Feeling Lucky

“You’re so lucky!” commented a reader in response to “Falling In Love Again,” my blog post about my week teaching a creative writing workshop on Isla Espiritu Santo off Baja California, and my return to Richard and Molly here in Colorado.

Rockwater
Lucky isn’t exactly the word I would have chosen to describe my life over the past four and a half months. I can’t say that I feel lucky to have ended up in Denver with Richard in the hospital with severe  brain swelling last September instead of at the remote cabin in the San Juan Mountains on the joint artist-writer residency we had anticipated for months. I don’t feel lucky to have given our lives over to the weekly trips to the VA Hospital for appointments, tests, another hospitalization, brain surgery, and then a cancer diagnosis that meant we had to move to Denver for Richard’s radiation and chemotherapy treatments. Looking at the question mark-shaped scar that now scribes across the right side of Richard’s head and his radiation-reddened scalp and blistered right ear, I can’t say I feel lucky. At the moment my flight to Mexico took off from Denver the day after Christmas, leaving Richard behind as I headed to Isla Espirtu Santo for the trip we’d dreamed of for so long, I certainly didn’t feel lucky. Nor does it seem like luck to have been without income since September, or away from the home and community we love for the last a month and a half. 

Rands

 On reflection though, I realize I am lucky, in the sense of the word that means fortunate. Of course, I’m not fortunate to have the one I love end up with brain cancer, and I’m not fortunate to be living in a strange place for the duration of his treatment; nor are we fortunate to be drawing down our savings. But things could be much worse. I’m not channeling Pollyanna here. They really could. 

Luck, as I see it, is in large part how you deal with what life brings. In that respect especially, I am very fortunate. Both Richard and I have been able to approach this serious health crisis, this strange turn of our life path, with a great deal of equanimity. Early on, back when he was visited by bird hallucinations, we determined to take what came with grace. We’ve stuck to that resolve by and large, and it’s helped. In fact, I’d go so far as to say that our intention of walking this path together with awareness and open hearts is part of why the path hasn’t been any worse.

Ourbay
Here’s what makes me feel lucky, in no particular order:

  • The guy in the self-portrait above, and the love we share (including the fact that he’s goofy enough to tolerate me shooting photos of us in the bathroom mirror of the place where we’re living while he’s being treated for brain cancer–and then to laugh about it)
  • Our families: Molly, my folks, my brother and sister-in-law, their girls and grandkids, and Richard’s mom, siblings, and their families–we’re so fortunate to have y’all in our lives!
  • You: My friends, readers, colleagues–this rich and far-flung community, you who have been so generous with your comments, sympathy, support, your light and love
  • The doctors, nurses, technicians, and aides who have cared for Richard over these months, all of whom seem to actually care, and are working at giving him the best chance possible to live many more healthy years
  • This planet: Earth, the only home our species has ever known, the extraordinary community of lives that animates its landscapes and seascapes, a community that nurtures and nourishes we humans as well
  • Writing and the opportunities I have found to speak the words in my head and heart, to drop those metaphorical pebbles in the pond of life that their ripples may spread outwards. For me, writing is love made evident, and I do love this life and this world!
  • These days with Richard, the time on Espiritu Santo, every dawn, every sunset, and all the hours between–the nights too, and the moon and stars sailing across the dark heavens.

So yes, I am lucky. Luck’s three parts hard work though. It’s what you make of what life gives you, and that means more than just showing up and expecting things to come to you. It means the attitude you bring to life, the spirit you cultivate, the way you are in every single moment of every day. I intend to honor what I have, and live these days mindfully, generously, with my heart outstretched as if it were my hand.

Amaryllis
One more thing: It’s January, and that means garden and seed catalogs are on the way. I can’t wait to get home and begin preparing my kitchen garden for spring. It’s a new year, and I’m more than ready to help new life come into being.

Those of you who grow your own food might want to think about sharing your bounty this year by donating seedlings to a community or school garden, giving some of your harvest to a local food bank, or volunteering to help others discover the joy and great flavors in growing their own food. I am particularly inspired by Renee’s Garden Seeds seed donation program, and the Garden Writers Asssociation’s Plant a Row for the Hungry project.

Join me in making 2010 a year of generosity and growth, a year where we all can remember what it is to feel lucky.

Falling in Love Again

I’m “home” in Aurora, Colorado, tonight, in my favorite place to write in this room I share with Richard at Fisher House: sitting upright in bed, with my back resting against a pile of pillows and my legs stretched out in front of me, and Richard snoozing at my side.

Bougie
Yesterday morning I woke in La Paz, in Baja California del Sur, Mexico, where clouds of bougainvillea blossoms hang over courtyard walls, hooded orioles chatter at Anna’s hummingbirds, and the desert air smells of both the tar-and-orange-blossom
fragrance of creosote bush and the salty tang of the turquoise waters
of the Sea of Cortez. 

Ballena
It was the last morning in what was a magical week spent on Isla Espiritu Santo, “Island of the Holy Spirit,” a place that I’ve imagined visiting since I first heard its name more than three decades ago. It is as extraordinary as that name, a stark desert island of tan and red volcanic cliffs dotted with tree-sized cardon cactus and spiny desert shrubs, an island that falls straight into a sea whose waters shade from turquoise near shore to ultramarine in the deepest parts and teem–a word I don’t often have the chance to use–with life from coral-pink colored coral to whale sharks as long as school buses. (That’s Ensenada de Ballena above, a bay named for the whale-shaped rock at its mouth.)

