March 13th 2021
So, how about me?
Exactly one year ago, I wrote the last update hoping it would take a long time before writing the next one. Especially because that would mean that nothing would have changed in my status. First of all: did something change with regard to my status. Well, actually not really. Or maybe it did. I’m not sure yet, but after one year today should be a good moment to give an update.
For starters, I still work full-time. Well, that’s a good start. Furthermore, I’m still able to do my workout twice a week, so that’s also a good thing. I can still enjoy a drink or a cold beer and there’s no complaining there either. Best thing of all: I’ve discovered a new hobby in the past year. Flying sailplanes. Man, what a great way to spend your time. It’s obvious that I should’ve started with that 40 years ago. The sum of all these thing makes one think that things are going okay and they actually are. Nevertheless things are going very, very slowly a little less than a year ago. A little bit faster out of breath, just a tiny bit more pain in my muscles and things just cost me a little bit more effort than a year ago. In the past year, my cardiologist found out that I have an irregular heartbeat with atrium fibrillation and I still loose too much protein through my urine. All the other blood values are remarkably solid though, with regard to Kahler’s disease and amyloidosis. But all in all, I’m still far away from the point at which I think I have the right to complain.
Recently a kidney biopsy was taken from me, because of the loss of protein. That was really cool! Not. I gave the nephrologist the opportunity to explain to me why that biopsy should take place and then I started to ask a few questions. When she told me that I had to stop with blood thinners, I asked her if she thought it was a good idea, starting to mess with medication another specialist had prescribed, without consulting him. I had a point there, she told me. My God. Fortunately for me, I’m a patient with a big mouth, but what if I was a 75 y/o timid man? I would have probably stopped the medication after which I could have ended up with a blood clot in my brains and train my tongue muscle the rest of my life while trying to steer the wheelchair I ended up in. Or something along those lines. Nevertheless, the biopsy went very well. Funny side note: I had to ask Bianca to leave the hospital shortly after the biopsy. We were have too much fun, which made me laugh all the time and I didn't want to get a internal bleeding. It didn't help and I started to urinate blood after three days. Fortunately it appeared to be a blood clot in my kidney, but once was enough for me. Anyway, I’m on an extra pill now, because it appeared that there was amyloidosis in my kidney. Yeah, duhh, I could’ve told that before that charade started. Now the big question is whether the pills will bring down the protein loss. If so, everything is okay, if not, then the 2nd line treatment will start. The next phase in my overall treatment. I’d rather postpone that as long as possible, but that’s out of my hands.
And so I live my life like everybody else. Even in Corona time, where I hope to receive my first Corona shot in two weeks. But again, as long as I can still do what I always did, I’m a happy man and you will hear no complaints from me whatsoever. So far the score up till today. If there is any more news, like starting the 2nd line treatment, I will be here more often. Until that time: so far, so good.
To be continued....
March 13th 2020
Steady as she goes
Things are stable for the moment. That’s the sole reason for me not posting so much. Let’s keep it that way for as long as possible. My last visit to the haematologist showed a good result. Blood values are OK and I feel good. Less funny was the fact that I told the haematologist that two days earlier I felt a slight pressure on my chest. Ten minutes later I found myself at the HighCare unit of the ER. Eventually it appeared that there was no problem, but the advantage of this situation was that the cardiologist saw with his own eyes that my heart missed a beat on a regular basis. So I hadn't been talking bullocks the past 18 months!
Anyway, I’m able to go to the gym twice a week and I’m still tuning up the weights and my personal demands regarding my physical fitness. Although I must say that I realize there’s a limit and I’m nearing it.
Regarding the bloodvalues, the Light Chains were just above the maximum limit with 28 mg/L and the M-Protein dropped again to 5 g/L. The funny thing about these last results was that I received them, while I was standing under the Space Shuttle on the carrier Intrepid in New York City. I was visiting this magnificent city with Mitchell and as long as I’m able to do these things, I’m doing fine. Washington/Miami was on the planning to visit with Bianca, but Corona was the big spoiler here as it caused President Trump to close the US borders for European citizens. We’ll just postpone it.
And that’s the reason why I will not write every month from now on. As soon as the situation changes, I will pick up the keyboard again. There’s no use in writing the same stuff every month over and over again.
So, this Eyewitness Report will be continued, but I really hope it will take a long time!
To be continued….
February 2nd 2020
Well begun is half done
Well then, with the previous good news and the holidays still fresh in our memory, I thought it was nice to make a good start in 2020. And so I did. That is, I went to work on January 13th for a full day. And went home with a satisfied feeling. Back home though, I started to get the shivers, got very tired and got more ill every hour. And so I ended up in the hospital in Utrecht the next day, with a 40 degree fever having caught the RS-virus and a beginning pneumonia. Great. Not really. Because of the chemotherapy, my with blood cells were in the minority and not able to beat the RS-virus. And then one ends up in hospital in some isolation room all by my lonesome. Chemotherapy was stopped for the moment. By now I’m back on those happy little pills (as Bob Ross would say). I started to miss my little blue and white friends…
Fortunately, I’ve only spend five days in hospital and as they put me on antibiotics immediately, I was free of fever after three days. The rest of those five days, I had to stay in hospital because I had to finish the antibiotics treatment and there were some blood samples being cultured as well. Anyway, Bianca and I had our little distraction for January. And lying alone in a room is not really contributing to a good mood, so I was glad I could go home. But, recovery afterwards went pretty good and since recovering from a virus infection goes in a more rapid pace than recovering from a stem cell transplantation, you won’t hear me complaining.
