Surgery 06:46am

Yesterday at exactly 11am we were admitted to the Neurosurgry ward. We had to go throught the hassle with the “foodlists” (as a vegetarian you need different ones but they give you the opportunity to find that out yourself). Then a nurse and co-assistant came to see me, lots of questions there. The doctor of the ward passed by, all very friendly, and she performed a number a checks as well.

The highlight of the day was however the meeting with Dr. dWH and Dr. B. They took us to their library to show us the outcome of the 3D navigation model in my case. And it was impressive. First of all I recognized myself from the skull. I hadn’t expected that. More importantly of course were the size and location of the tumor. It sits like a mass of a little over 6cm x 4cm X 4cm in my head but has branches. There is a second tumor body, smaller in size but apparently more active, in the speech area. They are likely to be connected through the branches.

On the navigation screeens we could see which functional areas located where and how these have been invaded (or not) by the tumor. It is clear that a total resection is no longer a possibility. My Main Motor Area has been invaded and must be spared. The SMA can probably largely be taken away as this will be regenerated by either the right side or the remianing left side functions.

To my surprise we learned yesterday that the tumor had also invaded the right side of the brain. This is a process that has been going on since the beginning. They will remove this connection as good as they can.Then the speech area. Although my analyses was spot on (regarding Broca and Wernicke) did especially Dr. B discourage me to go for an alternative plan (I asked for a sacrifice of motor functions in favor of speech). Also then it became clear that there will be no major surgery planned in the speech area as the tumor is already too close to it. The Neurosurgeons will have to rely on their navigation system in combination with a visual check to see what they can and must do.

And that includes finding out the grade of the tumor. We have heard many ways of describing it by now: a 2, a “good” 2 and a “bad” 2, a 3 that behaves like a 2, definitely no 4. In the end I believe we will only know when the result of the biopsy is known.

Finally we answered questions from Dr. B and Dr. dWH about the exact nature of my problems. Dr. B suggested that the problems with my hand may very well be small seizures. They stayed behind to discuss my “Plan of Attack” a bit further. I believe that especially Dr. B asked for a different safety margin.

Marcus came to see me and told me about a lunch he arranged for his friends. I was surprised to hear that until he told me that it was his birthday. I’m soooo stupid. My wife tried to take my mind off things by taking me through the new mortgage of Ruud and the cost of the appartment.

Then my parents came to see me with a great sweatshirt. We talked and I explained the visit to the Neurosurgeons. I was alone for a few hours, quietly overthinking my sins ;-) until I realized that I had this opportunity: e-mail! So I read your wishes, wrote some answers and now this report. A friendly nurse washed me this morning, especially my hair and it is now 6:45am. They will come to prepare me for surgery soon.

Take care out there all of you and stay safe.

Not ready but still .. signing off!

There were still so many last minute things to do that it is again midnight on the day before surgery. I haven’t even been able to load all songs in my iPod or instructions for my wife about my complex filing system. Or time to look at the floorplans together and no time to study mortgage proposals. And no time to check whether the HD TV is functioning or not.

So I just want to make sure you haven’t missed my New Surgery Update page. Updates will be concise but I’m sure they will be meaningful. My sister will make sure of that. Hope to see you all in a while!

About to wind down ..

I really had a great night last night. I slept for hours, hardly woke up in between and got up at 8am. No appointments in the morning so plenty of time to work on my weblog. My weblog was suffering from a serious backlog and I heard from many people, either directly or indirectly, that they started to become concerned about what was going on.

And yes I can see where you coming from. No less than a week of time has expired between my post of the 11th of April and my post of the 15th (actually written several days later).  Not only the preparation for the meeting with the Neurosurgeon and handling his not very positive feedback (for the second time) were to blame for this. Several other “sub-projects” were about to land so I’ve been incredibly busy. I appreciate your concern, it is awkward but heartwarming that this blog actually works better than the way I intended it. On the 9th of April I reported more than 1000 unique hits, today (only 10 days later) that has increased to more than 1500 unique hits. It is absolutely irrelevant information but amazing nevertheless.   

Since yesterday is every day the “last” day before surgery. The last Friday, the last weekend, the last Monday and Tuesday and then we’re there. I’m not completely ready yet but then again I’m satisfied. I think that we’ve done a great job in preparing for all eventualities, often only possible with the help of many of our friends (see below).