I went to the island with a small group of writers and friends outfitted by Baja Expeditions, one of the pioneers of the practice of ecotourism, conserving nature and culture by teaching tourists and locals alike to love a place without loving it to death. (That’s our camp on the beach below, with the sleeping tents on the left and the dining and cooking tents on the right.)

Camp
It was a week of waking to the sound of waves lapping the shore by our cozy tents and pelicans thwocking the water as they dove for sardines just a few yards away, of kayaking azure swells as loggerhead turtles surfaced nearby, of snorkeling among baby sea lions eager to play, of hiking to shelter caves inhabited by the Pericu people who lived where the desert meets the sea for 12,000 years, until the Spaniards brought their diseases and livestock. (That’s a Pericu pictograph below, a bird-symbol which our guide, Pedro Lopez, a young native of La Paz who is as passionate about his home place as he is knowledgeable about its history and natural history, speculates may represent a turkey vulture drying its wings in the sun.)

Picto
It was a week of being surprised by flying fish bursting out of the water in front of our kayaks like stars falling upwards, of marveling at dolphins arcing next to our panga (a deep-bodied skiff the local fishermen use to handle both the big swells of the open water and the shallow bays), of watching the dappled backs of enormous whale sharks as they fed on microscopic plankton, of listening to canyon wrens’ descending trills from the cliffs above the tents in the morning and great horned owls hooting at night.

Rockiguana
A week of delighting in the clouds of butterflies hovering over a wild garden of pink mallow and purple desert lavender and rock iguanas sunning on warm cliffs, of discovering the damp streak of a dry waterfall that thunders with spray in the annual rainy season, of seeing the crystal-clear sea boil with bubbles as a school of thousands of fish circled, of watching magnificent frigatebirds kiting overhead on pointed black wings as cormorants dove to chase colorful reef fish and brown pelicans rocked on the waves. 

Pelican

We snorkeled, we hiked, we paddled, we fished and dug for clams, we laid around in the sun. 

Chriskayak

We ate three fabulous meals each day featuring fresh seafood and regional cuisine by Tonio, our cook, a fisherman on the island for more than 20 years, helped by his camp crew. (That’s our guide Pedro below, clowning around with a bonito just caught by one of our group. We had bonito tacos with fresh-roasted pasilla chiles that night, after margaritas and baby octopus ceviche for happy hour and before a postre–dessert–of fresh papaya slices and dulce de leche cake. No wonder my jeans are so tight.)

Pedro

Oh, and we wrote. We wrote daily haiku, we wrote field notes, we wrote short essays, we wrote stories and poems and book proposals. We wrote to think, to dream, and to set a course for the New Year. We wrote our way into the practice of writing as a way to understand Life and our place in it. We wrote our way into feeling inspired, empowered, and to knowing our voices.

Keyhole
We left the island gr
ateful for the time where the desert meets the sea, grateful for the warmth of the camp staff and the group of strangers-become-friends, grateful for the wonder of mangroves and seaweed, sailfish and sardines, cactus and wild figs, sea turtles and ospreys soaring overhead.

Datura

I left knowing I had fallen in love with the island named Espiritu Santo, Holy Spirit, an island full of the spirit of life itself in all its glory, from the tiniest wildflower managing to thrive in the harsh volcanic soils that receive just four inches of rain a year, to the immense whale sharks that feed off its shores. I left vowing to return, to share the magic of its meeting of aridity and abundance with those I love.

Sunrise
Yesterday morning in the pastel light before dawn, I flew out of the La Paz Airport, trading tropical breezes, tree-sized cactus and leaping dolphins for snow and city streets. The wonder of my time on that magical island buoyed me through the long lines as gloved security personnel searched every piece of luggage and patted down each passenger, through the hours spent packed in crowded jets, through the demands of U.S. Customs and Immigration. When I finally escaped the secure area of Denver International Airport, I fell in love all over again with the two smiling faces waiting for me at the barrier: Richard and Molly.

RMolly
Today we spent the day hanging out, just the three of us, basking in the joy of being together. Richard was practically giddy–he kept Molly and I laughing. She filled me in on his week: his appetite, his napping, and how pleased his oncologist, Dr. Klein of the VA Hospital, is with the way his blood counts are holding steady. I told them stories of the island, La Paz, the group, the workshops, the sea. “I want to take you there,” I said.

Mollyme 

And if all goes well, I will. But tonight, as Molly flies home to San Francisco and Richard snoozes next to me, I know that whatever comes, I have all I need. I’m lucky to have experienced the magic of Isla Espiritu Santo, and lucky to have come home to the everyday enchantment of my life here. 

Thanks to all who have buoyed me on this journey.

Making Tough Choices

Tomorrow afternoon I’ll be boarding a plane for Mexico, headed for Baja California. By this time on Monday, I’ll be sitting on a beach next to the Sea of Cortez, on Isla Espirtu Santo. The ocean there is turquoise, the cliffs encircling the beach rust-red, dolphins leap out of the water, and the late December sun will be warm.

Dsc01240
It’s a wonderful place, except for one thing: Richard won’t be there with me.

He’ll stay behind in Denver, enduring daily doses of radiation, those lethal gamma rays enhanced by chemotherapy drugs.

Being in Baja when he isn’t may be the hardest thing I’ve ever done in my life.