Especially not after the next blood test. Results were good. Although M-Protein had risen from 5 g/L to 6 g/L, the haematologist explained last time that the difference between 5 g/L and 6 g/L was hard to establish. As far as the Light Chains were concerned, there was good news: they dropped from 33 mg/L to 24 mg/L and were right in between the brackets where they should be. So…
So, I have to return next month. Because of the short visit to the hospital, some dates have been moved resulting in an intermezzo of one month, but everything is going well. I must hold on to this situation for at least one month, since I have a trip planned with my son Mitchell to New York at the end of this month. And I had to cancel this trip last year, so… Up till now, everything is going very well.
To be continued….
December 15th 2019
Miracles never cease
We’re two months further in time and last week Bianca and myself had a moment in which we shook our heads. A lot more has happened and not all has to do with me being ill. Or maybe it does.
After we left the UMCU mid-October, after having received pretty good news since I was expected back not earlier than two months later, we thought indeed that it would take two months for us to see the haematologist. Wrong! Two days after our last visit I caught a virus infection and was back on the ER for a total check-up in order to find out if I had pneumonia. Since they didn’t build the hospital especially for me and because of some emergency quickies that occurred, it took four and a half hours for me to leave the ER to go home…. But, I had no pneumonia. I did have some sort of flu virus that could cause some respiration problems for the oncoming two weeks. Great.
But it was mid-November indeed when I got finally rid of the virus and could breathe normally. If you do have some respiration problems due to the disease I’ve got, a virus infection of your airways is the last thing you need. Besides all this, I had to return to the UMCU for an echo of my heart for the cardiologist and an echo of my liver for the oncologist for a follow-up regarding the colon cancer I had. The results of the last one were very quickly available: nothing special to report. Except that I had collected a rather large amount of gallstones. Thank you. As long as it doesn’t bother me, nothing will be done about them. Right.
In the meanwhile we celebrated Bianca’s 50th birthday and the two of us went for a vacation. Not all things are evolving around my illness fortunately. Immediately after our return from our vacation, I had to report to the hospital for a blood donation for the haematologist and we got the results from the echo made from my heart. That it took the cardiologist such a long time to make up his mind, didn’t really surprise me. I’ve looked at the echo while it was made and it was one big mystery to me as well. Anyway, the condition of my heart was good as it looked pretty much the same as the previous time (standing still is progression in my case), but there was some anomaly on the beating of my heart. I seem to have a serious cardiac conduction disorder. Well I can feel sometimes that things are not the way they should be. I get all choked up sometimes. Further research must show if it’s really serious.
And then there was our head-shaking-moment last Wednesday. The haematologist asked me how I felt and I told him I felt good but was out of breath sometimes. He looked at the results (M-Protein was stable at 5 g/L and the Light Chains had dropped a tad to 33 mg/L and were also stable) and told us that his expectation was that I would sit there in 2 to 3 years in a much better condition. Bianca and I got silent. I tried to tell him that our expectation was that in 3 years, I would be quite near the exit, but he answered with a clear “no way”! It took a while for us, after having left his office before we looked at each other. Did we really heard that correctly? It took some time for us to get our heads around it, but it felt like getting some extra time together. And that made us very happy of course. Even if next time things look worse, this message took care of us having a wonderful Christmas and a very Happy New Year! At least a whole lot better than it was last year. In two months I will have the next appointment.
For now I would like to wish all followers a very beautiful Christmas and a very Happy New Year. May all that is good come on your path in 2020!
To be continued….
October 21st 2019
Nothing special to report
Last week we went to the UMC in Utrecht again. I had donated some blood last week and it’s always nice to show some interest when it comes to the results. Our visit at the haematologist was not really special. To our surprise the M-Protein had dropped from 6g/L to 5g/L. That’s always good, because it was 6g/L since before the stem cell transplantation and it is not supposed to be traceable in ones blood. The Free Light Chains (FLC) were up to 37mg/L. The haematologist called that stable. Or I should want to make a big issue out of 6mg/L. No, never mind. The haematologist was that satisfied that she wanted to see me in two months. And so we left the UMC, satisfied and happy.
Furthermore I celebrated my birthday last week. Bianca had made a surprise party and last Saturday one after another entered our living room. I had a fantastic party and to be honest, I have had some beer and whiskey. I really didn’t expect that some ten months ago. I feel good, so we hold on to that. Next eyewitness report will be in two months!
To be continued….
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…..it 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….