The hardest question

11. May 2012 · 24 comments · Categories: Brain cancer, Death, Living alone, memoir, Travel

Self-portrait, Hotel Serrano, San Francisco

Wednesday morning I parked at the VA Hospital in Denver, and made my way inside carrying a cardboard box holding two tall and healthy tomato plants, the last of my indoor “farm.” Those plants elicited smiles as I wended my way through the crowded corridors.

I carried the tomato plants down a back hallway to an oncology consult room labeled “Dr. Catherine Klein,” set the plants down, pulled out my iPad and opened a book.

A few minutes later, I heard Dr. Klein’s delighted voice.

“Look who’s here!”

She gave me a hug and ushered me into her consult room. I gave her the box with tomato plants and she exclaimed at how beautiful they were. We oohed and aahed over them like new babies for a bit, and then she asked,

“How are you?”

I hate that question. I know people ask it out of concern and a genuine desire to know. But I never know how to answer it. It’s not simple, and I don’t want to give a whole dissertation on the subject.

“I’m good,” I said.

“You look great,” she responded. “How are you?”

I sighed, and my eyes filled; I blinked away the tears. “I am good. Not every moment. I have good days and not-so-good ones. By and large though, I’m happy.”

We talked a bit more, and then parted.

Molly at my hotel

I thought about Dr. Klein’s question on and off for the rest of that day, and again yesterday as I flew to San Francisco to  spend Mother’s Day weekend with Molly and her sweetie, Mark. I felt guilty about not giving a more thoughtful and complete answer.

How am I?

I am happy a lot of the time. Yesterday I had a wonderful afternoon walking San Francisco with Molly. She gave me a tour of her office and the little park nearby where she takes Diesel, her sweet part-Lab, on work-breaks.

We walked the route she takes through Chinatown, North Beach, and then up the steep slopes of Telegraph Hill on her way to and from work. It was a gorgeous day; San Francisco is perhaps my favorite city in the world; the view from their apartment is breathtaking; the Anna’s hummgbirds zipped around us on the deck, and the resident flock of parrots screamed into a nearby tree. I was happy.

The house where my great-grandparents, William Austin Cannon and Jennie Vennerstrom Cannon lived for a time in the Berkeley hills.

And today, another beautiful day, Molly and Mark drove me across the Bay Bridge to Berkeley to explore the town where my mom grew up. We headed through the UC-Berkeley campus, past the Football Stadium where my parents went on dates, and up into the neighborhood in the hills where my great-grandparents, William Austin Cannon and Jennie Vennerstrom Cannon lived. We found their house, a pre-1906 earthquake wood-frame Victorian. (It’s embiggened now, but still familiar.)

We wandered the narrow and winding streets downhill; we walked by the Oxford Street house where my mother grew up, a Mission-style bungalow (now, of course, much enlarged) that was a magic place to me growing up. We decided on the spur of the moment to see if we could get a table for lunch at Chez Panisse, Alice Walker’s restaurant, the birthplace for today’s locavore food movement.

Field greens salad with sauteed goat cheese and herbs at Chez Panisse

We ate a fabulous lunch of fresh, local food presented in beautiful and delicious ways by an attentive staff. The setting–an early 20th century Craftsman house expanded in lovely ways–was warm and inviting. (Still, I hope I won’t be offending the culinary gods when I confess I had no idea you could spend that much on lunch for three….)

In between those two happy days, I cried myself to sleep last night.

Because last September I was in San Francisco–with Richard. We walked all the way from the Marina District where our motel was to Molly and Mark’s place on Telegraph Hill. We held hands and laughed and hung out Caffe Roma in North Beach, our favorite coffee place.

This one's for you, Richard Cabe: Iris blooming in the garden below my mother's childhood home, Berkeley

We knew it was his last big trip; we knew he had terminal brain cancer. We knew the moments were precious and we enjoyed them thoroughly; we didn’t know he’d be dead less than two months later.

How am I?

Mostly I’m happy. But sometimes I feel like I’ve survived a hurricane of horrendous force, and I’m still picking up the pieces of me and my life.

