Still kicking

Fat eyes

When we were told to expect an appointment with the Neurosurgeon and Plastic Surgeon in two weeks, we were surprised about the appointment being anticipated to last Monday (as announced in my last post). Even better! I was prepared for complete anesthesia and two hours later I woke up again, my head hurting like hell. The surgeons had performed a procedure that included cutting away infected tissue and cleaning and stitching the remaining skin (now somewhat smaller). 

I slept most of Monday only to awake on Tuesday with a splitting headache and two very fat eyes (one so fat I couldn’t see with it). I received daily visits from the Neurologist, the one on Tuesday most memorable as the Neurologist took a large sterile gauze and started to rub my head with it! That hurt like hell. I asked him if he thought I was behaving like a wee wining baby too much but he said that I was his hero instead (which I doubt very much)!

The rest of the week (Thursday and Friday) I recovered from the surgery (before I planned to show you a ”Before” and “After” picture but after watching the result I descided against it).  The Neurosurgeon kept it a secret whether or not we could go home and (until he gave the “All clear!” on Friday). My wife kept my wounds clean (rinsing them with water and washing them with Betadine shampoo).  Tomorrow we have to go again to the hospital for a check of the wound on my head. We’re anxious to learn what his verdict is: Good, Bad or Too early to tell.

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.

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.

A visit to the Oncology “Super Nurse”

This afternoon we met with the Oncology “Super” Nurse. She promised us last Tuesday when we made this appointment that she would try to have a chat with the Neuro-Surgeon to change my priority. The first thing she told us when we came in that she had done so and that she would contact us on Tuesday with the outcome. She believes that my priority indeed can be raised.

The second reason we wanted to visit her was to ask her about the surgery procedure and the recovery period. She told us about the long time the surgery will take (approximately 8 hours) and that my spouse and family will be informed at the end. The Craniotomy is expertly explained here.

I will be equipped with intravenous drips and drain tubes, the latter will be inserted to monitor the pressure of my my brain. A biopsy of the tumor tissue will be taken and send to a lab to find out what grade it is: grade 2 (no or limited chemotherapy), 3 (extensive chemotherapy) and 4 (extensive radiotherapy possibly in combination with chemotherapy). It will take a few days before the results are back. She told us not to be afraid of chemotherapy: the dreaded chemo drip seems to have been replaced by pills and they seem to be able to also suppress the nauseous effect of the chemo nowadays.

I will be taken to a recovery room (PACU) to recover from the anesthesia and then I’ll be off to a medium care unit. Here I’ll be constantly watched. I’ll be wearing a turban for the first days. If well, I will be allowed to drink and eat the next day and sit out of bed. The intravenous drips and drain tubes will be removed after about 48 hours and stitches (or staples) will be taken out between 2 and 10 days later.

For operations on the front of the head (my case), the muscle which opens the mouth is cut (and reconnected of course) and this can leave the jaw stiff and hard to open wide. This usually recovers within a few weeks. Recovery is aided by eating tough meat (yeah .. that helps :-). When everyone considers that I should be able to move on I will be discharged, but will be seen for further follow-up. I may be discharged to home or a revalidation centre.

Spanners in the works

The Physiotherapist from the Rheumatology Institute called to make an appointment for an intake tomorrow morning at 8am. I gladly accepted that invitation. The intake will take one to two hours. I’m excited as I ‘feel’ that my Rheumatologist is right with his verdict. With the right advise and perhaps some exercises I may be able to regain part of my mobility!

During the pre-operative screening on the 28th of February I asked for the possibility to deposit my own blood (predeposited autologus blood). I received a set of forms that I didn’t quite understand. What was clear thought is that it takes about 5 weeks to deposit the right volume of blood. As the unplanned and unconfirmed date of the surgery draws nearer (second half of April) was I afraid that this could delay the date of the surgery. So I called the hospital to discuss this and found out that I’m not in their planning for the next 5 weeks! I’m so depressed! I don’t want to think that this means that the tumor is growing and perhaps turns into a tumor of a higher grade.

I was picked up from home by a friendly colleague who lives just 500m aways from me and he drove me to the office. I had to go to the office to attend a meeting with colleagues from the UK but due to the storm was their plane delayed. No meeting. Darn! I also learned that despite the fact that my manager defended my position in the Salesforce project the hijacking continues. I was upset for a while again but the decided that it was no longer my fight. I decided to no longer work for my company before surgery.

I explained this to my manager tonight when he called me and he fully agrees. He was very good at motivating me and fortunately had plenty of work to do away from the ‘professionals’ in the centre. Wait and See!

Auto Pilot

Friday, the last working day of this week. I’ve been working most of this week in the office to avoid thinking too much about next week Tuesday (to be honest: there was also a lot of work to do). Especially today do I find it difficult to concentrate on work. Several people at work know about ‘Super Tuesday’ and ask me how I’m doing and what I expect to hear. And I don’t know the answer to that. I honestly don’t. I can’t help wondering what the various outcomes are. I fear that I will be in hospital before I’m ready for it.

I’ve come to a point where I’m getting annoyed when I have to answer well meant questions or have to listen to well meant advice. I answer their questions as if on auto pilot, not thinking about sensitivities or about the person asking the question (I used to vary the level of detail with the level of genuine interest). I also notice that I’m less and less interested in the stories of other people. I often feel ashamed of that. I never felt the centre of the universe but other people may think that I think so now. And should I care if they do? Confusion!

It is like work in itself in not sufficiently claiming my attention. I now even carry an iPod Touch with me with soothing music. I wear just one ear plug. I have still a lot of work to do that should be finished on Tuesday. As always have I overestimated my efficiency and energy and not learned from recent lessons. I will not be able to finish my work unless I work also during the weekend and on Monday. Should I do so? Frustration!

At the end of January did I decide that once all the tests were over I would visit the fitness centre every day. I have become so very fat. I think I went once. I also decided to study hard on the human brain to find out which lobe goes where so that I would understand 100% of the Neuro-Surgeon’s verdict. I think I spend just a few evenings on the subject.

Before I said that I feared that I would be in hospital before I was ready for it. The truth is that I’ve done nothing to get ready. Disappointment!