The calm before the storm

The calm before the storm

(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.)

This is the fifth post in a series on my personal road from first signs of leukemia, through diagnosis and treatment, to, hopefully, full recovery. Click here to read all posts in this series.

I have fallen a bit behind with my writing. I started writing this on Monday, September 26th, and I hope to finish it on Tuesday, September 27th. But this post covers the period from Tuesday, September 20th until Saturday, September 24th. A rather boring period during which not much happened.

Let me also point out that, although I write in diary format, I do not actually write diary entries as the days go. Most of what I write is a reconstruction from memory. And in some cases with some creative liberty. Nothing outright fantasized or changed, just juiced up a little.

Tuesday, September 20th

I didn’t know it yet at the time (though I did expect it), but days in the hospital get boring real fast. This day was, with hindsight, one with at least some change.

What change?

Well, in the morning, a doctor visited me at my bed with a machine and a bunch of electrodes to make a ECG. I had to take off my shirt, he pasted the electrodes all over my torso, connected some wires, and then asked me to lay still for a short bit. And then he removed the electrodes and was gone again, all in just a few minutes.

I guess it’s telling that while my wife and daughter visiting was the highlight of the day, this test came in second.

Visitor rules

Speaking of visitors, the rules here in the hematology ward are very tight. I do not know whether they’ve always been like this or whether they’re like this because Covid-19 is still a thing, but I do know that they are strict.

I am allowed a total of four visitors. No, not per day. Not per week either. Four total. Only those four are allowed to visit me during my entire hospitalization period. Nobody else can visit.

Of those four, a maximum of two can visit each day. They do need to mask up of course, and sanitize their hands. And while I’m not sure this is an explicit rule, we also maintain a safe distance as much as possible.

If two do visit, they can’t go to my room at the same time. So on this Tuesday, when my wife and daughter visited, they drove together, but my daughter had to wait in the waiting room just outside the ward when my wife went to me, and then after some time had passed my wife left me and told my daughter she could now get in. (Note that this rule does have an exception for underage children; so no, the hospital does not mandate unaccompanied minors in the waiting room).

Wednesday, September 21st

Medically, there was only one thing out of the ordinary today. Three times a week a sample of my blood is analyzed. Today my Hb was low enough that the staff decided to give me a half liter of donor blood. Doing that was actually easy. The PICC line in my arm actually has two entrances, and they remain separate until the end of the line. The second one is of course used to get a sample of my blood for analysis. But it can also be used to attach a second IV drip. There are multiple entrances on the IV line itself as well, so the extra line is not always needed. But in this case, there’s apparently reason to ensure that the chemotherapy poisons and the donor blood do not mix until they’re in my body. So the second line was used.

Another thing I learned is that empty IV bags are never removed. The line has a total of, I think, six or seven attachment points. Every new bag is added to a new attachment point and when all are used the entire line is replaced by a new one. Once more, hygiene and sterility first.

Picture of many fluid bags on my IV drip deviceTo the right you see a picture I took today of the Christmas tree on my IV drip device. The blood bag is clearly visible, with its own line. All other bags are attached to the other line. In one you can still see a bit of the orange residue of the drug I get for one hour each day. One bag contains the other chemo drug, and then there’s a partially filled bag with NaCl solution, used for cleaning. It might also have some antibiotics mixed in. The rest of the bags are empty. (I know that some bags are obscured from view, I originally took the photo with another purpose otherwise I would have picked a better position).

Through sheer and total unplanned coincidence, we had already agreed a long time ago that both my kids would be at our house this weekend. They’ve moved out a long time ago but left a lot of their stuff in what used to be their rooms. You cannot keep everything forever, and they had decided that this week, they would join forces to make a good start at going through their childhood memories and deciding what can be thrown out and what needs to stay; and where to keep that last category.

So as an unexpected side effect, this entire week it was easy for my wife to every day take one of the kids with her on her visits to the hospital. Today it was my son.

But other than the visit, today was really my first 100% standard day. On Tuesday I still had the ECG. On Wednesday I had absolutely nothing out of the ordinary, the whole day was standard and routine. Let’s talk a bit about my daily routine.

Daily routine

When I say that the days are standard and routine, that does not mean that not much happens. Throughout the day, staff keep walking in and out of my room. Nurses check in on me, at set times to measure my vitals, or at random times just to see how I am doing. The doctor visits every weekday for a short update on how I feel and to let me know if there are any developments. People come in to check and replenish supplies. Cleaning staff ensure the room is kept nice and tidy. Nutrition assistants come to inform what I would like to have for each meal, bring me my food, and clean away the clean plates.