This was one of our dream trips, something made possible when I created a writing workshop to pay our way. I had signed up a small group, reserved the camp and guides, and had purchased our plane tickets when Richard was diagnosed with brain cancer.

Perhaps naively, we hoped he could take the Baja trip anyway during a break in his treatment. Richard’s radiation oncologist nixed that idea. The radiation, he explained, has to be done in a continuous chunk of time without substantial breaks. Why? Because cancer cells’ resistance to radiation varies just as the mutations in their DNA that make them cancer cells vary. 

The least resistant cells die off first, and as the dose of radiation accumulates, the more resistant cancer cells eventually die too. (So do some of the healthy cells, but not, we hope, too many.) If treatment is interrupted for any reason, the doctor explained, those more resistant cancer cells that have survived keep growing and dividing unchecked. That decreases the chances of successful treatment.

Richard asked the doc if he could wait to start the radiation and chemo until after the Baja trip.

“Maybe,” said his radiation oncologist. But sooner is better: the tumor could regrow during that time.

Fisherhouse

We looked at each other. Our choice was clear: Richard would start his treatment as soon as possible; we’d figure out what to do about the trip later. We left the clinic holding hands and headed his fitting with the radiation techs, talking about what to do. We continued that discussion–and the hand-holding–all the long drive home, across the city, up through the foothills, over Kenosha Pass, across South Park, and down into our own valley.

Finally, we decided: When the time came for the trip, Richard would stay in Denver to continue his radiation, and I would go to Baja.

It’s a tough choice for both of us. I want to be there to coddle him through this grueling treatment; he wants me to nurture myself. Sometimes taking care of each other means our paths diverge for a while.

Us

When we’re apart, we have a ritual that reminds us that we’re still connected: we each look up the sky, search for the moon, and think of the other, seeing the same orb sailing across the heavens. This time, we’ll be watching the moon wax into a particularly special full moon: the last one of the year, on the last day of the year–New Year’s Eve–and, it’s also a Blue Moon, the second full moon of the month. By the time we’re together again, that full moon will be waning, December will have turned to January, and we’ll be several days into the new year of 2010. Over that time though, we’ll have shared the moon, each from our respective places, night after night.

Tonight, wherever you are, look for the moon and send your love out to someone special. Richard and I will be doing that too: one from Denver, one from Baja.

And forgive me if I don’t respond to comments in the next week. I’ll be away from internet access during my time in Baja California and won’t return until January 4th.

May this New Year bring us all new possibilities, much happiness, good health, and many blessings!

On Solstice Night….

Who knew? When I wrote about our winter solstice tradition of lighting luminarias to illuminate the longest night of the year and to carry our hopes into the dawn to come, and when I asked that anyone who was so moved set out a few luminarias for Richard because we can’t be home to hold our annual “Light the Darkness” celebration, I had no idea what the response would be.

FHluminarias
I guess I didn’t have enough faith. My email in-box, cell phone texts, and my Facebook account are filling with messages and  photos of candles, lights, and luminarias, from snowy Washington, DC and Pennsylvania to the Texas Hill Country, from Washington state to California’s Eel River and southern New Mexico, and Treebones Resort in the wilds of the Big Sur coast to central Kansas and across the Atlantic to Sweden and Norway.

A taper on a fireplace mantle, a ring of tealights, electric Christmas tree lights, a special La Milagrosa candle, nine luminarias lining a path whose designer didn’t realize until tonight is itself exactly aligned with the setting sun at solstice, luminarias along sidewalks, atop walls, on porches….

Fisherhouse
Richard and I brought enough sand, candles and paper bags with us to Denver to put six luminarias on the front walk of Fisher House, the VA’s house for out-of-town patients where we’re staying. We went downstairs at dusk and Richard poured sand into our bags, and then I began lighting them. The waxing crescent moon drifted behind a haze of thin clouds as we finished and stood back to look at our little lights. Not many, we said to each other, but we were absurdly pleased to see their lights flicker in the gathering darkness. (That’s our line of luminarias at Fisher House above.)

Then we went inside and came upstairs to our room. I checked my email, and this is what we found:

Layingluminarias
Photographs of our friends at home, lining our sidewalks and porches with luminarias, just as if we were there. Here they are having folded and filled the bags–did I say we have a lot of sidewalk real estate, so we usually put out about 120 luminarias? (Photo by Sherrie York)

Luminariaparty
Now they’ve got them all lit and a hardy few who haven’t frozen yet are enjoying the light. Did I mention that the weather on Winter Solstice night at 7,000 feet elevation in the Rockies is not usually balmy? And that you have to light luminarias the old-fashioned way, candle by candle? (Photo by Elise Backinger)

Bless you all: from Salida to DC, and Big Sur to Washington state, from Texas to the Eel River to Kansas, from Baja California del Sur to Sweden and Norway. Thank you for helping us illuminate this longest night of
the year, the turning point when the sun “stops” in its journey, this time when we
all wait and hope, for the gradual return of light and life. And thank you for illuminating the extraordinary journey Richard and I are taking with brain cancer. You’ve renewed our faith, and our belief in the power of love and light. What a gift it is to have you all lighting our way!

Homeluminarias
And here are those beautiful luminarias, illuminating the darkness of our block in Salida, with the town’s Christmas Mountain lights in the background. (Photo by Sherrie York)

Happy Solstice, and may tonight’s lights bring warmth and hope to us all!

