Happy Canyon, 2002 – 2016

Tonight, I went to Happy Canyon. This is hardly news; I’ve been going to Happy Canyon far too often since my third birthday, when I first attended. This year is special, though, not because it’s Happy Canyon’s 100th birthday (it is), and not because it’s my 55th birthday (which it also is) but because this year My Son the Tubist is playing in the band. We all have certain benchmarks in our lives; for me, this is one. I’ll be writing more about it later, but for now, let me share one of my very favorite Happy Canyon memories–my son’s very first visit to a place where I’ve spent an embarrassing amount of time–or I would have, if I was capable of being embarrassed over going to see the same show, over and over again, as often as I can. For years this was so I could shout at an Old Family Friend, who for years got his legs cut off four times a year. It was also because I am something of a connoiseur of Falling Off Horses, and Happy Canyon being what it is, it is the rare show that doesn’t include somebody biting the dirt. But I digress.

This story is included in Benchmarks: A Single Mother’s Illustrated Journal, but it says something I love about my life–and have loved about it for a very long time. It also serves as an excellent scene-setter. When I get around to writing about this year, you’ll have a good idea of what’s going on. This will allow me to focus on the Really Important Stuff–the tuba brumming away out of sight, a deep gold river of sound connecting my son, out of sight in the orchestra pit, and me, high in the darkened stands. Grab a cushie for your tushie (it’s necessary on those Hard Happy Canyon Benches), fill a flask with hot chocoloate or coffee laced with the alcoholic beverage of your choice, if you’re so inclined, grab a Pendleton shirt, sit back, and enjoy the show.

Painted snowcaps turn gold, then pink, as the first stars twinkle in the evening sky. Dust and summer night lie heavy on my skin. The narrow wooden bench bites into my thighs. I shift. The lady pressed far too tightly against my left side heaves a martyred sigh and looks pointedly at my too-generous hips.

“I can’t get comfortable, Mommy,” whines five-year-old Alex.

“I know,” I say quietly. “Stand up ’til it starts.”

He huffs, squirms, and stares around the crowded grandstand. “Why are the mountains pink?”

“Because the man up there is shining a pink light on them.” I point to the light guy, high overhead in his little nest in the steel girders.

“Why?”

“So it will look like it’s getting dark.”

“But it is getting dark.” Alex’s chubby finger stabs at the stars glimmering above the painted skyline.

“I know.”

“Where’s the man?”

“Up there.” I point again to the light guy’s airy perch in the rafters overhead.

“So why does the man have to shine that pink light on the mountains? Why can’t he just let them turn pink by themselves?”

“Hush!” hisses the lady beside me.

“Forget the mountains,” I say hastily. “Look, it’s starting.” I point down into the sawdust-covered arena, where a tall man in a cavalry uniform is escorting an elderly Native American man to center stage. I recognize Chief Clarence Burke’s heavily beaded buckskins and feathered war bonnet. The cavalry officer looks more like a warden than an escort. I think they might have chosen more tactfully. But this is Happy Canyon. It doesn’t pay to be too critical.

The packed grandstand falls silent. Chief Burke raises his arms and closes his eyes. His cracked, cadenced voice drifts on the night air, faint and rough as pine smoke.

“What’s he saying, Mommy?” Alex asks, tugging on my arm.

“Shhh,” I whisper. “Listen. He’s welcoming us.”

The sounds float over us, as they must have floated over the trappers, the explorers, and the missionaries. Chief Burke falls silent. His arms drop. The cavalry officer steps up to the microphone. “Chief Clarence Burke of the Umatilla Indians welcomes you to Happy Canyon.” They turn and pace out of the arena. Music swells, lights go up on a line of tipis, and we are in Happy Canyon.

I settle back—at least as much as one can settle back on a narrow, unpadded wooden bench.  Alex stares open-mouthed at two Native American men carrying a deer down a switchback trail to the village. A deep, unmistakably Native American voice informs us that one of the young men has shot his first deer and is now eligible to marry. It’s been nearly ten years since I last visited the canyon, but I remember this part and cringe in anticipation.

This is how it has always gone: The happy couple stands on the second level of the four-level stage. Somebody backstage plays a scratched recording of “The Indian Love Call.” Then the newlyweds walk down the path to the first level, perform a wedding dance with their friends and family, and go into a tipi at the edge of the village, presumably to make sweet, sweet love.

