"If you follow you will see, what's beyond reality"


"If you follow you will see, what's beyond reality"

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Phase 3

September 20th 2019

Normal can be fun as well

Actually there is not much to tell and on the other hand, there is. Life starts to become a little bit normal again and I must say that I like that a lot. Last Wednesday we went to our haematologist. Blood values were almost identical to the ones of last month. At first I thought I was looking at the wrong values. There was little to talk about at the haematologist office. All was stable and that was good news!

A month ago, one of my best friends took me to a match of our favourite football club: de Graafschap (they play in the second national league). I had a great evening! Good atmospherics, great company and the match was won by our team. I did notice that there is work ahead on the conditional level. Although I did walk the stairs on the stand without any problem (34 steps, because for some reason we had to sit all the way at the top of the stand), something went not quite as planned when de Graafschap scored 1-0. Halfway my cheer, I went silent. No more air in my lungs. At that point anybody would become silent :-). It did make me laugh though.

In the first week of September, Bianca and I spent our vacation in Port Zelande (a holiday park in the south western part of the Netherlands, amidst the Deltawerken). Although I myself am more into all-inclusive, 5 stars, white beach, blue sky and air conditioner, that’s not gonna happen for a month or two. But….we had a great week! Laughed a lot, enjoyed great food en enjoyed the surroundings. Zeeland is a beautiful province but doesn’t get the recognition they deserve (technically, Port Zelande lies in the province of South-Holland). I always say: it is just like the Achterhoek (not a province but a part in the east of the Netherlands), but then with water. A personal highlight for us, was the fact that we promised each other before the treatment started, we would come back to the Oude Strandhuis (Old Beachhouse) in Zoutelande, after the worst of the treatment would lie behind us. And that’s exactly what we did!

Last Monday was one of the big milestones I planned for myself at the very beginning of the treatment. Me going back to work. Although it’s only for 2 x 4 hours a week, I could wear the uniform again, walk amidst my colleagues and make a lot of noise in the building again. It really felt good.

So, is there nothing to complain about? Oh yes, there is. I hardly sleep at night. For 5 weeks on a row now. No more than 1 to 1,5 hours a night and I can tell you that this is really wearing me down .The cause of all this is medication. It causes a dry skin that starts to tickle. And because of that I can’t fall asleep. Not even with some pretty heavy sleep medication. I really hope that I will break through this, as a good night sleep is very welcome by now. But apart from this, I feel good, my condition is improving and I’m enjoying this every day!

To be continued….

August 23rd 2019

Stability all around

Right, we just received the results of my latest blood tests and they were good. The haematologist was satisfied, so we are satisfied. The Free Light Chains were a little above the maximum value, but the so-called ratio looked good. Anyway, another exciting moment turned out to be positive.

The beginning of the month was, let’s just say, special. Bianca and I went to some good friends of us in Soest. Just as we entered Amersfoort, the haematologist called. The week before they had checked my blood to see if I had a pulmonary embolism as I was rather quickly out of breath. The results of that blood test were a bit high and I was ordered to go to the ER in the UMC in Utrecht at once. Pffff…… I dropped Bianca off at our friends residence and drove on to the hospital. As soon as I arrived there, I was taken into a room and was thoroughly questioned by an ER nurse to find out what the problem was. Next thing before I knew, I was hooked up to an IV and they pushed me through the CT scan. The outcome was that nothing out of the ordinary could be found and I was discharged. By the way, if I’ve just painted a picture in which you guys think it all took around 30 minutes, I’ll have to disappoint you. The whole charade took four and a half hours….

Furthermore I’ve noticed that the strength of my muscles is improving. By now I can do 12 push-ups, 22 sit-ups and now and then I think I’m on top of the world. That feeling will disappear quite rapidly, as soon as I’m ‘mounting’ my hometrainer. Without any problems I can train for 20 minutes. That good feeling changes as soon as I’m lying on the couch in the evening, in the well-known ambulance position and want to get up. At that moment every muscle hurts and it then appears I have muscles on places I didn’t even know there were muscles. And although nothing is wrong with my muscles, as soon as I start to walk a few meters, I’m automatically out of breath. As if I was a retired racehorse that had to perform one more time at the olympics…..

The only thing that worries me at the moment is that my heart is constantly missing beats. That gives a very strange feeling in my chest. It doesn’t hurt or anything and I’ve been examined very thoroughly where nothing could be found. Other than that, I’m feeling just fine. Smiling every day, sometimes because of myself, I’ve noticed that humour is very important. I’ve got good friends surrounding me and even some of 40 (!) years ago. In short, I give myself an A in the current situation (I’ve received grades much lower when I was at school and I was happy with those then).

To be continued….

July 24th 2019

Good news from the battlefield

Right, I received the outcome of my second blood test today. Actually, I already knew what those results were, but I need to hear from the haematologist whether those blood values implicate whatever I think they implicate. I’m a person that wants to be sure no matter what, and due to that I tend to be a perfectionist. Thinking I was right, the truth was that I was wrong. The reason for that is clear: I’m doing this for the first time and my haematologist is doing this for the thousandth time. If I had to place a bet on one of us, it wouldn’t be on myself….

