During the 5th evaluation (Evaluation of my 5th chemo) we received some very confusing news. Today we heard why there was so much confusion between all parties: the International Standard for grading tumors has changed. The spectrum of grading tumors has shifted towards lower grade tumors: what used to be called a grade three tumor may now be called a grade four tumor (if it is a ‘bad’ grade three). If you’re confused I have probably explained it the wrong way. Just let me know (send an e-mail to Cranius).
Dr. Büter (Neuro-Oncologist)
In fact the neuro-oncologist explained that it also depends on where you perform the biopsies. If you perform a biopsy in one part of the tumor you may see a very different grade tumor than if you perform the same biopsy in the same tumor but only a few millimetres away. Very reassuring of course. Not!
They asked how I was doing and I told them that the headaches (in the left side of my brain) are regularly quite severe and that the skin covering the hole where the boneflap used to be formed a bubble (instead of the normal slight hollow formed by a much softer skin).
I had a (minor) seizure on the 24th of June. Then I felt the seizure start at my right hand to slowly ‘invade’ my right arm, my right leg and the right side of my face (subsequently) until my right side was completely paralized. I even couldn’t speak. The previous time I had a (minor) seizure was on the 27th of February (2009). That (low) frequency they thought was good news.
We are left with many questions, mainly because of the discrepancy between various bits of information: they just don’t match. We can’t believe that they are telling us porkies so that our only conclusion can be that they don’t know. We can only rely on ourselves and on filtered medical information (by the medical staff or ourselves). Such as the results of my MRI scans. Now that sad conclusion brings us onto a happy topic.
My blood values (bone marrow: good, kidneys: good and my liver: good), no fever, insignificant high blood pressure (max 150/99) together with my good condition (I still visit the RCA twice per week) guarantee optimal conditions for a longer life. The neuro-oncologist and neurologist compared three MRI scan results for us:
just before the first chemo (MRI 09JAN2009, evaluation 14JAN2009)
after the third month (MRI 27MAR2009, evaluation 08APR2009)
after the sixth month (MRI 28JUN2009, evaluation 01JUL2009)
The bright white tumor tissue on the MRI scan has not only not grown but has also slightly reduced in size!! So we can’t predict how much longer I will live but for sure it’s longer than what we thought before.
During the entire month of June I ran a poll asking you whether I should continue with my blog or not. I got 85 responses in total of which 1% (1) “Didn’t care” and the remaining 99% [84] answered “Yes, absolutely”. Thats not bad at all for a private blog with an average of 2217 blog views/month. My conclusion is therefore that I will continue as long as I can.
Left2Right: Gilbert, Marjolijn, me, my father and my mother
My mothers birthday is actually on the 1st of July but because my sister and brother-in-law are on holdiday to the South of France that day they (my sister and brother-in-law) invited us for lunch two weeks earlier. Only I went (to give my wife Monling some off-duty time). We enjoyed a lovely lunch in Breukelen.
My mother and father at Restaurant Robert
Ten days later she (my mother) invited us at restaurant Robert in Hilversum. Monling didn’t know the restaurant and thought that they served some great food. I especially had some great vegetarian dishes.
Left2Right: My father and I
A few few weeks earlier (5th of June) I asked my parents to accompany me on a walk through the Vondelpark. I was pushing my wheelchair just in case I felt tired. We had tea in the “Blauwe Theehuis” and there I found a board you can see at fancy fairs (the kind with oval holes for heads). I invited my father to join me and asked my mother to take a picture. Hillareous!
Later I didn’t see the huge pile of dog shit (must have been produced by a St. Bernard) and instead walked with my new Italian shoes straight through that pile of shit! Not so hillareous! I had to ask my father to clean my shoes (a long time ago he would use his pocket knife for this dirty job, now he used a small stick). I must admit that we can’t do without our parents.
Bas came today from Italia with so much cheese (multiple kg’s). He brought at least a kilo of fresh Mozzarella di Bufala (delicious), at least a kilo of Parmigiano Reggiano (the real parmigiano!) and the truffle cheese I ordered (cheese with black truffle by Beppino Occelli). Monling made each of us a plate with about 300gr fresh mozzarella di buffala with tomatoes and lots of basil and some artisan olive oil (my neighbor has a brother who has a shop specialized in olive oil).