Happy Canyon may have been an annual visit for me for nearly twenty years, but it’s Alex’s first time, and I’m not sure that his manners extend to enduring a crackly recording of a song that sets even my teeth on edge.

I lean down and whisper, “There’s going to be an awful song now, honey, but I need you to just not say anything, okay?”

“Okay,” he whispers absently. “What are they doing with that deer?” His eyes never leave the arena, where the village has awakened and people in richly beaded buckskins go about cooking, fishing—there’s a pool down there—visiting, trading, celebrating the young man’s first kill, and preparing for his wedding. I dig in my purse for backup. “Here, have some chocolate milk,” I whisper, thinking that the bottle will muffle any cries of pain or outrage the scratched record may provoke—and in the meantime help him forget about what seems to be happening to the deer.

He sips, still gazing at the village. A woman’s voice, still unmistakably Native American, informs us that the wedding is being celebrated. Sure enough, the couple, their friends, and family are dancing the wedding dance to the beat of drums. There has been no “Indian Love Call,” and I’ve never heard a woman narrate the pageant. Well, well, well. The times, they are a-changing in the canyon.

The dancing ends and the happy couple heads for the end tipi. Village life goes on. Trappers, explorers, and missionaries arrive. A lone wagon creaks in. The woman’s voice, deep, cadenced, and filled with old sorrow, tells of a clash of worlds. Fighting breaks out. A white girl is dragged into the village, screaming. A few minutes later men on horseback pound in, firing blanks into the air. Chaos erupts. The girl leaps onto a running horse and escapes. The villagers scatter.

More wagons roll in. Pioneers climb wearily out and gather around the campfire cooking, singing, and dancing. We in the stadium sing with them: “Skip to my Lou,” “Sweet Betsy from Pike,” and “She’ll Be Comin’ ’Round the Mountain When She Comes.” Feathered war bonnets appear among the bushes, and more fighting breaks out. The cavalry arrives. A man in a frock coat rides in and the tribal leaders negotiate. The woman tells us how the tribal elders signed away their birthright without knowing it because it had never occurred to them that one might presume to own the earth.

At last the end comes. The tipis are struck and loaded onto horses. The village dies. The woman tells about life on a reservation created from wasteland, about the struggle to maintain a cultural identity in a world changed beyond recognition, about working with one’s enemy for the common good, about salvaging life from destruction.

“When are they coming back?” Alex asks.

“Never,” I say, and I am sad.

The lights go down. “Wham wham wham wham-wham smack!” echoes in the darkness. The lights go up on a frontier town. Dance hall girls walk the streets. The town drunk staggers across the sawdust arena and tumbles into the pool where the Indians fished, pops out, and hotfoots it back to the saloon. The Pony Express rider flashes in, switches horses, and flashes out.

The stagecoach rolls in. A redheaded couple emerges. They supervise the removal of their steamer trunk from the rear of the coach, open it, and pull out eight children, all attired in bib overalls and red yarn wigs. A group of pigtailed Chinese men trot over, hands tucked in sleeves, bowing. The blatant ethnic stereotyping appalls me. I am amazed it has survived. The laundrymen don’t seem to find it troubling; they hustle the family into the laundry. A few minutes later the family emerges clean and pressed. Boys in flesh-colored tights plunge into the pool to emerge dripping and screaming.

“What’s going on?” Alex asks.

He might well ask. Happy Canyon has no plot. Rather, it’s a whole group of subplots, which, because the performance is live, using live animals, antique props, and amateur performers, may or may not happen the same from night to night, or from year to year.
“Just watch,” I say. A mismatched couple drives in, the wife tall and muscular, the husband delicate and natty. He grabs a dance hall girl and bends her over his arm like Rudolph Valentino. His wife spots him and, together with the other god-fearing women of town, attacks him with a broom. The Chinese laundrymen rush out, pull him to his feet, and drag him into the laundry. Moments later he emerges clean and pressed. His wife tosses him onto the buggy seat and they drive off.

“When are the Indians coming back?” Alex asks.

“They’re not,” I whisper back.

