Alles goed - All Good

Goede bloedresultaten. Tumor markers weer naar all time low - 7 - reeds eerder gehaald in januari na skiën. Ik heb een week extra rust gekregen voor mijn handen. De pijn was nu continu; op een schaal van 1 op 10 een 4; eigenlijk was het een beetje ondraaglijk aan het worden. Ik kan mijn vingers amper nog strekken, er komt pus onder de meeste van mijn nagels vandaan, mijn huid is enorm dun, mijn handen dus enorm gevoelig en mijn vingers begingen op die van ET te lijken; met een extra dik laatste kootje....

Een week extra rust om ze te laten helen. Dit komt reuze goed uit want dan ben ik pillen vrij bij het skiën met mijn zusje en vriendjes. Vandaag wel aan de bevacizumab. Voelt altijd goed om iets tegen die verrekte kanker te doen. Vrijdag we vertrekken naar Zwitserland. Ik heb er reuze zin in.

Het blijft raar wat voor spel je hersenen met je spellen voordat je een uitslag hebt. Zondag ging ik vroeg naar bed omdat ik maandag chemo zou hebben. Toen ik het licht uitdeed en klaar was om te slapen bedacht ik me dat er iets niet klopte. De Nurse practioner waar ik een afspraak mee had werkt toch niet op maandag.......heb ik maandag wel chemo? Effe checken...niet dus. Lekker, Ik heb me vergist. Ik had een companion geregeld die mij om 730 zou ophalen, ik had het ook op mijn blog geschreven.... Chemo maakt meer kapot dan je lief is.....mijn hersencapaciteit gaat wel heel snel achteruit. Ik moet hier iets aan gaan doen.

Ik was gisteren reuze verdrietig van de spanning maar had toch uiteindelijk een goed gevoel. Oene en Eline waren al om 6 uur wakker vanochtend, ik ook, heerlijk met hun een uurtje in mijn bed gelegen. Wat is het leven dan toch mooi.



Stay strong

I will beat the statistics

Berend


Good blood results. Tumor markers back to all time low - 7 - I previously reached this level in January after the skiing holiday. They have given me an extra week of rest for my hands. The pain was now continuously, on a scale of 1 to 10 a 4; to be frank it starts to be unbearable.  I can barely stretch my fingers, there is pus coming from under most of my fingernails, my skin is very thin, my hands are  extremely sensitive and my fingers start to resemble that of ET, with an extra thick last phalanx.

An extra week of rest will let them heal. This good because I will be pill free when skiing with my sister and friends. Today I still go some bevacizumab. It always feels good to fight that damn cancer. Friday we leave for Switzerland. I'm really looking forward to some skiing.

It remains strange what game your brains plays with you before a blood test/CT scan. Sunday I went to bed early because I thought that I would have chemo on Monday. When I turned out the light and was ready to sleep I realized that something was wrong. The Nurse Practitioner with whom I had an appointment with does not work on Mondays....... Do I really have chemo tomorrow? A quick check...damn no, I had mixed up the dates. Not so nice, I had a companion who would pick me up at  730, I had written it on my blog .... Chemo destroys more than it should ..... my brain capacity is deteriorating very quickly. I need to do something about this.

I was sad yesterday in anticipation of the test of this morning but felt nevertheless pretty good. Oene and Eline were already awake at 6 am this morning, me to, it was a treat to have them in bed with me for almost an hour. Life can be great!

