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.
What’s new today? The HR manager of my employer came over to our house. We have never met her before. Armed to the teeth of course, Eric Jan Krupe (my adviser and representing me) was also available. After some chitchat the HR manager came to the point: this visit was supposed to be friendly she said. And friendly it was (from the beginning till the end).
Unfortunately I was struck by a sudden headache so I had to lie down on my bed while in the comforting knowledge that my destiny was in the hands of a more than capable Eric-Jan and Monling. About one hour later she left again. Now we know that we are in the capable hands of a friendly HR Manager supported by people that know what to do. That in itself is quite a relief.
Exactly four months later than my first surgery I’m back at “Cranius”. I’ve missed you all and from the many cards and other signs of attention I’m getting the impression that you missed me too! Please forgive me from not writing earlier: my condition didn’t (doesn’t) allow for it.
I’m currently at home and go to the RCA on most weekdays. My right foot and leg are almost back to normal whereas my arm is still painfull (“Frozen Shoulder”). The radiotherapy has been completed but as a result the skin of my skull has been infected. My energy is slowly returning (for example: to come to this point in this text I required a total time of 72 minutes – yes, your eyes do not betray you). I’m walking ok, writing (by hand) is limited still to copying parts of letters (in the way that you would learn this in the elementary school), speaking is going fairly well (limited ”only” by an “uhhhh”-sound in case I can’t find a word which results in a problem in 50% of the time). The problems double vision and double hearing are no longer there but the problem of changed taste is still there.
I’m stuggling with regaining my energy, especially after I was struck by another seizure recently. This also limits the length of my posts. I have the intention write a post every week (yes I know that this will be a serious dent in my service level :0). So be it.
Long night, little rest. Monling wakes up all the from my trips to the toilet and has decided to take a sleeping pill. I wake up at 06:30am and can’t sleep anymore but still decide to stay in bed. Headache. The sun is shining, the cat settles on the pillow and my iPod Touch is helping me to relax. Nice and warm. I get up at 9:00am, feed the cats, prepare my medication and have breakfast with a nice large cappuccino (Illy 100% Arabica). Good for the headache. Aspirine as well.
We’ve started thinking about a new place to live last week although our house is actually ideal in many ways: conveniently located near shops (15 minutes on foot), highway (5 minutes by car), the centre of Amsterdam (20 minutes by bike) and public transport (5 minutes on foot). Living left and right from us do we have very kind, understanding and helpful neighbours, they are about our age. We live along a rather busy street (Dutch standards) but opposite from a park with a great lake. And last but not least there are a massive sports centre and a swimming pool on the other side of the lake (15 minutes by bike) to burn those calories.
Our house is also what we’ve always wanted to have. It is spacious, it is bright, has good environmental parameters, it is low maintenance, has modern architecture and we turned a respectable part of it into a great functional office (almost large enough to put a full size pool table). We’re very pleased with our house.
“So why consider moving?” I can hear you think. Good question! There are a few reasons, some more important and relevant than the others. Very important is that we would like to live in an apartment rather than a house to avoid having to walk stairs (I assume that my right leg will at least not become better than it is now). Also important is that we have the impression that this neighbourhood is perhaps not developing itself in our best interests. Then there is our (my?) dream to still live a few years in Asia (Taiwan, Japan) or at least in the centre of a city like Amsterdam and with my life expectancy we better do something soon or forget all about it.
So this morning I queried the Internet for construction projects for new apartments in the area of Amsterdam, preferably the “Nieuwmarktbuurt” (centre and the place of China Town). I was not very successful so I extended the search area to Haarlem (a very nice “town” with an old centre with lots of restaurants). My first conclusion is that either nothing is (becomes) available or the prices are 4x of what we have now. I’ll keep you posted.
This afternoon we went cycling for the first time in weeks. With my new basketball shoes, my new sweater and my new cap. The shoes give me a lot of support and I was able to do about 75% of the lake before I got tired and my foot started flopping around. We didn’t stop though, we went for the full lake. Putting on these basketball shoes is a pain in the neck. I have to undo some of the shoelaces and then still I can barely manage to put them on. For sure I need a shoehorn. It was a great trip though and a big confidence builder!
The attached foto was made today in the “office”. I look fat because I have become very fat. I’m not proud of it. The Dexamethasone is making my face swell like a football and the eating frenzy it gives me is not helping very much. No matter how often I go to the toilet: this is the sad result. Bear with me.