The dance hall girls do a lively can-can to a rollicking tune that has us all clapping and stamping. The pageant is nearly over. A Native American man mounted on a pinto pony races across the arena. An American flag flutters over his head. Man and pony zigzag up the trails high into the scenery, and come to a halt on a painted mountaintop. The flag flutters in the golden spotlight. The orchestra strikes up the national anthem. We stand.
Ten years ago, the response was half-hearted. Some stood, hands over their hearts. Some stood laughing and talking. Some slouched in their seats. But this is September 12, 2002, a year and a day after the World Trade Center fell. Today there are two spotlights on the stage. One is trained on the Native American man, his pinto pony, and his flag. The other rests on three uniformed men standing on another painted mountaintop across the stage. The men are three tanned local boys with sunburned, muscular necks, hair like ripe wheat, heavy shoulders. I suspect they spent their summer driving trucks and combines and going into town on Saturday nights to drag race on Main Street and drink beers with their girls in the parking lot up by the old Carnegie library. I wonder where they will be a year from now.

But next year is next year. This year everyone stands, and everyone sings. We sing about rockets’ red glare, bombs bursting in air, and how we saw through the night that the grand old flag was still there. We sing about spacious skies, amber waves of grain, purple mountains, abundant harvests, and about how this land was made for you and me, and I feel again the tug of this land where I was born, and I know again that while some people can leave their birthplace and remake themselves in strange lands, I am not one of them.
I tried. I left as soon as I could, and I only came back under duress. Walking the familiar roads and fields is as much pain as homecoming. Every step holds memories I have worked hard to erase, as well as memories I cherish. And yet as I stand here in this darkened stadium, singing along with a thousand people, staring down at the lit representation of a past that never was, breathing in the heady fumes of beer and popcorn, I am again a little girl, a teenager, a fledgling woman, and the night again holds the magic of endless possibilities.

A whiff of charbroiled hamburger from the Charburger Drive-In across the street tickles my nose, and for a moment I am jammed into one of its battered booths with my sisters and as many of their friends as my Grandpa could shoehorn into his car. Each of us has a charburger, a shake, and fries and dipping sauce on  the table in front of us. And as the crowd we are talks, laughs, and teases, Grandpa looks at us all and smiles. When his gaze falls on me he leans over the table and flicks my french fry box with one gnarled brown finger. “You eat these, doncha, Bodie?” he asks. And I smile and nod and eat a fry to please him, even though the Charburger’s fries aren’t all that great unless you eat them really, really fast, before they cool.

Back in the stands, Alex leans against me and lays his head on my shoulder. I lift him and settle him on my lap, falling into the slow, easy sway that is the mark of mothers in my world. I lean my cheek on Alex’s curly hair and sing softly about Betsy from Pike. But I am not really thinking about the songs anymore.

The falling of the towers has reminded us all that America’s freedoms, privileges, and resources are not givens. We are not sure how to best preserve them, and the debate is growing increasingly bitter, but we are all agreed that we have taken our gifts for granted for far too long.

“Look, Mommy, they came back,” Alex says happily, lifting his head from my shoulder. He’s right. The Indians have come back. Along with the rest of the cast, they fill the painted mountains and forests, surround the man on the pinto pony, the flag, and the sunburned local boys. They spill over into the sawdust, buckskins mingling with calico mingling with cavalry blue with sequined velvet and feathers. Alex heaves a happy sigh, lays his head back on my shoulder, and is instantly asleep.

I drive back to my mother’s house through streets full of what we scornfully called “drugstore cowboys”—all hat and no saddle was how we described them. There is dancing on Main Street. The carnival is in town, as it is every year, and as I ease my car through the crowds on Main Street the lights of the Ferris wheel circle overhead. The warm fragrance of corn dogs and cotton candy fills the car. I speed up as I head out of town then slow down again and creep carefully up the steep, rutted track that leads to my mother’s house high on a hill overlooking the Umatilla River Valley.

As I round the last corner I see that she has left the porch lights on for me. For just a moment my stomach twists in the old, familiar cocktail of fear, love, pain, and aching sweetness that I felt each year at the end of summer. And at last I understand what it is. It is the pull of the land. I was born less than sixty miles from this spot. I grew up here. I ate foods grown in this soil. I gave the land my sweat and my labor. In turn, the land gave me what I needed to survive—food for my body, and food for my soul.

It gave me cool mornings scented with wet grass and alfalfa. It gave me ripened wheat fields under scalding sun. It gave me desert hills split by long, straight roads shimmering in the summer sun. It gave me cornfields rustling in the night. It gave me the howls of coyotes, the clatter of balers, the whistle of the wind, and the cries of killdeer, meadowlarks, and mourning doves. It aged me. It renewed me. And sometimes in the evening when the sky turned to pearl, silver, and cobalt and the chill wind cut through my T-shirt and bib overalls, I hardly knew where I ended and the world began. This land was my land.

