July 2, 2026 - Treatment 1
On the day of the first treatment, I had to check in at 10:00 am, so a five-kilometer walk beforehand seemed like a good idea.
After being dropped off by Taxi Caro, I walked to the oncology department. A cheerful staff member greeted me with the friendly words: 'Welcome, Mr. Ezinga, I'll be taking care of you today.'
I got to sit in a comfy recliner, and the nurse briefly quizzed me on whether I'd understood everything from the intake. Miraculously, it all checked out—no brain fog today!
The IV needle went in quickly, and the first drug, Dexamethasone, slowly flowed through my body. This medication prevents infusion reactions such as nausea or other allergic reactions.
Now there was time for coffee with cake. The cake was spread a bit thinly with butter, but hey, at least there was butter on it!
During the intake interview on June 30, I was told I'd also have to swallow a big pill: Cyclophosphamide, the chemo pill. The nurse showed up with a box of relatively small pills, four of which I had to take at once. That was quite different from the shuffleboard-disc-sized pill I'd been bracing for! The box also had a different name on it that I didn't recognize (Endoxan).
Before I accidentally found myself as part of a test group for a new Viagra drug, I thought I'd better double-check. As it turned out, Endoxan is simply the brand name for cyclophosphamide. With that mystery solved, the four chemo pills could finally be freed from their plastic packaging and, accompanied by a generous gulp of water, made their way towards the thinly buttered, by now thoroughly chewed, cake.
I get to take the rest of the chemo pills home and still have to take them for the next five days.
The Dexamethasone went in quickly, so the next bag could be hooked up to the IV (Rituximab). Since this is the first time I'm receiving this drug, it's administered more slowly, allowing the nurses to monitor how it's going—which is why I have to be at the hospital a bit longer today. Next time it will take a maximum of two hours.
My temperature and blood pressure were checked regularly and stayed stable throughout. I barely felt any of it.
The treatment can make you a bit drowsy, but a power nap wasn't in the cards for me yet. After firing off an important email, I could get started on my puzzle book.
The first puzzle was a word search, a simple start. The first word was Allah, but no matter how hard I looked, I couldn't find it. Was this chemo brain already kicking in, or was my indoctrination so deep that I was blind to the names of other religions? After looking again, I did spot two l's next to each other, and I noticed 'word snake' written above the puzzle... ah, you're allowed to cross out words in a winding path. No chemo brain yet, thankfully!
Of course, I wasn't the only one with a needle in my arm. Several patients sat quietly in their chairs and were able to head home again after an hour or so. One had brought some knitting, another was dozing off a bit, and someone else was busy scrolling on their phone.
Every so often you'd hear a device beeping, which meant someone was being disconnected because their treatment was done. In the five hours I sat there, three men cautiously walked up to ask why I was sitting in that chair (probably because I look a bit younger than the other patients).
One man asked cautiously: 'You're surely not waiting for the bus!' None of the three had ever heard of Waldenström before. They wished me strength, and of course I wished them the same.
Meanwhile my eyelids grew heavy, and it was time to tilt the recliner all the way back. My brief nap was rudely interrupted by my infusion pump beeping loudly. It was time to flush the IV line with saline so the last traces of medication would go in and the tubing would be clean when disconnected (for the nurses' safety).
Relieved, I was allowed to head home, but not before thanking the staff warmly. In three weeks I'm welcome back for the next treatment!