October 2009. We sit on the terrace of a hotel restaurant overlooking the plains of Andalusia. On the simple white plate in front of me there are silvery-white sardines in a dressing of vinegar and oil. They are served with coarse bread and a scattering of tiny, bitter olives. My husband, Robert, sits across from me, his white sailing hat on his bald head. When his sparse and getting sparser hair got to a monkish fringe, he shaved himself bald and grew a rakish, scrupulously white beard. He is sampling white beans in a pungent sauce heavy with garlic. That day, white is a grace note in the excellence of our time together, but, as has been usual these past several weeks, my husband hiccups while eating. We both sip mineral water.
“Such a pest,” he says.
The hiccups stop, only to start again a few more times. Finally he eats without interruption.
We drive north and pass a line of dusty hills with Quixote’s windmills stationed on their crests. Modern turbine towers will probably come to take their place one day. We reach Toledo and spiral down the gorge that El Greco saw those years ago. We have a lunch of aged Manchego in a shop that tolerates rude tourists who wish to consume their booty on the spot. The proprietor offers paper napkins and a pair of wooden chairs. We must look older than we feel.
On to Madrid and Barcelona. At each meal my husband hiccups for a time.
“I wonder what that’s all about?” he says.
When we return to California, his internist prescribes a medication. The internist is ruddy of face, bulbous of nose. His tie is gaudy and his shoes unshined, but my husband trusts him. The drug changes nothing. The internist suggests a gastroenterologist to see what’s going on down there.
“Just a precaution,” the doctor says. We proceed to the endoscopy, all innocence.
It is an outpatient facility, new and decorated with plants that have not yet given up trying to grow without light or water. The wait is short. I am told to be back in an hour. I return to our house, which is only a few blocks away, to check my emails. The garden outside my window, and the Santa Inez Mountains in the distance, are bathed in the pearly light of fall in late morning. The leaves on the Bradford pear have turned burgundy red.
When I return to the outpatient facility, a nurse brings me to my husband’s gurney. He is pale but alert. He doesn’t smile.
“I didn’t take the anesthetic.”
“How did that go?”
“Not too bad. If you concentrate on the medical bill.”
We both laugh and it breaks a stricture in the room. I am comforted that he has his sailing hat on his head and looks familiar, even jaunty.
The gastroenterologist is handsome—fine graying hair, excellent teeth, a flat belly. We watch him make entries in my husband’s file at a small desk just across the recovery room. There are two or three other patients lined up against the wall, some easing out of the anesthetic, some waiting, just like us. Pale-blue curtains separate each cubicle, and I notice that the nurses’ outfits, the blankets, and the wallpaper on one wall are coordinated with the same shade of blue. Is there such a thing as a decorator for outpatient medical facilities?
The doctor approaches with a sheaf of papers in one hand and a series of digital photos in the other. He pauses and takes a breath. Then I know, this is bad. The doctor has been talking to us for a few minutes, describing the procedure he has just finished, but he starts off with the diagnosis. Carcinoma of the cardia…
“That’s cancer, right?” I say, feeling stupid the moment the words leave my lips.
He seems to nod, I’m not sure now, but he doesn’t disagree. One photo he presents shows a pink, glistening structure, a healthy cardia. This is a teaching moment. I learn this is the anatomical term for the part of the stomach attached to the esophagus. Then, in contrast, we see the portrait of a gnarly, blackened, misshapen bulge. It resembles a truffle. There are spots of white sludge and a sickening yellow patch or two. This is my husband’s cardia.
Now that we have gotten definitions out of the way, the doctor describes the extent of the lesion and the stenosis created by the tumor. The hiccups could well be caused by the cancerous bulge pressing on the vagus nerve. He is clear, gentle, thorough. He holds nothing back.
“I know this is a lot to take in,” he says, looking from one to the other.
“What’s next?” asks my husband.
We are told to wait for the biopsy to confirm his opinion. Then we will come in for a consult and go from there. Wherever there is.