The food choices are … okay, I guess. For breakfast and lunch, there’s a fair selection of choices. It annoys me that they’re the same each day, though. Which is odd. I am a man who loves his routine. When at home, I eat the exact same breakfast and the exact same lunch each day. But that exact breakfast and lunch are not available here. And when I have to go for second choice, I want to be able to vary. My options there are, for my preference, a bit limited.

For dinner, there’s always the choice between either a standard meal, or I can piece my own meal together by making one choice (from usually four or five options) in each category. I typically do the latter. The standard meal too often has two good looking ingredients and one that I don’t like at all. But the build it yourself also has its shortcomings. One day I decided to go for a salad instead of warm vegetables. On the touchscreen, the description reminded me that I definitely should add a dressing. But … in the extras section, there was no dressing at all available! When I asked the nutrition assistant, she admitted that the expensive automation they use in this hospital apparently has room for only a fixed amount of choices and when they are all taken, then no dressing can be offered. She suggested to order a dressing the first time I saw one, even if I don’t take the salad, and store it in the refrigerator.

(I’m guessing it’s a presentation layer issue, not a database issue. But perhaps I’ll offer the hospital my professional services regardless. Later, when I’m fully cured).

And that’s not even all the meals I get. I am not sure if this is generic hospital policy or only on some specific wards; I think the latter: as long as patients are still able to eat normally, have them eat as much as possible, because soon enough they are likely to start losing appetite and/or getting nauseous so better build a buffer.

Lord of the Rings movie fragment: "What about second breakfast?"At ten, with morning drinks, I can choose a small snack or fruit. At about eleven there is often a cup of soup. Some days I get offered a little extra, such as an omelet or small pancakes, with lunch. Then at two when drinks are served again, I once more can get another snack. Plus a hot snack at three thirty, and then of course the main meal between five thirty and six. And the nurses keep reminding me that I can always ask for extra food if I want to.

There’s more to life than just food, of course. And more things to do in my daily routine. The importance of hygiene is stressed all the time. At home I normally do not shower daily (sorry, I know some of you will think this is terrible, but my sensitive dry skin prefers to remain intact). Here, I definitely do. I brush my teeth four times a day, after every major meal and before going to sleep. And each time I then also rinse my mouth with a salt solution. Terrible taste but I’m sure it helps keep me safe from those pesky infections.

And don’t even get me started on how often per day I have to wash my hands here. I though my wife and I had become a bit obsessed during the Covid-19 peak, but that’s nothing compared to my current routine.

And yet, despite the amount of interruptions, meals, and little tasks, most of the day is still idle. Depending on my energy, I fill that time writing this blog, working on the next video for the SQLServerFast Execution Plan Video Training, playing games, or watching videos. Or exercising – though that’s a really big word for what I actually do. More on that later.

Thursday, September 22nd

Medically speaking, this day was just like the one before. I think, but not sure exactly, this was the first day that, after taking my weight, the nurses gave me a medicine to ensure that I would pee more. My body was apparently retaining too much moisture. I also was given a tongue scraper. As a side effect of my chemotherapy, I had started to get a really terrible taste in my mouth. Regularly scraping my tongue clean diminishes that a bit.

This might also have been the day that I switched sleeping drugs. Now don’t get me wrong, I am totally not a fan of sleeping drugs. All of them tend to be dangerous and addictive. Never ever use them, unless there is a real (and hopefully temporary) need).

In my case there was a need. I am sick. My body is being brutalized by both cancer cells and chemicals. I absolutely need to rest, and for days on end I was unable to get more than perhaps two to three hours in each night. So I caved and asked for a sleeping drug.

The drug I had been given at first was great at making me fall asleep fast. But if I woke up again, most of its power was gone already. And it turned out that waking up multiple times each night was my biggest problem. So the new pills aim at helping me stay asleep once I am sleeping.

My visitors today were my daughter and my son. My wife had used this day to work from the office. (Her boss is extremely accommodating, but in return she wants to be accommodating as well and working from the office on this day worked out well). My son would return to his own home that evening, my daughter to hers the next day, so this was the last day it was easy for them to travel together.

Let’s go for a little walk

Did I already mention that my exercise opportunities are rather limited?

After I had gotten my diagnosis and the advice to exercise as long as I still can, until my admission, I had taken to daily walks in the forest. During my previous toothache-related admission, and on admission day, I had replaced those with walks in Utrecht, in the area around the hospital. Not quite as good but still outside in the (somewhat) fresh air.

That ended when the chemotherapy officially started.

“As long as these chemicals are on your IV drip, you cannot leave this side of the ward. You have to remain within the automatic doors.”

“How so? Is that in case something happens to me?”

“Oh, no, you’ll be fine mister Kornelis. It’s the chemicals we worry about. Suppose you fall and the fluid bag breaks open? Or suppose there’s a small hole somewhere and you leave a trail of drops? That would be terrible.”