After that we went for the beach to roast (as Monling calls it) our bodies. It was despite the very nice weather (with temperatures of 30 degrees centigrade and a comfortable wind) very quiet on the beach (Bloemendael). After the sunbathing we went to restaurant Mezzo in Haarlem and had a great dinner. Bas thanks very much for the cheese and the great day!
On Saturday evening three Czech ex-collegues and colleague (now all frieds) came all the way from the Czech Republic (one way is equal to 9 hours!) to see us. They were exactly on time thanks to the navigators (Lenka and an electronic GPS based). They brought us so many gifts: a wonderful album with printed pictures (which I started browsing through immediately), some batiked scarfs and a lovely tie, two bottles of Fernet (one of them filled with transparent liquid called “8000″), a bottle of Becherovka and a bunch of flowers. Unfortunately I forgot to tell them that I can’t drink any alcohol in combination with the anti-epileptics (that I must take for the rest of life) so I’m afraid that I will have to give Mirek’s gifts away to other friends.
Why I was working in the Czech Republic in the first place you may wonder? I was ordered by my Dutch boss to setup a branch office in the Czech Republic (2001). I was appointed Director of this Czech branch office and was responsible for e.g. recruitment and finance. I numbered all my employees. I was number one and I recruited number two (Hana Jakobova, the Company Secretary). So also Robin and Lenka and Mirek. I guess they were respectively numbers 7, 15 and 5 and recruited by me. I remember clearly that we from time to time organized ‘fernet parties’ in the office where we used to mix coca-cola with fernet. I was often drunk these days :-).
Robin introduced me to moutain climbing. Although I was used to walking in the Swiss moutains with my parents (we visited Swiserland very often) to Robin that was kidsplay! We therefore first climbed to the summit of Mt. Snezka (real time webcamera’s can be seen here: http://kamery.humlnet.cz/en/videa/snezka/20090701 ), the highest ‘peak’ of the Czech Republic (1602 metres above sea level). Robin must have been impressed with my climbing so in September 2003 we went to the summit of highest mountain of the Slovak Republic: Mt. Gerlach of the High Tratras (2655 metres above sea level). You can find my Picasa (version 3) album here: Gerlachovsky stit
In the evening we went to restaurant Pieck in Haarlem. This used to be our favorite restaurant years ago because of the speed at which they serve you, the friendly ambiance and the quality food. Both ‘Pieck’ brothers are still running the show but don’t have their act together anymore. Pity. I wish we had dinner in the opposite restaurant Metzo instead. Dear friends, thanks for your visit!!
Yesterday Louis and his wife Sylvia came to see us. They brought us so many new toys for our cats (we share their love for cats). They bought us a canister with candy specific for cats, a long soft whip and three bumblebees (with this smell of catnip). We go way back, Louis and I, to the time we worked for Certec together. At that time we went many times to Belgium (Brussels) to work as programmers/testers for the Belgian branch of TEC (Certec is the Dutch branch office of TEC Belgium). The two of us worked there with “Guy” (?) under the supervision of Hendrik Devogelaere (Hendrik will visit us on the 20th of July). The four of us had a lot of fun back then. Louis and I shared so many good memories about that time yesterday, we had to laugh a lot.
When Louis left Certec to work for CMG (one of largest consultancy firms at that time) Louis asked me whether I would like to attend an “open house” or not. I appreciated that invitation assuming that there was plenty of opportunity to see employees actually performing their jobs, ask them questions and, most important, meet Louis. I was completely unaware of the revolutionary application process: only four interviews with a total duration of half a day, you had to stay all time in the same room and at the end you would leave CMG with a job offer (or not) accompanied by warning to respond within 10 days. There was no opportunity to meet Louis, no opportunity to ask nasty questions to various CMG staff and no opportunity to get a guided tour :-).
I took their offer to take a job as telecommunications consultant (Project Manager), working for operators like KPN and AT&T Unisource while Louis had become an architect on CMG’s SMSC (Short Message Service Center). I was hired thanks to the recommendation of Louis. Thanks for visiting us yesterday both of you!