Biopsy confirmed, we travel 160 miles south for the consultation with a team of doctors who will try to determine just how lethal this tumor is by using a more sophisticated ultrasound procedure. We meet half of the endoscopy team, a dapper stand-in for Bruce Lee. The doctor wears a crisp, white shirt and a red, silk tie along with a pair of navy-blue chalk-striped trousers. He is just my height and probably weighs at least ten pounds less, all sinew and muscle. He is a neat package of competence. Having just emerged from the operating room, over the trousers he wears a set of pale-blue surgical booties that come up to his knees, giving him a rather seventeenth-century look.
The examination involves an instrument several times larger than the one already used for the first biopsy, hence sedation is required. Around us in the pre-op cubicles, I hear discussions between patients and doctors dealing with pancreas, liver, colon, spleen, all medical cases in varying stages of recovery, collapse, anguish, uncertainty. No one wails or cries out. It is all data, delivered and received, with the utmost in politeness observed. I cannot make enemies of the people who will save us, so I repress the urge to shout in terror. Robert receives an infusion of sedation and is bumbled off for a one-hour scope.
When our doctor re-emerges from surgery, he has added the jacket matching his chalk-striped pants and removed the blue booties; now he looks like an Asian Nelson Detroit. His mood is elevated. He has determined the tumor seems contained and my husband has a good chance.
“What’s next?” says Robert, the universal bridging phrase of cancer patients.
“Get it out, now.”
“Whom would you recommend?”
“He is my friend, but if I had this in my body…”
Two weeks later we travel south again, this time to meet the surgeon. There are options in this business: surgery first, then radiation, perhaps also chemotherapy. Or maybe no surgery, only radiation and chemo. Or maybe just chemo. All depends. How to decide? In fact, as in all this family’s conundrums, our patient makes the first move. My tendency is to research the problem away and stall for time. Maybe there was a mistake? Maybe the endoscopy was wrong, the paperwork mixed up, the equipment faulty. Robert cuts through this. He steers the course as he always has when danger lurked, whether it be sailing on the ocean or wandering at night through a foreign country’s tougher neighborhoods. He will try surgery first.
The surgeon is Vietnamese, handsome, brisk. He has dark hair, tousled appropriately for an abstracted genius. His restless glance darts from my husband to me to the resident Fellow who is learning the trade and eager for complications. Back and forth, a kind of impatience. This is one of those tough foreign neighborhoods. He shakes hands with Robert and calls him Buddy, a term I think he must have learned at bedside manner school. No one else would dare call my left-brained physicist/patent lawyer husband Buddy. But this surgeon is a model of the profession—confident, quick, even arrogant. When facing a murderer, my husband will choose an arrogant duelist every time.
“What’s next?” Robert asks. That phrase again.
The doctor rips a sheet of paper from a nearby pad and makes a few brisk marks.
“Here’s the esophagus,” and he draws two lines and a slash about halfway through. “Here’s the stomach,” and he draws a circle with a slash through the top third. Pointing to a round blob which he inks between the esophagus and the stomach, he says, “Come out, all around this!” pointing to the two slash marks. We get it. He wants to take out half of my husband’s esophagus and a third of his stomach. It’s called an Ivor Lewis resection.
“Laproscopic,” he says. “Only a week or less in ICU,” he adds, smiling. He thinks this will comfort us.
Before we drive south to our appointment for the surgery, my husband hires a photographer, and we are caught in various states of manufactured joy and hopeless sadness on the steps and beneath the arches of Mission Santa Barbara. In a few frames I look strained and frazzled. My husband is reserved, handsome, a diplomat on a winter holiday. For these photos he wears his black Sam Jackson cap with the peak in front, as is correct. I know he is thinking that nothing will be the same a few days hence. He is right. Nothing will ever be the same.
Most nights we huddle in bed in a fog of love and remembrance, our sailing trips, our certainty, our mastery of wind and sea. I try not to weep in front of him, and we talk and cling together, unable to sleep before the crimson dawn has begun to flood over the mountains to our east. Barely noticing, we slip our lines and drift onto the river of unknowing.The master surgeon arrives in the pre-op cubicle, summoned by my husband, who wants one last boon before the main event.
“You promise you will do this yourself and not hand it over to a resident?”
“All my work. No worries.”