I am the type of person who will never pass an opportunity to make a good joke. Okay, scratch that, to make a joke. So I thought this was my chance to be funny.

“Oh, you mean that the wing of the hospital where that happens would have to be closed down completely?”

The nurse didn’t laugh. They replied, dead earnest.

“Yes. And not just shut down, it needs to be shut down and then cleaned by firemen in special protective suits.”

Oh boy. Good to know they’re not putting anything, you know, like dangerous in my veins.

When I relayed this story to one of my good friends in the MVP program, she responded with a link to a fragment of Pixar’s Monsters, Inc. that she was reminded of when reading that. I think it quite accurately captures what would happen if I would indeed spill any chemicals outside this little dedicated ward. So for your amusement, here’s that link:

But no worries. I have been a good guy. When I walked as exercise, I always stayed within the dedicated area. Ten circles to the left, then turn and ten circles to the right to prevent boredom. (HAH!!)

Friday, September 23rd

The new sleep drug worked well. I fell asleep at around 11:30 and didn’t wake up until 5:30. That was more sleep in a single night than I had had in a long time.

Apart from needing help to regulate my water household, I now also needed help with my bowel movements. Oh well. I just take all the meds the doctors and nurses offer me, like the well behaved man I am.

Other than that, nothing special. Every time my pulse, saturation, and blood pressure are checked, all boxes tick green. Based on those readings, I’m a prime example of a very healthy human being. Until you analyze what’s actually in my blood. (And that was done again today as well. No, no donor blood needed this time. See? I’m top fit! LOL)

Netflix and chill?

Speaking of being top fit. Luckily walking that little round around the ward is not the only thing I can do to get in some exercise. There’s also an exercise bike available for use in one of the common rooms.

The problem is, that bike is exactly as exciting and interesting as the rounds around the ward. That is: not at all. I sit there, I move my legs, I stare at the wall, and I wait until I feel I have done enough. That’s all.

So after my first “ride” I decided to try to juice it up. Perhaps some music would help? I installed Spotify on my phone (because, yes, I am one of that rare breed who did not have it on my phone already). I started a random playlist, plugged in my headphones, and got on the bike. And I still got bored beyond belief. Yes, I heard some nice music (and also Justin Bieber – never again random playlists for me!) while I was bored. But I was still bored.

And then it was one of the nurses who gave me the golden tip.

“Why don’t you just grab the tablet, log on to Netflix, and watch a movie while exercising?”

She refers to the tables that are available in each room, for entering your food choices, to provide some information, and to help keep patients entertained. They are detachable and do have an ear phone plug, so it was a great idea.

I normally hardly ever watch television, or Netflix. Before I got ill, there really actually was only one very specific situation where I would use Netflix. When flying. That happened a lot before Covid-19 and far less since. But whenever I traveled to some corner of the world to speak at a conference, I would make sure to have several episodes of Suits downloaded on my phone, that I could watch during the flight.

Why Suits? I don’t know. Why not? I one day discovered the series. I liked it enough to keep watching, but not so much that I would binge each season as soon as it was released. So I still have lots of episodes that I can watch before I run out.

The tip worked out. Now, armed with my tablet and headphones, I was able to keep spinning that exercise bike until my legs gave up, instead of stopping hen my brain couldn’t take the boredom anymore.

Saturday, September 24th

Breakfast came, with the exact same breakfast choices as all days before. Feeling adventurous, I decided to go for a topping I had not tried before, so I asked for a sandwich with smoked beef instead of my usual ham, cheese, or smoked chicken.

My stomach disagreed with me. As I was still chewing down my last bite, I felt how my stomach contracted painfully, a clear signal that my body had decided that whatever I had just put in there, it had to go. I barely made it to the sink in time.

Once my stomach was empty again, I started to feel better remarkably fast. After cleaning up and rinsing my mouth and a short break, I actually was able to finish the rest of my breakfast with no issues. And due to missing one sandwich, I actually had a bigger lunch than normal.

But it did make me wonder. Was this just a random response from my body on one specific food that I don’t accept anymore? Or did this morning mark the start of the next phase?

Leukemia diary
First day in the hospital
Black Friday Charity

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1 Comment. Leave new

  • I “liked” this because I find it interesting and informative, not that I like you having to endure this process or this illness. I am glad to hear you find a way to exercise without being so bored. Because the air quality in my area has been only “Fair” all summer, I’ve been using a semi-recumbent bike in my home gym, which is parked in front of a TV with a Roku so I can watch Netflix, HBO Max, or Disney+ while I ride. It makes the time go by much faster. For bonus difficulty points, I use hand-weights for various exercises while biking, to make the most efficient use of my time. Of course, I can bike for much longer than I can use the hand weights, so I drop them to the floor as gently as I can when I have had enough of them and keep biking.


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