April 11th 2019
The end of phase 1
Well then, that’s that! The induction cycles are done and I must say that time passed very quickly. I can’t complain about the way I feel right now. I haven’t been nauseous for a single day, but my haematologist promised me that’s about to change. Or not. That’s what’s told whenever I get a new type of medication. You might experience the side effects, but then again, you might not.
The last two weeks were rather uneventful. My blood has been checked again and it appeared that my kidneys are still working like they should, M-Protein has dropped from 4 to 3 g/L and the Free Light Chains Lambda have dropped from 41 to 23 and are within the min/max range for the first time. Doc happy, Bianca happy, I’m happy. I will enter phase 2 with good spirits. And this is where things are getting more serious. First I will have a week of ‘nothing’, but on the 18th of April, I’ll be on an IV for a whole day. Cyclophosphamide is the magical liquid that will be given to me. It’s a form of chemotherapy that should kill some more bad cells. The downside of this medication is that it also kills the good cells, so my physical defence will drop further and the chances of picking up some kind of infection will only increase. Furthermore, it’s very aggressive stuff and one should drink a lot to prevent irritation of the bladder wall. And what wasn’t I allowed to do? Right. The list with side effects is almost endless, but for now I just expect not to become a ‘member’ on all listed side effects… What will be almost 100% sure is that I will get bald. I’ve decided not to wait for that and on the 23rd of April, I will go to my hairdresser to get my head shaved. I could do that myself, but it has also something symbolic in it. To wake up every morning to check my pillow, being afraid that, while in company, my hair will drop spontaneously, no, I will take matters into my own hands.
So, I will have one week of relative rest, before phase 2 really starts. Although…. I do have to visit the dentist tomorrow to have my teeth checked. That’s also part of the treatment in phase 2. If there are hidden inflammations, they might cause serious problem when the stem cell transplantation will take place and I have no defence at all. For now, phase 1 is (almost) finished. My heart and kidneys made it so far. Moving on!
To be continued….
March 27th 2019
Hectic day with good news in threefold
At 0815hrs we were in our car heading for Utrecht. That is, we were standing still most of the time. For some reason there were a lot of other people who wanted to drive around a bit and normally I don’t mind, BUT NOT WHEN I’M ON THE ROAD! Right, I got that off my chest. Of course we made it well in time to be at the UMC to have a cup of coffee before we had to be at our appointment with the haematologist. And she had some good news, as there was no restriction at all to perform the stem cell transplantation. The cardiologist had given the green light and the blood values showed no strange numbers. And I can tell you, that’s quite a relief. Somewhere in the back of my mind there was this little voice whispering ‘what if…’. The next thing the haematologist asked me was if I had enough medication left and after she printed a new recipe, she asked me if I needed more medication. I listen to these kind of questions in stunning admiration. For a second the thought crossed my mind to opt for the family pack of Viagra pills, but again I decided to keep my big mouth shut, being a good boy… What she did give me was a recipe for eleven syringes I’ll have to inject myself with in the near future. I got less happy about that.
After our appointment with the haematologist, we had an appointment with the stem cell transplantation nurse. She gave us a briefing of 75 minutes and we discussed all aspects from the preparation till the actual transplantation. And yes, I was allowed to execute a dry run with the syringe. How much fun that was….. To make sure we wouldn’t get out of paper in general at home, we received a binder with all kind of information about the transplantation and the advice to read it all. Of course I will do that, although I’ve read a lot already, but better read it twice than not at all. Anyway, after these two conversations we were both rather exhausted. Time to divide some tasks. Bianca took care of picking up the medication while I went on my way to have some blood drawn and to have an ECG made of my heart. We could’ve done that the other way around, but that would not have helped my curing process in general, I guess….
After I was finished, it appeared that it was just Bianca’s turn to be helped at the pharmacy. And right at that moment I receive a Whatsapp message that one of my colleagues has become a dad. Good news again. The weather outside may be as grey as hell, this kind of news does make you a little bit happy. With an icebox full with syringes and a box with pills under my arm, we enjoyed a delicious lunch at Paresto in the Military Hospital. Afterwards: time to go home, as it was already 1345hrs. As the laboratory at the UMC works in a rather effective and speedy way, I was able to view the results of my blood donation on the web portal. That was good news for the third time: all values that really matter were within limits and that’s only good. Even the values regarding my kidneys and those are truly important. Good! I’m on schedule and I’m willing to keep it that way. Next stop: next Friday. That will be my second to last Velcade-shot.
To be continued….