And I walked away—ran away, actually, driven by demons I didn’t understand and couldn’t have faced if I had. I ran away, but now I’m back, and as I pull into my mother’s driveway I understand the truth—I might have belonged here once, but I left, and the world from which I fled went on without me. Tonight has been a taste, just a taste, of one of the best parts of the life I left. And now I must walk into the house, and face down the fears that drove me away in the first place. I carry Alex inside, slip him into his pajamas while he sleeps, and pull on my nightgown. The fresh smell of soap and sunshine surrounds me, and I realize my mother has been busy while I have been gone. I lie down beside Alex and pull the fresh sheets over us.

I close my eyes and think about Happy Canyon. I remember the drums, the chants, the measured, dignified dances, the wagon train’s fiddle music and square dances, the can-can girls, and I realize that in spite of past injustices and wrongs, in spite of culture clashes, we who belong to this land—even those of us who have left, and are just beginning to find our way back—have something in common. We have our songs. There are the songs that divide us—and sometimes set our teeth on edge—and the songs we sing together. We would be the poorer for losing either.

I think again about all of us in the stands, singing together. I marvel that so many of us can remember the words, and I wonder. In twenty years, will Alex bring his children to Happy Canyon? Will the stands be full of people who remember to stand, and who still know the words of the songs that bound us tonight, as well as the songs that divided us? Will Alex know our songs? Will I remember them? Will I have made this land Alex’s land? Will I have earned my right to again call it my own?

The next morning Alex and I start the long trip back to our apartment in Gresham. On the way out of town I stop at the music store and buy a song book.

 A note about the illustrations: These are based on some art I developed for a traveling exhibit of the Applegate Trail a number of years ago. The Southern Oregon Historical graciously agreed that I might use them, provided I mention their name. So I did. Thanks, Southern Oregon Historical Society–I wish I lived close enough to still do stuff for you. I think of you often and kindly.

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Sitting In

Way back, oh, several years ago, I edited a book for Dr. Joseph Pinzone. The book’s title was Fireballs in my Eucharist: Fight Cancer Smarter, and it felt a bit personal. Most of the time working on somebody else’s book is delightful because I am exploring strange and virgin territory; in this case, though, Dr. Pinzone was providing a roadmap for a route I’d already traveled–the journey through a cancer diagnosis, written by a doctor who had known how to listen as well as talk to his patients. In my case, the diagnosis was my dad’s, and editing the book brought back a lot of memories. And then it went to press, and I forgot. Or almost.

When my doctor called with my initial diagnosis I remembered exactly one thing from Dr. P’s very excellent book: He advised designating someone to go with you to appointments, to take notes and serve as a second set of eyes and ears. My first decision was to ask my sister Sandy to help me with the medical stuff. This is because she’s worked in medical and research communications for years. She knows the lingo. She knows the systems. And she knows me well enough to know how those things apply to me, my diagnosis, and my life. I did a smart thing in asking her. Kudos to me.

What I hadn’t considered was that my surgeon and the head of my treatment team, Dr. Gray, would also find it helpful to bring others to our meetings. I hadn’t expected my treatment to be such a team effort. Before I arrived I had thought it would be Marilyn, Dr. Gray, Sandy, and me. And then I got there.

Here’s a little tidbit for those of you who are unfamiliar with gynecologic oncology: It’s a messy, messy discipline. In the years leading up to the last few months I had given up on the impossible goal of feeling clean, and settled for just not having blood visible on my clothing. I had grown used to slamming awake at night knowing that if I didn’t get out of bed and to the bathroom immediately I would be leaving a trail of blood in addition to having to change my sheets and pajamas. I had completely given up on scheduling pap smears because the bleeding never stopped, and the doctors I tentatively asked about it indicated that doing an accurate examination  around heavy bleeding wasn’t the textbook way to do it. I packed my purse with pads and extra underwear, got used to wearing four pads at a time and never getting too far from a bathroom. I gave up ever wearing light colors. I chose patterns that included splotches of red. I learned to sit on hard plastic chairs in public–never, ever, anything upholstered. And because this all crept up on me, I didn’t think too much about it. It was just the way my life was.

So then I got to SCCA for my pre-surgery appointment. The office nurse who went over my preliminary history with me had clearly read my records, but then she did something a little bit different. Instead of just reciting the facts, she told me my story–I think she called it a “narrative,” but I write stories, so I knew it for what it was. This was the story of me, and my lady parts, and how we had gotten from what amounted to an armed truce to open warfare.