Stay strong

I will beat the statistics

Berend

Even van me af schrijven - Releasing some steam by writing

Eindelijk iemand die iets positiefs zag in mijn casus. Mijn trouwste belangenbehartiger had nog 2 keer gevraagd of ze alle informatie hadden. Ja, zeiden. Ik had het ook nog gevraagd. Ik moest me geen zorgen maken; mijn casus was bekend. Ze hadden alle info die ze nodig hadden. Ze waren routinees in het weghalen van slokdarmen. 40 keer per jaar deden ze het. Ja, je kon prima zonder leven. Je moest enkel je eet patroon aanpassen. Je maag zou de functie van slokdarm overnemen. Een buis ipv een zak. Kleine hoeveelheden eten. Sporten zou geen probleem zijn. De operatie werd typisch met een robot uitgevoerd. Het zou over 7 weken kunnen, dat was genoeg tijd na de laatste chemo. Nee, ze hadden nog geen patiënten met zo erge uitzaaiing geopereerd; maar dat maakte niet uit. De norm was verschoven. Ja, ze hadden alle info, er moest enkel nog een PET CT scan gemaakt worden. Deze moest niet slechter zijn dan die van Juni dan zou opereren kunnen. Of ik zo snel mogelijk langs wilde komen om de arts te spreken. PET CT scan en uitslag kon nog voor mijn skivakantie geregeld worden. Tuurlijk ik kan morgen. Ik ben bij jullie om half vier.  Dit was dinsdagmiddag 5 uur. Het gesprek duurde bijna een half uur. Suus ziek...wie moet er mee. Mijn ouders zouden alle kleinkinderen meenemen naar Ernst, Bobby en de rest, dus zij niet.  Mijn trouwste belangenbehartiger kon tijd vrij maken. Mijn schoonzus kon me brengen.....alles was geregeld. Ik sliep goed maar kort dinsdagnacht. De dag vloog voorbij. Mijn schoonzus haalde me op. We waren ruim op tijd. Meer dan een een uur lieten ze ons wachten. Het gesprek ging goed. Alle vragen werden beantwoord. Die leek echt goed te gaan. Ja, andere ziekenhuizen hadden nee gezegd. Dat kon. Zij zagen het anders....zij waren de voorlopers. Mijn reactie op de chemo was uniek. Ja, het enige was dat ze toch nog niet de eerste PET CT scan uit juni hadden bekeken. Was nog niet gelukt. Of ik anders de foto's kon mailen daarvan. Tot waar de uitzaaiingen waren? Ja ergens laag in mijn darmen. Tot ongeveer mijn navel. Geen probleem zolang het niet lager was. Ik zou vandaag (donderdag nog gebeld worden). Er was geen enkele aanwijzing dat ik slecht nieuws zou kunnen krijgen. Om 13.10 belde de arts mij op. Ehh, hij had zich niet gerealiseerd dat mijn uitzaaiingen niet alleen rondom mijn slokdarm en darmen was. Mijn uitzaaiigen rondom de aorta, het hart, mijn alvleesklier etc ja dat was toch andere koek. Spijtig. Operatie is geen optie. Goverdomme........klootzakken. Ik ben geen speelbal. Jullie hadden toch alle info. Mijn trouwste belangenbehartiger en ik hebben verdomme een eigen protocol afgesproken om dit soort misstappen te voorkomen. Dat hadden we geleerd van de verschillende second opinions in December. Die hadden zo veel kracht gekost. Pas als de artsen confirmeren dat ze alle info hebben, dan pas kom ik in beeld. Daarvoor gaat al het contact via mijn trouwste belangenbehartiger. Hem is niets te verwijten. 2 keer is hem geconfirmeerd dat ze alles hadden (gezien). Gelukkig heb ik maar krap 48 uur met het idee rond gelopen dat we de oplossing hadden. Suus is nog steeds ziek, dus de kinderen en het runnen van de huishouding zijn een goeie afleiding. Maandag aan de slag. Ik ben nog meer gedreven dan voor dit euvel. Bring it on. De beuk erin.

Stay strong.

I will beat the statistics.

Berend


Finally someone who saw something positive in my case. My most loyal advocate had asked twice if they had all information necessary. Yes, they said. I also asked. I should not worry, they knew my case. They had all the information they needed. They were specialists in removing the oesophageal. They did it 40 times a year. Yes, you could well live without one. You just had to adjust your eating pattern. Your stomach would take over the function of esophagus. A tube instead of a bag. Small amounts of food. Sports would not be a problem. The operation was typically carried out with a robot. It would be done maybe already in seven weeks, that would be enough time after the last chemo. No, they had not operated on patients with similar severe metastasis, but that did not matter. The standard had shifted. Yes, they had all the info, it would only be necessary to do a PET CT scan. If this was no worse than that of June if would be a go ahead. If i could drop by as soon as possible to speak to the doctor. The PET and CT scan and results session could still be arranged before my skiing holiday. Sure I could drop by tomorrow. I'll be there at half past four. This was Tuesday 5 o'clock. The conversation lasted nearly half an hour. Suus was still sick ... who would accompany me? My parents would take all the grandchildren to a Dutch children show, so they could not do it. My most loyal advocate could make time. My sister in law could bring me ..... everything was arranged. I slept well but briefly Tuesday night. The day flew by. My sister in law picked me up. We had plenty of time. They let us wait for more than an hour. The interview went well. All questions were answered. It was to good to be true. Yes, other hospitals had said no. It happened. They saw it differently .... they were the forerunners. My reaction to the chemo was unique. Yes, the only thing was that still missing was the first PET CT scan in June had viewed. Or else I could mail them the pictures. To what level was the metastases? Eh....somewhere in my intestines up to the level of my navel. No problem as long as it was not lower. I would be called today (Thursday). There was no indication that I might get bad news. At 13.10 the doctor phoned me. Ehh, he had not realized that my metastases was not only around my esophagus and my intestines. My metastases are also around the aorta, my heart, my pancreas etc yes that was still different. They were sorry. Surgery is not an option. Goddamn ........ bastards. I'm not a plaything. You said you had viewed all the info. Worst of all my most loyal advocate and I devised our own protocol to prevent these kind of mistakes from happening. We had learned it the hard way in December with all the second opinions. They cost a lot of energy. Only when the doctors confirm that they have all the info, then I come into the picture. Beforehand all contact go through my most loyal advocate. He is not to blame. They confirmed to him twice that they had viewed everything. Luckily I only walked around for 48 hours with the idea that we had the solution. Suus is still sick, so the kids and running the household are a good distraction. Monday my next chemo. I'm even more motivated than before Tuesday. Bring it on. I am ready.

