Tomorrow

Tomorrow will I hear the outcome of all the tests I hated so much: MRI, fMRI, MEG and Neuro-Psychological Tests. Peanuts in retrospect. Peanuts compared to tomorrow because tomorrow I will hear the outcome. I would like to think that it is the beginning of a new life rather the end of the old. I’m not superstitious but now I am. I don’t know what to expect. What will I write tomorrow around this time? I dare not think about the many possibilities.

Life around me continues at the same speed, it is me that has slowed down. Will I get the opportunity to merge with my old life again? Should I want that to happen or does it not matter what I want anymore? I dare not make promises to myself. I feel that I have almost come to a complete stop. Some friends are planning their holiday, others are fighting for their job. It is so unimportant what we do, we make so little difference. How can I mobilize the energy in myself, the energy that I need to move on. Should I want to do so.

Tomorrow will I hear the result. I hope to hear that surgery, the awake craniotomy, is still a valid possibility. That the tumor has not grown. That the prognosis is still good. I’ll keep you informed.

MEG: The real thing

Today I was scheduled for the “real MEG”. The check comprised a functional MEG followed by an MRI scan to enhance the MEG result by superimposing the images of the MEG and MRI. As the MEG and MRI are performed by different departments was it necessary to attach 3D reference points to my head.

For that purpose the operator attached three coils to my face (above nose and ears)  to allow the MEG equipment to locate the position of my head in the helmet. After completion of the MEG these coils were replaced by three black dots made with a black marker. Just before the MRI took place the MEG operator stuck little capsules with fish oil (!) on each of the black dots. These were to be picked up by the MRI. The hospital in which I get my treatment is the only hospital in the Netherlands where patients are being checked with this type of MEG procedure.

If you happen to suffer from claustrophobia then you know that afriendly and professional MEG or MRI operator can make just the difference your need to get through a MEG or MRI. My experience during the trial MEG was not very positive (Meg Trial Registration) and I was therefore concerned about my ability to control myself during the real MEG today.

In the last session with the psychologist did we take the action to restore the level of confidence and trust in that operator as much as we could. That was not necessary though as the MEG was performed by a different operator from last time: this one was friendly and professional! The “real” MEG of this morning went very well just because of that. Of course, a MEG check will never be something I do for fun. I only time I got really scared was when I was asked to place my head into the MEG helmet. The operator gave me all the time I needed to get used to the idea and within a couple of minutes, while thinking of Systematic Desensitization, was I ready for the MEG process.

The tasks to be performed were not complex: about 15 minutes of relaxation with eyes closed, 10 minutes/hand of hand movement and 10 minutes/foot of foot movement. Finally some muscles in my hands and feet were stimulated with small electric little shocks (about 5 minutes per hand and foot). The entire check lasted just under 2.5 hours. Quite some time if you have a cold and need to pee.

With three fish oil capsules stuck to my face I went to the MRI department in another building. I was positively surprised again, the latest model MRI from Siemens was waiting for me (the Siemens Avanto). Much shorter and much faster than the Siemens Sonata, which is used for the fMRI in this hospital and again much shorter and faster than the older types of MRI. Great!

The fish oil capsules prevented the usage of a headphone so some foam was placed inside the “helmet”. When I complained about it being too tight to avoid full blown panic the friendly operator (a different one) replaced them with less thick pads. I kept my eyes closed while being moved into the machine and 10 minutes later was moved out again. Amazing. Cheers to all the friendly operators of the MEG and MRI today!

Warm rain

It has been raining most of the week and today I didn’t leave the house. Tomorrow I have the MEG and MRI and they occupy my thoughts. I keep telling myself that it will be fine, I know I will be fine, but still .. I got up late this morning, stiff from the rheumatism in my legs, back and hands and muscles in my back sore from the flu. I feel like an old man but because of my age do I not qualify yet. Breakfast (toast with apricot jam and a cappuccino) helped me to get back on track and I worked the remainder of the morning and most of the afternoon.

Today’s task was to create up-to-date organisation charts with all staff and management of my region in them. It is the same old story, managers don’t talk with each other and provide me (eventually) with crap data. Why don’t they check their output and why don’t they check with eachother on standardization issues. I’ve been working on this task for days now and the result is poor. I’m disappointing my manager and that feels bad. I have given one manager an ultimatum, sort your stuff buddy or else ..

