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.

fMRI: The real thing

D-day: today the test I feared most was performed: the fMRI. The same no-nonsense nurse/operator who performed the trial fMRI a few weeks ago did, as he had promised, also perform this real fMRI scan. A wonderful trustworthy guy. I had asked him to give me some time prior to the scan to discuss my ‘fear factors’. He listened very carefully and told me not to worry (he was also informed by the psychologist).

He was willing to reduce the amount of foam that was to lock my head in the MRI ‘helmet’ but made me promise that I would not move my head. He told me that it was possible to break the scan into segments (I asked for that) but advised against it. It would increase the length of the total procedure as some recordings would have to be performed again. Just the fact that I could was enough for me. He also promised to keep me informed about progress of the series of recordings which he did.

To control my claustrophobia it was important for me to be able communicate with the operator. That is very difficult as the operator is in another room, separated by a thick door, and as the communication between operator and patient is only one-way (the patient can hear operator instructions, but not the other way around). My wife was therefore allowed to hold my feet and she could relay my ‘answers’ with gestures to the operator through a window in the room. It means a lot to have someone with you that you can trust. We agreed signals for ‘no’ and ‘yes’. Last but not least I was given a small balloon to request an immediate stop of the test.

It was just as Andrea wrote in her blog (Newly Diagnosed MS) with the big difference of course that I was told to keep my eyes open to be able to read the instructions on a projection screen placed at the end of the MRI tunnel. The moment the helmet closed over my head (a helmet with small holes for your eyes to see through into a mirror under an angle of 45 degrees) claustrophobia immediately kicked in. I asked for the helmet to be removed for a minuted and conditioned myself using the Systematic Desensitization. That went rather well, perhaps also as my Reiki coach sent me a truck load of confidence and courage while I was on my way to the hospital.

I had to perform three tests. Test #1 was to ‘think’ words starting with the letter projected on a screen outside the MRI tunnel. After a few letters (4-5) a little star appeared, the sign that I was not allowed to think about words but instead of a walk on the beach. Then a similar sequence started and this was repeated for about 10-15 minutes. Test #2 was to repeatedly bend and straighten the fingers of my right hand while I was seeing the word ‘Action’ projected on the screen and to stop doing so when the word ‘Rest’ appeared. This sequence was to be performed for about 6 minutes for each hand. Test #3 was similar to test #2 but now for both feet (bending and stretching my toes).

The entire fMRI check took just less than an hour and was made possible by a very understanding operator, my loving wife, the support of my Reiki coach and a lot of confident friends. It helps a lot though to understand the processes in your head and to understand that you’re (or can be) in control. This at least worked in my case. Thanks everybody so much to help me get through (literally!).

Rotterdam Film Festival

My wife took me to the Rotterdam Film Festival yesterday. She had booked a room in the Hilton, arranged high tea and reserved tickets for a Chinese movie. We saw the movie “Lust, Caution” by Ang Lee and it was beautiful, even stunning at times. So much detail and very good acting of the main actors. We had dinner in restaurant Tai-Wu in Rotterdam. It’s always packed but especially so during the Rotterdam Film Festival. Tai-Wu is renowned for its DimSum but not so much for dinner. The Asian eggplant with shitake was however fantastic. After dinner we saw another movie not worth mentioning here.

Today I had to go to the psychologist again. Our third visit. After the successful treatment of last time (prior to the MEG and MRI) was the objective this time to prepare me for the fMRI that will take place on the 1st of February. The meeting was kind of a failure. I had prepared myself by making a list that frighten me and I had already prioritized them. I had also thought of measures to be taken to reduce the scare factor and we discussed these. All in line with the process of Systematic Desensitization.

At some point the psychologist insisted that should realize that I can get out of the fMRI tunnel any time I like. As I know that this will render the check useless do I not consider that an option. I have to go through fMRI if I want to live longer and therefore consider a “premature ejaculation” from the fMRI a failure and not an option. According to my wife do I have a strict black-white approach to life and she believes that I should apply more grey.

The psychologist agreed to that and believes I’m too tough and inflexible on myself. Perhaps I am. The fact remains that I’m absolutely not confident about going through the fMRI on Friday. While thinking about the fMRI do I become very angry, more angry than afraid. I can’t stand it that time and time again I (have to) engage in a fight with myself where that fight is actually very in-productive. I realize now that I’m both mentally and physically struggling and now that I’m in this state, with a brain tumor, everything comes together. Where is this going?

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!

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.