(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.)
It’s been a while since I last blogged about my leukemia. A full month, to be exact.
In the first three weeks of that month, nothing special happened. I was home. I felt good. I made sure to get my daily walk in, to rebuild my fitness (well, except that one day when it was 25°C [77°F], and I decided to lie on the beach instead). I ate (more than) sufficient food, and it tasted well. I worked on my next video. And I had a few appointments in the hospital, for talks and examinations, among which the bone marrow puncture to determine how successful the chemotherapy has been.
And then, in the week after that, so much happened that I could hardly keep up with all the news, and needed time to process it all. Frankly, I’m not sure I already have. But I at least had two days without news, now. It has landed enough that I can at least sit down and write it all down, to keep those who are interested updated on my situation.
Wednesday, April 22, 2026
One week after my bone marrow puncture, my hematologist called with the results. She had bad news. She had already explained before that the cancer cells in my body are the ones that survived the first chemotherapy attack. In other words, the most resistant little buggers have survived and then created a new generation. That can lower the effectivity of the new treatment.
And indeed. While there was some reduction, it was not enough. I now had 8% blast cells in my blood, down from 13%. In order for the chemo to be called successful and the rest of the planned procedure to be useful, this percentage had to be at least below 5%, preferably even below 2%. So while there was at least a silver lining that my cancer cells are, at least at this time, apparently quite slow, the bad news is that the planned follow-up with a second round of the same chemo and then a stem cell transfusion would not work.
My hematologist added that she would ask around in other hospitals to see if there are any research programs that might be helpful for me. If not, then her advice would be to try my luck with a different type of chemotherapy. A lighter form, but also based on a different process. Perhaps my cancer cells would be more susceptible to this alternative type. But it was clear that the odds for this alternative were not very good – else she would have started with this chemo!
She would have more information on Monday.
Monday, May 4, 2026
We went to the hospital, to speak to my hematologist in person.
She told me that she had indeed found a research project, held in another Dutch hospital, that she thought looked promising. But she did not know for certain whether I would tick all the boxes to qualify for this project.
The project looks into a new development. The way it was explained to me, the treatment consists of two elements. It starts with giving the patient genetically engineered “pre-trained” T cells (a type of white blood cell). The second ingredient is a still experimental new drug that in laymen’s terms can be described as a magnet that pulls those genetically altered T cells and the cancer cells towards each other. The idea is that this combination allows the donor T cells to be more effective at removing the cancer.
To qualify for this research project, I had to tick five boxes. My hematologist had already been able to check off three of the five. I am sufficiently fit (this is where I thanked my discipline to take those daily walks and push myself to walk further each day – now routinely scoring over 5 km, 3.1 miles, each day). My DNA is of the right type that my immune system likely won’t reject the modified donor T cells. And my cancer is slow enough that the treatment has sufficient chance of success.
That left two tick marks. One is that there has to be a specific “receptor” at the outside of my cancer cells, because that receptor is what the magnet attracts. She told me that this is a very common receptor, but it would still have to be examined because it does not exist on all cancer types. The last tick mark was the most difficult, though. The project requires that test subjects have a kidney function of at least 60. The last two tests that she had conducted were at 57 and 58 – quite good for someone who has just a single kidney, but just below the threshold. However, the decision would be based on a new test, to be conducted by the doctor in charge of the project. Hopefully I would score a bit higher this time, and be above the threshold.
She did also add that this research project is still in an early, experimental phase. The only people who are even allowed to enlist as test subject are patients for whom there is no promising traditional treatment left. She did indeed also confirm that the alternative that she had mentioned last Wednesday is not very promising. Depending on which doctor she asked, the estimated chance of success varied between 15% and 20%.
I was given the choice. Try to enlist in the project and become a human guinea pig, with a totally unknown chance of success, or choose the traditional way, with about a 1 in 6 chance of success. Since the latter option would still be available at a later time, unless my cancer starts to grow out of control, I opted for the research project. While crossing my fingers for those last two tick marks – especially the kidney function!
Tuesday, May 5, 2026
We had an appointment with my new hematologist at 11:00 AM in Amsterdam. He took a lot of time to explain the details of the experimental new drug, the process of the trial if I would be accepted in the program, the associated risks, and everything else. I was happy to find that he seemed to be just as nice and just as driven as my “regular” hematologist in Utrecht.
He also once more stressed how early stage and experimental this drug and the tests are. If accepted in the program, I would be the 20th person to receive this drug.
Once it was clear that I did not want to back out of the project, he immediately ordered blood tests for me, to check my kidney function, and then took me to a treatment room where he himself applied another bone marrow puncture, so the lab could check the receptors on the cancer cells.
