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

Home (Introduction)

Phase 2

June 1st 2019

Back home!

Yesterday I came back home after being hospitalized for nearly three weeks. I know I sounded like a wise ass sometimes in my previous blogs, but the past three weeks were not funny AT ALL. To me they were heavy as hell and what was written down in the information folders is absolutely right: I still have a long way to go.

Everything started with me being hospitalized at the 13th of May. A day filled with all kinds of admin stuff. I had to give blood twice, there was a photo-shoot of my chest and I had to fill out a lot of of questionnaires. After that it became simple: jump into the hospital bed and start behaving like a patient.

The two following days I was hooked up to the Melphalan IV. That stuff is so poisonous that you also receive a lot of NaCl through an IV, so you’ll be able to get rid of it by peeing it all out ASAP. On top of that I had to cool the mucous membranes in my mouth by eating a lot of crushed ice. The day after the Melphalan chemo, May 16th 2019, I received my own stem cells back. That was a piece of cake.

And then the misery started…. I will not spend too many words on it, but it was a period of about ten days, filled with being constantly nauseous, having diarrhoea and throwing up a lot. The mucous membranes from my oesophagus to my ‘venturi’ were totally ruined by the Melphalan. I lost 6 kilos, I ad fever and I talked rubbish while having fever. All because of two reasons: the Melphalan and the lack of white blood corpuscles. At day 8 after the stem cell transplantation, there were no longer white blood corpuscles measurable in my blood (<>

And then there was May 25th 2019. Day 9 after the stem cell transplantation. I woke up and I felt a little better. Huh? Surprise. By noon, the nauseous feeling was back, maar by that time I did have half a day in which I felt better. Those few hours were mine, no matter what. On Sunday, the same happened but the nauseous feeling started around 1500hrs. On Monday I had to give blood again and guess what: white blood corpuscles were measurable again. Not much (0,2) but they were there! And I started to feel better again. The only thing that was not funny was a severe pain in my back. The neurologist came by and after an MRI-scan it appeared to be an intervertebral disc that suffered from some wear and tear. Had nothing to do with my disease. Nice timing, although I personally thing the hospital bed was the cause of this.

Last Wednesday was the first time the word ‘discharge’ fell. That sounded like music to my ears. And then the cardiologist came by. It appeared that I had been given medication that was of influence on the so-called QT-interval of my heart and thus could lead to rhythm disturbances. Well, I told him that in February that I suffered from this. What a clown to come up with this while me being discharged is the topic of the day. Thursday evening they made an ECG and they did the same on Friday morning. No difference, the QT-interval remained too long. I probably had to stay one day longer. Fortunately, I was told yesterday at 1500hrs I could go home! What a relieve. How nice it is to drive into your own residence. To see that your neighbours have put up ‘Welcome Home’ texts on your house. It’s great to sit on your own couch. Just great!

And all the postcards I received. All the Whatsapp messages that kept coming. We are just surrounded by fantastic people! And there is one I want to mention especially: my love Bianca! Every (!) day she drove from home to Utrecht and back to see me. And some visits lasted only 15 minutes because I was just too sick. Thanks a million tiger!

I’m not there by a long shot. I’m still as weak as hell and have almost no muscle power. Walking for ten meters, means I have to rest for 15 minutes. There’s a lot I have to do to regain my strength, but that will be a battle I’m looking forward to.

To be continued….


May 10th 2019

Stem cell transplantation re-scheduled

After a planned last visit at the UMC, before the start of the whole show next week, it became clear that the transplantation will not take place on May 17th, but on May 16th. Right, (almost) everybody is aware of the change of date.

To be continued....

May 5th 2019

Re-scheduled agenda….

There were quite some hectic moments in the past week. Two scheduled appointments and an announcement that didn’t make me happy at all. In my own language: I have only one week for flightsimming left.