Light in the Cancer Darkness

Yesterday was Richard’s every-two-week check-up with his Oncology doc, Dr. Catherine Klein. Dr. Klein is  Chief of Oncology and Hematology at the VA Medical Center, but you’d never know it by her manner. She comes to the waiting room herself to fetch us. She listens. She’s unpretentious and thoughtful, with a wry sense of humor.

“How are you?” she asked. It wasn’t a pleasantry: she scanned us carefully in turn as we answered.

Richard admitted to increasing fatigue: “I’m napping more and more often.”

She nodded her head. “Fatigue is normal. What we’re doing to your body with the radiation and chemo tires you out. Napping is good.”

Once we were seated, she swiveled to the computer screen to look at his most recent blood test results from after he had completed his first two weeks of treatment. “You’re doing well,” she said, clearly pleased as she explained that his white blood cell and platelet counts are normal.

Richard wanted to know what his most recent MRI looked like, particularly the traumatic swelling in his right temporal lobe that caused him to hallucinate birds at the beginning of this journey with brain cancer.

“The two sides of your brain don’t look the same–the brain surgery changes things there,” she said. But the edema was essentially gone, she added, and there were no signs of new tumor growth.

“You’re looking good,” she said. “Keep that up.”

After the appointment was over, we threaded our way through the crowded lobby of the VA Medical Center hand-in-hand, uplifted by the news. (So uplifted, in fact, that we forgot to go to the pharmacy to pick up the next batch of his chemo drugs and had to come back later. Ah well.)

Molly

We want to thank you all for your support. It helps immeasurably as we struggle to keep up our spirits, keep Richard healthy, and do what we need to do to nurture ourselves through this time in the cancer cloister. (That’s Molly above, sending a message of love from her computer at work–how sweet can you get?) This is not a walk in the park, any way you look at it. But it could be much, much worse, and your expressions of love and support contribute in positive ways.

That’s why I’m going to ask you a special favor: This coming Monday, December 21st, is winter solstice, the shortest day of the year here in the Northern Hemisphere. That day marks not only the return of the sun’s light
and warmth, but also a personal milestone, the halfway point in
Richard’s radiation treatment for brain cancer.

For more than a decade, Richard and I have celebrated the passing of winter’s longest nights and the turning of the Earth toward light and life by lighting the darkness: lining the sidewalks on our block with dozens of luminarias made of paper bags, plus some sand and votive candles.

Luminarias
At dusk on solstice, we invite family and friends to help light the luminarias one by one. The tiny flames in their translucent bags burn through the night, heralding the sun’s return at dawn. It’s a ritual that touches us deeply. As I wrote in my weekly commentary:

Holiday lights are meant to illuminate, a word that means “to light up,” and also “to explain, make clear, elucidate.” Light alleviates spiritual and intellectual darkness, bestowing knowledge and understanding.

As I strike a match to light a wick in the chill of solstice dusk, and place a flaming votive candle on its bed of sand, I think about the lessons luminarias teach. The bags by themselves are flimsy and flammable, the candles too small for robust light, the sand simply grit underfoot.

Yet together, candle, paper bag, and sand combine to illuminate the darkness: each slender wick feeds liquid wax to fuel the flame; the paper walls shelter the flame from wind and snow, and their very flimsiness diffuses light; the sand grounds the bag and prevents the flame from incinerating the paper that protects it.

Inside their flammable shelters the candles burn steadily, hour after hour, through the darkness of a long winter night. When dawn comes, the ethereal lamps are still glowing softly, demonstrating the extraordinary resilience and beauty inherent in the simplest of materials.

Luminarias show us the power of simple gestures. These tiny lights illuminate our metaphorical darkness as well, lighting the way into a new year. Richard and I won’t be able to hold our luminaria celebration this year, because we’re in Denver for Richard’s treatment.

What’s the favor? If you feel so moved, light the darkness wherever you are. All you need are some slightly-larger-than-lunch-bag-size paper bags, clean sand, plus 12-hour votive candles Fold the rims of the bags over once to hold the bag open, and put a shovel-full of sand in each, along with a votive candle. At dusk on Monday, set your luminarias on a non-flammable surface, light them, and think of Richard and me.

Luminariasingle

As those tiny flames flicker and glow in their translucent bags in the darkness of that longest winter night, Richard and I will turn our faces to the star-spangled heavens and send our our wish:

May Richard be whole. May Richard be healthy. May Richard be happy. May all beings be whole, healthy, and happy.

And our spirits will glow, lit by the support of those we love and the commonplace grace of small candles burning in simple paper bags.

Blessings to each of you!

Ten Down, Twenty to Go

Today marks the end of Richard’s second week of radiation treatment, which means he’s a third of the way through this course of radiation combined with chemotherapy. And miracle of miracles, he’s feeling good so far. Some days he naps for a few hours, and some days he has queasiness and headaches that come and go, but overall, he’s in good spirits and tolerating the rigors of cancer treatment very well.

Richard

He looks good, too, which is more important than you might think. Looking good helps him feel healthy, and he’s able to maintain a positive attitude–which also helps him look and feel good. And it affects how other people–especially his health care providers–treat him, which in turn affects his mood and his ability to stay healthy. It’s all self-reinforcing, and sometimes the results are pretty dramatic.

This morning, after Richard’s 7:30 a.m. date with the gamma ray machine, we waited for his weekly consult with his radiation oncology docs. The first time we met with Dr. Chen, the lead doc, we were surprised by his manner. He seemed brusque as he talked about how serious Richard’s brain cancer was and how grim the prognosis could be. This morning Dr. Chen scanned Richard carefully as he quizzed him about how he felt and ran down the list of radiation and chemo symptoms, beginning with exhaustion and vomiting and ending with fevers and dizziness.

