My Christmas present to Elliot was a pair of plane tickets to Captiva, Florida, for Martin Luther King Day weekend. I wanted to celebrate making it through a half-year of treatment. But a few days before our flight, Elliot’s eyes turned yellow as a tiger’s and he got hit by debilitating waves of nausea. I begged him to let me take him to the ER. He was too miserable to get out of bed. He was just rolling on the sweat-drenched sheets, clutching his stomach, moaning. I threatened to call an ambulance to get him to move. He didn’t want all that drama so he finally relented and hobbled into the car.
I raced like a NASCAR driver into the city, zooming in and out of lanes and rolling down my window to wave cars out of my way. It was impossible to avoid the potholes. Every bump sent Elliot into a massive groan. He clutched a brown paper grocery bag I’d lined with white plastic. As soon as we got to the ER he retched into it with violent heaves.
“He has an obstruction,” a pretty young doctor concluded after some quick tests. A backup of bile had caused his jaundice. She was going to put a tube down his nose to get out the gunk that was stuck behind the blockage.
“Is this going to be horrible?” Elliot asked.
“Well, I won’t lie,” she replied. “It’s not going to be that comfortable. But it will only take a minute.”
A nurse whipped the beige curtain closed around his bed and asked me to step outside. I paced in the hall, my arms crossed hard. Then came the most agonized groan of them all, a guttural cry of shock. Dear God. Please let that be the last. My sweet man really doesn’t deserve such torture. A guilt pang hit too—I knew that if that primal roar had come from my child, I would wish it could be me in that bed instead. But it was coming from an adult, I felt lucky to be on the safe side of the curtain, and I was disgusted at my selfish impulse for self-protection. For all the times I resented the fact that Elliot couldn’t fathom my sadness—the pain of knowing that I would be left alone, forced to build a new life without him—here was a reminder that I couldn’t truly know his physical agonies and sense of dread.
Mercifully, Elliot felt better within minutes. He stayed in the hospital for five days, cracking jokes about what it said about his nose that he had a bigger nasal-gastric tube than anybody else on the unit. Those poor souls looked like depressed elephants as they plodded up and down the hallways with those long appendages hanging from bandaged nostrils. I wanted to remember how brave he’d been so I took a cell phone photo of Elliot. It’s the only shot he ever objected to.
He also had a new tube protruding from his side. It drained clear amber bile into a plastic bag strapped to his leg. It reminded me of the bag attached to the disabled soldier played by Jon Voigt in Coming Home. To my surprise, doctors said Elliot would be coming home with the ugly thing. And it would be my job to take care of it.
Oy. I am squeamish. Once when I was little I fainted when my puppy got a shot. Even now I cover my eyes when a scalpel flashes before a surgery scene in a hospital drama. I couldn’t bear to watch my son wiggle a loose tooth.
And yet I was forced to become an insta-nurse.
I had to learn to clean and dress this sore, alien wound under Elliot’s ribcage. It looked like a bullet hole, raw and pink and oozy. On the very day I thought I would be sifting through sand hunting for seashells with him on a romantic getaway, I was trembling in the face of this icky new responsibility.
Fortunately our favorite hospital nurse, Daniella, was dispatched to Elliot’s hospital room to teach me what to do. She was chatty and upbeat as she fussed with scissors and tape and foam pads.
“Think of it as an arts and crafts project,” Elliot told me cheerfully, just glad to be on our way home. “You’re really good at those.”
The wound wasn’t supposed to get wet so every time Elliot took a shower, I had to tape plastic all over his chest to keep out water. It was like the reverse of The Total Woman, that 1970s marriage manual that encouraged wives to greet their husbands at the front door after a long workday dressed in nothing but Saran Wrap. This getup wasn’t exactly sexy.
It is astonishing what you can get used to. Even joke about.
“The search for the perfect drainage bag goes on,” Elliot emailed me one day after he’d gone back to work, hiding his new accoutrement under his clothes. The only model in the pharmacy had six feet of tubing. “I don’t think I could fit that in my pants. I don’t think a defensive tackle for the Giants could fit that in his pants.”
Then came another shocker.
I had to pull a three-quarter-inch needle out of Elliot’s upper chest. The very idea made me sweat.
“It’s easy,” said the sunny nurse named Lorna. She had a big wide smile and an island lilt in her voice.
“I dunno,” I said warily. “I’m not good with needles.”
That bile obstruction had signaled the first combination of chemotherapies had stopped working; the new plan called for drugs that required my hands-on assistance at home disconnecting a chemo pump. I was trying not to panic—about this unnerving new nursing assignment as well as the tumor’s spread.
Dr. Kelsen was frank in reminding us that no drugs had great success against the aggressive growth of pancreatic cancer. “A handful of people respond well to certain therapies for a while,” he said, “and you might be one of the fortunate few.” It seemed he didn’t want to get our hopes up but he didn’t want to dash them either.
Focus on near term, I told myself. And there was one bright side: the new treatment required exhausting schleps to the city only twice a month, instead of three times.
The new pair of drugs had to be infused slowly, one teaspoon per hour over the course of two days. That meant Elliot had to come home from the clinic wearing the pump. It was about the size of a baby bottle and fit into a pouch that hung on his belt.