March 22nd 2019
The bell for the last round
Two weeks have past and today we went to Utrecht in order to get a Velcade shot. We make those trips a bit special, including lunch and we visit some shops and run some errands. What really comes in handy, is the fact that I have to take my Dexamethason on these days. And that stuff gives me a boost so I automatically become more active. First we had an appointment with my haematologist. She was satisfied with the results. Good. If she is, I am. M-Protein had dropped from 7 to 4 g/L and the Free Light Chain (FLC) had dropped from 50,15 to 41,49 mg/L. That seems only little, but the hard requirement at the end of the four induction cycles is that M-Protein is around 2 or 3 g/L and the FLC should be at least half the original value at the start of the cycles. I started with a FLC of 123,41 mg/L so that goal is already achieved. For now I will have to carry on for the oncoming three weeks and complete the induction cycles. It was just like a beautiful holiday: time flew…..yeah, right….
My overall condition is deteriorating continuously. I don’t necessarily agree with that all that much, so I tend to pay visits to my hometrainer on a frequent basis. My heart rate is around 90 then and sometimes I go so incredibly slowly that I’m glad that the device is standing on the floor, otherwise I would fall over. Anyway, it keeps me in motion which seems to be good. Slowly but steady, I’m now able to synchronize heart and mind regarding the biking stuff. I’m capable of finding a certain cadence that works for me. All of a sudden it seems there is a third position between ‘Fully on’ and ‘Totally off’. I call it the ‘Cancer position’:-) Keep on smiling folks!
A week and a half ago, I hit the jackpot. I picked up a virus or bacteria and yes, there was the long promised respiratory infection. How nice is that, not. I didn’t necessarily get all choked up, but my feeling of well-being went down the drain. Everything you do makes you so incredibly tired. Just a walk to and from the kitchen (and I live in a normal house, not some exclusive villa) is enough to literally drop into the couch. Completely worn out. Fortunately that situation is gone. Well, except for one little thing. Now my sinus is playing tricks. And I’m reminded of that, every time I want to pick up something. It just shows how the physical resistance is being affected by the chemotherapy, although I would’ve believed that in advance anyhow.
For now, it’s just a matter of getting three more Velcade-shots and swallow a sh*tload of pills for the oncoming 20 days in order to finish the last cycle. And then the sh*tstorm will start for real, as I will be prepared for the mobilization and the harvesting of stem cells, occasionally pimped with some heavy duty chemotherapy to increase the revelry. The oncoming week I will learn all the intimate details about all that. For now I’m on track and that is all that matters now.
To be continued….
March 8th 2019
Becoming what you’ve always hated: from truly important via big deal to the third Velcade-hot in the third cycle
Right. It is rather safe to establish that the chemotherapy is taking its toll. Completely against my will, the chemotherapy is now also definitely breaking down the good cells in my body, resulting in a huge exhaustion, without me having to do anything for that. The big advantage with this exhaustion in combination with the Thalidomide (Softenon) is that I’m sleeping like a rose. Just for what it’s worth. Downside to the exhaustion is, that whenever I’m trying to solve some Sudoku puzzles on my tablet, I tend to doze off sometimes. The irritating part is that the muscles in my arms also get weak, resulting in the stylo which I’m holding, to drop on the tablet and erasing, changing or manipulating otherwise every solution I came up with earlier. When I wake up and want to continue, I’ve asked myself regularly how I could come up with some pretty stupid solutions. Well, now I know…..
Okay, after this confession, let’s go back to today. We are getting better and better in driving to and from Utrecht. Bianca will have 3200 km of road behind her after the sixteen Velcade-shots. Today she touched 2200 km, with me riding shotgun and looking in full admiration to the environment I normally cross while going to work, but without noticing it as I’m watching the road. Okay, I’m digressing….
This morning we first had an appointment with the female internist of Healing arts. Last Monday I had the second follow-up check regarding the Goblet Cell Carcinoid which was found by coincidence in July 2018 in my appendix. That follow-up consisted of an ultrasound of my intestine and I actually could read the results the same day on the website ‘my UMC’. The main conclusion of the radiologist was: no abnormalities in the liver. I did hear this earlier from the two people that examined me, but the doctor is the one with the final verdict. This was actually also the first encounter with the female internist, because I had the first follow-up in the hospital in my residence. We talked shortly about the whole charade. In other words: a Travelling Guide on how one goes from an Appendicitis via a Goblet Cell Carcinoid to AL Amyloidosis and Multiple Myeloma. So…. At the end of this whole story, the doc asks me if I still had any questions. “Ehh….yeah, only one. What are the results from last Monday’s follow-up?”. She had completely forgotten about that in all her enthusiasm. The look in her eyes when she realised this was worth a ton of gold. Of course we had a good laugh about it, after which she gave me a thorough explanation and the answer I hoped for. I know I can expect whatever I think is right, but I’m still not a doctor. Later on, Bianca and I talked about it and concluded that it’s actually strange to say. When my oncologist told me on August 27th 2018 that there were no metastases, I was King of the World. Today, after the second follow-up, everything is still on the good side regarding that Goblet Cell Carcinoid and to be honest, I couldn’t care less. Something bigger came in between…. On the other side it’s a fact that a worsening situation is the last thing I’m waiting for in my current state.
