Hell's Bells

Coming to you live, from the chemotherapy infusion center.

Illustration by Abner Clouseau

From the beige recliner where I’m sitting, I can see the brass bell. It’s about the size of a cantaloupe and mounted to the wall. Next to it is a patchwork quilt that’s been hung like a curtain. When you finish your entire chemo regimen—which can last anywhere from a couple of weeks to many months—you mark the occasion by ringing the bell and having your picture taken against the quilt. I witnessed one such ceremony from the vantage of this same beige recliner during my last infusion. An older woman and her adult sons had gathered with the members of the infusion center staff—nurses, admins. Everyone was hugging and chatting, with the familiarity of a group that had been through an ordeal together, which they had. The woman rang the bell.

It’s not quite time for me to ring the bell, but it will be soon. I’m on treatment five of six. Every three weeks since early May, I’ve sat in one of the beige recliners here in the infusion center and received the series of drugs that make up my chemo cocktail. The infusion center takes up the second floor of the four-story cancer center that’s been like my summer camp. In between treatments, I swing by for doctor checkups, blood draws, and various other types of chemo maintenance. Like a summer camp, this building is now home to many memories. Unlike a summer camp, most of them suck.

Actually that’s not true, or at least it’s more complicated. While it’s true there were times in this building that I felt close to death, it’s also true that the infusion center itself is a place of great warmth, compassion, and even joy. The nurses on the second floor are a tight-knit group. They spent a recent summer Saturday on a beach outing. Three of the women are going on a cruise together later this year, and two of the guys have plans to hike Machu Picchu. I’m not sure who, but someone, maybe everyone, regularly decorates and redecorates the floor. The current theme appears to be “summer.” There are leis hanging off each of the IV machines, and little paper pineapples and ice cream cones dangle from the ceiling, along with strands of Christmas lights. In my estimation, this crew is the most cheerful bunch of coworkers as any I’ve encountered, which is noteworthy when you consider that their job is administering toxic chemicals to cancer patients, a nontrivial percentage of whom will die from their disease.

As for the layout of the ward: Picture a long rectangular room with 14 recliners arrayed on opposite sides in two rows of seven. Each recliner is flanked by an IV machine, plus a chair for a loved one to ride shotgun. The rows of recliners face each other, which means most of the time, I’m seated directly across from someone just like me, someone who’s scared but pushing through the fear, who may or may not have lost their hair, who may or may not be knocked out cold from fatigue, who or may not fully comprehend exactly what’s happening to them, just as I didn’t early on, and still mostly don’t.

I do know I have a favorite chair. It’s down at the very end of the row on the far side of the room. I like it because it gives me a view of the whole ward and there’s enough space on both sides to raise the recliner’s tray table wings. Chemo’s kind of like air travel this way: It’s boring and you’re stuck there and every bit of extra space helps.

I’m usually one of the first patients to arrive on mornings when I receive treatment, because the regimen for my specific cancer happens to be one of the longer ones, taking up most of the day. For each treatment, I’m assigned a specific nurse, and today my nurse is Heidi, a veteran who’s been doing this work since 1994, which means she’s seen it evolve substantially.

Heidi starts me off with a series of pills, which include the steroid prednisone (more on this later), and then a double dose of Benadryl, which helps mitigate certain side effects and makes me drowsy as hell. To illustrate this point, I’ve attempted to write these lines in the immediate aftermath of the Benadryl drip. Trust me, that was hard. I’m going to take a break. 

It takes about 40 minutes to emerge from the Benadryl fog, and so by now additional patients have arrived for their treatments. Some are accompanied by spouses or siblings, others by an adult child, whose role, on top of the emotional support, is to translate feedback and instructions to and from English.

Some patients have IV lines in their arms, but others have what I have, which is commonly referred to as a “port,” short for “porta-catheter,” which is a device, implanted before I started chemo, that sits just below my right clavicle and is tapped directly into a vein connected to my heart. The port is what you plug the IV line into, like the jacks in The Matrix. Chemotherapy is very sci-fi. Sometimes I imagine the ward as being on a spaceship, and we’re all in our pods hooked up to these beeping machines, chemicals flowing into us as we hurtle through the cosmos. 

After the Benadryl, it’s time for rituximab, an immunotherapy agent that is typically administered over the course of two hours, in order to mitigate its side effects. Rituximab is new enough that Heidi remembers the days when she first started giving it to patients. As she explains, because the drug is so effective at blowing up tumors as soon as it’s administered (I always think of the video game Asteroids), it causes dead cancer cells to suddenly flood the body. In patients like me with “bulky disease,” which is industry jargon for “big-ass tumors,” the body’s response can be especially severe, and includes fevers that can go from normal to 105 in mere minutes. Doctors eventually figured out they could mitigate these effects with steroids like prednisone. Heidi told me that before the steroids came along, patients would convulse during this process, shaking their chemo chairs as exploded fragments of disease dispersed throughout their bodies. Rituximab and immunotherapy treatments like it are the future of cancer treatment, presaging a world without chemo. But, as Heidi is quick to point out, they’ll have their own set of side effects.

