MEMOIR: Chapter 39 Bethesda

Chapter 39

Bethesda

February first, Tim and I were on a plane to WashingtonNational Airport. I made sure we got seats across the aisle from each other. Tim hummed to himself as he stowed his own carry-on in the overhead compartment. Once he was belted in and closed his eyes, I could relax my own vigilance for awhile. “Vigilance” took the form of constant background awareness of his state of mind, physical condition, and energy level. Vigilance was knowing when to offer him my arm, and when to let him limp along on his own. If I missed the cues he would let me know, like a little kid, “I can do it myself!” Which only heightened my vigilance, but at the same time, drove it underground.

Doctor Chapman had been right. Tim was so much better I began to wonder if the chemo had made him ill and lethargic, not the cancer. He needed naps but otherwise felt strong, with some of his fiery energy back. He could spar with me in the old familiar way, not too weak to give it right back if I teased or dug too far.

The schedule had been worked out with our various family members and with Doctor Chapman, who was in touch with the National Cancer Institute at the National Institutes of Health. There would be four treatments, four weeks apart. Wes would come with Tim for the February 28 treatment. Irene and the girls for the March 28 treatment, which would be at the end of a family vacation to Williamsburg and Civil War sites. Tim had been reading about the Civil War; he was fascinated. I’d be with him for this first treatment, and his last, in late April.

Tim scribbled in his journal after takeoff. He flipped it shut, closed his eyes, and tapped out trumpet fingering rhythms on the journal’s black nubby cover for awhile, then opened it and scribbled some more. I got up to find the rest room and glanced down at what he was writing. It looked like bird scratches, Peanuts’ Woodstock-talk, exclamation points and punctuation marks interspersed with musical notes on a rough five-line music staff. I flashed back to when Tim’s children were small and he had written me a note about the garden they had planted together. It was late August. He had PS’d a drawing in green colored pencil of the watermelon they had harvested. It was the size of a dime, with curved vertical markings. Under it he had bird-scratched actual size.

When I came back he appeared to be asleep. My watchful vigilance receded enough to let me close my eyes for half an hour.

I drew a Reiki symbol with my tongue on the roof of my mouth.

Energy of the mind, be still and peaceful.

Washington National, an odd combination of Mt. Vernon Colonial and modernity, was an anthill of activity—15 or 16 million people a year passed through this terminal, and we must have jockeyed our luggage through half a million of them, everyone in a hurry. Bureaucrats in suits, harried Congressional aides, Really Important Personages with an entire entourage scurrying to keep up, people in wheelchairs—going to Bethesda, maybe, like us?—and tired, whiny children dragging on their mothers’ skirts. The terminal felt grimy, worn, and old. Construction was under way for a new terminal to open in a year or so, which meant there were makeshift detours to the baggage claim and exits to taxis and the shuttle to Bethesda.

By the time we had checked into a Holiday Inn near the National Institutes of Health, we were ready to go straight to our rooms for a nap, agreeing to meet for a late dinner. Our rooms were standard Holiday Inn: one queen-size bed with four poufy pillows, a small desk/table with a phone and desk chair, and one slightly more comfortable chair. A large print of the Washington Mall hanging above the bed. A little seedy, but clean.

That first night we had dinner in the coffee shop. Same familiar drab tired ambience as the room. Neither of us felt hungry. I had a hard lump in the pit of my stomach, and couldn’t quite pin down what it was about.

“Tim, how are you feeling about tomorrow? The treatments?” I asked over our BLT’s.

He gave me a fierce look. “I’m here, aren’t I? I’m doing this. Whatever it takes.”

“So you think the experimental treatments might…”

“No, I don’t think they’ll cure me, though they could. But even if they don’t, the information the National Institutes of Health will get from me going through this will help someone else with melanoma, down the road.” He took a huge bite of his sandwich, chewed and swallowed. “And that’s good enough for me.”

I put my sandwich back on my plate and drank my lukewarm coffee. The lump in my stomach was beginning to hurt. I was participating in delivering my brother into a maw of lab-rat experimentation, even helping and supporting him, and I had to start feeling hopeful and resolved about it. Somehow.

Tim’s first appointment at the NIH was with the research assistant for the study, Lydia Holloway, a cheerful, energetic young woman with a cyclist’s strong calves, her brown hair pulled back in a tight ponytail. I liked her. Tim liked her. She inquired about our trip, our accommodations, and assured us that the experimental treatment would probably not make him sick.