After this appointment with the female internist, we walked straight to the reception for the Velcade-shot. Imagery. I most probably have put an image in your head of two people hurrying through the corridors of the UMC to their next appointment. Stumbling would be a more appropriate description in this situation. I sometimes wonder who has to hold on to who. Me holding Bianca in order to avoid the appearance of being drunk, or Bianca me, because we are walking so bloody slowly, she might fall over. Anyway. I had an appointment at 1315hrs, but I was taken care of at 1210hrs. You all know by now that the Velcade-shot doesn’t take a huge amount of time and after being shot up, we walked via the pharmacy to our car. At 1450hrs we were home again. I really crashed on the couch and I noticed that the energy meter is in the deep red. What helps on such an occasion, is two friends visiting us and make me laugh more than once, and would you look at that, the meter is leaving the red. Not that it is in leafy green now, as orange is the maximum for now, but nevertheless. Energy transformed to Will to Fight. Cool!
In the meantime I do realise something else, and beware, I’m making a confession here! I’ve always looked with a bit of horror to people that were very ill, sitting in wheelchairs, on an IV, pale, bald and completely helpless. In short: truly ill people. Why? Because I have a hard time dealing with their suffering that I cannot take away. In a normal situation I would make some sick joke just to make them smile a bit (like ‘common, come along, keep up the pace’, or something along those lines) but it often seems that this doesn’t help if people are that ill. And this powerlessness translates itself into horror. I know you can all feel it coming…… I’m going to experience a huge lesson in humility the oncoming months…. And I sincerely hope that someone will say to me that I have to ‘come along and have to keep up the pace’. Actually, I already know who will do this :-) There is nothing so frustrating when noticing that, because you are ill, some people are putting you, unaware of what they say, in a corner called ‘terminal’. I usually let these remarks pass by before saying that this corner is a very busy corner. As everybody is standing there…. Anyway, what I want to say is that being ill doesn’t mean one loses his or her humour, or interests, or one can’t think straight anymore. The tempo is just different, but on the inside you’re still the same.. I still love my family, good food, half litres of beer, loads of humour, airplanes, reading, sports, etcetera. Some things are not allowed for now, but I enjoy those things that are. You really appreciate the so-called small thing and I sincerely hope I can hold on to that for a very long time. So that lesson in humility is something I deserve apparently and rest assure, the next time I will make that joke to the man or woman in the wheelchair. If the joke has to be about keeping up the pace, is open for discussion, but ignoring because it bothers me, is definitely wrong. And that was something I had to get off my chest!
Next Monday I’ll get the last Velcade-shot of this cycle and then ten days to go to the start of the last and final cycle.
To be continued….
February 28th 2019
Blood test result and almost half way the induction cycles
It took a while for me to write something, but actually I have three good reasons for that. First of all I just had little to tell and in such a case, it is not very useful to write a lot about nothing. Secondly, I wanted to wait for the first blood test results, because I then actually had something to share. And finally, I just didn’t feel all that well and in such a case you don’t feel like sitting down behind your laptop. And today, I have good day.
But, first things first, the blood test results. Yesterday I went to the UMC and Mitchell was kind enough to take me there. We had some good and relaxed conversations, mainly about the driving skills of our fellow road users:-) It must be quite an ordeal for him, being 6 feet 7, to adjust his walking speed to mine. And believe me, that’s really slow. I realise that every time I walk through the hospital and am overtaken by people in their midst eighties or so. Anyway, the blood test results came in yesterday and today through the website of the hospital and they looked good. The blood count is good and the kidneys are still working like they should. Today I’ve received the results of M-Protein and the Free Light Chain (FLC) Lambda. Both dropped again, which is good. They didn’t drop as spectacular as three weeks ago, but they dropped. M-Protein went from 12 g/L to 7 g/L and the FLC Lambda from 66 mg/L to 50 mg/L. Eventually M-Protein should not be visible in the blood and the FLC Lambda should be under 26 mg/L.
