(Warning: This blog post is non-technical but purely personal. In my leukemia diary, 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.)

I planned to write this on Saturday, March 28. But I didn’t. It’s already Tuesday, March 31 by now, and I finally started writing. There is a reason for that, and I’ll get to it. But, let’s first start with the post I wanted to write, the post I already had drafted in my head, on Saturday.

That post would have started with a short intro that I had been through a crazy ride with wild ups and downs, and then break down in a day by day description.

Tuesday, March 24

Today I got good news. And then I got even more good news!

During his periodic visit, the ward doctor made me a proposal. Given how I was still progressing well, and without complications, he wanted to assess whether I can continue the rest of this first treatment period as an outpatient. He instantly added that it wasn’t certain yet, but he wanted to know whether I would be interested (how is that even a question??) and whether my family and I were able to meet all requirements, which he then outlined.

That conversation got interrupted when my hematologist stepped by to inform me that they had identified a potential donor! Lots of tests still to be done, lots of planning, but if all goes well, I can receive my shiny new stem cells in May. Yippee!!!

She went on to the next patient, I got to hear the rest of the requirements for outpatient treatment from the ward doctor, and then I called my wife to share the good news. We worked through the list, ticked off all the boxes, added a few new questions just to prevent all risk, and then, when the ward doctor returned, I told him that yes, I really love all the hospital staff, but I still very much prefer to be home. He said he’d work on it. Still no guarantees.

Wednesday, March 25

The ward doctor returned. He confirmed that I do indeed qualify for outpatient treatment. But there was a problem with the hospital logistics. No capacity.

Just as I was about to curse my fate, he quickly added that he had found an alternative. Instead of discharging me from the nursing ward and having me go to day treatment three times per week for my checkups and (if needed) blood or platelet infusion, they would keep me enlisted as an inpatient in long-term care, but send me on leave until the next required checkup, and then repeat the process. No real difference for me (except which floor I would have to go to on Monday, Wednesday, and Friday), but now the logistics worked out.

And that was the start of a day full of changes.

Because a few hours later, the plan had all of a sudden changed back to the outpatient version. And then it changed again. The final plan, that I did get sent home with, was that I was sent on leave until Friday, report back to the nursing ward for the checkups, and then they would discharge me to become an outpatient, so go to that other floor next Monday.

Whatever. No difference to me. After a long day of waiting, getting information, more waiting, getting huge bags of pills to get me through the week, and then even more waiting, I finally sat down (okay, laid down) on my own couch in the great company of my wife and my daughter (who had decided to visit for a few days).

And I slept in my own bed! So great!

Thursday, March 26

The day was great. I was home with my wife, and with my daughter. Granted, I think I spent a lot of time snoring on my couch. I’m still sick, of course. But I was home, and it was great!

But after dinner, my wife noticed that my face looked a bit red. As if I had a fever. We had already taken my temperature about an hour before, and it had been normal. But better safe than sorry, so we tried again. And that’s where it got weird.

The first measurement showed that my temperature was a bit high. But I didn’t feel that way at all. So we measured again. And we got a completely different readout. We tried a few times more, and the temperatures were really all over the place. I don’t recall the exact values we have seen in less than 30 minutes, but I think they went all the way from 36.5°C to 39.1°C (that’s 97.7°F to 102.4°F).

With at least some of the measurements clearly above the self-reporting threshold, I had no choice. Even though I did not exhibit any of the traditional symptoms of fever, I called the ward and explained the situation. They called the on-call doctor, who decided that the safest action was to bring me in for additional checks. So after one day of “freedom”, my wife and daughter accompanied me back to the hospital. Where, of course, my temperature was totally fine and perfectly … unstable! Granted, it was not as up and down as our home measurements. But the hospital’s in-ear thermometer quite consistently showed a difference of almost a full degree Celsius (which is almost two degrees Fahrenheit). And just ten minutes later, they would be different again.

The nurses could not explain this. Neither could the doctor. And there were still the highs that we had seen at home. It took a long time before the decision was made. Since I was scheduled to show up for regular checkups the next morning anyway, they decided it was safe to send me back home.

So, after a 35-minute drive, a 90-minute stay that consisted of a few short doctor or nurse visits to examine me and tell us they didn’t know either and a lot of bored waiting, and then another 35-minute drive, the evening was gone, we were all exhausted, and I slept once more in my own bed.

Friday, March 27

Friday was the scheduled check-up. With bonus checks this time. Luckily I was asked to arrive at only 11:00, so we could all sleep off the exhaustion of the previous evening, and we got to avoid commuter traffic.

My daughter had returned to her own home and husband, so it was just my wife and me this time. I reported at 11, and that was the start of a long, long, very long day.

There were of course the standard tests. Some blood from my PICC line to check whether I needed outside help. (I did – my platelets were low, so I was ordered a platelet infusion). And a few extra tests, because of last night.