Our finances have been properly arranged by Eric Jan, thanks to Marcus do we know how to deal with Home Care and the “Special handyman” and my family has helped out with fitting our bathroom for use by a lefty at mere expense of pizza’s. Hendrik and again Marcus helped me with the difficult choices related to the TV/Monitor and Bas and Fabio helped out with the Italian social system. Danielle and Frans sorted the same on the Dutch side. Martha and another dear friend have supported me all the way with Reiki (I use it quite successfully to relax) and friends from literally all over the world have send me their supporting messages.

Lenka and Robin, Sadakane San, my newly-found friend and source of ultimate wisdom Roads and Maarten (3x) thanks for your messages. Frits and Regine about to embark on a world trip are regular passers by and the good old Italian “Three Musketeers” keeping me informed of the right time. Maurizio and Katja came for the second time to the Netherlands to see me, Simon cheers me up sending crazy jokes by txt, Giuseppe keeps me up to date on the status of his tulips and Frits is going to push my wheelchair while I can’t talk yet. That will be interesting. Dick and Ellen it was so good to see you today and your gifts typical of who you are. I must have forgotten to mention a couple of people but I have to blame the tumor for that! Thanks to all of you!

I’m about to wind down, forget the weblog a bit. I will not be able to type and express myself properly anyway. More traditional ways of communication (telephone, e-mail, txt msgs) will take the place of my weblog as my wife and family and certain friends will try to make whatever they can of my motionless and speechless recovery period. Please bear with them.

Big yellow garbage truck!

This morning I got up at 6:30am, measured my weight (92.2kg) and fed the cats. I switched on the heating downstairs as well as my PC, prepared my pills for the Friday morning and had breakfast: two muesli rolls and a lot of pills. Time has started to run faster and faster and I’m frantically trying to keep up with it.

We expected a visit from our financial adviser with information on our mortgage in case we decide to swap house for apartment but he didn’t arrive. Monling appears to have a sixth sense for these situations and after ten minutes came to the conclusion that he had forgotten the appointment as he had not written the appointment down when he made it. She was right of course and thousand apologies later we had a new appointment for Monday.

We decided to go shopping instead and took the car to a huge Chinese food store. They have fantastic stuff. Maybe the Dexamethasone is to blame but I get immediately hungry when I see all that food: sweet cakes, known and unknown vegetables, fresh tofu and all kinds of sauces, vegetarian and not. We bought dinner for two days and too many other things that I at least will not have anymore before surgery.

While driving back home on the highway I didn’t pay attention to Monling while she counted on my help. The help I promised to give her. A bastard in a big yellow garbage truck (with a matching character) didn’t allow her to enter the highway and she screamed. There will always be bastards like that but I should have been prepared. And I was not. I observed the situation and shouted to Monling, just exactly the wrong thing to do. She recovered but not because of my help. To make things worse I continued to be angry, with her and with myself and with my situation. I completely lost control. It doesn’t happen so often but when it happens I realize that I’m a large barrel of emotional gunpowder. Ready to blow.  And it is always Monling who has to deal with the consequences. I’m so sorry Monling, please forgive me.

One of the things that I planned to do was to make a web album for our photo’s from Japan. It is a strange thing as our holiday was cut short, kind of ends in midair, frozen in time. Many happy pictures from before the seizure and less and less happy pictures from the period afterwards. You can see “between the lines” that we’re trying to cope with the situation. Well, you can see for yourself when the web album is ready.

Bas came to see us in the afternoon and we had a good time. We discussed surgery of course and the options that I still think to have. Bas stayed for dinner (we had Indonesian food and an Italian coffee afterwards, kinda kinky combo). He will travel to South Africa for a CEO summit so I won’t see him anymore before surgery. The same for Frits and Regine who came to see me for “10 minutes” (fortunately they had more than that to spend). I think it is the last time I see them as well before surgery. As I said in the first paragraph of this post: time has started to run faster and faster and I’m frantically trying to keep up with it. At the same time do I create new actions to keep myself busy. Let go Mr. Boskmann .. relax!

Straight to the point ….

My manager called this morning to hear how I was doing. He is flying all over the place, I hope he takes care of himself but I know he doesn’t. I briefed him on my situation and I’m always surprised about the type of questions he asks me and I appreciate his genuine interest in my situation. He was on his way to Reading andhe gave me a business update. We had not been in touch for a while but as we’re bothbusy with completely different things I’m not surprised. Thanks for your call Bas, I’m looking forward to seeing you soon.

This afternoon I had an appointment with my Neurosurgeon. I thought it would be the last one before surgery but I now understand that the team of Neurosurgeons will visit me on Wednesday afternoon. More about that later. I went to the appointment with my mother as Monling had to stay in bed with a fever/cold. That gave us the opportunity to introduce my mother to Super Nurse and to have, as agreed in the family, the order of the contact persons changed (mother-wife-me instead of me-wife-mother). I will make a communication plan for family, friends and colleagues that hopefully is pragmatic enough to work.

