave, carried on the warmth of the April sun. The indescribably sweet perfume hit me like a wall. I could smell! In that moment, it was everything.

This year, my festival of the senses fell on Easter. I didn’t do much to note the religious holiday. But I did celebrate my senses. I gorged myself on the fragrant flowers of my back yard. On the lemon cake I baked. On the tangy marsh air of Steinberger Slough, where I walked in the afternoon. At one point during my walk, hearing and sight joined the party. A murmuration of plovers (don’t you love that word for a group of birds—a murmuration?) streamed past and through me---at unbelievable sound and velocity. Three times they thrummed past—whooosh, whooosh, whooosh!

I watched them streak out over the water, where they disappeared as fast as they came. I can hear, I thought. I can see. I can smell. And I am alive.