I received a call from Dr. Shilpa Shah on my first day back to work. Oh no, I thought. It was Monday and I had gotten a CT- scan on the Friday before. I didn’t expect a call so quickly. She never called me.
“You have some activity in your brain.”
There’s a disconnect between her velvety voice and the information delivered. I hang up the phone. Numb. Why am I at work? What’s wrong with me? Have I not learned that the days of slumber are over, the illusion of boundless time, the sleep walking from event to event?
Dr. Shah arranged more scans. I had a brain MRI set up for the following Friday . I arrived and the technician placed me in a long cylinder.
He inserted foam into my ears. He shot contrast into my veins. Soon, I was meditating to the magnetic beat, visualizing myself bathed in green (the color of healing) and picturing how Philip Glass might incorporate the rhythms of the MRI into one of his pieces. I pulsated on the table for an hour. I then raced the disks over to my radiation oncologist. Dee was visiting her new born nephew in Ireland, so I asked a friend to accompany me. We both sat quietly in his office until he arrived.
The doctor entered. We exchanged pleasantries. Why do I always feel the need to put doctors at ease? He pulled up images of my brain on a big screen, mulling over them, scratching his chin. He used terms such as, “I think,” but “I can’t be sure.” I focused on the imperfections in my brain, white circles that shouldn’t be there. It looked as if a dandelion had been blown into my frontal lobe. The doctor sat on a chair with wheels so he could look me in the eye. Then look away.
“They’re brain mets, right?” I said.
He mused,“ it could be an infection, or a fungus, or Valley Fever.”
Wouldn’t that be nice, I thought!
He wouldn’t commit to anything.
“You’re asymptomatic which is good, but its confusing.”
I welcomed his confusion.
Together, we shared a nervous smile.
“Let’s do a scan in a couple of months,” he said.
It sounded like he was punting the ball, but I agreed.
I was a bloodless ghost. I couldn’t feel my skin, but my muscles were working and I walked out of the office. Everything had slowed down. One of the office staff shared a plate of cookies with her coworkers, another laughed for unknown reasons. The most incidental activity, which was everywhere, made me want to scream. I felt as if I arrived from solitary confinement. Laughing or smiling felt like a dagger. I was full of envy and rage, but in a nonsensical way, it was a calm rage.
“What did you think?” I asked my friend while getting into the car.
“I wasn’t impressed by his shoes,” he said, “shoes say a lot about the man.”
“They were new and shiny … probably from Ross,” I said.
“They weren’t Brooks Brothers, that’s for sure.”
I drove home with the images of his black shoes on my mind. He’s on top of the food chain as far as oncology is concerned. Why Ross?
I didn’t want to tell anyone. I didn’t want to let anyone down. Does this happen to everyone? Probably not, but it’s what I felt. The idea that I caused this somehow is like a mist that won’t lift. Over the next couple of days I cried, mostly in the shower, the falling water elicits a torrent of feelings, I guess, followed by an unexplainable relief (that’s quite nice.)
Then I got bored.
I hated the feeling of hopelessness. So, I reached out to others who could help. I wanted direction. I thirsted for it. The people that run Ojai Cares are virtuosos in the category of help. I found out about The Pine Street Clinic in San Francisco. I was advised on a host of things.
I now follow the ketogenic diet; I take supplements and medical cannabis. I’m a practitioner of Tai Chi and other forms of meditation. I still walk in the chaparral and surf as much as possible, but exercise ignites a pain in my hip from tumor scars, or lesions, that slows me down. People have survived and thrived with brain mets for many years. I plan on being one of them (even if it’s unconfirmed.)
Most days I feel inspired and charged with life. I read in one of my cancer books that’s there’s a difference between, “not wanting to die,” and “wanting to live.” I get that and want the latter.
I’m so grateful for my consciousness, and this opportunity to work on myself. It’s like the first time being on a big diving board as a kid. There’s a long line in front of you and one behind as well. No time to chicken out and turn around. I find myself afraid to jump off but once I do it’s not bad, in fact, it’s fun. I get the opportunity to let go, to let go of my hostages, people and institutions that I have expectations of, I get to let go of old ideas I’ve dragged around, ways of being that no longer work or serve me in any way. Do I do these things because I’m an enlightened person? No. I do it because there’s a long line behind me and they’re growing impatient.
“Jump already, would ya’?”
Here I go.