Richard said no to all of the symptoms.

“Good,” said Dr. Chen, and he smiled a charming smile. “You are a healthy guy.”

“Except for the small matter of his brain,” I said, unable to contain my sick sense of humor (pun intended).

Dr. Chen surprised me by laughing. Then he said, “Yes, except for that brain tumor. But we’re going to fix you.”

I immediately had a ridiculously silly vision of mechanics with tiny wrenches and screwdrivers working away at Richard’s brain. But my mood lifted. A few minutes later, Richard and I left the cancer center arm in arm, walking briskly in the frosty morning air, anticipating breakfast and smiling at each other.

“I’m a very lucky guy,” said Richard. “Because even though I have people telling me I’m gravely ill, I feel good. I can take joy from being here with you.”

Quote
Dr. Chen’s words reminded me of this quote which adorns the portico of the old Army Hospital on the Fitzsimmons Campus where we are staying. We walked over to visit the building, an Art Deco classic opened in 1918, one snowy day last week, and I was struck by the words. Afflictions, no matter how evil in themselves, Tillotson says, are good for us, because “they discover to us our disease and tend to our care.”

In other words, the birds that Richard hallucinated back in late August were good for him, because they pointed the way to the traumatic swelling in the right temporal lobe of his brain and thus, eventually to the brain cancer. And Richard’s remarkable ability to keep a good attitude through the scary rigors of radiation and chemotherapy is helping us all “tend to his care.”

Southpark
Tonight we’re home for a few days, probably our only visit until Richard has made it all the way through this course of radiation. We had initially thought we might come home must weekends, but winter has come to our the mountains with all the snow and wind and slithery roads that go with the season. Also, we’ve realized how much effort it takes to wrench ourselves from the quiet cloister where we focus on cancer treatment to return to our ordinary busy lives at home.

But today was a beautiful day, and buoyed by Dr. Chen’s pronouncement that they’re going to “fix” Richard, we packed up after breakfast and headed west after a stop to visit my parents. It was an exceptionally lovely drive, with snow laying crisp on the foothills and peaks, and bright sunshine throwing dazzling light around and drying the highway pavement.

Along the way we saw the usual gorgeous scenery blanketed in crisp whiteness (that’s the Michigan Creek drainage in South Park above) and we also completed the wild ungulate trifecta. Our challenge to ourselves on the drive between home and Denver is to see as many species of wildlife as possible. One permutation is counting native wild ungulates (hoofed mammals). Sometimes we see all four species–elk, bighorn sheep, mule deer, and pronghorn–which makes a quadrifecta, but three is quite respectable.

Bighorn
Today’s trifecta began with the nine mule deer–six does and three spikes–bedded down in the earth mounds of the construction site next to where we’re staying, and continued through the forty or so bighorn sheep we saw hanging out on a mountainside above the tiny town of Grant, just before the highway climbs up and over 10,000-plus foot elevation Kenosha Pass. 

That’s one of the rams in the group above, shot through the car window after Richard obligingly turned around in a snowy pullout and slowed down in a gap in the traffic on the two-lane so I could indulge in my habit of documenting our travels. If I was a real photographer, I would roll down the window, or even–heavens!–stop and get out of the car. But I enjoy the challenge of shooting as we go. After the bighorns, we spotted a herd of 50 or so elk off at a distance in the snowy grasslands of South Park. But no pronghorns this time. I think they’re found a spot with less snow.

Home

So think of us tucked into our bed, at home in the quiet valley in the photo above, the place where we’re looking forward to spending many more winters once we’ve completed this unplanned residency in the cancer cloister.

Life in the Cancer Treatment Cloister

A friend who has been through cancer surgery and the grueling cure wrote to say it was as isolating as entering a black hole: “Although people were wonderful and helpful, it’s hard to communicate into a black hole.” I know exactly what he means. No matter how much everyone wants to help, no matter how much support and love and good wishes come our way–all of which we very much appreciate–we’re the ones going through the experience. We’re in the metaphorical black hole of cancer treatment. Our lives are totally focused on managing the chemo medication and its side effects, and the radiation blasts to his brain and their side effects. Our sole job right now is to keep Richard healthy so that this treatment can go on and work its magic. Outside, the world goes on without us. It’s odd, and our friend was right about how isolating it is.

Viewfromwindow

It’s also oddly restful, as if we’re living in a cloister. Only this cloister is organized around brain cancer treatment, not any religious group. Over this first full week of Richard’s treatment, we’ve settled into a quiet routine. Richard wakes at about five a.m. to take his six capsules of temozolomide, the chemotherapy medicine, with 8 ounces of water to wash them down. Then he comes back to bed and we snuggle and snooze or talk quietly until about six-thirty, when we get up and begain our morning routine: yoga, breakfast, read the newspaper, and check email.

His radiation treatment is scheduled for the same time every day. It has been at one-fifteen, so our routine is been to walk to a cafe in a nearby research building at the medical center campus where we’re staying in the house for out-of-town patients. Richard gets coffee and a sticky bun, I get cocoa and sometimes a scone. I pull out my laptop and start my writing day; he usually reads an art history book. After an hour or so, we walk back to Fisher House, and I go to work on whatever writing is uppermost on my internal priority list. (Last week that was an article on home photovoltaic systems for Audubon Magazine.) Richard meditates (in the closet!), writes in his journal, and reads. 

