About Chemotherapy (part3)- Facing the devil

Epirubicin (EC)

The infamous “red devil” was the main character in my first four chemo cycles. As I’ve already mentioned, it stands out with its horrifying nature even within the already unpopular chemo lineup.

For me, the pre-medication phase with EC was completely uneventful and free of discomfort—although, to be fair, I was suffering so much from the cold cap at that point that something truly significant would have had to happen for me to even notice.

When the pre-meds had finished, the devil himself made his entrance.

With its bright red color, the drug always felt unsettling—almost as if it were screaming in your face: “I’m vicious, stay away!”

During my online rabbit-hole phase, I had read countless stories about people’s first encounters with chemo—everything from desperate sobbing, panic attacks, and angry outbursts, to almost religious imagery of surrender and salvation. So naturally, I expected something equally dramatic from myself.

Maybe because I was so prepared for that, the reality felt almost… anticlimactic. I felt nothing.

Well—nothing except for the slightly suspicious, uneasy glances I kept throwing at the liquid, knowing full well we would have our conflicts later on.

The infusions themselves lasted about an hour in total. The only lasting memory from that time—aside from the cold cap ordeal—was the shivering.

The chemo room was always freezing. I’m not entirely sure why, but I assume infection control had something to do with it. Alongside my own fluffy electric blanket, the nurses would often bring me one or two heated pillows, which I piled around myself while constantly sipping herbal tea—basically every time I dared to bother them.

My usual “I don’t like to inconvenience anyone” attitude was often overridden here by a much stronger “I genuinely might freeze to death” survival instinct.

Honestly, cancer is excellent practice in developing a bit of selfishness for those of us who are used to putting everyone else first. With all the chaos, sometimes something just snaps, and those deeply ingrained self-sacrificing habits take a back seat.

That said, none of these thoughts were inspired by the nurses—they were the most patient people in the world every single time. The way they lifted the mood without a trace of pity or condescension… they honestly deserve sainthood.

Sitting still for three hours sounds boring, but it was actually exhausting. The lights, the people, the machines, the constant changes, the cold…

I envied the people around me—mostly older patients—who managed to fall asleep. For me, with the cold cap and lifelong insomnia, that remained a distant fantasy.

There were no patients around my age, so I felt this strange duality: on one hand young and full of life, and on the other deeply unlucky—as if I had somehow already won the lottery for a killer disease.

When I finished my first epirubicin and happily stood up from the chair, the first surprise arrived: I got so dizzy that I practically collapsed straight back into the seat. And once I made it to the bathroom, my stomach decided to throw a full tantrum as well.

(Epirubicin also turns your urine a vivid red—just in case you might forget it’s there, it makes sure to remind you.)

Because of my immediate digestive adventures, I decided from the second chemo onward to try 24-hour fasting. It wasn’t something recommended by my oncologist, but in my case there wasn’t any real resistance to it either. Since it solved the problem, I didn’t experience any downsides, and I also came across some promising research on the topic, I stuck with it for the remaining 12 sessions.

The end of the day

The half-day adventure ended with removing the port access needle and taking off the cold cap. While the first only came with a slight stinging sensation, removing the cold cap—although without a doubt the best part (bliss & salvation)—was just as much of a struggle as the whole experience itself.

At first, it couldn’t even be removed immediately, because it had practically frozen onto my head. And once it finally came off, you find yourself trying to warm up with a towel while picking little ice chunks out of your hair in mild amazement… that you actually survived this too.

This is where the head covering I had panic-ordered at the beginning came in handy. It helped a bit with not feeling like an ice queen (or rather a less glamourous snowman) when stepping out into the street.

Right after EC, I wouldn’t have felt comfortable going for a long walk alone—it gave me the sensation of being slightly drunk and disoriented.


After-effects of EC

One of the main side effects of EC is the classic nausea everyone associates with chemotherapy. To avoid this, you go home with a whole arsenal of medication—various anti-nausea drugs and steroids.

This one today, then for two more days two of those, three times one of another… honestly, who can keep track of this? I was ambitious, but in the chemo fog I definitely made mistakes here and there. I mean seriously—who can follow something like that with a bunch of new medications, even in a normal state? And with chemo, “normal state” is rarely part of the equation.

Anyway. I more or less managed it—and I’m still alive!

The first and second days after EC were surprisingly okay. I even managed to keep up my goal of 10,000 steps a day, more or less.

The crash hit with every EC cycle around days 3–4 after treatment, with symptoms very similar to the onset of the flu: muscle pain, exhaustion, and that heavy, drained feeling.

After the first cycle, I also went through a pretty intense steroid crash, complete with the full emotional rollercoaster package one can imagine. It hit me hard enough that I started negotiating the steroid dose down with my oncologist—firmly sticking to my principle of “I refuse to suffer more than absolutely necessary, even if I drive everyone crazy.”

The steroids also caused facial flushing and a burning sensation, which improved once the dose was reduced.

Steroids, by the way, are also there to help prevent nausea and reduce swelling. While I couldn’t really influence the latter, I managed to avoid nausea mostly with the other medications. I didn’t vomit once.

What did become an almost constant issue, however, was mouth sores—painful ones. For that, I used a combination of saline solution, baking soda rinses, and the so-called “magic mouthwash” provided by oncology, which at least gave temporary relief.

This problem came back after every EC cycle, and just as it started to improve… it was time for the next one. Delightful, really.

My oral mucosa is still sensitive to this day—one of EC’s longer-term gifts to me.

Catching any kind of illness during chemotherapy is risky due to the suppressed immune system, and I was given a little booklet listing when to call oncology immediately.

During EC, I had cold/flu-like symptoms once, which resolved quickly. Apart from having to do a COVID test, managing it wasn’t really different from normal.

I also managed to collect a bit of anemia along the way, but in this situation it was considered acceptable—I was even almost praised for it: “this isn’t bad at all at this point.”
Wonderful.

Despite all this, I think overall I handled facing the devil itself quite well. I stayed physically active throughout—doing yoga, walking, going to art classes. I tried to maintain some sense of normality.

I did lose quite a lot of hair, but that was something I had mentally prepared for as much as possible. I had already “cried it out in advance,” so by the time it actually happened, there were no tears left to shed.

People might have thought otherwise, though—with my nose constantly running. The loss of nose hair, combined with medication side effects, made sure of that. It often looked like I was quietly crying in public, when in reality it was just another unglamorous chemo side effect making itself known.

Losing my sideburns (the cold cap doesn’t protect those, so they surrendered almost immediately) and the effortless disappearance of hair elsewhere, however, I actually quite enjoyed. It gave me a cool, slightly alien vibe.

Very Leeloo energy (Movie: 5th Element)—for some reason.
I’m not even sure she had sideburns.

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