“That happened to me once.”
“Not this time, Buddy.”
“Okay. Let’s go!”
The surgeon grabs my husband’s hand and gives it a hard shake. Then he turns away and charges through the drapes which surround the gurney. He is followed by a crowd of young acolytes waiting in the hallway, each with a note pad and a freshly starched lab coat.
I kiss my husband on the lips, and then the ear, and hope that my teasing will distract him from the terror on my face. I am doing unexpected things that will demonstrate what a good wife I am—obedient, willing, undemanding—all attributes usually in short supply. I am being good so I will not be punished. For Robert, fear of punishment is the least of it. He is the bravest man I will know.
“See you in a few hours, sweetheart,” he says.
And then he is gone with clanking intravenous drip lines dancing overhead.
There is more, beauty and horror both in about equal supply. When my husband is installed in ICU, his nurse is a tall, athletic man perhaps forty years old. A gift. A Marine infantryman in the first Gulf War and later a firefighter, this man has undergone a personal odyssey he never explains. He bathes and feeds my husband with sensitive hands as he shares bits of his former life. Shuffling about in his white clogs, he never mentions illness, drugs, feeding tubes, catheters, oxygen pumps, drains. It’s all about his life in another century, his war, his fires. In this well-provisioned, state-of-the-art intensive care unit, the point of the spear is this incredible nurse with his pale-blue eyes and muscled arms. He has confronted the unknowable and is at peace. We are out of ICU a day early.
On the surgical ward we are not so fortunate. One Galahad in a life is all that can be expected. Each blood draw is an adventure, each change of protocol unexplained. After an endless week we are discharged to the hotel across from the hospital to wait out ten days before we may return home. Our surgeon wants us nearby in case the whole thing leaks. Fortunately we hadn’t thought of that.
The day he is discharged, my husband is ecstatic while I am gray with apprehension. From this moment I will be the party who calls for help in the event of some unexpected calamity. I am ready but unwilling. At the hospital pharmacy we are to collect several prescriptions to take along with us. The pharmacy access consists of an atomic-bomb-proof stone wall with a small window covered in bulletproof glass. There is a slot in the glass which allows the patient to place an ID card or a credit card in a tray which slides between patient and pharmacy clerk. This day the clerk is a petite brunette, officious and important.
“Sorry, sir. This prescription is not covered by your insurance.” She reports this result through a microphone inserted in the bulletproof glass. It makes her voice sound like R2-D2.
“I’m afraid that’s wrong,” my husband says through the mike.
The pretty clerk lifts her shoulders to indicate that this is a final determination.
“Get the insurance company on the line. I’ll talk to them.” The clerk makes the connection, sighing and rolling her pretty eyes. She passes the telephone receiver through the slot. For the next several minutes, a phone line snakes through the opening in the bulletproof glass out into the hallway and into the receiver at my husband’s ear. From his wheelchair he argues with the insurance company and I suppress hysterics. My husband is bundled up in a hospital blanket, his white nightcap on his head, mano a mano with the great insurance provider in the sky. His gestures are firm, his voice a deeper baritone than usual. Finally he is through and passes the phone back to the young clerk.
“It’s fixed,” he says.
Minutes later we are on our way, all prescriptions in a neatly wrapped paper sack.
“What happened?” I ask.
“It’s too complicated,” he says. I believe him. The world of illness improves one’s tolerance for ambiguity.
In our hotel room we meet a person who instructs us in the art and craft of feeding machines. She is a large woman wearing a large down jacket amid a large cloud of vanilla-scented perfume. When I look at her, I can’t stop thinking of donuts. She is sweet but not articulate, and my husband must reprogram the machine after she leaves. He probably would have done that in any event, since he has never met a digital gadget he didn’t immediately reprogram.
Two years post surgery, he is still alive. There is radiation and then chemotherapy which he cannot endure, his poor body covered with inflamed and weeping blisters. The feeding tube in his side, when removed, will not heal for a whole year. It spits stitches, leaks, granulates, ruins shirts, and finally surrenders and closes. There is a further surgery. He loses seventy pounds.