In order to tell that story, she had to not only have my records at her fingertips–she had to know them. She had to understand the cause and effect relationships. And when she finished, I knew that I was more than just a collection of medical data–all those details could be arranged and understood in terms of story. It was a little flattering. This bright, intelligent person had made a story about me!

And then the hammer dropped. “Dr. Gray will be in to do an examination,” the nurse said. “Please take off your clothes and put this robe on.”

And there it was–the old problem. Because of course I was bleeding again. A lot. My doctor at home had put in an IUD a month before to try to stem the tide, and in the beginning it sort of had. But the week before my trip to Seattle my body had managed to override the IUD and we were back to business as usual. And now I was supposed to take off my clothes and bleed all over this beautiful office in front of beautiful, poised, professional Dr. Gray. I felt like a slug.

“Can we put something on the bench?” I asked shyly. “I’m bleeding.”

“It’ll be okay,” said the nurse.

“But I’m bleeding,” I said again.

“Honey, welcome to the world of ob/gyn,” she said kindly. She wasn’t going to cut me any slack. Bleeding or not, I was going to get examined.

I took off everything except for my underwear. Dr. Gray and her nurse came in, and I carefully, reluctantly, peeled away my last defense, hoping against hope that I wouldn’t get blood on the floor, and if there was blood, at least no massive clots.

It was not to be. By the time I had assumed the position I could feel the hot blood and gelatinous clots slipping free. “I’m so sorry,” I said, mortified.

“I can’t find the IUD string,” said Dr. Gray. She tried again. The IUD was nowhere to be found. “Maybe your body expelled it,” she said at last. “That would explain the bleeding. If it’s in there, I can’t find it.”

“I’m sorry,” I said again.

“It’s okay,” Dr. Gray said. “This is what we do here.”

Exam over, she pulled off her gloves and left me to get dressed again. The base of the examination table was smeared with blood, and clots lay on the floor. But by then it was too late to feel humiliated–Dr. Gray and her nurse had been right there in the thick of things, and they had both said that this was their world. I took a little comfort in that as I did my best to wipe up the worst of the mess.

And then we met for the post-exam, pre-surgical consult. As I said, I had known that Sandy, Dr. Gray, and I would be there. What I hadn’t expected was two of Dr. Gray’s nurses to be there, too. We sat around a table in a quiet, cozy little room, and Dr. Gray told me what she had found.

She explained that my diagnosis wasn’t quite as clear-cut as it had seemed back home, that there seemed to be a mixture of cancer types, and that there was some indication that things weren’t as advanced as they had at first appeared. She drew a picture of my lady parts (for a mad moment I thought of offering to do the honors, since I’d been making uterus pictures for the last month, but I managed to bite back the impulse).

And then she stopped, and one of her nurses took over, asking questions filling out forms, discussing nursing-related things in soft, gentle tones. I felt myself ease a bit.

Dr. Gray took over again. She explained the surgical procedure. She laid out risks and rewards. Sandy took careful notes. I heard her pencil scratching across her pad behind me and felt comforted–I could just listen and try to understand. Sandy would remember for later.

And so it went, each of the professionals on the SCCA team taking it in turns, managing the flow of information so I could absorb it, stopping to answer my questions. At the end of the meeting Dr. Gray and her nurses gathered up all of the papers, put them into a large manila envelope, and gave them to me to pass on at my appointment with the anesthesiologist. Thanks to Marilyn, I knew where and when that would be. I was ready.

I don’t often think of meetings being “scripted,” and even seldomer do I consider that a good thing. I don’t know if Dr. Gray and her associates had actually sat down and planned that meeting out, but I can say that as Sandy and I walked through the lobby on our way to the elevator I said, “Damn, that was well-scripted.” And it was.

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Sh*t Got Real…

It’s been a few weeks since I’ve posted. I’m sure those who are not my facebook friends were waiting with bated (I’m always tempted to write this “baited”) breath to learn if I survived (spoiler alert: I did).

I survived the trip to Seattle. I survived the pre-surgery consult. I survived the surgery, once the doctor realized that my lungs don’t LIKE IT WHEN I’M STANDING ON MY HEAD (more of this later). I survived that damned easy-access pain medication button, once I banished it from my bed (more of this later, too). I survived the trip home. I survived a couple weeks of healing. And now I’m surviving an infection that makes me look like a kangaroo.