For the last week and a half, my body has build up quite some fluid retention. That is being caused by all the medication I have to take in combination with the Amyloidosis that has attached to my heart. The consequences of all this is that my heart has to work a lot harder to get rid of the excessive fluid. Because the Amyloidosis has attached to my heart, my heart has problems filling itself with enough blood after each heartbeat. If the heart also has to work a lot harder because it has become more stiffer due to the Amyloidosis, that will eventually lead to shortness of breath. And that my friends, is not funny, I can tell you that. There are moments that I’m actually gasping for air. Just sitting on the couch, doing nothing. How bizarre. Eventually I was given medication for getting rid of the excessive fluid and that just works fine. Let’s just say that I can see my ankles again… Besides the shortness of breath, I’m also really tired. Also a result from all the medication. Normally one takes medication in order to feel better shortly after. In my case I take medication that makes me feel worse and is ruining my body from the inside. All for the higher cause.
But…..I still can’t complain. Because a lot is going alright. Sleeping, eating, not being nauseous and more things alike. I knew things would eventually get worse and it appears that this phase has now started. But despite all that, I can till laugh every day. Let’s just start the third cycle tomorrow!
To be continued….
February 15th 2019
Reality-check: Luck with a twist of (played) drama on a bed of humour
And yet another week has passed! Slowly we’re counting down the days and weeks of this second cycle. Nothing special happened actually, in the past week. Although, the specialty is in the beautiful and unexpected things. and man a lot happened on that pitch.
If you cut off all the medical bells and whistles, the Latin terminology, the rides to and from Utrecht and the little inconveniences from this whole charade, only one thing remains. And that is all those reactions you get from the people around you. I received some this week that made me silent. No, relax, I’m not gonna mention them all. But the visit we got from friends last Saturday and a Whatsapp message I got to see last Sunday, gave me such a boost of positive energy, that I went completely silent and felt a happy man. It might sound strange, but in moments like that, it actually doesn’t matter what disease you have. If former colleagues show sympathy after more than 25 years, that does something to you.
What is also doing something to me, is when I have to sit in a car for 75 minutes in order to have 2 acts performed at the UMCU, both lasting no longer than 20 seconds each, after which I can go sit in the car again to toddle back home. For 75 minutes. That more or less muffles my ‘hormones-of-joy’, so to say. On a more positive note, todays measured blood levels were within the normal frame which hadn’t happened since June last year. Made me all silent :-)
Last Monday I had to report sick at work ‘officially’ and I have to say that was ‘a thing’. I stated I was no longer capable of even working at home, just because my body is too sick to focus and stay awake. It confronts me with myself and the fact I cannot do the things I want. Ouch! The shortness of breath literally takes my breath away. I’m quickly really tired and my muscle is degrading. But that’s it, I will not complain. Just because I have no pain, I’m not nauseous, I still have my appetite, I sleep like a baby, I still have all my hair (big deal) and, most important of all, we can still laugh! And besides that, things will get worse. If I start to complain already by now….
Sometimes this whole dog and pony show makes you stop taking it all too serious. And you start to behave like that. At least, I do. Let’s see if I can turn one of the next Velcade-shot moments into some sort of costume drama :-). I do look forward though to the wig-party one of our friends has planned the moment I will lose my hair. Can’t wait! Yep, that’s my kinda humour. But first I have to get this cycle’s last Velcade-shot next Monday.
To be continued….
February 8th 2019
Second cycle, medication and…. Greetz
And there it was, that little milestone today: I’ve started with the second cycle. This morning I first had an appointment with my haematologist and after that I had to ‘pick up’ my Velcade shot. Bianca was kind enough to pick up my extra medicine, as I’ve received five extra pills in the last two days. I guess that some doctors have some stock and bonds for that chemical waste. All in all, a rather uneventful day at the hospital, but a milestone nonetheless.
Yesterday I had to pay a visit at the cardiologist, to get the outcome of a 3D ultrasound scan that was made last Tuesday, to see if there was amyloid on and in my heart. Well, the cardiologist was very clear about that: there is amyloïd in and on my heart. Besides that, he concluded that part of my shortness of breath is caused because my body is retaining water, but fortunately he had medication for that. And then he had medication to counter the side effects of that first pill. And while he was at it, he asked me if I also wanted some medication for my cholesterol that was too high. At that point I was thinking: “go for it, now is the moment to upgrade your medicine cabinet!”, but I decided to swallow all those smart-ass remarks and just nodded ‘yes’ like a good boy. After this visit, which was pimped with a little bit of blood donation as well as an x-ray photo shoot, I got back in the car with Henry, one of my best friends and, absolutely, one hell of a mainstay in these times (you didn’t see that one coming now, did ya’ my friend? :-)) . Our ride to and from Utrecht passed very quickly, mainly as we had some very good conversations.
By this time, I have to consume 14 pills, powders and a Velcade shot on a top day. I might get out at 0300hrs this night to see if I’m already casting some green light. Anyway, when I got home, there was a nice surprise waiting for Bianca and me. Two boxes from the gift company Greetz. Beautiful flowers and a beer box. And yes….there was no name of a sender. If there’s a reader of this blog who recognizes him- or herself in this, please identify yourself. We want to say thank you!