It took a long time to get the platelets. And then, after they were in my body, a long time to get the results of the new test that they always do to see if I need even more. All that waiting is not a big problem if you are in hospital anyway. But when you are waiting to be sent home, then that waiting feels like wasted time.

In the end, we finally were done. Except we still had to await a decision: am I sent on leave again? Or is it, considering what happened yesterday, better to stay in hospital?

The decision was positive. At 17:30, I finally crashed on the couch, as my wife hurried to the kitchen to cook us some food. We were exhausted. We just wanted to sleep. But the rules were clear. We had to keep tabs on my temperature.

After yesterday’s seemingly random temperatures, even though the same had happened in the hospital (“it’s not the thermometer being weird, it’s my body”), we decided to play it safe and buy the same type of ear thermometer that the hospital uses. Time to test it. Push the button … beep … 39.1°C (102.6°F). And while there were once more major differences between left and right ear, and major swings after waiting a few minutes, it was clear that we had to call the ward again. And it was not a surprise that, once there, they told us that I had to stay this time. I had counted on that. We had my weekend bag already with us. I waved my wife goodbye (no kissing, I am too vulnerable and we don’t want to risk her infecting me with anything), and resigned myself to another night in a new 4-people room.

Saturday, March 28

And that’s where I am “now” (but see below). In a hospital room, writing my blog about a very crazy period of four days, with good news, wild swings, two days as outpatient but in reality effectively only one, and now back in hospital.

They drew a large amount of blood yesterday. To cultivate for a few days and then inspect for whatever type of bacteria, fungus, or other atrocity is causing my temperature to spike so much.

The good news? It still does not feel like I have a fever. I still feel like I could just as well be at home. Except that at home, I am unable to take intravenous antibiotics. And at home, there’s far less options for immediate help should my condition suddenly deteriorate. Which, luckily, has so far not happened.

The real now

That concludes what I had planned to write on Saturday. Except I didn’t. I just never got around to assembling the energy to take my laptop out of my bag and actually type it.

Why not?

Fatigue. Of the mental kind.

All day, on Saturday, Sunday, and Monday, I just had no energy. Except I actually did have energy. Once I did manage to get myself off of my bed and do something, like take a wife-cooked meal out of the patient fridge and pop it in the microwave, I was able to walk at a steady pace. Very different from the slow crawl I recall from some periods during my first leukemia treatment. The energy was there. Not in excess. I would not have been able to walk two kilometers or so. But I would have been able to type a blog. If I could just bring myself to start.

I could not. On Saturday, I still felt tired from all the events since Thursday evening. On Sunday, I felt even worse. And that continued on Monday. So with hindsight, with that mental fatigue in my system, I guess it was indeed a good thing that I was not at home. It would have been needlessly strenuous for me, and probably for my wife as well.

During that period, I also consistently had a high temperature in the morning (though never as high as at home), and then regular temperatures for the rest of the day. In this case, I think I know why. I have been given paracetamol (acetaminophen). Not to suppress pain (I don’t have any), but to suppress the fever. And it’s working. The morning temperature measurement is the only one that is taken before I take the paracetamol. That’s when I have a fever. The rest of the day, my temperature is only okay because of the paracetamol.

This morning, I felt different, though. More energetic. I knew that today, I would actually get the laptop out of my backpack. I would do some work (invoicing – it’s month end after all). And I would at least get started on my blog.

My temperature? Just 36.2°C (97.2°F). Before the paracetamol. I did take one more, then realized how foolish that was. So I stopped taking them. And my temperature has remained good throughout the day.

All the bacterial blood work of samples taken over the past days has also finally come back. All negative. Nothing found. I’ll admit, that frustrates me. It’s like getting a call from a client that a query is slow, I log on to their system, I can see that it was indeed slow when they called, but it’s doing great again now, and no matter what I do, I can’t reproduce the issue or explain why it was slow at that time. The client is happy, but I secretly hope the problem returns, so I can finally figure out the root cause. (Don’t tell my client I said that!)

Well, like the client in my analogy, I do in this case definitely not hope that the problem returns. I hope it stays away.

Tomorrow

Tomorrow is Wednesday. One of three fixed days for doing various blood tests related to the chemo treatment. Monday showed first signs that I might be “repopulating” (which means that, after the chemo caused my blood to deteriorate by the day, my stem cells are now starting to produce more new cells to fill out the deficits). I hope that tomorrow’s lab work confirms that. I also hope the fever doesn’t return.

Would that mean I get sent on leave again? Or have the doctors become too hesitant after last week’s events?

I don’t know. I know what I hope for. But most of all, I know that I will do whatever the doctors believe to be in my best interest. Because I still want to beat this. Again. Preferably from home. But from here in hospital if that is the best option.

Thanks for reading!