After lunch, we walk over to the cancer center for Richard’s blast of radiation. When they call his name, he disappears through the double doors to his date with the radiation techs, the mask that holds his head immobile on the table, and the big machine. He returns looking a bit dazed, with the net-pattern of the mask still pressed into the bare skin of his head and face, giving him the look of some mahogany-skinned lizard.

We walk “home” to Fisher House, and then settle into a quiet afternoon of work, reading, and occasionally an outing to the world beyond the medical center campus. (The photo below is of an exceptionally artful pattern in the foam of my cocoa poured by the barrista at a local coffeehouse from this afternoon’s excursion.) Dinner is early, and we’re in bed by nine-thirty so we can get in a solid night’s sleep before it’s time for Richard to take his chemo drugs on an ultra-empty stomach.

Cocoa
It’s a quiet routine. And it seems to be working. After five days of radiation (25 more to go) and five days of chemo drugs (months of those to go), Richard’s feeling pretty good. He gets tired (that’s the radiation), he has some queasiness (that’s the chemo), and some days he struggles with his mood (most likely the chemo too, which includes mental confusion, anxiety, and depression among its side effects). But otherwise, he’s doing really well. And we’re both determined to keep him that way. 

The cloistered feeling is very interesting. It may come in part from the house where we’re staying, a lovely quiet place full of other cancer patients and their spouses/significant others, as well as families of out-of-town patients in the VA Hospital. We’re all here because of some health trauma, and we’re all focused on treatment. It may come from knowing the prognosis for Richard’s sort of tumor, which I’m not going to invoke here because he and I are determined that with his general good health, his strong spiritual practice, and the great care he’s getting he’ll beat the odds. That keen awareness of our mortality though certainly contributes to the feeling of being apart from the rest of the world. It may also come from the season. The nights are still growing longer and solstice is approaching, the time the sun “stands still” as if hesitating about whether to turn back toward the half of the year blessed by longer days, warmth, and abundant light. 

Mirror

Whatever the cause, Richard and I are doing our best to take advantage of this cloistered time. We’re deepening our spiritual practices and giving careful thought to where we’re each going with our work. That examination resulted in a proposal for our first-ever collaborative project in response to an invitation for submissions for a show at Denver International Airport next year organized by Colorado Art Ranch. And yes, we’re even having fun, as in the photo above, which I snapped in the foyer of The Collection, a design showcase that carries Richard’s work, on a visit there this afternoon. 

“Smile,” I said, “Look like you’re having fun!” He does, doesn’t he?

From the brain cancer cloister, our thanks and blessings. We so appreciate your support. 

Finding a Sustainable Pace

It’s Sunday night of Thanksgiving weekend, and I’m in my cozy spot, sitting on the couch sideways, with my feet up and my back leaning against the arm nearest to Richard, who is comfortable in the teak easy chair next to me. This is our last night at home for a while, and I should be staring at the piles of work in my office and thinking about what I need to take with me for our Denver “residency.” Instead, I’m getting in my couch time while I still can.

Stove
Ten months ago, I sat here and wrote a blog post about finding sustainability in my work life. What I meant by sustainable work was measured, I said,

“…in terms of my personal energy budget. (In terms of its impact on the planet, my work is pretty green: I work at home in a house heated by the sun and soon to be powered by solar electricity [more on our coming photovoltaic system in a future post], I do most of my errands on foot, recycle almost all of my “trash,” and do my best to make planet-friendly purchases.) The sustainability I’m aiming for is balancing the work I do in a day with the energy I have to do it.”

I made some pretty good progress on that effort to find a sustainable pace of work, and to work in a way that nourished me as well as nourishing the planet. For a while. And then my memoir, Walking Nature Home, was published and I went into a flurry of activity getting the word out, and just as I was breathing a sigh of relief and gearing down to a more sustainable pace, a couple of article assignments came in at once, so I went into crazy-busy mode again to power through those, and just as I was taking a deep breath, my previous book, Colorado Scenic Byways, won the Colorado Book Award, which generated a string of events, and when I got through those, it was almost time to prepare for the two-week artist/writer residency Richard and I had been awarded, but I also had a workshop to prepare for…. Does anyone see a pattern here?

Looking back at the year up to August 28th, when Richard began hallucinating hordes of birds, what I see is that I was talking about finding a sustainable pace for my work, and writing about it, but I was not actually doing it. Since the day when our lives took an abrupt turn into the world of neurology and neuro-oncology, I haven’t had much time to contemplate how to find a sustainable pace. Yet something very odd has happened: In the midst of the craziness of hospitals and tests and surgery and consults with various doctors and the weekly commute back and forth to Denver for all of the above, with my mother ending up in the emergency room in Denver twice, one of my freelance article deadlines suddenly being moved up from “whenever” to “the end of November”…. In the midst of all that, I’ve somehow found a pace that works for me.

What happened? With Richard’s health crisis, the focus of my life shifted from “earning a living as a successful freelance writer” to “living each day as it comes, and appreciating what I have.” That’s a pretty fundamental change. (And there I am in the photo below, appreciating some of what I have: my dad, my mom, and my sister-in-law, Lucy, at my folks’ place for a get-together the day before Thanksgiving.)