And now it’s time to see how the second cycle will develop. I’m still pretty quickly out of breath and walking the relatively long distances in the UMC will cost me a bigger effort each time. I know there will be a moment that I will have to pause halfway and I sincerely hope I can postpone that to at least the third cycle.. Most important conclusion of the past days: the first cycle has hit the bull’s eye spot on. My M-protein has dropped from 20 g/L in December to 12 g/L last week. And the same goes for the Free Light Chains Lambda: from 123 mg/L in December to 66 mg/L last week! Two major indicators for my diseases that were way too high.
To be continued…..
February 4th 2019
World Cancer Day and the end of cycle one
Right. How appropriate. Writing an update on World Cancer Day. A real party. And Bianca didn’t even congratulate me today;-)
Well, that was the first cycle. Three more to go. Normally, I would start with the second cycle tomorrow, but my haematologist wants to see me first before we start with the second cycle. And that will be next Friday. Let’s just say that being a good doctor doesn’t necessarily mean you’re also a good planner…
I can’t complain about the past three weeks, I guess. I did have some complaints of which being short of breath was the least funny, but all in all it was a period of finding out how I would react on the chemotherapy and what I can do and can’t do. What I should continue is living my life and have fun along the way. What I shouldn’t do is trying to improve myself every single time I get on that exercise bike. My heart doesn’t quite approve of that. But it is so tempting to cycle through the world using the app Kinomap.
Although I won’t get a Velcade shot tomorrow, I still have to go to Utrecht. They want to draw some blood and the cardiologist wants to make an echo of my heart. Just to see if there is a difference with the echo of December and above all, to see if the Amyloidosis on my heart has expanded. I will get the results on Thursday from the cardiologist and Friday I will have that meeting with my haematologist, after which I sincerely hope I can start with the second cycle. We didn’t mess around with all those pills and powders yesterday evening in order to prepare for the next cycle. By the way, we didn’t get past day 9 as the first boxes of medication came back empty. I did ‘order a new stash ‘ this morning at the Haematology Department. And when you’re surfing the net in order to find out what all these medicines do, you also find out that you are sticking a huge amount of chemical misery in your mouth every day, at a ridiculous cost price. The absolute winner is the Velcade shot. 3.5mg Bortezomib (Velcade) will only cost €17.280,= ($ 19.761,=). 3.5mg! You would spontaneously donate a ‘coup de grace’ to the whole pharmaceutical industry. The nerve….. But to end this Eyewitness Report on a more positive note, fortunately my insurance is covering these costs. If they wouldn’t do that, they would have a big problem. I intend to continue eating all that medication stuff:-)
To be continued.....
January 26th 2019
Every milestone counts….
Yesterday and today, I’ve past two mini-milestones. Yesterday I’ve received my last Velcade-shot and today I took the last Dexamethasone pill of this first cycle. That cycle is by far not finished, don’t worry, it just takes 21 days in total, but, if everything turns out as planned, I don’t have to go to the UMC till the first week of February. Nice and quiet. I do wonder if my shortness of breath will improve though, because that starts to annoy me. My mind is shouting for some hometrainer activity, but my body doesn’t want to comply. And I really haven’t got a clue on how to synchronise these two…
Apart from my shortness of breath and the fact that my heart is not really sending a comforting message, I am not complaining. I’m currently enjoying a a nice coke and a tray of potato chips, I haven’t been sick one single second and I’m sleeping very good. I try to stay in shape and yesterday I managed to do a small virtual ‘Rotterdam cycling tour’ (in a slightly more suitable tempo) and I even went out with Bianca to walk the dog of our neighbours.
There are not many things at the moment that give me physical energy. Which is quite reasonable as these diseases, in combination with the medication, just will prevent this from happening. What is possible though is getting mental energy. And mental energy transforms into Will to Fight. And there are a lot of things I get mental energy from. First of all there is my family, but that should be clear by now. But also some silly, slow-speed-cycling for 20 minutes on my hometrainer, not having my heartbeat go beyond 90 BPM. Or like this evening, virtual flying in my simulator with my flightsim buddies from the USA, Mexico and Australia. In a multiplayer session with Teamspeak for communication, we fly from point A to point B according a flightplan one of use has created. And even though I’m hoarse as hell and not able to say much, it’s cheer enjoyment to do this together with them and to watch our acrobatics. A bunch of ‘old men’ wearing “Wannabee Pilot” all over their torso….:-) And every once in a while (5 times a day) I’m receiving all kinds of funny movies and pictures through Whatsapp. Humour is miraculous. That’s why I like it so much :-)
And so we slowly march into the third week. Yep, every milestone counts.