The Neurosurgeon came straight to the point and presented changes in the surgery approach based on the recent large and minor seizures and the Edema. He explained that he was not very surprised that my right hand now joined the party (frequently, see my week reports) as the functional areas for hand and leg are just centimeters apart in a healthy brain. In my case they have been pushed apart by the tumor (in the left hemisphere) but the relative distance is still comparable.

He spoke about the complete removal of the SMA (Supplementary Motor Area) that lies in the medial part of area 6 and is responsible (I believe) for the planning (initiation) of complex movement and the coordination involving both hands. Here you can find a link to an extremely clear website explaining the various motor functions (by Canadian Institutes of Health Research). I know that failing functions on one side of the brain (in my case the left side) can be ‘rebuilt’ by the half of the brain. He predicted a period of 3 months for that process to take place.

We spoke again at length about the removal of the tumor in the speech area. I have the feeling that he is not completely sure what to expect in this area. So the following is my analysis and not by the Neurosurgeon.

At certain MRI slices (photos) of my head the tumor seems detached from the main tumor but I’ve been told it is just one tumor. It is easy to see the parts connect at other MRI slices. Language and speech are very complex functional areas. I don’t know exactly how the position of the tumor is related to Broca’s area and Wernicke’s area but I’m pretty sure that it may be in or near to Broca’s area. These areas are connected by a ‘tunnel’ of fibers, the language loop. Moving from Wernicke’s area to the Broca’s area you can find the following functions:

• Seeing words passively
• Listening to words
• Pronouncing words
• Generating words

When looking at the MRI images do I think that my tumor is close to the latter two functions. I base all this on information I found at another link from the same website (Canadian Institutes of Health Research) dedicated to language and speech.

The Neurosurgeon gave us more information about the Surgery Duration (please refer to my post “Surgery Planning” of the 8th of April). This is the plan:

• 07:30-08:00  I will be taken to the operating theatre
• 08:00-08:30  I will be given a general anaesthetic
• 08:30-09:30  Equipment will be installed (neuro-navigation, etc.)
• 09:30-10:30  The access to my brain will be made
• 10:30-13:30  Measurements will be performed
• 13:30-15:00  Actual surgery (tumor will be removed)
• 15:00-16:30  The access to my brain will be closed
• 16:30-17:00  I will be taken to High Care

My family will be called by the Neurosurgeons and have to go to the hospital. They will be briefed about the outcome of the surgery while I’m in High Care.

Then about probabilities: there is a 5% chance that I will have a permanent loss of motor function(s). The Neurosurgeon expects that this will not be my first and last brain surgery. Further treatment will depend on the result of the biopsy.

Radiotherapy will be required if the tumor has become a grade 3. The tumor has become more clear since the 2nd seizure. The Neurosurgeon does not consider a grade 4 and also does not believe that the tumor is a standard (”bad”) grade 3. He believes that it will at most be a “good” grade 3. Further treatment will in that case be Radiotherapy. We’ll cross that bridge when we get there.

By the way: in 15% of cases the hospital is unable to determine correctly (either way) from the photos what they later find during surgery. Only a biopsy of a large enough part of the tumor will tell for sure what grade tumor it is.

Maybe you have seen the short film introducing the Awake Craniotomy of a young woman (please refer to my post “D-Day Surgery 24 April 2008″. I asked if I could have a similar presentation by the Neurosurgeons. He seemed delighted to do so. So next week Wednesday (after having been admitted to the hospital) I will meet both Neurosurgeons and they will explain my situation in vivid colours. I’m looking forward to that!

So much pain!

It is our wedding day today.

I woke up 3 times last night according to my wife, I remember only one of them. I was standing in an unknown room with white tiles and I had no idea how I got there and how to get out. Must have been our bathroom. Sleeping pills do strange things to me. What I do remember though were the horrible cramps in both legs. As if all muscles contracted at the same time. No matter what I did, no matter how I tried to relax and stretch the muscles, nothing worked. And this in both legs, front and backside. So much pain! 

Early this morning my hand started to throb while in the bakery, I couldn’t spread my fingers and I expected a fourth seizure. That didn’t come, fortunately. The uncomfortable feeling in my hand was there until late in the afternoon. I hope I shouldn’t take it as a sign that tumor has grown through the functional area of my right leg and is now nibbling at my right arm and hand.   