Last night, while reading the June edition of the Dutch magazine of the organisation for Patients with Psoriasis, I found an advertisement asking for people with enough guts to be portrayed almost naked (men only in their briefs) showing their psoriasis. I guess they are especially looking for patients with the most severe types. They put an example in the magazine of a woman with clearly visible psoriasis. She, the model, looks glamorous despite her psoriasis!
So last night at 3am I looked up their website (I am what I am) and I liked what I saw. I decided to enroll for an audition. I got no reaction from the agency yet but I know that they received it. But now that presents me with a problem: if the agency decides to invite me for an audition then what underwear (briefs) to wear! What should you wear if you were me? Please specify brand, color and type (model)! I expect to hear anyway from you Oscar!
Marcus decided to drive me wherever I chose to go to my birthplace Naarden. Last time we (my mother, dad and I) visited Naarden also but not completely: we forgot to visit one house. ‘Our house’, the house where I was born and had grown up, was still there. Here Henkie Braam and I played with lego, here Wouter and I build our first cable car to the tree in the back of our garden and here I fell for the first time in love. All beautiful memories! Then we drove to the center to have lunch and had this picture taken by Myrna Goossens (who was also there to have lunch).
I don’t want to postpone writing the next post any longer. For your sake (I don’t want to have to filter information) and my sake (I want to write it down while I still can read my notes). So here it goes.
On the 3rd of June we had to be in the hospital again for a check (for the proceedings of this check I refer to my post “Evaluation of my 4th Chemo“, it’s always the same procedure). This time the Neuro-Oncologist was accompanied by an unknown (to us at least) Neurologist. She was very friendly though (Super Nurse was not there).
When asked I told him that I was doing well in general only I was from time to time suffering from headaches (severe flashes of pain) and nausea attacks (heaving, dry vomiting). He still decided to let me have the full 420mg Temodal and the other anti-nausea medication. We told them were pleased that it all went without the major side effects as we were told there would be. And also that we were happy that I had only one chemo left.
That caused some confusion on the other side of the table. Weren’t we informed that the second biopsy showed that I was was suffering from a 4th degree tumor? That came like a cold shower. When we asked Super Nurse (pls refer to my post ‘Super Nurse’of the 19th of May) for the DCvax treatment she answered clearly “no, you’ve a 3rd degree tumor and regulations require you must have a 4th grade tumor to apply for a DCvax Brain treatment”. Had we misunderstood Super Nurse or did we? They told us about the second bioptie and that must be some misunderstanding? Eventually we left his room, still shell shocked about what we just heard.
We decided to record the next session (this hospital is quite tolerant with allowing foto’s, documents and reports to be copied) which will take place early July. Keep your fingers crossed please all of you out there!
Dear readers, may I bother you with a serious question. I would like to know how many readers read my blog and whether you like it or not. That’s why I’ve setup this poll. Please pick the answer that is most near the truth, I will only take 10 seconds. I will gather your votes for the month of June. Please if possible use the comment/reply field to enter who you are and why you answered the answer that you did. Thanks very much for your cooperation.
This is a personal weblog. The opinions expressed here represent my own and not those of my employer. In addition, my thoughts and opinions change from time to time. I consider this a necessary consequence of having an open mind.
This weblog is intended to provide a semi-permanent point in time snapshot and manifestation of the various memes running around my brain, and as such any thoughts and opinions expressed within out-of-date posts may not the same, nor even similar, to those I may hold today.
All the characters, names and references to medical institutions and their medical experts and staff who treat or have treated me used in this blog are fictious. If some match those who are alive or dead, it is purely unintentional.
![healing[1]](http://cranius.files.wordpress.com/2009/07/healing1.jpg?w=150&h=112 "healing[1]")
During the 5th evaluation (Evaluation of my 5th chemo) we received some very confusing news. Today we heard why there was so much confusion between all parties: the International Standard for grading tumors has changed. The spectrum of grading tumors has shifted towards lower grade tumors: what used to be called a grade three tumor may now be called a grade four tumor (if it is a ‘bad’ grade three). If you’re confused I have probably explained it the wrong way. Just let me know (send an e-mail to Cranius). 
![healing[1]](http://cranius.files.wordpress.com/2009/06/healing1.jpg?w=150&h=112 "healing[1]")
I don’t want to postpone writing the next post any longer. For your sake (I don’t want to have to filter information) and my sake (I want to write it down while I still can read my notes). So here it goes.