To be continued…..
January 22nd 2019
Velcade and Zometa, but above all…..snow
And there we went again. Leaving home in beautiful weather, only to see it decrease by the mile when we were on our way to Utrecht today. Halfway I looked up from my eBook, only to find the world completely white, both the road as well as the air. It was snowing. I’ll definitely get back on that later, don’t worry.
In the UMC Utrecht I was going to have my third Velcade injection and a Zometa IV. Zometa is used to increase the strength of the skeleton. Actually, things went quite smooth in the hospital so there is little to report from that point of view. Almost all visits where I have to get a Velcade injection, are pretty uneventful. It’s walking in, have a coffee, get my shot and leave.
Leaving (nice bridge)….. Now that was something else today. The weather was terrible and all in all it took us 3 hours and 3 minutes to get home. Some people are really afraid to drive in the snow and think this is a good opportunity to fight that anxiety, only to end up in a traffic-jam that apparently freezes their ability to use the throttle/brake/clutch-configuration in such way that it will result in actually moving their car (preferably off the freakin’ road). Okay, whooo-sahh……relax….. Right, okay, that’s of my chest! :-)
The first week of my treatment has past. What is there to say about how I felt a week ago and how I feel now? Is there a difference? Yes there is. Straight forward, I’m in a less good shape, the medicines are kicking in. If you think about the huge pile of chemical sh*t I have to swallow every day, that shouldn’t be too strange. I experience some problems with breathing as if I have to do an effort to get air in my lungs. Furthermore I start to experience slight signs of polyneuropathy, which means that my central nerve system is affected by the medication, resulting in tingling fingers and toes. Most annoying is that I’m feeling high as hell all day (pretty awkward for a guy from the Netherlands, I know:-)) and that I’m hoarse as hell to a level that talking is becoming an issue (nice and quiet, Bianca would say:-)). Tomorrow I have another visit with my doctor and we will discuss all these issues.
But let me be clear, in no way I’m feeling sad or disappointed. I knew it wasn’t going to be easy and I know it will get worse than this. I just go by the day. And it’s not all bad! I still exercise. Albeit at a level where I should ask myself if it's really smart to hold on to.
Sidestory. My body has a two-way switch: Full On and Totally Off. Nothing in between. So last Sunday, I thought it would be nice to exercise a bit and was on the hometrainer for 40 minutes cycling the livin' sh*t out of myself. Not wise. Not smart. Plain stupid, I agree. But I always want to make my next achievement better than the one before. And since I am not only preparing for the oncoming months, I am also in the recovering mode from my first cancer from June, the Goblet Cell Carcinoid. Now try to find a nice modus operandi for that! That just takes too long for me, so I get up that hometrainer and switch on. Full On....
But nevertheless, I still exercise and will keep on doing so as long as possible. Furthermore the bleeding of my gums has stopped. The predominant pain in my lower back has gone. I haven’t felt sick or nauseous for one day. I enjoy every meal with great pleasure (especially those typical Dutch ‘frikandellen speciaal’). Also very important: my heart rate (HR) is getting back to normal and my blood pressure (BP) still belongs to that of a young God :-). Up till now I was able to go to work and actually do something constructive (which is so damn important). Of course all my collegues are monkeys, but that probably makes me the rock-sitting A-male. If you're as lucky as I am, having a crew that actually knows what responsibility is and acts accordingly, than you can only be a proud Head of Office. Their interest in my personal situation is heart warming.
But ABOVE all, I realize how lucky I am with my wife and son. Bianca is going through her own ordeal and she tends to take a step back in order to give me all the attention. She always reminds me of a song by Roger Whittaker, from 1982 called "The Wind beneath my Wings", also performed by a Dutch artist called Paul de Leeuw, "Vleugels van mijn Vlucht". There is no better way to describe my lovely wife. And I didn't have to think hard to find this analogy.
And then there is my son. He lives on his own and has to cope with it in his own way. When I asked him a few days ago if he wanted to drive tomorrow, he was ready to drive me immediately. He'll drop everything instantaneously and be there to do what is necessary. It is not only taking care of his 'old man', it is also about having a special father-son moment where the two of us can share our somewhat awkward sense of humour. So, you see, I have no reason to complain AT ALL.
Like I said, tomorrow I’ll have to go back to Utrecht to visit my doctor. My son Mitch will drive me, as we decided that Bianca would accompany me on all the ‘Velcade trips’, and I thought this would be a good moment for the doctor to get to know the rest of my family. I hope the two of us can keep it to normal proportions, as we tend to make a joke about almost everything. There was something with making a first impression……
To be continued…..