We arrived right on time in the UMC on April 29th for the scheduled stem cell pheresis. Although all desks were still closed, I was received as planned at 0815hrs and taken to the room where the whole charade would take place. I had to lie in a bed and everything was made ready for starting the IV. That part was not going quite as planned. After three mishaps, the nurse decided it had to be done under the guidance of ultrasound. With ultrasound, the IV was in place in no time. In the meantime they were successful in retrieving a tube of blood. After roughly one hour, I had an IV line, the results of the blood were available and the question whether I did have enough stem cells could be answered. I had to have, based on my body weight and volume, at least four million stem cells in my blood. I did have ten million stem cells…….which explained the pain in my bones. Time for the second IV line. A non-flexible needle. That meant that I couldn’t bend my arm. Well, I could if I wanted it per se, but that would hurt a bit…. Thanks to the nurses from the blood bank, who possessed quite some humour, the stem cell pheresis went quickly and flawless. After three and a half hours I was ready. They had enough stem cells for the transplantation. Deadly tired but satisfied, we went home.

On Thursday May 2nd I got the results from an intermediate blood test that startled me. Although the Free Light Chains Lambda were within ranges, the amount of M-Protein had doubled from 3 to 6 g/L. Within two weeks after the end of the Velcade cycles and only one week after the Cyclophosphamide treatment. That was very quickly. And so I rang the hospital. I received a call back on Friday. The haematologist also thought it was rather strange that the disease returned so quickly after ending the induction cycles. Result: the stem cell transplantation, originally scheduled for May 27th, is now brought forward to May 17th. Hospitalization in the UMC is scheduled for Monday next week, May 13th. That rapid response by the UMC does feel all right and apparently it is necessary, but it’s no fun, I can tell you that.

Last Friday I also had to undergo a colonoscopy. That was a result from the tumour which was discovered earlier in June 2018 in my appendix. I got some light sedation and apparently I talked and talked to the nurse and doctor while they were busy. Later on, when I was fully aware of my surroundings again, I wondered what kind of complete rubbish I had talked about, as I couldn’t remember all of it. Anyway, the result were good and no anomalies were found. Good.

Yesterday we had a wigparty with friends of us. They had also provided an awesome lunch! The wigparty was something we just had to do now that I'm bald. We had tears in our eyes with laughing. I love this kind of nonsense!

And that means that the next piece in this blog will be written after the stem cell transplantation, as nothing special is scheduled in between. So:

To be continued….


April 27th 2019

One month to go

Me and my big mouth…..In my last report I told everybody, with a little pride, that I had no side effects of the Cyclophosphamide treatment, but man, did that backfire on me. Fortunately I didn’t suffer from being nauseous, but I got tired as hell, got quite some headaches and also pain in my bones. In the aftermath it appeared that I really had underestimated this treatment. By now, my hair has disappeared as well.

As soon as the side effects of the Cyclophosphamide treatment disappeared somewhat, I had to start with administering Neupogen to myself. Neupogen is used as a growing factor for stem cells. After all, Monday will be the big day as the harvest of stem cells is planned. For now, I have to administer Neupogen to myself twice a day through a syringe. There is really not much to it and besides that, I was able to view the technique during all those Velcade shots in the past. So it is rather painless, but I’ll admit that I was curious about how it would be to stick a needle into my own body.

So, Neupogen mobilizes one’s stem cells. Stem cells are mostly in your bone marrow and there is only a small amount present in your blood. One could harvest stem cells from the bone marrow but that would take a number of bone marrow punctions and I can tell you from experience that this is not something that will make you happy. Another way is to get them out of your blood. To do so, it is necessary to first get those stem cells into your blood, as there are normally not enough present, just to prevent you from being hooked up for days to a dialysis machine. Neupogen shots will give the production of stem cells a boost. Such a boost that the stem cells are more or less pushed out of the bone marrow and into the blood. And then it is much easier to get them out of the blood through a dialysis machine. The harvest of stem cells is called stem cell apheresis and for me that is planned on Monday. If necessary, it will be prolonged on Tuesday as well.

Neupogen has an endless list of side effects. For now I am mainly confronted with two things: my body is retaining water again and I suffer from pain in my bones. The latter is, according the specialists, because of the fact that the large amount of stem cells that are being made are pressing against the periosteum, before being pushed into the blood. For now, the pain in my bones is confined to the lower part of my back and to my hips. It feels like I have severely thrown out my back. Every move I now make, is accompanied with quite a number of moans and groans.