It was a clever invention. A thin tube from the bottle was attached to a needle inserted into that “port” implanted near Elliot’s collarbone. The writer Lorrie Moore aptly likened the device to Frankenstein’s bolt. The other end of the tube was connected to the bottle-sized pump holding a yellow balloon full of medicine. As the balloon shrank the drug was slowly squeezed into Elliot’s bloodstream.
One of the drugs was known as 5-FU. When the nurse announced it would be my job to detach the pump at home, my reaction was absolutely FU.
I wanted nothing to do with pulling a needle out of my husband.
“Okay, I’m going to let you practice,” Lorna said.
I thought she would give me an orange. I’d heard of nursing students pricking needles into their peels to get the hang of it. Instead Lorna emptied one of the green tissue boxes that appeared everywhere at Sloan-Kettering to dry tears. Lorna turned the box upside down and poked in the type of needle contraption that would soon be stuck through Elliot’s skin.
Lorna taped a bandage over the whole setup on the tissue box.
“Ok, first take off the tape, but be careful not to pull on the needle at the same time,” she said. No problem. That was easy.
“Then hold the base down here, pull up on these wings and slide the needle into the safety catch,” she said. I pulled. The needle slid right out. Fine. This didn’t seem so bad.
It was time to try it for real. As I put on rubber gloves, tore open an antiseptic pad and got a pungent whiff of alcohol, my face flushed and my stomach tingled, like I was about to take an exam I didn’t have enough time to study for. Think of all the little kids with Diabetes who managed their own insulin pricks, I told myself. Don’t be a baby. Just do it. You took driving lessons in the white-knuckled chaos of the meat-packing district in Manhattan. You can do this too.
So I read my cheat sheet yet again, unscrewed a plastic connection on the IV tube, wiped it clean and flushed the port with saline to get it ready for my big maneuver. I took a deep breath.
Lorna watched as I pulled timidly at the edges of the bandage. Elliot winced as I ripped away patches of his chest chair. He refused to shave there despite several nurses’ pleadings. His macho pride was at stake.
“It’s okay,” he said, grimacing. “Don’t mind me. Keep going.”
I held the base down and pulled the white wings together to slide them up the case. I tugged up gently. Hmmm. It wouldn’t move. Hmmm. I tried again, a little harder. It wouldn’t budge. Ok, harder still. Nope. Goddammit. This felt nothing like the tissue box. This thing just wouldn’t give. I was terrified I’d rip the whole catheter through Elliot’s skin in a bloody pulp. Or maybe I’d broken it.
“I can’t do this,” I blurted out in alarm. “I need help. I can’t do this. It’s stuck.”
“You’re fine, just pull,” Lorna said.
“I can’t, please. You have to. Please.”
She slid it out in one deft sweep.
“No problem,” she said. “You just need practice. You’ll be fine next time.”
“The box was so easy,” I whimpered. “This felt nothing like the box.”
“Don’t worry about it,” Elliot said as he leaned over to kiss my forehead. “You’ll get the hang of it.”
I stared at the grey linoleum floor, feeling like a failure. I could get into Yale but I couldn’t yank out a stupid little needle? If Elliot could endure nausea, pain and despair about our lives forging on without him, I should be able to conquer this small task.
My next chance came two weeks later. This time I knew the needle would resist. I grit my teeth, squeezed my fingers on those exasperating white wings and pulled hard. In nothing short of a miracle, the wings rose. The needle was out. The whole contraption came away from his chest, free and clear. A tiny dot of blood showed where it had been. I covered it proudly with a Band-Aid.
“What a pro,” Elliot said, beaming.
I think he liked having me fuss over him so tenderly, so eager to get it right and so afraid of hurting him. There was an intimacy there, a new mission and sense of purpose just between us. He watched me focus with an anxious brow on ministering to his body, only his, and a part of me was pleased to have him so dependent on me, only me. He couldn’t even take a shower without my help. (I drew the line at giving him shots; he had to master blood-thinner injections himself.) Elliot appreciated everything I was trying to do. He told me all the time. Good thing, too. If he had taken my efforts for granted, I would have been stratospherically resentful.
I yanked off my rubber gloves with a flourish and threw them in the trash.
“Every time I do this I want you to bring me flowers,” I announced. “That’s the deal.”
There were times over the next few months when we lay down to sleep and Elliot was connected to two long tubes, the chemo bottle and the bile bag. We didn’t want them on the bed so we put them on Alex’s red crate of Legos, which happened to be the right size to hold them at his side. We absorbed these unappetizing new attachments because we had no choice. We were just happy to be home together and developed enormous abilities to pretend they were not there. Sometimes blindness is a healthy choice.
And then, later in the spring, when that stupid bag was no longer needed, we had a little party for ourselves in bed. Elliot’s body was whole again, at least on the outside, smooth and lean, muscled and unfettered. Its simple integrity was beautiful to behold. We felt so free. There was nothing that might get tangled up if we rolled around. After a stint tied to these medical devices, you can truly appreciate the miracle of being unencumbered, left alone together, to savor your own bare skins.
Leslie detaches a chemo IV from a port near Elliot’s collarbone, summer 2007. Photo courtesy of The Record.