Family

Once I finish my current assignment for Audubon Magazine, I’ve resolved to take a break from magazine journalism (for a long time my bread and butter work, at least such bread and butter as the average freelance writer earns, which is, well, a bit more generous than working at Wal-Mart) and instead work on the projects that speak to my heart. I don’t know what that’ll mean for my income, but right now with Richard going into months of treatment for brain cancer, income is, perhaps oddly, not my biggest concern. Yes, I know money’s important. (It comes in so handy when you need to pay the bills.) But here’s the truth I’ve learned again in this journey with Richard’s health: It really is only money, and it really doesn’t buy happiness.

When it’s all said and done, I won’t care how much money I earned. I will care how much time I’ve had to hold Richard’s hand, to admire the blossoms of our Christmas cactus (photo below), which bloomed extravagantly this year between Halloween and Thanksgiving, to watch the moon rise over the hills, to cook a big pot of lentil soup, one of Richard’s comfort foods, using some of the last spinach and tomatoes from the garden, to listen to the creek burble past, to read a book, talk with friends, and to put my feet up on the couch and just be.

Christmascactus
Tomorrow morning, Richard and I head to Denver to begin his grueling course of daily radiation along with daily doses of chemotherapy drugs. We don’t know what’s ahead. But I know this: tonight I’m appreciating couch time. Tomorrow will be what it’ll be, and I’ll take the day as it comes, holding my honey’s hand all along the way. That’s as sustainable as it gets for me.

Think of us, please, and envision Richard whole, healthy, and happy, and me, getting my couch time and writing what I love! Blessings to you all.

The Road Ahead

Wednesday was a long day. We left home at seven-forty in the morning, as the sun was coming over the Arkansas Hills, and returned after sunset, which meant we saw some spectacular alpenglow like that in the photo below, but we didn’t get home until after dark. In between we drove to Denver for an appointment with Richard’s radiation oncologist and his “fitting” with the radiation techs who will give him his five-day-a-week doses of radiation.

Alpenglow
I’ve been thinking about what we learned, turning it over in my mind, letting it compost until I could make use of it. The most immediate news is that we know have a date for when Richard will be starting the six-week course of radiation therapy: the Monday after Thanksgiving.

By the way, if you want to know how radiation therapy works, the radiation oncologist on Richard’s case, Dr. Chen of the University of Colorado Hospital, explained it very simply: Gamma rays kill cells. But all cells aren’t equally susceptible. Those with mutated DNA like cancer cells (the mutated DNA is what distinguishes them from the ordinary cells of your body) go first. So the idea is to blast the affected area with high enough levels of radiation to kill the cancer cells and not kill the healthy cells around them. Of course, some healthy cells die too, but the plan is to keep the damage to a minimum.

In Richard’s case, they’ll be radiating much of the right temporal lobe of his brain. That means they have to be really careful to not injure his optic nerve (vision) or his brain stem (basic bodily functions like breathing and heartbeat). Yikes.

We also learned that in the case of brain cancers like Richard’s, the radiation has to be done in one continuous chunk of time. Why? Because the nature of mutation in cancer cells–and thus their resistance to the radiation–varies. The weakest cells die off first, and as the cumulative dose of radiation builds up over the course of treatment, the most resistant cancer cells eventually die too. But if treatment is interrupted for any reason, those more resistant cancer cells that have survived keep growing and dividing unchecked.

Hand

Here’s the problem: Thirty business days of radiation beginning November 30th run to the middle of January (allowing for a few days off for Christmas and New Years). Including the time between December 26th and January 3rd, when Richard was planning to travel with me to Isla Espirtu Santo off La Paz, Baja California, to help with the writing workshop I’m leading there. 

When Dr. Chen explained that the radiation would be much less effective if Richard took time off to go to Baja with me, and that make it much more likely the cancer would return, Richard asked if he could start the radiation and chemo after the trip.

“Maybe,” said Dr. Chen. But it’s risky to wait, he explained, because the tumor could return in that time. We looked at each other, and asked a few more questions. Pretty soon it was clear: Richard should start treatment on the 30th. We would figure out what to do about the Baja trip later. 

Southpark
We held hands and talked about the implications all the way from the radiation clinic on the south edge of the Metro Area to the Anschutz Cancer Center, where we found a sunny bench to eat our picnic lunch before Richard’s fitting with the radiation techs, and then we continued our discussion–and the hand-holding–on the drive across the city on I-70, south on C-470 to the exit for US Highway 285, through the Dakota Hogback, and winding up and up with the highway through the foothills, over Kenosha Pass, and across South Park in a drawn-out pastel sunset.

Before I spotted the new moon, the thinnest crescent of ghostly silver just above the dark western horizon, we had decided: Richard will stay in Denver and I will go to Baja without him. It’s a painful choice for both of us. I want to be there to snuggle next to him, to hold his hand, to make special meals, and generally coddle him throughout this grueling treatment. He wants me to take the time to do what I love. We are rarely apart, especially not at times like this. But I see his point: Sometimes taking care of each other means our paths diverge for a while. I don’t like it, but I agree.

Newmoon
This is a hard road. But we’re fortunate: no matter where it takes each of us, we still share the moon. Years ago, when work regularly separated us from time to time, we began the practice of reminding each other to look up at the moon each night, no matter where we were, and think of the other, seeing the same ghostly orb sailing across the heavens. We still do it. And sometimes we can hold hands and witness the moon together, as we did on Wednesday night, driving the last miles toward home. We watched that thin crescent disappear over the black edge of the horizon, like a silver scimitar vanishing into the night.