“How many treatments this time?” I asked.

“Three identical treatments,” she explained. “One each day for three consecutive days. He needs to be here by ten a.m. each day.”

Lydia looked at her checklist. “Scans?”

Tim pulled out his MRI and CT scans and X-rays and handed them over.

“Did you bring the durable power of attorney?” She glanced at me. “For your sister?”

She meant the power of attorney giving me the right to make any and all medical decisions on his behalf.

Tim found the six-page form in his backpack and handed it to her.

“Why do you need this?” he said.

“Oh, it’s just a precaution,” she told him. “It’s very seldom needed.”

Tim glanced at me with the familiar, sardonic smile on one side of his mouth, and said out loud what I was thinking.

“Right.”

 

Eleven o’clock found Tim settled in a high bed on a busy ward. They let him keep his clothes on. His nurse, Chloe, was a plump middle-aged blonde with a comforting air of competence. She brought him water and a video list. He looked bewildered, unfamiliar with anything on the list, and handed it to me.

I looked it over. “Stir Crazy,” I said. “Richard Pryor and Gene Wilder. That will keep you laughing, it’s good for your immune system. Norman Cousins says so.”

“Didn’t he just die?”

“Well, yeah, but not from that blood disease he wrote about. He got well from that. He died of a heart attack. His heart had been bad for many years, so you’ve gotta think he must have laughed a lot to stay alive with a bad heart.”

Chloe tied a rubber tube around Tim’s upper arm and slid a needle into the crook of his arm. Tim kept his eyes on me. “Isn’t he the dude who wrote so much about the Vietnam War?”

Chloe connected the needle to a clear plastic tube that led to what looked like a washing machine, except with more dials. The lump in my stomach twisted with anxiety.

Had to keep this conversation moving, we both needed distraction from what was happening with his arms.

“He was against all war, not just the Vietnam War. An amazing man,” I said.

The nurse moved to the other side of the bed and inserted a needle in his other arm. Hooked the needle up to a tube locked into a smaller washing machine. Tim twisted around to see the machine. Chloe laid a gentle hand on his arm. “Best not to move around too much. Just try to relax.”

One corner of Tim’s mouth turned up in the half-smile. “Relax. Right.” He leaned back and took a deep breath, let his shoulders drop.

“What’s the machinery for?” I said.

“It’s for apheresis,” she said. “The big machine separates the blood components and removes the white cells. The white cells are mixed with donor white cells and then put back into his blood.”

“Donor white cells?” I asked Chloe.

She looked busy, taping the needle down. “From other melanoma patients.”

“You mean—little pieces of their melanoma are going into Tim’s blood?”

She didn’t look up. Busy smoothing the tape. “Well, yes, I guess you could put it that way. To see if the alien cells could boost his immune response.”

Tim looked down at the needle. “Do I get my blood back, or do you guys just keep it?”

Chloe showed her dimples. “No, you get it back. It’s returned through the needle in your other arm.”

He looked dubious. “Lydia said this wouldn’t make me sick. What do you think?”

“Probably not. Most patients tolerate the treatment well. Just be sure you get plenty of rest, at least this first time while your body adjusts.”

I sat by his bed and watched the movie with him while the machines hummed and blood moved steadily out one side and back in the other. By the time the movie ended his entire blood supply had been siphoned out and replaced with a cocktail of alien melanoma cells.

Watching his blood run through clear plastic tubes while he drank water through a straw and hooted at Pryor and Wilder, I suppressed a desire to exercise my durable power of attorney, yank the needles out of his arms and take him home. But it was too late to yank out the tubes and save him. He already had other peoples’ melanoma cells circulating through his blood. Like he didn’t already have enough of his own, he had to get a bunch more.

After a couple of hours, Chloe began removing needles and taping neon-colored Band-aids over the infusion sites. Another nurse brought Tim a large glass of orange juice and cranked up his bed to a higher sitting position.

“Just sit there awhile, Tim,” Chloe said. “How do you feel?”

Tim chugged half the orange juice and smacked his lips. “Like a million bucks.” He grinned his devil grin.

Chloe lifted one eyebrow, and checked his vitals. “Well, it does look like all systems are go.” She pushed away her equipment stand. “Still, give it an hour or so before you jump up.”