That’s grief. It’ll be part of my life for a good long while, I expect. Because it’s an integral part of the process, just the way death is an integral part of life.

That word “disability” again

06. May 2012 · 33 comments · Categories: Brain cancer, Health, Living alone, Wellness

Richard after the brain-drain procedure, February 2011

A little over a year ago, Richard and I were discussing disability, specifically, whether we should file for Social Security Disability Insurance on his behalf.

He had by then weathered two brain surgeries, plus one procedure to drain a near-fatal accumulation of brain fluid. His recovery each time astonished his docs; his brightness—both in mind and spirit—seemed barely diminished.

So when his oncologist suggested applying for the disability pension, Richard said essentially, “No thanks.”

She looked directly at me and said, “Think about it. It could give you some breathing room and help you manage more easily.”

I didn’t like even hearing the word in the context of Richard. I looked up the definition:

Disability. n. A physical or mental condition that limits a person’s movements, senses, or activities.

It was hard to imagine my love as “disabled” when he sketched out an idea for a new sculpture, or commented incisively on a piece of my writing. But I had to admit that his ability to accomplish the more practical aspects of life was… impaired. Things once simple took him a long time; he was easily distracted.

In the end, after talking about the labels, he decided it wouldn’t hurt his sense of self. We applied for the pension, and his doc was right: that small monthly check freed me to do a better job of helping him live well with brain cancer, and die well too, when it came to that.

A silly moment, April 2011

I’ve had those discussions in my mind recently because living without him has forced me up against something I have successfully avoided until now: I’m disabled too.

Not in any way that might be obvious to others. But it’s become painfully clear to me now that I don’t have Richard to help out.

The most obvious symptom: my energy runs out long before the end of the day, and if I push myself, I pay with fevers, joints that feel like they’ve been pounded with a ball-peen hammer, balance wobbly enough that I need a cane, and brain fogs so intense that words become strangers and I cannot think my way out of a paper bag, much less a crisis.

I’ve been accommodating my own particular… disabilities for so long that they’re normal to me. It’s habit, for instance, to save energy: I sit down instead of stand when I can do it without drawing attention to myself; write from bed at first and then move to the couch, where I can sit sideways with my feet up; take baths rather than showers (it’s that horizontal versus vertical thing again, a crucial difference for my daily energy budget); I carefully schedule my outings and public appearances at the times when my energy is at its best, and as a result, so am I….

My limits come from having either Mixed Connective Tissue Disease or Lupus, depending on how the tests are interpreted. The label doesn’t matter to me—neither is understood well enough to know what causes it or might cure it.

The sunset from my couch...

I have managed quite well by adjusting my life to accommodate the symptoms, which means being very careful to live within the limits of my energy—once I overtax myself, my body’s systems go haywire and I am sick and miserable, wobbly and unable to think straight until I have time to recover.

I’d been considering my limits when a very knowledgeable and helpful representative of the Social Security Administration asked me point-blank if I was disabled, and then quickly said, “Let me explain why I’m asking.”

If I fit their definition, I am eligible for a monthly disability insurance payment (smaller than Richard’s because I’ve earned less) and, two years after qualifying, I’d also qualify for Medicare, compelling in itself, as anyone who is trying to afford health insurance will understand.

Both mixed connective tissue disease and Lupus are listed on the Social Security Administration’s list of qualifying conditions. My family doc is willing to write a letter in support of my application.

Pallid evening primroses out the bedroom door at dawn

Still, I haven’t decided to apply. Like Richard, I’m proud and I imagine myself self-sufficient. (None of us really are, but it’s a seductive fiction, especially for we westerners.)

Applying requires a huge investment of time and energy, and I have more than enough to handle right now. So much more than enough that I wake exhausted, having spent the night trying to figure out how I’ll keep all of those balls in the air. (I’m no juggler—that was Richard’s talent.)

Fortunately, it’s not a decision I have to make immediately, as his palliative care psychologist pointed out when I talked with her about it. I’ve got two years from the date of his death to apply, and in that time I can gather the information as I have energy, a bit here and a bit there.

First I have to decide if I can live with the label. Richard didn’t let it define him, and that gives me courage. I’ll give it time and see how I feel.

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