My wife is not feeling well. She had some pork a friend in Taiwan made for her and she probably ate too much of it. It made me realize how fragile we are. We depend on each other completely. I’ve stopped making sense I think? I got an e-mail from a good friend yesterday and I decided to send an answer today. She is one of the few people asking how Monling is doing. I find that very considerate. I believe I said it before, I think that Monling has a even tougher time than me.

It has been raining most of today. It is winter out here and it should be freezing cold but it is not. Monling said that this weather is almost like winter in Taiwan. The only difference is that we have a heating, on Taiwan they normally don’t. Must be cold out there now. In Taipei there is a hotel with a beautiful spring bath (onsen) and in this bath they have a “tropical rain forest”: a very large shower (1m x 2m) with a perforated ceiling from which hot water is pouring down like warm rain. It is a wonderful experience .. there is so much water coming down that it is difficult to breath!

Yesterdays session with the psychologist resulted in a few actions on me: talk to the MEG operator, ask for more information on the MEG procedure, try to have the MRI in Sonata (short MRI) and talk with Monling to agree on signals for communication. I didn’t do any of them. Was I too lazy or too busy? No, I don’t think so. Am I pushing the limits of my fear for being buried alive? Yes, perhaps. Well, we’ll see how the MEG and MRI will go tomorrow. I’ll keep you posted.

The flu worsens

The flu has become a lot worse last night and I haven’t slept a lot due to severe headaches.  Every time I blow my nose my frontal sinuses get pressurized but as my ostia seem to be blocked is that pressure not (immediately) released. Such pain and nothing you can do about it. When landing in Rome during my recent trip to Italy I had the same problem. When lying  in bed on my back snot (nasal mucus) is slowly dripping in my throat. I hope this doesn’t happen while in the MEG and/or fMRI.

That the flu doesn’t get better probably means that I will not be going to Spain at the end of next next week with my good friend. So no golf, great food and relaxation. I write this while the rain is beating against the windows and while knowing that in Spain it will be dry and relatively warm. Who said that life is fair :-)?

MEG Trial Registration

During our second visit to the Neuro-Surgeon did he tell us that a number of checks are required to build a 3D model of my head with the precise location of not only the tumor, but also of the functional areas that are/may be affected by the tumor. The most important checks are the fMRI and the MEG. We were told that the MEG has to take place before the fMRI but not the reason. Now we know.

During the fMRI a strong magnetic field a powerful magnetic field is created which aligns the magnetization of the hydrogen atoms in the body. Radio waves are then use to alter the alignment of this magnetization which cause the hydrogen atoms to emit a radio signal.  MEG is an imaging technique used to measure the magnetic fields produced by electrical activity in the brain via extreme sensitive devices. The powerful magnetic field of the (f)MRI may leave traces of magnetism behind that disturb these sensitive devices.

We were informed by the hospital that the trial fMRI, performed with only good intentions to help me deal with the claustrophobia, may have become a reason for a delay in the execution of the MEG. We were asked to come to the hospital for a trial session with the MEG. The Neuro-Surgeon had already told me that the MEG is not on the wish list of people with claustrophobia. I therefore prepared myself by looking for images of a MEG device on Internet. All pictures I could find show a large chair in which you sit and where you have a rather large contraption (a kind of ‘helmet’) on your head. As it was easy to see that ones eyes are not covered did I not worry too much.

However, the reality was different. I had to lie down in a big machine that almost completely covered my eyes, in a room with a very low ceiling and sealed by a door of about 75cm thick. I immediately freaked out. When I wanted to remove my head from the machine I was initially not allowed. “No!” the nurse said.  which is not the kind of reassuring response one expects in such situation. After some time was I able to condition myself and did I get somewhat used to the MEG. I stayed about 15 minutes inside and then the nurse told us that the trial fMRI had not magnetized my head. She came back into the MEG chamber but she didn’t allow me to leave immediately, I was forced to lie down inside the machine for another 5 minutes. This definitely did not help.

She told me later that the real MEG will take place on the 23rd of January, that it will take 2 hours (!) and that it will followed by a “normal” MRI.  Fortunately I can keep my eyes closed during this “normal” MRI.