My survival is something of a delightful surprise to me–like many people who find themselves flirting with the Big C, once I Left the Happy Land of Denial(this happened two days before I had to go to Seattle for surgery) I found myself confronting my mortality in all sorts of unexpected ways.

Because I’m a mom, my first worry was for how my son was going to survive without me. At times like this I tend to obsess. I know this because it first happened when I was pregnant. The pregnancy was unplanned and I was doing it solo, and let’s face it, at the time I was far from a sterling example of mental and emotional health. The doctor had yanked my anti-depressants as soon as the test came back positive (I was already three months pregnant–my recent trip to the Happy Land of Denial was not my first visit). I was dealing with the fallout from the vicious gossip being spread by one of my Nearest and Dearest–gossip specially crafted to undermine any emotional support others might want to provide. My relationship with my son’s dad had ended six weeks before I realized I was pregnant. Things were stressful at work. My counselor had about given up on me.

Looking back, there was too much–too much uncertainty, too much guilt, too  much shame, too much failure, too much loss. “Pick one thing,” some secret part of me advised, “and focus on that.” And so I did. In the midst of all the uncertainty and the variables (Where would he go for day care? How would I earn enough to keep us? How would I manage to keep him fed? What if I dropped him? What if I turned into the thing I most feared–an abusive mother?) Somehow my brain screened out all those very real concerns and gave me one manageable worry: How would I keep my baby warm?

I dug out my fabric reserves and visited the fabric stores. And then I started making baby blankets. I made quilts, mostly–lovely pieced quilts, full of fluffy batting. And then I bought my baby clothes–in sets. I bought onesies and sleepers, mostly, and receiving blankets that coordinated with everything, because I was planning not for a baby who was going to be making a public splash, but for a baby who was going to live his life in soft jammies, cocooned in color-coordinated quilts. I might not have formula. I might not have diapers. I might not have a car seat. I might have no idea about daycare, or juggling a baby and a career. But my baby’s clothes were going to match ALL of his blankets, and he was going to be by all gods warm. When he finally arrived I had a stack of baby quilts two feet high in the corner of my bedroom.

I realized how scared I was at the idea of cancer, and Seattle, and surgery, when I found myself blithely glossing over things like tests, my will, my advance directive, getting my records from my doctor here at home to the surgeon at Seattle Cancer Care Alliance, arranging the trip to Seattle, and tracking down the hotel once I got there in favor of one simple, manageable worry: Would The Boy have enough to eat?

I filled the freezer with healthy frozen meals. I bought bread and sandwich fixings. I bought breakfast stuff. I arranged with friends to play backup, should the freezer fail him. And every time we drove past Safeway, I found myself asking, “Is there anything we need to buy for the freezer? What are we missing?”

To which The Boy replied, “Mom, we can’t get anything else into the freezer. It’s full. I’ll be fine.”

And I knew he would be–if I could just remember that one magic thing, that one missing ingredient, that would spell the difference for his survival. Leaving someone you love, no matter how capable they may be of managing their lives, is hard, and it’s scary, particularly when you have no assurance of the outcome.

It was winter, and we were going to be driving through the mountains. What if we had a wreck? What if the passes closed and I was trapped in Seattle? What if once I got there everything fell apart, and I had to come home and start over, and all the while the cancer grew and grew? What if my sister–who was meeting me in Seattle so she could go with my to my appointments and see me through surgery–and I had a huge fight? I pictured us trapped in the hotel room, prisoners of the love we bear for each other, wounded by our sometimes-prickly personalities. What if I just plain got lost?

I pictured The Boy marooned at home, the freezer empty, the house freezing because the power bill hadn’t been paid (I’d paid a month ahead, but who knew how long I might be stuck in Seattle?) withering away, lonely, starving. And cold. Very, very, cold.

I think the hardest thing I had to do was drive him to school the morning before I left, say goodbye cheerfully–and then not stop by the school on the way out of town for one last look at the person who has made my life worthwhile. For his sake, I pretended that all those fears hadn’t even crossed my mind. I pretended that I was positive I’d get to Seattle, everything would go well, and I’d be home by the weekend. I pretended–but I left town fearing that I’d never see him again.

Lest you think harshly of me, let me explain. Seattle Cancer Care Alliance was not my first choice. My doctor recommended that I go to Oregon Health Sciences University, and since I feel my doctor generally has my best interests at heart I took her advice, way back when I first got the diagnosis. I went home and called OHSU’s Gynecological Cancer Intake number.