A Tale of Two Hospitals

Yesterday, Richard and I drove to Denver on a perfectly lovely November afternoon with no wind or blowing snow, or any of the other weather tricks that life in the Colorado mountains can conjure. We left home at a few minutes after two–right on time–and sped up and over Trout Creek Pass, across the winter-brown prairie of South Park (that’s a bit of South Park below), and up and over Red Hill and Kenosha passes, and then up and down through the Foothills and into the Metro area by a few minutes before five, skating in before the rush hour traffic got too bad. 

Southparksun
I should have known things were going too smoothly.
 
We had planned to bring dinner to my parents, who live not far from our route into the Metro Area. I called them as we left home: no answer. I left a message. I called again from Fairplay in South Park, where the cell service is good. No answer. I called again from Conifer in the foothills, another patch of good cell service. No answer. I called again from the Whole Foods about two miles from their apartment in a senior complex. No answer. By then, I was worried.

When we got to the Westland Meridian, where my folks live, we learned that my mom had been “transported” (you’ve got to love jargon that brings up images of flying carpets and time machines!) to the hospital for severe dehydration. My dad had gone along. Which hospital? Jeremy Klassen, the executive director at the Westland, found out where she was and gave us directions. (Thank you, Jeremy.)

Kids2

We drove to the hospital, and there was my mom in a room off the ER, looking tiny and and attached to more tubes and wires and monitors than I could easily count. She was sitting up though, and devouring her hospital dinner–sorry, Mom, but there is no other word for it! That was cheering. Turns out that the sore throat she reported when I called on Sunday had been the beginnings of pneumonia. Yesterday afternoon my dad got worried and they ended up in the hospital, where she was getting antibiotics from one IV bag and saline drip from another, plus oxygen whuffing into her nose, and electrodes attached to her chest to monitor her heartbeat.

She was stable though, and scheduled to be transferred to a real room for more care. After a while, we drove my dad home, and got out dinner for him from the deli stuff we brought (roasted root vegetables, rice pilaf, cherry crisp with lemon mousse–not a bad spread!).

By that time, Richard and I had almost forgotten why we ventured over the mountains to Denver. Almost. We hugged my dad and drove the rest of the way across the city to our room in the comfortable house where long-distance patients stay when they come to the other hospital in the story, the Veterans Administration’s Denver Medical Center.

Hands
This morning we woke before dawn and snuggled for a while, and then got up, did yoga, ate breakfast, and headed to the VA Medical Center in time to get a spot in the free parking garage and make his eight-thirty appointment with Oncology. The one where we expected to learn what happens next in this journey with brain cancer. Not that we were anxious or anything.

Richard checked in, and just a few minutes later, his Oncologist, Dr. Catherine Klein, came out to get us. She introduced herself, greeted us warmly, and led us back to the exam room. Over the next half-hour we learned that his tumor, a Grade 3 Astrocytoma for those that track these things, is serious enough that they want to treat it aggressively, which means six weeks of daily radiation focused on his right temporal lobe, accompanied by oral chemotherapy designed to enhance the effect of the radiation. 

Richard

According to Dr. Klein, who not only clearly knows what she is doing, she also cares about the people she’s treating, the theory is that although his tumor was clearly differentiated from the rest of his brain, the removal was clean, and he’s healing well (although he’s not back to sculpting granite yet, as in the photo above), the likelihood is very high that there are other cancer cells in the brain tissue around where the tumor was. Because cancer cells have mutated DNA, they are more susceptible to being killed by the radiation than the healthy cells around them. So the radiation with chemo to boost it targets the cancer cells, and the healthy cells are either be able to survive it, or will be able to grow back once the treatment is over. (Good thing he has plenty of brain cells to spare!) He’ll be treated in two stages: the initial six weeks of radiation plus chemo, and then a longer-term course of oral chemo for another three to four months.

The radiation treatment is daily (well, five days a week), so we’ll be living in Denver for that period and coming home on weekends if he feels like it and the schedule allows. The chemo alone we can do at home, with frequent trips to Denver to check his white blood cell count (chemotherapy nukes white blood cells, making you more vulnerable to infection).

We also learned that his brain cancer may be related to the colon cancer that runs in Richard’s family. (Four of his Dad’s six siblings had colon cancer; Richard’s sister survived colon cancer when she was in her early ’40s.) That’s a nugget to chew on, and something we need to learn more about–later. 

Sky
For now, we’re home again, and waiting to hear from the VA about when we’re due in Denver to begin the radiation and chemo–we hope as early as next week. We’re looking at the time in Denver as an opportunity to get to know the city in a way we haven’t before, living as we do in rural Colorado, and also as time to just be together on this stage of the journey. Seen that way, it’s like a residency–a residency for brain cancer though, not artistic promise. Still, it’s a period that gives us a chance to focus on what’s most important in our lives. That’s a short list: each other, our family and far-flung community of friends, our art and writing, and being able to live in a generous and sustainable way. That kind of time is precious, and we’ll do our best to use it well.

Oh, the news from the other hospital: When we left there earlier today, my mom had ordered a cheese and mushroom pizza, plus cookies to share with my dad for lunch. And she was agitating to go home. She’s going to be okay.

So are we. It may be a long road for Richard and I, but I’m sure of that.

In case you wondered, yes, I do come by my stubbornness–and my faith in love’s power to heal–honestly. The path of my inheritance is clear in the trio below.

Three