So, what happened was that in my blood the M-Protein was still 6 g/L. With a healthy person, the M-Protein is not traceable in blood and knowing this, instead of thinking “good, it didn’t rise” (like the haematologist does), the perfectionist in me thinks “mmm… didn’t drop…”. Something similar happened regarding the Free Light Chains. Last time they were 9,5 mg/L and now they were 24.5 mg/L. That’s within the margins albeit just. The haematologist thinks “good, those Chains are restoring after the transplantation and they tend to rise and drop regularly anyway”, the amateur-haematologist in me is thinking “WTF! They are 2,5 times as high as last time!”

So this is a good example on how cold figures are made warm by my haematologist with years of experience. I’m not ashamed for my thoughts. I just learned, and like everything else in life: every day is a schoolday. When it’s about myself, I tend to be right on top of things. Anyway, the blood part is going okay. The same goes for my heart. According the cardiologist, my cardiac condition had improved enormously. But as I’m still suffering from shortness of breath from time to time, I tend to start a discussion with the man…..which I loose. Obviously.

Furthermore I’ve started with physiotherapy fitness. Normally I tend to have a big mouth but after one hour of physiotherapy, my mouth isn’t that big anymore as I’m thinking I actually am missing some essential body parts. The first time my physiotherapist wanted me to start an exercise with a weight of two kilo’s. I looked at her and laughed a bit. After one repetition, the weight was replaced by one of one kilo and my smile had disappeared. I’ve told about the push-ups I wanted to do last time. Well, I’ve reached an all-time record…..1! So there is progression. Apparently it takes some time before the body is completely recovered. My physiotherapist put it nicely: the oxygen transport system in my body is completely re-inventing itself after the transplantation. And therefor, the waste products in my body are sometimes stuck in places, where they don’t belong. That gives me pain in my body. For 24 hours a day. But the pain is not unbearable, just uncomfortable. Only just before I go to sleep, I take some painkillers and believe me, the hours just before going to sleep and just after waking up, are the most happy hours I experience so far:-).

Nevertheless, things are going okay. Let’s keep it that way! On to the next month and in the mean time keeping myself busy with the physical recovery. And above all: keep on smiling!

To be continued….

June 26th 2019

Almost home for a month and the first blood test results

Right, the first month at home has almost past. And what a month it has been. The first week at home was sheer hell. I had no power in my body at all, was nauseous every day, everything I ate or drank came out immediately and my weight dropped faster than a brick in thin air. I’ve lost more than ten kilo’s now. After six days of surviving at home, the doctor at the UMC thought it was enough and summoned me to come to the hospital. Bianca drove me and as soon as we arrived, she put me in a wheelchair. For those who can still remember my confession of March 8th 2019 in this blog: I was the one now, who was literally hanging in a wheelchair. I wasn’t too conscious of my surroundings and one of the few things I can still remember was Bianca talking in a loud voice to me: “Stay awake! Stay with me!” Eventually it appeared that the blood values were recovering in such a rapid pace, that even the doctor was surprised. So that was good news! Quite some weight fell of my shoulders. They wanted to keep me in the UMC though, and give me tube feeding in order to make sure I regained some strength, but I was able to negotiate. I went home because my blood values were good, but I got liquid power food. And that helped. At the moment I’ve regained some strength and this path is going upwards, I can smile again and make fun again, so that’s good. Two Saturdays ago, things were less funny. I did have a very high heart rate for a couple of days and I contacted the UMC. I was ordered immediately to report myself at the first aid. After a one hour drive, was immediately put in a trauma room and they connected me on all kinds of machines, inserted an IV, planned a photo-shoot at radiology and even a CT-scan late in the afternoon. Final conclusion of a long day: I most probably had been hyperventilating for a few days. Cause: on Thursday I had an unpleasant telephone conversation with the company doctor. Who made all kinds of rude and unpleasant remarks, which I will not repeat here. But it were those remarks that got me hyperventilating. Fortunately that was ‘all’. A weak body was made mentally weaker by a bully. A doctor for Pete’s sake.

Today we went to the UMC. It’s exactly one year since this all started with an acute appendicitis. Last week I had donated some blood to be tested and the results showed that the important M-Protein was still levelled at 6 g/L. That didn’t make me happy. My haematologist was somewhat more relaxed about the outcome and she said she wanted to start with the so called ‘maintenance treatment’. So let’s do that. This treatment will consist of taking a pill called Lenalidomide every day for 21 days. Than 7 days of no extra pill. And this schedule will repeat itself every 28 days, just as long until the disease starts to pop up again. That might take 3 weeks and it might take 3 years. Nothing can be said about that. And in that week that I don’t have to take the extra pill, I’ll have an appointment with my haematologist to check the M-Protein. And in this pace, we will have an ‘exciting moment’ each month.

At the moment I cannot say that I’m feeling better today than I did yesterday. But I can say that I feel better this week compared with last week. The build-up of muscle strength is going very very slowly and I don’t agree with that. The day before yesterday I wanted to know how many push-ups I could make. Some seven months ago, I was good for at least 30. Bianca had already gone to bed and I decided to try it out and ‘assumed the position’. I locked my elbows for a moment to get in the most comfortable position, being followed by slowly bending my elbows for the first push-up. At least……that was my intention. That ‘bending my elbows’ came about with the speed of light and my face smacked against the wooden floor. Great, not! There was absolutely no power in my muscles. I didn’t even got to do 1 push-up! I tried to get up by pushing up only my torso: not a chance. I had to roll over on my back in order to get up. One illusion down the drain, but one idea popped up. I have to go to the gym, because I have a very long way to go. But I will travel that road! No matter the bullets I have to bite.

To be continued….


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