(Warning: This blog post is non-technical but purely personal. I write openly about my current health issues. This blog might be triggering for people who struggle with, or lost dear ones to, cancer and other similar diseases.)

Time for an update in my leukemia diary. I had planned to write as soon as I was admitted to the hospital. I changed that plan a bit, for reasons I’ll get into later. But I am in hospital now, for a few days already.

Awkward communication

The last thing I had heard from my hematologist when I wrote the previous blog was that I would “likely” be admitted “next week”. That was on March 4, so she referred to the week of March 9 to March 13. I really expected a call on Monday, perhaps Tuesday, to inform me of the date. And when it was Tuesday evening and no call yet, I started to believe that perhaps it would be after yet another weekend at home.

And then, on Wednesday morning, I got a call. From the hospital.

“So, is it a problem to arrive early tomorrow?”

“Tomorrow? You mean I’m admitted tomorrow?”

Yeah. They had never bothered to tell me that part. And the woman who wanted to talk about my arrival time clearly thought I already knew that bit. That was really awkward.

And so, I arrived at the hospital on March 11 (the birthday of my late father – sorry, mom, I really had not wished this on you). At 9 o’clock in the morning, because that was the hospital’s request. Blood lab at 9, nursing ward at 9:30.

Early, but late anyway

Despite being there early, they could not instantly start me on the chemotherapy. Because … well, reasons. I have given up on trying to understand the special logic that apparently only hospitals employ.

By early afternoon, they could have gotten me started. But there was a problem. I need to get two dosages per day, with 12 hours in between, over a period of 6 days. If they would start me at that time (it was about 2-ish), the second dosage would have to be applied at 2 AM. Which also means getting a nausea suppressant at 1:30 AM. Most likely several alerts from the infusion pump, which really is a very sensitive piece of equipment. And then they need to flush the lines for 15 minutes, and then switch back to the normal NaCl solution. Say good bye to my night rest!

And so, they decided to wait until 9 PM. Which is indeed a lot better, because now the second dosage starts at 9 AM, with nausea suppressant at 8:30. Great.

But remind me, why exactly did I have to be in the hospital at 9 AM already?

I also did not get my PICC line immediately. The original plan had been to use a regular peripheral IV this time. After I told them how much difficulty they had had to apply one earlier, and after they were indeed unable to get it working, they agreed that a PICC line would be a better idea. But there was no capacity to make one. So for the first night, I did have to use a peripheral IV, which was applied by a trained specialist. Oh well.

I did get my PICC line the next day, so at least that has been sorted out.

Side effect (but different)

Medication of course has side effects. Which means I also get medication against those side effects, which then incurs yet other side effects, and so the list grows. But that’s not what I want to write about now.

I mentioned the twice daily chemotherapy. I mentioned the nausea suppressant. I noted that at 8:30 PM, this suppressant was administered through IV (or PICC). But in the AM, I simply got a tablet. Curious person that I am, I asked about this. Apparently, the suppressant I get in the evening is mixed with another medicine, that strengthens the power of the chemo, but that should only be given once per day. The regular standard is to do this before the first, third, fifth, etc. application of the chemo. And nobody took the time to check whether that standard still made sense in my case. Which, frankly, is a bit of a missed opportunity.

You see. That extra medicine also has a side effect. It makes the patient quite restless. Perhaps even a bit hyper. Not a problem in the morning, when the treatment normally starts. But in my case? Giving me that in the evening, just a few hours before bed time, might not have been the smartest move.

After I asked about this, the nurse realized that there is room for optimization here. He put in a request to swap the order. But that will have to be decided by my doctor, who is back at work on Monday. So for now, it remains like this. (Luckily, apart from a restless first night, I have so far generally slept quite well).

Feeling good

Apart from this, I am still doing quite good. Not a surprise. It was the same the previous times I had chemotherapy. That’s how it works. It is a very slow working poison. During the 6 days it is infused into me, I hardly notice anything. Perhaps a bit towards the end. But once the treatment stops, I start to feel miserable, and I should hit rock bottom (it is even officially called “the dip”) by about a week to ten days after the last chemo was administered.

And that means I am right now still working. I’ve done some client work yesterday. I’ve been working on a YouTube video for my blog/vlog yesterday and today. And I deliberately prioritized that over writing this update because of this:

Room assignment

During my first period of sickness, during all three hospitalization periods, I was always in a one person room. I thought that was standard for my situation. Turns out, I was wrong.

I was admitted into a two-person room. Now, I don’t mind people. But not all the time please. I really need my time alone. So I was quite happy that my room mate was discharged in the afternoon of my first day, and so far I have had the room to myself.

But that will change!

On Monday, this room is needed for new admissions. So I will have to move tonight. I expect to be moved in about an hour after typing this sentence, which means that the post will probably come from the new room.

And that new room … is a 4-person room! Granted, it is not full. I think I’ll be the third patient in that room. But even when people get discharged, as long as I remain in that room I cannot reasonably expect to be on my own.

I hate that!

But that is why I changed my plans and worked on the video first. I can still create that video now, I still feel good enough. Granted, without good lighting, green screen, and my good microphone, it sounds and looks rather shitty. But the content is (hopefully) still good.

But I can’t record in a room with other people. So I knew that I had to get the recording done today.

I succeeded. I even got to finish the editing. Tomorrow, if all goes well, I plan to work on adding captions (because the AI generated captions that YouTube wants to put on there really suck). And I will probably have it up tomorrow, unless I start to feel bad much earlier than expected. After that, I will continue on other work (such as editing a video for the SQLServerFast Execution Plan Video Training that was already recorded, or pushing changes to the Execution Plan Reference). But I almost certainly won’t be able to produce more vlogs until I am back in a private room or back home, with enough energy to sit up behind a camera for an hour or so.

But at least I will have this one!

And that is why this update is not written and posted on my first or second day in hospital, but only now.

A word of thanks

I would like to conclude this by saying that I am, once more, absolutely overwhelmed with all the responses I got to the return of my leukemia. On here in the comments. On LinkedIn. On Bluesky and Twitter. In mail. I am sorry, there are too many to reply to, so I won’t. But trust me, I read them all and I value them all. It really means a lot to me that so many people are praying for me, or sending positive vibes, or just wishing me strength. Praying, sending, and wishing might not fix my body. But it certainly mends my mind and helps me stay positive in all of this.

So, thanks!