“What’s your diagnosis?” the woman on the phone asked.

“Serous Carcinoma,” I said.

“End-o-me-tri-al Can-cer,” she said to herself, presumably as she wrote.

“No,” I said, alarmed. “My doctor says it’s serous carcinoma.” Like about everybody in my position, I had immediately googled the term and learned that serous carcinoma sometimes appears in the uterus, but that it’s a different animal than the more common endometrial cancer.

“It’s easier to spell,” the woman said.

I have to admit that rocked me back on my heels a bit–was OHSU keeping patient records, prescribing medicine, and operating patients based on what they found easy to spell? I hoped not.

“You’ll have to get me your records,” the woman said. And she gave me a fax number.

I called my doctor’s office and arranged for the records to be sent.

The next day I called to check. This time I got a man on the line. “No, we don’t have your records,” he said. “What’s your diagnosis?”

And so we went through it all again. I got another fax number. “Do you think it might be possible to arrange my pre-surgical consult and my surgery within a few days of each other?” I asked. “I’ll be driving for several hours to get there, and hotel costs for an extended stay will be hard.”

“Do you have any idea how big an organization we are?” he inquired. “We can’t make special accommodations like that. We can’t schedule the surgery until you’ve had the consult.”

“Even though I’ve had a D&C and a CAT scan, and have a diagnosis?”

“We can’t schedule the surgery before you’ve had the consult,” he said implacably.

“Would it be possible to talk to the doctor, or her nurse? Maybe if she understands the situation we can figure something out.”

“No,” he said, and then did a quick reprise of  “Do-you-have-any-idea-how-big-an-organization-we are?”

I called the next day to inquire about my records, and got a third person, who had also not seen my records. She gave me a third fax number and assured me it was right next to her desk. I hoped so. I asked to speak to someone in billing, so I could be sure my health insurance was acceptable.

“We don’t do anything like that until we schedule the surgery,” the lady told me.

About then I started seriously wondering how this was going to work. They wouldn’t schedule the pre-surgical appointment until they had my records, which were apparently going to a fax somewhere in a yurt in Outer Mongolia. They couldn’t tell me if my health insurance was valid until the surgery was scheduled. They couldn’t schedule my surgery until I’d had the pre-surgery appointment. And all the while the cancer was growing.

And that was when my sister Sandy got serious about figuring out a way I could go to SCCA. I’d found it online. Its outcomes were good. It was ranked fifth in the nation. It turned out that Sandy had a former colleague and friend who had worked at the Hutch. She offered to show me around. Other staff members did the same. Before I ever called, I felt like they knew me there. I felt like I mattered to them.

Still, though, it was not without trepidation that I called the SCCA gynecologic oncology intake line. My experience with OHSU had made me wary.

“Hello, this is Marilyn,” said a lovely lady. “How can I help you?”

I told her my diagnosis, and asked if it might be possible to be accepted for treatment at SCCA.

“We’ll need to see your records,” she said, and my heart sank. “If you’ll give me your doctor’s phone number, I’ll arrange it,” she finished.

And that right there was the beginning of a beautiful friendship, because Marilyn became my friend–my smart, plugged-in friend at SCCA, the person I asked about everything–and she’d answer my questions, explain why the answer couldn’t yet be determined, and sometimes tell me who could give me the answers I needed. Marilyn was there for me. When I called, I talked to her. She knew my case. She knew my concerns. She got my damned records the first time. She told me who my doctor would be. She explained the relationship between the Fred Hutchinson Cancer Research Center, Seattle Cancer Care Alliance, and the University of Washington Medical Center (it’s a little bit complicated, but the benefits make it worthwhile). She sent me information on places to stay. She helped me work out a pre-surgical consult and a surgery date that were within a couple days of each other. I relied on Marilyn. I loved Marilyn. I still do. I’d have a baby for her, if that ship hadn’t sailed.

Leaving my son home alone while I went far away to a city I didn’t know for a surgery that either would or would not turn out well was hard. Marilyn made it easier. My good friends the Mulders, who drove me up and then waited to drive me home afterward made it easier. My friends Megan, and Marty and Morris, and Leatrice and Mike, and Amber, and Terrie, and Sylvia, all made it easier. My son’s professors made it easier. My sister Sandy made it easier. When I got home, my mom came and stayed and made it easier. Cancer is hard. Dealing with it requires finding a provider who offers the best science, and the best outcomes. But I was lucky. In the midst of the hard stuff, I found a whole world of people willing to carry a bit of the load.

