We went to “Sprankenhof” a farm where we could pick berries, cabbages, tomatoes, pretty much everything that was in season. It was great fun for the kids and we have some fresh fruits and vegetables.

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Updated chart

I updated the treatment schedule. Hopefully, apart from adding the final dates, this chart will not be altered anymore. Of course, I can’t help but think about the fifth of October when I will be admitted to the VUmc, for the strongest course of chemotherapy, followed by another long period of isolation.
A difference to my stay in the Spaarne hospital is that the VUmc has isolated the whole hematology ward, and because of that, patients can roam around and interact with each other. A downside is that most rooms are shared, and have beds for two to three people.
The fifth of October is three weeks from now, so I am trying not to worry about what is coming too much, and enjoying the days at home.

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Not the Philippines

On Sunday evening we biked to the Engelermeer, a place where lots of people hang out on the beach or have a swim… when it is warm and sunny… Thomas thought that even though it was windy, cloudy and cold, it was a good time for a swim. I guess spending a month in the Philippines somehow must have skewed his view on the Dutch climate.

After about ten minutes in the water, reality, and the shivers, struck. Click the picture for a youtube video.

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All you can eat sushi

When the immune system is compromised, and not working optimally, certain foods need to be avoided. Raw cheese, unprocessed muesli, raw nuts, raw meats and raw fish are amongst the things that should not be consumed, as they most likely contain bacteria or fungi. Sushi from an ‘all you can eat’ restaurant is probably leading the list of things you should not eat when your immune system is suboptimal. Sushi is Thomas’ and Nils’ favorite restaurant food, and they had been asking when we can go out for dinner again. Last week the hematologist told me that with my immune system I could eat everything again, and I need not pay specific attention anymore until my next treatment.

Therefore, yesterday evening we went out for sushi.

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Lymphoma disappearing, MS active

It was a long day yesterday. When I came home, I went to sleep after I kissed the kids good night. Therefore I didn’t take the time to update my website to talk about the visits to the hematologist and neurologist yesterday.

The MRI scan showed a further significant reduction of the lymphoma; they almost disappeared which is excellent. At the same time, however, it also showed five new active small MS lesions. That is a lot, and even though not acutely worrisome, it raises the question again whether some addition should be made to the last part of the treatment. I often asked about this in the past, so I found it disappointing that they had no direct answer to this. The neurologist will discuss this and call me next week.

The hematologist talked about the rest of the treatment. The last part of the treatment will take place at the VUmc, and as it will include the not often used ThioTEPA as a chemo-agent, they will keep me at the VU for the entire trajectory. The length of the hospital stay will roughly be the same as the one in Hoofddorp, so around four weeks. They will start on October 5.

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I wrote before about how I was feeling incredibly tired after the chemo’s given at the Jeroen Bosch ziekenhuis. Little did I know, that things could feel a lot worse. Since I am back I feel exhausted, and I don’t get much done. I hope things will get better soon.

[update 5 Sept.] I notice that some times I even can’t gather the energy to write longer blog posts. Apart from being exhausted I also walk badly and pretty much all of my MS symptoms are worse, probably due to me being so drained from the chemo. Last Friday I had a new MRI scan made, and the outcome will be discussed with me and Adrienne coming Thursday. Only then we will have a better idea what the status is of the lesions and whether or not this exhaustion and worsening of symptoms is due to the after effect of the chemo, or something else. Just like last time I don’t know what to expect, or what to hope for from the results of the scan.

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I returned home on Monday evening after the stem cell harvesting. It feels great to be home again. The kids are very happy and so am I. It is strange how soon everything feels ‘normal’ again. Maybe you know that feeling when coming home after a long vacation. Just a few moments home and the past month moved to the background. It almost feels like nothing happened and things are back to everyday life.
I still am weak and tired, but hopefully, that will improve soon. This Friday, the 1st of September, I am going to the VU for an MRI scan. On the 7th of September, I will be informed about the outcome. There will be nervous times ahead, but for now, I will enjoy being home.

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38 million

This morning at 7.15h I left the Spaarne Hospital to go by taxi to the VUmc for the stem cell harvesting. I arrived there at 7.50 am. I waited until 8.30h to be finally helped by a nurse. They started with a count of CD34 positive cells, CD34 is a protein that is expressed on the cell membrane of stem cells. With a count they make a guess whether stem cell apheresis is going to be successful that day, they also check whether the number of red and white blood cells are high enough and whether you have enough platelets. In my case, the nurse told me that she had never seen a stem cell count that was so high.
I started the apheresis around 11.30h. To attach me to the machine she stuck a big IV needle on the inside of my left elbow (the cubital fossa) from which blood is sucked out into the machine and an IV on my wrist of the right hand through which the blood is pumped back. They took the wrist here because it allowed me to move my right arm (pumping back blood requires a smaller vein).
The complex apheresis machine essentially is a big centrifuge. Based on the mass it filters out blood plasma and stem cells. I was attached to the machine until 15.30h. In that time they filtered twice my blood volume (in my case about 12 liters of blood went through the machine). I found the procedure painless. I was unhooked from the machine and had to wait for the stem cell count of the extract so that they would know whether or not I would have to return for another harvest tomorrow. They would need 2 million stem cells (I think this is per kg of body weight).
At 17.05h the nurse informed me that they had more than enough. The yield of my extract was a staggering 38 million stem cells, an amazingly high amount.
I finally could take the taxi home to see the kids, whom I hadn’t seen for four weeks since they left for the Philippines on the 1st of August.

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Leaving the room

My blood values have sky rocketed (due to the G-CSF injections). I am now free to roam around and go outside. A liberating feeling after 23 days of isolation in my room.

I created a video to show the room in which I spent more than three weeks in isolation. In my room, the only sound was the hissing of the air pressure control system.

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I experienced some difficult times here in the hospital. The first days in the hospital I was sick of the chemo. Adrienne and the kids were in Manila, and my family and friends were far away in Noord Brabant. During these first days, when feeling sick, in my new, unknown, small, and closed room, I felt nervous, restless or perhaps depressed. It was a feeling that I had never experienced before. This mental state amplified me feeling sick.

On the 8th of July, I wrote about how I disagreed with a comment I saw on a friend’s Facebook page. The saying in the post read: “Be brave enough to hold on to the hope that life will be beautiful again.” I ended the blog post by writing “Nonetheless, waiting for better days does not require bravery. I believe that finding a ray of light on even the darkest days is a real test of one’s spirit.”

Even though I still agree with my statement, I have learned that the ray of light on some dark days can be the thought that this negative state is temporary. Thinking back, keeping in mind that this state is common and will pass, is what helped me to get through those days.

Even now that I am feeling better, the thought of being able to go home soon again and hug the children again after almost a month makes me happy.

Perhaps there is something to the saying “hold on to the hope that life will be beautiful again.”

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