“I’ll give it half an hour,” Tim said. “Or twenty minutes. Got anything to eat?”

Chloe winked at me. “Anything you want.”

“Krispy Kreme doughnuts? We don’t have Krispy Kremes in Portland yet,” he said, “but I know they’ve got to be around here somewhere. Unless President Clinton has a private White House source.”

Chloe grinned. “I was thinking more along the lines of…something healthy. A salad? Sandwich? We can get you that.”

“Okay, then, a ham sandwich,” he said. “And one for my sister, too. She’s earned it.”

“Coming right up.” Chloe went to the nurse’s station and picked up the phone. Two ham sandwiches with potato chips and sides of dill pickles materialized within minutes.

The way Tim devoured the food, he clearly wasn’t experiencing nausea. As soon as he finished eating, he swung his legs off the bed and jumped to the floor. Chloe fast-walked over. “You’re sure you’re okay to walk…?”

He did a hop, skip and a jump for her. “Walk, run, whatever. See you tomorrow, same time same place.”

He put on his jacket and turned to me. “Let’s walk back to the hotel. It’s only about half a mile or so.”

We walked through a grassy park planted randomly with cherry trees. It was February cold, but the bright unfiltered sun made it seem warmer. The trees had just the merest reddish buds on bare twig branches.

Tim put his hand on my arm. “Wait, Judy, I need to rest a minute.”

He took off his backpack, unzipped it and took out a sweatshirt, spread it on the grass beneath a cherry tree. We sat down, leaned back against the trunk and looked up. He pulled on a low-hanging branch and squeezed a tiny bud between two fingers.

“These will be starting to bloom when we come with the kids in early April,” he said. “Can’t tell if they’ll be white or pink. Probably pale pink with a deep pink center. Most of the trees around Washington are Yoshino cherries, white blossoms. They change from pink to white as they mature.”

He let the branch snap back. “Not many trees here in Bethesda, though. In April, the best place to see the Yoshinos is around the TidalBasin in D.C. By the Washington Monument.”

The pale bark of our tree was marked with spots arranged in lines around the trunk. I reached up and idly pulled a small piece of loose bark. It peeled like a strip of sunburned skin. Tim watched for a moment.

“Don’t, Judy,” he said, “leave it alone. That will peel all the way down and around the trunk and kill the tree.”

I stopped. “It will?” I asked. “How do you know such things? Your major was music, not horticulture.”

“You forget I helped Dad with the orchard,” he said. “He showed me about fruit trees. Cherry bark, most of it peels like that. The Indians used the bark to make baskets.”

This was something I hadn’t known, Dad teaching Tim about trees.

“Okay, how did he know about such things? Where did he learn it?”

Tim opened his backpack and pulled out a knit hat and a pair of gray wool gloves. He put the gloves on slowly and smoothed the fingers on tight; pulled the hat down over his ears.

“There wasn’t anything Dad didn’t know about growing things. He may not have had much formal school, but he was a fast learner. He learned from everybody, asked questions and watched, just picked it up, trial and error. Maybe you had to be that way to be a farmer.”

He zipped his jacket up to his chin. “Wish he’d lived longer, so he could teach me more of what he knew. Seems like he just got started.”

I shivered. “He managed to teach you and Wes more of the farming stuff than he did me and Jen, though,” I said. “You spent more time working with him, helping him, doing chores. Especially after he retired.”

“Well, you had to be there to learn it, he didn’t force it on anyone.”

I felt a little flare of resentment. “Especially not us girls. He didn’t even think we should go to college. Only boys should learn about farming things, and go to college. Waste of time if you were a girl, in his opinion.”

Tim grinned. “Ha. Do I sense a bit of…jealousy? Anger?”

“Whatever,” I said. “You know it wasn’t fair.”

“You certainly didn’t let that hold you back one bit, you found your own way to go to college, and I never noticed you being particularly fascinated with stoop labor and plant cultivation anyway.”

“Okay, you’re right, I never enjoyed the grubbing around in the mud part. But there was a difference. Jen and I were stoop labor. You were an apprentice. You and Wes.”

“Fair enough,” Tim shrugged. “Things were different then, the Fifties, farming, male privilege.”