In November 2012 we were in Italy, a hotel on the Bay of Salerno. The slanting light was similar to the sun in our California garden. A bath of milky luminescence picked out the fishing boats in the harbor below and bounced off mild waves that lazed in from the southeast. He did not eat much but seemed satisfied. There was no real trouble.
Then, at home for Christmas dinner, it all went wrong. He tried to keep up, as if he was not missing major parts of his insides, but it was no use. Finally he left the table and returned ashen and, I’ll say it, chastened, as if his effort to join the joy of a lavish feast had been a presumption, a finger to the gods.
From that day until the end, nothing went down his throat without protest. In the last weeks he took no food, and when the technocrat doctors informed him that his stomach and intestines would not tolerate a feeding tube, he knew. His fluid levels touched the entrance to his lungs.
January 2013. The waiting room was packed, although my husband elicited a measure of respect from the triage nurse when he described his medical history and produced a typed-up copy of his drug regimen. He represented, I supposed, a more interesting case than those of the moaning children with fevers and drooling noses, the drunken woman ordered into a wheelchair, the young man with the wild eyes pacing in a small circle next to the constantly swishing automatic doors.
“When did this start?”
“From the beginning?”
“Say, in the last months.”
“At Christmas dinner. I threw it all up. A big projectile-type vomiting.”
The nurse wrote a few notes. “And then.”
“Well, at about eight o’clock tonight I had this really sharp pain. On my side, about waist high.”
“Nothing between Christmas and last night? It’s almost three weeks in between.”
“Oh, I couldn’t eat much, occasional reflux.”
“So the pain. Give it a number, one to ten, one…”
“This was a ten.”
Her badge identified her as Annamarie. She rolled a digital thermometer across his bald pate. Then more writing. “Okay. Take a seat in the waiting room, and we’ll get you in as soon as possible.”
“Annamarie, how long do you…”
He thought the personal approach, the use of a given name, would speed things up. She had dark-brown hair clipped in a roll to the back of her head. Streaks of bright burgundy trailed from the distracted bun that would not be constrained, a psychedelic remnant for a woman who had overcome her flower child. She had trouble with her weight, her uniform a size too small.
“There’s a lot of people sick out there. We’ll get you in as soon as possible.”
I read that today there is flooding in Austria again. We drove from Prague once, years ago, skipping Vienna to dally in those places on the map where the deepest green indicated height. It rained hard, a series of relentless dumps that startled the placid alpine valleys with their glut of summer. Geraniums and bluebells sagged, their saturated flower heads sinking into the muddy woodland. At Steyr the river crept up and over the Stadplatz, and the little alleys that led to charming shops and bistros sloshed in the current of the River Enns. On higher ground we bought salami and an old Gruyere, a loaf of brown bread, two skinny French pears. As we pulled into the parking lot outside of the city, just below the dam that held back what would have drowned the whole valley, we ate our lunch, daring the rain god to do his work. We did not know that other one, the fear god. We did not know that the dare would be taken up onetime.
How to think about it now, those winter days of slanting sun on the early morning garden. No need to draw the curtains, that sun was toothless. We still started each day waking in the toasty bed. Your nightcap was a new one, dark green, ready for Jack London weather; your old terry robe was also green. Worn to the nub, I relined the sleeves with broadcloth cotton in a similar color. The last reports showed that the little devils had gotten out, were everywhere inside you.
You chose the morphia exit, the sleep cure at the end of a needle permanently implanted in your upper arm, a direct shot to the vena cava. At first it was your tether to life, your food line, but it became your link to brother death. Eros and Thanatos playing out their game. When you went it was because you drowned in your own fluids, although they called it respiratory failure.
It is now four months, and I know you will not come home. We buried your ashes on a pretty hill overlooking the sea, porpoises rising in the nearby surf below the cliffs. You must have laughed at us burying you inside your little bronze box, lowered by two very serious grave diggers. We did the final deed ourselves, took turns with the shovel, and threw the sandy earth into the hole, tamped it down, and returned the sods so that it looked like a nice, neat lawn. The grave diggers were confused. Yes, I am certain you laughed at us from your perch in that great Douglas fir over by the older, more expensive graves.