D-day Surgery: 24 April 2008

It is my father’s birthday today so when the hospital called with a date for my craniotomy I took that as a sign of good fortune. Surgery is planned for the 24th of April 2008! It is not really as fast as I had hoped for (I expected a date in the next two weeks) but this will have to do. There is no time for alternative plans anyway.

My wife watched an episode of a TV programme about brain surgery (recommended by the “Super Nurse”) and when my wife dared to watch it I did too. It was actually not as confronting as I thought and very informative. The case of the main character (a young woman) is so similar to mine. You can find it here, unfortunately it is completely in Dutch.

Bad news

The Neuro-Surgeon dealt us quite a bad blow today. Let’s start with the facts:

1. The tumor has become more obvious (demarcated) in the functional area for speech. This does not necessarily mean that the tumor has grown but at least it means that the Glioma has changed
2. The loss of right motor function has become more obvious. This is not necessarily due to the Glioma as rheumatism has kicked in again with full force since I had to stop with a drug called Eternacept (Enbrel)
3. The results of fMRI and MEG show that the Glioma is about 2 cm away from my speach area and has probably infiltrated the motor area

The first conclusion is that (Awake) Craniotomy in combination with Penfield brain mapping is no longer an option as it is considered too risky. The Neuro-Surgeon explained that he can’t remove a Glioma that has already infiltrated a function area. He does not consider the removal of the Glioma near the speech area and not near the motor area an option (near an option (a chain is as strong as the weakest link). Awake Craniotomy in combination with brain mapping was my best option as it combined a contolled risk with optimal tumor tissue removal.

The two remaining options are “Wait-and-See” (or any other fancy term) and a “Regular” Craniotomy. We had discarded the first option before and now that the Glioma seems to be growing is that still a good choice. The only option left is a Craniotomy and we were informed that although I will not be awake during surgery my motor function will be mapped without my cooperation.

The Neuro-Surgeon described a study that was performed among 200 patients with Glioma. These patients were divided in three groups: “Wait-and-See”, “Craniotomy” and “Awake Craniotomy”. The prognosis for the first group is poor, excellent for the third group and somewhere in the middle for the second group. I will try to obtain less vague information but I guess you get my point. My prognosis today is roughly 50% of last week. Surgery is planned for April-May.

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.