And that’s important, because there’s more to cancer than a tumor. There’s also an intensely human side to the equation. I was a mom, worried about my kid. I was a sister. I was a professional woman worried about my clients. I had a long drive and not a lot of money. OHSU has excellent science. But based on my experience, they have forgotten they deal with people.

“Do you have any idea how big we are?” the man asked. Clearly they were too big to do something as simple as assign a single intake person to minimize confusion. They were too big to understand that some of us deal with tight budgets, and the uncertainty of a long hotel stay or multiple five-hour-one-way drives can become insurmountable obstacles at a time when we just can’t afford them. They were too big to keep track of my damned medical records. They were too big to write down my diagnosis using the most specific term, simply because the more generic term was “easier to spell.” I hung up thinking that perhaps OHSU was just too damned big, if it had come to see its patients as something other than human beings.

And that was why I found the sheer size of the Seattle Cancer Care Alliance startling, once I arrived for my pre-surgery consult. As my sister and I sat in the lobby waiting for my appointment I leaned over and whispered, “It’s a lot bigger than I thought it would be.”

My sister, who has a long and illustrious history doing media relations and communications for world-class medical centers, looked startled. “What were you expecting?” she asked.

“Oh, maybe a couple of rooms,” I said. “We’d come in and check in at a counter, and Marilyn would be in the back, and there’d be maybe a doctor’s office or two…”

Sandy snorted, but quietly–the SCCA lobby was quiet and serene; it didn’t encourage excessive personal expression in the way of snorts.

I never got to meet Marilyn while I was there–her job was to smooth the way, to guide me gently through the hard, complicated, terrifying business of preparing to deal with my cancer. Once I arrived at SCCA I became other people’s responsibility. But Marilyn was my first, and best, friend there, and much as I love her, I hope we never have to speak professionally again. Good luck, Marilyn, wherever you are.

 

 

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Future Present

Here’s the thing–what with one thing and another in my life, I learned long ago that the future was uncertain. The corollary to that, of course, was that I had to take whatever immediate gratification was on offer. I have never had a substantial savings account. I have no 401k, or retirement savings. I can’t save for a vacation. I’ve always seen this as a disadvantage–and it has been. Not being able to believe in the future has meant that I have lived in the eternal “now,” and sometimes that was a nice place and sometimes it wasn’t. Moreover, my passage through “now” has been a bumpy road–lovely highs and terrifying lows, many of which might have been smoothed out by a little planning and foresight. And those are, regrettably, not within my skill set.

When I got the cancer diagnosis “now” was terrifying. I rushed around and did all the things that my “now” demanded–I made a will. I signed an advance directive. I signed a power of attorney. I added my son’s name to my bank accounts. I got the car ready for him to take his driver’s test. I paid the bills ahead. With the help of my amazing sisters I found a top-notch cancer treatment center and scheduled my surgery. With the help of my mom I found a ride up and back. With the help of local friends and some of my friends from back in my college days I’ve arranged for The Boy to get to school and back, and have company for the nights I’m gone, if he wishes it.

Then I was ready, and it wasn’t yet Christmas. And here’s where the gift of my “eternal now” comes in. Because I had done everything I could do, I was ready to go to the hospital. And because it had now been a couple weeks, the “now” of the diagnosis had faded into the past. The “now” in which I have lived the last two weeks has been great–we’ve had a lovely Christmas. We spent time together. I enjoy my work. I’ve been doing creative stuff (yet another uterus picture, since you ask–one that sent of of my son’s friends shying backward like a startled colt when he saw it yesterday, then provoked spasms of laughter). I like my clothes. My house is a mess, but that’s all right, sort of. I’m doing important things in my “eternal now.”

If I had the gift of foresight, this might be much, much harder. As it is, I know in theory that this might not turn out well–and so I’ve done whatever I can to hedge against that. Some of that creative writing I’m doing is stuff I want my son to have–stuff that I think he might find comforting and important if things go really, really badly. That’s the reason he’s now on the bank account, and the car’s ready as soon as he can take his driver’s test. That’s why we have a backup network of friends and family.

Things might go badly. I might die. But I’m not dying today, and chances are I won’t be dying for at least a few months–even if the very worst happens. So for me, in my “eternal now,” things are great, and I’m holding onto that.

I’m not stupid, even if I am shortsighted: I know things are going to be worse before they’re better. But for right now, they’re good. And I’m relishing that.

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