He wiggled into a more comfortable position against the tree and his eyes drifted shut. Before long he was asleep. I watched him for awhile, and noticed the blue bruises of sleeplessness beneath his eyes. He was probably having another of his attacks of insomnia Irene had told me about, ever since Dad died.

The air cooled and Tim woke up. He rubbed his arms and shivered.

“Brrr. What happened to the sunny day?”

“You slept through it,” I said. “But hey, looks like you needed it.”

“Guess I did,” he said. He was pale, the dark circles under his eyes pronounced.

“Tim, you’re not sleeping,” I said. “What’s up? Dad, again?”

He glanced at me. “What makes you think it’s about Dad?”

“No big intuitive breakthrough,” I said. “It started when Dad died. I figured your insomnia might be related to that. Feel like talking about it?”

He tucked his gloved hands into his armpits and ducked his head.

“No.”

“You’ve never talked about it since that day, Tim. Maybe it’s time you did. Maybe you’d sleep better.”

He didn’t answer. Instead, he stood up and slung his backpack over one shoulder. “Getting really cold now. Let’s go. Gotta keep moving.”

He looked up into the bare branches of the cherry tree. “Those buds will be in full bloom before my last treatment.”

“So we’ll get to see the cherry blossoms in full bloom?” I said.

Tim turned his head to look at me. “You saying maybe we won’t?”

“Well, that’s three months from now…I’d love to plan ahead that far.”

He pushed his granny glasses down on his nose, the better to let his eyes burn into me.

I’m planning ahead that far. And you’re coming with me, so you’d better be planning ahead that far.”

“I hear you,” I said, with a big smile. “We’ll see the cherry blossoms. Together.”

We set off walking through the bare-limbed cherry trees. “I hear they’re spectacular,” I said.

The tight little bud that was Tim, closed up against the cold bitter weather but full of every possibility, would be in full glorious bloom by late April. I would expect it, count on it, trust it, believe.

Naps first, then dinner. We asked for recommendations at the desk, and ended up in a Greek restaurant a few blocks from the hotel. The table linens were thick and white, the waiter was Greek, and the food delicious. Tim ordered grilled octopus and ouzo—“You only live once!”

I stuck with moussaka. He wrinkled his nose at my eggplant, I sneered at his octopus.

“Tim, do you really believe we only live once?”

“You talking about reincarnation?”

“Well, the Bible says ‘Ye must be born again’,” I said. “I always wondered if that might mean we get to have more than one life.”

Tim sawed off a piece of grilled octopus and chewed for awhile. He took a sip of ouzo, made a face, and pushed the glass away.

“You don’t think one life is enough?” he said.

“Sometimes I think it’s more than enough, sometimes not enough,” I said. “The idea of doing junior high again puts me off a bit.”

“Mom believes we have many lives,” he said. “Dad believed being born again meant a spiritual rebirth.”

“What do you believe, though?” I said. I took a sip of his ouzo, made a face and pushed the glass away. Tasted like kerosene.

“I’ll tell you, Judy, it’s a tempting thing to believe. In that system, this melanoma could be a lesson about my bad karma from a previous life. Which means my next life ought to be pretty good.” He finished off his roasted potatoes with lemon and herbs and wiped his mouth with the white napkin. “But I’m more inclined to believe karma is all in the same lifetime. Just consequences of choices we make.”

“Consequences?” I said. “How could you possibly have made any choices that required such an awful consequence? That sounds like Dad’s religion, ‘sin requires punishment’ kind of thing.”

With his thumb, he absently stroked the empty place where his finger used to be. “Oh, I’ve made my share of…mistakes.”

He turned his spoon in slow circles on the white tablecloth.

“Sin. Mistakes. Seems like they all get punished the same. The worst punishment is the guilt.”

Rage boiled up inside me. Bible verses learned in that wretched church flipped through my mind like Rolodex cards. The wages of sin is death. Death passed upon all men, for all have sinned.

“Punishment? What’s that about?” I said. “You have nothing to feel guilty about, that kind of guilt has got to be bogus. It’s the kind of guilt religion imposes on everyone, the guilt of Adam and Eve’s sins.”

“I know it doesn’t make rational sense,” he said. He stroked the missing-finger space again. “I know it’s all bullshit, but I sure feel guilty a lot of the time. When I can’t sleep, that’s what it’s about. Guilty, guilty, guilty.”