January 15th 2019
Sedative, hyperactivity, rubbers and beer
So there we went. At 1015hrs we went on our way to the UMC in Utrecht and yes, we were ready for the start of my chemotherapy! Cycle 1 of 4, day 1 of 84.
On time, in my case way too early, we arrived at the radiology section as they wanted a nice thorax picture. That had confused me a bit as at first nobody had told me why I had to go to the radiology section. Was it for an MRI scan? A CT scan? A thorax picture. I had to find that out for myself and as I tend to confuse others, rather than to be the confused one, I thought it was payback time.
After a short waiting period, my name was called and I was ordered to take of my shirt and sweater. I decided this would be the moment. Stepping into the big room where the machinery was waiting for me, softly humming, I put up my most pityfull face, trying to look as scared as a five year old, and asked the nurse when I was going to be sedated. A very, very short second I saw that look on her face. Hell, it wasn't even a full second, maybe a nano-second for all I cared. But I saw it. Confusion. Believe me, I enjoyed it and when she came to her senses after that very short time, I explained 'the why' of it and we both had a good laugh. Nevertheless, in less than 5 minutes, I was ready and Bianca and I left for a cup of coffee.
At 1300hrs we were ready to receive the information briefing for the entire chemotherapy. Before that, I thought it was more than necessary to tell my story first. The reason why I chose to leave our regional hospital, what had happened there, the fact that I, as a patient, had to point out high protein and amyloid levels to the doctors, that I wasn't sure about being taken seriously as a patient, etcetera. That alone took around 45 minutes and fortunately the nurse understood my situation and where I was coming from. Her briefing was pretty clear. She called 'things' by their name. I guess this wasn't the first time she did this. And she did a good job.
Much to Bianca's approval, I was told that some medication could make me hyperactive. At that point, Bianca thought it was a good moment to come up with the idea of me re-decorating our bathroom, including doing the tiles and plumbing. Right. I guess she thought it was her turn now to start confusing the people around her.... The nurse countered that by not reacting verbally to Bianca's brilliant idea and continued her story with saying that we should use rubbers while having sex. For a short moment we looked at eachother. Confused. But this time the nurse was serious, while I had to bite my lip, in order to stop myself from giving some snappy remark.
After the briefing, the 'big moment' was there: I was going to be 'chemotherapized'..... The idea was bigger than the actual action: I got 'a shot' in my belly, which I didn't feel at all, and I had to take a pill. The nurse asked me what I wanted to drink and of course I said that a beer would be just fine. No response. When she came back, she had a glass of apple juice.....including a small layer of foam. Apparently I was not the first wise ass coming up with this remark...
Anyway. After that, we had to go to the hospital pharmacy and we got a shitload of pills. As one medicin was on late delivery, I'll have to pick that one up tomorrow. It was time to go home. We made the necessary phonecalls to be followed by more phonecalls tomorrow. We had things to do. Like having diner and sorting out pills. Only to discover that one medicin had another dosis as ordered and one medicin wasn't even on the list. A late phonecall to the hospital cleared all this.
And finally, I wanted to type this Eyewitness Report and add some pictures, only to discover that the pills are now kicking in: I'm currently as high as a Dutch flag on Liberation Day. The first day of chemotherapy is coming to an end. A mentally important day, that's for sure. Time to call it a day.
To be continued.....
January 9th, 2019
"This disease will eventually result in your death."
Well, that was a clear statement of my doctor. Left no room for misunderstanding. And I like that. That is, people being clear to me, not necessarily the message they spread. Anyhow, not all was bad.
For example, the weather wasn't too bad when we left home and drove to the University Medical Centre Utrecht. Traffic was light and actually we were hoping to hear when the treatment would finally start. Way too early, we arrived at the medical centre and after a good old fashioned cup of coffee, we went to the hematology section.
My doctor explained again what they had discovered: around 60% of malignent plasmacells (should be less than 5%) in my bone marrow, amyloidosis fibrils in my colon and with a suspicion of them also being present in my heart and kidneys. As I'm getting out of breath faster than I used to, these fibrils might also have found their way to my lungs. The little bastards. Life expectancy will be 4 to 8 years.
Luckily we heard what we wanted to hear: treatment will start next week and I will get the toughest one, including Autologous Stem Cell Transplantation (ASCT). Lucky me. Best results are achieved with this ASCT, but I have been warned that it will be tough. But since I'm a young guy (from a medical perspective), the medical team expects my body should be up to that. Nevertheless, it is always possible that halfway the treatment, adjustments have to be made, as my body might be too sick to stand up against the treatment.