Stay strong.

I will beat the statistics.

Berend

The other side of the coin

No idea why, but this time I feel more like starting in English. It is a more subtle language than Dutch, which I am forgetting quite rapidly with all the Dutch around me and the chemo eating up my brain.

Rome was great. Suzanne suggested we rent a scooter, which we did. No need for any drivers licence in Italy up to 125 cc. We drove more than 85 kilometres within Rome in 3 days. We saw everything and enjoyed the Roman way of life to the max and the heavy traffic in Rome. At the end of the 3 day trip I drove more Roman than Roman do. I totally ignored my dietary requirements and enjoyed the Italian food in all aspects... anti-pasta, pasta, pizza, primi, secundi, fish, saltimbocca, truffle, ice cream (the best in the world - chocolate meringue!) and desserts. I even drank two small glasses of wine - Barolo off course! I brought back with us a big shopping bag full of Italian specialties, including some tomatoes, red pepper and truffle.

We returned Sunday afternoon and had the result appointment on Monday morning. I slept fine, still in my Roman blues. I was quite relax while awaiting the results. Within a minute while telling the doctor how many kilometres I had biked, skated and skied, she gave us the good news that all was stable. Normally she is very conservative and careful with her remarks, but this time she showed for the first time that she also is starting to believe in a miracle. She briefly mentioned that maybe in a few month time they could consider other avenues......is this light at the end of the tunnel? For the time being she was very clear not to change the winning strategy; i.e. we are proceeding as planned.

It is interesting to experience that although Suzanne and I were very relax beforehand, still in the Roman blues probably, underneath there was a lot of anxiety and stress. It all erupted afterwards.....suddenly we were in a stupid fight and before I knew it I was in the train heading home while Suzanne was in the car. Not something to be proud off. But the fact of life is that this disease causes a lot of stress in a relationship. We both experience it differently and more importantly, our feelings and anxiety will be different at any given point in time. Our feeling will not often be in sync. I can be in low while Suzanne is more stable or vice versa. The thing is that you will be protecting yourself and will be ensuring that you do not slip into the low together. We were there during the first few days and I can tell you it is devastating; as such you go in survival mode and do not want to go down at the same time. It is of course also very different for the patient and the care taker. In any event it is very strenuous on a relationship. Thank god (if there is one) that despite our ups and downs (which are clearly more caused by my volatile personality) we are also able to find time and space to level and share our feelings; to be positively in sync. This ensures that we are still able to enjoy life. It is easy to drift apart as a result of cancer. Unfortunately, it often happens that people split up after having recovered from it. I do not expect this to happen to us, but there is no free lunch in life, we will need to work on our relationship to ensure that it won't happen.

It might sound strange but I am sometimes getting very tired of my way of life. I am constantly trying to convince myself that I will not die. 62 rounds on the skating ring, 8000 metres of altitude difference on the ski slope, 32 km on natural ice and most recently 37 km on the mountain bike. Each time longer, harder and deeper. Not to convince you, but to convince myself; I will not die. I will win this fight. If I am at the top of world while riding my bike, skiing down the slope or skating on ice, I will not die. Even more, nobody around me will ever be able to grasp that I am doing this while having cancer. They don't know it and considering that I am overtaking them on my bike or on ice, or skiing smoother and quicker down the hill they will never expect it. If I sport alone I typically am shouting and screaming at the cancer while doing my thing. Most people that come across me will think "that guy is crazy". Although all the activity gives me a boost in endorphines, it is tiresome to always have to perform. I do not need to win from the people around me but I have to out beat myself. I have to win. My drive to live is fueled by my anxiety to die.

I am greatly jealous of you out there that are living my live that I always wanted to live. That's why I might not always sound that interested in your stories. I live in my own world. A very different one than yours. One full of drive, joy, stress, anxiety and cancer. That's my live. Your's feels like history for me for the time being.

This weekend it was my 39th birthday. Despite that Suzanne was sick (and is still in bed with flu) I enjoyed a great day with my family. We went to watch Ajax in the Amsterdam Arena with almost my entire family. They did not win but it was a great experience. I was a bit anxious to take my entire family to a place full of hooligans, but luckily we were sitting opposite the hard core fans instead of in their middle.

You can hear Oene cheering for the biggest Dutch soccer club!

Tomorrow a last minute second opinion. A Dutch specialist of oesophagus resection who sounded positive. Let's keep our fingers crossed. This might be it. This might be the break I have been waiting for......if not, Monday yet again a blood test and Bevacizumab, the start of my 11's chemo session. Bring it on. I am ready. The week thereafter 10 days of skiing with the family. Than a few days at home and again a short ski trip withmy sister and a few friends. Hard core skiing (just so they know). I might have cancer, but at least I ski 4 weeks this year.

Stay strong.

I will beat the statistics.

Berend

Geen nieuws is goed nieuws - No news is good news

De uitslag was goed. Rome was heerlijk. Volgende week een nieuwe blog.
The CT result was positive. Rome was great. Next week I'll write a longer blog.