Infusion

January 9, 2023

It’s always something.

The doctor entered the office and strode over to a whiteboard mounted on the wall. He picked up a green highlighter and scrawled “Keytruda” in bold letters.

“It’s an immunotherapy drug,” he said. “It acts to reinforce your immune system. You’ll get it through an IV, one infusion every three weeks for a year, with a CT every three months.  If it goes well, we could stretch the infusions to every six weeks.” He added, “If it’s not effective, there’s surgery.

‘Ninety percent of patients tolerate it well, ten percent experience some side effects, like nausea, a rash, some other discomfort.”

Edwin Newman, for decades the wise dean of language at NBC News, in Strictly Speaking, his lighthearted book on writing and speaking English, poked fun at those of us befuddled by the surprises of life. “You know, you never know,” he cracked.

You know, you never know. No one not a doctor knows this stuff. Keytruda is the stage name for pembrolizumab. That’s right. We’ve seen the commercials on the evening news, when drug companies try to reach the senior set, the biggest demographic for network evening news. They run ads for treatments for all sorts of health problems. Who actually pays attention? I recall Keytruda only because it’s easier to pronounce than pembrolizumab.

The commercials flog the drug’s effectiveness, showing smiling couples walking hand-in-hand or feasting at backyard picnics. They also warn of side effects more extensive than those the doc mentioned, that could affect the liver, kidneys, skin, hormone glands—separately or together. These include shortness of breath, anemia, decreased appetite, dizziness or fainting, weight gain or weight loss, hair loss, various levels of pain. My favorite, from a Keytruda website, is “your voice gets deeper.”    

Every drug has side effects. The drug companies have to trot them all out to cover themselves. They don’t want lawsuits from people who experience unexpected serious side effects. Most cancer patients want to follow their doctor’s guidance. If he says Keytruda, they’ll go with Keytruda. And ninety percent sounds like pretty good odds.

Side effects aren’t incidental or minor. When you have them, they’re the main event, sometimes more agonizing, more excruciating, than the condition the patient is being treated for. Many cancers are asymptomatic in early stages. No pain. The guy or gal who gets diagnosed and treated early may suffer more from the treatment than from the disease.

I’ve had my side effects. There’s no predicting who’s going to get them and who isn’t. Generally, people in better physical condition do better than those who aren’t. People with certain allergies are more prone to certain side effects. No surprise. Yet people in good shape experience side effects, some with allergies do not. It’s a crapshoot. It’s healthcare.

Two weeks after seeing the doctor we returned to the Cancer Institute. We met with the treatment team, Holly, Crystal, Melissa, Ellen, Katie. Holly signed me up for a study run by the Cancer Center of the University of Rochester and National Cancer Institute. The study needed a 13-page questionnaire completed—right now! Crystal talked about insurance and took my credit card for the co-pay. Melissa delivered the Keytruda briefing—it’s great, you can take it forever, she said with a smile.

She gave me a six-page paper on the drug with two pages on side effects that more or less matched what I knew, divided into “more common” and “less common.” Some of the less-common ones I couldn’t pronounce.

 Nurse Navigator Ellen told us to call with questions about anything—there’s a 24-hour hotline.

Oncology nurse Katie took charge for the infusion. She led me into the treatment space, half the size of an NBA court. Patients sprawled in their La-Z-Boys, getting their immunotherapy or chemo drugs. Some chatted, some slept, others checked their cellphones or sifted through sheafs of hospital paperwork. The nurses were pushing IV racks about, giving instructions, hooking and unhooking folks.

She checked my wristband. “Your labs are back, the pharmacy is mixing your treatment,” she explained. Every patient gets blood work for every infusion. The lab does an analysis then gives the pharmacy the go-ahead. You get freshly made stuff every trip.

We talked a bit, she said she had family in Connecticut. “Litchfield, a cute little place. But my dad got a job with Michelin, so we moved here.” I told her I lived in Hartford for a while and had friends in Vernon. We could have gone on about all that. Everyone likes hometown talk. But she had to hook me up and see to other patients.

The Keytruda flowed easily. No sensation. I fell in with the program, as I had in January three years ago. The big chilly room, the IV racks, the patients, a mix of young and old, the staff hustling around doing their jobs, saving and prolonging our lives. Sandy sat near me, a nurse handed her a blanket. Patients came and went. A nurse wheeled a young boy past in a wheelchair, his mom following. She helped him into his La-Z-Boy. The mom took a chair and watched in silence.

I looked out the big windows at the pretty wooded grounds, then glanced around. The room was filled to capacity. Cancer was having its way in this town. My paperwork listed the sites of the cancer centers in eight cities around the state, all with treatment rooms like this one, all providing cancer therapies to sick people, some desperately ill.

This is the way it is. Things may turn out differently than you expect or hope. I recalled going years ago with our youngest daughter, Kathleen, on a church-group trip to help low-income folks fix up their homes. Her team got lost on their way to their worksite, their tools never arrived. They had to improvise to do the work. “If you have lemons, make lemonade,” she told the team. Good advice, I thought. May as well make lemonade.