It’s actually kind of a slow day, only six of us patients on the ward so far, and it’s already 11:30 a.m. During most of my treatments, around this time, the place would be humming.

“Shhhh,” Heidi says when I point this out, hoping not to jinx it.

I have this expression: No matter where you go, there’s always someone wearing the wrong kind of shoes. Today, there’s someone a few chairs down from me who’s wearing brown dress loafers, which to me is a total mistake. My footwear of choice for chemo treatment is a pair of slides and warm socks. Shoes are inadvisable because who wants to konk out in shoes? (The guy wearing the loafers is konked out.)

My wife drops off my lunch with the security guard downstairs. She’s not allowed to go anywhere near the infusion center because she’s pregnant and the amount of toxic chemicals in this place is off the charts. Because I’m usually the only person on the ward who’s here for the entire day, I’m also usually the only one eating a full lunch. My lunch today is a sandwich from Jersey Mike’s. I get a bit self-conscious because it’s likely there are people around me whose sense of taste has been ruined by chemo and/or whose nausea has made them sensitive to strong food smells and/or whose mouth sores are so bad they can only “eat” Ensure—all symptoms I experienced early on in my treatments but which abated over time. More recently, chemo seems to make me hungry, and so I scarf the sandwich as quickly as possible before anyone can give me a dirty look.  

At around noon it’s time for the hard stuff: adriamycin. As mentioned previously, this drug is bright red, and protocol dictates that it be administered manually, as opposed to with an IV bag, with a syringe so big it looks like a Halloween prop. I ask Heidi—who has donned a special smock for this process—why that is. She chuckles and says, “Well I’ve got a story for you…”

As recounted by Heidi, the reason adriamycin is delivered manually is because several years ago, back when they used to administer it via IV bag, a patient reclined in her chair and the line connected to the port in her chest was dislodged just enough that instead of flowing into a vein, the chemical dispersed subcutaneously throughout her chest, turning her skin bright red—not because of the color of the medicine, but because it had started to dissolve her tissue. Emergency plastic surgery had to be scheduled to prevent the patient’s skin from sloughing off, which is what this medicine apparently does when placed in direct contact with dermis, hence Heidi’s smock. The surgery was a success, but since then the standard procedure has been to deliver adriamycin via syringe and under constant supervision.

Next up is my enemy vincristine, which comes in a small IV bag and takes only about 10 minutes to drip into me. Vincristine is my nemesis because it causes that bugaboo neuropathy, a relatively mild but persistently annoying side effect. While science has yet to figure out how to cure or reverse neuropathy, a common suggestion to help mitigate it is the wearing of specially made ice-cold mittens on the hands and feet, with the idea being that the cold prevents the chemical from making its way to those smaller nerve endings in your appendages. I bought some of these in advance of my third chemo dose. Since then, when it’s time to administer the vincristine, I put them on. They’re obviously cold and unpleasant and awkward, which is lame but manageable. The real bummer is that they just don’t seem to work. The neuropathy has persisted, no matter what kind of silly frozen feet-mittens I wear. 

By around 2 p.m., the ward is as full as it’ll end up getting that day, which isn’t that full at all. Some of us who are here seem like we’re in reasonably good shape—lucid, chatty, able to read or scroll or type—but others do not. Today, like a lot of days, I find myself sitting across from someone covered up to their chin in blankets, staring blankly off into the distance as the nurses communicate with whichever family member accompanied them that day. That’s how it was for me during my first treatment—I was so far gone I barely remember it. But each treatment has gotten a bit easier. 

Apparently, the origins of the bell go back to 1996, and can be traced to a naval officer, who started the tradition after finishing chemotherapy treatment for head and neck cancer. Since then, the bells have proliferated, showing up in chemo wards, radiation centers, and physical therapy offices. Cancer treatment tends to be multi-faceted, involving some combination of chemo, radiation, and surgery. You hope you’ll only have to run that gauntlet once, but unfortunately that’s not the case for everyone. 

According to a recent scan, the tumors in my abdomen are now so small as to be imperceptible, and the work that remains is rooting out the microscopic bits that may still linger. Here at treatment five, I’m able to type these words, eat sandwiches, and contemplate what the end of this part of the journey looks like. In three more weeks, my time on the second floor will reach its conclusion, and I’ll get to ring the bell. After that, I’ll start radiation treatment, which lasts a month in my case and takes place in the basement. They’ve got a bell down there as well.