This morning one of our financial advisors, a very friendly guy, came to see me. He owns the company with which we closed and re-closed our mortgage deals, a long time ago when he had just three people working. His company has grown substantially and his life is good. A real self made man, nice car and filling every minute of his free time with scuba diving. I asked him for personal advice last week and today he came to Amsterdam to deliver it. Cool to see. We discussed my tumor and he was interested to hear what the medical plans were and then he discussed our mortgage and our options and he told us full enthusiasm that he would come by with a final proposal next week. He told us not to worry and so we don’t.

Around noon I had to go to the Physiotherapist but as I didn’t trust the situation with my hand did I ask my wife to go with me inside the hospital. I asked Wilfred for help with my muscles and the man worked wonders with his hands again. It was painful at times but well worth it as I felt the tension slip. Thanks Wilfred!

After the visit to the Physiotherapist we went to the market in Amstelveen and while we were there we looked around for signs of available real estate. There were several and we recorded their names. We will keep you posted of progress.

New taps

Still (only) two weeks until surgery. I’m getting nervous. I had a bad night with a lot of cramp in both legs but not that much of a headache in the morning. Super Nurse called later and we agreed that I would drop 0.5mg Dexamethasone in the morning (I’m now at 3.5mg twice daily). The Keppra stays where it is (2×250mg three times daily). She also prescribed a sleeping pill per my request.

A few days ago we invited my parents for lunch but as I still needed to buy a thermostatic shower tap and thermostatic tap for our sink (operated by a single lever) did I ask them to take me to the local bathroom superstore. We were Initially served by a woman who obviously was not used to the concept of “Customers”. My mother found however a tap wizard. He told us exactly what we needed and with a lot of parts and boxes we left the store and headed for lunch.

It was a good lunch (just me and my parents) with plenty of time to talk about the things you can read in weblog but, as they don’t read it, don’t know. Our plans to move and the surgery planning for example. We came home and then my parents suggested they help with the installation of the new taps. Now I completely underestimated the complexity of this task! We also found (after we had turned the main water off) that we lacked tools and later also parts. It rapidly became a disaster and there was no way back. It took us until well into the evening (and after dinner with pizza) to get things fixed. Mom and dad, thanks for your great help! I was so tired!

I’m going to take a sleeping pill. See you tomorrow!

Gyoza and 1000 hits

Monling volunteered to get the ingredients for my most favourite food yesterday. While a friend was babysitting me she went to China Town in Amsterdam to do some shopping. She came back with beautiful fresh Nira (flat Chinese chives), Shitake (Japanese mushrooms), Chinese Cabbage, Tofu and Mu-Ehr (Tree Ears). This morning we spend a few hours cutting all those ingredients in 5mm dices after which we put some salt in the mixture. Soon we could squeeze the liquid out of it using clean linen cloth. Also added to the mixture were two fried eggs, soy sauce and sesame oil. Monling then started to prepare the Gyoza by skilfully wrapping small spoonfuls of the mixture in little round sheets of pastry. You can see in the picture how she shaped them. After several hours she had prepared 85 of them and this evening I had a first 15 for dinner. How wonderful life can be!

I decided to live downstairs while my leg will be recovering from surgery and last week a friend helped me to measure all doorsteps we have on the ground floor. The doorstep of our front door is particularly nasty and high. My friend was here again this afternoon to take us to the local Home Care department to shop for any means that can help across the doorsteps in our house. We were informed by the staff of the Home Care department that any doorstep up to 5cm high should be no problem but that for either permanent or higher doorsteps another agency was responsible. Tomorrow I will give them a call. We also learned that all this can and will be arranged by hospital (Patient Transfer Department) with the Home Care department. It is seems to be far better organized than I thought! Marcus, thanks so much for your help!

Further to my post on the 5th of April in which I seek advice on my TV/PC monitor problem did I receive great feedback from Hendrik, my Belgian friend (from the necktie). He apparently had the same requirements and he bought a Sony TV to solve the problem. He made many suggestions and pointed out some pitfalls and even found a solution for having to switch between different PC attached to one LCD TV/PC. This afternoon Marcus had a look at his response and we discussed some alternatives. UPC (the local TV cable company is not extremely clear on how to connect things). I’m blessed with good friends my friends.

Today is also the day of the FY2009 budget negotiation. The meeting was in Reading (UK) and I was unfortunately unable to go. I’m very curious about the outcome. Did the Salesforce implementation work and how were the reports prepared by Ubbo received? By the way this weblog has generated more than 1000 hits. Far more than I expected.