“Tim, you’ve got to get over that. You’ve got to talk about it.”

“I talked to Peggy about it.”

“You did? What did she think?”

He grinned his devil grin. “Confidential,” he said. “Between me and my therapist.”

The little twerp. Playing games again. He had to bring it up about Peggy, dangle it in front of me, then yank it away. When we were kids I could usually have the upper hand, but our roles switched when we played a game. Any game, from checkers to chess to those he made up himself. He always won.

“Fine. Don’t tell me,” I said. “I don’t want to know anyway, just trying to act interested.”

“You jealous of Peggy?”

“Well, she’s my friend, she’d tell me what you talked about! I have a right to know! I recommended her to you!” Right away, I knew my reaction was childish. Playground back-and-forth.

“Boloney, she’s my therapist.”He grinned. “I only need to tell you what I want to. Sorry, but she understands confidentiality. She’d never tell you a thing. She’s a professional. Your friend, yes, but she doesn’t blab about her clients. To anyone.”

I felt the heat rise in my face, and looked down at my empty plate. “I know, I do know that about her. I know I’m not being rational either. So that makes two of us.”

We sat slumped in our chairs and steamed for a bit, calming down, lowering the temperature. The way we did.

Tim gave a deep sigh and sat up straight. He waved the waiter over. “Want to share a piece of that coconut cake?”

The snowy white cake did look delicious.

I sat up, too, and straightened my shoulders.

“Sure. And I’ll have some coffee. Decaf.”

Walking back to the hotel, Tim brought up our earlier conversation.

“That guilt thing?” he said.

“Yeah,” I said. I didn’t look at him. Better I should try to keep my big mouth shut. Just shut up and listen.

“Peggy thinks it’s about Dad.”

Duh, I thought. “Sounds like a therapist. Everything’s about Mom and Dad.”

“Yeah,” he said.

We walked another block.

“It’s about how he died. The car wreck.”

“Why would the car wreck make you feel guilty? He was driving when he blacked out and hit that telephone pole, he knew he had something wrong with his heart, you were just along for the ride.”

 “My head knows, I guess,” he said. “This may sound stupid, but I feel responsible for what happened. And guilty for …”

“For what, for God’s sake! Tell me.”

So much for shut up and listen.

Tim took a deep breath. “For my part in  it.”

“Tim, I’m really pissed off that you took on anything about that accident,” I said. “It was never your fault, never.”

We walked another block in silence. Rather, I stomped, he walked.

“What do you see as your ‘part’ in Dad’s death?” I asked.

He gave me a sideways glance. “I pay somebody to talk about that stuff.”

Peggy again. Shit. “So you’re not going to tell me?”

“I can’t talk about it. To tell the truth, I was just yanking your chain. Haven’t told Peggy about it, either.”

“Well, good. Then you can just tell me.

“I said, I’m not ready to talk about it! To anyone! So quit digging!”

My skin crackled with frustration. “So you’ve got this big issue about Dad, and you haven’t even talked about it yet. That’s dumb!”

You should talk,” he said. “What about you and Mom?

He had me there. “Okay, so maybe I’ll see Peggy sometime about that. But we’re talking about you right now. Why even have a therapist if you don’t tell her the important stuff?”

“Not ready to talk about it yet,” he said. “Am I hearing an echo here?”

“Okay, I hear you. I’ll drop the subject. We were getting nowhere, anyway.”

“Guilt sucks, doesn’t it,” Tim said. “I know it, at least my head knows it. Wish the rest of me knew it, too.”

“It’s the most useless emotion I can think of,” I said. “Guilt is definitely Adam’s curse, if there is such a thing.”

He paused, lined up his shot, and kicked a stone off the sidewalk. It hit the trunk of a cherry tree dead center. For a moment he looked like little Timmy, innocent, even playful.

“Okay, time to get over it, I guess,” he said. “Guilt is long! Life is short!”

I put my arm around his shoulders.

“Just wish I knew how to get over it,” he said.

“So do I,” I said.

We finished the walk in silence.

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2 Comments

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2 responses to “MEMOIR: Chapter 39 Bethesda

  1. Michael Edwsrds

    I feel like that sometimes too – guilty for past decisions that I cant change now. Jack would say to not think backwards.

  2. Judith E. Allen

    Indeed he would. And he’s right.

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