From today on it is exactly one month I’ll have to go until the planned transplantation and countdown has started. Until then, I will be harassed with all kinds of medical tests because of the tumour I had in my appendix, which started this whole charade. But let’s first do Monday.

To be continued….


April 19th 2019

Dentist, Cyclophosphamide and oral hygienist

Phase 2 has started and in the first week there where some major items on the agenda. On paper that is. In reality it was quite different than what we expected.

It all started with a visit at the dentist in Schaarsbergen. I’m not really into dental visits and I know I’m not the only one. Especially because I’m convinced that I have a hole in one of my teeth, the seize of a soccer ball, seize 5 (I know, I’m exaggerating) especially because I’m still using blood thinners. I don’t feel much like swallowing blood all day. Anyway, with all that in my mind, I’m leaving for the dentist on the first day of the second phase. After a photo-shoot of my teeth, it’s my turn. I’m explaining my situation regarding the stem cell transplantation and he immediately recognizes the problem: time. There is not much time to get a set of teeth up and running in six weeks, in such a way that it will not give any complications for a stem cell transplantation. On the other hand, he doesn’t know the status of my teeth yet. If I would be so kind to lie down in the chair. I’m giving him an extended explanation of where the hole should be, but he doesn’t seem to be that much impressed. Even worse, according to him and the x-rays, I don’t have a hole in my teeth. He takes one of his iron tools, taps on the tooth involved and after I have descended via the TL-lamp back in the chair, the dentist explains that there is a piece of tooth bone which is exposed. He will give me an appointment with an oral hygienist in Arnhem. Great. I’d rather have a hole in my tooth.

With an appointment for the next week (yesterday), Bianca and I left for the UMC yesterday. It was Cyclophosphamide day and we were told that this wasn’t something to look out for. There were quite some side effects and although not everybody suffers from the side effects, most people will. And the forecast of running through my house, looking for a toilet, with my left hand in front of my mouth and my right hand against my venturi, wasn’t really something I was waiting for. But it is what it is and there was no way escaping this part of the treatment. Besides, this Cyclophosphamide will cause my hair to fall out. That doesn’t really bother me. At all. At 0845hrs I’m hooked up and ready to start. I’ve seldom experienced a more boring day. Bianca stayed for some time in my room, but after some encouragements on my behalf, she left. Eating a sandwich, buying a book, smoking a cigarette, enjoying the sun. Very wise. In the end we got lucky and were able to leave 90 minutes earlier than planned. With one advantage and with one disadvantage. The disadvantage was that I was also given Dexamethasone which gives me a fat head because it makes my body retain water. The advantage was that I had to drink at least 2 liters of water for the next 48 hours and for someone on a tight water regime, that is a little party :-). Eventually we left for home, waiting for me to become nauseous. Nothing. Except for the fat head, no single side effect the UMC promised, popped up. Promises, promises, promises :-)

This morning I went to the oral hygienist in Arnhem. Something I wasn’t too happy about as well. It all started really good. Apparently, half Germany had decided to celebrate Easter in the Netherlands, resulting in the A12 being totally clogged. My planning could be tossed away and I made a phone call that I would be somewhat late. But it wasn’t too bad. Two minutes passed ten, I was inside and immediately I got a questionnaire. Halfway, the oral hygienist picked me up and I did my story and gave some extra explanation. The treatment took 45 minutes and was rather painless. Unlike the oral hygienist in Apeldoorn, few electrical instruments were used and I even got a compliment about the status of my teeth. And the exposed tooth bone would heal in time. It was eleven o’clock when I was outside again and in my car. Only to realize after five minutes that it might be smart, when on water retention medication, to visit a toilet before getting into my car. Which was underlined again when I drove back onto the A12. It looked like half of the Netherlands, as some sort of retaliation, decided to celebrate Easter in Germany. And I can tell you that 27 kilometres is one hell of a distance then!

And in the end, three appointments I wasn’t too keen about, turned out to be three windfalls and I succeeded in making quite a story of a rather uneventful week.

To be continued….