The result of the blood tests came in the same day already. In the afternoon, just as I was in the middle of a forest for my daily walk, he called me with the result. My kidney function showed up as no less than 76% in this test! Which meant that I had my fourth tick mark, and only the bone marrow test result, that would come in the next day, was still standing between me and the research project.
I was of course curious to how such a huge improvement is possible. So he explained to me that the blood values are just an indication, and that there are multiple calculation method to come from whatever is measure to a percentage kidney function. The method prescribed by the manufacturer of the experimental new drug happens to be one where weight is one of the factors. And because I, as he put it, “am rather short in comparison to my weight” (God, I love that euphemism for being fat, and if I survive this, I’ll keep using it the rest of my life!), that calculation method favored me.
Anyway, I was happy. I had a strong feeling that this experimental drug would work on me, and the last tick mark, the required receptor, was rather common. Surely I would meet that requirement!
Wednesday, May 6, 2026
Except I didn’t.
On Wednesday, late in the afternoon, I got a call from the Amsterdam hematologist.
“I have bad news, and hopeful news,” were his first words.
The bad news: The cancer cells in my bone marrow do not have enough of the required receptor. So I do not qualify for the project, and he will transfer me back to my regular hematologist in Utrecht for further treatment.
But the hopeful new: in his sample, the percentage blast cells in the bone marrow was a lot lower than in the sample taken on April 15. It was now at 3.8%. That is below the 5% threshold that had disqualified me from continuation of the regular procedure. Granted, it is still above the 2% margin that my hematologist would have preferred, but it does at least provide a glimmer of new hope!
Thursday, May 7, 2026
This day, I got the expected call from my regular hematologist in Utrecht.
She, like her colleague in Amsterdam, did not understand what could have caused the percentage blast cells to go down, four weeks after the end of the chemotherapy. They both have offered me some speculation. One theory that they both mentioned is that the measurement of April 15 was influenced by my bone marrow still repairing itself after the chemo. Apparently, regular bone marrow repair can also create blast cells, that are then not indicative of leukemia. However, that theory was hard to align with the fact that my blood values (red cells, white cells, and platelets) were all very good already at April 15, which is not possible if ones stem cells are still repairing.
They had other theories as well. But they were different, the theory of the one was rejected by the other, and it was clear to me that the honest answer is that they don’t know and don’t understand what is happening and why it is happening. My regular hematologist added that in all her years of practicing, she had only seen this once, 15 years ago.
Anyway, she told me that this new test result makes it clear that she needs to review my case further. She wants to see me again next Monday, with new blood tests, and then she will also talk me through the options for further treatment that she sees at that time. To make sure we don’t lose time, she did already order the stem cell transplantation team to restart preparations for the procedure. But she did make it clear that this is “just in case”, and that she does not know yet whether she will go through with this. That all depends on her further research, the results of Monday’s blood tests, and perhaps even yet another bone marrow puncture.
Today: Saturday, May 9, 2026
It is now two days after this week of hanging between despair and hope. A blast percentage that indicates that the regular treatment did not work for me. The hope of perhaps being a test subject for a promising new drug. The last tick mark that did not come, meaning I won’t qualify for that project. And then the utterly surprising reduction of the blast cells.
I have to be realistic. I know that my odds are far from good. I know that I might not live to see the next fall. Heck, perhaps not even the next summer.
Which is extra weird because I just feel fully healthy. I enjoy life. I work. I do my daily walks, which probably makes me healthier than I have been in a few decades. But there is a number on a petri dish that tells the specialists that, unless successfully treated, I will die within a few months, or even weeks.
That is really hard to grasp. And difficult to accept.
But it’s still the harsh truth. Difficult or not, I have no choice. I will have to accept it.
But not yet as a certainty. There still is hope. I don’t know how much. But the lower blast percentage is a silver lining. And even without that, then there is still the alternative chemotherapy. Granted, 1 in 6 is not much, but it’s still better than zero.
Monday, May 11, 2026
This will be an important day for me. Again. With, probably, new surprises. Again.
I don’t know what will happen. I don’t know what my hematologist will tell me. I will have to wait, and so will all my loved ones, my family, my friends. And, now that you have read this, you too.
The only thing I know for certain is: life is short, and life is not guaranteed. I may die soon, but frankly, so will you. Your odds might be better. But things happen. People die all the time. Today might be your last.
So please, everyone, seize the day. Think about what matters to you in life. Work so you can live. Live so you can tell your loved ones how much you love them. And make sure to enjoy life. Enjoy every day, every minute. Do what makes you happy – as long as that doesn’t interfere with the happiness of others.