Surgery Planning

Super Nurse called yesterday but as I was on the other line, she called again today. We discussed my situation and I told her that I was feeling quite ok except for the headaches. She suggested before that I take Paracetamol against the headaches but, like last time, I told her that I don’t need (want) them. The pain is not unbearable and I like to understand (feel) the full extend of the Edema in my head. She suggested that I reduce the dose of Dexamethasone by 0.5mg in the evening (so in total 4.0mg in the morning and 3.5mg in the evening). I’ll start with this tonight and am curious whether such a small change will have any effect. Super Nurse will contact us on Thursday again.

My family have started questions about how we plan to update and involve them (if at all) before, during and after surgery. Similar questions have come from the office. Super Nurse told me about the surgery planning before (Visit to the Oncology Super Nurse) but that was from my perspective (the patient). This morning I therefore asked her again but now from the perspective of the family. I found that there is a great deal uncertain or unknown. Depending on whom you ask and when you ask them you get different answers.

With respect to the Surgery Duration the Neurosurgeon mentioned a duration of 6 hours for an Awake Craniotomy. The Anaesthetist whom we met during the Pre-Operative Screening (28-2-2008) mentioned 8 hours for a normal Craniotomy. Last time (20-3-2008) she mentioned 8 hours as well but this morning she changed her verdict: 4-6 hours. I think that it is safe to assume a duration between 4-8 hours, the shorter the better. We still have the opportunity to ask the Neurosurgeon on the 15th of April for his opinion.

The Neurosurgeon determines when I can be moved to the Recovery Room, (Dutch: Verkoever). This is a high care (post-anaesthesia care unit).  Either the Neurosurgeon or a nurse from Recovery Room will call Monling to tell her the result of surgery and any other information he cares to share. The Recovery Duration is not well defined but it seems that most agree that this will last between 1-2 hours.

The Anaesthetist determines when I can be moved from the Recovery Room to a Medium Care Unit. Monling (and my family) can visit me there but not all at the same time. The Medium Care Duration is also not defined well but the general opinion is that this lasts just one day. The Neurosurgeon will meet with Monling and my family to inform them about the result of my surgery.

After that I’m moved to the Neurosurgery Ward (2C) of the hospital. If there are no complications (problems with emotion, body paralyzed on the right side, unable to speak, no vision) will I be dismissed from the hospital in a matter of days (Regular Care Duration at most 1 week). The drain will be removed from my head in 24h and the turban will be removed after 48h. I will hear the result of the bioption no sooner than 5 days after the operation and the hole in my head should be closed in a week.

The hospital specifies however a series of scenarios where there are minor and/or major medical, physical and emotional complications. In these cases will I have to stay longer in the hospital or be transferred to a special revalidation centre before I can go home. The first major check is in 6 weeks after surgery and during that meeting also any long term expectations for recovery (taking into account the result of the biopsy that was performed during surgery). The Extended Care Duration may last up to 4 months.

On the internet I found a link to a brochure from the hospital (I have no clue why I never got this brochure, it is so useful) but unfortunately it is just in Dutch: Hersenoperatie.pdf

Highlight

I’ll refrain from talking about my morning ritual, it’s the same everyday. I did some work in the morning and went, with a headache, for Physiotherapy with my new shoes. Wilfred spotted them immediately and had to laugh. The shoes are high and difficult to take off so I decided to skip the massage. So 15 minutes on a home trainer (that went well) was followed by learning the basics of walking.

How to step forward with and without looking at my foot (difficult) and how to step forward with a bend knee and then stretch that leg (very difficult!). Wilfred wants me to put down the heel of my right foot first and then roll the rest of my foot forward in a controlled way. I have not that much control over this foot-ankle system with the result that after I put down my heel the controlled roll is actually a loud ‘flap’. That causes a strange sound effect “FLAP flob FLAP flob”.

Wilfred will take care of postponing my Physiotherapy (last treatment 21st of April) and he will talk to my Rheumatologist to discuss my participation in this hospital’s dedicated “Neurology Team”. I hope that a holistic approach (Rheumatism and Neurology) will maximize my chances that I will recover any functions that I may have left. I guess though that recovery and revalidation of my functions related to the functional area for Speech and Emotion will also need attention. Today I have no idea about the scope of the “Neurology Team”.

The Dexamethosone has an effect similar to Enbrel (Etanercept) on my Psoriatic Arthritis although it for sure is not as effective. I had to stop with the Naproxen to avoid the build up of too much Gastric Acid and I am therefore afraid that when the treatment with Dexamethasone against the Edema stops (I’m still taking 2 x 4mg daily) I’ll be right back where I started with the Rheumatism. Perhaps at that time I can restart with Naproxen again but I would prefer going back to Enbrel.