The whole process consists out of three phases:
1. A 12 week chemotherapy with injections and a shitload of pills;
2. The mobilisation and harvest of stem cells followed by high dose chemotherapy for killing the majority of my bone marrow, and eventually the stem cell transplantation;
I did ask my doctor if I would be able to continue exercising sports. Her laugh was answer enough to me, but she said I should continue my sports as normal. And just wait to see how my body would respond. Right...no Tour de France for me this year, I'm afraid.
Most important was her optimism about medication currently being developed . Although this disease is uncurable, apparently there are a number of new medicins under development that might stop the disease from returning as quickly as it does now. My biggest question was if I would have enough time to see the light of that and she was optimistic. We'll see. For now one thing is clear. I will have to undertake numerous steps in order to fight this and the first one is next week. So as of Tuesday, I will be in 'Beast Mode'!
To be continued...
December 17th, 2018
Great. Just great.
We just heard the outcome of a series of medical exams I underwent since the last couple of months. So, we had to shake our heads and wondered how we did end up here? Beware, because what I'm gonna unfold here might seem rather farfetched, but it's actually the truth.
It was late June when I experienced a slight but distinctive pain in my right lower belly. Being myself, I thought I could end this with a painkiller. Wrong. Eventually I ended up that same day in the ER with an acute appendicitis. "Great, just take it out so I can go home", was my first thought. And guess what? They did! And I went home. Roughly a month later my surgeon called me and informed me I had an appointment that Friday at the hospital. The pathologist had discovered 'something' and I had to be informed about that. So we went to the hospital. Both totally nervous, because in the meantime, our general practitioner had informed my wife Bianca, due to miss-communication, that I had cancer. In a regular telephonecall. She thought we already knew.... Can you imagine how it must have been for Bianca to have to inform me that I had cancer?? In the hospital we learned I had a very rare type of cancer, a so called goblet cell carcinoid. And that required a surgical operation in order to remove 1/3 of my colon, a so called hemicolectomy right. And so there I went to the hospital, the hospital people did their thing and after two weeks it appeared that there were no metastases! Theoretically I was completely clean! Can you imagine how lucky I felt? There was only one small problem of minor importance: after the surgical operation, the catheter was removed, let's say, a bit rough (the stupid b*tch [pardon my French] who did that must have thought she pulled out the electrical wire from a vacuum cleaner), causing me to pee blood for more than three weeks afterwards. And while every doctor said this was normal, I thought it wasn't and went to my general practitioner. For weeks I had to turn in blood and urin samples at the hospital. Fortunately I was able to see the results at the hospital's website. And guess what? I noticed that the level of protein in my urin was way too high (should be less than 20 mg per L, mine was 944 mg per L).
Anyway, making a long story short: I made it very clear that I wanted to see a specialist (nephrologist) at the hospital. After 6 weeks of medical exams it appeared that I had high levels of so-called Free Light Chains in my urin, too much plasmacells of one type in my bone marrow and during the removal of my appendix in June the pathologist had discovered a shitload of amyloid covering my appendix (which I already knew and had asked some questions about). The conclusion was easily made after this: AL Amyloidoses and Kahler's Disease. Two for the price of one. Lucky me...
The conclusion was made at December 17th, while at June 28th it was clear I had too much protein in my urin and the pathologist had found amyloid covering my appendix, two major indicators for at least a follow up for Amyloidoses. It took my hospital almost 6 months to come to that conclusion, while I started asking questions after less than one month after the first surgical operation in June..... It may be clear that we've left this hospital and as of the day after tomorrow we rely on the medical care of the University Medical Centre Utrecht. One of the two Expertise centres in the Netherlands regarding AL Amyloidosis and one of ten Knowledge centres regarding Kahler's Disease (Multiple Myeloma).
Just for the record: around 110.000 people worldwide get Kahler's Disease each year, around 50.000 people worldwide get AL Amyloidoses each year and yes, my colon cancer was a goblet cell carcinoid and 600 people worldwide get this type of cancer each year. I hope everybody can understand we bought a lottery ticket for the New Year's Eve Lottery!
According to several doctors, and thanks to my own vigilance apparently, these diseases were discovered in an early stage. So my next visit at the hospital will be in January next year and hopefully I will start with the chemotherapy shortly after that. And although my wife, my son and I needed some time to digest this news, the three of us can still laugh, make fun and enjoy life. And believe me, that is so important. It doesn't feel like my problem, it feels like our problem.
People tend to say: "Merry Christm......oh no. Sorry about that. Eh....I don't know what to say." We can absolutely understand these reactions, but really, believe me, we had a great Christmas, laughed a lot and had a really good time! Life goes on, it doesn't stop! It continues and we enjoy it just like we did before we received the bad news. And we sure as hell will continue to do so after the bad news! I still fly around the world (virtually that is), I still go to work (!) and I still enjoy a delicious glass of Heineken. We will see what the future will bring as we walk this unknown path.