My friend Marcus invited me a few weeks ago to join him, his wife and some other friends to see the new show of a Dutch theatre group called Carver. I have been invited several times before and it is always great fun. The title of this show was “Gods waiting room”, it is about dementia and I was looking forward to it.
However, I had a bit of bad night last night with throbbing headaches (related to the edema I guess) and pain in my stomach (the Dexamethasone in combination with Keppra prove too much for the Pantozol). I woke up with a sock in my mouth. I didn’t feel like seeing the show. What a shame. Because as you can see on the You Tube video must it have been quite marvellous (sorry for the confusing music, you best put the Sonific player on mute for the duration of the You Tube video). I have decided to take a sleeping pill tonight. And later decided against it.
I commented on something Cybertcm wrote in his Blog. After a few days did I receive a lengthy explanation and set of instructions. I never asked for this. It is a nice example of the unexpected warm support I get from people I know but didn’t consider a friend and even people I didn’t know, like Cybetcm. Cybertcm must have studied my blog, collected my symptoms and complaints and has written the explanation and instructions. That must have taken time and energy that he was willing to spend on me. Someone he has never met.
How unbelievable kind is that? Since I was diagnosed with a brain tumor have several people reacted in a similar way. I received expensive and creative gifts, some friends travelled a long distance by plane to cheer me up, I was invited for a pop concerts, a good friend invited me for a fun weekend abroad, others volunteered drive me as I’m no longer allowed to drive a car.
Cybertcm suggests a treatment that aims to remove phlegm, improve blood circulation and to improve heart and body strength. I don’t want to include his advice in my blog as I consider that unfair (if you’re interested then please contact him directly through his blog) but his advice makes sense to me. Cybertcm. thanks so very much for your help!
Got up with a splitting headache this morning. Had to take two pain killers and went back to bed as the pain didn’t become less. Only several hours later it did drop to acceptable levels. I have to do something about this. It is hard to imagine that it related to the tumor, the headache sits right, the tumor should be located on the left. So I’m still convinced that is a nasty persistent sinusitis.
Despite the lingering headache still a productive day. Well, productive-ish that is. Worked a bit on “the memo” but inspiration didn’t kick in. My PC is getting slower and I’ve spend a lot of money on software utilities and programmes that, according to those that should know (PC-Active, PC-Magazine, CT, Chip), should clean the PC registry, de-clutter my memory and hard-disk and replace excessive memory using software. The result is zero (and I’m afraid it is even getting worse). Why do these wizards never give examples that make sense (in my situation)?
iPod Touch
Another example of IT trouble: a very close friend (Maurizio Calderone) gave me an iPod Touch. I’m a Microsoft user (not a Microsoft addict!) so it took me some time to get the hang of the typical Apple user interface but once I did could I juggle with iPod and iTunes like a professional. The iPod Touch is a wonderful gadget. Recently Apple started sending me e-mails about a software upgrade for the Touch. They released new applications for things like weather and stock.
I followed the instructions to the letter but the installation process could not be completed. I tried whatever I could but no reaction from the iPod. I browsed the Internet for information on the error code and found that I’m not the only one with the problem. After several days I read on Apple support website that I should try to recover the iPod from another PC. It seems to work now: iPod recovered but it only wants to connect to that PC. I just like things to work, especially when day after day your fuse is getting shorter.
This month my parents will celebrate their 50th wedding anniversary. My ‘issue’ has caused some problems because nobody knew if I would be fit and available. As it seems that this will be the case did my sister and I together with our partners decide to have our picture taken by a professional photographer and present our parents with the result.
We all live in the area of Amsterdam but we had selected a photographer in Zutphen. A very pleasant man full of energy and ideas so that we’re looking forward to the result. I was a wonderful experience, very emotional at times, and the photos to look great. By the time we were back at home though did I have a horrible headache so that after shopping for dinner and dinner itself I went to bed early with a pain killer.
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). 
This afternoon we went cycling for the first time in weeks. With my new basketball shoes, my new sweater and my new cap. The shoes give me a lot of support and I was able to do about 75% of the lake before I got tired and my foot started flopping around. We didn’t stop though, we went for the full lake. Putting on these basketball shoes is a pain in the neck. I have to undo some of the shoelaces and then still I can barely manage to put them on. For sure I need a shoehorn. It was a great trip though and a big confidence builder!
